Question:

In article <I8ednYrfEZEFh6jdRVn…@comcast.com

,

 "KJ1" <peac…@comcast.net

wrote: I saw this on the Merck Manual and thought it was a much better explanation of IBS and treatment.

This must be from the publication for lay people. Here is what the Manual of Diagnosis and Treatment (that edition doctors use) has to say about IBS:

Question:

Do you have any bleeding with or without the mucus?  You say you experience discomfort pain around the belly button.  Does it move around at all?  Find yourself a second opinion, usually I prefer a learning hospital that has a gastro department with knowledge in ibd.   I have never heard of asacol being prescribed for ibs.  Other than the colonoscopy, what other tests have you had done?  There are others that have been diagnosed with non specific colitis.  Some found out that it was uc and others cd.  Like Vanny it took over 2 years to be diagnosed with cd and not having ibs and by then it was too late to tend to and I lost even more of my gut then he did.  Get the second opinion.  I don’t know anyone in Texas sorry.  UM MOM Susan

– Hide quoted text — Show quoted text – Hello All, I have been following this newsgroup for over a year now and appreciate all the insight I have gained. For a while I thought I had IBS. However, my symptoms seem a little different the majority of the IBS sufferers. Because of this I think I may have IBD or possibly Ulcerative Colitus. My "condition" has gradually worsened over the past 5 years or so after I moved from Atlanta to Dallas. Right now I usually have a Bowel Movement every other day. Sometimes following severe flare-ups, it may take 2-3 days between bowel movements. As in IBS I have to go to the bathroom multiple times during the day. However, I do not seem to have any discomfort prior to the Bowel Movement; just an extreme urge to go. The first movement usually isn’t too bad. It starts out with normal firm feces, but progresses to somewhat softer, long, flat ones. After the first movement, within the hour, I will start to experience bloating, pressure, and a "dull" discomfort below the belly button. This is followed with progressively worsening burning sensation just inside the anus. It feels like it is more inside than outside. The worse the burning gets the more the urge to go. When I can’t tolerate the burning any more I usual have to get to a bathroom. The subsequent movements have less and less feces and I usually end up passing only mucus towards the end. A "good" episode (i.e. while taking Asacol) will last about half a day and anywhere from 2 – 5 movements. A "bad" episode (i.e. no medication) will last all day, into the night (no sleep) and into the next day. I will go to the bathroom anywhere from 10 to 30 times. Ouch. Although I don’t pass much, if any, stool straining seems to relieve the burning somewhat, but, 15 minutes it is back. The burning is so bad I can’t sleep. Sitting or laying down is terrible. Only standing up and walking makes it bearable. I am currently under the care of a GI doc, however, she seems to be giving up on trying alternatives. She has been helpful prescribing Paxil, Effexor, and others. We also tried many of the antispasmodics,immodium, etc. To no affect. The only thing that helps is Asacol, which I am currenlty taking 12 per day. It doesn’t get rid of the symptons, but has helped tremendously. I did have a colonoscopy which only showed "non-specific" colitus. The biopsies came back negative. I can tell from the pictures the area just above the anus is inflammed, red, swollen, and "bumpy" not smooth like the other healthy areas of my colon. My concern is that I may be only masking the symptoms and not solving the problem. Has anyone experience similar symptoms to the ones described above? I am really worried about the burning being something more serious, i.e. cancer? Does this sound like Microscopic Colitus? Any comments or advice would be greatly appreciated. Thanks. P.S. I live in Plano, TX a suburb of Dallas. If anyone knows of a good GI doc in the area I would really appreciate the reference.

Response:

Dear Rock, I think that you are going to have to get a second opinion. I cannot say whether you have IBS or IBD, but it sure sounds as though you are having a bad time of it. With respect to IBS the docs say (see paper below) ‘detectable structural abnormalities’ are not seen in IBS – only the IBD-like symptoms are experienced ‘with low grade inflammation’. If it is IBS, then it has not been optimally treated and appears to be causing mucosal damage (do not worry this is reversible). If Asacol is working, but not enough it indicates, in my unqualified opinion, that you need to be on stronger anti-inflammatories. You should be in the hands of a specialist. Your GI comes over as not being really aware how this is affecting your quality of life in general. Has she considered any stronger anti-inflammatories? Has she referred you to a specialist for ultrasound to look at the general shape and size of the abdominal organs? Have she considered sending you for a small bowel follow through (SBFT) to eliminate any small bowel involvement? I do not pretend to understand the gut, but if the stool is normal and then behind is diarrhoea and mucus it would indicate to me as a layperson that there might also be inflammation further up the intestine when you have a flare. They can only go so far with the colonoscope and do not necessarily see everything. I think that there are trials going on with a camera (pill size) that you swallow and it takes pictures of your insides at intervals so they can see what is going on. Some people here have already had this done in the USA – perhaps, you can post a separate message asking about this. The inflammation and soreness around the rectum might be due solely to the frequency of the diarrhoea and might not be all of the problem. I do not want to get you worried here, but all the uncertainty needs to be eliminated. I recommend that you register yourself at www.medscape.com and do some research and print off some papers for her and have a long discussion about your treatment to date and how this can be optimised to improve your quality of life. At this stage the semantics of whether or not it is IBD or IBS is irrelevant – you need more agressive treatment to get the gut back in working order. I was ill for 10 years with Crohn’s Disease before the diagnosis and a lot of people here will tell you similar stories, for instance that strictures, IBD inflammation and everything has gone undetected until it was too late to save the part of the gut in question. A doctor actually prescribed me the pill for my symptoms! (- I binned the prescription).  A couple of years later I lost 4 feet of intestine that was damaged beyond repair and hence not responsive to the drugs. Don’t let them fob you off your gut is dysfunctional and needs treatment – so much pain and not being able to sit or stand is no quality of life. All the best, Vanny (Crohn’s Disease 20 years, ileostomy 10 years, GERD 7 years) http://www.medscape.com/viewarticle/457728_print Inflammatory Bowel Disease and Irritable Bowel Syndrome: Separate or Unified? Sylvie Bradesi, PhD, James A. McRoberts, Ph.D, Peter A. Anton, MD, Emeran A. Mayer, MD Curr Opin Gastroenterol 9(4):336-342, 2003.

Question:

First PLEASE DON’T POST IN CAPS IT LOOKS LIKE YOUR SCREAMING! Hope the new drug works for you, sounds like you’ve been through heck. lotta great people on this board can help you, good luck.

– Hide quoted text — Show quoted text – LATEST TREATMENT FOR CROHNS IS NATALIZUMAB WHICH IS NOT YET APPROVED BY FOOD AND DRUG ADMINISTRATION. THIS NATALIZUMAB IS MADE BY ELAN CORPORATIONS IN SAN FRANCISCO AND IRELAND. FOR FULL DETAILS READ JANUARY 2ND 2003 NEW ENGLAND JOURNAL OF MEDICINE SUBSCRIBED BY SOME DOCTORS. 5 YEARS AGO THEY REMOVED 18 INCHES OF MY SMALL INTESTINE AND 4 YEARS AGO I HAD A RUPTURED DEUODENAL ULCER WHICH TURNED INTO PERITONITIS AND HAD SURGERY AND WAS IN THE INTENSIVE CARE UNIT FOR 14 DAYS AND 5 DAYS IN THE GENERAL WARD. SINCE THIS SURGERY I HAVE LOTS OF LOOSE MOTION PROBLEMS AND FROM 136 POUNDS I CAME DOWN TO 100 POUNDS. ANY SUGGESTIONS TO INCREASE MY WEIGHT? Welcome Karen,  You’ll find this ng full of lots of info and lots of friends. Have you lost a lot of weight?  You sound like I did when I was dx’d in ‘92. Here’s some info. about me. I had been having a lot of problems for over 3 yrs.  Pain lots of D and throwing everything up and lost 40 lbs in 2 months.  When I changed Dr’s and was finally dx’d my dr. told me that I had a narrowing the size of a pencil lead and was swollen past that to around 3 inches.  He recommended surgery. I had the resection the next week.  It was the best choice for me at the time as my daughter was only 4 and I was going to school.  I have not regretted the surgery once.  I was able to eat just about anything I wanted again.  And I also got back some of the energy I needed to keep up with my daughter.  <G I also had another surgery almost 4 years later and started on meds after that.  I would have been on them after my first surgery if I would have had a ng like this available to get more info about crohns.  I didn’t want to take meds for a long time.  But, as I found out it was a good thing for me to do.  It has now been 7 years since my last surgery and I have been doing pretty good. Read as much about crohns that you can.  There are some really good books available at the ccfa website. Please keep us updated as to how you are doing and feel free to ask any questions that you like. Nothing is off limits.  :o) — Take Care, Sherry  :o) (To reply remove nospam from addie.) I have just been diagnosed with Chron’s.  I have no knowledge of this disease except that my bowel near the illium is swollen out to 4 inches.  I have been in extreme pain and can not eat anything except clear liquids during the day and for some reason I can eat at night very small amounts of bland food.  I have just started on the anti-inflammatory medicine but it has no effect.  I already exist in chronic pain because of failed back syndrome for my neck and am taking several medications for this for over 10 years. I also have a thyroid problem that is being diagnosed but not taken care of at this point. I am not sure where to go from here and what the next step will be.  My body is becoming less energenic and any movement at all sets off the pain level to about a 10.  I have been reading on the this site that exercise is good and eating cooked food is good.  But I have also been reading a lot about Prednisolione, is this the next step??  My grandmother had Lupis as well as Rheumitod arthritis and took this for over 20 years.  I saw what happened to her on this medication and do not really want to start this with all the side effects-especially since I already take nerve/pain medications with several side effects.  I am very scared at this point that the pain will never go away and that my life will get worse as my ability to eat has become near to nothing.  I have a 4 year old and a 6 year old and need to keep up with them.  Can anyone help me to understand this disease and if there are herbial remidies that I can try that could help increase my energy level and vitamin level and pain level??  I apologize for the miss spelling as my two little ones are jumping in my lap every two seconds and am trying to type this as fast as possible. Thanks for any information you can give me. — Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

