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Hey all!

My apologies in advance if this question has been asked/answered before. I've been Googling for more than 2 hours and haven't yet found anyone with the exact same situation.

That said, my girlfriend had an ileostomy Aug 21,2013 (take-down surgery for the J-Pouch to follow Oct 24). She's had her share of issues but seems to have nailed down living with her bag for the time-being. Unfortunately the one thing that's been a constant issue is serious pinching pain around the stoma site when it's expelling stool. Every time the stoma squeezes/contracts there's a corresponding pinching pain in the skin immediately around the stoma. At times, it's almost unbearable (the reason I'm on here for her). She feels great in the morning (since she hasn't eaten in 8-10 hours), but the pain comes back within 30-45 minutes after eating.

My guess is that it has something to do with the way her wafer is fitting the skin. She's using the adhesive tape (not the paste) with a 2-piece system.

I apologize if I'm not giving all of the right details, but I'm not entirely sure which ones are most helpful.

If anyone has any thoughts, we'd really really appreciate it. I still can't believe what a great community of folks there are to help others going through this surgery/procedure.

Thanks everyone!
-Mike
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Hi Mike,

I'm sorry your GF is having so much trouble.

I'm wondering if she has been scoped since her take down? I had similar problems when I first had the bag, and also thought it was an appliance problem. It didn't feel like the same kind of pain as with the colitis or pouchitis. But, it turns out, I had a lot of inflammation still left in there. The reason for it is still unconfirmed (the biopsy came back inconclusive, of course), but I have been on a whole lot of anti-inflammatories (Apriso) ever since. As long as I'm on the Apriso, I'm fine. It could be she still has inflammation at the end of her intestine like me, and so when food passes through that part she feels it.

Please keep us informed on her progress!

Rachel
boyfriend,
it does sound like it might be inflammation or adhesions behind the stoma. If that is the case she needs to talk to her surgeon. It may be something as simple as an in office dilation.

If you or she thinks it is simply a skin or wafer thing, you could try an experiment by taking off the appliance and holding a bag or trash can nearby and see what happens after she eats. Maybe the wafer hole is too small?
goodluck. keep us informed so we can help you help her.

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