Last appointment with continence nurse

Hi all

Just saw my continence nurse (hospital based) for the last time today and she was supposed to do bladder retraining with me assigned by urologist.

Previous appointment the nurse stated possible Neurogenic bladder which urodynamics did not show 7 years ago and got me to do a 3 day bladder diary.

When I showed her the diary today she stated the bladder was all over the place and is referring me to a work colleague that does community nursing for a catheter company for pads/equipment which I am afraid of having catheter+bag combination as really self conscious and would really accept pads/nappy as have had to accept by myself (no counseling etc due to not able to speak about it) and I am really active and have issues with things sticking on skin (perhaps sensory issues with asd/aspergers)as well as I am so overweight I will have issues seeing what I am doing inserting Catheter.

Any advice would be greatly accepted.

Thank you

When I saw my continence nurse I was given the option of catheter but I declined (remember it’s always your choice). I am however fecal incontinent as well so the only thing that really works for are the tena slip nappies that are offered.

I am very active as well and a leg bag is useless and also they can come unattached which you don’t want in your life. Also harder to hide. If you have severe bladder trouble like I do (mine is nervous system based) I get the tena slip provided and so should you.

I think mine is due to 9 year old l4l5 s1 nerve impingement as had no bladder issues prior.

No surgery as neurosurgeon stated nothing could be done in 2012

I was offered sheath type catheters with a leg bag but decided on nappies or pads as the continence service all them.

You always have the choice but when I was diagnosed with neurogenic bladder my urologist suggested intermittent self-catheters as an alternative to foleys with leg bags. They are designed to be used once, a quick in-and-out to empty the bladder about 4-6 times a day to prevent overflow leakage. They pose a much lower risk of infections than foleys (I've had three UTIs in the 7 years of using intermittent caths, as opposed to 2-3 a year beforehand caused by having stale urine permanently sitting in my bladder that I am unable to completely expel).

They are very easy to use, and very discreet, it's not painful at all and they work really well for me.

I still wear diapers 24/7 as well because I still dribble and sometimes my bladder will just decide to let go anyway, despite the catheters. But I am now changing them once or twice in 24 hours instead of 4-5 times, and more days than not, I'm just tossing a dry diaper at the end of the day because it clumped up and became ineffective.

If your urologist hasn't mentioned these yet, ask him/her about them.

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tomcat said:

I think mine is due to 9 year old l4l5 s1 nerve impingement as had no bladder issues prior.

No surgery as neurosurgeon stated nothing could be done in 2012

Click to expand...

Mine is the same; L5/S1 injury due to an accident I had about 25 years ago. Because it was so long ago, they said that it was most likely too late for surgery to have any positive effect, and since I don't experience any pain from it, I don't want to put myself through that if there's a chance it won't even help.

tomcat said:

Hi all


Just saw my continence nurse (hospital based) for the last time today and she was supposed to do bladder retraining with me assigned by urologist.


Previous appointment the nurse stated possible Neurogenic bladder which urodynamics did not show 7 years ago and got me to do a 3 day bladder diary.


When I showed her the diary today she stated the bladder was all over the place and is referring me to a work colleague that does community nursing for a catheter company for pads/equipment which I am afraid of having catheter+bag combination as really self conscious and would really accept pads/nappy as have had to accept by myself (no counseling etc due to not able to speak about it) and I am really active and have issues with things sticking on skin (perhaps sensory issues with asd/aspergers)as well as I am so overweight I will have issues seeing what I am doing inserting Catheter.


Any advice would be greatly accepted.


Thank you

Click to expand...

In the UK (not sure where you are) when someone is "prescribed" as needing a permanent indwelling urinary catheter, the community nursing team come out and change it every time it needs changing, so you wouldn't need to worry about inserting it yourself. (IF you are in the UK, I have no idea what the routine is in other countries)


I am classed as morbidly obese, (WAY too short for my weight (height 5' 1" - 100kg in weight) but my catheter and leg bag works just fine - I actually use a sleeve to put the leg bag on my leg, instead of the straps which annoy the hell out of me.


When I had urodynamics they filled my bladder up to 800ml before stopping because they considered it counterproductive to try and make me leak. I was diagnosed with retention and incontinence. (they said it was a **** bladder, but I honestly cannot remember what they called it) my bladder could not tell my brain when it was full, and my brain could not tell my bladder when to empty - it appeared the communication between the two had either died, or was very poorly (nerves)


I have been catheterised ever since.


It was first suggested that instead of a leg bag, I use a valve system and go empty my bladder via the catheter/valve every hour. This did NOT work, so then it was decided that I should wear a leg bag to collect the urine instead.


Charter Healthcare deal with my catheter supplies, and they have lots of options for people who would prefer to completely disguise the fact that they are wearing a catheter. (an example - obviously it is highly possible you are in a different country and therefore using a completely different supplier.


Whatever you end up doing, I truly hope that you find a solution that is suitable to you.


Best wishes x

I suffer from UAB with no known cause, my bladder on urodynamics got to 1000ml before they said that's enough. I also seem to have a dead bladder that for some reason fails to communicate properly I wish I had answers.

I wear the NHS supplied tena nappies throughout the day and do ISC on my self morning and evening it's not to bad but it comes with its risks, ended up with urosepsis once and stuck In hospital for a few days other than been ok.

Happy to provide any help if you need it