LATEST TREATMENT FOR CROHNS IS NATALIZUMAB WHICH IS NOT YET APPROVED BY FOOD AND DRUG ADMINISTRATION. THIS NATALIZUMAB IS MADE BY ELAN CORPORATIONS IN SAN FRANCISCO AND IRELAND. FOR FULL DETAILS READ JANUARY 2ND 2003 NEW ENGLAND JOURNAL OF MEDICINE SUBSCRIBED BY SOME DOCTORS. 5 YEARS AGO THEY REMOVED 18 INCHES OF MY SMALL INTESTINE AND 4 YEARS AGO I HAD A RUPTURED DEUODENAL ULCER WHICH TURNED INTO PERITONITIS AND HAD SURGERY AND WAS IN THE INTENSIVE CARE UNIT FOR 14 DAYS AND 5 DAYS IN THE GENERAL WARD. SINCE THIS SURGERY I HAVE LOTS OF LOOSE MOTION PROBLEMS AND FROM 136 POUNDS I CAME DOWN TO 100 POUNDS. ANY SUGGESTIONS TO INCREASE MY WEIGHT? – Hide quoted text — Show quoted text – Welcome Karen,  You’ll find this ng full of lots of info and lots of friends. Have you lost a lot of weight?  You sound like I did when I was dx’d in ‘92. Here’s some info. about me. I had been having a lot of problems for over 3 yrs.  Pain lots of D and throwing everything up and lost 40 lbs in 2 months.  When I changed Dr’s and was finally dx’d my dr. told me that I had a narrowing the size of a pencil lead and was swollen past that to around 3 inches.  He recommended surgery. I had the resection the next week.  It was the best choice for me at the time as my daughter was only 4 and I was going to school.  I have not regretted the surgery once.  I was able to eat just about anything I wanted again.  And I also got back some of the energy I needed to keep up with my daughter.  <G I also had another surgery almost 4 years later and started on meds after that.  I would have been on them after my first surgery if I would have had a ng like this available to get more info about crohns.  I didn’t want to take meds for a long time.  But, as I found out it was a good thing for me to do.  It has now been 7 years since my last surgery and I have been doing pretty good. Read as much about crohns that you can.  There are some really good books available at the ccfa website. Please keep us updated as to how you are doing and feel free to ask any questions that you like. Nothing is off limits.  :o) — Take Care, Sherry  :o) (To reply remove nospam from addie.) I have just been diagnosed with Chron’s.  I have no knowledge of this disease except that my bowel near the illium is swollen out to 4 inches.  I have been in extreme pain and can not eat anything except clear liquids during the day and for some reason I can eat at night very small amounts of bland food.  I have just started on the anti-inflammatory medicine but it has no effect.  I already exist in chronic pain because of failed back syndrome for my neck and am taking several medications for this for over 10 years. I also have a thyroid problem that is being diagnosed but not taken care of at this point. I am not sure where to go from here and what the next step will be.  My body is becoming less energenic and any movement at all sets off the pain level to about a 10.  I have been reading on the this site that exercise is good and eating cooked food is good.  But I have also been reading a lot about Prednisolione, is this the next step??  My grandmother had Lupis as well as Rheumitod arthritis and took this for over 20 years.  I saw what happened to her on this medication and do not really want to start this with all the side effects-especially since I already take nerve/pain medications with several side effects.  I am very scared at this point that the pain will never go away and that my life will get worse as my ability to eat has become near to nothing.  I have a 4 year old and a 6 year old and need to keep up with them.  Can anyone help me to understand this disease and if there are herbial remidies that I can try that could help increase my energy level and vitamin level and pain level??  I apologize for the miss spelling as my two little ones are jumping in my lap every two seconds and am trying to type this as fast as possible. Thanks for any information you can give me. — Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

Welcome Karen,  You’ll find this ng full of lots of info and lots of friends. Have you lost a lot of weight?  You sound like I did when I was dx’d in ‘92. Here’s some info. about me. I had been having a lot of problems for over 3 yrs.  Pain lots of D and throwing everything up and lost 40 lbs in 2 months.  When I changed Dr’s and was finally dx’d my dr. told me that I had a narrowing the size of a pencil lead and was swollen past that to around 3 inches.  He recommended surgery. I had the resection the next week.  It was the best choice for me at the time as my daughter was only 4 and I was going to school.  I have not regretted the surgery once.  I was able to eat just about anything I wanted again.  And I also got back some of the energy I needed to keep up with my daughter.  <G I also had another surgery almost 4 years later and started on meds after that.  I would have been on them after my first surgery if I would have had a ng like this available to get more info about crohns.  I didn’t want to take meds for a long time.  But, as I found out it was a good thing for me to do.  It has now been 7 years since my last surgery and I have been doing pretty good. Read as much about crohns that you can.  There are some really good books available at the ccfa website. Please keep us updated as to how you are doing and feel free to ask any questions that you like. Nothing is off limits.  :o) — Take Care, Sherry  :o) (To reply remove nospam from addie.)

– Hide quoted text — Show quoted text – I have just been diagnosed with Chron’s.  I have no knowledge of this disease except that my bowel near the illium is swollen out to 4 inches.  I have been in extreme pain and can not eat anything except clear liquids during the day and for some reason I can eat at night very small amounts of bland food.  I have just started on the anti-inflammatory medicine but it has no effect.  I already exist in chronic pain because of failed back syndrome for my neck and am taking several medications for this for over 10 years. I also have a thyroid problem that is being diagnosed but not taken care of at this point. I am not sure where to go from here and what the next step will be.  My body is becoming less energenic and any movement at all sets off the pain level to about a 10.  I have been reading on the this site that exercise is good and eating cooked food is good.  But I have also been reading a lot about Prednisolione, is this the next step??  My grandmother had Lupis as well as Rheumitod arthritis and took this for over 20 years.  I saw what happened to her on this medication and do not really want to start this with all the side effects-especially since I already take nerve/pain medications with several side effects.  I am very scared at this point that the pain will never go away and that my life will get worse as my ability to eat has become near to nothing.  I have a 4 year old and a 6 year old and need to keep up with them.  Can anyone help me to understand this disease and if there are herbial remidies that I can try that could help increase my energy level and vitamin level and pain level??  I apologize for the miss spelling as my two little ones are jumping in my lap every two seconds and am trying to type this as fast as possible. Thanks for any information you can give me.

— Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

Hi, I also have been learning about this for the 1st time. I can only tell you from my experience now, about 3 weeks ago my husband had to have small bowel resection. He was suffering for about 1 year, test after test showed nothing until finally a a barium xray. It showed what was either inflamation or scar tissue the doctors were not sure. So he went on pentassa for 10-weeks, still suffering we deceided it was not inflamation, and went right to a specialist, the surgeon agreed and surgery was performed. About 6 inches was resected of the small bowel, he had also some bad tissue around his colon which they removed. So far 3 weeks later he is a new man. So far we have not seen a GI again to see what medicine they want to put him on. At one point prior to surgery they said he would need remicade treatments after surgery the Doctor said no. I guess thats good news for now, well see. All I can say to you is do not suffer anylonger if need be have the surgery. Good luck to you. God Bless.

Response:

I am glad he is doing better and tell him to keep it up.  With my emergence exploritoy surgery there was no reason for no diagnosis of IBD because I had all the tests at least three times and blood transfusion along with the major weight loss.  Every test showed the my colon was not emptying the stools and that barium wasn’t getting in to the area that finally needed to be resectioned.  Needless to say, I don’t see my old gi anymore.  He didn’t ever check on me when I went into surgery not to my surgeon the hospital or my family.  He just disappeared which is fine with me. I told everyone involved in my health that if he should contact them to let him know he was no longer my gi.  He never did though.  I wasn’t put on any prevented meds until I kept having inflamations.  Now  among others I am on Pentasa which helps a lot when I behave. )  UM MOM Susan

– Hide quoted text — Show quoted text – Hi, I also have been learning about this for the 1st time. I can only tell you from my experience now, about 3 weeks ago my husband had to have small bowel resection. He was suffering for about 1 year, test after test showed nothing until finally a a barium xray. It showed what was either inflamation or scar tissue the doctors were not sure. So he went on pentassa for 10-weeks, still suffering we deceided it was not inflamation, and went right to a specialist, the surgeon agreed and surgery was performed. About 6 inches was resected of the small bowel, he had also some bad tissue around his colon which they removed. So far 3 weeks later he is a new man. So far we have not seen a GI again to see what medicine they want to put him on. At one point prior to surgery they said he would need remicade treatments after surgery the Doctor said no. I guess thats good news for now, well see. All I can say to you is do not suffer anylonger if need be have the surgery. Good luck to you. God

Bless.

Response:

Hi Karen.  First everyone is different with just about everything from reaction to food to their meds.  Education of the disease is very powerful. First eat things that are easy to digest and keep a diary of everything from what you eat to how you react to it.  How much pain where and when, bathroom runs and so forth.   What kind of medications are you on?  I have had Crohn’s since 1999 but didn’t get diagnosed until emergency surgery in 2001. I was scared to death when I found out my diagnosis because I had never even heard of it.  Here are some links to get you started. http://www.ccfa.org/ http://www.gwpharm.com/cann_ther_cohn.html http://www.gwpharm.com/cann_ther_cohn.html This should get you started.  UM MOM Susan

– Hide quoted text — Show quoted text – I have just been diagnosed with Chron’s.  I have no knowledge of this disease except that my bowel near the illium is swollen out to 4 inches.  I have been in extreme pain and can not eat anything except clear liquids during the day and for some reason I can eat at night very small amounts of bland food.  I have just started on the anti-inflammatory medicine but it has no effect.  I already exist in chronic pain because of failed back syndrome for my neck and am taking several medications for this for over 10 years. I also have a thyroid problem that is being diagnosed but not taken care of at this point. I am not sure where to go from here and what the next step will be.  My body is becoming less energenic and any movement at all sets off the pain level to about a 10.  I have been reading on the this site that exercise is good and eating cooked food is good.  But I have also been reading a lot about Prednisolione, is this the next step??  My grandmother had Lupis as well as Rheumitod arthritis and took this for over 20 years.  I saw what happened to her on this medication and do not really want to start this with all the side effects-especially since I already take nerve/pain medications with several side effects.  I am very scared at this point that the pain will never go away and that my life will get worse as my ability to eat has become near to nothing.  I have a 4 year old and a 6 year old and need to keep up with them.  Can anyone help me to understand this disease and if there are herbial remidies that I can try that could help increase my energy level and vitamin level and pain level??  I apologize for the miss spelling as my two little ones are jumping in my lap every two seconds and am trying to type this as fast as possible. Thanks for any information you can give me.

Response:

hi karen…please go to the crohns/colitis foundation, CCF website.  they have a wealth of information and info for referals.  ccf.com i believe is the web address.  if you still have questions, as away…and welcome to the group.  we can be of help for you. jeffy

I believe it is CCFA.org     Steroids are helpful and necessary at times.  But most good doctors nowadays also try other things and only use them for extreme flares.  Other drugs are effective for most. Good luck to you. Hugs, Love, Peace and Good Tidings to you all –Staci–

Response:

Hello Karen, I have just been diagnosed with Chron’s.  I have no knowledge of this disease except that my bowel near the illium is swollen out to 4 inches.  

