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I have had very few bouts of "pouchitis." Even when I *may* have had it, I never could tell, really.

But this feeling I'm having is different. Never had it before.

I feel a lot of rectal/anal type pressure, and I feel incomplete with emptying. But the weird thing is, it's mostly affecting me at night and in the morning. I get that tenesmus feeling, like you can't get off the toilet, because you feel like you're not done. Past two days, the daytime hours were "ok," but today, the feeling has plagued me through the day.

I was finally able to sleep through the night the past two nights, where last week for a few days, I was waking up b/w 1-3am and needing to go in the bathroom 2X back to back to finally be able to go back to sleep. That's unusual for me, to have this urgency feeling.

I was never dx with "true" cuffitis, but recently (a few months ago) was put on Canasa, because my new GI thought **maybe** some rectal cuff inflammation might be contributing to my fistula issue/outlet narrowing. When I had my surgery in 1991, my surgeon did do a mucusectomy of my rectal cuff.

I had slacked off on using the Canasa regularly, because I wasn't seeing much difference, but things were going "good," so I used one the Friday during vacation, 7/18.

By 7/20, I had rectal pain on the left, and was worried that I was developing a new abscess even!! However, that pain went away.

Also, back up to this: I had been on 500mg daily of Cipro for about 4 weeks, r/t fistula issues. The Cipro ended around 7/22; after that, these pressure issues started to happen and get worse.

I've never been one to be plagued by pouchitis, but I'm wondering: could I have developed a sort of "rebound" pouchitis from being ON the Cipro and then off?

I have no changes in my stool type, it's not diarrhea or more loose or bloody or anything like that. In fact, this past one was semi-formed (as a J pouch stool can be; you know, small formed looking stool that sort of does dissipate when flushed).

I can only explain that my bowels (throughout my belly) feel SORE, and my anal area feels like there's pressure, like I'd like to just sit on the toilet and keep trying to go.

A few months ago, I was scoped upper and lower, and my upper showed nothing at all concerning, and my lower showed a J pouch that looked better than most people's, with only a few aphthous ulcers here and there, and not enough to call me out as having Crohn's (since I have the fistula) or true "pouchitis," though he said if I felt symptomatic, he'd treat me for pouchitis or SIBO (because I DO get bloating and other issues that feel better with watching FODMAPS). But nothing like this pressure I'm having!

I read that Canasa can actually cause IBD issues... I wonder if the Canasa is to blame, or do you think I've developed some sort of rebound pouchitis?

Thoughts????

Replies sorted oldest to newest

Hi Rachel, sorry to hear about the recent troubles!

This doesn't sound like pouchitis to me, especially since you're not having watery stools. It sounds more like an emptying issue, either due to cuffitis or outlet narrowing for some other reason.

If you think the Canasa might be worsening the situation instead of improving it, maybe your GI would prescribe something like anucort or proctofoam.
P
It might be helpful to know through a cal protectin test if you have any inflammation. I am not sure which diagnosis that would lead to but it could be revealing. Also, have you changed your diet at all? For instance, my son just stopped eating bananas near bedtime ( a seratonin food) and that seems to help him sleep more - though that would not explain all your symptoms.
BM
Rachel,
I was diagnosed with cuffitis back in November 2013. I was on the salofalk suppositories (canasa for Canadians) and while it did help, I also often felt as if I had a very localized inflammation, like maybe an abscess was forming. Anyways, I started to feel better and stopped taking them. Few months later the cuffitis was back, but when I told my surgeon my feelings about salofalk, she prescribed Proctofoam. What a difference! Took 2 weeks to feel almost normal, but I no longer feel 'sick'. No more feelings of urgency or anal pressure which were 2 of my worst symptoms. I'm weaning off it now.

Maybe try it out? Just in case things are different in the U.S. Proctofoam is a mousse (kinda messy compared to the suppositories). 1% hydrocortisone and 1% pramoxine hydrochloride.

C-jay
CJB
What a nuisance, Rachel. Maybe it would help if your GI had a look. It sure could be pouchitis, which hits each of us differently, and you've described what happens to me when I stop antibiotics. Cipro changes the gut flora dramatically; I'm very glad it's available to me, but I suspect I'll never get all of my pre-Cipro flora back.
Scott F
Thankfully, today I feel a bit better. I went back FODMAP yesterday, and took it easy on my gut.

I'm so frustrated by my body these days. I'll have one week of "ok," and then the next week will throw something bizarre at me... and it'll last 7-10 days... and then it'll go away. I cannot even fathom why this is happening to me these days, and I'm, again, completely frustrated.

I have an appointment Thursday with my IBD GI, so we'll see what he thinks. My guess is he'll say stay off the Canasa (I hate that med!), but not sure if he'll put me on something else.

And now, with the Cipro gone, the fistula is back to bleeding some, and it pinches a lot. But I want to give my body a break, so I'm just going to suck it up, do sitz baths, and just... take one step at a time.
rachelraven

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