3 years ago, following several turbos and BCG I had radiation and chemo which appears to have stopped the bladder cancer. However , I now have irradiation cystitus which has resulted in several episodes of heavy bleeding and the need for cortorization of virutally 80% of my bladder....making it virutally useless. The time has come for me to seriously consider a cystectomy but would like some first hand experience (pros and cons) of the post cystectomy alternatives. I unerstand the choices but really would like to have some help in un derstanding which is best for me.
Reading posts on the various forums it seems that so many (majority??) of those with a stoma and plastic bag suffer with leakage.....that horrifies me. But is leakage minimal or such that if you are out in public it is very obvious to everyone? Do you wake up in the night in a wet bed ??
If you opt for the catheter system - how frequently do you have to change caths?
I really would appreciate and comments - I need to do somethig it is just trying to decide what.....
As background - I am 85 (today Christmas day !!) male. Most recently had half a lung out with cancer - unrelated to my bladder cancer. I have acujte copd.
I have always been relatively very active - but not so for the past 4 years.....
Finally may I wish you all the very best seasons greetings and a healthy new year as possible.
The stents which we had post bladder removal are not the same as the stents you currently have-ours were long thin tubes which are only temporary post surgery. We don’t have stents now.
With a urostomy you have no control over when you pee, other than control over when you empty the bag itself. With no bladder, urine has nowhere to be stored, so the stoma diverts the urine outside of the body into the bag. You cannot control the production of urine at all, but you chose when to empty the bag.
When you have your bladder removed, there are 2 possible options-a neobladder inside or a urostomy taking urine outside. Neither Jane nor I had a choice so we both have usostomies- it’s not always possible to choose one or other. Sometimes circumstances mean you have to have a stoma.
Sarah xx
I wonder if you have been reading about nephrostomies, which do involve stents and urine going from the kidneys into a bag outside the body? These are not the same as urostomies, but maybe that’s where any confusion might come from?
Sarah xx
As I mentioned before, you may not get a choice in what your options are. I didn’t. But rather than going to Google, the best person to speak to is your consultant/surgeon to go through what would be possible in your particular circumstances.
I notice you’ve already had a response on this thread from Teasswill who has a neobladder, so I’ve tagged her to see if she would like to add anything. Obviously I only have knowledge of a urostomy, which I’ve had for coming up to 4 years. If I’d had a choice of neobladder or urostomy I would have chosen urostomy but that’s because of my particular circumstances.
So..to answer your pros/cons of a urostomy from my point of view-there is no training involved, other than to learn how to change the bag. No getting up in the night to the loo because I connect to a larger night bag to sleep. In the day, I simply go to the loo and empty the bag by means of a small tap at the bottom of the bag. it was easy to get into a routine of cleaning round my stoma and changing the bag. I haven’t had to dress differently.
Cons-the bag can leak. For me this is not a frequent occurrence but happens very occasionally both awake and asleep. If I’m going out I carry spare supplies, and on a long outing would carry spare clothes. However my bag has never yet leaked while in public or on holiday! I use a waterproof cover on my mattress just in case, but I also have a colostomy so I am dealing with 2 stomas and therefore potentially 2 bags which could burst! It can be tough at first to find bags which exactly suit you as there are so many different products on the market, but once I found the products which worked well for me I was fine.
While you can read real life experiences here on the group, again I would stress that your consultant/surgeon is the best person to ask about which option is both possible for you and most suitable.
Sarah xx
A friend of mine in the UK has had the Mitrofanoff, and while she was very keen on having this option, she has had a lot of issues with scar tissue resulting in closure of the opening, and has needed several additional surgeries and revisions. She doesn’t regret having it, but for her there have certainly been a lot of post surgery difficulties.
I think the urostomy does seem to be the most simple to get to grips with-mine has thankfully never caused a problem in all this time.
Sarah xx
