Question:

good article.  how true.  thanks, jeff

– Hide quoted text — Show quoted text – Sunday Jan. 2, 2005 Knight Ridder/Tribune News Service A hidden disease By DAINA KLIMANIS While members of Jodi Eller’s junior high swim team did laps in the pool, Eller had to make frequent sprints to the bathroom. Her friends went out for fast food, but Eller was unable to stomach the grease. Some days, she could not eat at all. Her classmates were working their way towards graduation, but Eller came home early every day to sleep. It took about a year for Eller to be diagnosed with Crohn’s disease, a disorder causing chronic and painful inflammation of the digestive tract. Crohn’s most severely affects young adults, who are most likely to be diagnosed with the disease, and for reasons researchers don’t fully understand, the incidence of the disease is rising. Now Eller is a senior at the University of Central Florida and one of an estimated 500,000 people in the U.S. living with Crohn’s. Though a recent survey indicated Crohn’s often limits participation in higher education, recent leaps in medicine have helped Eller lead a more active college life than ever. A HIDDEN DISEASE There are few concrete figures on the number of Crohn’s patients, but studies in numerous communities agree that more people are being diagnosed with Crohn’s disease than in recent decades. The disease’s cause remains unclear. It is most common in developed countries, and more common in urban than in rural areas. Researchers believe something in the environment sends the body’s immune system into overdrive, causing it to attack the gut itself, said Dr. Scott Plevy, co-director of the Inflammatory Bowel Disease Center at the University of Pittsburgh Medical Center. Genetic predisposition is also thought to play a part in the disease. Plevy compared what happens to the intestines of people with Crohn’s and ulcerative colitis, a closely related disorder, to scrapes a person might get on his knees after falling off a bicycle. "Entire regions of the intestinal tract can look like they’re scraped like that," Plevy said. "The only difference is in this setting, it doesn’t heal." Though the inflammation is invisible except to specialists, the symptoms are painfully obvious, as Eller discovered. Like most people with Crohn’s, she experienced stomach pain, vomiting and diarrhea so severe, she had to stop racing with her school’s swim team and going out with friends. "I was afraid that this was going to be sort of how my life is going to be, that this was who I was evolving into," Eller said. "And I was just afraid of having that pain every day." Like many who have Crohn’s, Eller was at first diagnosed with another condition. Her doctor treated for hemorrhoids, but her symptoms only worsened, Eller said. Crohn’s and ulcerative colitis often go unrecognized among primary care physicians, Plevy said, because of a lack of awareness about the disease. To make diagnosis more difficult, their symptoms resemble that of irritable bowel syndrome, a prevalent and much less serious disorder. Almost a third of Crohn’s patients had to visit five or more doctors before they were diagnosed with Crohn’s, and nearly half first received a misdiagnosis, according to a survey released this summer by Manhattan Research. The survey was conducted on behalf of the Crohn’s & Colitis Foundation of America and the Digestive Disease National Coalition, and sponsored by Centocor, Inc. Not only is the internal disorder difficult to diagnose, but it has received relatively little public attention, Plevy said. Though Crohn’s is more prevalent than multiple sclerosis, another inflammatory disease, it is much less recognized. A HEAVY TOLL After Eller began receiving treatment for Crohn’s, things improved, she said. She had to eat bland foods, but at least she could eat. At one point she was taking about 17 pills a day, but her pain receded for periods. Even so, Eller never dated because her condition embarrassed her, she said. Good periods were followed by bouts of illness that put her in the hospital, and at one point, the inflammation wore a hole in her intestine wall. "You’ll feel good and active and you can start doing normal things, and then all of a sudden you’ll start doing (worse)," she said. The Manhattan Research survey found that not only did Crohn’s impact personal relationships, but one out of six young adults with Crohn’s said the disease limited their ability to enroll in higher education. Eller found that when her Crohn’s was flaring up, she was hardly able to plan for any kind of future. "When your body hurts, that’s not your goal, to plan what you’ll do in a month or a year," Eller said. "When you are sick, everything changes." The consequences of the disease can be severe, sometimes requiring surgery to remove portions of damaged intestine. Sixty-nine percent of Crohn’s patients have been hospitalized in the last five years, averaging more than a month in the hospital, Manhattan research found; more than half of Crohn’s patients ages 18 to 27 have required surgery in that time. NEW TREATMENTS Things have been changing for Crohn’s patients in the last few years as new treatments are giving them more options than ever. Plevy said that when infliximab, a newly developed drug sold under the brand name Remicade, came out six years ago, it was the first to ever target the underlying causes of inflammation. "If you look at even modern textbook over Crohn’s disease, (it says) our goal is to treat the symptoms," Plevy said. "With Remicade, that has really changed. For the first time in our history-and this is where it is very exciting for us-we are talking about an agent that we think can alter the natural course of this disease." Eller started taking Remicade a few years ago, and soon had more energy than she could ever remember having, she said. Her symptoms waned. Eller hasn’t missed much class in the last two years. In the spring, in addition to class, she was working at an internship at In the meantime, Eller deals with typical college stresses like exams, and plans a normal life for her future. No longer just living day-to-day, she said she hopes to someday get a doctorate so she can research and teach psychology. "At this point, I’m pretty optimistic," Eller said.

Response:

Sunday Jan. 2, 2005 Knight Ridder/Tribune News Service A hidden disease By DAINA KLIMANIS While members of Jodi Eller’s junior high swim team did laps in the pool, Eller had to make frequent sprints to the bathroom. Her friends went out for fast food, but Eller was unable to stomach the grease. Some days, she could not eat at all. Her classmates were working their way towards graduation, but Eller came home early every day to sleep. It took about a year for Eller to be diagnosed with Crohn’s disease, a disorder causing chronic and painful inflammation of the digestive tract. Crohn’s most severely affects young adults, who are most likely to be diagnosed with the disease, and for reasons researchers don’t fully understand, the incidence of the disease is rising. Now Eller is a senior at the University of Central Florida and one of an estimated 500,000 people in the U.S. living with Crohn’s. Though a recent survey indicated Crohn’s often limits participation in higher education, recent leaps in medicine have helped Eller lead a more active college life than ever. A HIDDEN DISEASE There are few concrete figures on the number of Crohn’s patients, but studies in numerous communities agree that more people are being diagnosed with Crohn’s disease than in recent decades. The disease’s cause remains unclear. It is most common in developed countries, and more common in urban than in rural areas. Researchers believe something in the environment sends the body’s immune system into overdrive, causing it to attack the gut itself, said Dr. Scott Plevy, co-director of the Inflammatory Bowel Disease Center at the University of Pittsburgh Medical Center. Genetic predisposition is also thought to play a part in the disease. Plevy compared what happens to the intestines of people with Crohn’s and ulcerative colitis, a closely related disorder, to scrapes a person might get on his knees after falling off a bicycle. "Entire regions of the intestinal tract can look like they’re scraped like that," Plevy said. "The only difference is in this setting, it doesn’t heal." Though the inflammation is invisible except to specialists, the symptoms are painfully obvious, as Eller discovered. Like most people with Crohn’s, she experienced stomach pain, vomiting and diarrhea so severe, she had to stop racing with her school’s swim team and going out with friends. "I was afraid that this was going to be sort of how my life is going to be, that this was who I was evolving into," Eller said. "And I was just afraid of having that pain every day." Like many who have Crohn’s, Eller was at first diagnosed with another condition. Her doctor treated for hemorrhoids, but her symptoms only worsened, Eller said. Crohn’s and ulcerative colitis often go unrecognized among primary care physicians, Plevy said, because of a lack of awareness about the disease. To make diagnosis more difficult, their symptoms resemble that of irritable bowel syndrome, a prevalent and much less serious disorder. Almost a third of Crohn’s patients had to visit five or more doctors before they were diagnosed with Crohn’s, and nearly half first received a misdiagnosis, according to a survey released this summer by Manhattan Research. The survey was conducted on behalf of the Crohn’s & Colitis Foundation of America and the Digestive Disease National Coalition, and sponsored by Centocor, Inc. Not only is the internal disorder difficult to diagnose, but it has received relatively little public attention, Plevy said. Though Crohn’s is more prevalent than multiple sclerosis, another inflammatory disease, it is much less recognized. A HEAVY TOLL After Eller began receiving treatment for Crohn’s, things improved, she said. She had to eat bland foods, but at least she could eat. At one point she was taking about 17 pills a day, but her pain receded for periods. Even so, Eller never dated because her condition embarrassed her, she said. Good periods were followed by bouts of illness that put her in the hospital, and at one point, the inflammation wore a hole in her intestine wall. "You’ll feel good and active and you can start doing normal things, and then all of a sudden you’ll start doing (worse)," she said. The Manhattan Research survey found that not only did Crohn’s impact personal relationships, but one out of six young adults with Crohn’s said the disease limited their ability to enroll in higher education. Eller found that when her Crohn’s was flaring up, she was hardly able to plan for any kind of future. "When your body hurts, that’s not your goal, to plan what you’ll do in a month or a year," Eller said. "When you are sick, everything changes." The consequences of the disease can be severe, sometimes requiring surgery to remove portions of damaged intestine. Sixty-nine percent of Crohn’s patients have been hospitalized in the last five years, averaging more than a month in the hospital, Manhattan research found; more than half of Crohn’s patients ages 18 to 27 have required surgery in that time. NEW TREATMENTS Things have been changing for Crohn’s patients in the last few years as new treatments are giving them more options than ever. Plevy said that when infliximab, a newly developed drug sold under the brand name Remicade, came out six years ago, it was the first to ever target the underlying causes of inflammation. "If you look at even modern textbook over Crohn’s disease, (it says) our goal is to treat the symptoms," Plevy said. "With Remicade, that has really changed. For the first time in our history-and this is where it is very exciting for us-we are talking about an agent that we think can alter the natural course of this disease." Eller started taking Remicade a few years ago, and soon had more energy than she could ever remember having, she said. Her symptoms waned. Eller hasn’t missed much class in the last two years. In the spring, in addition to class, she was working at an internship at In the meantime, Eller deals with typical college stresses like exams, and plans a normal life for her future. No longer just living day-to-day, she said she hopes to someday get a doctorate so she can research and teach psychology. "At this point, I’m pretty optimistic," Eller said.

Response:

Question:

You may want to look at the ingredient list NA. It’s not hard to see why there multi  got the top rating.

The "top rating" didn’t come from a study with actual people taking it and being measured for changes/improvements. It’s not a rating that has any clinical significance.

Response:

" It’s not hard to see why there multi  got the top rating. The "top rating" bestowed by a book written by a USTANKA salesman. According to the website of another organization he works for:  "An Independent Associate of an internationally-based nutritional manufacturer, Mr. MacWilliam currently serves as a consultant in nutrition and fitness." This is from the website of Canada’s Natural Health Products Directorate. Notice it is in the PRESENT TENSE, indicating that Mr. MacWilliam still stands by this description as a USTANKA  salesman. So much for his giving the "top ranking" to his own employer.

Response:

again NA…Obviously this guy was way wrong… The binary plan has been voted number one And obviously from the growth experienced in the last 2 years was this guy ever off base!!!   Sorry but the numbers just don’t lie!!  

You are confused again, Ken. He wasn’t complaining about the compensation plan at all. He made $70,000/year, much, much more than you. His point was: vitamins are vitamins. There’s nothing special about USTANKA’s.

Response:

again NA…Obviously this guy was way wrong… The binary plan has been voted number one And obviously from the growth experienced in the last 2 years was this guy ever off base!!!   Sorry but the numbers just don’t lie!!   You are confused again, Ken. He wasn’t complaining about the compensation plan at all. He made $70,000/year, much, much more than you. His point was: vitamins are vitamins. There’s nothing special about USTANKA’s.

You may want to look at the ingredient list NA. It’s not hard to see why there multi  got the top rating.

Response:

Yep. Been there. Still there. I’m currrently looking for something that I can do from home. Legal work is a possibility. Maybe some sort of mailorder business. A cottage industry – crafts, perhaps. You get the idea …

Response:

Daniel- I have had my share of time out of work.  Luckily I work for a large company that I have been at for 18 years (I was dx’d 6 years ago), so they’ve been very understanding.    It’s a scary thing… not being well enough to work and not earning a steady paycheck.   Depending on the severity of your illness, you could apply for disability. Good luck.

Response:

My 22 rear old son has UC and your letter upset me more than the other 28 I just read.  Thid is the 1st time I’ve visited this site.  My son was let go from his first job after graduating college and is so careful now in pursuing something that won’t be too taxing.  Have you ever tried the specific carb diet that supposedly helps lots of people oith Crohns?  We’re trying it but are’nt sure if it is working yet.

Response:

feel free to email me.

Before emailing Ken, read this: http://jeffohora.com/USANA%20Expose’.htm

Response:

again NA…Obviously this guy was way wrong… The binary plan has been voted number one for 5 or 6 years according to MLM insider.I wonder why that is? And obviously from the growth experienced in the last 2 years was this guy ever off base!!!   Sorry but the numbers just don’t lie!!  

– Hide quoted text — Show quoted text – feel free to email me. Before emailing Ken, read this: http://jeffohora.com/USANA%20Expose’.htm

Response:

I am fortunate enough that I can still hold a full time job.  I am a computer programmer and there is a high level of stress.  Is it good stress. I think sometimes it is.  I like my job..  However, there are days in which I wish I could stay home.  Sometimes I do.  I have Family Medical Leave Act at my job and I can take intermitent days off.  I limit them really to procedures I can’t schedule after work hours or for when I have to go to the ER for an obstrution.  FMLA is a federal act that corporations have to honor for people with disabilities.  On the flip side, job performance can still play into whether or not they let you go.   Each company can massage the rules on how they manage your time off.  It is something to look into when getting a job.  It may help you keep your job longer if you know you can periodically take leave to heal yourself.

– Hide quoted text — Show quoted text – No this post is not about how to use your Crohn’s to earn a living…It’s my wondering about your experiences earning a living while managing Crohn’s or UC or any chronic disease for that matter. I’m only 23 but nevertheless, I live with my parents and they support me financially.  I just don’t have the energy or stability to work.  In the past several years (i’ve had crohn’s for 5 now) I’ve found that when i’m feeling well I find employment but inevitably get sick again within several months of dealing with the added stress of work.  My longest work was 6 months and that took me from complete remmission to being Really sick (like sick 24/7)  I use easily 500$/month of vitamins, supplements, probiotics and now meds not to mention a diet that costs another $200-400/month just for me.   If i were to live on my own I would need another  400$/month for rent (I live in a very expensive city).  But netting $1200/month is almost unthinkable to me – I just can’t think of anyway to do it that still gives first priority to staying healthy.  This is worrysome to me as a young man, I feel the pressures of our society to be able to support myself and in the future, a family.  I have two older friends who have managed chronic diseases since quite young.  One has severe rhumitoid arthrytis and the other one a still undiagnoses but nonetheless crippling GI disbyosis (IBS?). Both of them have never been able to work but managed the different type of stress of raising a family instead. Ok that’s just my thoughts, I’m not asking anyone to solve my money woes, you all don’t really know me well enough to suggest a career for me anyway. What I am asking is for you to relate how you’ve solved this problem.  Or even IF you’ve solved it.  Is it a matter of getting a really easy minimum wage job and living in poverty with good meds and food?  Is it a matter of doubling up on the meds an then just pushing on with it?  Is it about getting such a good education that you get paid a lot of money for little work or perhaps better phrased as little physical excertion?  I dunno, I’m at a loss and it bothers me constantly.  What are your thoughts???  I’m REALLY tired of feeling sick but almost more than that I want to feel independant again. Thanks in advance Daniel

Response:

Wowsa!  For me anyways I don’t have a too much of a problem with work… Even with it being Physical. Nor do I do any meds. Too me your first priority should be to get your health backup.  It’s pretty tough to find a job thats stress free. I believe your on the right track….  But 500 a month on supplements?  My highest was 400 a month. I sure hope you have proanthocyanidins and Coenzymeq10 in that 500. feel free to email me.

– Hide quoted text — Show quoted text – No this post is not about how to use your Crohn’s to earn a living…It’s my wondering about your experiences earning a living while managing Crohn’s or UC or any chronic disease for that matter. I’m only 23 but nevertheless, I live with my parents and they support me financially.  I just don’t have the energy or stability to work.  In the past several years (i’ve had crohn’s for 5 now) I’ve found that when i’m feeling well I find employment but inevitably get sick again within several months of dealing with the added stress of work.  My longest work was 6 months and that took me from complete remmission to being Really sick (like sick 24/7)  I use easily 500$/month of vitamins, supplements, probiotics and now meds not to mention a diet that costs another $200-400/month just for me.   If i were to live on my own I would need another  400$/month for rent (I live in a very expensive city).  But netting $1200/month is almost unthinkable to me – I just can’t think of anyway to do it that still gives first priority to staying healthy.  This is worrysome to me as a young man, I feel the pressures of our society to be able to support myself and in the future, a family.  I have two older friends who have managed chronic diseases since quite young.  One has severe rhumitoid arthrytis and the other one a still undiagnoses but nonetheless crippling GI disbyosis (IBS?). Both of them have never been able to work but managed the different type of stress of raising a family instead. Ok that’s just my thoughts, I’m not asking anyone to solve my money woes, you all don’t really know me well enough to suggest a career for me anyway. What I am asking is for you to relate how you’ve solved this problem.  Or even IF you’ve solved it.  Is it a matter of getting a really easy minimum wage job and living in poverty with good meds and food?  Is it a matter of doubling up on the meds an then just pushing on with it?  Is it about getting such a good education that you get paid a lot of money for little work or perhaps better phrased as little physical excertion?  I dunno, I’m at a loss and it bothers me constantly.  What are your thoughts???  I’m REALLY tired of feeling sick but almost more than that I want to feel independant again. Thanks in advance Daniel

Response:

No this post is not about how to use your Crohn’s to earn a living…It’s my wondering about your experiences earning a living while managing Crohn’s or UC or any chronic disease for that matter. I’m only 23 but nevertheless, I live with my parents and they support me financially.  I just don’t have the energy or stability to work.  In the past several years (i’ve had crohn’s for 5 now) I’ve found that when i’m feeling well I find employment but inevitably get sick again within several months of dealing with the added stress of work.  My longest work was 6 months and that took me from complete remmission to being Really sick (like sick 24/7)  I use easily 500$/month of vitamins, supplements, probiotics and now meds not to mention a diet that costs another $200-400/month just for me.   If i were to live on my own I would need another  400$/month for rent (I live in a very expensive city).  But netting $1200/month is almost unthinkable to me – I just can’t think of anyway to do it that still gives first priority to staying healthy.  This is worrysome to me as a young man, I feel the pressures of our society to be able to support myself and in the future, a family.  I have two older friends who have managed chronic diseases since quite young.  One has severe rhumitoid arthrytis and the other one a still undiagnoses but nonetheless crippling GI disbyosis (IBS?). Both of them have never been able to work but managed the different type of stress of raising a family instead. Ok that’s just my thoughts, I’m not asking anyone to solve my money woes, you all don’t really know me well enough to suggest a career for me anyway. What I am asking is for you to relate how you’ve solved this problem.  Or even IF you’ve solved it.  Is it a matter of getting a really easy minimum wage job and living in poverty with good meds and food?  Is it a matter of doubling up on the meds an then just pushing on with it?  Is it about getting such a good education that you get paid a lot of money for little work or perhaps better phrased as little physical excertion?  I dunno, I’m at a loss and it bothers me constantly.  What are your thoughts???  I’m REALLY tired of feeling sick but almost more than that I want to feel independant again. Thanks in advance Daniel

Response:

Question:

I don’t really think there’s any reason to worry about taking prescribed amounts of benzodiazepines under a doctor’s supervision.  If they are helping you, I think it’s a perfectly rational decision to continue to take them while you learn other stress reduction skills like meditation. … It’s your decision, of course, and I don’t know anything about Nordaz — I just wanted to share my experiences.  I personally have never found any medication that works anywhere near as well as Xanax or Ativan for my PMS or for the periods in my life when I’m under too much stress.  It’s a

godsend. Thank you very much for your email, I feel better now.  What I read on the internet was probably for people taking high doses.  He gave me 7.5mg of mine (the dose is different for each benzo derrivative so one can’t compare doses between Xanax & Nordaz for example) and he said I could take 15mg if 7.5mg didn’t work.  Well 7.5mg seems to be working great so I know I’m at not at the highest dose.  The pills are designed to but easily broken in half, and I think next week I’m going to try taking half and see if I’m OK. I’d feel much better taking 4mg. Even at such a low dose it’s not a permanent solution because they are addictive and one build’s up a tolarance.. which means after a while 4mg won’t work any more and I’ll need 7.5mg and then 15mg etc.  At least that’s what I read.. Thanks again, you put me to ease a bit. Michael

