Neo Bladder Urostomy bag Resivour which one?

3 years 5 months ago #59980 by wvdavidleroy
Replied by wvdavidleroy on topic Neo Bladder Urostomy bag Resivour which one?
I had the choice and chose the pouch and my surgeon said I made a good decision. Was explained that the hospital stay would be longer and other pros and cons. Hate that for you. Hell to go thru huh? Leaving the tubes in the kidneys hit me because when they took mine out I left the hospital to drive home , made it about 30 miles and had to go back I was in so much pain. Lower back , kidneys. Still a problem if I have to stand on my feet very long but not a problem hiking or walking for miles. Can't imagine the problems after 4 months. They left my chemo port in for 10 years until they could no longer get a blood return. They had Hell removing it but boy was I glad when it was gone. Hang in there!!

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3 years 5 months ago #59978 by TOMCAT
They removed my bladder 2 years ago I went with the Neo bladder ..Very rough and painful surgery .
I spent 13 days in the Hospital .I was care flighted twice back to the hospital Because I had Mucus backing up. I now have stage 3 Kidney disease ..Because they had to leave the tubes in my kidneys for 4 months ..I would not recommend the Neo Bladder .

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3 years 7 months ago #59774 by wvdavidleroy
Replied by wvdavidleroy on topic Neo Bladder Urostomy bag Resivour which one?
I've had a pouch now for around 12 years. No big deal. As my doctor told me it's just a life style change. Takes awhile to get the right appliances at first. Takes me about 30 seconds to slap one on. I was about 52 when I had the surgery. I wasn't thinking about dying even though I nearly did but I didn't like the incontinence part. Living with a neobladder to an older age and you have to adapt to other muscles to urinate , those muscles are not going to be very good and if you are active you are not going to be able to control it all the time. I don't work anymore but volunteer driving transports for the Humane Society. I can drive and drive and drive and never have to pee.
The following user(s) said Thank You: Sarge73

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3 years 7 months ago #59627 by joea73
I still have a bladder, so I am not really qualified to speak from my personal experience.
But, I have been attending a bladder cancer patients' support group for about 3 years and have known people
who chose neobladder, ileal-conduit, and Indiana pouch. You have mentioned that you have read pros and cons.

Considering your age and your quality of life after the surgery, the consensus among many postings is that neobladder should be the first candidate for younger patients like yourself.

Since you are 47 years old, you will live another 43 years if you live till 90. So, Ileal conduit requires the replacement of a urostomy bag every 3-5 days, that's like 100 times a year or 4,300 times till you get to 90. Indiana pouch you need to catheter 5-6 times a day. That's like 1,700 times a year or 70,000 times till you get to 90. Though both urostomy bags and single-use intermittent catheters are covered by Medicare plan B, the lifetime cost also needs to be considered.

Most patients who chose neobladder become continent during the day time though it requires training. At night, some patients may choose a device like a condom catheter so they can sleep through till the morning and some train so they can wake up every few hours to go to a bathroom. Yes, some patients who undergo neobladder may become hypo-retention which requires self-catheterization. But I have heard from a urologist that the risk is less than 5%.



Best wishes

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3 years 8 months ago #59610 by sara.anne
Replied by sara.anne on topic Neo Bladder Urostomy bag Resivour which one?
This is certainly not what you wanted, but it is important to remember that many patients lead full lives without a bladder. We have had members on this Forum who drive race cars, climb mountains, and scuba dive!!

First, if you haven't seen it, here is a link that very succinctly describes the options for a diversion: (copy and paste this into your browser)

my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction--diversion

Second, there is a lot of information from others who have been where you are on this Forum. Use the "Search" function at the top of this page to look for the various diversions.

Best of luck to you

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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3 years 8 months ago #59608 by MConn
Going through my second round of bladder cancer. This time is has moved into my lymph nodes and doctor recommends removing bladder. I'm 47 years old and up to this point have been a very active outdoors person.
I'm just becoming overwhelmed by all of the pro and cons that I am reading on everything. wanted to get some input from some that have had each procedure. pros, cons, recovery, quality of life.
Thanks!

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