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Reply to "How did you decide it was time for surgery?"

@Sara14 posted:

I've tried the enemas twice a day a few times over the years. I guess I could try that once more, idk. I don't think it covers all the affected area though. My scope in November has inflammation in the rectum, then a skipped patch and then more in the sigmoid... That made me think Crohn's but my GI said it was probably the enema hitting that part because of the natural folds of my colon or something. I used to be able to taper them down for maintenance and up them to nightly for flares, but I've been on them nightly for many years now, with symptoms returning if I missed more than a night or 2 here or there.

I've not been able to get off either pred or Uceris for over 2 years now. I felt more comfortable being on Uceris longer term since most of it is absorbed in the colon, but it is still a steroid and it was giving me some steroid side effects. And if I tried to taper off the Uceris, I would get pretty bad again within a week or 2 and then need a course of pred to get it back under control. Then when done with the pred, I had to go back on Uceris for maintenance...not really a good long-term pattern, lots of steroids...

Yeah, you definitely need the surgery for sure! I would recommend twice a day with Mesalamine enemas until you can get surgery. Please try to get the surgery this year if you can, I would hate for you to get worse. IBD is not good being untreated and left like that, it can eventually lead to colon perforation.

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