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Hey,

I am five month post takedown and I’ve never had a great functioning pouch but everyone says it takes time to heal so I just told myself to wait it out. I probably go 15+ times a day on a normal day. The problem is I had my surgeries in Chicago and I don’t live there, so I don’t have easy access to my doctors. And I’m also battling medical trauma so I’ve been avoiding facing my pouch issues since I generally feel well.

My sisters wedding is in Chicago on Friday so I have been eating clean and a lot more fiber. I’ve been going to the bathroom a ton and my butt is raw. But I don’t think diet is completely to blame,

I had my first pouchscopy last week and the GI said it looked healthy, but we are waiting for the biopsy results to see if I have pouchitis. I have the cipro picked up and I took antibiotics recently for a different infection and my pouch function improved a ton! I’m getting desperate to slow things down so I can be there for my sister this weekend and not be in pain.

What are the risks of starting cipro now? I can’t wait that much longer and stay in this pain. What if the results are negative? My GI said sibo could be a cause. I’m having leakage, urgency, pain, etc.

thanks!

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Some people seem to get substantially better pouch functioning on antibiotics even if the clinical findings aren’t clearly pouchitis. It’s less clear whether that gives a lasting response with a 14-day course (like acute pouchitis generally does), vs. long-term antibiotics. The biopsies will usually show mild inflammation regardless of how well things are going, so I think they can be used to justify whichever course of action is preferred.

You might be overdoing the insoluble fiber - not everyone can tolerate it in large doses. Many of us supplement fiber, e.g. with psyllium, but that’s mainly soluble fiber in moderate, controlled amounts. “Eating clean” may be a poor strategy for someone without a colon. I’m not suggesting a diet of McDonald’s burgers, but rather that general dietary advice tends to assume an intact colon, and whatever diet work best for you is likely to be more nuanced.

I’m assuming that you’ve been trying to delay bathroom visits (“stretching the pouch”), but you don’t say what happens when you do that. Pain? Accidents? Fear? We each have different signals, and they vary in reliability.

SIBO in my body mostly showed up as extreme gassiness. That does lead to excessive bathroom visits, but it’s very different from a pouch that demands emptying when a few tablespoons of stool enter it.

Perhaps you could discuss a trial of Cipro with your doctor, regardless of what the biopsies show. After a couple of weeks you’ll have more information, and you can see what happens when you stop the Cipro. It’s best to do this in partnership with your doctor, since you’ll need prescriptions to manage any experimentation.

Have you looked for a local (but knowledgeable!) gastroenterologist? As you’ve observed, a far-away doctor can be inconvenient. Some of us are followed by our colorectal surgeon long-term, but most are not.

Good luck!

Scott F

I agree with Scott's answers.  Start the Cipro and take it for at least 14 days.  See what happens.  I have a healthy well functioning pouch and cannot tolerate too much fibre whether that be grains, nuts, lettuce, fruit etc.  That gives me frequency and often horrific butt burn.  I'd suggest going back to a soft diet of well cooked items.  For those of us without a colon, fibre often is very nasty and works to increase bm's.

Have fun at your sisters wedding.

J

Thanks for the replies! I reached out to both my GIs to see if I could get started. Hoping I hear back today or else I’ll just go ahead and start the antibiotics.

i have a new dietician who has a j pouch! So I’m confident I’ll find the right diet for me. However, I am a private chef (www.Florabellefood.com) and I am at the mercy of my clients a lot of times. I can’t always cook all day for them and then make something special for myself. Are there tricks to adding more fiber to your diet? Since my surgery last year I have gained a bit of weight from eating more high starch diet/being less. I’m finally starting to get back to my pre-surgery fitness but I feel like the missing piece of my diet and normalizing my blood sugar is eating more non starchy veggies. I’m frustrated that I have to make concessions once again for this disease.

Im hoping the antibiotics work and over time my pouch will accept my diet!

L

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