Question:
<<I was also on Flagyl Who put you on Flagyl? That’s used for CD, not for UC, unless you have some infectious complication. Best of luck with Dr. Sandborn. Good choice.
Response:
I was routinely prescribed Flgyl for UC JC
Response:
Just a quick update to let everyone know what’s going on: I have gone back to my old GI doctor an hour across town. He was very upset with the treatment (or lack thereof) from my now former doctor. He said putting me back on 60 mg of Pred would do nothing since I was pooping it all out. Just because it was close to his (old doc’s) Christmas vacation… My new doc took me down to 40 mg of Prednisone. I was also on Flagyl 500mg 2x daily for 10 days, Lomotil 2 pills 4x daily, Rowasa enemas and Canasa suppositories. I started this Saturday and did ok. Sunday was really bad – running to the bathroom and lot’s of blood. Monday and Tuesday were not as bad in terms of frequency, but worse with the blood. Today has started off really bad – running at least 6 times in just a couple hours. Nedless to say, nothing is working. I will be going into the hospital this afternoon for IV steroids. I hope I’m out for New Years. Finally, I am trying to get an appointmet with Dr. Sandborn at the Mayo Clinic in MN. I’m hoping I can get in in late January. I will update when I get back home from the hospital. Thanks to everyone and good luck. – Hide quoted text — Show quoted text -OK – I have been lurking fo rquite some time and feel it is now my turn to participate. I have had UC for about 10 years. I am now 30. I have been having some problems the past 2 years or so. In August, I really took a turn for the worse. I had some trips planned for my 30th and thought I was going to have to cancel. Fortunately (I suppose), my doctor got me on 20 mg of Prednisone. That was about 2 days before I was supposed to drive from Metro-Atlanta to Destin, Florida for a fishing trip for the day, then fly to Hilton Head to meet my wife, son and best friends. The Pred kicked in enough to enable me to go. Within 3-4 days, I was having problems again (running to the bathroom). My doctor told me to go up to 40 mg of Pred. Same thing happened, I was ok for a little while, then I went up to 60 mg of Pred (I really hate that stuff). I had also decided I needed to go on medical leave from work. I was out for about 6 weeks. Anyway, my doctor discussed my options with me: 1) try to step down off the Prednisone (it probably doesn’t deserve the respect of being capitalized). We both assumed this wouldn’t work because I had so much trouble getting into remission. 2) Imuran. He said this is a great drug, except for young people. He would not want my wife and I to get pregnant for 6 months after getting off that drug. That would mean 2 1/2 years! We had been trying to get pregnant at the time, too. This was not a viable option. 3) Remicade. This is unproven in UC and I think only has a "fair" success rate in CD. 4) Surgery. Not an option at this time 5) Get a second opinion. I went with option 1 as it was the safest. It seemed to be going ok. I would have about 1 bad day every week or 2 with some bad pains. I was going down by 5 mg every 5 days. Last Friday morning, I was having those pains. I hoped it would go away again. It didn’t. Saturday we went out for breakfast and as soon as I sat down, I knew from experience I was in trouble. I popped a Tylenol 3 and was able to survive. Sunday was worse than Saturday. Monday worse than Sunday, so I called the Dr. He said give it until Wednesday to see if it persists. Boy did it ever. Running to the bathroom about 10 times a day. Some blood in my stool. EXTREME pain. I wanted to lay down, but I was on the toilet. I called the doctor on Wednesday and was told to go back on 60 mg of Pred. I just got off it on Monday (12/10). I also made an appointment for this Monday. This course of action didn’t seem right to me. It failed the first time, why would it be different a few days later? As I suspected, the doctor was out of the office Thursday and most of Friday, hence the recommendation to go back to the dreaded Pred. I left a few things out. My wife got pregnant in September and miscarried in October. She got pregnant right away and things look really good this time. Except she has been nauseous for months. That’s the good news. Now when it rains, it pours. As if my health issues weren’t enough, I went back on medical leave this week. Things were already looking bad. I went to let my three dogs out last night (they are family members) and one of them wouldn’t get up to go. She didn’t look good, so I layed down beside her. Within a few minutes, she was dead. Out of nowhere. No warning. Every time I say things have to get better, they get worse. My job sucks, too. This brings me to my real question and purpose for writing: does anyone know of a UC specialist that they feel comfortable recommending? I live in Metro-Atlanta, but I will travel. I don’t know if I should look at something like the Mayo Clinic? Temple U? somewhere in New York? I hate New York, but I could get a good hot dog up there! LA? I will try to see another doctor down here early next week, but who better to ask for an opinion than this group? Thanks in advance, sorry about my long-winded story and I hope this makes sense. I have had a really long and emotional week, so I apologize if I jumped around too much. Thank you for your support. T.J.
Response:
Sweet home Chicago. 
I was just reading a good article called Chinese Medicine’s Treatment of Chronic Digestive Disorders. I pass the link along,enjoy. http://www.ormed.edu/newsletters/chineseherbal.html – Hide quoted text — Show quoted text – Beth- I’ve been seeing University of Chicago pop up quite a bit in my research and have Stephen Hanauer on the top of my list. Do you have contact information for him? How did you find him? How did he save your colon if you don’t mind my asking? What worked for you? Also, please tell me more about the Chinese medicine.
Response:
Beth- I’ve been seeing University of Chicago pop up quite a bit in my research and have Stephen Hanauer on the top of my list. Do you have contact information for him? How did you find him? How did he save your colon if you don’t mind my asking? What worked for you? Also, please tell me more about the Chinese medicine. Thanks. – Hide quoted text — Show quoted text -The University of Chicago is very good – Dr. Steven Hanauer saved my colon 2 years ago. He has an international reputation. I also "do" Chinese medicine and was able to get my treatments at the U of C. Good luck – if you want more details I can provide them. Beth OK – I have been lurking fo rquite some time and feel it is now my turn to participate. I have had UC for about 10 years. I am now 30. I have been having some problems the past 2 years or so. In August, I really took a turn for the worse. I had some trips planned for my 30th and thought I was going to have to cancel. Fortunately (I suppose), my doctor got me on 20 mg of Prednisone. That was about 2 days before I was supposed to drive from Metro-Atlanta to Destin, Florida for a fishing trip for the day, then fly to Hilton Head to meet my wife, son and best friends. The Pred kicked in enough to enable me to go. Within 3-4 days, I was having problems again (running to the bathroom). My doctor told me to go up to 40 mg of Pred. Same thing happened, I was ok for a little while, then I went up to 60 mg of Pred (I really hate that stuff). I had also decided I needed to go on medical leave from work. I was out for about 6 weeks. Anyway, my doctor discussed my options with me: 1) try to step down off the Prednisone (it probably doesn’t deserve the respect of being capitalized). We both assumed this wouldn’t work because I had so much trouble getting into remission. 2) Imuran. He said this is a great drug, except for young people. He would not want my wife and I to get pregnant for 6 months after getting off that drug. That would mean 2 1/2 years! We had been trying to get pregnant at the time, too. This was not a viable option. 3) Remicade. This is unproven in UC and I think only has a "fair" success rate in CD. 4) Surgery. Not an option at this time 5) Get a second opinion. I went with option 1 as it was the safest. It seemed to be going ok. I would have about 1 bad day every week or 2 with some bad pains. I was going down by 5 mg every 5 days. Last Friday morning, I was having those pains. I hoped it would go away again. It didn’t. Saturday we went out for breakfast and as soon as I sat down, I knew from experience I was in trouble. I popped a Tylenol 3 and was able to survive. Sunday was worse than Saturday. Monday worse than Sunday, so I called the Dr. He said give it until Wednesday to see if it persists. Boy did it ever. Running to the bathroom about 10 times a day. Some blood in my stool. EXTREME pain. I wanted to lay down, but I was on the toilet. I called the doctor on Wednesday and was told to go back on 60 mg of Pred. I just got off it on Monday (12/10). I also made an appointment for this Monday. This course of action didn’t seem right to me. It failed the first time, why would it be different a few days later? As I suspected, the doctor was out of the office Thursday and most of Friday, hence the recommendation to go back to the dreaded Pred. I left a few things out. My wife got pregnant in September and miscarried in October. She got pregnant right away and things look really good this time. Except she has been nauseous for months. That’s the good news. Now when it rains, it pours. As if my health issues weren’t enough, I went back on medical leave this week. Things were already looking bad. I went to let my three dogs out last night (they are family members) and one of them wouldn’t get up to go. She didn’t look good, so I layed down beside her. Within a few minutes, she was dead. Out of nowhere. No warning. Every time I say things have to get better, they get worse. My job sucks, too. This brings me to my real question and purpose for writing: does anyone know of a UC specialist that they feel comfortable recommending? I live in Metro-Atlanta, but I will travel. I don’t know if I should look at something like the Mayo Clinic? Temple U? somewhere in New York? I hate New York, but I could get a good hot dog up there! LA? I will try to see another doctor down here early next week, but who better to ask for an opinion than this group? Thanks in advance, sorry about my long-winded story and I hope this makes sense. I have had a really long and emotional week, so I apologize if I jumped around too much. Thank you for your support. T.J.
