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6 replies

J-Pouch-small leak

B Beth02Member
Hello, this is the first time I have posted on this site and I want to say that I am so glad I found it. I love being able to read about other people going thru the same stuff. I lived with UC for about 14 yrs and in May 2012 my doctor recommended me to see a surgeon about performing the J-Pouch. In Aug 2012 the surgery was performed about a month later they discovered I had formed a pelvic abs, which required me to have drain inserted to pull out the fluid. I went for my checkup and gastrografin enema and they confirmed I had a small anastomosis leak so therefore I couldn't get the takedown. To make a long story short I have had 3 enemas and 2 EUA's in the OR to try and suture up the small leak. Unfortunately the leak is still there but my surgeons says it is 99.9999% healed. He gave me the options of trying the EUA procedure again and try and suture it again, to get a second opinion and go elsewhere (Cleveland Clinic) to redo the whole pouch, or to just live like I am. I guess my question is has anyone gone thru this? Has anyone had a failed pouch and had it redone? Thanks for reading and I appreciate all input.

Thanks
Beth
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PouchomarxPouchomarxMember
I had a leak before takedown back in 2008, I had the drain from an abcess and got my takedown. almost a year ago Dr.Shen found a hole and MRI determined it to be a sinus tract. He did 2 kneedle/knife procedures to try and incorporate the hole bigger and part of the pouch so it would make change of abcess and infection less likely. Since it was found 4 years after surgery he was thinking Crohns, but my surgeon said the MRI comparison from then and now, the sinus was exact same place as the leak was. He thinks that the sinus basically formed back then from the leak. Shen said if the procedures did not work that he suggested pouch removal or redo. My surgeons opinion is if you have not had issues with this thing abcessing he would just leave it alone rather than go through all those surgeries again unless it is an issue down the road.
I have cuffitis issues and spasms but choose to deal with them rather than surgery again.
L liz11Member
Beth, Here is a link to the "needle knife" therapy that Dr. Shen at CC is doing for leaks at the anastomosis. I understand he has had good success with this; however, it may require many procedures. He told me he has people that have had to have 10-15 procedures, but that it worked, they avoided surgery, and they saved the jpouch.

http://www.ncbi.nlm.nih.gov/pubmed/22390150

Definitely thinking it might be a good idea for you to get a second opinion at CC.
good luck.
PouchomarxPouchomarxMember
NO, I STILL HAVE MY POUCH. those procedures are not cheap! just the procedure is $1600.00, not including the procedure room,labs,supplies,pathology...I have fought with my insurance to pay the actual procedure, they consider it experimental. I had it done twice and could not afford another one. I just now got the Cleveland Clinic to write both of them off. it has been a nightmare and a lot of time and frustration.

I had really bad cuffitis and when inflammation finally went down after a few years, Shen found this sinus. some think it was always there , he just could not locate it until then. NO WAY am I thinking about any surgery unless I get issues like an abcess...knock on wood

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