Hello KathyH514!
I had my radical cystectomy surgery September 11, 2017 - that's 11 weeks ago and I have adjusted quickly with no problems. The surgery was postponed due to Hurricane Harvey. When they performed the surgery, they "injected" long acting pain killer in/around the incision which made recovery possible on just Tylenol for me once discharged from hospital (4 days).I did feel abdominal pain when laughing, coughing or sneezing though. The worst part of recovery was being severely constipated and no appetite first four weeks. If you can't drink Ensure, grab a vitamin and drink a glass of regular milk (or 2%, etc).
The main reasons for my team to discourage the neobladder are: possibility of more complications during and after surgery; women have a higher instance of incontinence than men; the neobladder is made from intestine and will have mucus threads that can block urination; and, a possibility of cancer developing in the urethra (otherwise removed if you get the urostomy bag). Also to consider is that you may not be able to fully empty the neobladder so catheters will be needed. That is not something I wanted to do. Add to all of this, the fact that you have to "potty train" you new plumbing for 9 or more months.
The Indiana pouch requires using a catheter to empty (again not what I want to do), may have more complications than the ileal post-op, leakage, and pouch irrigation due to mucus.
I have a urostomy pouch, but need to try a few types as I had no idea there are so many! I am still getting used to to how much output there is - had no idea I produced so much urine. No one seems to notice the pouch until it gets somewhat full, and even then it just looks like I have something in my pocket. I change the bag twice weekly. I have returned to exercising (moderately) and started training today to hopefully run a 5K in March to celebrate my one year anniversary of starting chemo. That's 16 weeks from now, so wish me luck!
Brief recap - stage IV bladder cancer that was also found in a couple of lymph nodes February 2017. Started chemo March 20, 2017. Had radical cystectomy September 11, 2017. Follow-up with pathology results stated no active cancer found in bladder, but a few cells in a lymph node out of the 24 that were removed. All margins were negative. CT scan at 8 weeks can back good. Monitoring every 3 months with 1st appointment in February 2018.
Sending good vibes, well wishes and big hugs to everyone! Carol