Response:
I second the recommendation of Dr. Hanauer. I have heard him speak and he is amazing. Rebecca
The University of Chicago is very good – Dr. Steven Hanauer saved my colon 2 years ago. He has an international reputation. I also "do" Chinese medicine and was able to get my treatments at the U of C. Good luck – if you want more details I can provide them. Beth
– Hide quoted text — Show quoted text – OK – I have been lurking fo rquite some time and feel it is now my turn to participate. I have had UC for about 10 years. I am now 30. I have been having some problems the past 2 years or so. In August, I really took a turn for the worse. I had some trips planned for my 30th and thought I was going to have to cancel. Fortunately (I suppose), my doctor got me on 20 mg of Prednisone. That was about 2 days before I was supposed to drive from Metro-Atlanta to Destin, Florida for a fishing trip for the day, then fly to Hilton Head to meet my wife, son and best friends. The Pred kicked in enough to enable me to go. Within 3-4 days, I was having problems again (running to the bathroom). My doctor told me to go up to 40 mg of Pred. Same thing happened, I was ok for a little while, then I went up to 60 mg of Pred (I really hate that stuff). I had also decided I needed to go on medical leave from work. I was out for about 6 weeks. Anyway, my doctor discussed my options with me: 1) try to step down off the Prednisone (it probably doesn’t deserve the respect of being capitalized). We both assumed this wouldn’t work because I had so much trouble getting into remission. 2) Imuran. He said this is a great drug, except for young people. He would not want my wife and I to get pregnant for 6 months after getting off that drug. That would mean 2 1/2 years! We had been trying to get pregnant at the time, too. This was not a viable option. 3) Remicade. This is unproven in UC and I think only has a "fair" success rate in CD. 4) Surgery. Not an option at this time 5) Get a second opinion. I went with option 1 as it was the safest. It seemed to be going ok. I would have about 1 bad day every week or 2 with some bad pains. I was going down by 5 mg every 5 days. Last Friday morning, I was having those pains. I hoped it would go away again. It didn’t. Saturday we went out for breakfast and as soon as I sat down, I knew from experience I was in trouble. I popped a Tylenol 3 and was able to survive. Sunday was worse than Saturday. Monday worse than Sunday, so I called the Dr. He said give it until Wednesday to see if it persists. Boy did it ever. Running to the bathroom about 10 times a day. Some blood in my stool. EXTREME pain. I wanted to lay down, but I was on the toilet. I called the doctor on Wednesday and was told to go back on 60 mg of Pred. I just got off it on Monday (12/10). I also made an appointment for this Monday. This course of action didn’t seem right to me. It failed the first time, why would it be different a few days later? As I suspected, the doctor was out of the office Thursday and most of Friday, hence the recommendation to go back to the dreaded Pred. I left a few things out. My wife got pregnant in September and miscarried in October. She got pregnant right away and things look really good this time. Except she has been nauseous for months. That’s the good news. Now when it rains, it pours. As if my health issues weren’t enough, I went back on medical leave this week. Things were already looking bad. I went to let my three dogs out last night (they are family members) and one of them wouldn’t get up to go. She didn’t look good, so I layed down beside her. Within a few minutes, she was dead. Out of nowhere. No warning. Every time I say things have to get better, they get worse. My job sucks, too. This brings me to my real question and purpose for writing: does anyone know of a UC specialist that they feel comfortable recommending? I live in Metro-Atlanta, but I will travel. I don’t know if I should look at something like the Mayo Clinic? Temple U? somewhere in New York? I hate New York, but I could get a good hot dog up there! LA? I will try to see another doctor down here early next week, but who better to ask for an opinion than this group? Thanks in advance, sorry about my long-winded story and I hope this makes sense. I have had a really long and emotional week, so I apologize if I jumped around too much. Thank you for your support. T.J.
Response:
The University of Chicago is very good – Dr. Steven Hanauer saved my colon 2 years ago. He has an international reputation. I also "do" Chinese medicine and was able to get my treatments at the U of C. Good luck – if you want more details I can provide them. Beth – Hide quoted text — Show quoted text – OK – I have been lurking fo rquite some time and feel it is now my turn to participate. I have had UC for about 10 years. I am now 30. I have been having some problems the past 2 years or so. In August, I really took a turn for the worse. I had some trips planned for my 30th and thought I was going to have to cancel. Fortunately (I suppose), my doctor got me on 20 mg of Prednisone. That was about 2 days before I was supposed to drive from Metro-Atlanta to Destin, Florida for a fishing trip for the day, then fly to Hilton Head to meet my wife, son and best friends. The Pred kicked in enough to enable me to go. Within 3-4 days, I was having problems again (running to the bathroom). My doctor told me to go up to 40 mg of Pred. Same thing happened, I was ok for a little while, then I went up to 60 mg of Pred (I really hate that stuff). I had also decided I needed to go on medical leave from work. I was out for about 6 weeks. Anyway, my doctor discussed my options with me: 1) try to step down off the Prednisone (it probably doesn’t deserve the respect of being capitalized). We both assumed this wouldn’t work because I had so much trouble getting into remission. 2) Imuran. He said this is a great drug, except for young people. He would not want my wife and I to get pregnant for 6 months after getting off that drug. That would mean 2 1/2 years! We had been trying to get pregnant at the time, too. This was not a viable option. 3) Remicade. This is unproven in UC and I think only has a "fair" success rate in CD. 4) Surgery. Not an option at this time 5) Get a second opinion. I went with option 1 as it was the safest. It seemed to be going ok. I would have about 1 bad day every week or 2 with some bad pains. I was going down by 5 mg every 5 days. Last Friday morning, I was having those pains. I hoped it would go away again. It didn’t. Saturday we went out for breakfast and as soon as I sat down, I knew from experience I was in trouble. I popped a Tylenol 3 and was able to survive. Sunday was worse than Saturday. Monday worse than Sunday, so I called the Dr. He said give it until Wednesday to see if it persists. Boy did it ever. Running to the bathroom about 10 times a day. Some blood in my stool. EXTREME pain. I wanted to lay down, but I was on the toilet. I called the doctor on Wednesday and was told to go back on 60 mg of Pred. I just got off it on Monday (12/10). I also made an appointment for this Monday. This course of action didn’t seem right to me. It failed the first time, why would it be different a few days later? As I suspected, the doctor was out of the office Thursday and most of Friday, hence the recommendation to go back to the dreaded Pred. I left a few things out. My wife got pregnant in September and miscarried in October. She got pregnant right away and things look really good this time. Except she has been nauseous for months. That’s the good news. Now when it rains, it pours. As if my health issues weren’t enough, I went back on medical leave this week. Things were already looking bad. I went to let my three dogs out last night (they are family members) and one of them wouldn’t get up to go. She didn’t look good, so I layed down beside her. Within a few minutes, she was dead. Out of nowhere. No warning. Every time I say things have to get better, they get worse. My job sucks, too. This brings me to my real question and purpose for writing: does anyone know of a UC specialist that they feel comfortable recommending? I live in Metro-Atlanta, but I will travel. I don’t know if I should look at something like the Mayo Clinic? Temple U? somewhere in New York? I hate New York, but I could get a good hot dog up there! LA? I will try to see another doctor down here early next week, but who better to ask for an opinion than this group? Thanks in advance, sorry about my long-winded story and I hope this makes sense. I have had a really long and emotional week, so I apologize if I jumped around too much. Thank you for your support. T.J.
