I just ran across your post from two years ago and am very curious to know your outcome. I had my cystectomy August 2018, with neo bladder. I too have never gotten to use it properly as I never got to stretch it at all. I am totally incontinent and have proven I have a fistula that leaks into my vagina. They kept trying to find it to fix, but it is in a spot they cannot see it. I also had a failed sling surgery in the interim when they were still thinking my incontinence was due to my shortened urethra from the cystectomy.
Now on April 26th 2019 I am having my Neo bladder re-routed to the Indiana Pouch. Did you have that done? I am curious to the success and if the surgery was risky/difficult for the surgeons. My surgeons are telling me it is hard to see with all the scar tissue from the first surgery. Thanks if you have anything to offer. I'm very nervous about this surgery but also anxious to be dry for the first time in a long time. My leak is not a small dribble but a constant flow, sometimes gushing. Makes it difficult to have any QOL. I go through a ton of pull ups, pads etc every day!
DX:11.2017, TURBT 11.2017 and 12.2017 to determine stage. (1) Papillary HG. BCG - 6 rounds 2.2018. BC clear 3.2018. BCG- 3 weeks 5.2018. Reoccurrence & TURBT 6.2018. (4) papillary HG & (1) CIS tumor. Cystectomy August 15, 2018 (Neo Bladder) Incontinent /fistula-so had urinary diversion to...
Camille welcome to our community and congratulations on your NED's. We have not had anyone with a fistula in a while and not one exactly like yours. But we have had people who have had a conversion done for one reason or the other. They have gone on to do well and seem to have no more complications than a standard RC but of course everyone have there own issues. I have an Indiana if you end up having a hybrid and there is anything I can help you with remember I am here. It sounds like you are going to one of the best so you are beyond the curve and going in the right direction. Good luck and keep us updated on how you do. By the way I am in the Berkshires of MA not far from you.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Hi all, I'm new to the site. I'm an active and otherwise healthy 51 yo female living in CT and was diagnosed with pT3n0m0 bladder cancer in Jan 2015. After several months of gem/cis neoadjuvant chemotherapy, I had an RC, full hysterectomy, and a neobladder. Dr Joseph Wagner at Hartford Hospital. Unfortunately had a Neobladder-Vagina fistula directly following the RC. I've never had a chance to use the neobladder. Due to complete incontinence due to fistula, I've had foley and SP catheters in dwelling since the surgery over a year ago. Two attempts to repair fistula with an expert surgeon at NYU Langone failed (9/15 and 4/16). I am now going to do an uncommon conversion surgery to a new urinary diversion - either the Ileal Conduit with external stoma/bag or a continent catherisable internal pouch (Indiana or other type). Dr. Bernard Bochner at Memorial Sloan Kettering CC in New York City will be doing the surgery. Anyone have any similar experience or current situation? Either with fistula, or with complications due to neobladder? I'd also like to hear of complications you've had with Indiana Pouch and/or Ileal Conduit choices. Best news is... my one year CT Scan a couple weeks ago was NED. Grateful EVERY day. Thanks!