Hello bignell,
Remember that a radical cystectomy (RC) is major surgery and it will take several weeks to reach a “new” normal.
Cynthia’s has an Indiana pouch which also needed to be “trained.” During the early stage, she needed to void every couple of hours. Training is a “24/7” process, so I made a schedule and also purchased several inexpensive alarm clocks; each set to different time for overnight. If you have a smart phone, I would suspect that it might have a built-in alarm that you could use. As the capacity of the Indiana pouch increased, the corresponding void time is also increased. This can take several weeks before adequate capacity can be reached.
An Indiana pouch is different from a neobladder, but I suspect they’re similar enough from a “training” perspective. However, make sure to discuss “training” in detail at his appointment with the surgeon.
Cynthia also had a portion of her incision that didn’t fully close. So I learned how to take care of the surgical sight and would pack the wound and change the dressing as needed. It took several weeks for the wound to fully close and heal. Again, make sure that you discuss this with the surgeon.
Also, following RC, the intestines will be adjusting from the prep for surgery, the surgery, and the recovery.
We found that frequent, small, easy to digest meals were better than fewer large meals; 5 or 6 a day, more like "snacks." Foods like eggs or buttered pasta are good; even Jello or shakes.
Intestinal pain during recovery is not uncommon, so avoid foods/beverages that would normally cause digestive problems; bland is probably best, just like if a patient was experiencing a GI virus or "flu".
Moderate exercise helps with the recovery process, so make sure that he keeps going.
Lots of fluids are also good.
Recovery can be a hectic, often frustrating time, but hopefully each day will be better than the previous one.
You and your husband will be in our thoughts, so please keep us posted on his progress when you are able.
Ed Kinsella