Hey all,
I'm over seven months out from takedown and have never had an acceptable quality of life since. I'm dealing with 15 BM's daily, incontinence, and pouch pains. Pouchoscopy indicated pouchitis, albeit the GI said that "it looks mild."
I have failed antibiotic therapy (three different abx). My GI says that I can try antibiotic rectal suppositories and rectal steroids but there is a low chance of success. He says the next step would be systemic immunosuppressants (AZA, biologics, pred, etc.).
I had surgery because I was told that my quality of life would be excellent and that I would not have to take any of the harsh drugs I had experienced before. I am refusing the immunosuppressive IBD drugs thus far and do not know what to do. The present situation makes the promises about the jpouch seem like a joke.
My loop ileo gave me an excellent quality of life. I think about asking my surgeon for pouch removal, which he has said is an option. Obviously pouch removal is an ordeal I want to avoid and the potential complications are concerning; that said, sometimes it seems like the only reasonable way to get my life back. I wish that there were a way to get the results I was promised for the pouch without these harsh drugs. I have tried VSL, paleo dieting, and a few other natural approaches. For now I am just dealing with the pain because its easier than considering any of these terrible options.
I know there are no magic solutions, but I wanted to share my situation with people who understand, if nothing else.