        Many people, doctors too do not know much about this disease.  You will probably do better to learn about it instead of just trusting your doctor. I think the www.ccfa.org is a good site to start with as Jeff suggested.  The last time I was there they did not have a search feature but you can use Google to search it by using the following URL:  http://www.google.com/advanced_search?site:www.ccfa.org&hl=en&lr=&saf… I have been in extreme pain and can not eat anything except clear liquids during the day and for some reason I can eat at night very small amounts of bland food.

        It sounds to me that you may have an obstruction but others in the newsgroup have more experience here than I.  Have you had the diagnostic X-Ray Upper GI with Small Bowel Follow through?  It takes up to a few hours and I’ve had it done a couple of times already.  I have just started on the anti-inflammatory medicine but it has no effect.  

        Which anti-inflammatory medicine? I already exist in chronic pain because of failed back syndrome for my neck and am taking several medications for this for over 10 years.

        If you have Crohn’s disease then you should avoid Aspirin and other NSAIDS like ibuprofen (e.g. Advil).  Acetaminophen (e.g. Tylenol) is considered safe.  So if you have been using something like Motrin for minor pain relief you should find something else; but as usual, please discuss this with your doctor. I also have a thyroid problem that is being diagnosed but not taken care of at this point. I am not sure where to go from here and what the next step will be.  

        Well,  this is difficult because either you or someone you trust has to find the time to learn enough about Crohn’s (CD) to make decisions about how you are being treated.  Have you seen a gastroenterologist? These are the specialists in the US who typically handle CD.  What options has your doctor discussed with you?         In the US, mainstream medicine tries to treat CD via medication and they are several options, some used in combination.  If medication is not working or for other reasons, surgery may be done.  Some people have said that they have found relief via other things such as vitamin supplements, diet or alternative medicine. My body is becoming less energenic and any movement at all sets off the pain level to about a 10.  I have been reading on the this site that exercise is good and eating cooked food is good.  

        CD has a lot of individual variation.  People have widely varying symptoms and may or may not respond to treatment that have helped others.  In general, exercise is good for people but if you can’t do not punish yourself.         Diet seems to have the greatest variation among the people who post in the newsgroup.   You might try a minimal residue diet (your doctor may have a pamphlet describing this) but you probably should start a food diary to track what you eat and what your symptoms are.  Using that you can find out what you can eat safely.         Unfortunately, you may be trying to hit a moving target.  I had found a very restricted diet that seemed to work for me but then it lost effectiveness and I kept getting sicker.  This was just before my doctor suggested surgery. But I have also been reading a lot about Prednisolione, is this the next step??  

        It can be but not always.  Your doctor can make a better decision than we can since s/he should have more information about your health.  Steroids are powerful medications that may have severe side effects but because they are powerful. they often get used to bring the disease under control. My grandmother had Lupis as well as Rheumitod arthritis and took this for over 20 years.  I saw what happened to her on this medication and do not really want to start this with all the side effects-especially since I already take nerve/pain medications with several side

effects.         Different people react differently and you may not need to use steroids for that long.  I was on them for about 6 months and then spent 3 months tapering off of them. I am very scared at this point that the pain will never go away and that my life will get worse as my ability to eat has become near to nothing.  I have a 4 year old and a 6 year old and need to keep up with them.  

        I am sorry you are so distressed and I feel worse that I can’t offer unqualified assurance  Some people respond well to treatment and with some life style changes can lead normal lives.  From what I’ve seen and read your best bet is to learn how you respond to the disease: what medications work for you, what supplements help, what foods you can safely eat, etc… Can anyone help me to understand this disease and if there are herbial remidies that I can try that could help increase my energy level and vitamin level and pain level??  I apologize for the miss spelling as my two little ones are jumping in my lap every two seconds and am trying to type this as fast as possible. Thanks for any information you can give me.

        Do not worry about misspellings or the like.  This is a support group.  You can also post a rant if things have been bad.         Between all of us here we have lot of experience with IBD including mainstream and alternatives. You’ll rarely find a consensus as Crohn’s Disease symptoms and responses to treatments varies widely.  I’m more a mainstream person myself.         The IBD FAQ is a useful document as it has a lot of information and pointers to other places.  It can be found at http://qurlyjoe.bu.edu/cducibs/ibdfaq.html         I have CD, diagnosed July 2001 with probably onset in the mid 1970s. My seems to be mainly in the terminal ileum and the ascending colon. I’ve had one surgery and have used various medications.  I’m on my second gastroenterologist as my first was not handling my case well.         My symptom set seems difference from yours, my top three problems are fatigue, joint pain and diarrhea.  My joint pain is under control (though not gone) since I got a Remicade treatment back in July.  My diarrhea is under control (though not gone) since I started using Colestid.  My fatigue?  Well, that got worse with treatment but I seem to be an unusual case when it comes to fatigue.         I was able to reduce but not remove my fatigue via diet.  Right now my base diet is a low calorie liquid diet at about 100 calories a day drinking Equate Plus which is like Ensure Plus.         Take care, — Luke The early bird may get the worm, but the second mouse gets the cheese

Response:

hi karen…please go to the crohns/colitis foundation, CCF website.  they have a wealth of information and info for referals.  ccf.com i believe is the web address.  if you still have questions, as away…and welcome to the group.  we can be of help for you. jeffy

– Hide quoted text — Show quoted text – I have just been diagnosed with Chron’s.  I have no knowledge of this disease except that my bowel near the illium is swollen out to 4 inches.  I have been in extreme pain and can not eat anything except clear liquids during the day and for some reason I can eat at night very small amounts of bland food.  I have just started on the anti-inflammatory medicine but it has no effect.  I already exist in chronic pain because of failed back syndrome for my neck and am taking several medications for this for over 10 years. I also have a thyroid problem that is being diagnosed but not taken care of at this point. I am not sure where to go from here and what the next step will be.  My body is becoming less energenic and any movement at all sets off the pain level to about a 10.  I have been reading on the this site that exercise is good and eating cooked food is good.  But I have also been reading a lot about Prednisolione, is this the next step??  My grandmother had Lupis as well as Rheumitod arthritis and took this for over 20 years.  I saw what happened to her on this medication and do not really want to start this with all the side effects-especially since I already take nerve/pain medications with several side effects.  I am very scared at this point that the pain will never go away and that my life will get worse as my ability to eat has become near to nothing.  I have a 4 year old and a 6 year old and need to keep up with them.  Can anyone help me to understand this disease and if there are herbial remidies that I can try that could help increase my energy level and vitamin level and pain level??  I apologize for the miss spelling as my two little ones are jumping in my lap every two seconds and am trying to type this as fast as possible. Thanks for any information you can give me.

Response:

Karen I haven’t posted this group of links for a while. This seems like a good time to do it. I would recommend starting with the CCFA site, as I think it has more information on Crohn’s Disease and Ulcerative Colitis than some of the others. Also one of the best books I have found about inflammatory bowel disease(IBD) is ‘The New People: Not Patients.’ It can be bought from the bookstore on the CCFA site. —– Welcome to all the new people who just found this group. Here are a group of very helpful web sites that have information about Crohn’s Disease(CD), and Ulcerative Colitis(UC), and Microscopic Colitis(MC). I post this list from time to time on the newsgroup so that new people can read and know more about their disease. These are all excellent sources of information, and excellent starting points in your search for answers. (Most have additional ‘Links’.) Crohn’s & Colitis Foundation of America (CCFA) http://www.ccfa.org/ (click on ‘Medical Central’ to get to the ‘Library’ which has information on ‘Medications’ as well as many other topics.) (click on ‘Chapters & Events’ to locate a support group near you – if you live in the United States.) (I know there are also support groups in Canada – from the CCFC site. And I believe there are also support groups that can be found from the UK site and the Australian site.) (click on ‘Links’ to find one of the largest collection of links to medical pages, as well as Crohn’s & Colitis pages.) Crohn’s and Colitis Foundation of Canada (CCFC) (in English & French) http://www.ccfc.ca/ National Association for Colitis and Crohn’s Disease (NACC) http://www.nacc.org.uk/ (in the United Kingdom.) Australian Crohn’s and Colitis Association (ACCA) http://www.acca.net.au/ (There are separate sites for ‘Queensland’ and ‘South Australia’ and for a Support Group in New Zealand. These are found on the ‘Links’ page.) Links for many other National Support Organizations for Crohn’s and Colitis can be found on the ‘Links’ page of the CCFA site. Where some of these do not have a web site, addresses and telephone numbers, along with e-mail addresses (when available) are also listed there. ‘Living With Ulcerative Colitis’ http://www.asacol.com/ http://www.living-better.com/index.html  (The US site.) http://www.canada.living-better.com/index.html   (The Canadian site.) There is a lot of good information here. For me the information about what to know before going to your doctor was especially useful. The US site has been around longer, and therefore has more of the articles. (These sites are sponsered by Proctor & Gamble the makers of Asacol.) There is lots of good info here. Personally I want to say "Thank you Proctor & Gamble." There are several lists of ‘Frequently Asked Questions’ (FAQ) about Crohn’s and Colitis. They are usually posted on this newsgroup every couple weeks. These are several links to them. Bill Robertson’s Inflammatory Bowel Disease Pages. http://qurlyjoe.bu.edu/cduchome.html The page with FAQ’s here also lists an FAQ for ‘Information Resources’ for IBD (Inflammatory Bowel Disease), and FAQ for ‘Collagenous Colitis’, and an FAQ for IBS (Irritable Bowel Syndrome). There are a multitude of links from this home page as well. ‘Collagenous Colitis’ (also called ‘Microscopic Colitis’ or ‘Lymphocytic Colitis’) is also one of the forms of IBD (Inflammatory Bowel Disease) along with the more commonly known ‘Crohn’s Disease’ and ‘Ulcerative Colitis.’ It was only recently discovered, and gets its name from the fact that the inflammation is not visible, but can only be detected under a microscope. Here are two web pages that have been built by teens with ulcerative colitis or crohn’s disease. http://pages.prodigy.net/mattgreen/ http://creativegrrrl.homestead.com/ And for some balance, here is a message board about Crohn’s and Colitis. Perhaps you might want to stop by and say Hi there. http://members4.boardhost.com/nikkigosling/ And here are a few pages from people on this newsgroup. Steve Hylton’s alt.support.crohns-colitis on the WWW http://ascc.healingwell.com/ Darren’s Homepage. http://www2.netdoor.com/~darren/ Steve Hudson’s IBDUK Page. http://www.ibduk.com/ Shaz’s Ileostomy Page. http://www.geocities.com/HotSprings/Spa/8089/ Jeff Goldband’s Crohn’s, Colitis, and Ostomy Meeting Place. http://www.ccomp.org/ These are just a few of the great web pages by people who stop by this newsgroup. Look at the bottom of many of the messages to find more. And just on the chance that you might get an e-mail from someone called Gail after you join this group, you might want to check out this link. Gail has a rather strange theory about the cause of crohn’s disease. And although she believes it, I don’t know of anyone else who does. http://ascc.healingwell.com/info/gailfaq.htm Howard in Alaska UC since 1995 – Hide quoted text — Show quoted text – I have just been diagnosed with Chron’s.  I have no knowledge of this disease except that my bowel near the illium is swollen out to 4 inches.  I have been in extreme pain and can not eat anything except clear liquids during the day and for some reason I can eat at night very small amounts of bland food.  I have just started on the anti-inflammatory medicine but it has no effect.  I already exist in chronic pain because of failed back syndrome for my neck and am taking several medications for this for over 10 years. I also have a thyroid problem that is being diagnosed but not taken care of at this point. I am not sure where to go from here and what the next step will be.  My body is becoming less energenic and any movement at all sets off the pain level to about a 10.  I have been reading on the this site that exercise is good and eating cooked food is good.  But I have also been reading a lot about Prednisolione, is this the next step??  My grandmother had Lupis as well as Rheumitod arthritis and took this for over 20 years.  I saw what happened to her on this medication and do not really want to start this with all the side effects-especially since I already take nerve/pain medications with several side effects.  I am very scared at this point that the pain will never go away and that my life will get worse as my ability to eat has become near to nothing.  I have a 4 year old and a 6 year old and need to keep up with them.  Can anyone help me to understand this disease and if there are herbial remidies that I can try that could help increase my energy level and vitamin level and pain level??  I apologize for the miss spelling as my two little ones are jumping in my lap every two seconds and am trying to type this as fast as possible. Thanks for any information you can give me.

