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How times per year is pouchitis an issue

0-3 times
4-6 times
6 and greater times
Posted by Babs52 ·

Comments (30)

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Originally Posted by ChasPope:
In 7 years I have never had it. Fingers crossed and knocking on wood.

I have also been fortunate that in the 3 years I've had mine I have never had pouchitis.  Not sure even what the symptons would be.  But I cannot eat alot at once and I try to eat what doesn't bother me.  It's a learning process.

 

 

Mandarrr, I've tried eliminating a few things like milk (which I drank a lot) and cut way back on sugar but didn't see much of a difference. I'm still off the milk.
Back when I was diagnosed with UC in 1995 I went on a very strict diet and had no relief so gave up on that also.
Mandate, I've tried eliminating a few things like milk (which I drank a lot) and cut way back on sugar but didn't see much of a difference. I'm still off the milk.
Back when I was diagnosed with UC in 1995 I went on a very strict diet and had no relief so gave up on that also.
Hi CH
I am just wondering what you have done as far as diet goes? Curious cause this is my 1st bout of pouchitis and am always trying to find out if a certain diet has worked for IBD sufferers.
Thank you! I wish you the best
-Amanda
 
Originally Posted by CH:
I've had pouchitis since my TD in 2006. GI's have tried everything but sooner or later the antibiotics stop working. I've been on VSL 3 DS for may years and now Dr say there's nothing left to do other than an ileostomy. So as I wait for my referrals to surgeon's I'm doing research to see if I missed something. Really don't want to revert back to an ileostomy.

 

I get frequent pouchitis and was prescribed Ciprofloxacin on and off for years. My consultant assured me that I could carry on taking it whenever I needed to. It would work like magic and I had few side effects. However, after several years I was diagnosed with C.Difficile and ended up in hospital seriously ill. I was then told this was due to overuse of this antibiotic and I am not able to take it anymore. Now I take a double dose of VSL#3 every day and suffer from pouchitis much less. When I do have an episode I am prescribed Metronidazole or Vancomycin. These make me feel really bad and I suffer from most unpleasant side effects. I really wish I could carry on taking Cipro.

I've had pouchitis since my TD in 2006. GI's have tried everything but sooner or later the antibiotics stop working. I've been on VSL 3 DS for may years and now Dr say there's nothing left to do other than an ileostomy. So as I wait for my referrals to surgeon's I'm doing research to see if I missed something. Really don't want to revert back to an ileostomy.

I HAVE HAD POUCHITIS FROM DAY ONE I THINK..i am antibiotic dependent..without them i could not function because the pouchitis would get so bad in no time with severe irritation that you shutter in pain..there is no living with it..i also have to rotate the antibiotics because they stop working anywhere from 2 weeks to one month..i take probiotics i avoid excess sugar do not eat starches both known to feed bad bacteria..but it still goes on...trying to figure it out is a mystery..only thing consistent for me is inconsistency with my pouch..

2.5 years with jpouch and I believe this is my 1st instance of pouchitis. I could not have been able to tell the difference between pouchitis and a flare until a week ago, but I had a  a jpouch vet explain it to me. No matter what I ate, I was pooping all the time (rather than most of the time) and perianal pain that was not normal (like, thinking I needed to go to the ER soon pain.) She, like me, follows SCDiet and that reduces symptoms and the onset of pouchitis. But when diet doesn't work, this pouchitis is a total downward spiral. On day 5 of Flagyl, and I felt better after 12 hrs! SO tired and poopy before the meds! I am not too fond of them either but it is too risky to have untreated pouchitis. Cipro has hard core side effects. Oregano oil and probiotics help your body with the antibiotics.

 

 

Amanda 
*UC- 2/2011
*perforation and colectomy- 7/2011
*j pouch- 5/2013
*crohns- 2/2014
*SCD- 3/10/14 !

I have had my pouch for over 20 years and after about the first 5 or 10 years started having pouchitis a few times a year.  Dr. always prescribed a combination of Cipro and Flagyl, but I hate the way the make me feel (nauseas and made me have a strange taste, etc.)  I haven't had pouchitis in a couple of years since I started taking a probiotic (Flora-gen 3).

I'm 20 years out and just started having pouchitis this year. I've been on antibiotics 2 times and am starting today on my third time. My doctor also recommended a probiotic so I'm going to start on that. But I guess 20 years is pretty good with no problems. Hopefully new meds and probiotic work.
My daughter had problems with VSL3, it made her go way more!  So I started her on a low dose kids probiotic then 25 billion then 50 billion. Her functional med dr suggested Floracor probiotics which has a strain called Saccharomyces boulardii because she has candida and it helps kill it. Anyways now she's on a 50 billion probiotic and the Floracor and so far so good. I have read about others having good results with this combination. Good luck, I hope you find one that works for you!
 
Originally Posted by Shonya:

Mine is pretty much all the time, but that's because I won't take antibiotics anymore.  While they help the pouchitis, they make the underlying autoimmune disease much worse, so I just live with it. I tried VSL3 and it made me bleed like mad! I haven't found a probiotic that I can handle without becoming quite ill.

 

Most times I've had pouchitis is because I ate too much junk food or just plain ate too much at one sitting. At first after my surgery, I was on VSL3 for several months and it worked quite well. Then my insurance decided not to cover the cost anymore and my pharmacist recommended Floragen 3 which is over the counter and it also works very well for me. I have Cipro on hand just in case and it gets me back to normal within a day. I don't need the Cipro very often anymore. I take the Floragen first thing in the morning and a couple yogurts a day. Apples and bananas keep things nice and smooth also. I can pretty much eat whatever I want, just in small amounts. Eating that half bag of chips when my will power is down is just plain stupid and I pay for it but it happens every now and then. Who can only have a handful of Cheetos!? Not me��

In the early years I would experience pouchitis 4 or 5 times a year. I would get terribly ill with the antibiotics. The doctor started me on VSL #3 probiotic and Activia yogurt. I have had several this year, but the doctor's believe there is something more mechanical going on. Another appointment in a few days!
Marcella
Last edited by Marcella
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