I probably did have pouchitis longer than I cared to admit. It's hard to say. I haven't felt "well" in a year, but nothing that has kept me from living.
I had the abscess start in December, and I'd probably been straining more than I thought over the few months prior. Most likely pouchitis, but again, nothing crazy. Nothing that in my head made me think things were completely out of hand.
I've always had a high pain tolerance. Even with my UC. My surgeon said my colon was so diseased when he removed it, that it was even kinda friable, but I had no pain, just mild cramping and gas with it all. I think I'm the same way with my pouch. I think I just got used to being a bit crampy and gassy and just pegged it always to indiscriminate eating habits. I've pretty much eaten anything and everything I've wanted over the years (though I cannot eat Portobello mushrooms, and quinoa recently almost killed me! well, blocked the exit 'til I could blow it out of there).
When this all happened in December (found the bump that was an abscess that led to a fistula - a common fistula, not through my pouch, just a low one), I was finally scoped in January. They didn't see much, just random apthous ulcers through my pouch and slightly above it. The CRS I saw at that time put me on a month of Cipro (I'm allergic to Flagyl) and things were pretty quiet, the gassiness stopped. I'd had a week of Cipro in December when it all happened, and it, too, had stopped the gas.
Flash forward to seeing my old CRS who did my seton placement on 3/27. He scoped me during my EUA and said my pouch looked great. He did give me another week of Cipro, though, not for pouchitis, but for the seton placement as a precaution.
I felt pretty great by 4/4, but starting on 4/5, things just started getting harder and harder to pass stool and/or gas. My CRS was out of the office the week of 4/8, but got in with him 4/15, and he couldn't pass his finger through my anastamosis. He thinks all of these 4 months + the last EUA might have caused enough inflammation to cause me to stricture, but no one will be able to say 100%. He again scoped me... says my pouch still looks great, that the anastamosis site only had a wee bit of inflammation, nothing bad, no ulcers. He dilated me... and I now see him again next Monday, 4/22.
I'm on no meds at the moment. I feel pretty alright, except for the anal pain when using the bathroom, and it's only on the left side of my canal (likely because he stayed away from the right side since that is where my seton and fistula are located). It's better today. I've not reached for any pain meds so far.
Does that answer your question? I *do* notice that Cipro seems to knock down my gassiness, but it also SLOOOOWS me down and thickens things for me, to where I'm not as comfortable passing stool. I'm 100% continent, have been for years and years, and don't have accidents. I've never needed immodium or anything like that, even after my takedown, and fiber just binds me WAAAY too much, so I steer clear of Metamucil, etc. I like things to be sort of in that mushy place... not liquid, but not toothpaste thick. And I've been good so far.
I do notice the longer I live with my pouch the more weird things she throws at me. I was literally someone who barely thought about their GI tract for 20 years, and now I'm like, "Hm. Nope. No more corn for me!" Perhaps I was narrowing over time an also didn't realize it... and maybe the narrowing caused me to then not empty well, and caused the pouchitis, which maybe then caused the abscess... and so on and so forth.
It's a chicken/egg thing with me, I think. I doubt we'll know the why of it all, I just hope we figure out how to fix everything and I can just get back to my form of normalcy!