Response:
I’m looking for the original person that wrote this post- Thrasher. I have some information for you but I tried to send you an e-mail and it wouldn’t go through- Please send out your address if you can then I can forward it to you.
Response:
Thanks Chris for your support. While I do believe in getting the best medical diagnosis I also believe that there are many more people who would benefit from doing as you have done if they would give it an honest try. There are some very knowledgable people in this ng who can help sort through the medical information but there are only a few voices who have spoken up for the alternatives which are generally not accepted by the medical profession. But to that I say phuwie! You can’t deny success. Also, you are absolutely correct about the mainstream paradigm for treatment. Luckily not all doctors prescibe to that. There is a growing body of physicians who practice what is called integrative medicine. That incorporates a combination of holistic and standard medical practices. Thank God my doc was one of them. He introduced me to the theory of dysbiosis which is an imbalance of bacteria in the intestines. I’ve been on a program of antibiotics, probiotics and other nutritional supplements which have helped me a great deal. I also take asacol but by itself that had limited results. Anyway I could go on and bore everyone to death but I’m out of time. Keep posting, people in this ng need to know all of their options. Take care and hope your holidays are good. Jeff2 or too – Hide quoted text — Show quoted text – Glad someone came out and said that Jeff2,I completly agree with the lifestyle and eating habits part. My GI docs have all said I could eat whatever I can, which I think is bad advice. My diet has changed 180 degrees which has helped me very much (no trans-fats,much less sugar,whole foods,etc). Correct me if I’m wrong but it seems mainstream medicines only approach (btw I have UC not CD) is Asacol,Steroids,Surgery which I couldn’t accept. I have been doing well on a combo of real food (I buy & prepare everything I eat),a good probiotic, and accupuncture. You have to explore options outside of the mainstream which has helped many, and I know has helped me. Funny how the doctors only talk about the options that they know about and not the ones that really help. The American Medical Society is so blinded by their own process that they fail to acknowledge any of the alternative approaches which have proven beyond a doubt to help many people. There are many things you can do and need to know about contributing factors with UC. I have UC and have been able to control it by learning what types of foods are bad for me. Also antibiotics and probiotics have been proven to be useful. A good quality antioxidant can do more to help then the drugs that the medical profession will sell you. You can ignore this information but doing so will probably lead to the ultimate medical cure – surgical removal of your entire colon. There are others in this ng who can help provide the information you need to develope a healthier lifestyle and put your body on the road to recovery. In some ways IBD is a degenerative disease and it has a progression and also a regression. Find out what you can do to regress the symptoms. It’s not that hard. Just start by figuring out what you do that causes the progression of the disease and then reverse the process. Along with that there are things you can do or take that can help the healing process. Don’t expect the doctors to have you examine your lifestyle or eating habits. It amazes me that the majority of them don’t think that what you eat has anything to do with your intestinal disease – that would make too much sense. If you want to know more send me an email. If not then I wish you well and good luck. Personally I do not trust my health entirely to the doctors, although I do get their opinions and diagnosis and take some meds, I’m not stupid, I’ll do whatever works but the western paradigm is totally flawed and biased towards profit and not health. ‘Nuf of my rambling, keep reading and researching, you will be amazed that there are people who have totally regressed their disease to a point where it is not even detectable. Good luck and take care. Jeff
Response:
Paul, If you want to get a more accurate diagnosis and thus be able to know your surgical options in the future, how well Remicade and other treatments will work in combination with one another have you urn doctor contact Promethius Lab and get a diffinative test done. Yes, some here have said it is 80% accurate put 80% is pretty good in my book. That in combination with accurate reading of your biopsies by a specialist in diagnosing IBD and you will have your answer. Treatment should be tailored to the disease. Additionally, if you have UC the chances of cancer is much greater and requires diligent annual colonoscopies with biopsies. You and your wife have a child coming and you owe it to your growing family to make sure you are as well as you can possibly be. With CD they have identified the NOD 2 gene among others and your child is at risk to some extent. There are many families with either CD or UC in every generation. The expression of the gene can reveal itself in the form of other autoimmune illness, for instance I have CD of the colon and my son has sporiatic arthritis and takes a drug similar to Remicade, Enbrel. Years ago when I was diagnosed and I hemorrhaged there was only the ASA preparations and prednisone, now there are other drugs. Everyone might not think the treatment of IBD has made any progress, but it has. What hasn’t changed is the cavalier approach many doctors take in diagnosing and treating it. The key to the best possible health is finding a doctor who is part clinician and part researcher willing to monitor research and transplate it into practice, to see you as an individual and work hand in hand with you and your diseases particular expression. Only by monitoring the signs and symptoms of your disease and thus being able to intervene when a flare begins are you able to avoid life threatening complications. When your child is born you won’t accept a pediatrician’s diagnosis of "Maybe he’s got a cold, or it might be pneumonia." "The rash looks like contact dermatitis but it could be the peticia that appears as a prodrom to leukemia." — Pearl L
– Hide quoted text — Show quoted text – Welcome Paul. Glad you came out of lurking mode. : ) — Take Care, Sherry :o) OK – I have been lurking fo rquite some time and feel it is now my turn to participate. I have had UC for about 10 years. I am now 30. I have been having some problems the past 2 years or so. In August, I really took a turn for the worse. I had some trips planned for my 30th and thought I was going to have to cancel. Fortunately (I suppose), my doctor got me on 20 mg of Prednisone. That was about 2 days before I was supposed to drive from Metro-Atlanta to Destin, Florida for a fishing trip for the day, then fly to Hilton Head to meet my wife, son and best friends. The Pred kicked in enough to enable me to go. Within 3-4 days, I was having problems again (running to the bathroom). My doctor told me to go up to 40 mg of Pred. Same thing happened, I was ok for a little while, then I went up to 60 mg of Pred (I really hate that stuff). I had also decided I needed to go on medical leave from work. I was out for about 6 weeks. Anyway, my doctor discussed my options with me: 1) try to step down off the Prednisone (it probably doesn’t deserve the respect of being capitalized). We both assumed this wouldn’t work because I had so much trouble getting into remission. 2) Imuran. He said this is a great drug, except for young people. He would not want my wife and I to get pregnant for 6 months after getting off that drug. That would mean 2 1/2 years! We had been trying to get pregnant at the time, too. This was not a viable option. 3) Remicade. This is unproven in UC and I think only has a "fair" success rate in CD. 4) Surgery. Not an option at this time 5) Get a second opinion. I went with option 1 as it was the safest. It seemed to be going ok. I would have about 1 bad day every week or 2 with some bad pains. I was going down by 5 mg every 5 days. Last Friday morning, I was having those pains. I hoped it would go away again. It didn’t. Saturday we went out for breakfast and as soon as I sat down, I knew from experience I was in trouble. I popped a Tylenol 3 and was able to survive. Sunday was worse than Saturday. Monday worse than Sunday, so I called the Dr. He said give it until Wednesday to see if it persists. Boy did it ever. Running to the bathroom about 10 times a day. Some blood in my stool. EXTREME pain. I wanted to lay down, but I was on the toilet. I called the doctor on Wednesday and was told to go back on 60 mg of Pred. I just got off it on Monday (12/10). I also made an appointment for this Monday. This course of action didn’t seem right to me. It failed the first time, why would it be different a few days later? As I suspected, the doctor was out of the office Thursday and most of Friday, hence the recommendation to go back to the dreaded Pred. I left a few things out. My wife got pregnant in September and miscarried in October. She got pregnant right away and things look really good this time. Except she has been nauseous for months. That’s the good news. Now when it rains, it pours. As if my health issues weren’t enough, I went back on medical leave this week. Things were already looking bad. I went to let my three dogs out last night (they are family members) and one of them wouldn’t get up to go. She didn’t look good, so I layed down beside her. Within a few minutes, she was dead. Out of nowhere. No warning. Every time I say things have to get better, they get worse. My job sucks, too. This brings me to my real question and purpose for writing: does anyone know of a UC specialist that they feel comfortable recommending? I live in Metro-Atlanta, but I will travel. I don’t know if I should look at something like the Mayo Clinic? Temple U? somewhere in New York? I hate New York, but I could get a good hot dog up there! LA? I will try to see another doctor down here early next week, but who better to ask for an opinion than this group? Thanks in advance, sorry about my long-winded story and I hope this makes sense. I have had a really long and emotional week, so I apologize if I jumped around too much. Thank you for your support. T.J.
