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Urinary Incontinence

Posted , 9 users are following.

colin47
colin47

Hi

Since my prostate cancer and bladder neck incision I am incontinent. I have been given nappies from the NHS and I buy rubber pants on the internet. I've tried the rubber pants supplied from the disabled persons shops but they are useless and don't last long.

I was very conscious of wearing nappies and rubbers pants because they are bulky especially when I've wet them. Now I'm so used to them I don't care if they show.

I have to wear them now I don't think there is any chance I can improve my situation.

The advise I was given from the hospital at the time of my cancer treatment was totally inadequate regarding how I would be so incontinent.

0 likes, 10 replies

10 Replies

  • john66968
    john66968 colin47

    Posted

    HI Colin,

    i was in the same situation post op, pretty much waved off at the door of the hospital and had to arrange most of the aftercare myself . I was told 90% of patients recover from incontinance after a year , from what iv found on here and at different groups iv been to id put it more at 50%, not many are 100% leak free.

    I was on pads for 2.5,years before i finally had an artificial spihincter fitted , it was the only option , i am 99% leak free now.

    Do you have an incontinance nurse who arranges your pads , id go back and have a chat , their are solutions out there for sure

    • colin47
      colin47 john66968

      Posted

      Hi John

      I had Brachy therapy (low dose) to treat my prostate cancer. The radiation caused damage to my bladder neck, so after 4 months I needed a catheter which I had for three months. I had lots of infections including eColi twice which was savage.

      After another three months I had the catheter removed and needed my bladder neck to be cut open to allow me to wee properly. My flow rate was down to 3ml per second which was very painful.

      My incontinence started at that time. I could wee far too well and couldn't stop it.

      Even if I ran to the toilet, I still wet myself. The NHS gave me nappies and smaller pads like sanitary pads which work very well with my rubber pants.

      A nurse at the hospital gave me some condom type sticky things, but had to shave my pubic hair off first. Well after shaving I refused to stick those things on me because they looked totally inadequate. They were for dripping wee, whereas I cant help letting a bladder full go.

      Since then I've had TURP twice which has made me more incontinent. This is all nearly three years since Brachy.

      I do not want any more surgery or implants. I just want to be left alone in the penis department to heal up and get on with my sad life now. My last surgery was in Feb this year. The whole sorded affair has had a dramatic effect on my libido.

      I'm still under Urology at the hospital.

      Take care.

    • glenn77
      glenn77 colin47

      Posted

      Colin,

      Those condom catheters are designed to go with a tube and leg bag. I found one kind of good quality legbag that had a soft and flexible tubing kept me dry, and out of diapers or pull ups for a year. I wore the bag on the inside of my leg, between the knee and ankle. As it held about 19 oz of liquid, it was more than adequate. It had an easy to use lever that made it easy to empty into the toilet.

      Now, my implant has turned out to be a good solution keeping me really dry, although i sometime use a light pad when I go out just to make sure. I would have another AUS implant again should the need arise.

  • pca
    pca colin47

    Posted

    Hi Colin. I have slight to moderate urinary incontinence, and with ulcerative colitis, also have problems with the 'other'.

    I can only begin to imagine what it must be like to have to live with your condition and although I have no answer to your particular situation, do send you my heartfelt good wishes and prayers that you may be one of the 50+% of men who over time manage to recover a high degree of control and dryness.

    All the very best,

    Peter A

  • stevewet
    stevewet colin47

    Posted

    Hi Colin, I live with urinary incontinence due to diabetic neuropathy and get a supply of pads and slips via the NHS supply chain. I buy my plastic pants form ebay suppliers and have found Mylesta Nylon Pants to be the best. I too used to be very concious about them being noticeable but no longer are now, if anyone notices so what.

    • colin47
      colin47 stevewet

      Posted

      Hi Steve

      Out of all the options to control my bladder, I prefer to use nappies and sanitary type pads rather than having a bag of wee strapped to my leg as I had when I had my last TURP in Feb.

