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.

Hi, Anne
Thanks for your note. You seem to be the poster girl for post op complications. Glad you came through it OK. I would be interested in knowing what ostomy products you found.

@annedallas were you offered or did you have the Vlar Labs Vesta test or Natera tumor sequencing ? Thanks and wishing you continued good recovery.

@ken17
Hi, Ken. My hospital starts folks on Coloplast, but that simply didn't work for me---couldn't get a good seal. Thought it was operator error. But the ostomy nurse tried a Hollister CeraPlus one piece bag and it worked perfectly. I can easily go 7 days, with only the appliance---no rings, barriers, powder, or skin protector.
I forgot to mention in my earlier post that through it all, I experienced no pain whatsoever. A friend who had an illiostomy at about the same time has really suffered, but this was blessedly painfree.

@michzn Hi. No, I hadn't heard of either until your question. They weren't sure if my tumors were muscle invasive or not, since there were too many to remove during two TURBTs. Turns out they were not invasive, but that only became known after the bladder was removed. I was totally prepared to learn that the cancer had escaped the bladder.
Are you considering or have you had either/both?

@annedallas
Thanks, Anne. I’m trying to get all the information I can before my cystectomy in May. The Hollister bag sounds great. I’m also pleased that you came through all of this with no pain. Was your surgery open or robotic assisted? My surgeon, Dr Tyson, at Phoenix Mayo, prefers open and I won’t argue. He seems to feel that recovery is not significantly different either way.

@ken17 Hi. My surgery was robotic assisted. My surgeon didn't even broach an alternative. I'm in Dallas (no surprise, given my email) and had my surgery at Clements Hospital, which is part of UTSW.
Will you have a briefing on stomas before your surgery? We had to attend two sessions, and they were helpful, since you are in a daze when you're discharged---it would be a hard time to learn how to handle things.
With respect to ostomy products, the accepted wisdom is that if your stoma protrudes, you're a candidate for a flat wafer on your ostomy bag, not convex. My initial product problems largely stemmed from this truism (plus problems with Coloplast's adhesive). A Hollister phone rep finally urged me to try a convex model, and that's when everything got better. Still don't understand the engineering!! But one lesson is that the phone reps are really helpful!

@annedallas
Hi, Anne. My surgery is scheduled for May 4th. Since I live in Prescott, a 2 hour drive to Mayo. They have me down for a day of pre-ops on April 24. I will have blood and urine tests, Venous ultrasound, CT urogram and stomal therapy, which I assume is instruction for the stoma. You have given me some excellent info and ideas of what to ask the stoma person. Kirsten, my wife will be along as well. She has been terrific through this whole episode.