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So there's been a GI thing going around for a few weeks, and I think I caught it and my jpouch hasn't been happy. The first week it presented as random severe abdominal pain with some nausea and belching, slightly increased urgency and frequency of liquid output (on par with what non-pouchers hit with the bug were experiencing). Now in the second week (maybe it's been 2.5 weeks) I'm not as nauseous and the abdominal pain has subsided, but I feel a sudden urgent need to go about once an hour or so, and not much is coming out. I have a great appetite and have been eating and drinking regularly, but my butt hurts (the cheek muscles more than the hole) and I'm feeling pretty tired from getting up at night. The biggest nighttime nuisance seems to be when I roll onto one of my sides, I suddenly have to go with great urgency. I try to sleep on my back, but I have a hard time staying there.

This feels very different from when I've had pouchitis previously, and I know from experience that antibiotics only serve to make me significantly worse so I don't want to call my surgeon because that's the only after-care he seems to know about - antibiotics for everything. I'd way rather deal with my existing symptoms than be flattened by the side effects of Cipro or Augmentin. (Super jealous of the folks that can tolerate that stuff!)

Has anyone experienced something like this, like a GI bug that upsets your j-pouch? Any tips for riding it out? I feel like I'm so close to being over it, but the continued frequency/urgency is wearing me down.

Thanks!

 

 

 

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From my own experience what you are describing is pouchitis almost to a tee. Have no idea what your previous experience was but your above experience is mine with pouchitis.

If your self diagnosis proves wrong, you will get worse and worse and not better.

When were you last scoped? I would suggest a quick look up is in order, ASAP. That way you will know, and you will not be waiting to get worse while hoping to get better. I have seen many people in your situation whose self diagnosis was wrong, they got categorically worse, and then had all kinds of problems getting back to baseline. Don’t let it spiral out of control on you - you have the power to stay on top of this.

Last edited by CTBarrister

It could be pouchitis, but some of us do get a prolonged GI disruption after a garden-variety viral infection. The most important short-term goal should be to avoid dehydration. Pay attention to your urination (frequency, volume, color) as a good way to monitor hydration. Bulking agents like psyllium can help with stool consistency, but urgency might be about the same. It’s exhausting, so I hope it clears up soon.

As far as antibiotics go your comments suggest that you are thinking of them as being more similar than they are. If you’ve really only tried Cipro and Augmentin then you know much less about the others than you seem to think you do. I’d stay away from Levaquin, which is related to Cipro, but other than that each antibiotic is a very different chemical with very different side effects and tolerability.

The fact that I've been feeling better instead of worse over time, and the fact that several people in my social sphere have had a lingering stomach bug with similar symptoms, is why I don't think it's pouchitis.  I'm specifically posing this question to folks that have had similar issue where a bug has bothered their j-pouch, what that experience was like and how they dealt with it.

 According to my surgeon, cipro and flagyl are the top two antibiotics for pouchitis. Cipro wrecks me, and last time I had pouchitis-like symptoms he didn't want to try flagyl even though I was willing. He thought flagyl would be worse than cipro for side-effects and suggested augmentin, which made me vomit so violently I did, in fact, wind up in the ER for dehydration. The next time I needed antibiotics for a respiratory issue, the prescribing doctor gave me amoxicillin which also completely leveled me and I couldn't stay upright for almost a day (I know it's part of the augmentin formula, but I had tolerated amoxicillin in the past and thought perhaps it was the other compound in augmentin that was the problem when I agreed to take amoxicillin on its own). When I reported the side effects, the prescribing doctor told me to stop taking them immediately.

So that's samples from three families of antibiotics (sulfonamides, fluoroquinolones and penicillins) that have caused problems, or, in the case of flagyl, have been deemed too risky to try. I have been trying to find an antiobiotic that I can tolerate for years, with oversight and input from my doctors, and it has been a horrendous experience.

In the future, I don't care what you think my comments suggest, please don't reply to my posts if you can't keep the responses free from condescension. 

Last edited by J9Pouch

I feel you. I also cannot sleep on the side easily. Even in sleep if I somehow get on the side the urge to go or gas comes out soon. I've found what I can say escape route not a solution. I just finish my last meal by 8:30 and then I'd have 1 tsp lacti fiber(pysillium husk and lactinol monohydrate. It clears up my intestine and After 2 rounds to bathroom I can sleep till 6 without any more urge. I just sleep on my back though I dont like it but its better than the uneasiness caused on sides.

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