Response:

I have just been diagnosed with Chron’s.  I have no knowledge of this disease except that my bowel near the illium is swollen out to 4 inches.  I have been in extreme pain and can not eat anything except clear liquids during the day and for some reason I can eat at night very small amounts of bland food.  I have just started on the anti-inflammatory medicine but it has no effect.  I already exist in chronic pain because of failed back syndrome for my neck and am taking several medications for this for over 10 years. I also have a thyroid problem that is being diagnosed but not taken care of at this point. I am not sure where to go from here and what the next step will be.  My body is becoming less energenic and any movement at all sets off the pain level to about a 10.  I have been reading on the this site that exercise is good and eating cooked food is good.  But I have also been reading a lot about Prednisolione, is this the next step??  My grandmother had Lupis as well as Rheumitod arthritis and took this for over 20 years.  I saw what happened to her on this medication and do not really want to start this with all the side effects-especially since I already take nerve/pain medications with several side effects.  I am very scared at this point that the pain will never go away and that my life will get worse as my ability to eat has become near to nothing.  I have a 4 year old and a 6 year old and need to keep up with them.  Can anyone help me to understand this disease and if there are herbial remidies that I can try that could help increase my energy level and vitamin level and pain level??  I apologize for the miss spelling as my two little ones are jumping in my lap every two seconds and am trying to type this as fast as possible. Thanks for any information you can give me.

Response:

Question:

Hi  My daughter was just told she has crohns diesase and was in the hospital had a bunch of tests done she is 17 they have her on ascole but she very tired and has no engery she never told us she had bloody stools or pain until she coiuld’t take it any longer I not yet too sure about her diet love to talk to you Joann

Response:

Joann- I have CD and bloody stools for a few weeks after Thanksgiving and I can attest that I was extremely exhausted, dizzy, and weak for quite some time.  I am on asacol (as a maintenance med)… also prednisone, imuran and have had 3 remicade infusions trying to knock this flare out of me.  As far as diet goes, it is very individual, but some good rules of thumb may be for her to eat 6 small meals (rather than 3 large meals).  When I am flaring, I try to stay away from anything with seeds, skins, nuts, raw fruits and veggies, and red meats. I do much better with pasta (without tomato sauce), rice, potatoes (white or sweet), fish, chicken (no skin).  Very mild without alot of spices.  I also steer clear from caffeine.  Just my personal experience.  If she’s still in alot of pain, she may want to try going to a clear liquid diet for a few days (broths, jello, soda) and then if she tolerates that well, maybe she can go to a full liquid diet (such as soups, chowders, puddings and ice cream (if she’s not lactose intolerant).  Good luck! Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

Response:

susan Here are a number of links for info on UC & CD. Here are three (make that two, can’t connect with the third one) web pages that have been built by teens with ulcerative colitis or crohn’s disease. http://pages.prodigy.net/mattgreen/ http://creativegrrrl.homestead.com/ Here are a group of very helpful web sites that have information about Crohn’s Disease(CD), and Ulcerative Colitis(UC), and Microscopic Colitis(MC). I post this list from time to time on the newsgroup so that new people can read and know more about their disease. The best book with factual information about IBD is, "The New People: Not Patients" by Penny Steiner-Grossman, Peter A. Banks and Daniel H. Present. (It is available from the bookstore on the CCFA site and from other places.) It is written in language the layman can understand. These are all excellent sources of information, and excellent starting points in your search for answers. (Most have additional ‘Links’.) Crohn’s & Colitis Foundation of America (CCFA) http://www.ccfa.org/ (click on ‘Medical Central’ to get to the ‘Library’ which has information on ‘Medications’ as well as many other topics.) (click on ‘Chapters & Events’ to locate a support group near you – if you live in the United States.) (I know there are also support groups in Canada – from the CCFC site. And I believe there are also support groups that can be found from the UK site and the Australian site.) (click on ‘Links’ to find one of the largest collection of links to medical pages, as well as Crohn’s & Colitis pages.) Crohn’s and Colitis Foundation of Canada (CCFC) (in English & French) http://www.ccfc.ca/ National Association for Colitis and Crohn’s Disease (NACC) http://www.nacc.org.uk/ (in the United Kingdom.) Australian Crohn’s and Colitis Association (ACCA) http://www.acca.net.au/ (There are separate sites for ‘Queensland’ and ‘South Australia’ and for a Support Group in New Zealand. These are found on the ‘Links’ page.) Links for many other National Support Organizations for Crohn’s and Colitis can be found on the ‘Links’ page of the CCFA site. Where some of these do not have a web site, addresses and telephone numbers, along with e-mail addresses (when available) are also listed there. ‘Living With Ulcerative Colitis’ http://www.asacol.com/ http://www.living-better.com/index.html  (The US site.) http://www.canada.living-better.com/index.html   (The Canadian site.) There is a lot of good information here. For me the information about what to know before going to your doctor was especially useful. The US site has been around longer, and therefore has more of the articles. (These sites are sponsered by Proctor & Gamble the makers of Asacol.) There is lots of good info here. Personally I want to say "Thank you Proctor & Gamble." There are several lists of ‘Frequently Asked Questions’ (FAQ) about Crohn’s and Colitis. They are usually posted on this newsgroup every couple weeks. These are several links to them. Bill Robertson’s Inflammatory Bowel Disease Pages. http://qurlyjoe.bu.edu/cduchome.html The page with FAQ’s here also lists an FAQ for ‘Information Resources’ for IBD (Inflammatory Bowel Disease), and FAQ for ‘Collagenous Colitis’, and an FAQ for IBS (Irritable Bowel Syndrome). There are a multitude of links from this home page as well. ‘Collagenous Colitis’ (also called ‘Microscopic Colitis’ or ‘Lymphocytic Colitis’) is also one of the forms of IBD (Inflammatory Bowel Disease) along with the more commonly known ‘Crohn’s Disease’ and ‘Ulcerative Colitis.’ It was only recently discovered, and gets its name from the fact that the inflammation is not visible, but can only be detected under a microscope. Here are three (make that two, can’t connect with the third one) web pages that have been built by teens with ulcerative colitis or crohn’s disease. http://pages.prodigy.net/mattgreen/ http://creativegrrrl.homestead.com/ And here are a few pages from people on this newsgroup. Steve Hylton’s alt.support.crohns-colitis on the WWW http://ascc.healingwell.com/ Darren’s Homepage. http://www2.netdoor.com/~darren/ Steve Hudson’s IBDUK Page. http://www.ibduk.com/ Shaz’s Ileostomy Page. http://www.geocities.com/HotSprings/Spa/8089/ Jeff Goldband’s Crohn’s, Colitis, and Ostomy Meeting Place. http://www.ccomp.org/ These are just a few of the great web pages by people who stop by this newsgroup. Look at the bottom of many of the messages to find more. And just on the chance that you might get an e-mail from someone called Gail after you join this group, you might want to check out this link. Gail has a rather strange theory about the cause of crohn’s disease. And although she believes it, I don’t know of anyone else who does. http://ascc.healingwell.com/info/gailfaq.htm Howard in Alaska UC since 1995 – Hide quoted text — Show quoted text – My 15 year old daughter has recently experienced bloody diarrhea which necessitated blood work, stool cultures and colonoscopy.  Symptoms have only been present for roughly 2 months but she’s already anemic and has lost a few pounds, not much.  UC is in the family so that’s where we think we’re headed.  Steroid enemas were not effective so she’s on prednisone 40 mg daily and things are beginning to look up; less diarrhea and less blood and increased appetite.  She’s scheduled for a barium swallow and follow up with GI in January. I’m anxious to find out about teenagers with uc who she could communicate with and whose parents I could.  Any suggestions?  I know the hospital will probably have some info but I thought that maybe there’s a site out there??? Meanwhile, I’m checking out all the sites I can to get as much info as possible.  You seem like a friendly bunch.  I’ll check in here again.  Thanks.

Response:

Thanks so much for all your suggestions.  Keep any more ideas coming.  I’m going to keep checking here as you guys seem to be a wealth of knowledge and understanding.  Thanks again.

– Hide quoted text — Show quoted text – On this message board, there is a thread for kids and teenagers: http://qurlyjoe.bu.edu/webx I hope this helps Noella My 15 year old daughter has recently experienced bloody diarrhea which necessitated blood work, stool cultures and colonoscopy.  Symptoms have only been present for roughly 2 months but she’s already anemic and has lost a few pounds, not much.  UC is in the family so that’s where we think we’re headed.  Steroid enemas were not effective so she’s on prednisone 40 mg daily and things are beginning to look up; less diarrhea and less blood and increased appetite.  She’s scheduled for a barium swallow and follow up with GI in January. I’m anxious to find out about teenagers with uc who she could communicate with and whose parents I could.  Any suggestions?  I know the hospital will probably have some info but I thought that maybe there’s a site out there??? Meanwhile, I’m checking out all the sites I can to get as much info as possible.  You seem like a friendly bunch.  I’ll check in here again.  Thanks.

