@sansman and @budisnothome, I thought you might also appreciate this related discussion in the Kidney & Bladder support group:
- Radical Cystectomy: Would like to hear the experiences of others
https://connect.mayoclinic.org/discussion/radical-cystectomy/
There's also an ostomy support group here on Mayo Clinic Connect if you want to talk to others:
- Ostomy support group https://connect.mayoclinic.org/group/ostomy/

Sansman, did you decide whether or not to have a cysectomy?