Yeah, he thinks all of the issues of late are contributors in what happened.

How long after dilations did it take to feel less sore? Still sore today. But still going, so that's the up side. He's the surgeon who did my main surgery 22 years ago.

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!

Generally I never have anal discomfort. The abscess started with some pain to the right side, and then on 12/12/12 I felt the bump, right on the right side of the anal opening, so it was external. It drained on its own, but I had an I&D in the ED when I was running fevers with it. I think I just fell into that 50% that get a fistula after an abscess (again it's below the anastamosis and does not involve my pouch).

We were pretty sure of the fistula, but he confirmed it with MRI. I kept having the "bump" get sore and then it would burst after BMs, and drain mostly blood, just small amounts. After that he did the draining seton, which I'll have indefinitely at this point. It hardly drains at all, and I don't notice it, but it does make cleaning ever so slightly more annoying than the old days.

You know, I'm not sure of what his method of dilation was under anesthesia. I'll ask and let you know Monday when I see him. I'm NOT looking forward to a digital exam with him! I love him, but man, he's kinda not gentle!

Good luck Rachel. Let me know how you make out.
Sounds like you have gotten a correct diagnosis and now with treatment things should improve. I would be sure to ask your doctor what he thinks caused the abscess and are you prone to them recurring now that you have had one?

Will do. You do the same.

Feeling like things are reverting. I started eating "food" rather than drinking or eating just mush stuff, and I'm not sure about things. Still passing gas when I'm lying down, mostly. Never have been able to do so standing, but can't do it sitting now, which I used to be able to do. Not so much gas on the toilet now. Stool is again kind of thick (why? I have no idea. It all started when I had the seton placed, and I have no idea how that started all of this? though I'm guessing it's narrowing again?)...

I'm so depressed over this. People (who are just trying to be supportive) just keep saying, "It's going to get better!" and "Think positive!" but it's VERY hard to be positive when you've suffered some sort of constant anal pain for four months when you never had issues prior. I've never had issues going to the bathroom, and it's like my body is revolting against me.

I'm sorry I'm venting here, but you guys are the only people to understand, even if your problems aren't always the same ones. No one else in my life has had a J pouch, and because things have always been rosy, they just think it's all going to go back there, and I'm not so sure of that.

I see my doctor on Monday, so I'm hopeful he'll still have some ideas. I think I'm having, not pouchitis, but cuff type issues. I'm hoping he'll try to treat me for inflammation there.

I think it was that last run of Cipro with the seton placement that threw me under the bus.

rachaelraven,
I'm sorry your are going through all of this. When we have these problems I wish they could take us and put us in a nice comfortable hospital like place where they are observing us 24/7 with a nursing staff and see what we are going through. I am convinced they have no concept what we are going through after we leave their offices.

I hope you are feeling better soon.

So my CRS said I did *not* have a stricture, that I was narrowed by inflammation at the anastamosis site. He said I had no issue in the pouch, and the anal area was fine, too.

He also tried to adjust my seton, and it was friable enough that it broke. Maybe all that acidic small bowel stool + straining had something to do with it. He showed me it, and he barely had to pull for it to break. He said it would have broken on its own soon.

No plans to replace it at this time. I'm guessing it will have to be. The external pinhole is putting out extremely scant amounts of mucus. I'm sure it'll start the heal/burst cycle again, soon. But he wants to wait and see.

He DID say I'm still narrow. He did some mild in office dilations, but has me scheduled for another conscious sedation appt on Monday to dilate again.

BUT. As of the past 2 days, I've felt better and been able to go better. It's like my "gas" is back, to propel it all out again. It's not 100%, but better. He said I can cancel at the end of the week if I'm back to my normal...

He put me on Floristor, his choice for me, but didn't prescribe any meds for "down there." Just b/c I need the gas to go, that was why he chose that one, I THINK he said.

He can't explain it, really, just that the fistula and whatnot might have triggered this, but really has no real idea.

Anyone ever have this issue?

I'm annoyed the seton came out, b/c it did help the fistula. Just praying it won't get bad again. I feel like I'm about to start all over here.