Just had radical cystoprostatectomy

Well done NellS26 you are sounding positive. Hopefully your pesky cancer is now toast. I had the same op in Nov 24, and am doing very well. Totally used to the bag, and have adjusted well to the new arrangements. Do you have any questions / need any advice? All the best Leo

Hi NellS26,

Welcome to the forum, I'm female and had my cystectomy in January 2023 so have been clear for just over 3 years.

Glad you are finding your way with the stoma and bag. You may like to look at the stoma forum as well - that covers colostomy and Ileostomy as well as urostomy but the hints and tips on having a stoma and bag are quite similar.

I'm sure you'll find life with your stoma becomes routine very quickly, we all have to get used to it but it's simple once you know how. I'm sure your stoma nurse will be very helpful and friendly.

Ask anything you like on here, someone will have an answer. Plus if you click on our names above in green you'll find our bios which can be useful.

All the best,

Latestart

Hi hope you recover soon , I had my bladder and prostate removed exactly 12 months today , and ok the bag changes and irritation under the adhesive is a bit of a pain  but prefer the positives , not in pain when I use the loo, no sleepless nights having to run to toilets every 30 minutes, not having to stop at every service station on the motorway( the better half  has to remind me just because I don’t need to she does ) but above all I’m still alive and kicking  most of the time you forget the stoma is there and to be fair hasn’t stopped me doing much 

this is a great site as someone has always got some friendly advice, things can be a worry at times so helps to talk 

all the best, take care , Keith

Great reply

Hi NellS26,Welcome to the group.It does take a bit of time to fully recover and small steps is the best way forward.You are still early in the recovery process but you should get stronger over time.I had a cystectomy in 2019 and found the first 6 weeks the most difficult.Your stoma may still be shrinking so it’s important to measure it to avoid leaks.You will soon get used to it and it’s care will be become routine.I hope you find the forum helpful and supportive.Best wishes Jane 

Thanks Leo

Hi Keith,

You mentioned irritation under the adhesive. I see you have had your stoma for a year now and will probably have sorted that out but if not (having had it myself) I can tell you what works for me:

I have lots of allergies so use Weland convex bags. 1st because they have Manuka honey in them which calms the rash down and 2nd because my stoma is an innie so leaking is more likely behind the flange and the urine can irritate skin too. I warm the bag under my arm before pressing it on to start the adhesive working quickly.

Also if my skin flares up badly I use calamine lotion on ithe skin during the bag change (or, because my skin is used to steroids, betacap lotion prescribed by the GP.) In both cases making sure the skin is dry before sticking the bag on.

All the best,

Latestart

Thank you 

Hi. Thanks for thinking of me about me  yeah still have the problem and always had allergies to on thing and another, such a sensitive person  have been back several times to see the nurse and tried different bags and barrier creams , sometimes the rash flares up that much that the little sores weep and cause the bag to come of sometimes 3 times a day , other times they stop on 48 hrs , nothing worse than when it starts to itch and you can’t scratch , I do use calamine location occasionally but even when bone dry sometimes stops the bag from sticking , gets to the stage sometimes I have to secure the bag with additional tape which then causes a larger rash . I always make sure it’s dry and warm bags up especially in the winter , thanks for the advice will certainly give it go 

thanks again Keith

ps what company do you use for the bags