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My name is Sabrina and I am new to the J-Pouch group. I am 27 years old and suffered 15 years of Ulcerative Colitis which is what prompted me to get my surgery on the 15th year and after being told that I am in the red zone for colon cancer, since it runs in my family too. So in September 2014 I had part 1 of 2 of my total abdominal colectomy. In December 2014 I got it reversed. Before my surgery, I had some of the worst flare ups I ever had in the 15 years of having UC and there was no rhyme or rhythm to my flare ups and my diet. No matter what I ate, gluten free, low dairy, low sugar, bland meals, or taco bell (not that I did) but I would still have severe flare ups, eventually putting me back on a ton of steriods, humira, and several other UC medications, until the only option, with no recovery from my flare ups was surgery. After surgery, I had my initial pouchitis within the first few months, took flaggyl and got over it. I was told that you can have a normal diet, even eating foods you couldn't eat before, so naturally I ate everything. Not logging what made me sick, of course, because my bowls were already irregular, it was hard for me to tell if it was my body functions recovering or pouchitis. Recently, I am feeling like I really need to think about restricting my diet, even though restriction didn't matter to my body before the surgery. I wonder if restricting it and being healthier now, after surgery, would make a difference in my pouchitis. I recently had a pouchoscopy and was told that I have pouchitis again, they prescribed me two weeks of flaggyl and then did another pouchoscopy and told me I still have pouchitis. I have my follow-up appt to discuss my results of the recent pouchoscopy in two weeks and would like to present another option to try with my physician and avoid taking flaggyl again. Does anyone have any experience with neglecting management of your diet and spiraling into the pouchitis black hole?? I find it hard to manage, a healthy diet with work and when life happens, and gets crazy busy, so any suggestions or tips/tricks would be greatly appreciated. I know VSL #3 and getting an immediate high dose of it all at once to cure the pouchitis and then taking moderate dosages on going has been mentioned but any other meal plans, work/pouch/life balance, and just general first time poucher advice. Thank you so much in advance. Looking forward to a lifetime of being a part of this group! 

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Dr. Bo Shen of the pouchitis clinic at Cleveland Clinc is not a believer of the notion that you can cure or control pouchitis with diet. That said, he has recommended reducing carbohydrates and fiber in the diet to improve symptoms. But, still not a cure. http://my.clevelandclinic.org/...itions/hic-pouchitis

There are many causes and types of pouchitis. Plus, the same symptoms can occur with cuffitis and IPS (similar to IBS). But, since you've had pouchitis confirmed by endoscopy, you can be pretty certain about it.

Some folks here have gotten good results with the FODMAP diet, which is an elimination diet of various foods, and you gradually add a food back, one by one.

Jan

(Thanks, Jan for the link.)

I have been searching and searching for the dietary answer....no pot of gold yet!

It seems to be a person by person basis as to what may or may not trigger flareups. The common thread in most of the diets is that: grains are thought to be problematic and certain nightshade vegetables.  Stuff that I think is healthy, may be adding to my problems. 

Unproven to me as yet.  Any and all food seems to be my enemy.

I have a current similar post up regarding the AIP Whole30 diets.

I hope you will have success.  

I had my take down in February. I was told that no restrictions were necessary. It took me a while to figure out that it was my diet that was causing the SEVERE pain. Anything seasoned at all with anything except salt is a huge trigger for me. Black pepper being the absolute worst. Start back really bland and work your way from there adding a new food every few days. Keep a food journal. It has been a lifesaver for me. If having pain, I will sit in a hot bath until the water cools ( making time for this is the problem) and then you can put a small amount of calmoseptine right inside the anus and it will help the pain tremendously. I avoid eating out at all costs. Hang in there. Quality of life is still not great, but definently better than before! 

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