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I had my jpouch connected in oct. Even for the week i was in the hospital i knew something wasnt right. It still isnt. I cannot eat without huge cramping and huge gas which i never had...i cant sleep because every single time i do i have accidents. I have lost over 30lbsto since surgery. I want it removed and my permanent ostomy rebuilt. I was able to eat and my quality of life was good. Now??? I can never leave the house and...most times..im in bed. Is it possible to get it removed? Please reply asap here or through my email which is fairydust1595@gmail.com
i cannot wait to hear from you as i am getting desperate.
thanks
allie in nj

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Allie,
Have you had follow up with a GI or surgeon? This is not normal. You could have pouchitis which may be causing your nighttime accidents or irritable pouch. They have medications that can help you like lomotol, immodium, metamucil or antibiotics if needed for pouchitis. You should not be losing this much weight. I would call my surgeon or GI. Maybe you can try some other options before having the pouch permanently disconnected.
J
Yes, what treatment are you taking for these symptoms? Knowing what you've tried will help us give you some ideas.

But, if you have tried everything and are completely miserable, yes, you can return to the ileostomy. But, this soon after your surgery, you may find it difficult to find a surgeon willing to do it. They like to give it a year minimum before giving up. The fact that you are continent during the daytime is good news, and the night time incontinence could resolve over time, especially if you have treatable issues, like pouchitis.

Jan Smiler

P.S. I recommend that you remove your email address from your post (you can edit by clicking the eraser/file icon in the bottom right corner). Posting your email address in a public forum just invites spambots to flood your mailbox. People can send you a personal message through the messaging system here.
Jan Dollar
Sorry you are going through this. Just another thought, has your GI ruled out a bacteria overgrowth. I had such painful cramping and gas that I couldn't release not too long after my takedown. 2 weeks on Xifaxin made a huge difference for that (although I have so many other different problems I'm dealing with. Good luck, I know it is hardFrowner
V
My surgeon hasnt been helpful at all. I have every otc gas relief stuff. I thought relieves means takes away...but w me it just moves it around. I was in the er yesterday. I do have slight pouchitis and am on flagyl. My blood pressure was low. They did a ct scan and the contrast made my insides so horrid and it kept flying out over and over. I even try cutting myself off from eating and drinking by 7ish. Nothings working. Granted the pain doesnt last all day but only when i eat. I just dont think the pouch is gonna work for me.
P
What concerns me is that this may not be pouch related per se, meaning just because these symptoms began after your pouch surgery, it does not mean the issue is with your pouch. I would not be surprised if it is adhesions, and not your pouch, that are causing the symptoms. Adhesions would not show up on the CT unless they were causing enough of an obstruction to dilate the intestines. The problem is that surgical release is pretty much your only answer. I presume you have tried Pepto Bismol?

I don't think that stopping eating early is particularly helpful, as it can just make your gut churn and groan. Switching to 6 small, frequent meals, instead of 3 can make a difference. This keeps the load on the gut small. Plus, avoiding all roughage can help.

Jan Smiler
Jan Dollar

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