Four years and counting

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I have been incontinent now for wel over four years. I have accepted my inccontinence cannot be ured and adapted to a life of incontinence pads and inco pants  adult nappies and plastic pants during the day and adult nappies and plastic pants at night. Anyone else in the same boat and ha shad to learn to live with incontinence.

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  • Posted

    Steve,

    I gather from your nouns that you are in (or at least from) the UK.  I became incontinent, totally, after GreenLight laser procedure for my medium lobe BPH in March of this year.  It led to a second procedure in May to clean up the mess left by the GL procedure.  Then months of totally ineffective physical theraphy including electrical stimulation via an anal probe (a not-so-magic wand).  I learned of the existence of an artificial sphincter called the AMS 800 that was developed over 40 years ago.  Over 150,000 of them have been implanted since then.

    I asked my local urologist about that solution and was told that they wouldn't even discuss it until at least a year after TURP procedures.   I was not satisfied with this answer, and discovered that there is a surgeon at a university medical center in a nearby city who does this surgery.  I made the contact, set up an appointment and went to it prepared with a written description of everything that had led to my situation, and all the events including all the PT, etc.  This second doctor spent nearly an hour with me, and said he was certain that I had my sphincter(s) damaged by the GL procedure, and that I would never recover natural continence.

    He agreed to perform the surgery, and I am scheduled to have the AMS 800 implanted one month from today.  After the surgery, I will have to wait approximately 6 weeks before the device is activated.  I have talked, via phone, with two men who had this procedure done, and they are higly satisfied with the outcome.   Data show that  92-93% of men who have had it would recommend it.

    I know that this will not return me to where I was before the GL procedure.   Before then, even at age 77, my wife and I still had a good sex life.  That all stopped last March  with the GL procedure, as continuously leaking like a sieve doesn't leave any reasonable possibility of sex.   I at least look forward to being dry, or mostly dry again by sometime in January 2017, and not having the skin irritated by constant exposure to urine.  And, I can stop having cases of Depends pull-ups and heavy duty pads shipped to our home.  Having spent well over $1500 already for treatment and incontinence supplies, most of which is not covered by insurance, I am looking forward to being able to jump in the car and run an errand without all the planning it takes today.

    I would be interested in hearing about your situation, your age, what caused your condition, and whether there is a possibility of the AMS 800 surgery for you.

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    • Posted

      Yes, I plan to.  A man from my city had the procedure, and said he stayed overnight (one night), and within a few days was able to drive, and move around carefully.   I let you know my experience next month.

      My doctor has some requirements, don't remember them all.  One question he asked was whether I am diabetic (I'm not).   Hope to be filling you in a month and 2 or 3 days from now.

      In the meantime, go to YouTube and search for AMS 800 surgery if you're not squeemish.   Or just search for AMS-800 artifical sphincter. The company has a lot of information on-line.  (Sorry I can't link it here due to site rules.)

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    • Posted

      i am 54. My incontinence is caused by nerve damage from having diabetes for a few years before it was diagnosed. I only sought medical advice when I became both impotent and incontinent at the more or less at the same time. I was found to be diabetic and once that was stabalised I saw a urologist and had various tests done only to find that the damage was done.
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    • Posted

      Hi Glen, according to national institute of diabetes and digestive and kidney disease For the urinary system to do its job, muscles and nerves must work together to hold urine in the bladder and then release it at the right time. Nerves carry messages from the bladder to the brain to let it know when the bladder is full. They also carry messages from the brain to the bladder, telling muscles either to tighten or release. A nerve problem might affect your bladder control if the nerves that are supposed to carry messages between the brain and the bladder do not work properly.

      Can I give you this few tips on stimulation of nerve that connects to your bladder and spine,  every part of the skin has a designated specific area where reflex arc is located, once the same is determined, proper stimulation of it will greatly enhance sphincter muscle control to your bladder. Can you try this few steps to stimulate the inner ankle going down the foot, do it efficiently for at least 30-mins to an hour 2-3 times a day  and try to feel the change in just a week or two. Looking forward know you being dry and not having the skin irritated by constant exposure to urine and  stop having cases of Depends pull-ups and heavy duty pads shipped to your home be glad to know you  being able to jump in the car and run an errand without leaking. Please let me know if youre improving after 2 weeks of everyday stimulation, regards.

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    • Posted

      Steve,

      I'm willing to try anything, but having done months of PT and using the stimulation of a Tens device with anal probe with no improvement, I would not be hopeful.   From the other urologist I've been examined by and treated by, I've discovered I have a complex stricture in a very difficult position, right at the sphincter, and probably involving the sphincter.   I've attached an image from a specialist I saw a couple of months ago.  The bladder was filled with contrast and I was voiding when it was taken.

      This all star with the GreenLight Laser procedure in March of last year.

      Glenn

      Glenn

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    • Posted

      I have been diabetic from 2001 impotent around 11 years and incontinent for 7 years it has got worse over the last few years to the point I need to wear adult nappies 24/7 but I would rather wear them and have a normal life I was a bit worried at first about wearing them but now it is second nature 
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  • Posted

    Thanks Ken, I understand your situation.  I would add to my previous comments, I learned in another discussion on this board that another patient, ken41731, is also having the same surgery the same day that I'm having mine.  Since he lives about 250 miles away from me, I assume his will be at a different hospital.

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  • Posted

    I am 29 and have remained bowel and bladder incontinent since a car wreck 5 years ago. I still get disgusted with myself every time I wet/soil. The humiliation has never gone away for me.
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    • Posted

      Hi

       According to national institute of diabetes and digestive and kidney disease For the urinary system to do its job, muscles and nerves must work together to hold urine in the bladder and then release it at the right time. Nerves carry messages from the bladder to the brain to let it know when the bladder is full. They also carry messages from the brain to the bladder, telling muscles either to tighten or release. A nerve problem might affect your bladder control if the nerves that are supposed to carry messages between the brain and the bladder do not work properly.

      Can I give you this few tips on stimulation of nerve that connects to your bladder and spine,  every part of the skin has a designated specific area where reflex arc is located, once the same is determined, proper stimulation of it will greatly enhance sphincter muscle control to your bladder. Can you try this few steps to stimulate the inner ankle going down the foot, do it efficiently for at least 30-mins to an hour 2-3 times a day  and try to feel the change in just a week or two.

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  • Posted

    Hi Stevewet Sport here and as you know been incontinent about 15yrs.The only thing is youse diapers.Mine is due to being a diabetic.
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    • Posted

      Hi , according to national institute of diabetes and digestive and kidney disease For the urinary system to do its job, muscles and nerves must work together to hold urine in the bladder and then release it at the right time. Nerves carry messages from the bladder to the brain to let it know when the bladder is full. They also carry messages from the brain to the bladder, telling muscles either to tighten or release. A nerve problem might affect your bladder control if the nerves that are supposed to carry messages between the brain and the bladder do not work properly.

      Can I give you this few tips on stimulation of nerve that connects to your bladder and spine,  every part of the skin has a designated specific area where reflex arc is located, once the same is determined, proper stimulation of it will greatly enhance sphincter muscle control to your bladder. Can you try this few steps to stimulate the inner ankle going down the foot, do it efficiently for at least 30-mins to an hour 2-3 times a day  and try to feel the change in just a week or two.

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