Response:

I’m so sorry your daughter is suffering with this disease.  Where are you? There was an insightful documentary on Discovery Health Channel that dealt with children (young and teen-agers) with IBD and their families.  I have taped it and want to share it among the families with children.  I’ve asked Beth if she wants to see it first; if you missed it and would also like to see it just e-mail me.  God bless you.  Ceresse

– Hide quoted text — Show quoted text – My 15 year old daughter has recently experienced bloody diarrhea which necessitated blood work, stool cultures and colonoscopy.  Symptoms have only been present for roughly 2 months but she’s already anemic and has lost a few pounds, not much.  UC is in the family so that’s where we think we’re headed.  Steroid enemas were not effective so she’s on prednisone 40 mg daily and things are beginning to look up; less diarrhea and less blood and increased appetite.  She’s scheduled for a barium swallow and follow up with GI in January. I’m anxious to find out about teenagers with uc who she could communicate with and whose parents I could.  Any suggestions?  I know the hospital will probably have some info but I thought that maybe there’s a site out there??? Meanwhile, I’m checking out all the sites I can to get as much info as possible.  You seem like a friendly bunch.  I’ll check in here again.  Thanks.

Response:

HealingWell.com – try the community site for UC there seems to be a lot of teenagers / younger people on that site. Best wishes, I hope your daughter feels better soon.

Response:

Here is a site for parents and kids, good luck with your daughter, just click on the wording to go to the various forums.  I don’t go there much, it is too sad.   Mike F http://www.dragonpack.com/forums/

Response:

" I’m anxious to find out about teenagers with uc who she could communicate with

"Teens With Crohn’s" site; probably has plenty of kids with UC on it too: http://pages.prodigy.net/mattgreen/

Response:

On this message board, there is a thread for kids and teenagers: http://qurlyjoe.bu.edu/webx I hope this helps Noella – Hide quoted text — Show quoted text – My 15 year old daughter has recently experienced bloody diarrhea which necessitated blood work, stool cultures and colonoscopy.  Symptoms have only been present for roughly 2 months but she’s already anemic and has lost a few pounds, not much.  UC is in the family so that’s where we think we’re headed.  Steroid enemas were not effective so she’s on prednisone 40 mg daily and things are beginning to look up; less diarrhea and less blood and increased appetite.  She’s scheduled for a barium swallow and follow up with GI in January. I’m anxious to find out about teenagers with uc who she could communicate with and whose parents I could.  Any suggestions?  I know the hospital will probably have some info but I thought that maybe there’s a site out there??? Meanwhile, I’m checking out all the sites I can to get as much info as possible.  You seem like a friendly bunch.  I’ll check in here again.  Thanks.

Response:

There are several sites for children and teenagers. I have an appointment this am otherwise I would find them and send you their addresses. THis afternoon I hope to be able to get to it. Good luck.

– Hide quoted text — Show quoted text – Hiya Susan, If you ever need to talk you’ve come to the right place!!! My 5 yr old daughter, Arianne, was diagnosed with UC in Feb 2001, and I had no idea what IBD was then. A friend found this group for me a few months ago and  it really helps to know that you’re not alone!! Unfortunately there’s not many children on here, I know of  another 7 yr old girl. But as parents we really need to have a shoulder to lean on, and this is the right place!!! If you need to contact me please feel free, I know how stressful it can be. We very neally lost Arianne in August, and the group kept me going through that difficult time!! Arianne has been on 25 mgs prednisolone daily for 10 months.Every time we reduce the dose she has another flare-up.She is now steroid dependant.She also has sulphasalazine and Azathioprine .Nothing seems to help apart from the steroids. The Docs are going to remove her large colon in the near future, which I was not too happy about, until I realized that she couldn’t have a normal childhood without it. It will be a permanant stoma , Docs have already said it will not be reversible. So long as she’s not in any pain that’s fine by me. Any way, keep in touch, it’s nice to know we’re not alone , and someone, somewhere cares for you!! Love from Beth & Arianne Exell (South Wales).xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx My 15 year old daughter has recently experienced bloody diarrhea which necessitated blood work, stool cultures and colonoscopy.  Symptoms have only been present for roughly 2 months but she’s already anemic and has lost a few pounds, not much.  UC is in the family so that’s where we think we’re headed.  Steroid enemas were not effective so she’s on prednisone 40 mg daily and things are beginning to look up; less diarrhea and less blood and increased appetite.  She’s scheduled for a barium swallow and follow up with GI in January. I’m anxious to find out about teenagers with uc who she could communicate with and whose parents I could.  Any suggestions?  I know the hospital will probably have some info but I thought that maybe there’s a site out there??? Meanwhile, I’m checking out all the sites I can to get as much info as possible.  You seem like a friendly bunch.  I’ll check in here again.  Thanks.

Response:

My 15 year old daughter has recently experienced bloody diarrhea which necessitated blood work, stool cultures and colonoscopy.  Symptoms have only been present for roughly 2 months but she’s already anemic and has lost a few pounds, not much.  UC is in the family so that’s where we think we’re headed.  Steroid enemas were not effective so she’s on prednisone 40 mg daily and things are beginning to look up; less diarrhea and less blood and increased appetite.  She’s scheduled for a barium swallow and follow up with GI in January. I’m anxious to find out about teenagers with uc who she could communicate with and whose parents I could.  Any suggestions?  I know the hospital will probably have some info but I thought that maybe there’s a site out there??? Meanwhile, I’m checking out all the sites I can to get as much info as possible.  You seem like a friendly bunch.  I’ll check in here again.  Thanks.

Response:

Hiya Susan, If you ever need to talk you’ve come to the right place!!! My 5 yr old daughter, Arianne, was diagnosed with UC in Feb 2001, and I had no idea what IBD was then. A friend found this group for me a few months ago and  it really helps to know that you’re not alone!! Unfortunately there’s not many children on here, I know of  another 7 yr old girl. But as parents we really need to have a shoulder to lean on, and this is the right place!!! If you need to contact me please feel free, I know how stressful it can be. We very neally lost Arianne in August, and the group kept me going through that difficult time!! Arianne has been on 25 mgs prednisolone daily for 10 months.Every time we reduce the dose she has another flare-up.She is now steroid dependant.She also has sulphasalazine and Azathioprine .Nothing seems to help apart from the steroids. The Docs are going to remove her large colon in the near future, which I was not too happy about, until I realized that she couldn’t have a normal childhood without it. It will be a permanant stoma , Docs have already said it will not be reversible. So long as she’s not in any pain that’s fine by me. Any way, keep in touch, it’s nice to know we’re not alone , and someone, somewhere cares for you!! Love from Beth & Arianne Exell (South Wales).xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

– Hide quoted text — Show quoted text – My 15 year old daughter has recently experienced bloody diarrhea which necessitated blood work, stool cultures and colonoscopy.  Symptoms have only been present for roughly 2 months but she’s already anemic and has lost a few pounds, not much.  UC is in the family so that’s where we think we’re headed.  Steroid enemas were not effective so she’s on prednisone 40 mg daily and things are beginning to look up; less diarrhea and less blood and increased appetite.  She’s scheduled for a barium swallow and follow up with GI in January. I’m anxious to find out about teenagers with uc who she could communicate with and whose parents I could.  Any suggestions?  I know the hospital will probably have some info but I thought that maybe there’s a site out there??? Meanwhile, I’m checking out all the sites I can to get as much info as possible.  You seem like a friendly bunch.  I’ll check in here again.  Thanks.

Response:

Question:

Clare Welcome to the newsgroup. I have had UC since 1995. Here are a number of links to sites with more info on UC. I post this list from time to time on the newsgroup, so you may have seen it already. These are all excellent sources of information, and excellent starting points in your search for answers. (Most of them have many additional ‘Links’.) Crohn’s & Colitis Foundation of America (CCFA) http://www.ccfa.org/ (click on ‘Medical Central’ to get to the ‘Library’ which has information on ‘Medications’ as well as many other topics.) (click on ‘Chapters & Events’ to locate a support group near you – if you live in the United States.) (I know there are also support groups in Canada – from the CCFC site. And I believe there are also support groups that can be found from the UK site and the Australian site.) (click on ‘Links’ to find one of the largest collection of links to medical pages, as well as Crohn’s & Colitis pages.) Crohn’s and Colitis Foundation of Canada (CCFC) (in English & French) http://www.ccfc.ca/ (click on the ‘Index’ {was near the upper left side of the page, after you chose english or french} to get an overview of the information available on this site.) National Association for Colitis and Crohn’s Disease (NACC) http://www.nacc.org.uk/ (This is the National Association for Colitis and Crohn’s Disease in the United Kingdom.) Australian Crohn’s and Colitis Association (ACCA) http://www.acca.net.au/ (There are separate sites for ‘Queensland’ and ‘South Australia’ and for a Support Group in New Zealand. These are found on the ‘Links’ page.) Links for many other National Support Organizations for Crohn’s and Colitis can be found on the ‘Links’ page of the CCFA site. Where some of these do not have a web site, addresses and telephone numbers, along with e-mail addresses (when available) are also listed there. ‘Living With Ulcerative Colitis’ http://www.ulcerativecolitis.com/ http://www.living-better.com/index.html  (The US site.) http://www.canada.living-better.com/index.html   (The Canadian site.) I am also going to mention this program. I managed to find them and joined this information program before I got on the internet. I found this program to be very helpful. This free information program is sponsored by ‘Proctor & Gamble’ and by ‘Proctor & Gamble Canada.’ There is an initial Information Packet, followed by a quarterly newsletter. The information on the web pages is useful even if you do not qualify for the information program. Some of the articles from the newsletter are archived on the US site. Here are the restrictions for the ‘Living With Ulcerative Colitis’ information program. You must live in the United States or Canada, and have Ulcerative Colitis. If you live in Canada, you must be taking Asacol to qualify for it. (At least this is my understanding of the restrictions.) There are several lists of ‘Frequently Asked Questions’ (FAQ) about Crohn’s and Colitis. They are usually posted on this newsgroup every couple weeks. These are several links to them. Bill Robertson’s Inflammatory Bowel Disease Pages. http://qurlyjoe.bu.edu/cduchome.html The page with FAQ’s here also lists an FAQ for ‘Information Resources’ for IBD (Inflammatory Bowel Disease), and FAQ for ‘Collagenous Colitis’, and an FAQ for IBS (Irritable Bowel Syndrome). There are a multitude of links from this home page as well. ‘Collagenous Colitis’ (also called ‘Microscopic Colitis’ or ‘Lymphocytic Colitis’) is also one of the forms of IBD (Inflammatory Bowel Disease) along with the more commonly known ‘Crohn’s Disease’ and ‘Ulcerative Colitis.’ It was only recently discovered, and gets its name from the fact that the inflammation is not visible, but can only be detected under a microscope. And here are a few pages from people on this newsgroup. Steve Hylton’s alt.support.crohns-colitis on the WWW http://www.geocities.com/HotSprings/Falls/3298/ Darren’s Homepage. http://www2.netdoor.com/~darren/ Maryjo’s Homepage. http://community-1.webtv.net/MaryjoL/MYPAGE/ Steve Hudson’s IBDUK Page. http://members.tripod.com/shudson8472/ Marla’s Pain Forum Home Page. http://members.delphi.com/mogo69/index.html Shaz’s Ileostomy Page. http://www.geocities.com/HotSprings/Spa/8089/ Jeff Goldband’s Crohn’s, Colitis, and Ostomy Meeting Place. http://www.ccomp.org/ These are just a few of the great web pages by people who stop by this newsgroup. Look at the bottom of many of the messages to find more. Howard in Alaska – Hide quoted text — Show quoted text – Hello All, This is the first time I have sent a message . I was diagnosed with U.C about 18 months ago. Reading all your messages and queries has been both very informative and interesting for both myself and my husband. I have just had my first flare up since stating on my medication and am going in hospital for my 2nd colonoscopy on Monday. Through reading your letters I now realize that my flare up could have been caused through ibuprofen prescribed by my G.P for a shoulder strain. I would like to learn more about U.C and any info would be most appreciated. Please e-mail me or post to this message. Thankyou, Clare. Stockport, England.

