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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 !

Every single day for the 16 years I have had the pouch.  I went from UC to pouchitis with 6 months of ileostomy in between but still wouldn't go back to the ileostomy.  Pouchitis is normally better than the UC was.  The UC was going to kill me.

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.

 

I have not had it, either.  I've had other issues, but not that.  So grateful.
Originally Posted by Robu:
Seems like 0 should have been a category option. Just curious, personally if anybody else has  lucky enough to avoid it altogether.

 

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
Originally Posted by Jilly:

I checked "6 or more" because I'm on antibiotics all the time. But my actual flares are more like 3-4 per year. And they're taken care of fairly quickly. 

 

I have a feeling the being on any antibiotic, for the simple reason that while it gets rid of the bad bugs, it also gets rid of the good, and without the good, how well is your GI tract going to work?  So, I take the Cripro (ten days, max), and eat lots of Avtivia and take probiotic pills, and in the end, as it were, everything goes back to normal, whatever that is at the moment.

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.

Originally Posted by Bean101:
I'm about 1.5 years post-op and get pouchitis regularly. Now that I'm familiar enough with the symptoms, I get a cipro Rx right away and it's better within a few days. My surgeon said some people need to stay on an antibiotic indefinitely and I think I'm going to be one of those.

My doctor said that same thing to me about needing to be on cipro indefinitely. However, I started getting sick from being on cipro all of the time and he decided to put me on prescription VSL3 (a probiotic) and it has worked wonders. If being on cipro 24/7 isn't bothering you then you shouldn't change anything but if you start having issues, ask your doctor about VSL3.

I'm about 1.5 years post-op and get pouchitis regularly. Now that I'm familiar enough with the symptoms, I get a cipro Rx right away and it's better within a few days. My surgeon said some people need to stay on an antibiotic indefinitely and I think I'm going to be one of those.

I believe I've only had pouchitis once in 21 years....I could have forgotten an incident back there aways?  I really never limited my diet much from the beginning.  BTW A very nice 20 something guy came to the hospital to answer questions and tell me about the the J- Pouch procedure when I was first considering it.  He told me that he had some friends sneak some Doritos into him the day after surgery.  He said he REALLY paid for that stunt!!  I can hear a lot of you gasping right now!   A little anecdote that just came back to me from 1994.

I wish I could say what I'm doing that has helped this go fairly easy for me (it definitely was not for the first couple years), but I just don't think about it that much most of the time.  I will talk to my wife and see if I'm forgetting something and ponder it some more and will get back if I think of something that is helpful.

 

I constantly had pouchitis and was on a steady dose of antibiotics. My doctor finally put me on prescription double strength VSL3 (probiotic) and I haven't had pouchitis since. It has been a year and I feel so much better being off of the antibiotics.

I used to have bouts of pouchitis three or four times a year. I have learned to follow a daily routine of Activia for breakfast, and I watch the balance of proteins and carbohydrates and the size and character of vegetable foods I eat. I am very careful to avoid foods that are indigestible (like mushrooms, darn it), and to avoid as much animal fat, though not all animal fat. I haven't had pouchitis in three years. Now that I've said that...

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