Response:

Hi Michael, You might also find that the Nordaz is relaxing you so that you are not getting bad intestinal contractions and hence pain at night. I know where you are at with the tiredness and not getting a good night’s sleep because of pain is a major drawback. It is good to hear that you have been feeling better. I was concerned because of the additional problems that Nordaz can cause you. I think that it is always best to do as much research as you can on your drugs, so that when you start getting the side-effects that you can help your doctor diagnose you. There are many additional reasons why you could be feeling so tired. A reason for my tiredness was asymptomatic (i.e. no chest pains) reflux oesophagitis (GERD), which really brings one’s quality of life down. Another reason was an infection after a bout of food poisining or gut flu last September, which I managed to get rid of last month. Vitamin B12 and folic acid deficiencies can cause tiredness as can chronic dehydration due to diarhoea. However, you are probably tired because of this horrible disease and the drugs. Please let us know how you get on and don’t overdo it. All the best, Vanny eats less healthily, does not do any sport, etc.  Just remember that diazepam (valium) and its derivatives are addictive (www.rxlist.com www.drugs.com) and are not addressing the underlying issue, which is your disease. In the short term these medications may help you, but in the long term they may make matters worse. The trouble is that you are ill, but

It’s been one week since I’ve been taking the Nordaz.  You are right, it is a derivative of diazepam and the benzodiazepines.  I just did some research on them and this is not the solution I want!!  These things are addictive: http://www.benzo.org.uk/FAQ1.1.htm http://www.benzodiazepine.org/ It’s a shame it’s so dangerous because it works so well!!  I’ve been feeling tired for almost a year now and doctor’s just can’t explain it.  A friend of my wife’s is a doctor so casually over dinner I asked her and she said "Do you sleep well?"  Well the truth is I hadn’t, I often can’t sleep until late at night or even more common I’ll wake up at 3am feeling wide away and ready to go.  Then I notice my alarm clock and I can’t believe it when it says 3am cause I feel like I had a full night’s sleep.  But then it catches up to me during the day. Anyway, I’ve been sleeping incredibly well with this new medicine.  In fact this weekend I slept 10 hours both days AND took a 1 hour nap both days, which is very odd.  I think this medicine is really calming me down, which is great for the stomach and intestines but bad for everything else. So now I know what I’m dealing with!  Thanks for pointing out the connection to valium, I really wasn’t aware it was this bad until today when I started searching.  My plan is to find a psychiatrist to find out if there is a safer medicine to take while I learn non-medicine alternatives (yoga, meditiation, etc.).  I’ll post my experience.. -michael

Response:

I don’t really think there’s any reason to worry about taking prescribed amounts of benzodiazepines under a doctor’s supervision.  If they are helping you, I think it’s a perfectly rational decision to continue to take them while you learn other stress reduction skills like meditation. I take Xanax for PMS.  My doctor has told me that up to 1.5 mgs a day will not result in "addiction."  He says I’d certainly feel it if I took 1.5 a day for an extended period and then stopped abruptly, but that it wouldn’t pose any health risks to do so. I just took a half mg of Xanax because I was experiencing some rather severe anxiety in anticipation of my SO’s surgery tomorrow.  I feel much better, and the medication is allowing me to be productive, here at my desk, when I had just about resigned myself to being a blithering idiot for the day. It’s quite a relief. Many years ago, I had a nervous breakdown during a brief, abusive marriage. My psychiatrist at the time had me taking quite a bit of Ativan, and I did experience withdrawal when I stopped.  It wasn’t really a big deal; I just had the shakes.  By the time I stopped Ativan, I had learned better relaxation techniques and was cocooned in a safe environment, so I just put up with the trembling and general malaise for a couple of days and then got on with my life (and, when I was stronger, with my divorce But I have certainly heard that, in cases of strong dependence of high doses of benzos, the withdrawal can be excrutiating and should be medically supervised. It’s your decision, of course, and I don’t know anything about Nordaz — I just wanted to share my experiences.  I personally have never found any medication that works anywhere near as well as Xanax or Ativan for my PMS or for the periods in my life when I’m under too much stress.  It’s a godsend. ep

– Hide quoted text — Show quoted text – eats less healthily, does not do any sport, etc.  Just remember that diazepam (valium) and its derivatives are addictive (www.rxlist.com www.drugs.com) and are not addressing the underlying issue, which is your disease. In the short term these medications may help you, but in the long term they may make matters worse. The trouble is that you are ill, but It’s been one week since I’ve been taking the Nordaz.  You are right, it is a derivative of diazepam and the benzodiazepines.  I just did some research on them and this is not the solution I want!!  These things are addictive: http://www.benzo.org.uk/FAQ1.1.htm http://www.benzodiazepine.org/ It’s a shame it’s so dangerous because it works so well!!  I’ve been feeling tired for almost a year now and doctor’s just can’t explain it.  A friend of my wife’s is a doctor so casually over dinner I asked her and she said "Do you sleep well?"  Well the truth is I hadn’t, I often can’t sleep until late at night or even more common I’ll wake up at 3am feeling wide away and ready to go.  Then I notice my alarm clock and I can’t believe it when it says 3am cause I feel like I had a full night’s sleep.  But then it catches up to me during the day. Anyway, I’ve been sleeping incredibly well with this new medicine.  In fact this weekend I slept 10 hours both days AND took a 1 hour nap both days, which is very odd.  I think this medicine is really calming me down, which is great for the stomach and intestines but bad for everything else. So now I know what I’m dealing with!  Thanks for pointing out the connection to valium, I really wasn’t aware it was this bad until today when I started searching.  My plan is to find a psychiatrist to find out if there is a safer medicine to take while I learn non-medicine alternatives (yoga, meditiation, etc.).  I’ll post my experience.. -michael

Response:

What I’ve learned is CHANGE IS STRESS.  Even if we don’t feel stressed, if we’re experiencing lots of change in our lives it can be stressful.  And it’s a vicious circle.  I’ve stopped working out because I haven’t felt well.  But by not working out I’m not relieving stress like I was!  Etc.

Just wanted to say excellent post Michael. Sometimes we need stress also, but we need balance. Just wondering if you are also aware that for example hitting your knee is also stress on the body? I know it sounds like nothing but a nasty hit can really take you for a spin. Once we are aware of what stress really means we can work with it, as some stress we will always have. That is just life. So my question is this:  Are people in this newsgroup taking anti-stress medicine?  Does it work for you?  I’ll post my results and I hope to see yours too.

Have you considered listening to relaxation tapes, and/ or learn self hypnosis? Once good at that you can do it in a coffee break at work and distress that way. tapes would be great to listen to before going to sleep. You might even sleep much better which would of course help the body to heal, physically and emotionally.

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eats less healthily, does not do any sport, etc.  Just remember that diazepam (valium) and its derivatives are addictive (www.rxlist.com www.drugs.com) and are not addressing the underlying issue, which is your disease. In the short term these medications may help you, but in the long term they may make matters worse. The trouble is that you are ill, but

It’s been one week since I’ve been taking the Nordaz.  You are right, it is a derivative of diazepam and the benzodiazepines.  I just did some research on them and this is not the solution I want!!  These things are addictive: http://www.benzo.org.uk/FAQ1.1.htm http://www.benzodiazepine.org/ It’s a shame it’s so dangerous because it works so well!!  I’ve been feeling tired for almost a year now and doctor’s just can’t explain it.  A friend of my wife’s is a doctor so casually over dinner I asked her and she said "Do you sleep well?"  Well the truth is I hadn’t, I often can’t sleep until late at night or even more common I’ll wake up at 3am feeling wide away and ready to go.  Then I notice my alarm clock and I can’t believe it when it says 3am cause I feel like I had a full night’s sleep.  But then it catches up to me during the day. Anyway, I’ve been sleeping incredibly well with this new medicine.  In fact this weekend I slept 10 hours both days AND took a 1 hour nap both days, which is very odd.  I think this medicine is really calming me down, which is great for the stomach and intestines but bad for everything else. So now I know what I’m dealing with!  Thanks for pointing out the connection to valium, I really wasn’t aware it was this bad until today when I started searching.  My plan is to find a psychiatrist to find out if there is a safer medicine to take while I learn non-medicine alternatives (yoga, meditiation, etc.).  I’ll post my experience.. -michael

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Edna, you and he will both find that after the remove the damage the recovery isn’t all that bad because you know you are going to feel better after healing.  My first surgery I was in 6 days and recovery time was so long for me because of how weak It was that it was easy 8 months before I started to actually start seeing the healing amount I was getting with the shorter bowels it was different for me and I was quite tiny.  This last surgery I was in for 7 days but would have probably gotten out sooner if I had not picked up a severe infection while in the hospital.  I was alert a few hours after surgery, well as alert as one can be on morphine!  I think him getting the strength back and weight too is a big difference towards recovery.  If I can help either of you let me know. UM MOM Susan

– Hide quoted text — Show quoted text – Thanks for prodding us to call the doc, Susan.  He has an appointment for day after tomorrow.  This new doctor’s office has been very accommodating. Ted is holding steady at 150 pounds — I guess he probably lost between 10 and 20 pounds when all this started in December.  After the last bout with throwing up (after eating hamburgers at a Superbowl party), he looked so thin it was distressing, but he got himself back up to 150 before last night’s episode. I feel ready to take care of him through surgery — my own life is finally reaching some sort of normalcy.  If the doctor agrees it’s time, I’m ready to go for it, and I think he is too.  I think he may have reached the maximum point of gains from the Entocort, and if surgery is delayed any longer, he might start weakening again. There he goes — I hear him throwing up again.  I repeat, this sucks. Wish us luck. ep Edna, it doesn’t hurt to have him call the doc today and let him know of the incident last night and how he was feeling.  This allows the dr to be able to step in and move the appt up or adjust meds, diet or anything else. Personally from my own experiences with surgery,  I would never regret doing it and living like he is today.  My first surgery came down to me damanding it as the tests never showed anything or was misread and I was just so weak that by the time I got to the proper dr I was in emergency surgery in a week trying to stablize me as much as he could to make sure I got through the surgery.  I weighed only 74 pounds by then.  UM MOM Susan

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I threw up lunch and dinner daily for months before finally having my surgery, so I know exactly what you both are going through.  I lost 45 pounds.  I remember sitting at work and I’d puke in my garbage can and then keep on working.  It became a normal thing for me.  I remember my coworker saying "man aren’t you going home?  You just threw up!" and I said "No I feel much better now". Your love for him is amazing, he is really lucky to have you!

– Hide quoted text — Show quoted text – Thanks for prodding us to call the doc, Susan.  He has an appointment for day after tomorrow.  This new doctor’s office has been very accommodating. Ted is holding steady at 150 pounds — I guess he probably lost between 10 and 20 pounds when all this started in December.  After the last bout with throwing up (after eating hamburgers at a Superbowl party), he looked so thin it was distressing, but he got himself back up to 150 before last night’s episode. I feel ready to take care of him through surgery — my own life is finally reaching some sort of normalcy.  If the doctor agrees it’s time, I’m ready to go for it, and I think he is too.  I think he may have reached the maximum point of gains from the Entocort, and if surgery is delayed any longer, he might start weakening again. There he goes — I hear him throwing up again.  I repeat, this sucks. Wish us luck. ep Edna, it doesn’t hurt to have him call the doc today and let him know of the incident last night and how he was feeling.  This allows the dr to be able to step in and move the appt up or adjust meds, diet or anything else. Personally from my own experiences with surgery,  I would never regret doing it and living like he is today.  My first surgery came down to me damanding it as the tests never showed anything or was misread and I was just so weak that by the time I got to the proper dr I was in emergency surgery in a week trying to stablize me as much as he could to make sure I got through the surgery.  I weighed only 74 pounds by then.  UM MOM Susan

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Thanks for prodding us to call the doc, Susan.  He has an appointment for day after tomorrow.  This new doctor’s office has been very accommodating. Ted is holding steady at 150 pounds — I guess he probably lost between 10 and 20 pounds when all this started in December.  After the last bout with throwing up (after eating hamburgers at a Superbowl party), he looked so thin it was distressing, but he got himself back up to 150 before last night’s episode. I feel ready to take care of him through surgery — my own life is finally reaching some sort of normalcy.  If the doctor agrees it’s time, I’m ready to go for it, and I think he is too.  I think he may have reached the maximum point of gains from the Entocort, and if surgery is delayed any longer, he might start weakening again. There he goes — I hear him throwing up again.  I repeat, this sucks.  Wish us luck. ep

– Hide quoted text — Show quoted text – Edna, it doesn’t hurt to have him call the doc today and let him know of the incident last night and how he was feeling.  This allows the dr to be able to step in and move the appt up or adjust meds, diet or anything else. Personally from my own experiences with surgery,  I would never regret doing it and living like he is today.  My first surgery came down to me damanding it as the tests never showed anything or was misread and I was just so weak that by the time I got to the proper dr I was in emergency surgery in a week trying to stablize me as much as he could to make sure I got through the surgery.  I weighed only 74 pounds by then.  UM MOM Susan

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The story’s not over yet  :-)  He’s on Entocort, Pentasa, acetomeniphen, and vitamin pills and is disinclined to to add any more pills to the mix — he

Here’s my quick thoughts, and these are often denied by doctors: – Prednisone is more effective than Entocort.  It’s more dangerous, but more effective.  Used short term it’s a miracle.  Can he take pred for 3 months to get healthier and then go back to Entocort? – I was controlling my crohn’s with steroids but now I’m hoping I can control it with anti-anxiety medicine.  So far I’ve only taken it for a few days but I noticed today at work for the first time my hands weren’t all that sweaty!  And I had a 1-on-1 meeting with the big boss and I was leaning back in my chair as relaxed as can be. It was great! I totally agree 100% with what you said about taking pills when you really need them.  I’m the kind that will suffer with a headache (a mild one) cause I don’t want to take too many pills (Tylenol).  But when I get a really bad one, screw it I’m taking the Tylenol.  Same with the anti-stress medicine. -michael

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Edna, it doesn’t hurt to have him call the doc today and let him know of the incident last night and how he was feeling.  This allows the dr to be able to step in and move the appt up or adjust meds, diet or anything else. Personally from my own experiences with surgery,  I would never regret doing it and living like he is today.  My first surgery came down to me damanding it as the tests never showed anything or was misread and I was just so weak that by the time I got to the proper dr I was in emergency surgery in a week trying to stablize me as much as he could to make sure I got through the surgery.  I weighed only 74 pounds by then.  UM MOM Susan

– Hide quoted text — Show quoted text – When he went to his old GI, I told him to ask about anti-anxiety medication. The GI said stress had nothing to do with my SO’s flares, and gave him no medication whatsoever (not even for his Crohns, much less stress).  We changed doctors. And the rest of the story?  Did he finally get anti-stress medicine? Did it help his Crohn’s??  Interesting story! The story’s not over yet  :-)  He’s on Entocort, Pentasa, acetomeniphen, and vitamin pills and is disinclined to to add any more pills to the mix — he hasn’t even asked Dr2 about the possibility of anti-anxiety medication. And our life has quieted down a lot.  He has pretty much moved in with me so I can help take care of him and we can keep each other’s spirits up while we "wait and see" whether he is going to have to have surgery.  We live very quietly and avoid stress. I guess you could say we’re not really living in the "real world" right now. I’m trying to get back to a routine of working and exercising, now that things have quieted down in MY life some, and there is just this "holding our breath" feeling of waiting for the decision about what to do about his health.  (I expect surgery, and will welcome it, at this point — he’s just spending too much time in misery, though the Entocort has given him some pain-free days and allowed him to build some strength and health.) Before this "crisis" began in December, though, we were seeing a very distinct pattern with his flares vis a vis stress.  There was a very particular kind of stress that would trigger a flare.  He is an oldest son, very upright, moral, and responsible.  And whenever he was faced with a particular type of social or familial obligation and he felt anxiety about his abililty to perform perfectly, he would get sick as soon as he had finished performing the obligation.  We talked some about his deciding to just say "no" to situations that triggered this sort of stress — they were recognizable enough to do just that, I felt.  But I also wondered whether it would help if he would just take a Xanax or something as soon as we noticed such a trigger was confronting him.  That was a question we never got answered, because he got so much worse so suddenly in the face of a HUGE barrage of stress in MY life. (And, sorry, I totally disagree with somebody who said pills aren’t the answer to stress.  In a situation like this, if a pill makes the difference between his staying healthy versus throwing up all night and losing weight, take the pill.  Please.  Until we have both meditated our way to complete enlightenment and mastery over our emotions, I advocate better living through chemistry whenever possible.) Stress doesn’t have much to do with his state of health since December — he’s just sick.  Diet is more significant, as far as something we have any control over.  So the stress issue is basically off the table for now. He was uncomfortable all day yesterday, ate and drank very little, but then tried some roast chicken last night, and then threw up all night.  This is really getting old.  He has a few good days during which he is active and eats carefully, then, after a few days he has another 24 hours or so of misery, followed by weight loss and recovery.  His next appointment with his GI is over a week away; I’m wondering if it shouldn’t be moved up.  This sucks. ep

Response:

When he went to his old GI, I told him to ask about anti-anxiety medication. The GI said stress had nothing to do with my SO’s flares, and gave him no medication whatsoever (not even for his Crohns, much less stress).  We changed doctors. And the rest of the story?  Did he finally get anti-stress medicine?  Did it help his Crohn’s??  Interesting story!