Response:
I don’t know if I have trouble understanding my doctors or if they just don’t tell me enough or explain it correctly. Either way, I was told yesterday at my appointment that I have Pan-Colitis. It’s everywhere (I guess in my colon). Crohns-Colitis had been mentioned in the past. I have had biopsies done and they are typical of Colitis, but my Doc said he can’t tell for sure. The options presented were essentially as I had anticipated. the first step, however is to get my condition under control. I bumped up to 60mg of pred from 40. If that doesn’t work, I will spend Christmas in the hospital getting IV steroids. At least my holiday already passed, but it would still be miserable. I went up to 60 yesterday and so far no luck. I got up twice last night to run to the bathroom. I almost couldn’t wait for my wife to finish urinating (she’s pregnant so all she does is pee!) the second time. This time my doctor started to push for surgery. He mentioned the increased risk of colon cancer and said after the disease (Pan-Colitis) runs its course for 10 years surgery is extremely highly recommended. He thinks I should consider it in the near future. I have had Colitis for 10 years. Initially it was confined to the left side. He said you have about 20 years in that case. I probably have about 9 years left on the time table he suggests. Obviously surgery is not something to rush into, so I am still looking for specialists for a second opinion or other possible options. My Doc recommended Dr. Dan Present. He was at University of Chicago (they seem to have a real good IBD setup) but Dr. Present is now somewhere in New York. I will need to try to find him. Again, the other options were basicall what I had expected. Imuran, which takes 3 months to kick in and therefore would require another 3 months of Prednisone (assuming Pred works this time) or Remicade which may or may not work and would probably require Prednisone and Imuran. I also have a cold and dearly miss my dog. This has been such a draining and deflating week. At least I still have my health….Oh wait – no I dont… Thanks again for your input. I will pass along information as I get it so hopefully I can help someone else. – Hide quoted text — Show quoted text -Thrashers First you said you had UC and than you said you didn’t have Crohn’s but might have Crohn’s Colitis. Sometimes there is a question as to whether someone has UC or Crohn’s-Colitis. Crohn’s colitis is Crohn’s disease of the colon or granulomatous colitis – whatever you call it it is Crohn’s. Please get a confirmed diagnosis if you can – from Promethius or by having a biopsy read by an expert in the field of IBD.
Response:
Thrashers First you said you had UC and than you said you didn’t have Crohn’s but might have Crohn’s Colitis. Sometimes there is a question as to whether someone has UC or Crohn’s-Colitis. Crohn’s colitis is Crohn’s disease of the colon or granulomatous colitis – whatever you call it it is Crohn’s. Please get a confirmed diagnosis if you can – from Promethius or by having a biopsy read by an expert in the field of IBD. — Pearl L
– Hide quoted text — Show quoted text – Thank you, Apu. Yes, that is the information I am seeking. For the most part I do have my diagnosis. I do not have CD, but I might have Crohns-Colitis. I am looking for help getting my disease back into remission and maintaining it (for as long as possible). I appreciate your suggestions and will look into these facilities. I am about to leave for my doctor’s appointment. We’ll see what he says this time. I will also ask him for his suggestions for a specialist. TJ BTW – Who is this Paul fellow that people keep welcoming in this thread?!? Not trying to be rude, but does University of Miami have an excellent set up for treatment? I believe Thrashers has his diagnosis, he wanted suggestions for therapy (which I have nothing to offer). If you really want to travel University of Miami, Sylvester Cancer Center has a great diagnostic set up for IBD. They are in Miami Florida. UM MOM Susan TJ I have heard of numerous people with UC/CD that swears by Shands University Hospital in Gainesville Florida (about a 6.5 hour drive from Atlanta) and also a couple of friends who swear by the Mayo Clinic in Jacksonville Florida Peace and Love Maryjo
Response:
I know from information I have read that it is difficult to diagnose Crohn’s colitis and it is often mistaken for plain old colitis but how different are the treatments? Also being one who believes that there are natural remedies that can help I feel that those things can help no matter what the actual problem is. Although it would be best to get the official dx. Regards, Jeff – Hide quoted text — Show quoted text – Thrashers First you said you had UC and than you said you didn’t have Crohn’s but might have Crohn’s Colitis. Sometimes there is a question as to whether someone has UC or Crohn’s-Colitis. Crohn’s colitis is Crohn’s disease of the colon or granulomatous colitis – whatever you call it it is Crohn’s. Please get a confirmed diagnosis if you can – from Promethius or by having a biopsy read by an expert in the field of IBD. — Pearl L Thank you, Apu. Yes, that is the information I am seeking. For the most part I do have my diagnosis. I do not have CD, but I might have Crohns-Colitis. I am looking for help getting my disease back into remission and maintaining it (for as long as possible). I appreciate your suggestions and will look into these facilities. I am about to leave for my doctor’s appointment. We’ll see what he says this time. I will also ask him for his suggestions for a specialist. TJ BTW – Who is this Paul fellow that people keep welcoming in this thread?!? Not trying to be rude, but does University of Miami have an excellent set up for treatment? I believe Thrashers has his diagnosis, he wanted suggestions for therapy (which I have nothing to offer). If you really want to travel University of Miami, Sylvester Cancer Center has a great diagnostic set up for IBD. They are in Miami Florida. UM MOM Susan TJ I have heard of numerous people with UC/CD that swears by Shands University Hospital in Gainesville Florida (about a 6.5 hour drive from Atlanta) and also a couple of friends who swear by the Mayo Clinic in Jacksonville Florida Peace and Love Maryjo
Response:
Thank you, Apu. Yes, that is the information I am seeking. For the most part I do have my diagnosis. I do not have CD, but I might have Crohns-Colitis. I am looking for help getting my disease back into remission and maintaining it (for as long as possible). I appreciate your suggestions and will look into these facilities. I am about to leave for my doctor’s appointment. We’ll see what he says this time. I will also ask him for his suggestions for a specialist. TJ BTW – Who is this Paul fellow that people keep welcoming in this thread?!? – Hide quoted text — Show quoted text – Not trying to be rude, but does University of Miami have an excellent set up for treatment? I believe Thrashers has his diagnosis, he wanted suggestions for therapy (which I have nothing to offer). If you really want to travel University of Miami, Sylvester Cancer Center has a great diagnostic set up for IBD. They are in Miami Florida. UM MOM Susan TJ I have heard of numerous people with UC/CD that swears by Shands University Hospital in Gainesville Florida (about a 6.5 hour drive from Atlanta) and also a couple of friends who swear by the Mayo Clinic in Jacksonville Florida Peace and Love Maryjo
Response:
Glad someone came out and said that Jeff2,I completly agree with the lifestyle and eating habits part. My GI docs have all said I could eat whatever I can, which I think is bad advice. My diet has changed 180 degrees which has helped me very much (no trans-fats,much less sugar,whole foods,etc). Correct me if I’m wrong but it seems mainstream medicines only approach (btw I have UC not CD) is Asacol,Steroids,Surgery which I couldn’t accept. I have been doing well on a combo of real food (I buy & prepare everything I eat),a good probiotic, and accupuncture. You have to explore options outside of the mainstream which has helped many, and I know has helped me. – Hide quoted text — Show quoted text – Funny how the doctors only talk about the options that they know about and not the ones that really help. The American Medical Society is so blinded by their own process that they fail to acknowledge any of the alternative approaches which have proven beyond a doubt to help many people. There are many things you can do and need to know about contributing factors with UC. I have UC and have been able to control it by learning what types of foods are bad for me. Also antibiotics and probiotics have been proven to be useful. A good quality antioxidant can do more to help then the drugs that the medical profession will sell you. You can ignore this information but doing so will probably lead to the ultimate medical cure – surgical removal of your entire colon. There are others in this ng who can help provide the information you need to develope a healthier lifestyle and put your body on the road to recovery. In some ways IBD is a degenerative disease and it has a progression and also a regression. Find out what you can do to regress the symptoms. It’s not that hard. Just start by figuring out what you do that causes the progression of the disease and then reverse the process. Along with that there are things you can do or take that can help the healing process. Don’t expect the doctors to have you examine your lifestyle or eating habits. It amazes me that the majority of them don’t think that what you eat has anything to do with your intestinal disease – that would make too much sense. If you want to know more send me an email. If not then I wish you well and good luck. Personally I do not trust my health entirely to the doctors, although I do get their opinions and diagnosis and take some meds, I’m not stupid, I’ll do whatever works but the western paradigm is totally flawed and biased towards profit and not health. ‘Nuf of my rambling, keep reading and researching, you will be amazed that there are people who have totally regressed their disease to a point where it is not even detectable. Good luck and take care. Jeff
Response:
Funny how the doctors only talk about the options that they know about and not the ones that really help. The American Medical Society is so blinded by their own process that they fail to acknowledge any of the alternative approaches which have proven beyond a doubt to help many people. There are many things you can do and need to know about contributing factors with UC. I have UC and have been able to control it by learning what types of foods are bad for me. Also antibiotics and probiotics have been proven to be useful. A good quality antioxidant can do more to help then the drugs that the medical profession will sell you. You can ignore this information but doing so will probably lead to the ultimate medical cure – surgical removal of your entire colon. There are others in this ng who can help provide the information you need to develope a healthier lifestyle and put your body on the road to recovery. In some ways IBD is a degenerative disease and it has a progression and also a regression. Find out what you can do to regress the symptoms. It’s not that hard. Just start by figuring out what you do that causes the progression of the disease and then reverse the process. Along with that there are things you can do or take that can help the healing process. Don’t expect the doctors to have you examine your lifestyle or eating habits. It amazes me that the majority of them don’t think that what you eat has anything to do with your intestinal disease – that would make too much sense. If you want to know more send me an email. If not then I wish you well and good luck. Personally I do not trust my health entirely to the doctors, although I do get their opinions and diagnosis and take some meds, I’m not stupid, I’ll do whatever works but the western paradigm is totally flawed and biased towards profit and not health. ‘Nuf of my rambling, keep reading and researching, you will be amazed that there are people who have totally regressed their disease to a point where it is not even detectable. Good luck and take care. Jeff – Hide quoted text — Show quoted text – Ted Bayless at Johns Hopkins is good. However, we all know that at some point no one can do anything. That is not a reflection on them, just the disease. It doesn’t seem that you’ve been on the several combinations that several doctors have recommended and patients have tried. Some have been successful some not. We know at some point the best choice is surgery and since you have UC you can have the verious surgical alternatives which are best done when you are young and your sphincter is strong. I would go to a good teahing hospital where there is a tema apporach. Cleveland Clinic, Hopkins, etc. Welcome Paul …… we’re glad you’ve joined in! Hugs, Linda OK – I have been lurking fo rquite some time and feel it is now my turn to participate. I have had UC for about 10 years. I am now 30. I have been having some problems the past 2 years or so. In August, I really took a turn for the worse. I had some trips planned for my 30th and thought I was going to have to cancel. Fortunately (I suppose), my doctor got me on 20 mg of Prednisone. That was about 2 days before I was supposed to drive from Metro-Atlanta to Destin, Florida for a fishing trip for the day, then fly to Hilton Head to meet my wife, son and best friends. The Pred kicked in enough to enable me to go. Within 3-4 days, I was having problems again (running to the bathroom). My doctor told me to go up to 40 mg of Pred. Same thing happened, I was ok for a little while, then I went up to 60 mg of Pred (I really hate that stuff). I had also decided I needed to go on medical leave from work. I was out for about 6 weeks. Anyway, my doctor discussed my options with me: 1) try to step down off the Prednisone (it probably doesn’t deserve the respect of being capitalized). We both assumed this wouldn’t work because I had so much trouble getting into remission. 2) Imuran. He said this is a great drug, except for young people. He would not want my wife and I to get pregnant for 6 months after getting off that drug. That would mean 2 1/2 years! We had been trying to get pregnant at the time, too. This was not a viable option. 3) Remicade. This is unproven in UC and I think only has a "fair" success rate in CD. 4) Surgery. Not an option at this time 5) Get a second opinion. I went with option 1 as it was the safest. It seemed to be going ok. I would have about 1 bad day every week or 2 with some bad pains. I was going down by 5 mg every 5 days. Last Friday morning, I was having those pains. I hoped it would go away again. It didn’t. Saturday we went out for breakfast and as soon as I sat down, I knew from experience I was in trouble. I popped a Tylenol 3 and was able to survive. Sunday was worse than Saturday. Monday worse than Sunday, so I called the Dr. He said give it until Wednesday to see if it persists. Boy did it ever. Running to the bathroom about 10 times a day. Some blood in my stool. EXTREME pain. I wanted to lay down, but I was on the toilet. I called the doctor on Wednesday and was told to go back on 60 mg of Pred. I just got off it on Monday (12/10). I also made an appointment for this Monday. This course of action didn’t seem right to me. It failed the first time, why would it be different a few days later? As I suspected, the doctor was out of the office Thursday and most of Friday, hence the recommendation to go back to the dreaded Pred. I left a few things out. My wife got pregnant in September and miscarried in October. She got pregnant right away and things look really good this time. Except she has been nauseous for months. That’s the good news. Now when it rains, it pours. As if my health issues weren’t enough, I went back on medical leave this week. Things were already looking bad. I went to let my three dogs out last night (they are family members) and one of them wouldn’t get up to go. She didn’t look good, so I layed down beside her. Within a few minutes, she was dead. Out of nowhere. No warning. Every time I say things have to get better, they get worse. My job sucks, too. This brings me to my real question and purpose for writing: does anyone know of a UC specialist that they feel comfortable recommending? I live in Metro-Atlanta, but I will travel. I don’t know if I should look at something like the Mayo Clinic? Temple U? somewhere in New York? I hate New York, but I could get a good hot dog up there! LA? I will try to see another doctor down here early next week, but who better to ask for an opinion than this group? Thanks in advance, sorry about my long-winded story and I hope this makes sense. I have had a really long and emotional week, so I apologize if I jumped around too much. Thank you for your support. T.J.
