Greetings everyone!
Just here to give a little background on my situation, and see if there's anyone with my specific line of treatments and following failures =(
So I was in high school over 3 years age (18 then, currently 21) when I started having D as well as blood. I also had cramping and bloating in the lower abs and many bathroom trips. Originally they thought it was a bug or antibiotic colitis, but regardless it was finally nailed down as ulcerative proctitis. Doc started me on Lialda which seemed to hold it off, but several months later it was clear that it had broken through and spread to the remainder of the colon.
At this point we started 6 mercapto purine, which has a loading period, so that was the first time I took prednisone to hold me over until the 6mp started working. The 6MP continued to work for about 18 months, but again, the colitis had broken through that as well, and it was clear the conventional pills were not working.
This was about a year ago. I was constantly going on and off prednisone to control the flares, eventually I started remicade. About last october I had a flare up, and spent 2 weeks in the hospital since I also got c difficile, eventually i weened back off the predisone and the remicade seemed to be working from this jan until may.
It is clear that it is no longer working, and I am on remicade in the interim while I await an appointment with university medical people since my doctor said he isn't sure what we should do at this point.
So in general, my case is very severe you could say, considering if some of the other remicade like medications don't work, I'm looking at colon removal.
However, my doctor has never once said anything about my diet, and this worries me, since I have read so much online about diet changes having considerable effects on symptoms. Even on remicade and 20mg predisone daily I still use the bathroom 15+ times a day with all the nasty and uncomfortable symptoms that accompany this disease.
I absolutely hate the prednisone and having been on and off it for 3 years now it is really weighing on me. I cannot stand the bloating face look, uncontrollable sweating and irritability. I personally believe that the mood effects and general shortness and nervousness/anxiety of being on heavy dosages of predisone over this long of time have even gone as far as to augment the downfall of 3 year relationship.
I would like to know if there's anyone else with a severe case as mine that has had any success with non-doctor treatments, meaning diet and supplements.
Hope everyone is having a nice summer so far!
Just here to give a little background on my situation, and see if there's anyone with my specific line of treatments and following failures =(
So I was in high school over 3 years age (18 then, currently 21) when I started having D as well as blood. I also had cramping and bloating in the lower abs and many bathroom trips. Originally they thought it was a bug or antibiotic colitis, but regardless it was finally nailed down as ulcerative proctitis. Doc started me on Lialda which seemed to hold it off, but several months later it was clear that it had broken through and spread to the remainder of the colon.
At this point we started 6 mercapto purine, which has a loading period, so that was the first time I took prednisone to hold me over until the 6mp started working. The 6MP continued to work for about 18 months, but again, the colitis had broken through that as well, and it was clear the conventional pills were not working.
This was about a year ago. I was constantly going on and off prednisone to control the flares, eventually I started remicade. About last october I had a flare up, and spent 2 weeks in the hospital since I also got c difficile, eventually i weened back off the predisone and the remicade seemed to be working from this jan until may.
It is clear that it is no longer working, and I am on remicade in the interim while I await an appointment with university medical people since my doctor said he isn't sure what we should do at this point.
So in general, my case is very severe you could say, considering if some of the other remicade like medications don't work, I'm looking at colon removal.
However, my doctor has never once said anything about my diet, and this worries me, since I have read so much online about diet changes having considerable effects on symptoms. Even on remicade and 20mg predisone daily I still use the bathroom 15+ times a day with all the nasty and uncomfortable symptoms that accompany this disease.
I absolutely hate the prednisone and having been on and off it for 3 years now it is really weighing on me. I cannot stand the bloating face look, uncontrollable sweating and irritability. I personally believe that the mood effects and general shortness and nervousness/anxiety of being on heavy dosages of predisone over this long of time have even gone as far as to augment the downfall of 3 year relationship.
I would like to know if there's anyone else with a severe case as mine that has had any success with non-doctor treatments, meaning diet and supplements.
Hope everyone is having a nice summer so far!
