What's life after neo bladder surgery like?

  • 4 replies
  • 44 subscribers

Aimed at females.

  • Hi, I had mine 12 years ago age 57. Having talked to a couple of local patients & browsed forums ike this, I wasn't especially keen on either option, both seemed to have pros & cons. In the end I plumped for neo for various reasons. Like you, I had a commute to London (two days a week), and was doing a job in which it wasn't easy to stop for a toilet break at short notice. I felt that the stoma bag would need emptying more often than was convenient. 

    With neo, it is more complex surgery so you need an experienced surgeon. You have to be prepared for a return to hosp after a couple of weeks or so (depends how things go/hosp protocol) to 'activate' neo. Then you are likely to have intial incontinence while learning to use neo (sense when full & technique to empty) & stretch it to a useful size. This can take weeks, with months to get good control, with lots of measuring intake/output, wearing incontinence pads.  There is a risk of needing to self catheterise to fully empty - I do this, but it doesn't bother me at all. The worst aspect for me is having to get up at night to empty. I hate setting an alarm & rely on sensation, so still wear a pad at night for leaks. Otherwise I am very happy, can fairly well predict when I will need to empty and can time toilet visits to suit. 

    Really it depends if you want the quickest, easiest solution, & have the bag, or are prepared to put the effort into training, with more risk of complications (including metabolic issues) to have closer to normal function. With either option, you wil be able to do same as before.  Best wishes, hope all goes well.

  • Very interesting to read, I appreciate your time and effort to feedback. I've already had the most tough year battling on with a shattered hip and femur which is still not healed. Possiblity that I will need further major surgery on my leg to get it to heal. Quite honestly don't know if I have the energy to cope with the neo. 

    Sounds as if you dealt with it brilliantly - well done!

    Many thanks

    C x

  • I am managing the stoma bag without much bother.

    The bonus for me and many others is that we don’t have yo get up through the night.

    It seems as though you already have plenty to deal with.

    You are the only person who knows what you can, or are willing to, take on.

    Good luck! Shamrock


  • Thank you  , I also have three children with the youngest only 7 so I'm still doing the school run twice a day and running the teenagers around!

    Appreciate your reply.


    C x