Advantages of a neobladder over urostomy?

Hi Daithi and welcome to the group. Went a different way myself but lots of experience here and I am sure someone will be along to share experiences. Best wishes.

Hi Daithi, 
I too am a fan of Neobladder as have had mine since June 2020.
The first thing to say is we are all different, and as well as Neo has worked for me I’m sure there are others who think it not so good.

I don’t have to self catheterise. I only did it when training my new bladder.
Initially I did have nighttime incontinence and had to set an alarm every 3 hours to alleviate that, but over time my body worked it out and after a year or so I was waking naturally as I get a “full” feeling and just wake.
I do pee mucus still but that is to be expected and causes no issue. Interesting when I go for a wee at football in a big trough and my mucus wee flows past other men weeing. They must think “what the hell is that !” 

You’ll find fans of urostomy on here too, so it really is your shout but I’d recommend Neo.

cheers
Chasam

Thanks, Chasam.  I can definitely see the advantages of neobladder if it's not too high-maintenance and allows you to lead a reasonably normal life - urostomy definitely also has disadvantages for me as I love swimming and watersports.  Descriptions of neobladder make it sound like you spend all your time thinking about it and maintaining it, so really encouraging to hear that this was not your experience.  Presumably the nighttime incontinence can be managed with TENA pants or similar?  I would love to hear from others too, pro or anti neobladder or urostomy, as I will have to make a choice fairly soon.

Hi Daithi 

I wasn’t offered a neo bladder so I have a urostomy. It doesn’t stop you living a completely normal life-I go swimming with no issues, and I also have a colostomy. Stomas are not a disadvantage to swimming. 

I’ve never had any issues with my urostomy, no getting up in the night to wee, never had a single urine infection in more than 3 years of having it, still wear the same clothes, do the same things. obviously no need for Tena pants. 

I can’t be anti-neobladder because I don’t know what it’s like to have one, but I’m happy to have my urostomy. If I’d been given the choice, I would have chosen the urostomy since I was having a colostomy anyway at the same time.  Might as well have 2 bags as have 1! I’ve never regretted it.

Sarah  xx

Really encouraging to hear, Sarah.  The urostomy option initially seemed much more straightforward than the neobladder, but now that it's summer I am reminded of all the things I like to do that would be easier if the neobladder wasn't too high-maintenance.  However, like you, I may in the end not actually have the option, so it's really helpful to know that you have a good quality of life with a urostomy.  Much appreciated.

Hi Daithi,I wasn’t considered suitable for neo bladder but had already decided on a urostomy.For me the best part of having a stoma is not having to get up in the night.Shortly before the cystectomy I had been getting up every 10/15 minutes every night as the tumour was causing an obstruction.I don’t regret having a stoma,in my case it has been life saving.You will still have to deal with mucus if you have a urostomy but you get used to it.I did find the recovery tough going but nearly 4 years on I am cancer free and lead a full life.Best wishes whatever you decide.Jane xx

If your surgeon is a fan of neo, that at least means they probably have lots of experience, which is essential. Patient experience varies, partly due to hosp protocol, surgeon's preferences etc. Some never require self cathing, others insist on all patients learning it. I'm female & had my neo nearly 12 years ago. I do have to rely on self cathing to fully empty, which happens more often for females than males, but doesn't bother me at all. 

With neo, you do have to be prepared for hard work at first, you may well have incontinence until neo stretches to a good size & you learn how to control it. That can take anything from weeks to months. There is a certain amount of maintenance in the early days eg flushing tubes but long term neo is low maintenance. You learn to sense when it is full & needs emptying.

I must admit I found getting up at night the hardest aspect & I still dislike it. I don't set an alarm so always wear a pad in case of leaks. 

There is no best option, only what you feel will suit you. Feel free to ask any questions.

That is really helpful.  I must admit that I wake up at some point in the night anyway, so would probably use that opportunity to empty, but would worry about nocturnal incontinence if it could not be managed with pads or pants.

Great to hear, Jane.  I guess the same may happen to me, and being told that I am not suitable for a neobladder would at least make the choice very easy for me in a way.  If it happens, I will know not to fear a urostomy, so thank you.

Hi Daithi,I did read up on the different options and watched videos about them beforehand.I had a good discussion with the surgeon and that was helpful.It Is a big operation and recovery can seem very slow but you will get plenty of support on here to help.I felt better after 3 mths and by 8 mths I was able to resume full time work caring for my disabled mother.I haven’t found adjusting to a stoma difficult at all.It becomes a routine and it’s not hard once you know what to do.Best wishes Jane x