Paul’s Story Including Battling a Flare for Almost 5 Months with Details on Imuran

I live near Boston, MA and am a male who just turned 60.

Happily married for 32 years with 3 great children:).

I work in high tech and do consider my working life to be pretty stressful, but with age comes wisdom and the ability to keep things in perspective, so I feel I manage the stress pretty well, but i am looking forward to retirement before too much longer.

I was diagnosed later in life, at about age 43 with UC

Something Interesting:

I have been pretty active as an athlete all of my life, a college soccer (I know, football!) player, who also played hockey and baseball back in the days when you didn’t have to concentrate on one sport in school. I was a runner for years, but now enjoy bicycling and yoga as my main training regimen, much easier on the joints. Golf is a hobby, but I am not very good at it, so I don’t take it too seriously. I also love to ski, and reading is a passion for me.

Symptoms Currently:

My UC is a long story, right now I have been battling a flare for almost 5 months which was caused by my trying to stop taking Imuran and stay in remission naturally. I am back on the Imuran and trying to control things with that and my diet, but it’s been frustratingly slow. I am having about 3 bloody diarrhea (mostly) BMs per day, but am able to continue working and exercising. I had shoulder surgery in August, and refused antibiotics due to a bad history with them, and the surgery has gone great, but I was not able to follow my exercise regimen during the recovery for 22 weeks and I think that has not helped my UC.

Paul’s Story:

Mine is a long story, so I will try to summarize as much as possible.

Diagnosed with a mild case of UC about 17 years ago. Was given Asacol enemas and my colitis exploded, landing me in the hospital on high dose prednisone and being fed via central line TCP. I spent a full month in the hospital, they could not stop the bleeding, but I have always been determined to not go the surgery route. We finally decided to feed me while weaning off 80 MG of prednisone and starting 100MG Imuran. This put me in remission within a month. I stayed on the Imuran for about a year, and not liking the side effects was able to return to a normal diet and stop the Imuran after a year.

I stayed in Remission for about 12 years after that!!!

Unfortunately, I was diagnosed with pneumonia about 4 years ago and took a heavy dose of antibiotics to cure it (not the greatest decision of my life) the Z-Pack and it cured the pneumonia, but landed me back in the hospital with UC and what also turned out to be C-Diff.

Vancomycin resolved the C-Diff, but I had to go back on the Imuran as it seemed that the C-Diff flared my UC.

The C-Diff also recurred on me, and I have had 2 fecal transplants which worked wonders for me. I think that was the primary reason i was able to stop flares, not the Imuran.

Since that time I have had flares off and on. I was feeling great on just Imuran, eating well and exercising, so I again tried to get off the Imuran as I am concerned about it’s side effects and as others have mentioned, taking something that suppresses my immune system. I believe that the Imuran causes me to have joint pain, mainly in my knees when i ski or bike. I also believe that having had to take prednisone in high doses was a contributing factor to the reasons why I had to have shoulder surgery this year.

I have been flaring for 5 months. I am pressing my GI doc for another fecal transplant, but it seems that these are only approved to be administered to resolve C-Diff. I would much prefer to have these done by a hospital than doing it myself. I am only taking Imuran right now, and still bleeding more than I would like. My GI says the bleeding is only a sign that inflammation is still there, but none of us like to see 5 months of bleeding! She has asked if I want to try low dose prednisone, I am hoping to NOT do that, but I am now considering trying a short course. I really do think that a transplat is my answer and go back to see her in 2 weeks. I am going to press for the transplant at that time.

Medications / Supplements…the rest of the story:

I’ve tried quite a lot of things. They tell me I have a sulfa allergy, so Asacol is not an option for me.

Imuran and fecal transplants seem to work best for me and I am very hopeful that the transplant research and microbiota research will help all of us in the near future.

I take Florastor to keep the C-Diff away and VSL-3, though I can’t tell you that either have helped a lot, but I also don’t think they hurt.

Prednisone has helped stop flares, but I hate it with a passion due to long term and side effects. I’ve spent a total of 59 days in the hospital on high does Prednisone, plus time on it outside the hospital, so I’d rather not take any more.

I make my own yogurt and I think it helps. I eat a smoothie every morning with my yogurt, strawberries, blueberries, a banana, L-Glutamine, spinach, ginger root and a small amount of fruit juice. I believe it does help my symptoms, and even if it doesn’t it really makes me feel good every day.

I have been reading up on low dose Naltrexone and am interested in what others think about that. I’m also interested in getting the IGG food allergy test and wondering if others think it is helpful, seems to me that it is.

Adam, I can’t thank you enough for putting this site together. I’ve been searching the internet for years and I find this by far the best site out there. Keep up the great work.

As I said, I’ve tried a lot of things. I believe that there are different things that work for different cases, unfortunately, but I am hopeful that I might be able to help anyone out there if I can.

I would also like to echo what others have said, don’t let UC control your life, take control of it and live your life!

written by Paul S

submitted in the colitis venting area