The story’s not over yet  :-)  He’s on Entocort, Pentasa, acetomeniphen, and vitamin pills and is disinclined to to add any more pills to the mix — he hasn’t even asked Dr2 about the possibility of anti-anxiety medication.  And our life has quieted down a lot.  He has pretty much moved in with me so I can help take care of him and we can keep each other’s spirits up while we "wait and see" whether he is going to have to have surgery.  We live very quietly and avoid stress. I guess you could say we’re not really living in the "real world" right now. I’m trying to get back to a routine of working and exercising, now that things have quieted down in MY life some, and there is just this "holding our breath" feeling of waiting for the decision about what to do about his health.  (I expect surgery, and will welcome it, at this point — he’s just spending too much time in misery, though the Entocort has given him some pain-free days and allowed him to build some strength and health.) Before this "crisis" began in December, though, we were seeing a very distinct pattern with his flares vis a vis stress.  There was a very particular kind of stress that would trigger a flare.  He is an oldest son, very upright, moral, and responsible.  And whenever he was faced with a particular type of social or familial obligation and he felt anxiety about his abililty to perform perfectly, he would get sick as soon as he had finished performing the obligation.  We talked some about his deciding to just say "no" to situations that triggered this sort of stress — they were recognizable enough to do just that, I felt.  But I also wondered whether it would help if he would just take a Xanax or something as soon as we noticed such a trigger was confronting him.  That was a question we never got answered, because he got so much worse so suddenly in the face of a HUGE barrage of stress in MY life. (And, sorry, I totally disagree with somebody who said pills aren’t the answer to stress.  In a situation like this, if a pill makes the difference between his staying healthy versus throwing up all night and losing weight, take the pill.  Please.  Until we have both meditated our way to complete enlightenment and mastery over our emotions, I advocate better living through chemistry whenever possible.) Stress doesn’t have much to do with his state of health since December — he’s just sick.  Diet is more significant, as far as something we have any control over.  So the stress issue is basically off the table for now. He was uncomfortable all day yesterday, ate and drank very little, but then tried some roast chicken last night, and then threw up all night.  This is really getting old.  He has a few good days during which he is active and eats carefully, then, after a few days he has another 24 hours or so of misery, followed by weight loss and recovery.  His next appointment with his GI is over a week away; I’m wondering if it shouldn’t be moved up.  This sucks. ep

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sorry ..i was in the same situation was more or less fired for missin time ..long story short ..we do have rights ..i went to union then human rights i got my job back ..talk to a lawyer ..sue your ex employer – Hide quoted text — Show quoted text – I’ve had two major flares since my surgery 4 years ago.  The first flare was about 2 1/2 years after my surgery, and it hit me out of no where, just 3 weeks before I got married.  My wife & I live in France and we were planning our wedding in the US (I’m American, from Phoenix).  I didn’t really know it at the time but it was a stressful time for me.  I took a week off work to recover, and when I went back they fired me, making it worse.  Despite that, with a high dose of Entocort and prednisone I was able to enjoy the wedding and honeymoon.  When I got back an x-ray showed 3 strictures where they had performed my surgery before. Just this week (4 years exactly after my surgery) I had my second major flare.  I thought it would pass but after 12+ hours of intense stomach pain I went to the ER.  In the past year I haven’t been in a flare but at the same time I haven’t been doing that great either.  Often I have stomach pains and feel very tired (physically, but not mentally).  Often I can’t sleep much.  Looking at my life recently, I now recognize it’s full of stress.  In December I flew back to the US to be with my stepmother who was dying of cancer. Then in January I just started a new job.  I didn’t feel stressed but I started reading up and I learned that change is stressful (even if we don’t know it). The last time I saw my regular GI was just last Tuesday and I asked her about the stress.  She didn’t want to give me any anti-stress medicine, which I really think I need.  So while I was in the hospital, I asked the GI there (a different hospital so it was good to have a second opinion) and he gave me a medicine called Nordaz (Nordiazepam is the generic name).  I just started it last night.  I am recovering from the flare, 2 days without food or water, etc. so it will take a week to see if it’s working.  But I’m glad a doctor at least listened to me and saw my point of view that I thought stress could be affecting my Crohn’s. In any case, I think I’m going to see either a pyschologist or a pyschiatrist (not sure which) to look into this stress relation more closely.  Over the past year few years my life has been stressful and I’m sure it’s why my Crohn’s has been active.  I’ve had 4 jobs since coming to France, 2 were failed start-ups and 1 was the one who fired me.  The 4th is my first job in an entirely french speaking company and that is stressful. I speak French fluently but still it’s a lot more difficult to work 100% in French than to work in English or a mix.  I’ve only been there a few weeks and I’m on a project with a really agressive budget and schedule.  Everyone seems to work 45-50 hours a week there.  I think if I work 40 I will be fired.  I find myself very tense at work, like with my shoulders all tense and raised up.  When I notice I take deep breaths and relax, but then 30 minutes later I find myself in the same tense position. In summary: – got married – got fired – got a new job – company laid everyone off – was unemployed for 6 months without any unemployment – stepmother died (we were very very close) – apartment flooded – started a new job What I’ve learned is CHANGE IS STRESS.  Even if we don’t feel stressed, if we’re experiencing lots of change in our lives it can be stressful.  And it’s a vicious circle.  I’ve stopped working out because I haven’t felt well.  But by not working out I’m not relieving stress like I was!  Etc. So my question is this:  Are people in this newsgroup taking anti-stress medicine?  Does it work for you?  I’ll post my results and I hope to see yours too. -michael all ibs ibd crohns victims need anti-stress invirorment an if possible meds

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When he went to his old GI, I told him to ask about anti-anxiety medication. The GI said stress had nothing to do with my SO’s flares, and gave him no medication whatsoever (not even for his Crohns, much less stress).  We changed doctors.

And the rest of the story?  Did he finally get anti-stress medicine?  Did it help his Crohn’s??  Interesting story! -michael

Response:

Don’t take an anti-stress drug – they’re not the answer. What’s needed is a lifestyle – and possibly an attitude – change. Nowadays, I go to great lengths to avoid stress. Being busy is one thing, but running about like a headless chicken is another. I think things through, and if at all possible, avoid anything that’s overly stressful. I don’t feel the need to justify myself, or make excuses.

This was my incorrect way of thinking too.  In fact I thought I wasn’t stressed.  I *was* stressed and didn’t even know it.  For one thing, change can be stressful.  Changing a job, even if the job isn’t stressful itself, the entire event can be stressful.  Especially to people who tolorate it less than others.  Stress is a hidden problem for most people. Another thing, for over a year now I’ve been complaining of sweaty hands.. but oddly enough it only happens certain times.  For example when I was in the US visiting my stepmother who was dying, I had sweating hands while in her house.  When I went to the library (to use the net) or the store, my hands were completely dry.  When I came back home my hands were very dry.  I started a new job, even now my hands are sweaty at work but when I get home they’re normal.  I was going crazy trying to figure it out, but now I know. It’s stress!!! -michael

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Hi Mike, You have probably found some of these sites, but I did a search last year and put this little list together, which might help you (see end of mail). I am pleased that you are thinking of the drugs as being a short-term solution. I think that my protective, maternal instincts came to the fore. I have read that benzodiazepines can cause depression (!) and have many other side-effects and interactions with other drugs. I am sure that your doc told you that you should not drink alcohol and not drive a car until you have established how the drug affects you. Check the side-effects etc. on the www.rxlist.com and www.drugs.com sites. If you haven’t read this paper on Crohn’s perhaps it would be worth you printing it out http://www.healthandage.com/html/well_connected/pdf/doc103.pdf I have found a couple of errors in it, but it is not bad for an 18 page up to date treatise on Crohn’s. All the best, Vanny http://ibscrohns.about.com/library/weekly/aa061200a.htm Mourning the Loss of Good Health The loss of your health can take you through the stages of grief. In 1969, Dr. Elisabeth Kubler-Ross proposed 5 stages of death and dying in her book On Death and Dying. Most of us are familiar with what is often called ‘the five stages of grief’, which are: Denial, Anger, Depression, Bargaining, Acceptance http://content.health.msn.com/content/article/25/1728_58157 Control Stress and Eat Well: It May Help Your Gut By  Roxanne Nelson WebMD Medical News Archive June 2, 2000 — What causes inflammatory bowel disease? No one knows for sure, but many researchers believe that stress is a culprit when it comes to disease flare-ups. However, Emeran Mayer, MD, says the answer is clear. In a recent article in the scientific journal Gut, he writes that two large studies have clearly demonstrated that IBD symptoms can worsen after "severe, sustained life stresses." http://www-fhs.mcmaster.ca/idrp/leading.htm For years, doctors and patients have debated the relationship between IBD and stress. In fact, some forms of IBD were originally thought to be psychosomatic. "Every disease on the planet, from malignancy to heart disease, gets worse at times of stress," notes Dr. Collins. "That tendency is magnified several-fold when it comes to the gastrointestinal tract because of its special relationship to the brain." Second only to that organ in the number of nerves it contains, the, gut "has a very intricate and very broad circuitry that connects it to the day-today, minute-to-minute functions of the brain." Research by Dr. Collins and his team suggests that the stress/IBD relationship is very real. http://www.ccfa.org/medinfo/medinfo/aboutuc.html Emotional Stress and Coping With Ulcerative Colitis Because body and mind are so closely interrelated, emotional stress can influence the course of ulcerative colitis — or, for that matter, any other chronic illness. Although people occasionally experience emotional problems before a flare-up of their disease, this does not imply that emotional stress causes the illness. There is no evidence to show that stress, anxiety, or tension is responsible for ulcerative colitis. http://www.ccfa.org/medinfo/medinfo/aboutcd.html Emotional Factors and Coping With Crohn’s Disease Because body and mind are so closely interrelated, emotional stress can influence the course of Crohn’s disease-or, for that matter, any other chronic illness. Although people occasionally experience emotional problems before a flare-up of their disease, this does not imply that emotional stress causes the illness. There is no evidence to show that stress, anxiety, or tension is responsible for Crohn’s disease. No single personality type is more prone to develop Crohn’s than others, and no one "brings on" the disease by poor emotional control. http://www.ccfa.org/medinfo/livingwith/depression.html Everybody Gets the Blues: What to Do When It’s YOU "I do not live with Crohn’s disease; it lives with me," says Amy B. Trachter, Psy.D., Ph.D., a clinical psychologist and author of Coping with Crohn’s Disease: Manage Your Physical Symptoms and Overcome the Emotional Challenges. "There’s a big difference." Dr. Trachter agrees everyone occasionally experiences a range of negative emotions. "Most people feel angry, sad, depressed, frustrated and annoyed; those are all natural emotions to have at times." People with IBD are no different. http://www.living-better.com/faq_stress.html Q: Are mood swings normal? A: Sure! Everyone experiences mood swings. When you feel stressed out, anxious, angry, or sad, try to identify why. The source of your mood swing may be something you can control. Sit back, collect your thoughts, and think about why you’re upset. If you can’t seem to shake feelings of fear, anger, or depression, be sure to speak with your health care professional. He or she can help you find the resources you need to resolve the problem.http://www.living-better.com/understand_navigation.html http://home.pacbell.net/suehobbs/ibd/ IBD is depressing, maddening and unfair, but it’s real.  We can’t wish it away, so we have deal with it as best we can. Some say that depression is caused by anger turned inward. Those of us who live with IBD daily need to find ways to get the anger out of our systems. My outlet is writing, composing & singing. Perhaps you have your own outlet. Here I offer some things I’ve written over the years of living with Crohn’s Disease. They’re arranged in chronological order, so they’re sort of a diary of coping and healing. I hope they bless you, amuse you and/or inspire you. http://www.bizzcity.com/web/christieg/links.htm ick and tired…sick and tired…sick and tired…sick and tired…sick and tired…sick and http://www.ccfa.org/memberbenefits/festivefoods.html Parties with friends in the evenings and holiday lunches during the day with co-workers can wreak havoc with your normal, healthy eating habits. Too many temptations abound during this time — Halloween with all that chocolate, Thanksgiving with its stuffing and gravy, the super-rich and yummy desserts during holidays in December. The holiday season can be jam-packed, with shopping and planning for family get-togethers. Your stress level can go through the roof, and your eating plan can go out the window! Don’t let this happen to you. With some pre-planning, you can avoid some of the stress and stay on track. http://www.wellnessbooks.com/ibd/reviews.asp Various books on IBD There are also other good forums where you can ask for advice: http://www.geocities.com/HotSprings/Falls/4809/messageboards.htm http://forums.about.com/ab-ibscrohns/messages http://cgi.tripod.com/cdmessageboard/cgi-bin/YaBB.pl http://www.dragonpack.com/forums/ibdboard/ http://forum.onecenter.com/canadacrohns/ http://groups.msn.com/CrohnsDiseaseintheUK/_homepage.msnw?pgmarket=en-gb http://qurlyjoe.bu.edu/webx http://pub154.ezboard.com/bcrohnscolitismessageboard http://d1509710.u31.worldispnetwork.com/index.php http://www.ostomates.org/cgi-bin/yabb/YaBB.pl http://www.ostomy.fsnet.co.uk/links.html alt.support.ostomy

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Don’t take an anti-stress drug – they’re not the answer. What’s needed is a lifestyle – and possibly an attitude – change. Nowadays, I go to great lengths to avoid stress. Being busy is one thing, but running about like a headless chicken is another. I think things through, and if at all possible, avoid anything that’s overly stressful. I don’t feel the need to justify myself, or make excuses.

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I’m sorry but I think antidepressants drugs have a time and a place and needs to be talked about with the dr as they helped me reduce a time when I had no control over my stress and kept the edge off (and the pain some) until the stress was able to resolved.  Then I slowly weaned off the medications when I knew, with my dr’s, that I was emotionally able to deal with things without the aide of the meds.  Just my opinion from my experiences.  UM MOM Susan

– Hide quoted text — Show quoted text – Don’t take an anti-stress drug – they’re not the answer. What’s needed is a lifestyle – and possibly an attitude – change. Nowadays, I go to great lengths to avoid stress. Being busy is one thing, but running about like a headless chicken is another. I think things through, and if at all possible, avoid anything that’s overly stressful. I don’t feel the need to justify myself, or make excuses.

Response:

Please do post your results, as promised.  I’ll bet cash you’re on the right track. My SO was good health without meds for a year, until *I* was hit by a fantastic amount of stress at the end of last year (multiple family illnesses, a death in my family, back injury, work stress, blah blah blah), which he shared with me.  His obstructive CD got much worse.  It had long been obvious to both of us that stress and diet triggered his flares, and finally mega-stress triggered a mega-crisis. When he went to his old GI, I told him to ask about anti-anxiety medication. The GI said stress had nothing to do with my SO’s flares, and gave him no medication whatsoever (not even for his Crohns, much less stress).  We changed doctors. Good luck. ep

– Hide quoted text — Show quoted text – I’ve had two major flares since my surgery 4 years ago.  The first flare was about 2 1/2 years after my surgery, and it hit me out of no where, just 3 weeks before I got married.  My wife & I live in France and we were planning our wedding in the US (I’m American, from Phoenix).  I didn’t really know it at the time but it was a stressful time for me.  I took a week off work to recover, and when I went back they fired me, making it worse.  Despite that, with a high dose of Entocort and prednisone I was able to enjoy the wedding and honeymoon.  When I got back an x-ray showed 3 strictures where they had performed my surgery before. Just this week (4 years exactly after my surgery) I had my second major flare.  I thought it would pass but after 12+ hours of intense stomach pain I went to the ER.  In the past year I haven’t been in a flare but at the same time I haven’t been doing that great either.  Often I have stomach pains and feel very tired (physically, but not mentally).  Often I can’t sleep much.  Looking at my life recently, I now recognize it’s full of stress.  In December I flew back to the US to be with my stepmother who was dying of cancer. Then in January I just started a new job.  I didn’t feel stressed but I started reading up and I learned that change is stressful (even if we don’t know it). The last time I saw my regular GI was just last Tuesday and I asked her about the stress.  She didn’t want to give me any anti-stress medicine, which I really think I need.  So while I was in the hospital, I asked the GI there (a different hospital so it was good to have a second opinion) and he gave me a medicine called Nordaz (Nordiazepam is the generic name).  I just started it last night.  I am recovering from the flare, 2 days without food or water, etc. so it will take a week to see if it’s working.  But I’m glad a doctor at least listened to me and saw my point of view that I thought stress could be affecting my Crohn’s. In any case, I think I’m going to see either a pyschologist or a pyschiatrist (not sure which) to look into this stress relation more closely.  Over the past year few years my life has been stressful and I’m sure it’s why my Crohn’s has been active.  I’ve had 4 jobs since coming to France, 2 were failed start-ups and 1 was the one who fired me.  The 4th is my first job in an entirely french speaking company and that is stressful. I speak French fluently but still it’s a lot more difficult to work 100% in French than to work in English or a mix.  I’ve only been there a few weeks and I’m on a project with a really agressive budget and schedule. Everyone seems to work 45-50 hours a week there.  I think if I work 40 I will be fired.  I find myself very tense at work, like with my shoulders all tense and raised up.  When I notice I take deep breaths and relax, but then 30 minutes later I find myself in the same tense position. In summary: – got married – got fired – got a new job – company laid everyone off – was unemployed for 6 months without any unemployment – stepmother died (we were very very close) – apartment flooded – started a new job What I’ve learned is CHANGE IS STRESS.  Even if we don’t feel stressed, if we’re experiencing lots of change in our lives it can be stressful.  And it’s a vicious circle.  I’ve stopped working out because I haven’t felt well.  But by not working out I’m not relieving stress like I was!  Etc. So my question is this:  Are people in this newsgroup taking anti-stress medicine?  Does it work for you?  I’ll post my results and I hope to see yours too. -michael

Response:

With Methotrexate and Remicade it sounds like you’re getting excellent treatment.  I had to stop the methotrexate because my wife & I are trying to have a baby (also stressful I know!).  Don’t worry about the English mistakes, your English is very good and we can understand exactly what you mean.  Thanks for your reply! -michael

– Hide quoted text — Show quoted text – Hi Michael, I’m chantal from belgium, and a patient of crohndisease for more than 20 years. I did had already 8 operations and now i’m on remicade infusions together with methotrexate. You’re absolutely right about stress making crohn worse. Years ago i really had a bad marriage and later a divorce, and it was a very bad time with my health. Those days i did take cortisone and had 4 operations in a real short time. But than i did meet a nice guy got married, had a child and I was well for 8 years. lately crohn did come back and i don’t feel really good it is so rare that after all those years it did attacked again eventhough i’m happy and without stress, i only work for 13 hours/week. Try to see the positive side of live and fight it , because it is proven that thinking positive is half of the cure. As you probably noticed this note is full of english mistakes but english isn’t my home language. greetings ,chantal I’ve had two major flares since my surgery 4 years ago.  The first flare was about 2 1/2 years after my surgery, and it hit me out of no where, just 3 weeks before I got married.  My wife & I live in France and we were planning our wedding in the US (I’m American, from Phoenix).  I didn’t really know it at the time but it was a stressful time for me.  I took a week off work to recover, and when I went back they fired me, making it worse.  Despite that, with a high dose of Entocort and prednisone I was able to enjoy the wedding and honeymoon.  When I got back an x-ray showed 3 strictures where they had performed my surgery before. Just this week (4 years exactly after my surgery) I had my second major flare.  I thought it would pass but after 12+ hours of intense stomach pain I went to the ER.  In the past year I haven’t been in a flare but at the same time I haven’t been doing that great either.  Often I have stomach pains and feel very tired (physically, but not mentally).  Often I can’t sleep much.  Looking at my life recently, I now recognize it’s full of stress.  In December I flew back to the US to be with my stepmother who was dying of cancer. Then in January I just started a new job.  I didn’t feel stressed but I started reading up and I learned that change is stressful (even if we don’t know it). The last time I saw my regular GI was just last Tuesday and I asked her about the stress.  She didn’t want to give me any anti-stress medicine, which I really think I need.  So while I was in the hospital, I asked the GI there (a different hospital so it was good to have a second opinion) and he gave me a medicine called Nordaz (Nordiazepam is the generic name).  I just started it last night.  I am recovering from the flare, 2 days without food or water, etc. so it will take a week to see if it’s working.  But I’m glad a doctor at least listened to me and saw my point of view that I thought stress could be affecting my Crohn’s. In any case, I think I’m going to see either a pyschologist or a pyschiatrist (not sure which) to look into this stress relation more closely.  Over the past year few years my life has been stressful and I’m sure it’s why my Crohn’s has been active.  I’ve had 4 jobs since coming to France, 2 were failed start-ups and 1 was the one who fired me.  The 4th is my first job in an entirely french speaking company and that is stressful. I speak French fluently but still it’s a lot more difficult to work 100% in French than to work in English or a mix.  I’ve only been there a few weeks and I’m on a project with a really agressive budget and schedule. Everyone seems to work 45-50 hours a week there.  I think if I work 40 I will be fired.  I find myself very tense at work, like with my shoulders all tense and raised up.  When I notice I take deep breaths and relax, but then 30 minutes later I find myself in the same tense position. In summary: – got married – got fired – got a new job – company laid everyone off – was unemployed for 6 months without any unemployment – stepmother died (we were very very close) – apartment flooded – started a new job What I’ve learned is CHANGE IS STRESS.  Even if we don’t feel stressed, if we’re experiencing lots of change in our lives it can be stressful.  And it’s a vicious circle.  I’ve stopped working out because I haven’t felt well.  But by not working out I’m not relieving stress like I was!  Etc. So my question is this:  Are people in this newsgroup taking anti-stress medicine?  Does it work for you?  I’ll post my results and I hope to see yours too. -michael

Response:

If a person has a chronic condition, does it make sense to worry about a med that might be addictive?  You’re always gonna need it and you’re always gonna have to take it.  I don’t mean to sound sarcastic, it just seems that if the condition will last forever, so will the need for the drug. I suspect a hole in this argument and would really appreciate someone more knowledgeable explaining. Thanks. Mel

Response:

If a person has a chronic condition, does it make sense to worry about a med that might be addictive?  You’re always gonna need it and you’re always gonna have to take it.  I don’t mean to sound sarcastic, it just seems that if the condition will last forever, so will the need for the drug. I suspect a hole in this argument and would really appreciate someone more knowledgeable explaining.

