1st Post Surgical Appt. after neobladder

5 years 9 months ago - 5 years 9 months ago #51862 by eddiek
Replied by eddiek on topic 1st Post Surgical Appt. after neobladder
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

Edward J. Kinsella
American Bladder Cancer Society
Board of Directors - Secretary/Clerk

& Caregiver
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5 years 9 months ago #51859 by bignell
My husband(58) had his bladder, prostate, seminal glands and lymph nodes removed and a neobladder made out of his intestine on 7/25/16 at the Hospital of the University of Pennsylvania. He ended up with an ileus and stayed in hospital for 13 days. After his release, he went back for a pouchogram, to have the staples removed, etc., He ended up with a wound at the lower end of his incision site and that is still being packed and cleaned every day since 8/15.

We have our 1st follow up appt. with the surgeon this Friday. We have so many questions in regards to the "training" of he bladder, which is very slow going at this point and very frustrating for my husband. Questions about his wound, how long will that take, etc.Questions about the biopsies.

If anyone who has been through this could provide some of the questions we need to ask, that perhaps we are overlooking, it would be greatly appreciated. Any and all are welcome.

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