2 days post stoma reversal, living in bathroom!

hi guys, I had my ileostomy reversed 2 days ago and have now have to go to the bathroom every hour, day and night. Also feels like I’m passing razor blades out of my backside! Right now I see food as poison because as soon as I eat I start having the cramping sensations.

how long does it take to get the frequency down a little bit? I know it can take a year before fully settled. Also, what do people in the UK use for the burning?

any help would be greatly appreciated!

Original Post

Not great really, turned out to be pouchitis, from day 3 after stoma reversal! Took a while before the doctors finally realised I actually had a problem instead of putting it down to ‘the adaptation process’. Had a course of cipro which worked amazingly, was down to 4 times a day after  only 3 weeks after reversal. But pouchitis symptoms returned 3 days after stopping antibiotics! Now on cipro and metro for 2 weeks. Getting pouchitis so soon and relapsing so quickly is slightly worrying for the future...

Hello, New Pouchie. Try not to worry. I had the same experience very soon after my reversal. Cipro worked wonders, but pouchitis would return after I finished the 14 day course. However, as I approached the one year mark things seemed to settle down. My pouch matured and figured out its new job. Now I have no issues and have not taken a Cipro tablet in 12 months. Early on I stayed away from fiber, mushrooms, cabbage, tomatoes, and peeled all vegetables before cooking. Now I eat everything in moderation. Try not to worry, your pouch is very young. Don't tie your stomach in worry-knots or you might not process food or nutrients properly. the feeling of razor blades is fissures from going so often or straining. Use a sitz basin to soothe, or a travel bidet to clean thoroughly. The warm water will stimulate blood flow and help heal the cuts inside. Happy new year.

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. 

Thanks for such a detailed reply Winterberry, I’m glad you now seem to have it under control. That is what I’m worried about - recurrent/chronic pouchitis. The 2 week course of cipro + metro finishes in a few days so we’ll see what happens. Been instructed to start VSL#3 once the course has finished.

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