I have been to see my surgeon & have been told that to only thing to be done is to remove the lot. That means having a stoma and bag. Would be grateful to anyone who has gone though this to comment on this experience.
Hi Engineer46, I had my bladder removed November 2016 (I was 55), so a few years now. Had no issues, soon got use to the stoma, pouches and night bags. Not stopped me doing anything, even physical exercise, decorating etc. I would recommend wearing the elasticated girdle. gives you more confidence and keeps the stoma bag secure. Been so long now, I don't remember what life was like pre-stoma... My only advice is don't use a leg bag, they are a total pain... When I first left hospital and was a bit insecure with it all, I wore a leg bag. I was shopping in Morrisons with the missis, and the stupid thing got full and kept slipping... I ended up with the security guy following me, as I was constantly trying to stop this expanded bag of urine slipping down my leg. Finally confronted him and had a houmous's discussing about what was down my trousers... Needless to say he ended up rather red faces and apologetic and I never used a leg bag again. When driving I always have night bags in the car, just in case. Or travelling long distances, watching your passengers screaming for the next services, LOL, cos you don't need to stop...
Occasionally if you use the disabled toilet, you may get some snotty bugger giving you dirty look or even commenting, ignore them.
I agree with all that except I have found a leg bag handy from time to time - going to an Elton John concert just a month or two after the op or when joining my walking group around London using the Tube etc. Mind you I have never let it get too full before emptying it.
My stoma bag supplier gave me a radar key and a card to show if I need to barge to the front of a toilet queue/ show someone who looks sideways at me. Neither has happened yet. Nor have I yet had to use the night bag in the car though there's always one in the glove compartment.
Good luck and by now I expect it's all over - welcome to the club!
Never had a leg bag but always have a backpack in the car with a full changing kit and night bag wherever I go. Only used it once on a day out. It was early days before I fully mastered the best method of applying the pouch.I also have radar key and card which was useful on that one occasion.
One thing I find useful to protect the stoma from seat belt on a long drive is a concave hard plastic disc that can be attached over the stoma on the outside of the pouch.Just takes some of the pressure off when the belt tightens during the journey,
I was sent a free night bag at the start from the delivery company otherwise I would never have known they existed. Apparently they're good for watching football matches - not something I do. But also excellent for dancing to Elton John at the O2. They double the amount of urine you can handle before emptying, so good for peace of mind. But do need to be fastened quite tightly to your leg - they come with velcro straps.
My nurse prescribed me some more but they come in boxes of 10 and so far have only used one. You can wash them out like night bags.
Where did you get that disc thingy? I keep thinking I should try one although these days I walk much more than I drive. At the moment I just push the seat belt straps down but it's hard to relax that way.
I carry spare pouches, clothes etc in a very small crossbody bag wherever I go - they don't take up much space and I have had to use them once ot twice in summer when I get very hot on a walk and the adhesive fails - usually when I've let the bag get too full as well and it's quite heavy. Now I try to empty well before I need to. I enjoy standing up to urinate - much quicker and simpler and if needed eg in a theatre etc will be up for trying a urinal - I'm sure men wouldn't mind an elderly lady in need.
