Looking for anyone on a biologic specifically used to treat IBD type symptoms of the pouch (not really pouchitis).
My GI wants to try me on Humira at this time.
He's given me the spiel that "older pouch" patients (and I mean pouch age, not patient age - pouches 20-30 years old), are coming to him with similar issues that I'm having, such as developing "new" type of IBD symptoms after having good runs with their pouches through the years. I know gene expression changes are happening to the pouches over time, that might be what is the culprit of all of this stuff. He said that "old" pouches read more colonic when sent to pathology... it's like, IMO, the body is sensing this new "colon" and deciding to attack it in some way, shape or form (though I'm no researcher/GI doc; it just sounds plausible.)
Story is, 2012, I started to feel "off," couldn't explain it, but kept saying to my hubby, "I don't feel like I used to in a GI sense. I wonder if I have Crohn's disease?" Odd that I said that, you know, but there it was. Sort of vague things, but GI system was "off." I kept wondering, but limping along.
12/12/12 found a perianal "bump." Long story short, it was an abscess that turned to a perianal fistula.
Got a seton placed in spring of 2013; have had it ever since. Strictured/narrowed at the exit there a few times and have suffered the indignity of multiple dilations. Never had that problem before.
Have con't to feel "off" through 2013-2014: low grade fevers, fatigue, bloating... then developed soreness in the anal canal on the opposite side, tenesmus (the feeling you can't get off the toilet; you're not empty), a "swollen" feeling right at the exit. Just never feeling "good," if you know what I mean. Developed a + C-reactive protein, too.
I tried diet changes, FODMAP, and currently am on Align, the probiotic. I do think the Align is helping a bit with the bloating, etc. We tried Canasa suppositories, but they seemed to make things worse down there, so GI had me stop them.
Upper and lower scopes were done, and of course, I was in the gray area (is it IBD? is it something else?)
I don't have pouchitis symptoms; au contraire. Usually my issue, if I'm having one, is that the stool is too thick. I sometimes have to take a magnesium to loosen things up, I've even had to end up grabbing an enema here and there. It's not constantly a problem, but it can be. I go to the bathroom 4-7 times a day, on average. My consistency is *normally* my normal, but again, sometimes too thick for my liking (I prefer a looser stool; I'm continent whether it's loose or not).
My biopsies did show some low-level pouchitis; we've tried me on Cipro a few times (unfortunately I'm allergic to Flagyl), but mostly it's for increased bleeding and discharge from the fistula, not so much for pouchitis symptoms (though I told the GI I think I may have had "simmering" pouchitis type symptoms, and I just got used to them? I don't know, but I have a pretty high pain and discomfort tolerance overall, for all kinds of things, pouchitis likely included.)
So, just looking for some souls who have been to this point to talk with/hear stories from. Thanks for any advice, etc. that you have. Or also, anyone who's researched or knows anything about this kind of situation.
Thanks bunches.
