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indiana pouch conversion to artificial urethra from stoma?

1 week 4 days ago #54155 by mammoth3128
indiana pouch 3/17 ucla, Dr. Raz, kind of an international legend. non invasive hi-grade, 3 turbos,15 bcgs but continued recurrence. unfortunately had a minor invasion of the urethra so no neo but Indiana. revision aug 22, previously was having more and more pain on catheter insertion. Pain is gone after revision but leaking is as bad as ever. Very physically active, tennis, gym, skiing. latest ct shows no issues from pancreas to pelvis. Scheduled for 2nd revision to further tighten stoma significantly Nov 28.
scott

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2 weeks 4 days ago - 2 weeks 4 days ago #54123 by Cynthia
I have had an Indiana for ten years, I have a pretty good information base but have never heard of a conversion to an artificial urethial stoma I found this article and am assuming this is the procedure you had. So this is a first as far as I know on this forum. I wish I could be of more help but in this case you are the teacher here. I am assuming also that you had the revision due to your Indiana leaking? I would be very interested in learning more if you would not mind sharing.

https://www.ncbi.nlm.nih.gov/labs/articles/1638370/

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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3 weeks 4 days ago #54095 by mammoth3128
Any info on this is appreciated.
NON INVASIVE BC, 3 turbts, 15 rounds of BCG. Indiana pouch March of 2017 By Dr. Raz of UCLA. other than leaking minimal issues. some UTIs. Revision done August 22. Still experiencing leaking. Found a fairly good day time product Holliste Stoma Cap with filter, ref# 1796
Thanks, Scott

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