New to this!

Hi In a tis, I haven't any useful info for that decision from my husband's experience, but just want to say Hi and Welcome to this most supportive forum. You are bound to get answers soon from those who know.

Best, 

Denby

Hi, I had my op 10 years ago aged 57. My hosp was able to put me in touch with two fellow Px to hear about each of those options.  At the time I was working & felt that stoma bag would need emptying more frequently than would be convenient, but I wasn't keen on the incontinence that goes with neo initially. Neither sounded that attractive to me for various reasons, but in the end I plumped for neo.

What you need to know is that ideally you need an expert surgeon with plenty of experience in neos, there is potential for more complications than stoma. You have to be prepared for initial incontinence & a training period during which you start with 2 hourly voids (if you can last that long) & gradually expand the neo to a usable volume. This can take weeks, months even years to fully stabilise & there may be some long term continence issues, especially at night. You need to get up every night forevermore to empty at least once - that is the aspect I found hardest. 

Having said all that, I am very happy with the outcome. It is relatively common for females to have difficulty emptying & then you have to self catheterise. I do that, but don't mind at all. I am dry by day & can go around 4 - 5 hours between voids. Nights I hate setting an alarm & rely on sensation to wake me. I need to wear a pad at night as quite often I leak to some extent. 

Whichever option you choose, you will still be able to go back to all your usual activities. There is no one best option, just what feels right for you. I am happy to answer any specific questions you have. Best wishes.

Hi In a tis,Welcome to the group.Your surgeon should be able to advise you on the options.I had over 30 years of chronic bladder disease before cancer.The surgeon did not think in view of this that neo bladder would be suitable.I had already decided to go with the Ileal conduit anyway.I felt I would be able to cope better with that.I watched videos on line about the different options before seeing the surgeon.I had the cystectomy in September 2019 aged 58.I’ve adjusted well to life with a stoma.It’s good to be able to sleep through the night without having to get up for the loo.I’m back to my old life but don’t have as much stamina as before.There is plenty of support and advice here whichever option you decide on.Best wishes Jane

Hello In a tis, welcome to the group. Rubbish joining isn’t it.
I am a 55 yo male so my experiences will differ to yours, but I had bladder removed and a Neo constructed last year.

So happy with the results.
6 months ago I would comment on here and say I was glad to have gone for Neo rather than Stoma and that daytime I was 100% same as before but nighttimes were still a challenge.
The challenge being the fact that I was leaking still at night and so wore Depends, and had to set my alarm every 3 hours.

It’s been nearly 14 months since my op and I now rarely wear Depends (I will if I’ve had a night on the beer!). I do set my alarm but I actually get an urge to wake now if I need the loo.

So as it’s stands I am now 100% same at daytime and 90% at night. 
Yes I’d rather not have to set my alarm still but I’m used to it now and what a small price to pay.

pros and cons with any option, but I am a big advocate of Neo Bladder.

Cheers
Chasam

Hi all,

I'm new to this too, Chasam, your experience has been a great help.

Thanks

Hi Mikall and a warm welcome to the group. Always someone here to help with any questions. Best wishes.