Both of you are right.  In my case, I told the doc I really feel stressed out and he said to try this (nordiazepam) and see if it helps.  He wrote me a prescription for only 6 weeks.  I guess after the 6 weeks I’ll need it renewed from my regular GI.  When I got sick I went to the closest hospital with an ER and a gastro service because my normal hospital would have been about 90+ minute drive in rush hour the night I got sick.  But this ended up being good because I got a second opinion.  My normal GI wouldn’t give me anything for the stress but this one did.  So I was happy I went there. Anyway, my plan is to use the medicine as a temporary thing until I can learn natural ways to get my stress in order.  I’ve been reading up on it on the net and I plan to get out "Stress Management for Dummies" next time I’m at the bookstore.  I love those Dummies books. -michael

Response:

Hi Michael, I’m chantal from belgium, and a patient of crohndisease for more than 20 years. I did had already 8 operations and now i’m on remicade infusions together with methotrexate. You’re absolutely right about stress making crohn worse. Years ago i really had a bad marriage and later a divorce, and it was a very bad time with my health. Those days i did take cortisone and had 4 operations in a real short time. But than i did meet a nice guy got married, had a child and I was well for 8 years. lately crohn did come back and i don’t feel really good it is so rare that after all those years it did attacked again eventhough i’m happy and without stress, i only work for 13 hours/week. Try to see the positive side of live and fight it , because it is proven that thinking positive is half of the cure. As you probably noticed this note is full of english mistakes but english isn’t my home language. greetings ,chantal – Hide quoted text — Show quoted text – I’ve had two major flares since my surgery 4 years ago.  The first flare was about 2 1/2 years after my surgery, and it hit me out of no where, just 3 weeks before I got married.  My wife & I live in France and we were planning our wedding in the US (I’m American, from Phoenix).  I didn’t really know it at the time but it was a stressful time for me.  I took a week off work to recover, and when I went back they fired me, making it worse.  Despite that, with a high dose of Entocort and prednisone I was able to enjoy the wedding and honeymoon.  When I got back an x-ray showed 3 strictures where they had performed my surgery before. Just this week (4 years exactly after my surgery) I had my second major flare.  I thought it would pass but after 12+ hours of intense stomach pain I went to the ER.  In the past year I haven’t been in a flare but at the same time I haven’t been doing that great either.  Often I have stomach pains and feel very tired (physically, but not mentally).  Often I can’t sleep much.  Looking at my life recently, I now recognize it’s full of stress.  In December I flew back to the US to be with my stepmother who was dying of cancer. Then in January I just started a new job.  I didn’t feel stressed but I started reading up and I learned that change is stressful (even if we don’t know it). The last time I saw my regular GI was just last Tuesday and I asked her about the stress.  She didn’t want to give me any anti-stress medicine, which I really think I need.  So while I was in the hospital, I asked the GI there (a different hospital so it was good to have a second opinion) and he gave me a medicine called Nordaz (Nordiazepam is the generic name).  I just started it last night.  I am recovering from the flare, 2 days without food or water, etc. so it will take a week to see if it’s working.  But I’m glad a doctor at least listened to me and saw my point of view that I thought stress could be affecting my Crohn’s. In any case, I think I’m going to see either a pyschologist or a pyschiatrist (not sure which) to look into this stress relation more closely.  Over the past year few years my life has been stressful and I’m sure it’s why my Crohn’s has been active.  I’ve had 4 jobs since coming to France, 2 were failed start-ups and 1 was the one who fired me.  The 4th is my first job in an entirely french speaking company and that is stressful. I speak French fluently but still it’s a lot more difficult to work 100% in French than to work in English or a mix.  I’ve only been there a few weeks and I’m on a project with a really agressive budget and schedule. Everyone seems to work 45-50 hours a week there.  I think if I work 40 I will be fired.  I find myself very tense at work, like with my shoulders all tense and raised up.  When I notice I take deep breaths and relax, but then 30 minutes later I find myself in the same tense position. In summary: – got married – got fired – got a new job – company laid everyone off – was unemployed for 6 months without any unemployment – stepmother died (we were very very close) – apartment flooded – started a new job What I’ve learned is CHANGE IS STRESS.  Even if we don’t feel stressed, if we’re experiencing lots of change in our lives it can be stressful.  And it’s a vicious circle.  I’ve stopped working out because I haven’t felt well.  But by not working out I’m not relieving stress like I was!  Etc. So my question is this:  Are people in this newsgroup taking anti-stress medicine?  Does it work for you?  I’ll post my results and I hope to see yours too. -michael

Response:

Hi Michael, I have the same tiredness feeling as yourself and feel like I was a few years before a mega-flare in 1992 where I ended up having a panproctocolectomy resulting in an ileostomy. I am and have been in clinical remission since 1993 as defined by a CDAI of less than 150 http://www.ibdjohn.com/cdai/, but still have extraintestinal problems. I know that I cannot cope with a lot of the normal repartee and stress of daily living because I am just physically not up to it. Like yourself I am not depressed – the mind is willing – just fed up of schlepping this carcass around. I also refuse to let the docs talk me into being clinically depressed, because that is their solution if all the bloodworks are hunky-dory. My anti-stress recipe has been to find a 4-day week job. I have been very lucky in that respect and earn a decent wage to be able to afford an above averagelifestyle if I have the energy to get out and about. However, I still sometimes work 45-55 hours per week, but just imagine what it would be like if I had to work 5 days a week. Sometimes I don’t have the energy of an 80 year old. I also make it clear to friends and family that I am not able to do everything that the average 43 year old is able to do. At work it can be difficult because, although I am registered disabled here in Germany and have told my employer what is wrong with me, I do not get any special treatment at all at work and have to pull my weight just like everybody else. There is no understanding about the disease even though I am surrounded by a number of docs at work. Your listed stress events are normal for the average person, but if you are ill then the stress has a magnified effect on your physical and psychological well-being over that of the average person. The average person neglects themself in a period of stress, smokes more, drinks more alcohol, eats less healthily, does not do any sport, etc.  Just remember that diazepam (valium) and its derivatives are addictive (www.rxlist.com www.drugs.com) and are not addressing the underlying issue, which is your disease. In the short term these medications may help you, but in the long term they may make matters worse. The trouble is that you are ill, but trying to keep up with healthy individuals who have enough problems of their own just coping with their daily, chronic illness-free lives. If the average person had a bout of flu they would spend a week off work and recuperate, but we Crohn’s patients cannot do that because it would mean spending months off work and we are all scared of losing our jobs and becoming unemployable. I am also working in an all German speaking environment and understand the challenges of the language when you are so tired that you can hardly put two words together in English. Believe me I understand exactly where you are and I do not know how to get rid of this tiredness that plagues a lot of Crohn’s patients (even when they are not in a mega flare-up). Just remember you wouldn’t try to drive a car with only 3 of its 4 wheels. Like yourself I have not been doing any sport and am not able to eat very much in the way of fruit and veges because of an area in my intestine prone to blockage, which is most likely caused by adhesions after 6 operations. Have a look at how you can change your existing stress factors. For example: Can you move closer to work? Can you take the train instead of driving? Can you car-share with a colleague? Can you take a  walk at lunchtime? Can you lie-down during the day? Can you discuss how you are feeling with the company doctor and see if the accommodate you? Can you call in sick for a week or so to allow your body to rest? All the best, Vanny I’ve had two major flares since my surgery 4 years ago.  The first flare was about 2 1/2 years after my surgery, and it hit me out of no where, just 3 weeks before I got married.  My wife & I live in France and we were planning our wedding in the US (I’m American, from Phoenix).  I didn’t really know it at the time but it was a stressful time for me.  I took a week off work to recover, and when I went back they fired me, making it worse.  Despite that, with a high dose of Entocort and prednisone I was able to enjoy the wedding and honeymoon.  When I got back an x-ray showed 3 strictures where they had performed my surgery before. Just this week (4 years exactly after my surgery) I had my second major flare.  I thought it would pass but after 12+ hours of intense stomach pain I went to the ER.  In the past year I haven’t been in a flare but at the same time I haven’t been doing that great either.  Often I have stomach pains and feel very tired (physically, but not mentally).  Often I can’t sleep much.  Looking at my life recently, I now recognize it’s full of stress.  In December I flew back to the US to be with my stepmother who was dying of cancer. Then in January I just started a new job.  I didn’t feel stressed but I started reading up and I learned that change is stressful (even if we don’t know it). The last time I saw my regular GI was just last Tuesday and I asked her about the stress.  She didn’t want to give me any anti-stress medicine, which I really think I need.  So while I was in the hospital, I asked the GI there (a different hospital so it was good to have a second opinion) and he gave me a medicine called Nordaz (Nordiazepam is the generic name).  I just started it last night.  I am recovering from the flare, 2 days without food or water, etc. so it will take a week to see if it’s working.  But I’m glad a doctor at least listened to me and saw my point of view that I thought stress could be affecting my Crohn’s. In any case, I think I’m going to see either a pyschologist or a pyschiatrist (not sure which) to look into this stress relation more closely.  Over the past year few years my life has been stressful and I’m sure it’s why my Crohn’s has been active.  I’ve had 4 jobs since coming to France, 2 were failed start-ups and 1 was the one who fired me.  The 4th is my first job in an entirely french speaking company and that is stressful. I speak French fluently but still it’s a lot more difficult to work 100% in French than to work in English or a mix.  I’ve only been there a few weeks and I’m on a project with a really agressive budget and schedule.  Everyone seems to work 45-50 hours a week there.  I think if I work 40 I will be fired.  I find myself very tense at work, like with my shoulders all tense and raised up.  When I notice I take deep breaths and relax, but then 30 minutes later I find myself in the same tense position. In summary: – got married – got fired – got a new job – company laid everyone off – was unemployed for 6 months without any unemployment – stepmother died (we were very very close) – apartment flooded – started a new job What I’ve learned is CHANGE IS STRESS.  Even if we don’t feel stressed, if we’re experiencing lots of change in our lives it can be stressful.  And it’s a vicious circle.  I’ve stopped working out because I haven’t felt well.  But by not working out I’m not relieving stress like I was!  Etc. So my question is this:  Are people in this newsgroup taking anti-stress medicine?  Does it work for you?  I’ll post my results and I hope to see yours too. -michael

Response:

I’ve had two major flares since my surgery 4 years ago.  The first flare was about 2 1/2 years after my surgery, and it hit me out of no where, just 3 weeks before I got married.  My wife & I live in France and we were planning our wedding in the US (I’m American, from Phoenix).  I didn’t really know it at the time but it was a stressful time for me.  I took a week off work to recover, and when I went back they fired me, making it worse.  Despite that, with a high dose of Entocort and prednisone I was able to enjoy the wedding and honeymoon.  When I got back an x-ray showed 3 strictures where they had performed my surgery before. Just this week (4 years exactly after my surgery) I had my second major flare.  I thought it would pass but after 12+ hours of intense stomach pain I went to the ER.  In the past year I haven’t been in a flare but at the same time I haven’t been doing that great either.  Often I have stomach pains and feel very tired (physically, but not mentally).  Often I can’t sleep much.  Looking at my life recently, I now recognize it’s full of stress.  In December I flew back to the US to be with my stepmother who was dying of cancer. Then in January I just started a new job.  I didn’t feel stressed but I started reading up and I learned that change is stressful (even if we don’t know it). The last time I saw my regular GI was just last Tuesday and I asked her about the stress.  She didn’t want to give me any anti-stress medicine, which I really think I need.  So while I was in the hospital, I asked the GI there (a different hospital so it was good to have a second opinion) and he gave me a medicine called Nordaz (Nordiazepam is the generic name).  I just started it last night.  I am recovering from the flare, 2 days without food or water, etc. so it will take a week to see if it’s working.  But I’m glad a doctor at least listened to me and saw my point of view that I thought stress could be affecting my Crohn’s. In any case, I think I’m going to see either a pyschologist or a pyschiatrist (not sure which) to look into this stress relation more closely.  Over the past year few years my life has been stressful and I’m sure it’s why my Crohn’s has been active.  I’ve had 4 jobs since coming to France, 2 were failed start-ups and 1 was the one who fired me.  The 4th is my first job in an entirely french speaking company and that is stressful. I speak French fluently but still it’s a lot more difficult to work 100% in French than to work in English or a mix.  I’ve only been there a few weeks and I’m on a project with a really agressive budget and schedule.  Everyone seems to work 45-50 hours a week there.  I think if I work 40 I will be fired.  I find myself very tense at work, like with my shoulders all tense and raised up.  When I notice I take deep breaths and relax, but then 30 minutes later I find myself in the same tense position. In summary: – got married – got fired – got a new job – company laid everyone off – was unemployed for 6 months without any unemployment – stepmother died (we were very very close) – apartment flooded – started a new job What I’ve learned is CHANGE IS STRESS.  Even if we don’t feel stressed, if we’re experiencing lots of change in our lives it can be stressful.  And it’s a vicious circle.  I’ve stopped working out because I haven’t felt well.  But by not working out I’m not relieving stress like I was!  Etc. So my question is this:  Are people in this newsgroup taking anti-stress medicine?  Does it work for you?  I’ll post my results and I hope to see yours too. -michael

Response:

Question:

i beg your pardon, "ibdwhyme"!!!!  i DO NOT do NOTHING but COMPLAIN!  i am here to learn and to help support others.  why are you here?  get real ibd, and grow up!!! jeffy

– Hide quoted text — Show quoted text – I’m really sick and tired of this type of post. Living with Crohn’s is very difficult. All you people do is complain. Everyone who post in this group should be a member of The Crohn’s and Colitis Foundation of America. Why should I join that group when I’m not an American?  Wouldn’t it be more productive for me to belong to the Crohn’s and Colitis Foundation Of Canada?

Response:

PS: it is not possible to have both UC and Crohn’s. Um, yes it is. I do…

I imagine you mean that you have Crohn’s colitis which is not the same as having both UC and Crohn’s.  There has never been a documented case anywhere of a person having both UC and Crohn’s at the same time.

Response:

Hi Gary, I always thought that prednisolone was the only ‘cortisone’ for IBD in Australia. I understand what your saying about the medications but I used to take Prednisolone in Victoria OZ which is 9 + years ago.   Since I moved to QLD in 1994 my tablet label says Prednisone and the GP & GI call it Prednisone with the active constituent being panafcort. Maybe we do have the two types available now Fran S QLD Australia – Hide quoted text — Show quoted text – [SNIP] Ameriica.  If you know of a chapter in Canada, then yes, by all means please Margie, Normally I don’t nitpick (blatant lie, that one!), but, Canada is not, and has never been, part of the U.S.A.  Thus, a Canadian IBD group would not be a chapter of the CCFA, just as the Oz group, ACCA, is not. This is important because drugs that are approved for use in one country may not be approved in another. Some examples… In OZ, we have Mesasal as a 5-ASA for illeal and colonic IBD. In the USA, Mesasal is not approved. In the USA Pentasa and Asacol are prescribed. But, in Oz, Pentasa and Asacol are not approved. So, we have three drug formulations, which all do the same job, that is, deliver 5-ASA to the illeum and colon, but do it differently.  Note that we are not talking about the difference between two brands of Aspirin, the mechanisms are distinctly different. This means that when I go to the USA I have to carry a large supply of Mesasal, my prescription, and a letter from my GI.  If I run out, I have no idea what I would do.  I mean that, I have only just thought of that and have *no* idea what I would do!!! In OZ, we prescribe Prednisolone, Prednisone is not even carried by pharmacies.  We all know that one gets turned into the other in the liver, (-one gets changed to -olone), so there is a ever so slightly lower level of _physical_ side-effects in Oz, but just as many psychological and emotional roller-coasters.  Whee!!! Cheers, Gary B-) —

__ – Hide quoted text — Show quoted text – Armful of chairs: Something some people would not know                    whether you were up them with or not                                       – Barry Humphries

Response:

. PS: it is not possible to have both UC and Crohn’s.

Um, yes it is. I do… — Vincent DC2.D Gm L W- T- Phwalt Skh Cta,bta+ Bco/fl A Fr++ Nn  M O H— Fo R+++! Ac+ J+ S? I—# V? Q? Tc++[Technition] E+ Keeper of The Great Book of Random Stuff www.dragonbathhouse.com ICQ# 7059807 Up the Irons! Scouting- Because Character counts Duke of Dutch Ovens [DoDo] dragonbathhouse.150m.com/klah/dutchovenfaq.htm <’cause few know what a dutch oven is Priest in charge of the pastries  "The tears of a Dragon,   For you and for me."     -Bruce Dickinson

Response:

- Hide quoted text — Show quoted text – Well, let me try to answer this one, too.  If you haven’t noticed, and obviously you have not, the majority of the posts are from people from Ameriica.  If you know of a chapter in Canada, then yes, by all means please join it.  You are correct, it surely would be more productive for you.  I hope you decide to give us a second look.  We really are a very supportive group for each other, and not just about our medical conditions either.  We talk about our families, who has had a new baby, who has gone on vacation, gotten married, divorced etc.  By the same token, whenever one of us needs a hug, a shoulder to cry on, an ear to listen to us, we are all here for each other.  We can be here for you too if you’d like.  Think about it. Also, this is not just for those WITH the diseases, but also for family members and friends to help them learn what it is like for us to live with these illnesses.  So whether it is you or a family member or friend afflicted, you are welcome here.  Be well. Sincerely,   Margie CD Class of 67 UC Class of 96

You are a strange, arrogant one aren’t you?  You’ve replied to two different people in your post yet as per usual you seem to not have a clue you’ve done so. PS: it is not possible to have both UC and Crohn’s.

Response:

Hi Gary, my insurance company says if you lose or run out of your medication in a different country what you do is contact your physician in your country and they call a pharmacy near you (have the number) and they will get the right med that is equal to the med you are not taking.  Or you can see a dr in that country, but too much work and probably delays would happen getting appts and so on.  Either way it’s a hassle.  UM MOM Susan – Hide quoted text — Show quoted text – [SNIP] Ameriica.  If you know of a chapter in Canada, then yes, by all means please Margie, Normally I don’t nitpick (blatant lie, that one!), but, Canada is not, and has never been, part of the U.S.A.  Thus, a Canadian IBD group would not be a chapter of the CCFA, just as the Oz group, ACCA, is not. This is important because drugs that are approved for use in one country may not be approved in another. Some examples… In OZ, we have Mesasal as a 5-ASA for illeal and colonic IBD. In the USA, Mesasal is not approved. In the USA Pentasa and Asacol are prescribed. But, in Oz, Pentasa and Asacol are not approved. So, we have three drug formulations, which all do the same job, that is, deliver 5-ASA to the illeum and colon, but do it differently.  Note that we are not talking about the difference between two brands of Aspirin, the mechanisms are distinctly different. This means that when I go to the USA I have to carry a large supply of Mesasal, my prescription, and a letter from my GI.  If I run out, I have no idea what I would do.  I mean that, I have only just thought of that and have *no* idea what I would do!!! In OZ, we prescribe Prednisolone, Prednisone is not even carried by pharmacies.  We all know that one gets turned into the other in the liver, (-one gets changed to -olone), so there is a ever so slightly lower level of _physical_ side-effects in Oz, but just as many psychological and emotional roller-coasters.  Whee!!! Cheers, Gary B-) —

__ – Hide quoted text — Show quoted text – Armful of chairs: Something some people would not know                    whether you were up them with or not                                       – Barry Humphries

Response:

[SNIP] Ameriica.  If you know of a chapter in Canada, then yes, by all means please

Margie, Normally I don’t nitpick (blatant lie, that one!), but, Canada is not, and has never been, part of the U.S.A.  Thus, a Canadian IBD group would not be a chapter of the CCFA, just as the Oz group, ACCA, is not. This is important because drugs that are approved for use in one country may not be approved in another. Some examples… In OZ, we have Mesasal as a 5-ASA for illeal and colonic IBD. In the USA, Mesasal is not approved. In the USA Pentasa and Asacol are prescribed. But, in Oz, Pentasa and Asacol are not approved. So, we have three drug formulations, which all do the same job, that is, deliver 5-ASA to the illeum and colon, but do it differently.  Note that we are not talking about the difference between two brands of Aspirin, the mechanisms are distinctly different. This means that when I go to the USA I have to carry a large supply of Mesasal, my prescription, and a letter from my GI.  If I run out, I have no idea what I would do.  I mean that, I have only just thought of that and have *no* idea what I would do!!! In OZ, we prescribe Prednisolone, Prednisone is not even carried by pharmacies.  We all know that one gets turned into the other in the liver, (-one gets changed to -olone), so there is a ever so slightly lower level of _physical_ side-effects in Oz, but just as many psychological and emotional roller-coasters.  Whee!!!         Cheers,                 Gary    B-) — Armful of chairs: Something some people would not know                    whether you were up them with or not                                       – Barry Humphries

Response:

I’m really sick and tired of this type of post. Living with Crohn’s is very difficult. All you people do is complain. Everyone who post in this group should be a member of The Crohn’s and Colitis Foundation of America.

