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Incontinence away from home

User
Posted 21 Apr 2023 at 21:04

Thanks for allowing me to join the group. I had robotic radical prostatectomy Jan 2022 which resulted in reduced nerve activity as the surgeon decided the cancer was 'my words' trying to escape. Despite regular pelvic floor exercises I still leak but to much reduced level. Leakage tends to happen when I am tired, or lifting heavier items. The biggest issue is when away from home and needing to have a bowel movement, as this always causes urine leakage, at home I use a plastic jug. I do wear a light Tena pad throughout the day not overnight. Does any other club member have these issues, if so any solutions other than carrying a jug around when away from home. Any help appreciated. I regard myself as fit attending the gym twice per week and 68 years old.

User
Posted 21 Apr 2023 at 22:41
Have you considered trying a penis clamp or Conveen sheath?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Apr 2023 at 12:22
I used Conveen sheath and bag system at end of my RT where I had some long journeys and no facilities as it was difficult for me to hold urine for long. This worked quite well as I got the appropriately sized stocking in addition to the belt to support the bag which has a valve to empty. I found I needed this as there is a tendency for the bag to slip down, particularly if you move energetically. I contacted Coveen who kindly arranged to send me a range of their products free of charge, but don't know if they still do this. However, if that included the sheaths, only a few were provided and I arranged through my GP for appropriately sized ones to be provided at a local pharmacy. It is highly recommended to cut back/shave pubic hair in the area to avoid being pulled. I only used this in emergency because you don't want to use it as a norm because that way, control is not being exercised. (Sadly, for the small number of men that never regain control, the Conveen system can become the norm).
Barry
User
Posted 22 Apr 2023 at 17:45

Thanks for taking time to reply. I have been advised to speak to a specialist nurse. I have had no contact from an incontinence nurse specialist since the early days following surgery. Hope things keep going in a positive direction for your loved ones.

User
Posted 22 Apr 2023 at 18:47

Cuthbert,  are you still doing pelvic floor exercises and are you doing them properly. The sheath system is a game changer but they are not without issues, good advice from old Barry. I had to regain my continence on numerous occasions due to repeated dilatations. Following Salvage RT I finished up with a permanent suprapubic catheter. I always have a couple pads in my pocket and a urine bottle in the car for emergencies. 


How much are you leaking at each time , perhaps you need a tena2 or Tena3 pad. Are you able to hold the urine or does it just gush out without any warning. 


Following the dilatations  and leaking quite badly,I got kitted up with a pad and stood in the shower to see how much my pad would hold before leaking down my leg.


Thanks Chris 

User
Posted 22 Apr 2023 at 19:33

Yes pelvic floor exercises prior to surgery and daily since. Three sets of 10 as advised. May need to take additional pad as I generally manage with one Tena light per day. The big issue is leaking every time I open my bowels when not at home. It was identified I also had diverticulosis during my MRI scans for cancer. This can mean I need to go quickly, otherwise problems occur, hence issues with leakage. Unfortunately it is very unpredictable. Speaking to a nurse specialist on advice this next week. Thanks for your advice. 

User
Posted 23 Apr 2023 at 02:20
I was also identified with a diverticular following scans at time of RT. After I feel I have finished peeing, I wait a very short time and then can pass more urine. This is called double voiding.
Barry
 
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