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I had vaginal cancer that required chemo and radiation. My colo rectal specialist who's pretty old is telling me that the radiation destroyed the pouch. I take lomitil and Imodium which stops the runs but then causes constipation and stomach pain. Then if I take nothing the runs get so bad I have a night of getting up 30 times to deal with a huge mess in diapers and having to change them over and over and clean messes until I'm dilerious. And then Im forced to take the lomitil again. It's a vicious cycle and miserable. And I can't have an ilimination sitting on the toilet. Nothing moves unless I get up or lay down. It's enough to drive me crazy.
has anyone out there had radiation near the pouch and recovered?
i don't know where to post a new subject. Sorry.
Hello, Balletbarre.
I'm sorry you are facing so many difficulties. Can you try Metamucil before your meals? It might help to bulk things up so that you can hold on. Liquid stool is difficult to hold, especially while asleep when your muscles are relaxed. Have you had an endoscopy to check for pouchitis? What does your old specialist say about help, if he says the pouch is not working due to radiation?
When you can't have a bowel movement while on the toilet unless you stand up and sit down again, try this: when you are on the toilet, lean backward slightly. For a few weeks after my reversal I had difficulty passing stool. I found that leaning back slightly, as if you were going to rest for a moment on the tank, and holding that position for a minute or so, worked every time. Just lean back a little bit, but DO NOT rest your weight against the toilet tank (don't push the tank off its pedestal --- or you'll have a whole new set of problems). Leaning back seems to straighten out the curve in the j pouch, and gravity hopefully will take over. I've also read that moving gently side to side while on the toilet can help "shift" the contents of your pouch and get it moving. (You can post new messages by clicking on the bright green banner at the top right of the page.)
Wrong diagnosis originally?
I had radiation for a rectal tumor before surgery and my j pouch failed, was it related? probably. I would say that after radiation it is probably best to go with an ostomy, the data points in that direction. One thing we know is that the small bowel is much more sensitive to radiation than the large.
