× Click on New Topic to start your post

Neo Bladder Urostomy bag Resivour which one?

3 weeks 6 days ago #59774 by wvdavidleroy
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.

Please Log in or Create an account to join the conversation.

1 month 3 weeks 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

Please Log in or Create an account to join the conversation.

2 months 1 day ago #59610 by sara.anne
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)

https://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

Please Log in or Create an account to join the conversation.

2 months 1 day 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!

Please Log in or Create an account to join the conversation.

  • Not Allowed: to create new topic.
  • Not Allowed: to reply.
  • Not Allowed: to add Files.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 0 Users and 75 Guests 

Statistics

Today Total Opened: 0 Today Total Answered: 2 Latest User: ecguy
Yesterday Total Opened: 1 Yesterday Total Answered: 6
Total Posts: 54170 Total Subjects: 7106 Total Users: 6677