Why should I join that group when I’m not an American?  Wouldn’t it be more productive for me to belong to the Crohn’s and Colitis Foundation Of Canada?

Response:

I’m really sick and tired of this type of post. Living with Crohn’s is very difficult. All you people do is complain.

Please may I answer this one first….then don’t read only those types of posts and since this IS a SUPPORT GROUP, we do tend to tell each other our problems and questions about our diseases.  After all, who would understand more about Crohns Diseas and Ulcerative Colitis than another person suffering with either or both of those dieases. Everyone who post in this group should be a member of The Crohn’s and Colitis Foundation of America. Why should I join that group when I’m not an American?  Wouldn’t it be more productive for me to belong to the Crohn’s and Colitis Foundation Of Canada?

Well, let me try to answer this one, too.  If you haven’t noticed, and obviously you have not, the majority of the posts are from people from Ameriica.  If you know of a chapter in Canada, then yes, by all means please join it.  You are correct, it surely would be more productive for you.  I hope you decide to give us a second look.  We really are a very supportive group for each other, and not just about our medical conditions either.  We talk about our families, who has had a new baby, who has gone on vacation, gotten married, divorced etc.  By the same token, whenever one of us needs a hug, a shoulder to cry on, an ear to listen to us, we are all here for each other.  We can be here for you too if you’d like.  Think about it. Also, this is not just for those WITH the diseases, but also for family members and friends to help them learn what it is like for us to live with these illnesses.  So whether it is you or a family member or friend afflicted, you are welcome here.  Be well. Sincerely,   Margie CD Class of 67 UC Class of 96

Response:

I’m really sick and tired of this type of post. Fine.  You don’t have to read them.  People use this NG to ask for and give [etc.]

The people on this newsgroup who have inflammatory bowel disease can respond to the initial post perfectly well. They don’t need a non-IBD "spokesperson" to stand up for them.

Response:

 Stop behaving like a stereotypical Yank; you’re giving your country a bad name.

I hope he doesn’t start acting like a stereotypical Brit and staging little tea parties, etc.

Response:

At some point there were people from India and South Africa too on this ng. We really cover all the world. Noella – Hide quoted text — Show quoted text – I’m really sick and tired of this type of post. Fine.  You don’t have to read them.  People use this NG to ask for and give support.  Sometimes that means telling everyone else that life is behaving like a Very Bad Thing and can we help to molish it better please; sometimes it means helping to molish it better for other people.  It’s what friendship is all about, and friendship is what this NG is – or rather was, and hopefully will be again – all about. Living with Crohn’s is very difficult. I think you’ll find that everyone here already knows that. All you people do is complain. You should read posts more often then, and count the "OT Humour" headings, and the "I’m doing really well" ones. Everyone who post in this group should be a member of The Crohn’s and Colitis Foundation of America. Why?  You think Americans are the only people who post here? What about those from Canada or from Europe?  Do we have any South Americans here?  Asians?  I know there are Australians here and at least one New Zealander.  Stop behaving like a stereotypical Yank; you’re giving your country a bad name. — Fran Teach my children not to speak to strangers? Good grief no.  Everyone I know was a stranger to me once – including my very best friends.

Response:

you got a problem there bud?

– Hide quoted text — Show quoted text – I’m really sick and tired of this type of post. Living with Crohn’s is very difficult. All you people do is complain. Everyone who post in this group should be a member of The Crohn’s and Colitis Foundation of America. The IBD Bill is before Congress. Does anybody know what that means? What have you done about it? Go to the Crohn’s and Colitis Foundation of America web site http://www.ccfa.org/ and join. Get off your lazy, smelly, zit covered ass! Check out this link http://www.ccfa.org/news/ibdbilloverview.htm . Get involved. DEMAND A CURE. More people will spam me than join The Crohn’s and Colitis Foundation of America. More people in this group will HATE me than hate the disease.It shows just how mentally disturbed you people are.

Response:

the bum is not worth the effort.

– Hide quoted text — Show quoted text – As for hating you, I for one have better things to do with my time. David Crohns class of ‘84 Ileostomy Class of 2001 Amen to that David….talk about self-centered? I think someone needs a good old fashioned kick in the butt…

Response:

sure is isn’t it? unbelieveable!

– Hide quoted text — Show quoted text – I find it extremely ironic that someone who posts with the handle IBDwhyME would comment on how people complain and feel sorry for themselves.  ;-) Ann I’m really sick and tired of this type of post. Living with Crohn’s is very difficult. All you people do is complain. Everyone who post in this group should be a member of The Crohn’s and Colitis Foundation of America. The IBD Bill is before Congress. Does anybody know what that means? What have you done about it? Go to the Crohn’s and Colitis Foundation of America web site http://www.ccfa.org/ and join. Get off your lazy, smelly, zit covered ass! Check out this link http://www.ccfa.org/news/ibdbilloverview.htm . Get involved. DEMAND A CURE. More people will spam me than join The Crohn’s and Colitis Foundation of America. More people in this group will HATE me than hate the disease.It shows just how mentally disturbed you people are.

Response:

I’m really sick and tired of this type of post.

Fine.  You don’t have to read them.  People use this NG to ask for and give support.  Sometimes that means telling everyone else that life is behaving like a Very Bad Thing and can we help to molish it better please; sometimes it means helping to molish it better for other people.  It’s what friendship is all about, and friendship is what this NG is – or rather was, and hopefully will be again – all about. Living with Crohn’s is very difficult.

I think you’ll find that everyone here already knows that. All you people do is complain.

You should read posts more often then, and count the "OT Humour" headings, and the "I’m doing really well" ones. Everyone who post in this group should be a member of The Crohn’s and Colitis Foundation of America.

Why?  You think Americans are the only people who post here?   What about those from Canada or from Europe?  Do we have any South Americans here?  Asians?  I know there are Australians here and at least one New Zealander.  Stop behaving like a stereotypical Yank; you’re giving your country a bad name. — Fran Teach my children not to speak to strangers? Good grief no.  Everyone I know was a stranger to me once – including my very best friends.

Response:

A friend of mine died 2 nights ago ..she had surgery and had been in the hospital over a month…she had been off the ventilator and dialysis for about 10 days and we thought she was improving and she suddenly went downhill and got done in by septic shock….she was exactly my age, 55, and left a 6 yr old grandson…that’s the  only real alternative to life.

I am so sorry  to hear of the loss of your friend.  My love to you and the family she left behind.  UM MOM Susan

– Hide quoted text — Show quoted text – How do you know we don’t belong to CCFA or its corollary in other countries?   How do you know we aren’t active in seeking out support for research?  At least we are LIVING with this disease…the alternative is not even thinkable. A friend of mine died 2 nights ago ..she had surgery and had been in the hospital over a month…she had been off the ventilator and dialysis for about 10 days and we thought she was improving and she suddenly went downhill and got done in by septic shock….she was exactly my age, 55, and left a 6 yr old grandson…that’s the  only real alternative to life. Not everyone who posts here is "complaining" but some are very sick….and those who are not try to give hope and encouragement to those who need it….and insert the occasional bit of humor…. so get over yourself…I don’t hate you…I doubt anyone on this ng does…you sound like a very unhappy person… if you don’t like the posts you don’t have to read them….perhaps there are other support groups more to your liking…. I’m really sick and tired of this type of post. Living with Crohn’s is very difficult. All you people do is complain. Everyone who post in this group should be a member of The Crohn’s and Colitis Foundation of America. The IBD Bill is before Congress. Does anybody know what that means? What have you done about it? Go to the Crohn’s and Colitis Foundation of America web site http://www.ccfa.org/ and join. Get off your lazy, smelly, zit covered ass! Check out this link http://www.ccfa.org/news/ibdbilloverview.htm . Get involved. DEMAND A CURE. More people will spam me than join The Crohn’s and Colitis Foundation of America. More people in this group will HATE me than hate the disease.It shows just how mentally disturbed you people are.

Response:

If you look down the group you will see I resposted about the IBD ACT.  I have writen multiple letters to my representatives, to the president and to some representatives that are for the bill that aren’t my representative.  I am also a member of the ccfa and had a letter writing campaign going on with the help of a few of the people on this group.   So as for trying to do something, I have been and will continue to.  I have also written to pharmaceutical companies about using their ad campaign monies that they use for Remicade and all the rest of the rx’s and told them to put this money towards a cure of this dreaded disease.  Have you read the ccfa (USA) Focus magazine?  It talks about how desperately people need to write even if they already have to do it again.  Yes  a lot are in flares right now and are complaining and whining about their disease.  But isn’t this what the support group is for?  Suspport?  UM MOM Susan

Susan, I wouldn’t even waste my time or breath responding to an ignoramus like this. Someone like this goes in my killfile. I have enough to deal with (yes, you could even say I’m whining)without listening to some doofus criticizing me.   I’ve been a member of CCFA for 10 years, and I’ve found more support here in the past few weeks. Gayle

Response:

First off I’m going to assume that your subject is what you consider most of our posts to be about. The first part of it is true in any case no two people suffer IBD the same way. As to the second pain affects us all differently. What may be agonising for one, may be merely an inconvenience to another. Not everybody in this group is from the US. So why should we belong to the CCFA, worthy organisation though it is. Most of us belong to whatever group there is where we reside. In my case I belong to ACCA (Australian Crohns & Colitis Association) You can’t DEMAND a cure, you can’t even ask very nicely for one. Cures require research and research costs big $$$.  Roughly 75 cents in every dollar raised disappears before it even gets to the researchers. This is true of all research not just IBD. Governments can’t legislate cures either. If the posts in this ng offend you so much, why bother subscribing? ASCC exists so people can bitch about their IBD, it’s about the only place we can and have other people understand what we go through. The complaining is theraputic and so is the support we get from each other. What’s the point in hating the disease? All that’s going to do is make it worse. As for hating you, I for one have better things to do with my time. David Crohns class of ‘84 Ileostomy Class of 2001 -___ Bad things happen to good people, unfortunately the converse is also true

Response:

As for hating you, I for one have better things to do with my time. David Crohns class of ‘84 Ileostomy Class of 2001

Amen to that David….talk about self-centered? I think someone needs a good old fashioned kick in the butt…

Response:

You show alot of spark there skippy! Your heart is in the right place. Maybe if you directed your energy in other avenues, instead of slamming your fellow sufferes, you might actually make a difference. For there is no shortage of suffering around here. You’re just "preacing to the choir"! Feel well. William – Hide quoted text — Show quoted text – I’m really sick and tired of this type of post. Living with Crohn’s is very difficult. All you people do is complain. Everyone who post in this group should be a member of The Crohn’s and Colitis Foundation of America. The IBD Bill is before Congress. Does anybody know what that means? What have you done about it? Go to the Crohn’s and Colitis Foundation of America web site http://www.ccfa.org/ and join. Get off your lazy, smelly, zit covered ass! Check out this link http://www.ccfa.org/news/ibdbilloverview.htm . Get involved. DEMAND A CURE. More people will spam me than join The Crohn’s and Colitis Foundation of America. More people in this group will HATE me than hate the disease.It shows just how mentally disturbed you people are.

Response:

I find it extremely ironic that someone who posts with the handle IBDwhyME would comment on how people complain and feel sorry for themselves.  ;-) Ann

– Hide quoted text — Show quoted text – I’m really sick and tired of this type of post. Living with Crohn’s is very difficult. All you people do is complain. Everyone who post in this group should be a member of The Crohn’s and Colitis Foundation of America. The IBD Bill is before Congress. Does anybody know what that means? What have you done about it? Go to the Crohn’s and Colitis Foundation of America web site http://www.ccfa.org/ and join. Get off your lazy, smelly, zit covered ass! Check out this link http://www.ccfa.org/news/ibdbilloverview.htm . Get involved. DEMAND A CURE. More people will spam me than join The Crohn’s and Colitis Foundation of America. More people in this group will HATE me than hate the disease.It shows just how mentally disturbed you people are.

Response:

How do you know we don’t belong to CCFA or its corollary in other countries?   How do you know we aren’t active in seeking out support for research?  At least we are LIVING with this disease…the alternative is not even thinkable. A friend of mine died 2 nights ago ..she had surgery and had been in the hospital over a month…she had been off the ventilator and dialysis for about 10 days and we thought she was improving and she suddenly went downhill and got done in by septic shock….she was exactly my age, 55, and left a 6 yr old grandson…that’s the  only real alternative to life. Not everyone who posts here is "complaining" but some are very sick….and those who are not try to give hope and encouragement to those who need it….and insert the occasional bit of humor…. so get over yourself…I don’t hate you…I doubt anyone on this ng does…you sound like a very unhappy person… if you don’t like the posts you don’t have to read them….perhaps there are other support groups more to your liking…. – Hide quoted text — Show quoted text – I’m really sick and tired of this type of post. Living with Crohn’s is very difficult. All you people do is complain. Everyone who post in this group should be a member of The Crohn’s and Colitis Foundation of America. The IBD Bill is before Congress. Does anybody know what that means? What have you done about it? Go to the Crohn’s and Colitis Foundation of America web site http://www.ccfa.org/ and join. Get off your lazy, smelly, zit covered ass! Check out this link http://www.ccfa.org/news/ibdbilloverview.htm . Get involved. DEMAND A CURE. More people will spam me than join The Crohn’s and Colitis Foundation of America. More people in this group will HATE me than hate the disease.It shows just how mentally disturbed you people are.

Response:

If you look down the group you will see I resposted about the IBD ACT.  I have writen multiple letters to my representatives, to the president and to some representatives that are for the bill that aren’t my representative.  I am also a member of the ccfa and had a letter writing campaign going on with the help of a few of the people on this group.   So as for trying to do something, I have been and will continue to.  I have also written to pharmaceutical companies about using their ad campaign monies that they use for Remicade and all the rest of the rx’s and told them to put this money towards a cure of this dreaded disease.  Have you read the ccfa (USA) Focus magazine?  It talks about how desperately people need to write even if they already have to do it again.  Yes  a lot are in flares right now and are complaining and whining about their disease.  But isn’t this what the support group is for?  Suspport?  UM MOM Susan

– Hide quoted text — Show quoted text – I’m really sick and tired of this type of post. Living with Crohn’s is very difficult. All you people do is complain. Everyone who post in this group should be a member of The Crohn’s and Colitis Foundation of America. The IBD Bill is before Congress. Does anybody know what that means? What have you done about it? Go to the Crohn’s and Colitis Foundation of America web site http://www.ccfa.org/ and join. Get off your lazy, smelly, zit covered ass! Check out this link http://www.ccfa.org/news/ibdbilloverview.htm . Get involved. DEMAND A CURE. More people will spam me than join The Crohn’s and Colitis Foundation of America. More people in this group will HATE me than hate the disease.It shows just how mentally disturbed you people are.

Response:

I’m really sick and tired of this type of post. Living with Crohn’s is very difficult. All you people do is complain. Everyone who post in this group should be a member of The Crohn’s and Colitis Foundation of America. The IBD Bill is before Congress. Does anybody know what that means? What have you done about it? Go to the Crohn’s and Colitis Foundation of America web site http://www.ccfa.org/ and join. Get off your lazy, smelly, zit covered ass! Check out this link http://www.ccfa.org/news/ibdbilloverview.htm . Get involved. DEMAND A CURE. More people will spam me than join The Crohn’s and Colitis Foundation of America. More people in this group will HATE me than hate the disease.It shows just how mentally disturbed you people are.

Response:

Question:

you are very welcome. stella

Response:

Thanks Stella, I’ll check it out!! – Hide quoted text — Show quoted text – hi Mary……got something interesting in the mail from the Greater New York Chapter of CCFA. i’m going on Aug 27th. Summer Drop-In Mutual Help Groups take a few minutes out of your busy lives to connect with others who are also living with crohn’s disease or ulcerative colitis. Dates: monday, july 30,2001           monday, august 27,  2001 Time: 6:30 pm – 8:30 pm Place: CCFA – National Office           386 Park Ave South 17th Floor            (between 27th and 28th streets) here’s  their # (212) 679 – 1570 hope this is useful to you. be well; stella

Response:

Pearl, I am sorry, I had meant that I looked on the CCFA website to see if there was a group meeting (in person) in the NYC area for Crohn’s sufferers. On the CCFA website, where they list the chapters, there is a listing for group meetings in Westchester County in NY and I am close to that, but I would rather go to a meeting in NYC since that is where I work. Mary – Hide quoted text — Show quoted text – Mary, I would not rely on a website for support groups. I would call and ask for personal contacts in your area and ask. When I ran a CCFA chapter there were many informal get togethers. I even had one on one meetings when necessary. Oftentimes wonderful friendships can grow out of such contacts. — Pearl. L Just looked to see if there were any support groups in NYC area…don’t see any listed on the CCFA site. If there are can anyone let me know? Thanks Mary

Response:

hi Mary……got something interesting in the mail from the Greater New York Chapter of CCFA. i’m going on Aug 27th. Summer Drop-In Mutual Help Groups take a few minutes out of your busy lives to connect with others who are also living with crohn’s disease or ulcerative colitis. Dates: monday, july 30,2001            monday, august 27,  2001 Time: 6:30 pm – 8:30 pm Place: CCFA – National Office            386 Park Ave South 17th Floor             (between 27th and 28th streets)  here’s  their # (212) 679 – 1570 hope this is useful to you. be well; stella

Response:

Give CCFA a call, they run support groups in Manhattan for a few months I believe a couple of times of year. – Hide quoted text — Show quoted text -Just looked to see if there were any support groups in NYC area…don’t see any listed on the CCFA site. If there are can anyone let me know? Thanks Mary

Response:

Mary, I would not rely on a website for support groups. I would call and ask for personal contacts in your area and ask. When I ran a CCFA chapter there were many informal get togethers. I even had one on one meetings when necessary. Oftentimes wonderful friendships can grow out of such contacts. — Pearl. L

– Hide quoted text — Show quoted text – Just looked to see if there were any support groups in NYC area…don’t see any listed on the CCFA site. If there are can anyone let me know? Thanks Mary

Response:

Just looked to see if there were any support groups in NYC area…don’t see any listed on the CCFA site. If there are can anyone let me know? Thanks Mary

Response:

Question:

Unpreidtability is an understatement. I have  had the same problems you were speaking of , dr’s telling you, you have pain, but it is in your head, then finally the cd will show up ( I have been told that it takes up til 10 years for it to show up on x-rays, tests,etc.) And now, I had 2 total blockages (Aug/Feb) resulting in 2 bowel resections (total of 4 in the past 17 years). My surgeon says the cd is active and I need aggressive drug therapy, or I will be right back in the OR, the gi says no. I can’t work, been trying to get on disability they’ve turned me down 2x’s. So, what are you suppose to do or who to believe? I have made an appt to interview another gi?????? Just letting you know don’t feel like the lone ranger!!!!! tonya    good luck to you

Response:

I believe Dipentum works only with the assistance of bacteria in the colon, so it can work for either UC or CD of the colon, but not CD in the small intestine.  Pentasa starts to release in the small intestine and continues into the colon.  If you don’t feel much different on either, it’s possible neither is working for you.

