I had 3 colonoscopies with 3 different doctors all under 1 year from 2007 to 2008. 2008 is when I got my uc diagnosis. It was mild and I was on lialda but I took myself off cuz I felt better. Now its moderate to severe.
My Ulcerative Colitis Experience:
I go see my nurse practioner tomorrow to discuss going on Imuran. I eventually want to help my ulcerative colitis through diet but I know that I must get into remission and the way to do that is with the meds. I have done the enemas and lialda in the past, which worked great and that got me into remission. But since I took myself off lialda in late 2010 I have gotten worse.
I’m in a flare that just won’t go away.
This flare started around late september/october 2011. I was having enough symptoms to go to the doctor and have another colonoscopy done. He put me on prednisone and mesalamine enemas, also a pill (but I can’t remember the name). Well the prednisone helped for the first week but I swear I feel worse now than I did. Then the doc put me back on lialda and I get to do a colorcort enema and suppository eveynight. Yay. Not! Nothing is helping and I’m now scared. They want me to try imuran and a part of me thinks that I should so that I can maybe go into remission. But the other part of me is scared of the side effects. Like the fact that its an immunosuppresssnt. Your immune system is not supposed to be suppressed. That will just let in all sorts of illnesses. So I am really torn. Any thoughts, ideas, and/or advice would be much appreciated. I never used to be so leary of medicine but I also have psoriasis on my hands and a few years back the dermatologist reccommened Raptiva which I did. It seemed to be working but 2 1/2 months in I received a letter saying the FDA pulled this stuff from the market because some people in Europe died from a fatal brain disease. Well all my faith in medicine went right out the window. I know that going off Raptiva could make my psoriasis worse which it did do. So to go on something that is neccessary is fine I just want to know what the side effects are not only while I’m on the meds but also if I go off of the meds too. I’m so sick and tired of being sick and tired. Also can’t stand the “looks” that the doctors give me. Oh yeah I almost forgot I heard of this powder supplement called Inflammacore that’s designed for people that suffer with uc. Has anyone heard of the stuff or possibly use it? A friend of mine told me I have to go gluten free too.
Is that something I should do? Will it help with uc? Thanks to everyone for helping me in this journey. I’m trying to not let it get me down but sometimes it just gets the best of me.
written by Tracy
submitted in the Colitis Venting Area