Does anybody find that their pouchitis symptoms fluctuate? I have some days with few symptoms, while others I get little sleep and have 15 daily BM's.
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My pouchitis tends to be less variable than that. Are you sure it's pouchitis (or *just* pouchitis)?
mine is not usually that variable. typically, mine will get progressively worse until i start taking medication or rotate to a new antibiotic. my new regiment is to take flagyl for a couple weeks, xifaxan for a couple weeks, then try to go as long as possible not on a medication. i'm at the 2 week mark now on no meds, so while i have pouchitis symptoms of increased frequency, it's not that bad yet. i do have some better days than others, but once I have to start getting up more than once a night, i'll get back on my meds. for now, i'm just taking one imodium at night and can usually make it til the wee hours of the morning.
Hi Guys. I had a complete colectomy in 2010 and have a J pouch. Since 2010 I have probably had pouchitis 15 times. Each time landing me in the hospital anywhere from three days to a week. It got better for a little while until I got pregnant . I am 12 weeks along and have had pouchitis twice in the last month. I see my new G.I. doctor Friday and I'm hoping they can put me on some type of medication that will help but is safe during pregnancy. I have never been put on anabiotic's for pouchitis and I find that kind of strange because a lot of blogs I read have stated that's usually the go to treatment. The first couple years after my surgery I was having close to 20 bowel movements a day. The last few years it varies between eight and 15 depending on how much and what I eat. Since I got pregnant it has increased by a few. I've been told that in my case the recurrent pouchitis is due to my uterus expanding and causing the J pouch to become inflamed. I have also always had a problem with rectal pain burning and itching from going to the bathroom so much but unfortunately Imodium and all those other types of drugs do not work for me because when the school gets harder it makes the pain worse. Has anyone else experienced these types of symptoms? I've tried doing sits baths, creams, nothing really helps and I just have to tough it out for a day to three days until it goes away. It's extremely uncomfortable and keeps me up at night But luckily I don't get it very often. In any case, I know how frustrating it is and I hope that you feel better soon!
Krista, if it's really pouchitis then hospitalization seems a bit unusual. What else did they do for you, if not antibiotics?
In any case, one thing you could try that's quite safe during pregnancy is VSL #3 DS. It managed my chronic pouchitis for a few years, until I needed to add antibiotics.
Yes! My pouch symptoms change constantly, from morning to night even. I still can't figure out why. One time its a normal BM, feeling ok. Then 20 minutes later, its super painful with cramping and burning. I still have 8-15 bms a day, everyday. Most all are very loose and explosive. Recently, I've been getting a lot of painful constipation too. Wish I could figure it out! Good luck!
Originally Posted by Krista_Marie:
Hi Guys. I had a complete colectomy in 2010 and have a J pouch. Since 2010 I have probably had pouchitis 15 times. Each time landing me in the hospital anywhere from three days to a week. It got better for a little while until I got pregnant . I am 12 weeks along and have had pouchitis twice in the last month. I see my new G.I. doctor Friday and I'm hoping they can put me on some type of medication that will help but is safe during pregnancy. I have never been put on anabiotic's for pouchitis and I find that kind of strange because a lot of blogs I read have stated that's usually the go to treatment. The first couple years after my surgery I was having close to 20 bowel movements a day. The last few years it varies between eight and 15 depending on how much and what I eat. Since I got pregnant it has increased by a few. I've been told that in my case the recurrent pouchitis is due to my uterus expanding and causing the J pouch to become inflamed. I have also always had a problem with rectal pain burning and itching from going to the bathroom so much but unfortunately Imodium and all those other types of drugs do not work for me because when the school gets harder it makes the pain worse. Has anyone else experienced these types of symptoms? I've tried doing sits baths, creams, nothing really helps and I just have to tough it out for a day to three days until it goes away. It's extremely uncomfortable and keeps me up at night But luckily I don't get it very often. In any case, I know how frustrating it is and I hope that you feel better soon!
If you have not tried Calmoseptine for the butt burn, please do so, it has worked extremely well for me.
Got my pouch in 1991. After a couple of years of recurring pouchitis my GI guy put me on Levaquin (1 500mg tablet daily) until gone and then VSL#3 probiotic (non prescription - I never needed the double strength (DS) prescription version). I have been pouchitis free since 1995 this way.