Indiana pouch

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Looking to hear from anyone who has had their bladder removed. I have stage 3 non invasive bladder cancer. Bcg and chemo have failed. Been going through this for many painful years. My doctors are recommending removal of my bladder. I have a new high grade tumor.

Love to hear from someone who has had the surgery 

Rhonda

  • Rhonda,

    There are many on the forum who have had their bladder removed. Mine was removed a couple of years ago as the tumour was muscle-invasive. I have a stoma and use bags. I'm back to normal now and being checked regularly. Some have a neobladder but I went the bag route.

    Macmillan has a very good booklet explaining the operation and I recommend you take a look at that. It is a big op lasting 5 or more hours. They usually use a robot to do it and you have to be fit for them to do it. 

    Having a stoma can be difficult for some people to accept but I had no choice and accepted that from the start. It's not nothing but it is liveable.

    All supplies are delivered on request and there are stoma nurses who give excellent support starting from the time they are planning the op and ongoing as needed.

    People can live for years with stomas so all in all I recommend it. I'm sure your doctor will have thought what would be best for you in your situation. I suggest you read up on it (don't just Google at random, look for reputable sites eg Cancer research, NHS, Bladder Cancer charity then ask your doctor some informed questions.

    Good luck. I'm sure others will respond soon

    Latestart

  • Rhonda, I am a BCG failure , the treatment worked, but trashed my bladder. So no option but a RC. I went for a stoma, tried and tested. The operation is major surgery, and carries risks, but for me was the only game in town. I am glad I had it done and am on the long road to recovery, so far so good. 

    I have heard some negative press about neobladders - it extends an already long operation, is more complex surgery. But you should do your own research.

    if you have any specific queries ask away.

    Leo

  • Hi  

    I had my bladder removed 4.5 years ago but have a urostomy, not an Indiana pouch so it’s very different. I have friends who have the Indiana pouch, but they are in the States, not the UK, where the procedure seems to be done more routinely.

    Most of us in the group here seem to have either a urostomy or a neobladder, but I hope you’ll find someone who has gone through the Indiana pouch procedure so will have a similar experience to help you. 

    Sarah xx


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  • Hi Rhonda,

    When I replied last night I forgot to  explain why I decided against the neobladder (and by extension the Indiana pouch, which was not then mentioned). That was because I felt there is a high likelihood of introducing infection via catheters used so often to empty the urine. And my desire to have as few antibiotics as possible. With a stoma, being external the likelihood is less. Haven't had any yet.

    I also didn't want to have to 'train' a neobladder though I understand the pouch is bigger. I drink 2ltrs of water daily as instructed and empty my bag hourly during the day and sleep through the night while producing 1.5 less of urine.

    Hope this is useful

    Latestart

  • Latestart, my stoma nurse says she has never had a client with a neo that is continent at night. They might exist, but she has not encountered. Leo

  • Leo, I've  never aasked my nurse but the amount neos hold wouldn't be enough for me, nor, seemingly the Indiana Pouch. I wouldn't swap a good night's sleep for anything.

    And during the day, if I'm going somewhere that means no loo to empty into  for more than say an hour and a half I use a leg bag too - not very often but it was v  useful at the O2 for Elton John just after my operation.

    Latestart

  • I'm female and have neo. I was interested in Mitrofanoff (the UK equivalent of Indiana pouch) but my surgeon advised against, as more likely to need surgical revision in the future. 

    You need to work to expand the pouch, same as with neo, but you always use a catheter to empty the pouch, whereas with neo, if all goes well, you empty voluntarily the normal route. Some, like me, have problems doing that. I can empty partially, but always self cath to fully empty.  The pouch require using the longer male catheters (not quite so convenient to carry around), but females with neo use a shorter catheter. 

    Recovery in either case is probably about the same. Happy to answer any questions. Best wishes.

  • Hi Rhonda,Welcome to the group.I had bladder removal  just over 5 yrs ago and have a stoma which has been fine.There is support and advice on here to help you through your surgery.Jane x