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Reply to "Does Anyone Else Here DREAD Eating??"

I had my jpouch removed 3 yrs ago, after 25 yrs with a jpouch.  First I had a jpouch disconnection done (the final straw was a septic abscess) and an end ileostomy made.  During the next yr while the abscess healed, I still had lots of discharge from my bottom.  Apparently, this is normal, as what's still there - the jpouch - continues to produce mucous which needs to come out.  I did not always know when the discharge would happen, so I wore pads all the time.

I finally had my jpouch removed along with everything else a yr. later.  I had a "Barbie Butt" done, so everything is closed down there, although my surgeon closed me from the inside and left a small opening for drainage.  (I still don't fully understand this as opposed to a completely closed butt.)  There is absolutely no more urge to "go".   If permanent ileostomy becomes your decision, I'd advise discussing butt closure (wish I knew the technical term for this!) during your presurgical visits.  Butt closure of course, removes all options in the future as far as redos, etc.

My stoma is longer - so very important - that helps to avoid a lot of the skin issues that came with the temporary ileostomy 25 yrs ago.  I never was a big eater, but now I can eat spicy foods and anything else again without worrying about the butt burn!  Food seems to move through me pretty fast, but I have nothing to compare my transit time with.  At this point, it all seems "normal" to me.

Have you talked to your surgeon about removal, redo, etc.?  I'm really sorry you're going through such difficult times, it sounds like a dreadful ordeal.  I'd be happy to answer any other questions.  Best wishes.

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