Response:

Dear Michelle, My heart goes out to you.  Being so young and having this illness cannot be very easy on you.  I was 24 years old when I started having Ulcerative Colitis and the doctor did put me on Prednisone.  For me, it did not work.  It got me very depressed, I was always crying and I started swelling up like a watermelon. I now take ASACOL and it really helps me control my flare-ups.  However, for such a young lady as you,  I presume you are seeing a specialist in Gastroenterology. Also, do not be afraid to get a second opinion, I had to go through 3 specialist before I found a nice women doctor who took the time to explain my symptoms and made me feel like she cared about me. I live in Toronto and can give you her name and number if you wish.  You may not be from my area but if  you are, write back and I will send you her name and address. You should also look into finding a support group for teenagers living with Crohn’s disease.  You could find it very helpful to discuss and talk to people your age who are suffering as you are.  It’s a great way to also get other teenagers opinions, what doctors their seeing…. etc. Do not give up Michelle, I’m thinking of you and will have you in my prayers tonight. Someone who cares! Anna-Maria – Hide quoted text — Show quoted text – My name is Michelle,  I was diagnosed with crohn’s when i was 12 that was just 2 1/2 yrs ago.  My doctor has tried prednisone also but it doesn’t seem to help.  I really wish i could find a doctor who could help me. have any suggestions, my mom will go to any lengths at this time.    thanks, Michelle

Response:

Michelle, I am sorry to hear that your doctor has not been able to help you.  I have had a hard time with my doctor as well.  My specialist is great, and told me that many doctors do not have the time to educate themselves about all of the different diseases.  ( They should, it’s their job.) Her suggestion was to do as much research as I could, by reading, checking the internet, going to the library, and then taking my research to my doctor.  I did this, and he was very appreciative.  It also helped him to treat me better.  I guess what I am trying to say, is if you have no luck finding a doctor who knows the disease, take all the research you can find, and give it to your doctor.  If all else fails, at least you will know as much as you can about your disease. I hope you feel better soon.  Keep coming to this newsgroup, though, we all understand what you are going through, and care about you.  If you would prefer to talk with folks your own age, there were some sights posted here within the last couple of days that might be of interest to you. Good luck, and take care of yourself, you are not alone. Trish. – Hide quoted text — Show quoted text – My name is Michelle,  I was diagnosed with crohn’s when i was 12 that was just 2 1/2 yrs ago.  My doctor has tried prednisone also but it doesn’t seem to help.  I really wish i could find a doctor who could help me. have any suggestions, my mom will go to any lengths at this time.    thanks, Michelle

Response:

My name is Michelle,  I was diagnosed with crohn’s when i was 12 that was just 2 1/2 yrs ago.  My doctor has tried prednisone also but it doesn’t seem to help.  I really wish i could find a doctor who could help me. have any suggestions, my mom will go to any lengths at this time.    thanks, Michelle

Response:

Chris- I think that CD is definitely unpredictable.  My doc agrees with that theory. He agrees that stress can trigger a flare, that diet can aggravate a flare, but other than that, it’s really a "crapshoot"  - if you pardon the pun…. : )   I don’t have experience with either of those drugs, but I have tried quite a few others, and I find that what works for you one time, may not necessarily work the second…. I think it’s great that you have such a wonderful GI (I’m lucky there too), and it’s okay to have differences of opinion.  The key is for them to listen to what you have to say.  I hope that you have luck with whatever you choose…. Be well- Tracy my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

Response:

From what I’ve seen Pentasa and Asacol work similarly for me.  Dipentum gave me major diarrhea, as a matter of fact, I have that drug to thank for my first ever bout of incontinence My doctors have agreed for the most part that theoretically Pentasa is more for CD than any of the others due to where the meds are released, supposedly higher, targeting the small intestine.  Since I don’t see a difference between Asacol and Pentasa I choose to stay with the Pentasa on their advice.  5-ASA drugs are far from a miracle for me and I’m thankful that I have found 6-mp which seems to be working for me so far.  You may want to consider bigger guns than 5-ASA meds too depending on how often and how badly you flare, etc… If you think that you feel better taking the dipentum I might consider arguing to switch.  I have even heard of people taking a 1/2 dose of two different 5-asa drugs.  If you feel equally on either or, than I probably wouldn’t worry about it. -Kim – Hide quoted text — Show quoted text – i’m going to give a brief history of my crohn’s disease.  at least as brief as possible.  please give me your oppinions on what i have to say.  there will be some questions on treatment involved, as well as some oppinions. i first noticed my crohn’s symptoms when i was about 15.  i am currently 28.  i was diagnosed with crohn’s at about 21 when i suffered from a bleeding ulcer. anyway, the doc that diagnosed me in the hospital (it turns out that my regular doc i saw for years basically told me i was a hypocondriac and all my pains were in my head even though i had fissures and fistulas and diareah and all sorts of gut and arthritis pains) anyway, this doc put me on pred. and dipentum.  i was then pretty good for about 4 years, even though all i did was drink beer and smoke pot.  i was in college after all.  i wasn’t even very good at keeping up with my meds.  i wasn’t on the steroids very long, just long enough to get over the ulcer.  my doc told me that beer wasn’t really that great for crohn’s, but i was in college so it was "now or never", but what i really needed was a good nite’s sleep every nite and not to overwork myself. well, after 4 or 5 years i moved to texas.  i needed money and was waiting tables (very stressful) and at one point was working overtime for about 3 weeks.  next thing i know my fistula is acting up, my meds have run out and i need a new doc.  I got a reccomendation from my ohio doc and went to see him to get a new Rx for prednisone.  he was a surgeon, so he gave me the roids and sent me to someone he trusted, my current GI. since i have seen this new GI, who i really trust because we have had great talks and i’ve been to his house, his wife knew my wife before i was even sent to him, we are just really close… anyway, i really trust this GI, but we differ on one thing.  He says dipentum, which i used to be on, is only good for UC.  he put me on pentasa and 6mp.  since i’ve been seeing my current doc i’ve been in for many flare ups and went to the emergency room once for another bleeding ulcer. i really trust this guy.  he has me come in regularly just so we can shoot the shit, so to speak.  he has made me understand that many crohn’s stress problems can be beaten before they break out by working out problems before they start. he’s great at that.  it’s like he’s a psyciatrist as well as a GI.  but really, would dipentum treat me better.  this is what i keep wondering.  he’s the dr. and he hasn’t steered me wrong on anything else, but i have this feeling that he’s wrong about this.  i’ve brought it up with him and even given him my old dr.’s # so they could talk.  he says that there has been a lot of research done between now and then.  the crazy thing is i don’t feel any different on either drug.  to me crohn’s seems to hit when it wants, no matter what. i know this has been a long and meandering letter, but to anyone who has bothered to read, please give me your oppinions. thanks, chris

Response:

isn’t THAT the truth!

– Hide quoted text — Show quoted text – "…to me Crohns seems to hit when it wants, no matter what…." pretty much sums it up for me too. Roz

Response:

Chris, I’m 34. I was diagnosed with Crohn’s in 1992. When I was a little girl, I used to have lots of flare ups (vomitting, diarrhea, gastros, stomach cramps). My mother brought me to the doctor more than my brother and sisters but he was a general practicioner and could not determine what it was I had. But even with those ups and downs I could continue to live a normal life. In 1989, I bought a house with my boyfriend. In 1990 we got married. In 1991 I got pregnant and things started to deteriorate in my marriage, I decided to abort the pregnancy (personal decision, please don’t share your thoughts on that: it’s too controversial). In 1992 we divorced and I spend one month in the hospital. That’s when my doctor diagnosed Crohn’s. I was so sick, my family thought I was going to die. The doctors put me on prednisone, flagyl and other drugs during my stay at the hospital. None works. They just stopped the disease from continuing to grow. Finally, a research doctor started me on cyclosporine (I did not want to have surgery!). That’s when I started to see my intestine get better. The inflammation and ulcers finally went away and I got out of the hospital. I continued taking Prednisone until I could get rid of it (you can’t stop at once as you know, you have to diminish until you can stop). Then I was without drugs for one year. Then I changed jobs and the stress level went up: I had a bout of Crohn’s. That’s when my doctor (new guy) started me on Pentasa. It worked well for me and has been working well since then. My current doctor says that not all people react the same way to the medication. If it works for me, it does not mean it will work for others. Maybe you can discuss that with your current GI. Ciao!

Response:

"…to me Crohns seems to hit when it wants, no matter what…." pretty much sums it up for me too. Roz – Hide quoted text — Show quoted text – i’m going to give a brief history of my crohn’s disease.  at least as brief as possible.  please give me your oppinions on what i have to say.  there will be some questions on treatment involved, as well as some oppinions. i first noticed my crohn’s symptoms when i was about 15.  i am currently 28.  i was diagnosed with crohn’s at about 21 when i suffered from a bleeding ulcer. anyway, the doc that diagnosed me in the hospital (it turns out that my regular doc i saw for years basically told me i was a hypocondriac and all my pains were in my head even though i had fissures and fistulas and diareah and all sorts of gut and arthritis pains) anyway, this doc put me on pred. and dipentum.  i was then pretty good for about 4 years, even though all i did was drink beer and smoke pot.  i was in college after all.  i wasn’t even very good at keeping up with my meds.  i wasn’t on the steroids very long, just long enough to get over the ulcer.  my doc told me that beer wasn’t really that great for crohn’s, but i was in college so it was "now or never", but what i really needed was a good nite’s sleep every nite and not to overwork myself. well, after 4 or 5 years i moved to texas.  i needed money and was waiting tables (very stressful) and at one point was working overtime for about 3 weeks.  next thing i know my fistula is acting up, my meds have run out and i need a new doc.  I got a reccomendation from my ohio doc and went to see him to get a new Rx for prednisone.  he was a surgeon, so he gave me the roids and sent me to someone he trusted, my current GI. since i have seen this new GI, who i really trust because we have had great talks and i’ve been to his house, his wife knew my wife before i was even sent to him, we are just really close… anyway, i really trust this GI, but we differ on one thing.  He says dipentum, which i used to be on, is only good for UC.  he put me on pentasa and 6mp.  since i’ve been seeing my current doc i’ve been in for many flare ups and went to the emergency room once for another bleeding ulcer. i really trust this guy.  he has me come in regularly just so we can shoot the shit, so to speak.  he has made me understand that many crohn’s stress problems can be beaten before they break out by working out problems before they start. he’s great at that.  it’s like he’s a psyciatrist as well as a GI. but really, would dipentum treat me better.  this is what i keep wondering.  he’s the dr. and he hasn’t steered me wrong on anything else, but i have this feeling that he’s wrong about this.  i’ve brought it up with him and even given him my old dr.’s # so they could talk.  he says that there has been a lot of research done between now and then.  the crazy thing is i don’t feel any different on either drug.  to me crohn’s seems to hit when it wants, no matter what. i know this has been a long and meandering letter, but to anyone who has bothered to read, please give me your oppinions. thanks, chris

Response:

i’m going to give a brief history of my crohn’s disease.  at least as brief as possible.  please give me your oppinions on what i have to say.  there will be some questions on treatment involved, as well as some oppinions. i first noticed my crohn’s symptoms when i was about 15.  i am currently 28.  i was diagnosed with crohn’s at about 21 when i suffered from a bleeding ulcer. anyway, the doc that diagnosed me in the hospital (it turns out that my regular doc i saw for years basically told me i was a hypocondriac and all my pains were in my head even though i had fissures and fistulas and diareah and all sorts of gut and arthritis pains) anyway, this doc put me on pred. and dipentum.  i was then pretty good for about 4 years, even though all i did was drink beer and smoke pot.  i was in college after all.  i wasn’t even very good at keeping up with my meds.  i wasn’t on the steroids very long, just long enough to get over the ulcer.  my doc told me that beer wasn’t really that great for crohn’s, but i was in college so it was "now or never", but what i really needed was a good nite’s sleep every nite and not to overwork myself. well, after 4 or 5 years i moved to texas.  i needed money and was waiting tables (very stressful) and at one point was working overtime for about 3 weeks.  next thing i know my fistula is acting up, my meds have run out and i need a new doc.  I got a reccomendation from my ohio doc and went to see him to get a new Rx for prednisone.  he was a surgeon, so he gave me the roids and sent me to someone he trusted, my current GI.   since i have seen this new GI, who i really trust because we have had great talks and i’ve been to his house, his wife knew my wife before i was even sent to him, we are just really close… anyway, i really trust this GI, but we differ on one thing.  He says dipentum, which i used to be on, is only good for UC.  he put me on pentasa and 6mp.  since i’ve been seeing my current doc i’ve been in for many flare ups and went to the emergency room once for another bleeding ulcer. i really trust this guy.  he has me come in regularly just so we can shoot the shit, so to speak.  he has made me understand that many crohn’s stress problems can be beaten before they break out by working out problems before they start. he’s great at that.  it’s like he’s a psyciatrist as well as a GI.  but really, would dipentum treat me better.  this is what i keep wondering.  he’s the dr. and he hasn’t steered me wrong on anything else, but i have this feeling that he’s wrong about this.  i’ve brought it up with him and even given him my old dr.’s # so they could talk.  he says that there has been a lot of research done between now and then.  the crazy thing is i don’t feel any different on either drug.  to me crohn’s seems to hit when it wants, no matter what. i know this has been a long and meandering letter, but to anyone who has bothered to read, please give me your oppinions. thanks, chris

Response:

Question:

I heard about paxil, how good is that?  Is it available in Canada?

If you go to alt.support. social phobia they talk about paxil almost constantly. They could probably tell you all about it. I might take it too but I’m not sure. anyway, good luck with it if you do.

Response:

Whatever you decide is best for you, please be careful.  The first few weeks you are on any type of drug that affects behavior it takes a while for your body to adapt.  I didn’t sleep the first two weeks I was on my anti-depressant, but now the jittery affects have gone away.  Please make sure you have regular appointments to monitor the medicine.  I know it is hard for us shy ones, but list ALL side effects you are having.  The minor ones may be signaling larger ones to come.  I’m not saying that you should or shouldn’t take medicine to help, but please at least talk with someone, and be as open with the doctor as possible. B

Response:

No no, going to the doctor doesn’t bother me.  Believe me, living with crohn’s disease has made me not shy around medical people.  I’m more concerned about side effects that will fuck me up bad (like bugs under my skin feeling)  So i don’t want anything strong and addictive.  Also, is it ok to see a family practitioner?  I really don’t know how to go to a psychiatrist (need a referral?) plus i think i would be waiting a while, and i’m not crazy, he’ll probably do all sorts of nonsence i don’t need. "BRNICHOL" <brnic…@aol.com

wrote in message

news:20000311140251.28908.00000403@ng-fv1.aol.com… – Hide quoted text — Show quoted text -

Whatever you decide is best for you, please be careful.  The first few

weeks

you are on any type of drug that affects behavior it takes a while for

your

body to adapt.  I didn’t sleep the first two weeks I was on my

anti-depressant,

but now the jittery affects have gone away.  Please make sure you have

regular

appointments to monitor the medicine.  I know it is hard for us shy ones,

but

list ALL side effects you are having.  The minor ones may be signaling

larger

ones to come.  I’m not saying that you should or shouldn’t take medicine

to

help, but please at least talk with someone, and be as open with the

doctor as

possible. B

Response:

In article <Mpgy4.1506$1m4.34…@news1.mts.net

,

  "jason" <ja…@canada.ca

wrote:

– Hide quoted text — Show quoted text -

Are there any opinions on the message i posted the other day?  Here

is it

again: Ok, i’m 19 male, student.  I would consider my self an extremly shy

person.

I dread public speaking, even in front of small seminar classes.  I

fear

social events like parties and can only loosen up when I start

drinking.  Up

until then, I am a total stiff.  I am constantly worried about what

people

are going to think about me, so I just don’t say anything at all.  I

can’t

talk to new people, I can never work up the nerve to and moreover I

keep

fearing that i’ll have nothing to say.  Obviously then i don’t have a girlfriend.  The other day one of my professors commented on how

intelligent

I was, but how my shyness was pulling me back.  I am constantly

referred to

as "a quiet guy" among my group of friends.  Notwithstanding all this

I

desparately WANT to be more lively and active.  But I just can’t.

It’s like

there’s an invisible wall, and I can’t quite reach the top to get

over.

SO, i;ve been suffering from this since at least grade 7 (seems that

with

puberty and the maturation process all these problems came.) and I am

just

finishing my second year of university.  I am an honours stident and

next

year I start seminars.  I won’t be able to function at all in them

like this

(not that I don’t want to but b/c I really can’t) so i think it’s

time to do

something about it.  I want to break free of this cycle before my

youth is

gone.  If I go on a drug, I don’t want it to be addictive or seriously powerful (like valium) I heard about paxil, how good is that?  Is it available in Canada?

Wow, you sound exactly like me. To a tee. I feel for you. As for the drug question, I’m sorry to tell you I have no experience with them. I guess most of the people here don’t, because I posted a similar question and never got an answer. I’ve always been too chicken to try for fear of the same things you mention, and the cost is prohibitive as well, because the only way i would take them is under the supervision of a VERY good psychiatrist. Although, I think I might be ready to try it, just to see what happens. I did take an anti-depressant once, in the same family as Prozac. I can’t remember the name of it, but it was awful. It was supposed to be mild, but the very first time I took it, I went thru hell that night. Ever hear the expression, "made me want to jump out of my skin"? Well, this was it. It felt like my fingernails were vibrating, my skin was crawling. I never took any of those pills again. I flushed them all away. That was several years ago. So, whatever you do, be extremely careful. The sense I get from what I’ve read is that medication won’t do it all anyway. I think it’s supposed to calm you down enough for you to work on other methods of dealing w/shyness, like NLP or cognitive behavioral therapy. Good Luck, man, I know it’s a crapload to deal with. Sent via Deja.com http://www.deja.com/ Before you buy.

Response:

In my opinion, try to find somebody’s help, especially from a confident girl you’re not romantically interrested on and that you’ll be able to trust. Ok, it’s rare, and more difficult to find than drugs. Look for maybe around in your familly. It’s happenning to me, it seems to really help me. I maybe very lucky to have find that special girl (If you remember some of my past post about her, she is the girl I selfdisclosed to a few weeks ago. I may give you later more details on what is appenning with her and a resume of the story) IMHO drugs are an easy way. Any drugs have drawbacks and addiction problems so drugs should be and stay the hopeless last solution. Tom "jason" <ja…@canada.ca

wrote in message

news:Mpgy4.1506$1m4.34753@news1.mts.net… – Hide quoted text — Show quoted text -

Are there any opinions on the message i posted the other day?  Here is it again: Ok, i’m 19 male, student.  I would consider my self an extremly shy

person.

I dread public speaking, even in front of small seminar classes.  I fear social events like parties and can only loosen up when I start drinking.

Up

until then, I am a total stiff.  I am constantly worried about what people are going to think about me, so I just don’t say anything at all.  I can’t talk to new people, I can never work up the nerve to and moreover I keep fearing that i’ll have nothing to say.  Obviously then i don’t have a girlfriend.  The other day one of my professors commented on how

intelligent

I was, but how my shyness was pulling me back.  I am constantly referred

to

as "a quiet guy" among my group of friends.  Notwithstanding all this I desparately WANT to be more lively and active.  But I just can’t.  It’s

like

there’s an invisible wall, and I can’t quite reach the top to get over. SO, i;ve been suffering from this since at least grade 7 (seems that with puberty and the maturation process all these problems came.) and I am just finishing my second year of university.  I am an honours stident and next year I start seminars.  I won’t be able to function at all in them like

this

(not that I don’t want to but b/c I really can’t) so i think it’s time to

do

something about it.  I want to break free of this cycle before my youth is gone.  If I go on a drug, I don’t want it to be addictive or seriously powerful (like valium) I heard about paxil, how good is that?  Is it available in Canada?

Response:

Are there any opinions on the message i posted the other day?  Here is it again: Ok, i’m 19 male, student.  I would consider my self an extremly shy person. I dread public speaking, even in front of small seminar classes.  I fear social events like parties and can only loosen up when I start drinking.  Up until then, I am a total stiff.  I am constantly worried about what people are going to think about me, so I just don’t say anything at all.  I can’t talk to new people, I can never work up the nerve to and moreover I keep fearing that i’ll have nothing to say.  Obviously then i don’t have a girlfriend.  The other day one of my professors commented on how intelligent I was, but how my shyness was pulling me back.  I am constantly referred to as "a quiet guy" among my group of friends.  Notwithstanding all this I desparately WANT to be more lively and active.  But I just can’t.  It’s like there’s an invisible wall, and I can’t quite reach the top to get over. SO, i;ve been suffering from this since at least grade 7 (seems that with puberty and the maturation process all these problems came.) and I am just finishing my second year of university.  I am an honours stident and next year I start seminars.  I won’t be able to function at all in them like this (not that I don’t want to but b/c I really can’t) so i think it’s time to do something about it.  I want to break free of this cycle before my youth is gone.  If I go on a drug, I don’t want it to be addictive or seriously powerful (like valium) I heard about paxil, how good is that?  Is it available in Canada?

