Dear @ronniek ,
I did have the option but after a few months of not being able to sleep due to increasing urgency/frequency I just couldn’t bear the thought of having to train the neobladder overnight or continued incontinence and the possibility of needing to self catheterize. I also read that it was an easier less complicated procedure. My initial surgeon in NJ wasn’t much help, basically gave me a bunch of reading material to figure it out for myself. I went for a second opinion at a major NYC hospital. The surgeon was quite different and phenomenal. I had already made up my mind about the pouch but he pretty much confirmed my understanding. I’ve had no real issues with the pouch since surgery in 2024 other than some minor skin irritation under the pouch.
The ostomy nurses at the hospital are great and continue to provide support when I have questions. I drink a lot of water so I need to empty the pouch every 1 to 1 1/2 hours and change it every 4 days. I also use an overnight collection bag attached to the pouch so I can sleep a blissful 7 to 8 hours again as long as nothing else is keeping me up. I’m actually more active now than I was the 2 years before cancer and do functional strength training several times a week among other things. Everyone’s experience is different. I only personally know one person with a neobladder from my hospital’s support group. He still experiences some incontinence at night after 2 years but is otherwise doing great. There are folks in this group who chose neobladder with a variety of experiences.
Best wishes !