Response:

Hello and welcome! If your GP is prescribing ibuprofen for you knowing you have UC I’d start looking for a GP who is more knowledgeable about your condition. Good luck!  mgbio CD Class of ‘99 – Hide quoted text — Show quoted text – Hello All, This is the first time I have sent a message . I was diagnosed with U.C about 18 months ago. Reading all your messages and queries has been both very informative and interesting for both myself and my husband. I have just had my first flare up since stating on my medication and am going in hospital for my 2nd colonoscopy on Monday. Through reading your letters I now realize that my flare up could have been caused through ibuprofen prescribed by my G.P for a shoulder strain. I would like to learn more about U.C and any info would be most appreciated. Please e-mail me or post to this message. Thankyou, Clare. Stockport, England.

Response:

Hi – I had UC and an ileostomy – see m page, there are a couple of interseting links! Candy, Southampton England http://freespace.virgin.net/candy.moran

Response:

Hello All, This is the first time I have sent a message . I was diagnosed with U.C about 18 months ago. Reading all your messages and queries has been both very informative and interesting for both myself and my husband. I have just had my first flare up since stating on my medication and am going in hospital for my 2nd colonoscopy on Monday. Through reading your letters I now realize that my flare up could have been caused through ibuprofen prescribed by my G.P for a shoulder strain. I would like to learn more about U.C and any info would be most appreciated. Please e-mail me or post to this message. Thankyou, Clare. Stockport, England.

Response:

Question:

Hi Lee Welcome to the group from a fellow aussie. You can find out all sorts of information and get lots of support here. We also have a chat room thats open 24/7 with 3 regularly scheduled chats a week Tuesday, Thursday and Friday afternoons at 1:00pm Melboune time Click on the link below http://talkcity.com/communities/chat/local.htmpl?room=Crohns/colitisS… or if you have an IRC client Server chat.talkcity.com    Port 6667 Channel #Crohns/colitisSupport. 02:00 am – Greenwich Mean Time. 10:30 pm – Newfoundland Time. 10:00 pm – Atlantic Time. 09:00 pm – Eastern Standard Time. 08:00 pm – Central. 07:00 pm – Mountain. 06:00 pm – Pacific. 05:00 pm – Alaska-Yukon. 04:00 pm – Hawaiian. 01:00 pm – Australian Eastern Standard Time. (Because this is on the other side of the International Date Line, it is on the following day: Tuesday, Thursday and Friday) David1701 ICQ 61635176 CD class of 84 (at least) — Shared joy is doubled, Shared pain is halved – Spider Robinson

Response:

Windows In Safe Mode – isn’t that an oxymoron? I had a second resection of about 2 cm (or so I was told – I slept thru the whole thing) was sore for a few days but was mobile by the 2nd eating solids on the 3rd bored stupid (not that anyone noticed that bit) on days 4 and 5 stitches came out on 6 kicked out on 7.  This is about twice the recovery speed I experienced in 1976 and I felt almost OK for a CDer fairly soon after. As far as diet went, it appears that no two people are the same so they told me to take it easy, try a few things and watch what happens.  If it causes probs delete from the list. greg From darwin – Hide quoted text — Show quoted text – Gday people.         I had a few questions ’bout CD but can only find the one bloody FAQ on millions of sites . This seemed like a good place to ask for info. I’ve been diagnosed with CD of the upper-large bowel for a couple of years(I’m 20 now) , and live fairly normally if I stay away from fatty/milky/chilli/alcoholly foods and guzzle 6mg of Budesonide(Entocort) per day [don't know if any1 else knows that one - I'm in Australia and most posters here seem to not be]. Problem is , I had a barium enema (what evil cretin devised THAT torture) a few weeks ago showing stricture and a fistula , and now they want to cut a bit out . I was hoping someone could tell me about or point me to some info about this op (the surgeon and gastro-guy have been scint with the info), mainly stuff like recovery time and whether it really knocks the stuffing out of you . I was also wondering if any1 had suggestions about other stuff to cut out of the diet (from experience) , although I spose it differs between people . I read that some guts-doctors recommend you cut fibre (all fruit & veg) from your diet . Maybe I’ll try an extremely minimalist diet (like Windows in SAFE MODE) and get retested a few months from now (luckily the doc’s in no hurry to carve me up) . Does any1 know if the strictures can open themselves up (by healthier eating) or is surgery the only go ? Sorry to bombard you with questions , but I don’t see the doc for a couple of weeks , and I can’t seem to find info anywhere else. Thanx for any info – take it easy ! — Lee Borlace

Response:

Lee Welcome to the newsgroup. Your original post was better than two weeks ago, so I will e-mail this to you as well as posting it. I don’t know that I have a great answer to your question, but here goes. What a person can eat seems to vary from person to person. I went through three to four months keeping a ‘food diary’ of what I ate along with symptoms. This helped me to find out some of the thing I cannot eat. I found I am lactose intolerant, so I need to avoid milk. Also coffee causes some problems, but tea seems to be ok. Carbonated drinks seem to cause some problems, but that may be due to the increased gas that results. (Found the only one I can drink without problems is ‘ginger ale.’) The lower part of this message has a number of links with information about CD & UC. Here are a couple others. Joe’s Colon Wars. http://members.tripod.com/dexdelrillian/ ‘Read the day-to-day ramblings of a gutless bastard.’ (This is a fairly detailed account of Joe’s surgery, and what he went through.) And Joe does have a sense of humor. Rolf’s ‘Great Comebacks’ http://www.greatcomebacks.com/ Rolf was a fieldgold kicker for the San Diego Chargers (American Football) who continued to play several years after his surgery. His page has several links. I hope something here is of some help. Now here is the bigger list of links. These are all excellent sources of information, and excellent starting points in your search for answers. (Most of them have many additional ‘Links’.) Crohn’s & Colitis Foundation of America (CCFA) http://www.ccfa.org/ (click on ‘Medical Central’ to get to the ‘Library’ which has information on ‘Medications’ as well as many other topics.) (click on ‘Chapters & Events’ to locate a support group near you – if you live in the United States.) (I know there are also support groups in Canada – from the CCFC site. And I believe there are also support groups that can be found from the UK site and the Australian site.) (click on ‘Links’ to find one of the largest collection of links to medical pages, as well as Crohn’s & Colitis pages.) Crohn’s and Colitis Foundation of Canada (CCFC) (in English & French) http://www.ccfc.ca/ (click on the ‘Index’ {was near the upper left side of the page, after you chose english or french} to get an overview of the information available on this site.) National Association for Colitis and Crohn’s Disease (NACC) http://www.nacc.org.uk/ (This is the National Association for Colitis and Crohn’s Disease in the United Kingdom.) Australian Crohn’s and Colitis Association (ACCA) http://www.acca.net.au/ (There are separate sites for ‘Queensland’ and ‘South Australia’ and for a Support Group in New Zealand. These are found on the ‘Links’ page.) Links for many other National Support Organizations for Crohn’s and Colitis can be found on the ‘Links’ page of the CCFA site. Where some of these do not have a web site, addresses and telephone numbers, along with e-mail addresses (when available) are also listed there. ‘Living With Ulcerative Colitis’ http://www.ulcerativecolitis.com/ http://www.living-better.com/index.html  (The US site.) http://www.canada.living-better.com/index.html   (The Canadian site.) I am also going to mention this program. I managed to find them and joined this information program before I got on the internet. I found this program to be very helpful. This free information program is sponsored by ‘Proctor & Gamble’ and by ‘Proctor & Gamble Canada.’ There is an initial Information Packet, followed by a quarterly newsletter. The information on the web pages is useful even if you do not qualify for the information program. Some of the articles from the newsletter are archived on the US site. Here are the restrictions for the ‘Living With Ulcerative Colitis’ information program. You must live in the United States or Canada, and have Ulcerative Colitis. If you live in Canada, you must be taking Asacol to qualify for it. (At least this is my understanding of the restrictions.) There are several lists of ‘Frequently Asked Questions’ (FAQ) about Crohn’s and Colitis. They are usually posted on this newsgroup every couple weeks. These are several links to them. Inflamatory Bowel Disease, Frequently Asked Questions, Version 3.1 http://ibdfaq.freeshell.org/ Bill Robertson’s Inflammatory Bowel Disease Pages. http://qurlyjoe.bu.edu/cduchome.html The page with FAQ’s here also lists an FAQ for ‘Information Resources’ for IBD (Inflammatory Bowel Disease), and FAQ for ‘Collagenous Colitis’, and an FAQ for IBS (Irritable Bowel Syndrome). There are a multitude of links from this home page as well. ‘Collagenous Colitis’ (also called ‘Microscopic Colitis’ or ‘Lymphocytic Colitis’) is also one of the forms of IBD (Inflammatory Bowel Disease) along with the more commonly known ‘Crohn’s Disease’ and ‘Ulcerative Colitis.’ It was only recently discovered, and gets its name from the fact that the inflammation is not visible, but can only be detected under a microscope. And here are a few pages from people on this newsgroup. Steve Hylton’s alt.support.crohns-colitis on the WWW http://www.geocities.com/HotSprings/Falls/3298/ Darren’s Homepage. http://www2.netdoor.com/~darren/ Maryjo’s Homepage. http://community-1.webtv.net/MaryjoL/MYPAGE/ Steve Hudson’s IBDUK Page. http://members.tripod.com/shudson8472/ Marla’s Pain Forum Home Page. http://members.delphi.com/mogo69/index.html Shaz’s Ileostomy Page. http://www.geocities.com/HotSprings/Spa/8089/ Jeff Goldband’s Crohn’s, Colitis, and Ostomy Meeting Place. http://www.ccomp.org/ These are just a few of the great web pages by people who stop by this newsgroup. Look at the bottom of many of the messages to find more. Howard in Alaska – Hide quoted text — Show quoted text – Gday people.         I had a few questions ’bout CD but can only find the one bloody FAQ on millions of sites . This seemed like a good place to ask for info. I’ve been diagnosed with CD of the upper-large bowel for a couple of years(I’m 20 now) , and live fairly normally if I stay away from fatty/milky/chilli/alcoholly foods and guzzle 6mg of Budesonide(Entocort) per day [don't know if any1 else knows that one - I'm in Australia and most posters here seem to not be]. Problem is , I had a barium enema (what evil cretin devised THAT torture) a few weeks ago showing stricture and a fistula , and now they want to cut a bit out . I was hoping someone could tell me about or point me to some info about this op (the surgeon and gastro-guy have been scint with the info), mainly stuff like recovery time and whether it really knocks the stuffing out of you . I was also wondering if any1 had suggestions about other stuff to cut out of the diet (from experience) , although I spose it differs between people . I read that some guts-doctors recommend you cut fibre (all fruit & veg) from your diet . Maybe I’ll try an extremely minimalist diet (like Windows in SAFE MODE) and get retested a few months from now (luckily the doc’s in no hurry to carve me up) . Does any1 know if the strictures can open themselves up (by healthier eating) or is surgery the only go ? Sorry to bombard you with questions , but I don’t see the doc for a couple of weeks , and I can’t seem to find info anywhere else. Thanx for any info – take it easy ! — Lee Borlace