Response:

Question:

This is a tough question!  Itemize how much the failed treatment (medications, office visits, x-rays, blood work, colonoscopy, etc) is costing the HMO !  If you have been hospitalized, add that to the list. That may help convince him. The next thing to do is start going up the HMO chain of command.  Get on the phone and get in their face!!!  Call them everyday and bug the he!! out of them!!!  Tell them you  want to FIRE your current Dr. because he is refusing treatment for you that has worked in the past.  Have your old records (lab, treatment plan, x-rays, etc) sent from your old Dr. as proof, and have your old Dr. write a recommendation. http://208.229.231.93/health/edge/remicade2.html  This web site has some very convincing information on the administration of Remicade for fistulizing Crohn’s.  It is now the drug of choice for fistulas.  My husband , who has a fistula, is scheduled for his Remicade treatments in Jan.  At first the insurance denied it, but after a phone call from the Dr. they approved it.  I also have some information my husband’s Dr sent us in the mail.  When hubby gets home I will ask him how to scan it and send it to you.  Good luck! manycats =^..^=

http://208.229.231.93/health/edge/remicade2.html .com… – Hide quoted text — Show quoted text – Hello everyone, My name is Eric Pfeiffer, I am 22 years old and have been living with Crohn’s for six years now.  Since moving to a new town last year, I have been struggling to get good treatment for my disease.  My old specialist was wonderful, signing me up for remicade as soon as it was approved for use, always working on new treatments, and offering lots of insight on disease management. My new doctor is a disappointment.  He’s making me jump through all the hoops: prednisone, sulfasalazine, flagill, and every other drug I’ve already tried, and failed with.  So far, only two things have really helped me in the long-term; my first/only remicade treatment, and medical marijuana. Unfortunately, my doctor does not believe in either of these treatments. He thinks remicade should only be used as a "last-resort" and that medical marijuana is a scam.  Anyway, I’ve been going with his program for over six months, and my flare-ups have yet to subside.  I’ve changed my diet, started a regular exercise program, am taking yoga classes, using vitamins, and just about anything else to improve my condition.  All these things have helped, but it doesn’t stop the burning pain in my intestines, the fact that I am STILL not gaining weight, and the nearly constant flare-ups.  I also have a big problem with fistulas, which the remicade helped immensely.  My doctor doesn’t want to give me the remicade, because I’m with an HMO, and he doesn’t want the insurance company to spend the cash.  Can anyone offer me some good advice for convincing my doctor to sign me up for remicade?  Unfortunately, I cannot switch doctors, so that is not an option.  Thanks in advance. Eric Pfeiffer

Response:

Hello everyone, My name is Eric Pfeiffer, I am 22 years old and have been living with Crohn’s for six years now.  Since moving to a new town last year, I have been struggling to get good treatment for my disease.  My old specialist was wonderful, signing me up for remicade as soon as it was approved for use, always working on new treatments, and offering lots of insight on disease management. My new doctor is a disappointment.  He’s making me jump through all the hoops: prednisone, sulfasalazine, flagill, and every other drug I’ve already tried, and failed with.  So far, only two things have really helped me in the long-term; my first/only remicade treatment, and medical marijuana. Unfortunately, my doctor does not believe in either of these treatments.  He thinks remicade should only be used as a "last-resort" and that medical marijuana is a scam.  Anyway, I’ve been going with his program for over six months, and my flare-ups have yet to subside.  I’ve changed my diet, started a regular exercise program, am taking yoga classes, using vitamins, and just about anything else to improve my condition.  All these things have helped, but it doesn’t stop the burning pain in my intestines, the fact that I am STILL not gaining weight, and the nearly constant flare-ups.  I also have a big problem with fistulas, which the remicade helped immensely.  My doctor doesn’t want to give me the remicade, because I’m with an HMO, and he doesn’t want the insurance company to spend the cash.  Can anyone offer me some good advice for convincing my doctor to sign me up for remicade?  Unfortunately, I cannot switch doctors, so that is not an option.  Thanks in advance. Eric Pfeiffer

Response:

.what if you get a cold while you’re on remicade? are you supposed to skip your infusion? diane

My RD says I only to have to skip if I have a fever or infection.   Sarah L "Friends are those people who know the words to the song in your heart and sing them back to you when you have forgotten the words."  (unattributed)

Response:

That is good information to have — Thanks Rose. Duckie

– Hide quoted text — Show quoted text – Not skip, but delay. I actually did have an infusion once when I had a cold. It got very severe, very fast as a result. When the Rheumy gave me heck he said to wait 10 days. Rose

Response:

How is it going?  I thought Remicade was about as effective as Enbrel until I had my 4th infusion, then I started noticing some progress.   Noticing much fade out? — MZ after one infusion, i’d say about the same as enbrel. i’m excited to hear you had more improvement after number 4. can’t wait! diane

I found Remicade to give slower improvement, but I continued to progress for a long period of time. Enbrel seemed to give me quicker improvement, but I hit a plateau then declined.  I had some ugly tendon inflammation on my wrist, people commented on it, so it was noticeable.  After 6 months on Remicade it finally went down, but it would show up when I was paddling or rowing, but after 8-10 months it disappeared completely and has never returned. After infusion 4 or 5 we decided to increase the dose and that made a huge difference, but it happened slowly.  My Dr said he thought Remicade was a little slower acting but more sustained, with less fade.  That tracks with my experience. Give it plenty of time, for me the results have been dramatically better. — MZ — website: http://members.home.net/mzuschlag

Response:

i’m about to have my second infusion this thursday. i don’t have a cold, but i was wondering…what if you get a cold while you’re on remicade? are you supposed to skip your infusion?

Not skip, but delay. I actually did have an infusion once when I had a cold. It got very severe, very fast as a result. When the Rheumy gave me heck he said to wait 10 days. Rose

Response:

How is it going?  I thought Remicade was about as effective as

Enbrel until I had my 4th infusion, then I started noticing some progress.   Noticing much fade out? — MZ after one infusion, i’d say about the same as enbrel. i’m excited to hear you had more improvement after number 4. can’t wait! diane

Response:

i’m about to have my second infusion this thursday. i don’t have a cold, but i was wondering…what if you get a cold while you’re on remicade? are you supposed to skip your infusion? diane

They said I would not be given an infusion unless I was healthy.  They will delay infusions due to illness, but once you’re healthy they will reschedule it.  One thing about Remicade is you are on it all the time, so watch those infections. How is it going?  I thought Remicade was about as effective as Enbrel until I had my 4th infusion, then I started noticing some progress.   Noticing much fade out? — MZ website: http://members.home.net/mzuschlag

Response:

i’m about to have my second infusion this thursday. i don’t have a cold, but i was wondering…what if you get a cold while you’re on remicade? are you supposed to skip your infusion? diane

Response:

.what if you get a cold while you’re on remicade? are you supposed to skip your infusion? diane

My RD says I only to have to skip if I have a fever or infection.   Sarah L "Friends are those people who know the words to the song in your heart and sing them back to you when you have forgotten the words."  (unattributed)

Response:

That is good information to have — Thanks Rose. Duckie

– Hide quoted text — Show quoted text – Not skip, but delay. I actually did have an infusion once when I had a cold. It got very severe, very fast as a result. When the Rheumy gave me heck he said to wait 10 days. Rose

Response:

How is it going?  I thought Remicade was about as effective as Enbrel until I had my 4th infusion, then I started noticing some progress.   Noticing much fade out? — MZ after one infusion, i’d say about the same as enbrel. i’m excited to hear you had more improvement after number 4. can’t wait! diane

I found Remicade to give slower improvement, but I continued to progress for a long period of time. Enbrel seemed to give me quicker improvement, but I hit a plateau then declined.  I had some ugly tendon inflammation on my wrist, people commented on it, so it was noticeable.  After 6 months on Remicade it finally went down, but it would show up when I was paddling or rowing, but after 8-10 months it disappeared completely and has never returned. After infusion 4 or 5 we decided to increase the dose and that made a huge difference, but it happened slowly.  My Dr said he thought Remicade was a little slower acting but more sustained, with less fade.  That tracks with my experience. Give it plenty of time, for me the results have been dramatically better. — MZ — website: http://members.home.net/mzuschlag

Response:

i’m about to have my second infusion this thursday. i don’t have a cold, but i was wondering…what if you get a cold while you’re on remicade? are you supposed to skip your infusion?

Not skip, but delay. I actually did have an infusion once when I had a cold. It got very severe, very fast as a result. When the Rheumy gave me heck he said to wait 10 days. Rose

Response:

How is it going?  I thought Remicade was about as effective as

Enbrel until I had my 4th infusion, then I started noticing some progress.   Noticing much fade out? — MZ after one infusion, i’d say about the same as enbrel. i’m excited to hear you had more improvement after number 4. can’t wait! diane

Response:

i’m about to have my second infusion this thursday. i don’t have a cold, but i was wondering…what if you get a cold while you’re on remicade? are you supposed to skip your infusion? diane

They said I would not be given an infusion unless I was healthy.  They will delay infusions due to illness, but once you’re healthy they will reschedule it.  One thing about Remicade is you are on it all the time, so watch those infections. How is it going?  I thought Remicade was about as effective as Enbrel until I had my 4th infusion, then I started noticing some progress.   Noticing much fade out? — MZ website: http://members.home.net/mzuschlag

Response:

i’m about to have my second infusion this thursday. i don’t have a cold, but i was wondering…what if you get a cold while you’re on remicade? are you supposed to skip your infusion? diane

Response:

.what if you get a cold while you’re on remicade? are you supposed to skip your infusion? diane

My RD says I only to have to skip if I have a fever or infection.   Sarah L "Friends are those people who know the words to the song in your heart and sing them back to you when you have forgotten the words."  (unattributed)

Response:

That is good information to have — Thanks Rose. Duckie

– Hide quoted text — Show quoted text – Not skip, but delay. I actually did have an infusion once when I had a cold. It got very severe, very fast as a result. When the Rheumy gave me heck he said to wait 10 days. Rose

Response:

How is it going?  I thought Remicade was about as effective as Enbrel until I had my 4th infusion, then I started noticing some progress.   Noticing much fade out? — MZ after one infusion, i’d say about the same as enbrel. i’m excited to hear you had more improvement after number 4. can’t wait! diane

I found Remicade to give slower improvement, but I continued to progress for a long period of time. Enbrel seemed to give me quicker improvement, but I hit a plateau then declined.  I had some ugly tendon inflammation on my wrist, people commented on it, so it was noticeable.  After 6 months on Remicade it finally went down, but it would show up when I was paddling or rowing, but after 8-10 months it disappeared completely and has never returned. After infusion 4 or 5 we decided to increase the dose and that made a huge difference, but it happened slowly.  My Dr said he thought Remicade was a little slower acting but more sustained, with less fade.  That tracks with my experience. Give it plenty of time, for me the results have been dramatically better. — MZ — website: http://members.home.net/mzuschlag

Response:

i’m about to have my second infusion this thursday. i don’t have a cold, but i was wondering…what if you get a cold while you’re on remicade? are you supposed to skip your infusion?

Not skip, but delay. I actually did have an infusion once when I had a cold. It got very severe, very fast as a result. When the Rheumy gave me heck he said to wait 10 days. Rose

Response:

How is it going?  I thought Remicade was about as effective as

Enbrel until I had my 4th infusion, then I started noticing some progress.   Noticing much fade out? — MZ after one infusion, i’d say about the same as enbrel. i’m excited to hear you had more improvement after number 4. can’t wait! diane

Response:

i’m about to have my second infusion this thursday. i don’t have a cold, but i was wondering…what if you get a cold while you’re on remicade? are you supposed to skip your infusion? diane

They said I would not be given an infusion unless I was healthy.  They will delay infusions due to illness, but once you’re healthy they will reschedule it.  One thing about Remicade is you are on it all the time, so watch those infections. How is it going?  I thought Remicade was about as effective as Enbrel until I had my 4th infusion, then I started noticing some progress.   Noticing much fade out? — MZ website: http://members.home.net/mzuschlag

Response:

i’m about to have my second infusion this thursday. i don’t have a cold, but i was wondering…what if you get a cold while you’re on remicade? are you supposed to skip your infusion? diane

Response:

Question:

Laura… When I first was diag. with colitis I was put on asocol and salfalk suppositories ….this helped but didn’t seem to completely work. Only when I switched to enemas did I get total relief of my symptoms. GI said it was that the suppositories were not going far enouph in. The enemas worked when I laid on my left side and retained them all night (or as long as I could). I guess I was getting the medicine to the affected area better. Hope that helps. Stay well Barry

Response:

Laura- It sounds like you’ve got the idea!!!  It is wonderful that you are so concerned!  Finding this newsgroup was one of the best things that happened to me in terms of dealing with my illness.  I have become less afraid, more knowledgeable, and more positive in my attitude.  It’s nice to know that you are not alone.  And as supportive as people are, it’s hard for anyone to truly understand unless they have gone through it.  I think exposing your husband to this ng would be a very good thing for both of you. Hang in there, and try not to panic….the more you learn about IBD, the easier it will be to deal with.  Good luck to you both. Tracy

Response:

Laura… It sounds like you have a good plan of support for your husband. My wife is very supportive and it makes things so much easier. For me just knowing she is there for me no matter what happens is so important. Just hearing her say that "we will make it through this together" really helps me not feel so alone and scared. Take care Barry – Hide quoted text — Show quoted text – Thank you all so much for responding to me.  I was feeling quite alone and frustrated.  It is nice to know that there are other spouses here in similar situations. One thing that was mentioned was fear of this illness.  I know that I have not been able to get over my fear of my husband’s illness, and I know that he has a lot of fear as well.  His fear presents itself as denial, and mine as panic.  He has been doing well for so long, that when his latest flare-up started I got very scared.  I felt panicky that if he didn’t want to take the full meds prescribed to him that he wouldn’t get any better at all… and I feel very helpless when he is sick. I also have a greater appreciation for the disease after hearing your comments (from those of you suffering from IBD).  I have more empathy for my husband if he just doesn’t want to use the enemas (I was so wrapped up in the fact that he didn’t want to do them, I didn’t step back and imagine what it would be like if I had to do them myself… I wouldn’t want to either). For now, I’ve decided to support him the best I can by trying even harder not to cook things that cause him pain (which is tough since I try to eat high fibre with lots of veggies… the diets don’t mix that well!), holding his hand when he is in pain, and not nagging him about things for now.  He doesn’t need the stress.  When he’s feeling a bit better, I’ll try to talk to him about all this.  I’m going to suggest that he discuss the enemas with his GI, maybe he has some alternatives if it’s just too uncomfortable.  And, I may just go and fill the prescription to have it on hand in case he changes his mind and wants to give it another try.  As for helping him physically try them, I would be comfortable trying that, but right now I don’t think he would. Again, thank you so much for your support!  I’m going to show him the newsgroup too.  I think that he sometimes feels pretty isolated, and becoming a part of this community could help a lot too. Sorry for the LONG post, Laura Share what you know. Learn what you don’t.

Response:

Laura: I hope your husband decides to join us. No one should feel isolated because of this disease. That’s one of the BEST part of this ng. BTW, you stay too – K? Rebecca – Hide quoted text — Show quoted text – Thank you all so much for responding to me.  I was feeling quite alone and frustrated.  It is nice to know that there are other spouses here in similar situations. One thing that was mentioned was fear of this illness.  I know that I have not been able to get over my fear of my husband’s illness, and I know that he has a lot of fear as well.  His fear presents itself as denial, and mine as panic.  He has been doing well for so long, that when his latest flare-up started I got very scared.  I felt panicky that if he didn’t want to take the full meds prescribed to him that he wouldn’t get any better at all… and I feel very helpless when he is sick. I also have a greater appreciation for the disease after hearing your comments (from those of you suffering from IBD).  I have more empathy for my husband if he just doesn’t want to use the enemas (I was so wrapped up in the fact that he didn’t want to do them, I didn’t step back and imagine what it would be like if I had to do them myself… I wouldn’t want to either). For now, I’ve decided to support him the best I can by trying even harder not to cook things that cause him pain (which is tough since I try to eat high fibre with lots of veggies… the diets don’t mix that well!), holding his hand when he is in pain, and not nagging him about things for now.  He doesn’t need the stress.  When he’s feeling a bit better, I’ll try to talk to him about all this.  I’m going to suggest that he discuss the enemas with his GI, maybe he has some alternatives if it’s just too uncomfortable.  And, I may just go and fill the prescription to have it on hand in case he changes his mind and wants to give it another try.  As for helping him physically try them, I would be comfortable trying that, but right now I don’t think he would. Again, thank you so much for your support!  I’m going to show him the newsgroup too.  I think that he sometimes feels pretty isolated, and becoming a part of this community could help a lot too. Sorry for the LONG post, Laura Share what you know. Learn what you don’t.

Response:

Thank you all so much for responding to me.  I was feeling quite alone and frustrated.  It is nice to know that there are other spouses here in similar situations. One thing that was mentioned was fear of this illness.  I know that I have not been able to get over my fear of my husband’s illness, and I know that he has a lot of fear as well.  His fear presents itself as denial, and mine as panic.  He has been doing well for so long, that when his latest flare-up started I got very scared.  I felt panicky that if he didn’t want to take the full meds prescribed to him that he wouldn’t get any better at all… and I feel very helpless when he is sick. I also have a greater appreciation for the disease after hearing your comments (from those of you suffering from IBD).  I have more empathy for my husband if he just doesn’t want to use the enemas (I was so wrapped up in the fact that he didn’t want to do them, I didn’t step back and imagine what it would be like if I had to do them myself… I wouldn’t want to either). For now, I’ve decided to support him the best I can by trying even harder not to cook things that cause him pain (which is tough since I try to eat high fibre with lots of veggies… the diets don’t mix that well!), holding his hand when he is in pain, and not nagging him about things for now.  He doesn’t need the stress.  When he’s feeling a bit better, I’ll try to talk to him about all this.  I’m going to suggest that he discuss the enemas with his GI, maybe he has some alternatives if it’s just too uncomfortable.  And, I may just go and fill the prescription to have it on hand in case he changes his mind and wants to give it another try.  As for helping him physically try them, I would be comfortable trying that, but right now I don’t think he would. Again, thank you so much for your support!  I’m going to show him the newsgroup too.  I think that he sometimes feels pretty isolated, and becoming a part of this community could help a lot too. Sorry for the LONG post, Laura Share what you know. Learn what you don’t.

Response:

Because of the pain at the beginning, I had trouble getting the enema tip into my butt.  My husband offered to do them for me and they actually made me feel better.  I was eventually able to do them myself without pain or making a mess.  Have you offered to do this for him and does your intimacy level make you comfortable doing so?  You have to be very gently and angle the tip exactly the way the directions indicate in order not to cause pain.  It was painful at first, but if you take your time it should help him a lot.  Also, when you squeeze the bottle, do it slowly, otherwise he may want to just push the entire contents right back out.  Boy what a mess that makes.  Also maybe you could get him to read the newsgroup so he doesn’t feel so alone with his illness.  

Response:

Laura Welcome to the newsgroup. You and your husband have my support. I have had UC for 4 years now. I take Pentasa (which has the same active drug as Asacol, mesalamine) and I do the enemas on a regular basis. I am fortunate right now in that I only need 2-3 per month. But up until this last year I have been using them regularly, usually 2-4 per week. They are no fun at all. And the 30 min. to an hour that is needed seems like a very, very long time. And it is. But for me, I believe it is necessary. I don’t know what advice I can give you. Do not push, and it sounds like you are not pushing. The only time I have ever had any pain when using an enema, it turned out that I had a hemorrhoid getting in the way. Eventually, I had to have that taken care of. Your husband might ask the doctor about that. Also, for me the instructions that came with them seems unclear, as if the person writing the instructions had never actually administered one of these enemas themselves. It was a matter of a lot of patience, and some trial and error, too. And the belief that they would help me, which they did. The best of wishes for both of you. Howard – Hide quoted text — Show quoted text – I have been lurking on this group for sometime, and enjoy how supportive everybody is to each other. My husband has been living with Crohn’s and colitis for 7 years now, and after a long remission is experiencing a pretty severe flare- up of his colitis.  His GI prescribed an increase in asacol dosage, and an enema (can’t remember the name). My problem is that he is taking the asacol, but will not fill the prescription for the enemas. He did take some when he was diagnosed and found them painful and uncomfortable.  How can I help him?  The increase in asacol dosage has helped a little, but he is still sick, and I hope the enemas would help if he took them.  How can I support him, and get him to fill the prescription without nagging him or making him feel worse?  I just want him to get healthy again, and am worried about him. Sorry this is so long, but it’s my first posting and I need help to support him in getting well! Share what you know. Learn what you don’t.