      I will even put up with having the need to use a disabled toilet to give me more room to do a nappy change. I wear shorts in the Summer so it suits my nappies and rubbers very well.

      I've had some strange looks from some people seeing me coming out of a disabled toilet, they just think you need a wheelchair to use this type of toilet.

      I had one person who was so irate, I had to explain once that I had to change my nappy and needed more room, and that not all disabilities are noticeable.

    • stevewet
      stevewet colin47

      Posted

      I tried the bag thing once. No way and have worn nappies ever since. I know what you mean about the disabled toilet. I have a radar key and always use them to change . I had alady giving me the evils at a outdoor event so I just smiled sweetly and tod her I was incontinent and had to change my pad. You should have seen hr she looked like she wanted the ground to open up and swallow her up. I walked away with a big smile on my face.

    • colin47
      colin47 stevewet

      Posted

      Hi Steve

      I have to carry what I call my "nappy bag" with me when I'm out, so that I always have dry nappies with me. I don't mind this as I can put my glasses, phone and other things in the bag instead of my pockets.

      The good thing about disabled toilets is that I can put my wet nappies in the receptacle provided and I can wash my bits if I'm really wet before coming out.

      I've tried not wearing rubber pants, but when I'm quite wet it makes my trousers wet, so rubbers are a necessity. They are ok to wear them when the weather is cooler, but during a hot Summers day they can get quite warm inside. During hot weather I try to leave my nappy off and wear my smaller panty liner type pads with the sticky backs. I've tried those without sticky backs, but they move all over the place.

      One embarrassing moment wearing non sticky backed panty liners was on holiday when cycling, I got off my bike and started walking when I felt my panty liner hanging out of my shorts. I reached down and pulled it out watched by a nearby woman, who couldn't believe her eyes.

      I sometimes wear pull-ups and rubbers if they are more convenient at the time. My Wife buys me Tena Lady, which feel nice and I find are very comfortable, less bulky at the front than the mens type.

      Interesting about your Radar key, where did you get it from, maybe its something I could get hold of. I've seen the disabled toilets, before where they have a key fob type access and just walked by as I cant get in.

      Regards Colin

  • glenn77
    glenn77 colin47

    Posted

    As I've written before, my incontinence was so bad that I used 7 to 10 Depends pull ups each day for a year. Then I went to mostly a condom catheter and leg bag for another year, until my new (and current) urologist was able to resolve the strictures in the sphincter area that caused the leakage. I then had an AUS implant (AMS 800) that keeps me dry, returning most of my quality of life.

    I highly recommend the AUS , if that is a surgical option for anyone.

  • gary84626
    gary84626 colin47

    Posted

    Hi Colin47,

    I have previously enquired on this forum about the side effects of post-prostatectomy surgery and treatment.

    I currently do not suffer from any incontinency issues, and thankfully am not at the age where prostate issues are likely to start for me. However, I have come through testicular cancer a few years ago and hence the reason for my interest in other types of cancer, and their impacts on people's lifestyles.

    I am a physiotherapist by profession and have worked mainly in private clinics over the past 8 years, working mainly with athletes, work injury patients etc. In the past year, after reading and researching all about the effects of post-prostatectomy surgery (after my Uncle cam through it), I have upskilled in the area of Men's Health and more specifically Post-Prostatectomy management of the incontinent patient . I am a UK trained physio, currently working in Australia.

    If you would be interested in organising a skype with me to discuss your situation and see if I can help you out then feel free to let me know here on the forum and we will organise a way of getting in touch privately. I am not looking for payment or anything in return. I basically want to try to help you out and put my skills to use. Unfortunately, getting access to patients with your issues is quite difficult for a variety of reasons, one of which is the lack of knowledge that therapy/exercise/advice can help. Another issue is that sufferers are often too embarrassed to seek help.

    Let me know if you would be interested.

    Kind Regards,

    Gary

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