Non muscle invasive bladder cancer

Hi Senseijohn and a warm welcome to the group. I am sure those living with a stoma will be along soon with some help. Best wishes.

Hi Senseijohn,Welcome to the group.You can lead an active life with a stoma and I expect you would be able to play walking football.I’m a keen gardener and was apprehensive that I wouldn’t get back to that with a stoma.It’s been fine and people swim and ride with them.I’m useless at sports but I expect the more sporty will be along with their experiences.I was amazed at how quickly I got used to the stoma Having had chronic bladder disease pre cancer it’s changed my life for the better.I hope you find this group helpful.Best wishes Jane 

Hi Senseijohn,

After muscle invasive bladder cancer I opted for a stoma and bag. And found it very straightforward.

Once you learn how to stick the thing on properly  - we can help with tips and the stoma nurses are very helpful in hospital and once you're home - it's easy enough to get used to.  There's also a stoma forum on here where others with stomas can be found. 

Some woman swam the Channel with a stoma, so walking football should be a doddle. I walk a lot every day fast up and down hills as exercise and that hasn't been a problem. I have done resistance machines at the gym without problem too. I've also got back to pilates and am building up - you move your abdominals for that but again it's not a problem now I'm accustomed.

And the really positive thing that I and others always mention is the 8 hours uninterrupted sleep at night ( you add on a night bag with enough capacity). 

The bags are delivered on request, you can use a belt for added security - I do because I once lost a lot of weight so my stomach isn't washboard flat. (I told my surgeon he should have given me a tummy tuck while he was in there.) And special underwear with a pocket for the bag is useful and looks OK.

You change the bag when full-ish - we no longer have the urge to urinate and it fills gradually over time depending how much you drink. The used bags go into the normal waste bin.

There are a lot of us about but because it's fairly simple to handle you wouldn't know.

Good luck with your decision and before you do decide ask to talk to your local stoma nurse so you can have a look at what's involved.

By the way, the actual stoma is just a red lump on your front, handily placed to fit into the bag. And cleaning the area is just like cleaning a baby if you've ever changed a nappy, soft dry wipes and lukewarm water.

Good luck with your decision and with your op.

Latestart

Cheers very helpful and positive

I am becoming more certain about my decision

Do you think you will go for bladder removal ? Best wishes Jane 

My specialist nurse has advised me not to make a decision till I have seen the surgeons who will be performing my operation. I think I am leaning towards removal of bladder and kidney as it removes all the cancer. 

Yes it’s wise to see the surgeon before deciding.You need to know all the pro’s and con’s.I took my sister with me plus a notebook with questions.An extra pair of ears is helpful.Best wishes Jane