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Reply to "2 days post stoma reversal, living in bathroom!"

Hi, New Pouchie.

I hope this will be helpful. My first bout of pouchitis was two weeks after reversal. When I left hospital it was all going well, no burn, no problems other than the expected heavy soreness in the abdominal area and in the incision. Then almost overnight at the two week mark it became difficult: urgent frequency, leakage, Burn, and the feeling of pooping razor blades or pieces of glass. I could not make it to my surgeon's office but from my description they knew it was pouchitis and they called in a prescription of Cipro to the pharmacy.

Cipro worked almost immediately. By the time I took the third tablet I had solid formed output (as if I had a healthy colon) and only four or five times a day. My very first course was for 14 tablets but I was instructed to take it for only seven days. My surgeon thought I should take the lowest dose for the shortest time. But that was a big, big mistake because three days after I stopped, pouchitis came back with a fury. I had stopped too soon. The pouchitis bacteria was not completely killed off yet and those three days gave it time to build up and come back. I learned. Next time I took a longer course, 14 days, and I made sure I had a supply of Cipro so I was never caught short. 

I got pouchitis four or five times in the first eight months or so. I would have a brief period of relief after Cipro, but it came back within 10 days or so, and back to a course of Cipro.  Each time, I took a 14 day course (two tablets per day). I took one tablet in the morning a few hours after breakfast; one tablet at night a few hours after dinner. I never took it with diary or calcium beverages -- so no orange juice, grapefruit juice, milk, or yoghurt as directed by the pharmacist. I took Florastor but I left several hours in between Cipro and Florastor because the Cipro could kill off the good Florastor probiotic before it reached the intestines. Maybe there is no proof behind the theory of the antibiotic destroying good probiotic bacteria, but it's the strategy I followed. 

I worried that pouchitis would be a constant part of my life but I haven't needed Cipro in a year and I no longer suffer pouchitis. I average four to eight times in 24 hours, no leakage or burn whatsoever, and I eat almost everything, even salads, but everything in moderation. I stay away from nuts and seeds and popcorn and processed meat (no salami or other hard cold cuts) because they are insoluable and can hurt or damage on the way out. I was given a prescription for Flagyl but I never took it because Cipro worked for me, where Flagyl might work for others. It's trial and, unfortunately, error.  I found that when I worried or was stressed, my stomach would tie in knots and output would be affected and burn. Also, because food intake during pouchitis flare could be sketchy, or my stomach hurt too much to eat, I made sure I ate nutritious food. No junk food until I got much better. I wanted my system to absorb as much nutrition as possible before the food left me. I wanted to help my j pouch learn to live its new life. This is detailed but I hope it helps you, and anyone else in their first year. 

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