Neobladder Replacement vs. Stoma

Posted by kwagner @kwagner, Jan 18, 2020

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?

@engelee

I totally understand about his worry, since I’ve had urostomy 41/2 years. It will happen; have plans that he’s thought through. Watch for early signs of pending leakage ( bubble around tape), always carry total new urostomy equipment in small bag, have a bath towel in car in case happens while driving, I like dark pants because people don’t notice leak until you can remove yourself. When go to empty bag ALWAYS check wafer for any problems.Monitor fluid intake if not going to be around restroom, keep it low. Just tell people you need to excuse yourself.Keep hand over wafer when putting on for a minimum of 10 minutes ((don’t fudge). Be strategic about wherhever you are going. I promise nobody has noticed me springing a leak all these years.

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Thanks for your reply. We will take your advice and be glad of it.

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@katydid77 You got some great advice from @engelee ! I would also suggest checking in with the urologist’s office to find out which ostomy nurses they work with. It may be that the fit is incorrect. A few extra tips on fitting the appliance won’t hurt either. Please stay in touch and tell us how things work out

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@katydid77

My husband recently had a urostomy and is struggling with pouch leakage. He is trying to stay active but lives in fear of leakage while in public. Will we ever feel secure/self confident again?

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Depending on how often your husband empties/changes his pouch and how much hair he has on his tummy can cause the leakage. Finding a good ostomy/urostomy nurse and spending time on your computer finding out everything you can about applying the pouch may help. I have an ostomy so I'm only guessing about your husband's needs. Body hair could be a problem, which may have to be another place to shave when changing his pouch. Good luck,
mlmcg

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My concern about shaving is creating or exacerbating irritation under the wafer. I would call the Stoma Clinic at Mayo, Rochester and ask to consult with one of the nurses before shaving. I think there are quite a few risks involved with this recommendation and would start with the best advice from stoma nurses at Mayo mentioned above.Call general Mayo # and ask for stoma Clinic on Gonda 9.

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I've had a urostomy for now 5+ years. I was given the neobladder option and elected not to have it because of the lack of nerves which necessitated wearing adult diapers, which i refused to do. The ease of having a urostomy are: road trips are easy due to pure volume control; reliability of the adhesionsupplies grows each year; visibility for changing wafer and pouch is readily observed. I would not have any other option.

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@jshollett

I've had a urostomy for now 5+ years. I was given the neobladder option and elected not to have it because of the lack of nerves which necessitated wearing adult diapers, which i refused to do. The ease of having a urostomy are: road trips are easy due to pure volume control; reliability of the adhesionsupplies grows each year; visibility for changing wafer and pouch is readily observed. I would not have any other option.

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@jshollett, welcome to Mayo Clinic Connect. I appreciate hearing about your success and satisfaction in choosing an urostomy 5 years ago. Might you have some tips about preventing pouch leakage for @katydid77?

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