Neobladder or stoma and bag?

I'm female with neo. Pros & cons to both options. Important with neo to expect initial incontinence, which can persist for some months to some degree while 'training' the neo. You have to stretch neo to a good size, while also learning to hold urine in and how to void in a new way. You have to empty at night at least once. Provided you are ready to cope with all that, neo is great in the long run, no external equipment to bother with. You may need to learn to self catheterise - depends on surgeon's preference. Some people do end up needing to self cath on a regular basis - happens more to females than males. I have to self cath but don't mind at all.

Neither option sounded great to me, I didn't fancy the incontinence, but a trial dummy stoma & bag made me think I'd want to empty that more often than was convenient with a long commute to work & demanding job. My surgeon gave me confidence that I could manage neo successfully, so I plumped for that. 

Getting up at night has been the hardest spect for me, but I have got used to that. I can usually last around 4 - 6 hours between voids - can usually predict from intake, activity etc when I will next need to empty. Best wishes choosing!

Hi Sharon,I had a stoma.Before cancer I had over 30 years of chronic bladder disease and neo bladder was not thought suitable because of this.I had already decided on a stoma anyway so it worked out well.I lead a full life.The stoma nurses give instructions on how to care for the stoma.I was happily changing the bags unaided a few days post op.Your partner should be given the opportunity to discuss the options in detail with the surgeon before the op date.Write down any questions you have and the answers.My sister went in with me and it’s helpful to have an extra pair of ears if possible.There Is plenty of support and experience here so hopefully that will help.Best wishes Jane 

Thanks for reply Jane, we are waiting for an appointment with the surgeon who will do the neobladder part of op if Rich chooses that, it seems like a lot more 'effort' at the outset with the neobladder but perhaps a better long term solution as long as all goes OK. Either solution is preferable to not having it done!

Thanks for info Teasswill, can you tell me if at night you get the full bladder feeling to prompt you to urinate or is it just a case of setting alarm to go because if you don't you will just wet yourself? The neobladder seems like a lot of learning/training at the outset but perhaps a better long term solution. Sharon

Hi City Girl,
I am a 56 year old male and had a NeoBladder in June 2020 when I was 53, so same age as your partner.
Regulars on this forum will know I am an advocate for the NeoBladder. But everyone is different and my experience isn’t how it will be for all.

I was back at work and playing golf 3 months after the op. I was anal about bladder training and exercised and did everything my doctors and nurses asked of me. The benefits 2 and a half years later are that my Neo is 95% the same as my old bladder.

I am 100% continent day and night. I wake without an alarm in the night as I get urges to go for a wee. Maybe twice every night.
I do not have to self catheterise. I only did that during bladder training.

To be totally transparent, I must also inform you that unfortunately my cancer is back in my pelvic lymph nodes. Wether that has anything to do with my choice of Neo over Stoma I don’t think we will ever know. I am on a trial drug for that and early signs are good that it is working.

But I repeat my Neo is amazing and pretty much as per my old bladder. For me. Not necessarily for all.

cheers,
Chasam

You do have to learn a new sensation of fullness (otherwise a leak will probably tell you). At night, muscles relax & leakage is more likely. At first I had to set an alarm (as well as wearing hefty pads) for every 3 hours - exhausting. I hate waking to an alarm, so eventually gave up & relied on leaks to wake me. I was told neos can continue improving for around 2 years post op, which I would endorse. Nowadays, night continence depends on intake during the day & how well I sleep. I mostly wake at an appropriate time to empty, but quite often leak to some extent.