Hi, Sue. 30 days is longer than usual for pouchitis, but perhaps your biopsies suggested something worth treating more aggressively. When you say the Flagyl is kicking your butt, do you mean you’re having troublesome side effects? If so your doctor might consider a shorter course or a different antibiotic. In any case symptoms will usually start to improve within a few days. Pouchitis doesn’t always show up on pouchoscopy, and it’s sometimes worth treating based only on symptoms. Good luck!

Scott,

Yes, troublesome side effects. I am going to tough it out another week then call my doctor if things don't improve. We're going on vacation July 7th, so I need to be better by then.

Thanks for your response.

Sue

1500 mg is a pretty high dose of Flagyl, too. I take 250 mg/day for my pouchitis (though it’s chronic and I also take Cipro). Maybe give your doctor a call sooner just to discuss the side effects and possible remedies.

Several years ago I had a course of 30 days with Flagyl only (3x 400 mg per day, no Cipro) against chronic pouchitis and a treatment with probiotics (VSL#3) afterwards. For me Flagyl alone didn't have the same good effect as the combination with Cipro.

So if you have side effects I would contact your doctor and change something about the rather high dose of Flagyl, or perhaps alternate with another antibiotic or a probiotic.

fyi, pouch inflammation will almost always show up on pouch biopsies.. My former GI the great Dr Shen said he only treats pouchitis on visual scope or symptoms, and never on just biopsy reports..

Good to know. Thank you!!

@Pouchomarx posted:

fyi, pouch inflammation will almost always show up on pouch biopsies.. My former GI the great Dr Shen said he only treats pouchitis on visual scope or symptoms, and never on just biopsy reports..

So Shen essentially said biopsy/histology is very sensitive but not as specific for pouchitis. Interesting. I read an earlier paper of his detailing a proposed scoring system for pouchitis which included symptoms, gross pouch appearance and histology. There was a certain point threshold one had to meet but essentially you need contribution of 2 out of 3 domains to get there (maybe 3/3, my memory sucks). He made the point that too many are treated based on symptoms alone, with unnecessary exposure to abx. I was treated empirically for pouchitis, felt better, then had a scope after 10+ days on cipro that was normal. Wonder if I ever had it to begin with or if inflammation had healed by then. Guess I’ll never know but I will push for a scope before taking abx again.

Your information is very helpful to me in understanding the necessity of abx. Thanks very much!!

I was completely overwhelmed at the thought of 30 days of hell. My plan is to take 2-3 weeks and go from there.

Hi Accept It,

As others have mentioned, I would tell your doc about any side effects you’re having as Flagyl can cause some neurological issues that usually revolve upon cessation of med but not always. You didn’t specify your side effects but if they are anything other than the typical mild nausea, bad tast in mouth, etc., and certainly anything involving confusion, balance issues, numbness/tingling in extremities, you should tell your doctor. Don’t just “Accept It!” (I’m sorry I couldn’t resist :-)

It’s certainly true that some are treated with antibiotics unnecessarily, but no one advocates leaving people in misery if an effective, tolerable, and reasonably safe treatment can be found.

Despise flagyl. Shen put me on tindamax at one point. Might be worth checking out if tindamax can be used instead.

@Pouch2021 posted:

So Shen essentially said biopsy/histology is very sensitive but not as specific for pouchitis. Interesting. I read an earlier paper of his detailing a proposed scoring system for pouchitis which included symptoms, gross pouch appearance and histology. There was a certain point threshold one had to meet but essentially you need contribution of 2 out of 3 domains to get there (maybe 3/3, my memory sucks). He made the point that too many are treated based on symptoms alone, with unnecessary exposure to abx. I was treated empirically for pouchitis, felt better, then had a scope after 10+ days on cipro that was normal. Wonder if I ever had it to begin with or if inflammation had healed by then. Guess I’ll never know but I will push for a scope before taking abx again.

yeah but if you have pouchitis a few times a year , scopes sometimes take a while to have done or a lot just cannot afford the cost of them. A pouchoscopy done at Cleveland clinic under sedation would cost be about $2000 after insurance.. I have high deductibles, which are $3500.00 individual or $6900.00 family, so I would rather do a course of antibiotics first that cost me about $5.00 . If it doesn't help then I would look into getting a scope.

@Pouchomarx posted:

yeah but if you have pouchitis a few times a year , scopes sometimes take a while to have done or a lot just cannot afford the cost of them. A pouchoscopy done at Cleveland clinic under sedation would cost be about $2000 after insurance.. I have high deductibles, which are $3500.00 individual or $6900.00 family, so I would rather do a course of antibiotics first that cost me about $5.00 . If it doesn't help then I would look into getting a scope.

Totally agree. Once pouchitis has been confirmed with scopes and the patient has an accompanying set of symptoms, abx without a scope makes sense. I think Shen’s point was symptomatology is often unreliable as other pathology can cause the same symptoms as pouchitis so in the newly diagnosed or in those who stop responding to their typical 2-3 courses of abx per year, then it’s time to scope/re-scope and possibly do other testing. High deductible plans are tough. My brother’s is 5k for individual and 10k for his fam. It’s too much. Our healthcare system is broken.