Response:

Gday people.         I had a few questions ’bout CD but can only find the one bloody FAQ on millions of sites . This seemed like a good place to ask for info. I’ve been diagnosed with CD of the upper-large bowel for a couple of years(I’m 20 now) , and live fairly normally if I stay away from fatty/milky/chilli/alcoholly foods and guzzle 6mg of Budesonide(Entocort) per day [don't know if any1 else knows that one - I'm in Australia and most posters here seem to not be]. Problem is , I had a barium enema (what evil cretin devised THAT torture) a few weeks ago showing stricture and a fistula , and now they want to cut a bit out . I was hoping someone could tell me about or point me to some info about this op (the surgeon and gastro-guy have been scint with the info), mainly stuff like recovery time and whether it really knocks the stuffing out of you . I was also wondering if any1 had suggestions about other stuff to cut out of the diet (from experience) , although I spose it differs between people . I read that some guts-doctors recommend you cut fibre (all fruit & veg) from your diet . Maybe I’ll try an extremely minimalist diet (like Windows in SAFE MODE) and get retested a few months from now (luckily the doc’s in no hurry to carve me up) . Does any1 know if the strictures can open themselves up (by healthier eating) or is surgery the only go ? Sorry to bombard you with questions , but I don’t see the doc for a couple of weeks , and I can’t seem to find info anywhere else. Thanx for any info – take it easy ! — Lee Borlace

Response:

Question:

Taosummer skrev i meldingen While researching Lactose Intolerance for another newsgroup I came across a connection to Crohn’s Disease. Lactose intolerance is caused by a deficiency in the enzyme Lactase. Lactase is produced by the intestinal mucosa. If the intestinal mucosa are diseased, they cease production of Lactase. Thus, if you have active Crohn’s you are probably also LI. But it’s the Crohn’s that is causing the LI, not the other way around.

But, is it likely that your colitis is Crohn’s if you aren’t Lactose Intolerant? I am not LI, but my doctors consider Crohn’s to be my diagnosis. I believe my problems is caused by Lymphocytic colitis. Fiorilla

Response:

While researching Lactose Intolerance for another newsgroup I came across a connection to Crohn’s Disease. Lactose intolerance is caused by a deficiency in the enzyme Lactase. Lactase is produced by the intestinal mucosa. If the intestinal mucosa are diseased, they cease production of Lactase. Thus, if you have active Crohn’s you are probably also LI. But it’s the Crohn’s that is causing the LI, not the other way around. The other interesting (although unrelated) factoid is that LI is the norm for most adults worldwide. With the exception of people of Northern European ancestry, everyone loses the ability to digest milk as they leave childhood. — Larry

Response:

- Hide quoted text — Show quoted text -While researching Lactose Intolerance for another newsgroup I came across a connection to Crohn’s Disease. Lactose intolerance is caused by a deficiency in the enzyme Lactase. Lactase is produced by the intestinal mucosa. If the intestinal mucosa are diseased, they cease production of Lactase. Thus, if you have active Crohn’s you are probably also LI. But it’s the Crohn’s that is causing the LI, not the other way around. The other interesting (although unrelated) factoid is that LI is the norm for most adults worldwide. With the exception of people of Northern European ancestry, everyone loses the ability to digest milk as they leave childhood. — Larry

Fascinating tidbit of info, Larry. Made me go "HMMMMMM" Teri from TN TerianeS.

Response:

- Hide quoted text — Show quoted text – Taosummer skrev i meldingen While researching Lactose Intolerance for another newsgroup I came across a connection to Crohn’s Disease. Lactose intolerance is caused by a deficiency in the enzyme Lactase. Lactase is produced by the intestinal mucosa. If the intestinal mucosa are diseased, they cease production of Lactase. Thus, if you have active Crohn’s you are probably also LI. But it’s the Crohn’s that is causing the LI, not the other way around. But, is it likely that your colitis is Crohn’s if you aren’t Lactose Intolerant? I am not LI, but my doctors consider Crohn’s to be my diagnosis. I believe my problems is caused by Lymphocytic colitis.

My guess is that if  your disease is confined to the colon you would still produce lactase in the small intestine. So that isn’t a good differentiator. If you have disease in your small intestine it is definitely not UC. Why does your doctor believe you have CD? The diagnosis is made by several tests, none of which are conclusive on their own. These include where the inflammation occurs (CD is usually patchy, UC contiguous), the presence or absence of granulomas (presence usually means CD), a blood test for CD, a genetic test, and the types of non-bowel related symptoms. Larry — Larry Finch ::(whew!)

Response:

Question:

Thank you for this info. I also have LC, but I take Salazopyrin for it (and there is no change in my condition). Fiorilla – Hide quoted text — Show quoted text – What is 6mp? Fiorilla 6mp is the generic name for Purinethol, an immunosuppressant drug.  It calms down an overactive immune system.  In larger doses it is used for treatment of some cancers, especially leukemia. Many doctors believe microscopic colitis to be an autoimmune disease.

Response:

I never can remember those names.  I always think of it as Maryjo’s colitis. LOL  Now I better run and hide!

Don’t feel so bad!  I was just going to suggest that they write to Maryjo and ask her!  LOL!     Margie

Response:

What is 6mp? Fiorilla 6mp is the generic name for Purinethol, an immunosuppressant drug.  It

calms down an overactive immune system.  In larger doses it is used for treatment of some cancers, especially leukemia. Many doctors believe microscopic colitis to be an autoimmune disease. – Hide quoted text — Show quoted text – –WebTV-Mail-32053-410 Content-Type: Text/Plain; Charset=US-ASCII Content-Transfer-Encoding: 7Bit I think that is because Microscopic Colitis is diagnosed less then UC or CD … and because it is microscopic it is misdiagnosed too many times ….. There may be many out there with it at various levels, but without an outstanding GI … may never get the proper diagnosis –WebTV-Mail-32053-410 I’d like to know the mean age when this disease DISappears!  Biopsy diagnosed with collagenous colitis over 3 years ago.  Asulfadine didn"t help.  Asacol didn’t help.Prednisone at high doses did help, but left me with glaucoma and osteoporosis, and while on it I lost my hair and gained 40lbs. Also tried a gluten free diet for a year, under gastro’s orders. I am now consuming gluten for the past 3 weeks with no ill effects I had 4 blood tests for celiac disease which came back negative.  (These were done before going GF). I have been on 6mp for a year now.  It has enabled me to get off pred and for that reason alone I love it.  Tolerating 6mp fairly well. Blood tests are done on a regular basis.  Since I am now relatively free of symptoms, I wonder what my gastro will do when I see him in 2 months. I’d really like to get of all meds for this disease, but worry what will happen if he takes me off 6mp. Better health to all Kyrie              Content-Description: signature Content-Disposition: Inline Content-Type: Text/HTML; Charset=US-ASCII Content-Transfer-Encoding: 7Bit <html <body bgcolor="white" text="darkblue" </body </html <BR<a href="http://community.webtv.net/MaryjoL/OURGRANDCHILDREN"OUR GRANDCHILDREN</a <BR<a href="http://community.webtv.net/MaryjoL/MYPAGE"MY PAGE</a –WebTV-Mail-32053-410– Before you buy.

Before you buy.

Response:

What is 6mp? Fiorilla – Hide quoted text — Show quoted text – –WebTV-Mail-32053-410 Content-Type: Text/Plain; Charset=US-ASCII Content-Transfer-Encoding: 7Bit I think that is because Microscopic Colitis is diagnosed less then UC or CD … and because it is microscopic it is misdiagnosed too many times ….. There may be many out there with it at various levels, but without an outstanding GI … may never get the proper diagnosis –WebTV-Mail-32053-410 I’d like to know the mean age when this disease DISappears!  Biopsy diagnosed with collagenous colitis over 3 years ago.  Asulfadine didn"t help.  Asacol didn’t help.Prednisone at high doses did help, but left me with glaucoma and osteoporosis, and while on it I lost my hair and gained 40lbs. Also tried a gluten free diet for a year, under gastro’s orders. I am now consuming gluten for the past 3 weeks with no ill effects I had 4 blood tests for celiac disease which came back negative.  (These were done before going GF). I have been on 6mp for a year now.  It has enabled me to get off pred and for that reason alone I love it.  Tolerating 6mp fairly well. Blood tests are done on a regular basis.  Since I am now relatively free of symptoms, I wonder what my gastro will do when I see him in 2 months. I’d really like to get of all meds for this disease, but worry what will happen if he takes me off 6mp. Better health to all Kyrie              Content-Description: signature Content-Disposition: Inline Content-Type: Text/HTML; Charset=US-ASCII Content-Transfer-Encoding: 7Bit <html <body bgcolor="white" text="darkblue" </body </html <BR<a href="http://community.webtv.net/MaryjoL/OURGRANDCHILDREN"OUR GRANDCHILDREN</a <BR<a href="http://community.webtv.net/MaryjoL/MYPAGE"MY PAGE</a –WebTV-Mail-32053-410– Before you buy.

