Well, after a c-scope last week my daughter still has active UC--after 2 doses of Remicade 4 weeks apart--had been going about 6 weeks prior. A bit discouraging, but now a reason for the pain. Had levels tested a month or so ago, and they looked good, so maybe a mild flare? She was perfect for about 4 months, and recently has had lots of pain and we were hopeful that amitriptyline would help because of perhaps a hypersensitivity. The scope showed mild active disease on the left side, and prior to Remicade 8 months ago was moderate/severe pancolitis, so the Remi is working. Because she has already failed so many medications, the latest amitriptyline due to scary side effects, her GI said about all we have left are steroid enemas. Sounds like a good plan, with the left-sided inflammation, right?? Try explaining that to a teenage girl!!!! UGH!!! We have only done it 2 nights, and the second was worse than the first! She gets so worked up she can't relax. Anyone have any tips to pass along? WAIT! That didn't sound good, did it?? No pun intended! The good news is that today was the first time in quite a while she had no pain! Can one dose work that well? I really think this could be the answer if only it could be easier!!
On a good note, the biopsies from the right and transverse colon showed NORMAL mucosa!! Not "inactive chronic colitis" as it was pre-Remicade.
Don't worry about TMI--any advice would be appreciated!!
Kelsie--mom of teen with UC, currently Remicade and 2 doses of Cortifoam! Previously: Asacol, prednisone, imuran, bentyl, amitriptyline.