Hello this is my first post my j pouch is about 1 year and 2 months (when it was constructed) and its been connected and working for just about 10 months. these last 10 months have been very challenging, a small portion of my anus and what's left of my rectum still has pretty severe active disease but my surgeon was hopeful as I am young 25 years old that it wouldn't be an issue. Since the surgery my number of bowel movements has always been high the lowest being 8 on the rare good days if I stopped eating very early As well as eating much smaller portions. I wasn't really keeping track of my bowel movements but the average has always been 12+ This would soon be followed by what I think was the beginning of pouchitis showing up. The symptoms would come every month urgency would increase and I wouldn't be able to hold my bowel movements at times especially at night, In the beginning this would go away on its own in about two weeks with salofalk suppositories being the only medication I would take. About 4 or 5 months ago I had another pouchitis flare that was more severe and was not going away on its own I was scoped and it was confirmed pouchitis. I was put on metronidazole 2 tablets 250mg 2 times daily and cipro 500mg 1 or 2 times daily (I forget) every 12 hours for two weeks. That seemed to clear things up in about 3 days but soon after I was off the antibiotics the symptoms quickly returned and I got back on antibiotics about 1 or two months later, The symptoms started clearing completely after 5 days but this time my doctor put me on metronidazole 2 tablets metronidazole 3 times daily along with cipro 1 tablet 500mg twice daily every 12 hours. After I came off them you guessed it the same thing happened.
I pushed through two months of torture I was getting up to go to the washroom so often 20 times at night alone and up to 50 times some days within a span of 24 hours, the last 2-3 weeks of the flare I barely got any sleep and cant even count how many times I went to the bathroom in my pants. I am missing school and work and haven't been able to do much this last year I really need to get this under control or I'll have to go back to the bag I cant gain weight I'm 128 pounds at 5ft10. I started Entyvio infusions almost a month ago two infusions so far and I was also put on prednisone 40mg and it did not do much of anything, the only thing that works so far is antibiotics I'm back on them today is the 6th day my symptoms are 90 percent better but I still have rectal pain and some urgency with slight incontinence if I eat a lot close to bedtime. I know I cant stay on antibiotics forever they can have serious side effects, I would also like to mention I was on entyvio 4-5 years ago before my ostomy surgery I waited 3 year and a half to have my jpouch done because I was always worried of how damaged my rectum was, it never stopped bleeding I don't know if I was ever a candidate for this surgery because of how diseased my rectum and part of my anus was..
I would like to know if there's any way I can keep pouchitis from coming back or at least keep it controlled when I get off the antibiotics. I've seen a lot of people on here talking about low carb diet, my diet is mostly protein but I would have rice and potatoes I noticed people on this forum say that rice and potatoes along with most carbs can feed bad bacteria and cause pouchitis easily since we do not have a colon. Do I need to stop all fruits and starchy carbs and stick to protein and vegetables what about legumes? also I would love some natural recommendations I heard a lot about oil of oregano on here and should I be on a good quality probiotic once I'm off the antibiotics, thank you very much for your time sorry for the long post.
