Been waiting several months for Shen to do this procedure to try and close this jpouch leak. Giving 50/50 shot. New larger bear claw and a modified fibrin glue. Fingers crossed and looking for prayers. Surgery 10 months ago to close did not work.
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Poucho, best, best, best wishes! Please let us know how it goes for you!
- John
The best of luck. I'm hope this works for you. Jeffrey has a similar issue and we were supposed to see Dr. dietz, but now with the PSC diagnosis, the transplant doctors want everything done at Weill Cornell. My understanding there is a doctor at Cornell that trained under Dietz, so I'm hoping he is as good, but I'm still keeping Cleveland as an option.
i so hope this works for you! It would be nice to hear some good news for a change! Praying for you!!!
dianne
Oh no, not again 
I wish you all the best as you have had such a bad time with that leak! Sounds like it's been so long that a new procedure has been developed.
Good Luck!
Well, the procedure went well, but the question is if Shen was able to get enough Fibrin glue to the leak. Because it had to travel a far distance through the catheter is began to freeze up. He said he was able to get some in there but not as much as he would have liked. I have to go get one of the dye/enemas in 2-3 weeks to check if leak is still there. I honestly dont feel good about it. He said he has one more trick up his sleeve we could try if this didnt work but he needs to look into it a little more. There is another type of glue that they use for varices(bleeding veins).. I told him I was his guinea pig so....
Pouch, you sound like Jeffrey. Where is you leak? Do they know what part of the pouch?
im going to assume it is not on a seam line Because that would be way too easy. And why should anything be easy! Good luck
its at the tip of the jpouch, at the very top
I hope it worked and you don't need to go through any more tricks. He sounds determined to fix it.
I just emailed my surgeon to get his thoughts on this other type of glue, I'm just curious on what he thinks. Shen has tried everything. He has told me I am his most difficult case ever. But I agreed to be his guinea pig. Not only am i trying to fix myself but others who may have the same or similar issues like mine. I will not have a redo, too much hell my body,mind, and finances went through. I am hoping if the fixes dont work I can just stay as is with my loop ileo and disconnected jpouch.
Sorry about the news, Poucho -- really wished this was fixed for you!
no news yet. I wont find out if it worked or not till i have the barium xray on July 24th. I dont think it worked but wont know for sure until then
Let's be positive! I so hope it worked for you because then Jeffrey is the next victim !
