Neobladder Replacement vs. Stoma

Posted by kwagner @kwagner, Sat, Jan 18 1:53pm

My father had his bladder replaced with a neo bladder 19 years ago. His doctor recently found tumors inside his neo bladder and the walls are too thin to use the neo bladder anymore. The only option he was given was to remove the neo bladder and put in a stoma, my father is a bit of neat freak and refuses to have a stoma even if it costs him his life. Are there any other options after you already a neo bladder and out lived it?

Hello @kwagner, welcome to Connect. I'd like to invite @veteran, @marcia_pez, @johnmclaughlin and @madebacco to this discussion as they have all talked about neobladders on Connect. Members on Connect also discussed the reconstruction a bit here, https://connect.mayoclinic.org/discussion/bladder-and-prostate-cancer/.

@kwagner, it sounds as though your father has made up his mind as far as getting a stoma. Is it the cleanliness of it that is the only thing holding him back or is it facing another surgery, recovery and learning a new way that also is playing in to his decision?

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I believe it is the cleanliness and quality of life. When he was diagnosed with cancer 19 years ago, the doctor gave him 1 option, a stoma. He met with over 20 doctors before he found one that would give him a neo bladder. Now the neo bladder is worn out and he does not have intestine to make another. He has surgery at the end of this month so they can do a biopsy on the tumors in the neo bladder.

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Hello @kwagner. I have a sense of your father's ambivalence about a stoma from my father's experience. He agreed to have a stoma installed after his bladder became inoperative from surgery for benign prostatic hyperplasia (BPH) when he was in his early 80s. The stoma was installed in his abdomen and drained into an external bag. The arrangement served him well — despite the inconvenience and the cleanliness challenges — until his death at age 95, mainly from dementia, which had previously claimed his mother and his only brother. Throughout more than a dozen years at the end of his life, his good humor and balanced outlook survived and made his last years comfortable for him and inspirational for me. I wish your father the best in his effort to match the goals that carried my father to his final rest. Martin

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My husband had bladder cancer and also had a stoma after they removed the bladder. It is scary at first because it is something new (I had to take care of it for him since he was also very sick with COPD) but after a month or so it just becomes a new routine. He lived another 12 years with the stoma and it was the COPD that killed him.

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@kwagner i can only imagine your dads frustrations with the non functioning neo bladder. What is he doing now while he thinks about his options? Maybe the urologist could connect him with someone who has a ureterostomy or urinary stoma so he could learn about it first hand

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Good morning @kwagner
I’ve been wondering what your dad decided. Is he going to go with the urinary stoma? These decisions are so difficult to make. I’m sure that with your help, he will be able to adjust to anything. Will you let us know what he decided and what he has had done?

Liked by Lisa Lucier

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I was diagnosed with stage II bladder cancer and going through chemo right now. Then, they will be taking my bladder. I have to decide which surgery I want. Being 53, I will be living with this for a long time, God willing. I am so glad i found this group. i welcome anyone's thoughts or knowledge on the pros and cons of neo bladder vs stoma. This will be hardest part for me, as i am very active like to swim, long rides on motorcycle. Can I expect the bag to leak and always have to have a change of clothes? How does the neo bladder affect your bowels which I also deal with constipation a lot of the time? Thank you to all! I know I will find great support in this group with others dealing with the same issues.

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@pameladstone

I was diagnosed with stage II bladder cancer and going through chemo right now. Then, they will be taking my bladder. I have to decide which surgery I want. Being 53, I will be living with this for a long time, God willing. I am so glad i found this group. i welcome anyone's thoughts or knowledge on the pros and cons of neo bladder vs stoma. This will be hardest part for me, as i am very active like to swim, long rides on motorcycle. Can I expect the bag to leak and always have to have a change of clothes? How does the neo bladder affect your bowels which I also deal with constipation a lot of the time? Thank you to all! I know I will find great support in this group with others dealing with the same issues.

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@pameladstone Welcome to MayoClinicConnect. We’re glad you found us. You know we’re not doctors, but a community of people who share their health experiences, give support and information. Others on here have shared their experiences with neo bladder vrs stoma. What have the doctors told you about bowel problems following surgery?

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I think the “neat freak” aspect needs to be quickly addressed . That’s his characterological issue affecting his health. If possible have him meet with Kathy, an RN, who worked with Dr. Heidi Nelson at Mayo R. She called me twice a week the summer before my surgery. Extremely knowledgeable and empathic. I believe her last name is Schwenke (moderators) and there are the excellent group of nurses that run the stoma therapy clinic at Mayo R.

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@pameladstone

I was diagnosed with stage II bladder cancer and going through chemo right now. Then, they will be taking my bladder. I have to decide which surgery I want. Being 53, I will be living with this for a long time, God willing. I am so glad i found this group. i welcome anyone's thoughts or knowledge on the pros and cons of neo bladder vs stoma. This will be hardest part for me, as i am very active like to swim, long rides on motorcycle. Can I expect the bag to leak and always have to have a change of clothes? How does the neo bladder affect your bowels which I also deal with constipation a lot of the time? Thank you to all! I know I will find great support in this group with others dealing with the same issues.

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@pameladstone i had urostomy two year plus ago. I have stoma. I haven't tried swimming but I do hot yoga. 99 degrees. The sweat does not affect the integrity of the seal. Took me a while to be uncomfortable with taking a shower. Showers are ok for me. I know that urostomies save lives.

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