Anyone with experience of bladder removal surgery and adjusting afterwards?

[MarchionessVonSausage]

I wasn't sure which topic to put this in, please forgive me if I got it wrong.

My DP's brother is having his prostate & bladder removed this week, due to cancer. He's had chemo, now time for surgery.

He (brother) doesn't want to talk about it. Fair enough. Thus I have no details on what choices he's made about type of surgery.

He's a single man, late 60's, lives alone in a rural area, as do I and most of his family. He'll be having the surgery at a major metropolitan hospital and he has family to care for him afterwards thankfully.

Living without a bladder must take some getting used to. A stoma etc. I'm just asking if anyone here has dealt with it personally or with someone close? I'm very worried for him. It's such a big lifestyle change.

TIA X

I had bladder cancer resulting in surgery to remove the bladder and create a stoma. There are alternatives (e.g a neobladder or internal pouch which requires you to catheterise yourself) but a standard urostomy with a stoma and external bag is the most common option, and it’s a more straightforward operation with fewer post-surgery complications.

The nurse oversaw me changing the bag before I left the hospital to make sure I was comfortable doing it, and set up the arrangements for me to order supplies (I call the supplier who gets the gp’s approval for the prescription and deliver within about 10 days). They also provide details of the local stoma clinics if you need help, but unless you have any vulnerabilities that probably won’t be needed as the process of changing the bag is very simple and takes a couple of minutes.

I would say it is life changing, rather than life limiting. It doesn’t stop me doing anything I did prior to surgery - bearing in mind I wasn’t particularly active anyway. I’m guessing it may put paid to any ambition to join cirque du soleil or the like! I do also have to be mindful of carrying around everything I need to change the bag when I’m out of the house, especially if I’m on holiday - sometimes things just go wrong and it’s a bit disastrous if you are away for 10 days and you run out of supplies on day 9!

It does make a difference to what I feel comfortable wearing. Personally I’m self conscious about the bag showing and wouldn’t wear a bikini for instance, or low cut jeans and a crop top. However, I am old and there are many reasons why I wouldn’t be wearing that kind of thing nowadays, regardless of the urostomy bag! I may have felt more inclined to push for an alternative, less visible option if I had been younger.

I hope it all goes well for your BIL!

Thanks so much for your detailed reply!

I did read up on neobladder & internal pouch. I'm in Australia and the local Cancer Council is great for info. But there's nothing like speaking with someone who's been there/done that.

It would seem that stoma and external bag would be the easiest way to go, all things considered. No, he's not aiming at a circus audition either! He lives a quiet life in general. Still, it sounds like the end of any sex life (not that he has a girlfriend) and it's a big lifestyle change.

I do appreciate your reply and I'm really pleased to hear you've done well. I'm 51 and fairly slim but still wouldn't wear low cut jeans, a crop top or a bikini in any case!

Am just guessing here- it must take at least 6 weeks to get used to the stoma?

Here in Australia, he gets 10 days in hospital on the govt dollar for the surgery. Then home visits. Our Medicare system doesn't always work well, but for things like this I'm very grateful.

Many thanks & good health to you from the southern coast of Australia X

My FIL (now mid 80s) had his bladder removed around 25 yrs ago. He adapted very well & has continued to lead a full & active life. He was initially nervous about staying with relatives etc as was worried about leaks but as time went on his confidence increased. Hope your BILs surgery goes well.

Thanks so much for that anecdote! It sounds so hard when you first hear it.

XXX

Ten days to recover in hospital is great! They kicked me out after four

It doesn’t really take long to get used to the stoma/bag in terms of changing the bag, it’s really straightforward and there is no special care needed for the stoma. However, as there is no urge to pee you have to remember to keep emptying it before it gets overfilled, particularly when going to bed!

Regarding a sex life - I think there are a lot of ostomates who are still managing that so don’t write it off for him 😉

Hi OP, I had a neobladder op 11 years ago when I was 49 . As a pp said, life changing, not life limiting & the surgery has in no way stopped me living life fully. I'm hyper continent which means I can't wee naturally, so just use a catheter each time. Takes about 30 seconds!