Response:

Sorry for the long post, but…one more thing… at my last visit, my doctor

kept stressing communication is key in getting this thing under control. My doctor said he can tell at "true IBD" patient by the fact that we don’t go in just to complain.  He says a "true IBD" patient has to be brought in kicking and screaming. We all try so hard to take good care of ourselves and then ask for help when it’s truly needed. The tests and medications that keep us healthy are odd to say the least.  I don’t think we will ever grow to like them. Sue in Utah

Response:

No, that’s why we are all on this ng – to complain <BG Rebecca who figures that the more we complain the more we won’t be "true IBD" patients. . . – Hide quoted text — Show quoted text – Sorry for the long post, but…one more thing… at my last visit, my doctor kept stressing communication is key in getting this thing under control. My doctor said he can tell at "true IBD" patient by the fact that we don’t go in just to complain.  He says a "true IBD" patient has to be brought in kicking and screaming. We all try so hard to take good care of ourselves and then ask for help when it’s truly needed. The tests and medications that keep us healthy are odd to say the least. I don’t think we will ever grow to like them. Sue in Utah

Response:

I just found this site and am thrilled. My husband has had crohns for 10 years and finally got diagnosed two years ago.  I’ve been through several  of these battles! He swears taking drugs upsets his system, no matter what they are. I’ve learned to go to the docs office ( or ask him to mail prescriptions to me) and fill the prescriptiosn myself. Eventually on a bad day when he’s ready to try anything ( even an enema) they are on hand!

Response:

Laura- Welcome! I think it is wonderful that you are so concerned.  I can certainly understand you wanting him to use the meds in order to benefit him, but it’s a fine line sometimes between suggesting and nagging.  I’m the kind of person that needs to do things on my own terms, and the more people try to get me to do things, the more I back away from the idea (even when they are right!)  All I can say is try to be there for him in any way you can, whether it is to go to doctors appts. with him, cook him foods that you know won’t aggravate his condition, sit with him and hold his hand when he’s having a lot of pain, etc.  You have come to the right place for support (yes, you need it too!), and you will get a lot of good information from the wonderful people here. Good luck to both of you. Tracy

Response:

Hi Laura and welcome! Sorry I really don’t have too much advice for ya.  ;0(  I know i would not do the enemas either …… my GI had to ask me about a colonoscopy when I was waking up from the endoscopy just so he could get the colonoscopy.  I’m just so agreeable under the influence of drugs.  <VBG I know that with me …… you can’t be supportive the way you want to be with me …… i.e.  such as getting on me to take a med that i don’t want to take …… telling me to go to the doctor when i don’t want to. I have to do things in my own way and time when i want to.  Sometimes that not the best, but as the saying goes life goes on.  There are plenty of meds I won’t take because they make me actually feel worse when i’m taking them ….. so i don’t take them. Good luck …. maybe you ….. hubby and doc can sit down and see about trying an alternative medicine. Hugs Pooh – Hide quoted text — Show quoted text – I have been lurking on this group for sometime, and enjoy how supportive everybody is to each other. My husband has been living with Crohn’s and colitis for 7 years now, and after a long remission is experiencing a pretty severe flare- up of his colitis.  His GI prescribed an increase in asacol dosage, and an enema (can’t remember the name). My problem is that he is taking the asacol, but will not fill the prescription for the enemas. He did take some when he was diagnosed and found them painful and uncomfortable.  How can I help him?  The increase in asacol dosage has helped a little, but he is still sick, and I hope the enemas would help if he took them.  How can I support him, and get him to fill the prescription without nagging him or making him feel worse?  I just want him to get healthy again, and am worried about him. Sorry this is so long, but it’s my first posting and I need help to support him in getting well!

Response:

Hi Laura! I too have been "lurking" for quite awhile, but your post pulled me in.  My wife probably feels similar to you!!!  And – for what it’s worth – I don’t know what is harder sometimes, being the "sick one," or being in your shoes.  I don’t know if I’d have the patience to deal with me sometimes!!!  But anyway, I thought I’d post and try to give you the other side…maybe it will help. The most important thing is that you care, you are supportive, and you’re still around!  You sound like you’ve already got the toughest part down!!! And…your not nagging!!!!  We really appreciate you!!!  (even if we don’t always show it!) About the enemas…they’re just nasty.  The doc prescribed them for me (Rowasa was the flavor I got) in January when my UC was "moderately active."  I gave them a fighting chance, (well…maybe not a fighting chance…) but they are difficult (at least for me) for a number of reasons.  First, it took me 1/2 hour to 45 minutes just to do the darn things!  Every time I would lay on my left side, my gut would go south and back to my favorite room I go!!! Second…we have a two year old, and there isn’t a whole lot of "quiet time" left at the end of the day, and I was less than enthusiastic to give up 45 minutes of that time – especially to do the enema thing.  Oh yea…the male ego thing…OK I admit it…might have had something to do with why I stopped… And I almost forgot…why do they make  "retention enemas" a treatment for someone whose idea of retention is actually watching an entire movie without having to pause it three times for the inevitable "bathroom breaks."   Sorry…I started rambling…  Anyway, I don’t know what your husband’s particular experiences are, but believe me, I "feel his pain!!!" Anyway…on a follow up visit, the doc – and I am not advocating not taking the medication – told me I should have just admitted that I probably wasn’t going to take the darn things so that he could have made a compensating adjustment in the treatment he was prescribing.  In my case, I am back on a relatively high dose of Asacol (which wasn’t working a few years back, but seems to be now) and beginning to see light at the end of the tunnel…  Maybe if the doc knew how uncomfortable your husband was taking the enemas, he / she might be able to make an adjustment as well.  I know that sometimes the doc’s are less than responsive to our feelings – I have gone through my share – but it’s worth a shot.   Sorry for the long post, but…one more thing… at my last visit, my doctor kept stressing communication is key in getting this thing under control.  Even my ego – and sometimes I think I know everything – isn’t too big to take his advice on that! My best to you and your husband!

Response:

I think the key thing is how you communicate with him.  You could get into a debate which might lead to a fight, and that won’t help. Alternatively, you could use the principles of parallel thinking, giving both of you to lay out your thinking in parallel and then designing an appropriate course of action. I just added a paper to my Web site on this very subject — working better together using parallel thinking.  Please have a look.  The site address is below. — Jason Smith Coping with IBD? Me too! – check out http://www.passport.ca/~pax Share what you know. Learn what you don’t.

Response:

laura welcome to the family… wow…. well can i say this? having this illness is embarrassing and debilitating …and my guess is he must be feeling weak…sick…and totally humiliated…and of course enemas..well…lets face it..not the easiest thing to deal with no matter who you are or what support you have… i think that your being on here already tells something about you ..your love and concern and caring..and empathy…and wow..empathy is what a lot of our spouses (which is why they are ex spouses <g) lack… but you got it laura dont nag him…just simply talk with him and reinforce to him that he is the same man you fell in love with and married and he is not a lesser person because he has crohns… you might ask him if he needs more privacy at least with this part of the medication ( i was gonna say this "asspect " of the meds…<g.ok i said it) i have found..from counseling..from being married etc etc..ok from "experience" that as a group..(dont take this the wrong way men on here)..men..at least in our culture…regard disease of any sort as a weakness of the whole person…(my ex said i was not "who he married…crohns made me less of  a person…) men in general..i say in general..are more afraid of illness in others and in themselves..and they dont want people to see them ill .especially those they love.. he needs to know from you…consistently and quietly ..but consistently..that he IS the same…the crohns is nothing to you … at the same time he needs to know that you understand that the crohns is  a LOT to you …sound contradictory? meaning…you understand as much as possible..the pain..the embarrassment..the discomfort and yes..the fear of this illness…and how it takes over at times..one’s life..one’s career etc etc…but that although you realize the importance of all of that..and the seriousness…it doesnt change the person he is ..in your eyes..that he is not less sexy..less good looking (yeah even on pred)less bright..less kind..less loving…he is still ..him… thats gonna take a lot of effort ..patience on your part… you MIGHT be able to get him to let you go to the doctor with him when they sit and discuss treatment…that might help 1) him to feel more comfortable discussing tx with you and actually doing it.2)you to be even moreknowledgeable..and 3) the doctor to advise him..cos you will be there as a support..a giver of ideas…and also to back up the doctor in case your husband gets a bit stubborn and angry about the tx.. in other words.your presence will be a total true support… thats one suggestion … how you treat him day to day ..will make the difference…hang in cos it sounds to me like you have the right idea… remember that this disease…goes in cycles for a lot of people…and he may also be having a particularly bad "down time’ now.. i can offer both of you my prayers and strength… love to both of you annie in boston

Response:

I have been lurking on this group for sometime, and enjoy how supportive everybody is to each other. My husband has been living with Crohn’s and colitis for 7 years now, and after a long remission is experiencing a pretty severe flare- up of his colitis.  His GI prescribed an increase in asacol dosage, and an enema (can’t remember the name). My problem is that he is taking the asacol, but will not fill the prescription for the enemas. He did take some when he was diagnosed and found them painful and uncomfortable.  How can I help him?  The increase in asacol dosage has helped a little, but he is still sick, and I hope the enemas would help if he took them.  How can I support him, and get him to fill the prescription without nagging him or making him feel worse?  I just want him to get healthy again, and am worried about him. Sorry this is so long, but it’s my first posting and I need help to support him in getting well! Share what you know. Learn what you don’t.

Response:

Question:

I’m behind you too Dave, as I think everyone here is.  I think the post was just to get everyone riled up–& unfortunately it did.  You just happen to be the one they singled out.  I left a Disney board about a 2 months ago because of some of the posts.  I’ve gone back now–to just reading posts–& noticed that all the "trolls" have left since school started!! Hang in there!!! Jackie

Response:

Well I know who I AM going to ignore from now on … (see i can spell it right too). Hang in there Dave, we all love you. Deb – Hide quoted text — Show quoted text – To all, Grundman is back.  He doesn’t have IBD.  Ignor Grundman and he will go away. He just want to annoy everyone.  Ignoe Grundman he has other problems.

Response:

LOL, nope i think that was egnor.  ;0)  Or was it Egor?  <VBG Hey HappyJoy; Got them thar hooked on phonics tapes yet? Didn’t he help Dr Frankenstein make the monster? Andrew

– Cheers Robin http://www.geocities.com/Heartland/Estates/7945/ You shouldn’t have to pay for you love with your bones and your flesh, you know hell is for children.                                                   -Pat Benatar

Response:

Hey, I’m a newbie, mostly lurker and I always read Grundman’s posts and get a kick out of his sense of humor…glad you’re going to stay here Grundman ….I like you too.  Dody

Response:

Didn’t he help Dr Frankenstein make the monster? Andrew

Response:

- Hide quoted text — Show quoted text – Thanks Shaz. I’ve never been more insulted in my life by Conroy’s comment. I mean NEVER. When I think of all the shit I’ve been through with Ulcerative colitis, the YEARS of pain, the embarrasment, the surgeries, the ‘marriage’, the loss, the disrespect, the drugs, blah blah blah, this is unquestionably the most insulting comment ever directed at me. If it weren’t for my WONDERFUL ‘virtual’ friends I’ve befriended on this Godsend of a newsgroup (Genie, Christine, Steve, Pooh, Peanut, MAB, Facattus (sp), Mac, Terri) I’d leave now. What did I do to prompt this? Am I that bad? Grundman

I really don’t understand what that comment was all about. I find your posts helpful and I enjoy you STRANGE sense of humor. Rachael

Response:

Heh heh, good one. Grundman – Hide quoted text — Show quoted text – Didn’t he help Dr Frankenstein make the monster? Andrew

Response:

– Hide quoted text — Show quoted text – One last thing, and I will write no more on this cuz its moving way outta the realm of support. I tried email Mr Conroy (I waited till I could keep myself from asking him about his ancestral roots and such and simply asked why he posted), and like most ‘Trollers’, his email address is invalid. I’d like to think his comments were too.

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Hey Grundman, I like ya and am not gonna ignore ya. Kelly

Ignore Grundman.  Whomever suggested this hasn’t read many of his posts.  I have found his posts very informative and helpful.  I also share many  (not all, but I don’t agree with anyone about everything!) of his feelings, opinions and experiences. I sometimes click past some messages but if Dave (and many of the regulars in this newsgroup) has something to say about an issue, I always click and read.  Heck, his advice is even free. Garth

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Hey Grundman, I like ya and am not gonna ignore ya. Kelly

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Ignor Grundman and he will go

No doubt this is a typo–probably meant to say something obscure about IGOR Grundman, whoever that is….. John

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Hi!! I was wondering who is D.Grundman. Now I now….and this is for sure what Conroy or whoever wrote is not true. Sorry for my previous post but I was away for a little while and I was not up to date with the stuff around.. respectfully to all radek

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     I, for one, am a big girl and can make up my mind about whose posts to ignore and whose not to. We all come to this newsgroup for one reason or another. Not everyone has IBD, some have family that have it and come for a better understanding to help them. Grundman has never done anything,  that I have seen, to anyone and by the action on this post it looks like he is more than allowed to post his thoughts, comments…whatever.      Some of his posts make me smile, some show support, two things of which I continue to use this newsgroup for. I consider him my ‘friend’ and I am glad he read that mean post and it didn’t turn him away.   Terri S

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Why would someone without either CD or UC come to this newsgroup and read all the posts and offer support if they did not have the disease?   From reading Grundmans posts he obviously knows a lot about CD and UC.  He knows things that only someone with the disease would know.  know that I for one will never ignore anything he has to say.

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Hey Grundman! I couldn’t help noticing that your bad press on this message board seemed to start after your response to my questions about silicone and Crohn’s disease. You know, about staying home to play with your chest…  Well, gee, if I wasn’t offended, can’t understand why ANYBODY would be!  Granted, your comments might have been a bit insensitive in view of my bilateral mastectomies, but I also have viewed the whole thing with a sense of humor.  Just living with Crohn’s disease for 30 years requires a well developed sense of humor. So hang in there and don’t let a little negativity get to you.  Your humor is important to the group! DebbieN

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Well, I don’t want to sound corny, but all you kids support has been very invigorating to say the least! Your a WONDERFUL bunch, and I love each and every one of you for standing up for me in this ‘unusual’ time of need, but also as brothers and sisters in ‘arms’, fighting the good fight 24/7 to make the most of our shitty diseases (pun intended). I KNOW I can come across a little rough around the edges (except around my wonderful new breasts!), I assure you all I don’t do it to be mean or inconsiderate (I firmly believe my only purpose given to me by God is to make people laugh. I suck at it sometimes but I TRY!), its just that I say what I feel, a quality I pay a high price for but one I would love to see more people have (hey dude, you got a booger hanging off you’ze left nostril there). I’ve said many times before I CAN’T be serious about UC because frankly, I undoubtably would be dead right now without a sense of humor (anyone see that scene in the Money Pit where the bathtub falls through the floor all the way to the basement and Tom Hanks stands there for a second and just busts up in uncontrollable laughter? Thats me kids). A perfect example of this is Debbie here enjoying my ‘controversial’ post. If SHE got it for what it was intended for (to cheer her up and shock her into laughing her ass off) I achieved what I intended. Groovy! thanks Debbie. One last thing, and I will write no more on this cuz its moving way outta the realm of support. I tried email Mr Conroy (I waited till I could keep myself from asking him about his ancestral roots and such and simply asked why he posted), and like most ‘Trollers’, his email address is invalid. I’d like to think his comments were too. you guys are truely the coolest people in the world, barre none. I’m proud to be a member of this ‘clich’. Grundman just Grundman – Hide quoted text — Show quoted text – Hey Grundman! I couldn’t help noticing that your bad press on this message board seemed to start after your response to my questions about silicone and Crohn’s disease. You know, about staying home to play with your chest…  Well, gee, if I wasn’t offended, can’t understand why ANYBODY would be!  Granted, your comments might have been a bit insensitive in view of my bilateral mastectomies, but I also have viewed the whole thing with a sense of humor.  Just living with Crohn’s disease for 30 years requires a well developed sense of humor. So hang in there and don’t let a little negativity get to you.  Your humor is important to the group! DebbieN

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Hi, There are family members, SO’s, husband’s, wives that do come to this NG to help them better understand the diseases, to ask questions, for support.   I for one (not that my hubby isn’t supportive of me) wish my husband would read this NG.  It would give him more insight of what i go through an feel like sometimes.  ;0) Why would someone without either CD or UC come to this newsgroup and read all the posts and offer support if they did not have the disease?   From reading Grundmans posts he obviously knows a lot about CD and UC.  He knows things that only someone with the disease would know.  know that I for one will never ignore anything he has to say.

– Hugs, Robin http://www.geocities.com/Heartland/Estates/7945/ You shouldn’t have to pay for you love with your bones and your flesh, you know hell is for children.                                                   -Pat Benatar

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If there’s one thing I need, it’s a little humor now and then. And Grundman’s posts are among the funniest! So I don’t give a shit what he has or doesn’t have. Martin – Hide quoted text — Show quoted text -To all, Grundman is back.  He doesn’t have IBD.  Ignor Grundman and he will go away. He just want to annoy everyone.  Ignoe Grundman he has other problems.

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Thanks Shaz. I’ve never been more insulted in my life by Conroy’s comment. I mean NEVER. When I think of all the shit I’ve been through with Ulcerative colitis, the YEARS of pain, the embarrasment, the surgeries, the ‘marriage’, the loss, the disrespect, the drugs, blah blah blah, this is unquestionably the most insulting comment ever directed at me. If it weren’t for my WONDERFUL ‘virtual’ friends I’ve befriended on this Godsend of a newsgroup (Genie, Christine, Steve, Pooh, Peanut, MAB, Facattus (sp), Mac, Terri) I’d leave now. What did I do to prompt this? Am I that bad? Grundman – Hide quoted text — Show quoted text – ummm……Grundman DOES have a J Pouch which means he probably had IBD (ie UC) beforehand.  I think that makes him qualified to give his opinion on this group! Shaz To all, Grundman is back.  He doesn’t have IBD.  Ignor Grundman and he will go away. He just want to annoy everyone.  Ignoe Grundman he has other problems.   Shaz     Netscape Conference Address     Netscape Conference DLS Server   Additional Information:   Last Name   First Name      Shaz

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Where do you get off telling anyone to ignore anyone? IBD or not … he has yet to annoy me … and if/when he does annoy me, it will be MY decision to ignore him or not.  If you have something against him that is your business not ours. To all, Grundman is back.  He doesn’t have IBD.  Ignor Grundman and he will go away. He just want to annoy everyone.  Ignoe Grundman he has other problems.

– Cheers Robin http://www.geocities.com/Heartland/Estates/7945/ You shouldn’t have to pay for you love with your bones and your flesh, you know hell is for children.                                                   -Pat Benatar

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bylaws requiring a group member to suffer from IBD. If you have a reason Grundman’s a problem let’s hear it. I for one have enjoyed his posts and plan to continue reading them. Yours, I’m not so sure. – Hide quoted text — Show quoted text – To all, Grundman is back.  He doesn’t have IBD.  Ignor Grundman and he will go away. He just want to annoy everyone.  Ignoe Grundman he has other problems.

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Ken, How do you know that ANY of us have IBD???? I was under the (perhaps mistaken) assumption that this NG was for support… and God only knows that we all need support any way we can get it.  That’s common courtesy, pal.  Regardless of who we are or what we say or what condition our guts are in, we all have a right to be heard.  Grundman makes me laugh and I desperately need that.  I’m sorry that you are bitter… just don’t take it out on the rest of us that are just trying to get along.  It must take a really brave and secure person to completely ridicule someone that you don’t even know…  but I think that most of us here are already beyond that because we help and respect each other.  I hope that you can learn to be at peace with yourself… you can’t learn to deal effectively with others until you have.  I can’t help but think that you’d be a lot healthier and happier if you used that all of that negative energy to help someone else. Respectfully,   Chris

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To all, Grundman is back.  He doesn’t have IBD.  Ignor Grundman and he will go away. He just want to annoy everyone.  Ignoe Grundman he has other problems.

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Grundman is back.

 He doesn’t have IBD.  Ignor Grundman and he will go Sorry but WHO IS GRUNDMAN???? away. He just want to annoy everyone. Ignoe Grundman he has other problems.

If it is true what you wrote, he probably has problems with his personality. Poor… regards Radek

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ummm……Grundman DOES have a J Pouch which means he probably had IBD (ie UC) beforehand.  I think that makes him qualified to give his opinion on this group! Shaz – Hide quoted text — Show quoted text – To all, Grundman is back.  He doesn’t have IBD.  Ignor Grundman and he will go away. He just want to annoy everyone.  Ignoe Grundman he has other problems.

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