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Diagnosed with pouchitis in 2006 and have made my way through the usual tx of Flagyl, Cipro, Endocort, Hydrocort...now on Augmentin (love it until it starts to make me feel nauseous). Last year I started Remicaid and then after 9 months of feeling great had a reaction (severe abdominal pain during infusion and blood test showed antibodies.) Am now ready to try Humira however, my insurance is denying the Humira for the dx of pouchitis. They did this for the Remicaid but once my provider appealed it they approved. My fingers are crossed that the same will happen for the Humira. I'm curious if others have had this experience and/if their insurance paid with no problem. My doctor keeps telling me (he is at Georgetown University Hospital) that I'm the only patient he has with pouchitis who is being treated with anti-tnf's. I'm considering second opinion at Cleveland Clinic but this is too far for me to go to on a regular basis. Are there any other drugs or lifestyle changes anyone has found to initiate and prolong remission?
fwiw, about ten years ago, the frequency of pouchitis increased to every 3 months for me vs about every 18 months, so my new doc (had just relocated to SF) amended my dx to crohns and wanted me to start Remicade. I punted because ten years ago I didn't have as much familiarity with biologics (nor did the world) as we do now. that year arguably was a bad call, I have since developed strictures - one mid pouch and another above the pouch which arguably might have not happened had I just started biologic therapy, but who knows. if you search the pouchitis forum there are a variety of lengthy medical papers on pouchitis, ive read them recently and they are instructive. it does seem that chronic pouchitis can also be treated with anti-TNF's with success. i would argue that biologic therapy has been much better than the year i tried with rotating antibiotic therapy. as to other changes who knows, some people swear by using probiotics but i never found them to do much for me. good luck.
I was on Humira for psoriatic arthritis. While I was on it my pouchitis completely disappeared. Unfortunately my arthritis did not respond as well so the doctors took me off of it.
