I’m one who has had to stay on antibiotics, and if you find several that work you can rotate them every 2-3 weeks to keep them effective. Even my Cipro+Flagyl has worked for years without rotation. I don’t know it that’s going to be your story, but there are a couple of things you can do to keep pouchitis away, and one or more of them might do the trick:

1) VSL #3 DS is a prescription-strength probiotic that helps prevent or delay pouchitis. I take 4 packets per day, which is a high dose, and I'm convinced that it helps. It's expensive if your insurance won't cover it, though.

2) A very-low carbohydrate diet helps some people significantly. It's at least worth a try. Remember that all starches and sugars are carbohydrates, even if they come from natural sources, like fruit.

3) Optimize your use of soluble fiber and Imodium or Lomotil. This doesn't change the pouchitis, but it can keep everything else working as well as possible.

Good luck!

Thank you Scott! 

I am taking HUSK and imodium, but havnt tried your two other suggestions. Diet mostly because i have been good while on the antibiotics, so I guess I was hopeing food didnt trigger it. But its most certainly worth a try! 

I have recently come to realize that I, too, have what's known in the parlance as "chronic refractory" pouchitis, meaning that I get inflammations in the pouch that must be treated with something. Lately I've been taking cipro for 2 weeks, then stopping. Usually I can go about 2 weeks before I have to go back on. 

I've been using VSL#3 as well, only 2 pouches per day. My GI recently told me that I shouldn't take it while taking cipro, since the cipro will likely kill off all the good bacteria anyway. I pay out of pocket for VSL#3, so it's really just throwing good money after bad. Duh!

I'm also waiting for approval to try Entyvio. I've had my pouch for almost 5 years now (how time flies). I was good for about 2 years before I started having inflammation issues.

Good luck!

Karen-

If your pouchitis responds well to Cipro then it (fortunately) isn’t “refractory,” it’s just chronic. “Refractory” means unresponsive to treatment.

My experience suggests that VSL helps even when on Cipro. It may be because my VSL dose is so high, or because I space them out, or because I’m imagining things. I’d suggest doing the experiment for yourself - your doctor is guessing about the Cipro killing enough bacteria to make the VSL useless, since no one really know how this stuff works.

Scott F posted:

Karen-

If your pouchitis responds well to Cipro then it (fortunately) isn’t “refractory,” it’s just chronic. “Refractory” means unresponsive to treatment.

My experience suggests that VSL helps even when on Cipro. It may be because my VSL dose is so high, or because I space them out, or because I’m imagining things. I’d suggest doing the experiment for yourself - your doctor is guessing about the Cipro killing enough bacteria to make the VSL useless, since no one really know how this stuff works.

Yes, you're right. I guess in my own brain I call it "chronic recurring," though I have heard my health care professionals use the word "refractory" when referring to my situation, simply because while the antibiotics manage the effects of the inflammation while I'm taking them, I can't stay off them and stay healthy.

I prefer not to be on antibiotics all the time. I always thought that the probiotics would mitigate some of the irksome effects of the antibiotics, but if the antibiotics are killing even some of those pricey little bacteria, it feels like throwing my money away. Like I said, I'm out of pocket for that particular therapy. I know my GI is only guessing about all of this, but what he said made sense to me.

I've never felt a striking or immediate effect from the probiotics, but I take them more out of faith.

I'm a person who tends to get the worst and most lasting side effects from the therapies I've tried for this disease, so I'm wary of anything that promises the kinds of risks that cipro does. I guess the chronic ringing in my ears and aching joints are just a small price to pay for periods of relative gut health.