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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