Scheduled for cystectomy with ileal conduit: What can I expect?

@ken17, I pulled your question into a discussion of its own so that members like @mscheib2 @sue225 @ggarrepy @katydid77 @spooz2 and others can share their experiences and tips for what to expect with an open cystectomy with ileal conduit.

You might also appreciate this discussion that @sue225 wrote back when her husband has the same surgery.
- Radical Cystectomy: Would like to hear the experiences of others https://connect.mayoclinic.org/discussion/radical-cystectomy/

Ken, when is your surgery?

@colleenyoung
My surgery is scheduled for May 4 at Mayo Phoenix. Not having any adjuvant therapy before the surgery

Hi, Ken. I'm a 78 year old woman, but other than that our situations sound similar. I live in a large city and have gotten all my medical care after my first TURBT at our excellent teaching hospital here. Surgery 3/23/25 went well, and I've had no complications from the stoma itself, although finding the right products was a "thing". the two ostomy classes I was required to attend before surgery were quite helpful, as were the stoma nurses afterwards as I struggled with products.
But I had a number of "issues" to deal with post-release. Not to say you will, but it's an example of how "stuff happens". And again, I was in excellent health to start----on no medications, enviable blood pressure/cholesterol numbers, no weight issues, fit. Just bladder cancer that had been treated as UTIs for far too long.
First I had two brief episodes of heart arrhythmia my day of discharge and was put on a heart medicine that I turned out to be horribly allergic to (I think the arrhythmia was caused by all those fluids changing my electrolyte balance, but who knows?). But now I have to have regular cardiology visits. Next was relentless and copious drainage from the JP drain site in my torso. Got me to the ER twice, and readmitted once, and was incredibly unpleasant. After about two weeks it eventually diverted and became vaginal discharge, and that was more manageable although still unpleasant. It lasted for months.
My left leg swelled up after my first TURBT and the right one did so after surgery. Turns out I had five clots in my left leg (one still remains and I'm on Eliquis). I had 12 pelvic lymph nodes removed in my cystectomy and was at risk for lymphedema, so I saw lymphedema specialists for awhile. Still wear compression socks and elevate my legs, as a precaution.
Then there's the issue of vaginal prolapse. Not going to be your problem, but again, it was an unforeseen complication. The pelvic floor specialists were great.
But the important thing is the surgery removed all the cancer, as best they can tell. I just have to get occasional scans to be sure and drink gallons of water. With BCG, I'd have worried that I'd be unlucky and would end up needing the cystectomy eventually, when I was older and less able to handle it. The urostomy bag is a nuisance, but manageable. And I'm fine now.

I'm probably an outlier when it comes to complications. Good luck to you and hang in there.