@spotdog I can only imagine how tired you are dealing with this. It is great to be cancer free but you have issues that are very hard to live with. I am assuming that you have tried various antispasmodic medications for the urgency issue with no improvement. My husband ended up with a neobladder surgery to remove bladder due to continuous recurrence of tumors. While he must self catheterize 3-4 times a day, he is satisfied with the outcome and has only minimal incontinence at night. It was a massive surgery with complications. He just did not want an ostomy.
You have seen this ileal conduit surgeon, but have you had an opinion from a referral to a large referral center/teaching hospital/cancer center to determine that there are really no other options than cystectomy to relieve your symptoms? Are your symptoms all secondary to the initial surgery or due in part to any of the followup treatments? A good question for your medical team or a referral doctor.