I finally got to see my GI for my follow-up since my colonoscopy, it has also been several months since my last visit. The bad news is that I MAY be developing antiobodies to the Remicade, which may be the cause of my mouth sores and bladder/pelvic pain. The worse news is that he really believes my joint pain is not caused by this, that it is UC Arthritis. He said the areas I have pain are classic UC Arthritis spots exactly. (wrists, hands, knees and ankles). :(
The good news- First off, my 2 week flare-up seems to have subsided, I think! My doctor is very optimistic about the Prograf. My colon is 100% beautiful. My only ulceration is about 1/4 and inch deep still, but is curling? around the edges, a sign it is trying to heal. Since it is 2 inches from my anus, (sorry TMI) rectal meds should help (though I have tried them all over the years with no help!) I am gonna try the Proctofoam HC again. Other sort of good news is that if I can't take the Remicade, I will start Humira. I am not happy about injecting myself, but it does save me the pain of appointments and IVs and finding babysitters. Ironically, I have gotten used to it though and look at it as one of the few chances I have to relax. The Humira should help the arthritis if I have antibodies to the Remicade. So, more meds to take... One more Remicade infusion to "see what happens," oh boy. I am still having trouble accepting the fact that I have arthritis at 27!