Response:
Yes it does. It is a learning hospital and they didn’t rush me with surgery. They kept going until I finally got to the point where all of us agreed it was time for surgery. Baptist Hospital is also a good hospital. IUM MOM Susan
– Hide quoted text — Show quoted text – Not trying to be rude, but does University of Miami have an excellent set up for treatment? I believe Thrashers has his diagnosis, he wanted suggestions for therapy (which I have nothing to offer). If you really want to travel University of Miami, Sylvester Cancer Center has a great diagnostic set up for IBD. They are in Miami Florida. UM MOM Susan TJ I have heard of numerous people with UC/CD that swears by Shands University Hospital in Gainesville Florida (about a 6.5 hour drive from Atlanta) and also a couple of friends who swear by the Mayo Clinic in Jacksonville Florida Peace and Love Maryjo
Response:
Welcome Paul. Glad you came out of lurking mode. : ) — Take Care, Sherry :o)
OK – I have been lurking fo rquite some time and feel it is now my turn to participate. I have had UC for about 10 years. I am now 30. I have been having some problems the past 2 years or so. In August, I really took a turn for the worse. I had some trips planned for my 30th and thought I was going to have to cancel. Fortunately (I suppose), my doctor got me on 20 mg of Prednisone. That was about 2 days before I was supposed to drive from Metro-Atlanta to Destin, Florida for a fishing trip for the day, then fly to Hilton Head to meet my wife, son and best friends. The Pred kicked in enough to enable me to go. Within 3-4 days, I was having problems again (running to the bathroom). My doctor told me to go up to 40 mg of Pred. Same thing happened, I was ok for a little while, then I went up to 60 mg of Pred (I really hate that stuff). I had also decided I needed to go on medical leave from work. I was out for about 6 weeks. Anyway, my doctor discussed my options with me: 1) try to step down off the Prednisone (it probably doesn’t deserve the respect of being capitalized). We both assumed this wouldn’t work because I had so much trouble getting into remission. 2) Imuran. He said this is a great drug, except for young people. He would not want my wife and I to get pregnant for 6 months after getting off that drug. That would mean 2 1/2 years! We had been trying to get pregnant at the time, too. This was not a viable option. 3) Remicade. This is unproven in UC and I think only has a "fair" success rate in CD. 4) Surgery. Not an option at this time 5) Get a second opinion. I went with option 1 as it was the safest. It seemed to be going ok. I would have about 1 bad day every week or 2 with some bad pains. I was going down by 5 mg every 5 days. Last Friday morning, I was having those pains. I hoped it would go away again. It didn’t. Saturday we went out for breakfast and as soon as I sat down, I knew from experience I was in trouble. I popped a Tylenol 3 and was able to survive. Sunday was worse than Saturday. Monday worse than Sunday, so I called the Dr. He said give it until Wednesday to see if it persists. Boy did it ever. Running to the bathroom about 10 times a day. Some blood in my stool. EXTREME pain. I wanted to lay down, but I was on the toilet. I called the doctor on Wednesday and was told to go back on 60 mg of Pred. I just got off it on Monday (12/10). I also made an appointment for this Monday. This course of action didn’t seem right to me. It failed the first time, why would it be different a few days later? As I suspected, the doctor was out of the office Thursday and most of Friday, hence the recommendation to go back to the dreaded Pred. I left a few things out. My wife got pregnant in September and miscarried in October. She got pregnant right away and things look really good this time. Except she has been nauseous for months. That’s the good news. Now when it rains, it pours. As if my health issues weren’t enough, I went back on medical leave this week. Things were already looking bad. I went to let my three dogs out last night (they are family members) and one of them wouldn’t get up to go. She didn’t look good, so I layed down beside her. Within a few minutes, she was dead. Out of nowhere. No warning. Every time I say things have to get better, they get worse. My job sucks, too. This brings me to my real question and purpose for writing: does anyone know of a UC specialist that they feel comfortable recommending? I live in Metro-Atlanta, but I will travel. I don’t know if I should look at something like the Mayo Clinic? Temple U? somewhere in New York? I hate New York, but I could get a good hot dog up there! LA? I will try to see another doctor down here early next week, but who better to ask for an opinion than this group? Thanks in advance, sorry about my long-winded story and I hope this makes sense. I have had a really long and emotional week, so I apologize if I jumped around too much. Thank you for your support. T.J.
Response:
Ted Bayless at Johns Hopkins is good. However, we all know that at some point no one can do anything. That is not a reflection on them, just the disease. It doesn’t seem that you’ve been on the several combinations that several doctors have recommended and patients have tried. Some have been successful some not. We know at some point the best choice is surgery and since you have UC you can have the verious surgical alternatives which are best done when you are young and your sphincter is strong. I would go to a good teahing hospital where there is a tema apporach. Cleveland Clinic, Hopkins, etc.
