Night time Incontinence

Hi there. Almost the same as you. Had same prob but now slightly better. Only thing my consultant said was that...we need to make extra effort to try make sure the bladder is empty when going to the loo..take your time. Since doing this it has helped considerably..but not totally. And as you mentioned..i try not to eat or drink after 7pm..cheers

Hi Bluepanther,Thanks for the reply. It helps just knowing that someone else has had the same problem. I do try to empty my neo as much as I can but so far that hasn't helped. How long has it been since your RC? Thanks

8 months. I bought a clamp..which i use occasionally..not perfect but not bad. Im similar to u in as much as daily life is pretty much back to normal but those nights are an irritation. Keep me informed if you find the magical solution lol

Five months is still fairly early with neo - my CNS told me they can go in improving for around 2 years post op. If you can only hold for 2 hours plus, you may still have a fairly small capacity - do you measure ouput at all?   Unfortunately when you sleep, the muscles relax that you now need for continence. This may improve with time  as your body learns the full signal & subconsciously operates the muscles. Night time is particularly a problem for men - some resort to using a condom catheter at night to solve this. 

I still tend to leak at night as I don't set an alarm & don't always sense to wake when full. I find overall reduction in daytime intake means less likely to leak, rather than specifically in the evening. Neo will try to neutralise contents, so will produce much the same quantity of urine at the same rate day & night. Have patience, once you are reliably dry for around 4 hours daytime, hopefully you will find improvement when sleeping too.

Thank you Teasswill, you have given me more information than any of my medical team. I was only told to get to the 2 hours so I was under the impression I was doing well. I understand now that I should be holding it for longer. I have measured my output and I am getting approx. 250 to 300ml normally but have measured as much as 400ml. How much should I be aiming for?

Hi Pringle, I’m 5 years in with my neo. I believe nighttime complete continence with a neobladder is a myth. I wear a men’s diaper to bed every night. As well I fold up approx 8 ft of toilet paper into an 8 “ pad that I put inside the diaper. Occasionally when I misbehave (ie, copious beers or the like before bed ) I will leak and wake up. This will soil the T.P. which I fire in the toilet and put in another. I get About a week out of a diaper until it gets stretched out of shape and then I use a new one.Have not soiled the sheets in 3 years and that was because I neglected to suit up ( for the above mentioned situation ).95% of the time my bladder warns me to wake up and I do just as in the days of old, the other 5% I leak a bit into the TP and that’s that .On average I have to get up 1 or 2 times per night. Emptying your bladder before bed is very important and as has been mentioned” THIS TAKES TIME”. It’s a time when you take  the newspaper, I phone etc and just chill. I’m in Mexico on vacation right now, in and out of the pool all day long , the diaper thing is such a small inconvenience  for being anatomically as you use to be. ( try not to fall asleep on the couch without suiting up first. Orillia. 

Opinion varies about optimum volume, but I would say you need to aim for around 450 ml, with 500 maximum. According to time of day & intake, for me that will take around 4 - 6 hours. My perception is that neo changes shape as you move around & capacity can also vary. In my case sometimes I feel full & a need to empty when only maybe 350 ml, other times I can easily go to 500 ml. If I go over that I will definitely leak - there is a danger in continence being too good, or lack of fully emptying, in that neo can stretch too big - then it gets 'floppy' and is even harder to empty. I rely on self cathing to fully empty as I can only manage about half at most myself, which I think is also due to neo posiiton & shape. 

What is important is to learn the sensation of being full, rather than empty by the clock. In the training phse, I was told to hang on a bit longer each time, despite leaks, to stretch neo to desired size. I did that by staying still once I felt full & when it got too painful/leaky, make a slow, controlled walk to the toilet. That way I got to capacity in about 4 weeks, but it can take longer - definitely a marathon, not a sprint, in terms of optimum performance. 

Thank you, that's all very useful information.

It's funny you mentioning self-catharising. All the research I did and everyone I spoke to prior to my RC said they had to self catheterise at some point but when I asked about this my consultant said it was not needed and, as such, I have never been shown how to do it. 

Eh pringle. Re. Self cath. Me too..never had to do it..touch wood

Regards

Depends on what consultant prefers. I was very closely monitored in the early days & just had to self cath each evening to check residue. When that got down to around 20 ml, they were just about to say I need only self cath once a week. That was when I started having difficulties emptying & was actually very relived when they gave me the OK to self cath as needed ie every time.

Seems to me useful to be able to do it, just in case. Does your hosp do ultrasound to check bladder is empyting fully? I wonder what your consultant would suggest if Px aren't fully emptying.