Hi Camille-
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...