– Hide quoted text — Show quoted text – Welcome Paul …… we’re glad you’ve joined in! Hugs, Linda OK – I have been lurking fo rquite some time and feel it is now my turn to participate. I have had UC for about 10 years. I am now 30. I have been having some problems the past 2 years or so. In August, I really took a turn for the worse. I had some trips planned for my 30th and thought I was going to have to cancel. Fortunately (I suppose), my doctor got me on 20 mg of Prednisone. That was about 2 days before I was supposed to drive from Metro-Atlanta to Destin, Florida for a fishing trip for the day, then fly to Hilton Head to meet my wife, son and best friends. The Pred kicked in enough to enable me to go. Within 3-4 days, I was having problems again (running to the bathroom). My doctor told me to go up to 40 mg of Pred. Same thing happened, I was ok for a little while, then I went up to 60 mg of Pred (I really hate that stuff). I had also decided I needed to go on medical leave from work. I was out for about 6 weeks. Anyway, my doctor discussed my options with me: 1) try to step down off the Prednisone (it probably doesn’t deserve the respect of being capitalized). We both assumed this wouldn’t work because I had so much trouble getting into remission. 2) Imuran. He said this is a great drug, except for young people. He would not want my wife and I to get pregnant for 6 months after getting off that drug. That would mean 2 1/2 years! We had been trying to get pregnant at the time, too. This was not a viable option. 3) Remicade. This is unproven in UC and I think only has a "fair" success rate in CD. 4) Surgery. Not an option at this time 5) Get a second opinion. I went with option 1 as it was the safest. It seemed to be going ok. I would have about 1 bad day every week or 2 with some bad pains. I was going down by 5 mg every 5 days. Last Friday morning, I was having those pains. I hoped it would go away again. It didn’t. Saturday we went out for breakfast and as soon as I sat down, I knew from experience I was in trouble. I popped a Tylenol 3 and was able to survive. Sunday was worse than Saturday. Monday worse than Sunday, so I called the Dr. He said give it until Wednesday to see if it persists. Boy did it ever. Running to the bathroom about 10 times a day. Some blood in my stool. EXTREME pain. I wanted to lay down, but I was on the toilet. I called the doctor on Wednesday and was told to go back on 60 mg of Pred. I just got off it on Monday (12/10). I also made an appointment for this Monday. This course of action didn’t seem right to me. It failed the first time, why would it be different a few days later? As I suspected, the doctor was out of the office Thursday and most of Friday, hence the recommendation to go back to the dreaded Pred. I left a few things out. My wife got pregnant in September and miscarried in October. She got pregnant right away and things look really good this time. Except she has been nauseous for months. That’s the good news. Now when it rains, it pours. As if my health issues weren’t enough, I went back on medical leave this week. Things were already looking bad. I went to let my three dogs out last night (they are family members) and one of them wouldn’t get up to go. She didn’t look good, so I layed down beside her. Within a few minutes, she was dead. Out of nowhere. No warning. Every time I say things have to get better, they get worse. My job sucks, too. This brings me to my real question and purpose for writing: does anyone know of a UC specialist that they feel comfortable recommending? I live in Metro-Atlanta, but I will travel. I don’t know if I should look at something like the Mayo Clinic? Temple U? somewhere in New York? I hate New York, but I could get a good hot dog up there! LA? I will try to see another doctor down here early next week, but who better to ask for an opinion than this group? Thanks in advance, sorry about my long-winded story and I hope this makes sense. I have had a really long and emotional week, so I apologize if I jumped around too much. Thank you for your support. T.J.
Response:
Not trying to be rude, but does University of Miami have an excellent set up for treatment? I believe Thrashers has his diagnosis, he wanted suggestions for therapy (which I have nothing to offer). – Hide quoted text — Show quoted text – If you really want to travel University of Miami, Sylvester Cancer Center has a great diagnostic set up for IBD. They are in Miami Florida. UM MOM Susan TJ I have heard of numerous people with UC/CD that swears by Shands University Hospital in Gainesville Florida (about a 6.5 hour drive from Atlanta) and also a couple of friends who swear by the Mayo Clinic in Jacksonville Florida Peace and Love Maryjo
Response:
Welcome Paul …… we’re glad you’ve joined in! Hugs, Linda
– Hide quoted text — Show quoted text – OK – I have been lurking fo rquite some time and feel it is now my turn to participate. I have had UC for about 10 years. I am now 30. I have been having some problems the past 2 years or so. In August, I really took a turn for the worse. I had some trips planned for my 30th and thought I was going to have to cancel. Fortunately (I suppose), my doctor got me on 20 mg of Prednisone. That was about 2 days before I was supposed to drive from Metro-Atlanta to Destin, Florida for a fishing trip for the day, then fly to Hilton Head to meet my wife, son and best friends. The Pred kicked in enough to enable me to go. Within 3-4 days, I was having problems again (running to the bathroom). My doctor told me to go up to 40 mg of Pred. Same thing happened, I was ok for a little while, then I went up to 60 mg of Pred (I really hate that stuff). I had also decided I needed to go on medical leave from work. I was out for about 6 weeks. Anyway, my doctor discussed my options with me: 1) try to step down off the Prednisone (it probably doesn’t deserve the respect of being capitalized). We both assumed this wouldn’t work because I had so much trouble getting into remission. 2) Imuran. He said this is a great drug, except for young people. He would not want my wife and I to get pregnant for 6 months after getting off that drug. That would mean 2 1/2 years! We had been trying to get pregnant at the time, too. This was not a viable option. 3) Remicade. This is unproven in UC and I think only has a "fair" success rate in CD. 4) Surgery. Not an option at this time 5) Get a second opinion. I went with option 1 as it was the safest. It seemed to be going ok. I would have about 1 bad day every week or 2 with some bad pains. I was going down by 5 mg every 5 days. Last Friday morning, I was having those pains. I hoped it would go away again. It didn’t. Saturday we went out for breakfast and as soon as I sat down, I knew from experience I was in trouble. I popped a Tylenol 3 and was able to survive. Sunday was worse than Saturday. Monday worse than Sunday, so I called the Dr. He said give it until Wednesday to see if it persists. Boy did it ever. Running to the bathroom about 10 times a day. Some blood in my stool. EXTREME pain. I wanted to lay down, but I was on the toilet. I called the doctor on Wednesday and was told to go back on 60 mg of Pred. I just got off it on Monday (12/10). I also made an appointment for this Monday. This course of action didn’t seem right to me. It failed the first time, why would it be different a few days later? As I suspected, the doctor was out of the office Thursday and most of Friday, hence the recommendation to go back to the dreaded Pred. I left a few things out. My wife got pregnant in September and miscarried in October. She got pregnant right away and things look really good this time. Except she has been nauseous for months. That’s the good news. Now when it rains, it pours. As if my health issues weren’t enough, I went back on medical leave this week. Things were already looking bad. I went to let my three dogs out last night (they are family members) and one of them wouldn’t get up to go. She didn’t look good, so I layed down beside her. Within a few minutes, she was dead. Out of nowhere. No warning. Every time I say things have to get better, they get worse. My job sucks, too. This brings me to my real question and purpose for writing: does anyone know of a UC specialist that they feel comfortable recommending? I live in Metro-Atlanta, but I will travel. I don’t know if I should look at something like the Mayo Clinic? Temple U? somewhere in New York? I hate New York, but I could get a good hot dog up there! LA? I will try to see another doctor down here early next week, but who better to ask for an opinion than this group? Thanks in advance, sorry about my long-winded story and I hope this makes sense. I have had a really long and emotional week, so I apologize if I jumped around too much. Thank you for your support. T.J.
