So I'll try to keep this relatively short. I had my takedown in April 2013. I'd had a scope in July showing inflammation primarily in the cuff and started on Buedesonide again, with Flagyl as needed. (Also Lomotil, Fiber, Librax) By October, I was ready to have a full time ostomy. I was going about 30 times a day, incontinent, and in lots of pain. Couldn't leave the house, etc. Both CRS and GI thought it would be worth trying Humira. And it did help. Brought things down to about 15-20 times. And even got a little better with time. But now it's starting to be more like 15-30 somedays, really acidic, still some incontinence and pretty much still house bound. I'm also on either flagyl or vancomycin every day. Which help, but I tend to get anxiety when I take a lot of antibiotics.
I have a scope on Monday, but my GI and I expect to see more pouchitis, cuffitis. He thinks we ought to try switching to Cimzia. But I am wondering if I should look further into pouch advancement or possibly make a trip to Mayo or Cleveland Clinic?
On the med side, I'm open to trying something new, but would prefer not to stay on 3 immune suppressing drugs (buedesonide, flagyl, Cimzia). I haven't been able to quit the beudesonide or flagyl previously and have tried many many probiotics which only seem to make things worse. But lately I am just exhausted and I worry some of that may be all the medication.
I'm not opposed to an ostomy either. My only concern is trading one set of problems for another. A gal I know had her pouch removed, and a permanant ostomy but still has problems with fistulas. When I had my temp ostomies I struggled a lot with skin irritation so that is a concern for me as well.
I know it still depends on the scope results Monday, but I want to have a better idea of what my options are and the direction I want to go so I am just interested in hearing any feedback at all. As someone else on here wrote once "I'm living a pouch-centered life." And I am desperate to have a little more in my life going forward!
Thanks!
I have a scope on Monday, but my GI and I expect to see more pouchitis, cuffitis. He thinks we ought to try switching to Cimzia. But I am wondering if I should look further into pouch advancement or possibly make a trip to Mayo or Cleveland Clinic?
On the med side, I'm open to trying something new, but would prefer not to stay on 3 immune suppressing drugs (buedesonide, flagyl, Cimzia). I haven't been able to quit the beudesonide or flagyl previously and have tried many many probiotics which only seem to make things worse. But lately I am just exhausted and I worry some of that may be all the medication.
I'm not opposed to an ostomy either. My only concern is trading one set of problems for another. A gal I know had her pouch removed, and a permanant ostomy but still has problems with fistulas. When I had my temp ostomies I struggled a lot with skin irritation so that is a concern for me as well.
I know it still depends on the scope results Monday, but I want to have a better idea of what my options are and the direction I want to go so I am just interested in hearing any feedback at all. As someone else on here wrote once "I'm living a pouch-centered life." And I am desperate to have a little more in my life going forward!
Thanks!
