Severe Incontinence after Prostatectomy

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Looking for some advice as having problems with Incontinence after Da Vinci Prostatectomy 7 weeks ago. I was aware that this would be a problem but surprised at the flow problems as far more severe than when I had a TURP. The pressure is so great when I stand up or cough etc, my urine flows over the top of the pad and down my leg as the pad will not absorb the fast flow, but would take the quantity. Continence Advisor and District Nurse have put me on sheaths with a leg bag and it has taken ages to get the right product as I blew pipes off with pressure and forced sheaths off. Now using additional sticky tape to hold sheath on but cannot go a whole day.   Can do my Pelvic Floor Exercises but will not hold flow back, and am concerned that with sheath system I cannot get myself trained. At night in bed I am nearly dry using pad within a nappy and can get to the loo and let water go. In the day I cannot get out of my chair without passing water as standing up.    Also have a slight UTI and if wear pads too long get infection below foreskin plus Diarrohea every 3 or 4 days.  Any advice or comments appreciated, as not sure what to do.

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  • Posted

    Sorry about your issues. I don't know a whole lot about incontinence, but have they mentioned self catherization (CIC) to you? I would think that CIC at several strategic times during the day might just take enough pressure off your system so that you could use your sheaths and leg bags with more confidence. I would keep experimenting with different sheath manufacturers an setups until you find something optimal. Later, when things hopefully improve, you might be able to drop CIC either altogether or just use it as an occasional aide.

    Jim

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    • Posted

      Thanks for your reply Jim. I was self cathing for quite a time before this op, and my Prostate had swelled again and stopped me getting a catheter in.  They wanted to do another TURP and I refused and had Prostate with Cancer removed. The volume is not massive, just discharges in seconds without warning. I think experimenting is the way forward so will see what happens.

      David

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    • Posted

      I would assume that self cathing would be much easier now after your prostadectomy. Not a solution all by itself, but might make your life a lot easier with the external condoms, etc. by relieving pressure completely whenever you want to as opposed to waiting until the pressure really builds up.

      Jim

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  • Posted

    Sorry you're dealing with this.  I was in a similar condition for two years after Green Light for BPH.  I sleep on my back, so I would have enough urine accumulate to wake me up.  But, during the day it all ran out unless I sat in a recliner.   I did months of kegel exercises, and they were totally unhelpful.  I finally went to a different doctor who did a cystoscopy that revealed that I had a complex stricture in the external sphincter.  I was never going to regain continence.  Clearly my first doctor concealed his FUBAR from me.

    I leaked so much that my Depend brand pull up could be soaked in an hour during the day if I was up and about.  So, I started trying external condoms.  I tried different versions of Coloplast Conveen sheaths.  Some of them were too sticky, and I would have an awful time getting them off.  The best, and I recommend it, is the Coloplast Conveen Optima.  I used a skin prep before installing to make it easier to remove at night.  I never had a problem with one coming off.  The only collection bag that was worth a damm was made by Hollister.  The also have a soft silicone tube that you can cut to the right length with scissors.  I wore the bag with one strap below the knee, and one at the ankle.  The bag has a flip valve at the bottom that you rotate 90% to open.  I would place the foot with the bag on the edge of the toilet, drain it, close the valve and go on my way.  The Hollister bags have 1" wide straps that are fairly comfortable.  I was able to use one bag for a month by flushing it with water each day.  I once hooked the bag to a longer tube, and was able to keep the condom catheter on overnight.

    I probably have $200 or more of unused catheters and other supplies I will give to anyone in the US who can use them.  (The catheters are 35 mm size.)

    Fortunately, I was finally able to have an AUS (the AMS 800) installed, so my life is pretty normal now. I will always have an appreciation of how much of a bother a sheath and leg bag is.

     

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    • Posted

      Thanks Glenn, Coloplast Conveen Optima Standard is best so far, but not hit right bag yet, so will see if Hollister is in UK.   My recliner chair is my best sitting position, but as soon as I get up, i flush down before I am upright.  Do you know of any good nappy / diaper pants which are tight round the legs which would keep some in as they used to have them in UK, but not now available on NHS. Will read up on your AUS (AMS800) if I can.

      David

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    • Posted

      STM,   I only used Depends, which I had to pay for, as medicare insurance in the US doesn't cover any of that. (I spent about $2,000 for incontinence supplies.) They are pretty much water-tight, and cost around $0.50 each in the US as I recall.  There are 5 separate elastic strands around each leg, and over 20 around the waist.   I did a search, and and see that they are available in the UK at £ 0.76 each for large and extra large, and  £ 0.55 for S/M.   The UK website offers samples for evaluation.

      Glenn

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    • Posted

      I see that you have Costco in the UK.  That's where I got my Depends in the US.  They were shipped in a case of 80+ right to the door, making it really convenient.

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