Response:
TJ I have heard of numerous people with UC/CD that swears by Shands University Hospital in Gainesville Florida (about a 6.5 hour drive from Atlanta) and also a couple of friends who swear by the Mayo Clinic in Jacksonville Florida Peace and Love Maryjo
Response:
If you really want to travel University of Miami, Sylvester Cancer Center has a great diagnostic set up for IBD. They are in Miami Florida. UM MOM Susan
– Hide quoted text — Show quoted text – TJ I have heard of numerous people with UC/CD that swears by Shands University Hospital in Gainesville Florida (about a 6.5 hour drive from Atlanta) and also a couple of friends who swear by the Mayo Clinic in Jacksonville Florida Peace and Love Maryjo
Response:
Sorry – I forgot to mention that I started on Colazal when I got down to 35 mg of Prednisone. 3 pills 3 times a day. – Hide quoted text — Show quoted text -OK – I have been lurking fo rquite some time and feel it is now my turn to participate. I have had UC for about 10 years. I am now 30. I have been having some problems the past 2 years or so. In August, I really took a turn for the worse. I had some trips planned for my 30th and thought I was going to have to cancel. Fortunately (I suppose), my doctor got me on 20 mg of Prednisone. That was about 2 days before I was supposed to drive from Metro-Atlanta to Destin, Florida for a fishing trip for the day, then fly to Hilton Head to meet my wife, son and best friends. The Pred kicked in enough to enable me to go. Within 3-4 days, I was having problems again (running to the bathroom). My doctor told me to go up to 40 mg of Pred. Same thing happened, I was ok for a little while, then I went up to 60 mg of Pred (I really hate that stuff). I had also decided I needed to go on medical leave from work. I was out for about 6 weeks. Anyway, my doctor discussed my options with me: 1) try to step down off the Prednisone (it probably doesn’t deserve the respect of being capitalized). We both assumed this wouldn’t work because I had so much trouble getting into remission. 2) Imuran. He said this is a great drug, except for young people. He would not want my wife and I to get pregnant for 6 months after getting off that drug. That would mean 2 1/2 years! We had been trying to get pregnant at the time, too. This was not a viable option. 3) Remicade. This is unproven in UC and I think only has a "fair" success rate in CD. 4) Surgery. Not an option at this time 5) Get a second opinion. I went with option 1 as it was the safest. It seemed to be going ok. I would have about 1 bad day every week or 2 with some bad pains. I was going down by 5 mg every 5 days. Last Friday morning, I was having those pains. I hoped it would go away again. It didn’t. Saturday we went out for breakfast and as soon as I sat down, I knew from experience I was in trouble. I popped a Tylenol 3 and was able to survive. Sunday was worse than Saturday. Monday worse than Sunday, so I called the Dr. He said give it until Wednesday to see if it persists. Boy did it ever. Running to the bathroom about 10 times a day. Some blood in my stool. EXTREME pain. I wanted to lay down, but I was on the toilet. I called the doctor on Wednesday and was told to go back on 60 mg of Pred. I just got off it on Monday (12/10). I also made an appointment for this Monday. This course of action didn’t seem right to me. It failed the first time, why would it be different a few days later? As I suspected, the doctor was out of the office Thursday and most of Friday, hence the recommendation to go back to the dreaded Pred. I left a few things out. My wife got pregnant in September and miscarried in October. She got pregnant right away and things look really good this time. Except she has been nauseous for months. That’s the good news. Now when it rains, it pours. As if my health issues weren’t enough, I went back on medical leave this week. Things were already looking bad. I went to let my three dogs out last night (they are family members) and one of them wouldn’t get up to go. She didn’t look good, so I layed down beside her. Within a few minutes, she was dead. Out of nowhere. No warning. Every time I say things have to get better, they get worse. My job sucks, too. This brings me to my real question and purpose for writing: does anyone know of a UC specialist that they feel comfortable recommending? I live in Metro-Atlanta, but I will travel. I don’t know if I should look at something like the Mayo Clinic? Temple U? somewhere in New York? I hate New York, but I could get a good hot dog up there! LA? I will try to see another doctor down here early next week, but who better to ask for an opinion than this group? Thanks in advance, sorry about my long-winded story and I hope this makes sense. I have had a really long and emotional week, so I apologize if I jumped around too much. Thank you for your support. T.J.
Response:
OK – I have been lurking fo rquite some time and feel it is now my turn to participate. I have had UC for about 10 years. I am now 30. I have been having some problems the past 2 years or so. In August, I really took a turn for the worse. I had some trips planned for my 30th and thought I was going to have to cancel. Fortunately (I suppose), my doctor got me on 20 mg of Prednisone. That was about 2 days before I was supposed to drive from Metro-Atlanta to Destin, Florida for a fishing trip for the day, then fly to Hilton Head to meet my wife, son and best friends. The Pred kicked in enough to enable me to go. Within 3-4 days, I was having problems again (running to the bathroom). My doctor told me to go up to 40 mg of Pred. Same thing happened, I was ok for a little while, then I went up to 60 mg of Pred (I really hate that stuff). I had also decided I needed to go on medical leave from work. I was out for about 6 weeks. Anyway, my doctor discussed my options with me: 1) try to step down off the Prednisone (it probably doesn’t deserve the respect of being capitalized). We both assumed this wouldn’t work because I had so much trouble getting into remission. 2) Imuran. He said this is a great drug, except for young people. He would not want my wife and I to get pregnant for 6 months after getting off that drug. That would mean 2 1/2 years! We had been trying to get pregnant at the time, too. This was not a viable option. 3) Remicade. This is unproven in UC and I think only has a "fair" success rate in CD. 4) Surgery. Not an option at this time 5) Get a second opinion. I went with option 1 as it was the safest. It seemed to be going ok. I would have about 1 bad day every week or 2 with some bad pains. I was going down by 5 mg every 5 days. Last Friday morning, I was having those pains. I hoped it would go away again. It didn’t. Saturday we went out for breakfast and as soon as I sat down, I knew from experience I was in trouble. I popped a Tylenol 3 and was able to survive. Sunday was worse than Saturday. Monday worse than Sunday, so I called the Dr. He said give it until Wednesday to see if it persists. Boy did it ever. Running to the bathroom about 10 times a day. Some blood in my stool. EXTREME pain. I wanted to lay down, but I was on the toilet. I called the doctor on Wednesday and was told to go back on 60 mg of Pred. I just got off it on Monday (12/10). I also made an appointment for this Monday. This course of action didn’t seem right to me. It failed the first time, why would it be different a few days later? As I suspected, the doctor was out of the office Thursday and most of Friday, hence the recommendation to go back to the dreaded Pred. I left a few things out. My wife got pregnant in September and miscarried in October. She got pregnant right away and things look really good this time. Except she has been nauseous for months. That’s the good news. Now when it rains, it pours. As if my health issues weren’t enough, I went back on medical leave this week. Things were already looking bad. I went to let my three dogs out last night (they are family members) and one of them wouldn’t get up to go. She didn’t look good, so I layed down beside her. Within a few minutes, she was dead. Out of nowhere. No warning. Every time I say things have to get better, they get worse. My job sucks, too. This brings me to my real question and purpose for writing: does anyone know of a UC specialist that they feel comfortable recommending? I live in Metro-Atlanta, but I will travel. I don’t know if I should look at something like the Mayo Clinic? Temple U? somewhere in New York? I hate New York, but I could get a good hot dog up there! LA? I will try to see another doctor down here early next week, but who better to ask for an opinion than this group? Thanks in advance, sorry about my long-winded story and I hope this makes sense. I have had a really long and emotional week, so I apologize if I jumped around too much. Thank you for your support. T.J.
Response:
Categories: Colitis Crohn | 
No Comments »
Noella About Arthritis, it’s clear to me that drugs are causing it… and since they must use similar product for all known imm. sys. disease, you get common side effects. I can say that because I stay on the natural path and no arthristis or whatever weird symptoms at all. Yeah I think that diseases related immune system problems could be solved by the same treatment…at least for what they call Colitis/Crohn Dom I have a good friend who has M.S. He and I were discussing the similarities in our diseases and how many auto immunes seem to be similar. Does anyone know of treatments that are similarly successful in each of these diseases? I have many times heard the references to Arthritis for people who have Crohn’s, but are Crohn’s patients more likely to get M.S. or vice versa? I would like to hear a response from Ken W. on this in particular as non drug approaches tend to be more open minded and therefore tend to fall upon similarities more, it seems. Jason