Bladder Reconstruction

Hi Colli. Not had this procedure myself, usually called a neo bladder. We do have members here who have had this and I am sure will be along when they pick up your post. best wishes.

Hi Colli,
I had Bladder and prostate removed and a NeoBladder created nearly 2 years ago.
Happy to answer any questions either on this forum or via a chat.

FYI though, and just being upfront and honest, my recovery could not have gone better so maybe I am an exception rather than the rule.
I presume 1 year on your husband is having a few problems? 
As I say, very happy to talk but wouldn’t want to make any issues worse because I am doing ok.

Cheers,
Chasam

We are so pleased to hear of a positive outcome, it provides us with hope.  Yes, hubby is not out of the woods yet.  He has ED and remains night time incontinent, using anywhere between 2 - 3 pads after setting his alarm to wake up every 3 hrs or so.  Sometimes it's hard to see any positive.  His surgery didn't go well initially, he got sepsis and then his stitches got infected and his new bladder was punctured with a lack of care by a nurse, so he had to undergo further surgery to correct this.  His aftercare was non existence due to covid and lack of specialist nurse availability.  We have since moved away from that hospital area and he's with a new consultant, 1 year on and his ct scan carried out has yet to be compared to the one he had with the old hospital, so we're still waiting for those results but they were not worried about anything.   

Are you continent? If so, how long before you saw the improvement.

Do you have any issues with ED?

We'd love to hear about your journey.

Hi, I'm female with neo, so different issues, but have been around long enough to pick up quite a bit of info. Given your hubby's difficult start, I'm not surprised he is still having continence problems at night. Neos can take a couple of years to stabilise & nights are the last to improve, especially for men. Some men use a condom catheter to overcome the need to get up. I'm 10 years post op & still use a light pad at night as I hate using an alarm & sensation doesn't always wake me in time. Is your hubby is dry by day? Might also be worth getting more absorbent pads. District nurse might be able to arrange an NHS supply, or you can buy online (eg https://www.ageukincontinence.co.uk ) which is cheaper than shops, with more options.

Worth having a chat with the consultant re ED, as there are options to try for that. Best wishes.

Hi again Colli.

I am a 55 year old male, so was 53 when I had the op. I was fit and healthy (in all other aspects) and not overweight , so things were in my favour.

I had a setback with my neobladder when I still had my catheter in, and urine forced a stitch or two and went into my wound bag rather than via catheter.

It just meant the catheter remained in for 6 weeks or so until everything healed.

I'm not sure if that helped me in the long run, but since that I've had no issues.

I was daytime continent straight away and have not had to self catheterize after the initial bladder training 

Nighttime did take longer, maybe a year of wearing Depends and setting my alarm every 3 hours . Towards the end though my pads were dry and so stopped wearing them altogether.

Am now fully continent and no longer set an alarm as my "fullness" feeling wakes me a couple of times a night.

As for ED, again I am lucky in that the nerve sparing my surgeon performed was successful and am as before the op except for no semen of course.

The last thing I want is for you and husband to feel worse because someone else's recovery has gone so well, but it does show what can happen over time.

And your time may just be longer than mine 

Of course there are ways to help ED as was already highlighted.

The main thing in all of this is giving your husband the best possible long term prognosis after being diagnosed,. and RC does that 

Cheers

Chasam

Thank you all for sharing your experiences.  I know everybody's journey is different and hearing all yours does give us hope.  Its a great community to be able to discuss sensitive issues in a  safe environment.  Blessings to you all.