Leaking during neoblader enlargement - what to do ?

Hi, I had my neo 11 years ago. I've not heard of people having catheter kept in for training - as you are experiencing, it isn't fully effective. I'm afraid leaks are pretty inevitable during training, so you do need to wear protection - not easy with a catheter in place. Being dry for 45 mins is not too bad as a start. You need to concentrate on pelvic floor muscles to try and hold urine in, which is going to be difficult with the catheter providing a pathway out (either through the tube or round the sides). It is also important that you learn how to empty voluntarily, not just rely on opening the catheter. I was told to put up with leaks but try to hold on - I was on a 2 hour schedule from the start (4 at night), but some people do have to start with a shorter interval and build up slowly. I got to the required volume in about 4 weeks, but took much longer before I was reliably dry during the day.

Stress points for leakage are movements such as standing up/sitting down, walking or bending over - anything that puts pressure on the abdomen. So thinking before you move and finding a way to avoid that tension will help avoid leaks too. I used to do anything that required activity just after emptying & then as I filled up, stayed sitting until I felt too full (did get quite painful at times), then rose carefully to go to empty.

Gradually you will find that the dry period lengthens and the leaks will reduce, but it can take some months for full control. Nights will be harder. Do you link up to a night back at the moment, or do you have to get up & empty?

I ‘ve had my neo for 5 years now. As is Teasswill, am a bit con fused about the catheter being in place at this stage . If you are talking about a Foley and a bag, that horrible contraption is usually removed at the latest 6 weeks. With it in place it would be impossible to train anything . I was told to pee when I felt the need and that the neo would stretch to its optimum size on its own . There is a fear of overstretching, resulting  in what’s called Floppy Bladder which results in greater difficulty voiding completely. My suggestion is to wear a day pad. ( I didn’t have to ) and go as soon as you feel the need . Life’s time constraints alone will stretch your bladder .Orillia.

Hi Teasswill, Thank you SO much for your prompt reply - much appreciated !  As you say, movement at the 45 minute point is what starts the leak, so I've decided to go and lie down at about 35 mins in, and concentrate on holding on - hopefully, I can then get into the "stretching" phase before finally releasing.  I will try that and see how it goes !   YES, it will take quite a while to get through this, but I'm determined to succeed !  I do use a night bag, so at least I get some rest .... !! Thank you again for your advice !

Hi Orillia, yes, I guess it depends on your urology team as to how bladder enlargement is achieved.  Southamptom seem to opt for what they call the "flip-flow" tap on the end of the catherter.(I think they DO call it a Foley catherter)  I have decided to only do the stretching thing every other day, as I felt a bit tender in the abdomen after a few hours on the first day.  As you say, I guess you can overdo the stretching and the last thing I need is a "floppy" bladder, so I'll go more carefully from now on.  The urology team DID say that they had other ways of achieving enlargement but I don't know what they are.  When I see them next, I'll enquire.   Get to see the consultant on Friday, so hopefully I'll hear the results of histology - keeping my fingers crossed on that one !   Anyway, thanks for your input - appreciated !

You may find it actually easier to hold when standing or sitting - depends how your insides arrange themselves, but I feel full more quickly when lying down. Also bear in mind that getting up from lying down will be tricky to do without triggering leaks. 

I found the process very painful the first few days. Rather than do it every other day, I would keep it up at every void, but maybe not for so long each time. Neo is still elastic & will take longer to stretch if you don't persist. You may also find that you fill at a different rate according to time of day, intake etc. After the first few days I was told to start sensing fullness rather than empty by the clock. I also had to keep charts of intake/output.

Best wishes.

Hi Teasswill, Thank you once again for your thoughts on this.  I thought that lying down prior to "the leaking time" would allow me to "hold on" thus increasing pressure on the neobladder to (hopefully) stretch it. I would then drain whilst lying down.    Obviouly, I won't be able to hold on for a long time, but, hey, little by little !! I have been "force-feeding" myself fluids to create more opportunities to stretch - as I said earlier this produced an opportunity every hour.  Did you do the same or take it as it came naturally ??  Also, did you do it every day, or have rest days when you could get on with normal life !?

You have a good attitude, it is definitely a marathon, not a sprint. That hour should soon extend to longer & then you will start to integrate it into your life instead of the other way round.

I had catheter removed 2 weeks post op & that was it, training without a break. Couldn't call it normal life, as I was also recovering from the surgery - a very different daily schedule! For some time, I organised my activities around the need to go to the toilet. I got used to knowing when I was likely to be full. Once I had stretched to the desired size, at about 6 weeks post op, I was then allowed to sometimes empty for convenience instead of always waiting until full. (Around that time, I also lost the ability to fully empty myself & ended up having to self cath every time, but I don't mind doing that.) 

You should be drinking around 2 L a day, but bear in mind food can contain a lot of fluid (eg soups) too. Also worth knowing that neo will continue to produce urine even if you are not drinking. The bowel tissue tries to neutralise the contents by taking water from the body, so the concentrated urine produced by the kidneys at night is diluted in the neo, hence the need to empty at night. Having said that, if you are not drinking, the rate of filling is slower, which is why I can go much longer in the morning than later in the day.