I got a virus last Sunday and it's thrown my pouch all out of whack. This happened once before. I tried Flagyl for four days but had no improvement - which is odd because typically, Flagyl works really fast in the past when I've had pouchitis. I do have Cipro here too. I know some say it helps to double up on both antibiotics when you have a bad flare up. Thoughts on this would be appreciated.
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I always take both antibiotics, I honestly don't know or remember at this point if I've ever just been on one. Just don't wait to long, if flagyl usually helps but isn't it could be something else and may need a doctor's appointment.
It’s quite possible that this isn’t pouchitis. Lots of us get temporary GI disruptions, just like people without J-pouches. Maybe call your doctor before going all-in on a questionable diagnosis?
I had colonectomy in 2001 with j pouch constructed because of UC . I developed a fistula in 2015 and had fistula repair surgery . Since fistula repair I am having frequent bouts of pouchitis. I take Cipro and Flagyl together which helps but about 2 weeks to a month after and sometimes maybe a week after I finish antibiotics I develop pouchitis again. I also have a lot of trouble emptying my pouch and frequently sit as long as an hour sometimes 2 hours on toilet because I never feel like I'm finished and have rectal pressure and pain sometimes most or all of the day . Also , since fistula repair my incontinence is worse than before fistula and pouchitis is much more frequent. Prior to fistula I can only remember having 1 bout of pouchitis. This recurring pouchitis, incontinence and rectal pressure and pain is really having a negative impact on my life . Any suggestions? Has anybody tried taking Flagyl or Cipro or both every day just once daily at bedtime as a preventive maintenance therapy ?
I took cipro and flagyl in rotation with other antibiotics for over 20 years before finally going on biologics the past 5 years, which enabled me to cut my antiibiotic dosages. C.S.- your post above mine suggests that you have the symptoms of poorly treated Pouchitis or Crohn's. When were you last scoped? You may have antibiotic dependent pouchitis and need to be on them chronically. You also might need biologics at some point. Those symptoms you mentioned are all due to not adequately treating pouch inflammation - you need to stay on top of your treatment and when you don't it gets worse and those are the symptoms that occur.
I agree with CT. I don’t know what effect the fistula surgery might be having, but clearly the inflammation needs tighter control. I take Cipro and Flagyl every day, and I’ve found that a single dose at bedtime works just as well for me as splitting the dose and taking it twice a day.
CT Barrister and Scott F thanks for your replies. My last scope was about 2 years ago . At that time gastroenterologist told me I had pouchitis flare up and possibly Chrons but it wasn't definite for Chrons. She referred me to a gastroenterologist closer to where I live for further follow up but wouldn't give me a prescription for pouchitis at that time telling me I would have to see my local gastroenterologist for this . Needless to say I was not happy with this as I was in need of antibiotics at that time as she clearly saw on my scope. I had to see a doctor on call at our local hospital when I got home. About 3 months later I finally got to see local gastroenterologist and after trying Cortifoam enema and next Entocort enema which didn't work for me , I told her Flagyl and Cipro in combination helped me in the past. She gave me a prescription for both and on a future visit gave me a prescription with 3 refills for both. I used all these up and called to make appointment to get a new prescription only to find out that she had sent my local family doctor a letter saying that she didn't need to see me again . She didn't even scope me while I was her patient. I was quite disappointed and shocked about this situation . My family doctor has given me a prescription for Cipro and Flagyl for 10 days treatment with 6 refills which is good but I don't knowable what I am going to do about seeing a gastroenterologist again , my family doctor said I would need to have an even worse condition than I have now to be referred to a gastroenterologist again . This is so frustrating, I feel I need to have a gastroenterologist to keep check on things but I think it comes down to patient overload for these gastroenterologists in my area . So I guess I'll have to take Cipro and Flagyl until I can get to see a gastroenterologist again. I am concerned about having to take these antibiotics all the time , have either of your gastroenterologists given their opinions on long term continuous use of Cipro and Flagyl ? Scott F what is dosage of Cipro and Flagyl you take at bedtime? Looking forward to your responses. Thank you.
20 years ago I asked the question about continuous long term antibiotics and my GI at the time said “you are the Guinea Pig.” It’s now been around 24-25 years and is kind of a moot issue at this point. But I am on much lower dosages than I ever was before since starting Remicade.
CS, you need to be scoped and you need to be actively treating with a GI. To carry a chronic pouchitis and/or Crohn’s diagnosis and not be scoped in 2 years isn’t a good situation. Your situation has been allowed to deteriorate and you are now in a situation where you have serious health risks. The worse the inflammation gets the harder it will be to get back to good or somewhat normal bowel function. I think you might be a candidate for biologics but that’s for your GI to decide after you get scoped. Don’t be surprised if you get that recommendation at some point. But chronic antibiotic treatment should be attempted first.
CT Barrister thanks for your response and information.
I take Cipro 500 mg and Flagyl 250 mg at bed time. I started at a higher dose and very slowly reduced them until symptoms recurred, to find the lowest effective dose for me. I agree with CT that you need an ongoing relationship with a doctor capable of helping you manage this.