Response:

I think that is because Microscopic Colitis is diagnosed less then UC or CD … and because it is microscopic it is misdiagnosed too many times ….. There may be many out there with it at various levels, but without an outstanding GI … may never get the proper diagnosis

OURGRANDCHILDRENMY PAGE

Response:

I am not even close to 6o yet !!!!!  But I have talked to others with it who are in their 40’s ……. but I had suffered with these symptoms on and off since I was 16 and diagnosed with IBS … and at 26 the diagnosis was changed to Mucus Colitis … but neither times did I have a colonoscopy done …. until April of ‘98 … when I had a GI Dr who insisted it get done, she also forwarded my results for verification to the University Hospital in Gainesville …. did I get the proper diagnosis… now the hard part is what meds will put me in a remission and leave me there for any length of time … !!

OURGRANDCHILDRENMY PAGE

Response:

talking with others that suffer from microscopic colitis ….. I have seen a majority of them are in the mid 40’s though have suffered from gut problems for years prior to diagnosis … which like myself, who suffered since I was 16 … but not diagnosed properly till I had a colonoscopy at age 42 … I don’t think that there is a mean age as it was only discovered in the 70’s …. and they still do not know enough on what causes it or in what relation it has to the other IBD ’s ..Though I do know that the meds and course of treatment is almost the same as UC and  CD I am currently on Asacol , as the primary IBD med … but did a stint of 15 months of prednisone … without much luck … I am still waiting for a remission that lasts longer then a week Maryjo – who cant wait till her ship comes in so she can meet all the newsgroup friends

OURGRANDCHILDRENMY PAGE

Response:

–WebTV-Mail-32053-410 Content-Type: Text/Plain; Charset=US-ASCII Content-Transfer-Encoding: 7Bit I think that is because Microscopic Colitis is diagnosed less then UC or CD … and because it is microscopic it is misdiagnosed too many times ….. There may be many out there with it at various levels, but without an outstanding GI … may never get the proper diagnosis –WebTV-Mail-32053-410 I’d like to know the mean age when this disease DISappears!  Biopsy

diagnosed with collagenous colitis over 3 years ago.  Asulfadine didn"t help.  Asacol didn’t help.Prednisone at high doses did help, but left me with glaucoma and osteoporosis, and while on it I lost my hair and gained 40lbs. Also tried a gluten free diet for a year, under gastro’s orders. I am now consuming gluten for the past 3 weeks with no ill effects I had 4 blood tests for celiac disease which came back negative.  (These were done before going GF). I have been on 6mp for a year now.  It has enabled me to get off pred and for that reason alone I love it.  Tolerating 6mp fairly well. Blood tests are done on a regular basis.  Since I am now relatively free of symptoms, I wonder what my gastro will do when I see him in 2 months. I’d really like to get of all meds for this disease, but worry what will happen if he takes me off 6mp. Better health to all Kyrie              Content-Description: signature – Hide quoted text — Show quoted text – Content-Disposition: Inline Content-Type: Text/HTML; Charset=US-ASCII Content-Transfer-Encoding: 7Bit <html <body bgcolor="white" text="darkblue" </body </html <BR<a href="http://community.webtv.net/MaryjoL/OURGRANDCHILDREN"OUR GRANDCHILDREN</a <BR<a href="http://community.webtv.net/MaryjoL/MYPAGE"MY PAGE</a –WebTV-Mail-32053-410–

Before you buy.

Response:

(…)it says that "The mean age presentation of age for these disorders is 60 to 65 yr, with a female predominance…"

The "typical" patient is a middle-aged woman; but it is seen in men, children as young as seven and older people also.    ….as it says on http://www.malinowski.com/colitis.htm ! I am 23, not fully diagnosed yet, but my doctor says I probably have Lymphocytic colitis. And I am nowhere near my 60s yet… Fiorilla

Response:

Maryjo What you said about getting doctors educated is SO TRUE. Even the ‘Merck Manual’ has a separate listing for ‘Crohn’s Disease’ (pages 302-307) and for ‘Ulcerative Colitis’ (pages 307-312); but wouldn’t you know that ‘Microscopic Colitis’ is listed under ‘diarrhea’ (pages 276). And that’s in the 1999 edition. Howard

Hi Howard, microscopic colitis is also listed on page 314 of the 1999 Merck Manual.  It’s under proctosigmoidoscopy and it says that "The mean age presentation of age for these disorders is 60 to 65 yr, with a female predominance…" I’m no where near 60.  MaryJo do you know anything about the mean age of appearance of this disorder? Mel – Hide quoted text — Show quoted text – other kind either, but since I am stuck with it , I might as well know what it is …. Now if the Drs would only get themselves involved in learning about and finding the right combination of meds to settle it down !! Maryjo OUR GRANDCHILDREN MY PAGE

Response:

Jim Look under microscopic colitis …. or click on my homepage to find info on it as LC is also in the microscopic colitis ….. Maryjo

OURGRANDCHILDRENMY PAGE

Response:

other kind either, but since I am stuck with it , I might as well know what it is …. Now if the Drs would only get themselves involved in learning about and finding the right combination of meds to settle it down !! Maryjo

OURGRANDCHILDRENMY PAGE

Response:

Maryjo What you said about getting doctors educated is SO TRUE. Even the ‘Merck Manual’ has a separate listing for ‘Crohn’s Disease’ (pages 302-307) and for ‘Ulcerative Colitis’ (pages 307-312); but wouldn’t you know that ‘Microscopic Colitis’ is listed under ‘diarrhea’ (pages 276). And that’s in the 1999 edition. Howard – Hide quoted text — Show quoted text – other kind either, but since I am stuck with it , I might as well know what it is …. Now if the Drs would only get themselves involved in learning about and finding the right combination of meds to settle it down !! Maryjo OUR GRANDCHILDREN MY PAGE

Response:

   My wife has just been told about this and we can’t find anything on it – even the Dr.’s are leaving us high and dry .  Any help would be great . Thank – Jim

Response:

Jim Lymphocytic Colitis is also known as Microscopic Colitis or Collagenous Colitis. More information of the following web pages. http://www.malinowski.com/colitis.htm Maryjo home page. Also very good. http://community-1.webtv.net/MaryjoL/MYPAGE/ Howard – Hide quoted text — Show quoted text –    My wife has just been told about this and we can’t find anything on it – even the Dr.’s are leaving us high and dry .  Any help would be great . Thank – Jim

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Question:

Crohns, UC , and Microscopic colitis are ALL IBD’s ….. !! They all react with same meds but manifest itself differently … where UC are like ulcers that are in the colon and Microscopic Colitis are microscopic in nature and can not be seen with just a look see with a colonoscopy … Tissue samples are taken from many areas of the colon and and diagnosed under a microscope as it is too small for the naked eye to pick up … Go into my homepage and check out more information Maryjo

OURGRANDCHILDRENMY PAGE

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Lymphocytic and Collagenous Colitis fall under the heading of Microscopic Colitis, and affects only the colon.  Crohns Disease can affect the entire intestinal tract, from the mouth to the anus.  Check out MaryJo’s page, plus Judy’s website at: http://www.malinowski.com/colitis.htm for more info. Hope this helps. – Hide quoted text — Show quoted text – I had a Colonoscopy, where the biopsis indicated Microscopic colitis. Then I had a CT scan of the upper part of the abdomen, that said my pancreas apperead to be a bit marked/visible (?). When I talked to my doctor at the hospital, I understood that it’s likely that I have Lymphocytic colitis. But in my case record (journal) it says that I might have Crohn’s with pancreatis. I thought Crohn’s and Microscopic colitis are two very different diseases. I am confused. Any hints would be highly appreciated! Fiorilla

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I thought Crohn’s and Microscopic colitis are two very different diseases.

This sounds like a question for Maryjo!  She would know how to explain it best as I believe she has the Microscopic one.  I could be wrong, though. Maryjo????   Margie

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I can’t tell you the details, but I can tell you that while Crohns and Colitis are diffent diseases, from a diagnostic point of view they are difficult to distinguish. Over the years, I had some excellent gastrointestinal physicians examine me. They were divided over whether I had Crohn’s or Colitis, and all of them conceded it could be one or the other. It was only until I had surgery that I got a definitive diagnosis: Crohns Disease. It’s a good news/bad news proposition. If you have Crohns, you run somewhat less of a risk of developing colon cancer down the road. On the other hand, Colitis attacks only a portion of the digestive tract and can often be eliminated by surgery, whereas Crohns is systemmatic, and while surgery is often both helpful and necessary, you can always get a subsequent flareup anywhere from the anus to the mouth. I have been told that if you have problems with fistulas, odds are you have Crohns Disease. Often, however, people with Crohns don’t develop fistulas, or don’t develop them for a long time.

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I had a Colonoscopy, where the biopsis indicated Microscopic colitis. Then I had a CT scan of the upper part of the abdomen, that said my pancreas apperead to be a bit marked/visible (?). When I talked to my doctor at the hospital, I understood that it’s likely that I have Lymphocytic colitis. But in my case record (journal) it says that I might have Crohn’s with pancreatis. I thought Crohn’s and Microscopic colitis are two very different diseases. I am confused. Any hints would be highly appreciated! Fiorilla

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MaryJo to the rescue !!!  :) — MrsRat Admin XWorld NetWork http://www.xworld.org http://sefl.satelnet.org/~brats/

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Check out the newsletter group that Judy Malinowski started.  You can look thru her website & read all the past issues online there. http://www.malinowski.com/colitis.htm I was diagnosed about a month ago with lymphocytic colitis, I amy not have the spelling right but this is what I was diagnosed with.. does anyone have any information on this, I cant seem to find any. Please help! Karra

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I was diagnosed about a month ago with lymphocytic colitis, I amy not have the spelling right but this is what I was diagnosed with.. does anyone have any information on this, I cant seem to find any. Please help! Karra

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Karra Lymphotic colitis is in the microscopic family and if you click on MY PAGE you will find lots of useful information !!  I have Collagenous Colitis which is also in the Microscopic Family Maryjo

OURGRANDCHILDRENMY PAGE

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