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Neobladder with Fistula

4 years 3 weeks ago #51483 by Marsha1017
I had neobladder surgery for bladder cancer in 2002. I had urinary retention prior to surgery, so I have had to continue to self-cath. It is very easy once you get the hang of it. Recently I have had air in my urine and my urologist thinks I may have a fistula between my neobladder and small intestine. I will be going to USC in LA on the 27th and I suspect I will have imaging tests there. I also have an ileostomy and seem to have gas in my pouch whenever I have air in my urine. Coincidence? Best of luck to you!

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12 years 1 month ago #18476 by Patricia
Bionic...heres a recent article from the journel of urology by Gary David Steinberg from the U. of Chicago.....
http://www.ncbi.nlm.nih.gov/pubmed/18289599?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=4&log$=relatedarticles&logdbfrom=pubmed
Do not know where you are located but he would be a good one to consult with.
Pat

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12 years 1 month ago #18464 by Gene Beane
Just curious, where was your surgery, and were you offered the Indiana pouch??
WE HAVE SEVERAL ON THE FORM THAT AREN'T GETTING THE NEO GOING VERY WELL, BUT THIS SOUNDS LIKE TOTAL INCONTINENCE FOR SURE. I HOPE YOU FIND SOME RELIEF, Pat will find some good info for you. I am sorry for your situation,its got to get better.....my husband has the outside bag, he is 67, so he figured the easier the better.... good luck...Ginger

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12 years 2 months ago #16795 by Patricia
Bionic...i found this but think probably one of the major facilities with a surgeon who is quite experienced is the way to go........I'll further research it.......
http://cat.inist.fr/?aModele=afficheN&cpsidt=17276245
Pat

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12 years 2 months ago #16786 by bionic bladder
I had a neobladder put in in January and have had total incontinence ever since. I soak a Depends plus an inserted Poise pad about every 11/2 to 2 hours. On Monday I did the tampon fistula test and it came back with orange stained urine soaked on the tampon, I did it twice to make sure I was doing it correctly. My doctor is still of the belief that it is some sort of sphincter dysfunction, but I am completely convinced it is a fistula. Does anyone have any advice on this subject or a doctor that specializes in the fistulas with a neobladder? I do not have cancer I had a hysterectomy in 7/05 and it resulted in a vesico vaginal fistula. I had 7 attempted repairs to fix it, 3 vaginal and 4 abdominal. In October after the last repair failed it was deemed that my bladder had been damaged beyond repair and that my only option was a cystectomy. I was told I was the perfect candidate for a neabladder as I am only 39 years old and other than peeing all the time in relatively good health, although I was much stronger before the 8 surgeries in 2 1/2 years. This has been the only website where I can find anyone with a neobladder for support.

Any words of advice would be greatly appreciated.

Bionic Bladder

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