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Someone post the name of a doctor in Cleveland who did a surgery n them.  The comment that sticks out in my. Ind is that he/she will only do a repair if there is a 90% or better success rate.

 

mas everyone knows Jeffrey had his pouch reversed so he could be on complete bowel rest.  My surgeon has referred us to Cleveland.  We are going to speak with Dr. Remzi about next steps but I think I understand he only does redo's of the pouch.  I would like to explore other options before going to that drastic step.  We have been tole that Jeff does not have enough small intestine to do a redo.  Apparently his small intestine is smaller than average and the mesentary, I probably spelled that wrong, will not stretch any further.  So I would also like to meet this other person while we are out there.  Thank you.

 

 

Last edited by Jeffsmom
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HI there,

 

I was the one who posted this. My comment, however, was i told my surgeon that if when he had my pouch in his hands, and did not think with 90% certainty he could fix it, either remove it, create a new one, or give me permanent ileostomy. All items outside of the permanent ostomy required 90% in my favor, otherwise i was done.

 

I was mentally prepared to wake with a permanent ileostomy. I was shocked to be woken 90 minutes later with the news that he fixed my leak. I was stunned. My surgeon is Dr. David Dietz.

 

I will find out in 2 days (Thursday) if all is good. If so, take down 
#2 is Monday, March 30th. I will keep you updated.

 

Derek

Derek, thank you for responding.  Funny thing, I went through all my posts and found it this afternoon.  Good Luck, I hope everything works out for you.  My son is kind of going through something similar.  In December, they found an abscess, huge, rare fungal, unidentifiable, they said.  How lucky can you get!  In Jan. They found the fistulia and immediately put him in the hospital and started TPN.  Didn't work.  Two weeks ago they reversed the j-pouch and put him back on the ostomy.  Oh, there is a micro tear in the pouch.  They can't find it or see it.  Dr. Thinks it may be where one of the stiches are.  I had our surgeon speak with Dr. Remzi before the surgery.  My understanding is that Remzi will just redo the pouch rather than repair.  A redo is not an option since my son's small intestine is smaller than most.  Really, I can't make this stuff up.  So I wanted to perhaps have a consult with your guy if we need a repair.  I understand that the redo is a horrible surgery and extremely painful.  My son doesn't handle the pain real well so I'm against the redo.  Hopefully, we won't have to worry about all of this if the fistulia goes away and the micro tear heals Itself, but I'm just planning ahead.

 

but thank you for getting back to me and good luck to you!

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