Bladder cancer

Was diagnosed with bladder cancer over 18mts agohad 6course BCG didn't work had another 3 course had a bad reaction to it urinating all the time and feeling there was all bits in my penis it wasn't until I started on my second course that I was told I had a high grade cancer the worst one so decided to have a radical urostomy.bladder out.prostate out etc plus storma in place the only problem I've got storma some 100mm below Belly button in groin area wonder if anyone else as same problem at the moment I've got to line up  transparent bag through a mirror and go for it.

  • Hi . Sorry I can't help with your question, but let me welcome you to the group. Always a bit quiet here on weekends, but I am sure some one with experience will be along with some advice. Best wishes.

    Best wishes to All,   rily.

    What is a Community Champion ?

  • That's about 3"? Mine is about an inch down. I change my bag every other day, I do this laying on my bed with a towel under me in case of leaks during the change. I prop my head & shoulder up on a pillow & the headboard & I carefully place the bag over the stoma, bottom end first then fold it down over the stoma as though on a hinge.

  • Thanks for the information unfortunately the only way I can see mine is through a mirror maybe I'll be able do do easier once the stents are out in about 17days time.iwill be having a word about it I know there's nothing they can do but was not seen by a storma nurse regarding position prior to operation which lasted 9hours.cheers all the best 

  • I realise about the stoma nurse. I had to complain until I was blue in the face before I managed to get a stoma nurse visit about an hour before the RC op. Even then, her drawings are only taken as a suggestion by the surgeon. I suppose at least with your stoma being that low, you can cover the bag with your underpants & trousers. My stoma is right on my waistline. I've swapped to boxer shorts which are just under my stoma.

  • Think I'd rather be in your position would love to be able to see mine for changing big problem not being able to see it . don't know if it makes any difference but my storma not prominent I mean sticking out looks like slightly inverted 

  • It will change shape over time. Mine started off slightly inverted too.

    1. Cheers.at least my tackle as gone back to normal size was swollen massively. Still having problems with bowels going everyday but I'd experience it to giving birth hard to get out but does come 
  • Hi Bigben,How long ago did you have the surgery ? It will become easier to cope with the stoma over time.It will change shape and shrink in the first few weeks.I used to measure it often to make sure the bags were a good fit.If you can tolerate prune juice that’s helpful for the bowels.Best wishes Jane

  • Had surgery 31/05/22