total incontinence

chewbydo
chewbydo Member Posts: 10
in Prostate Cancer #1

57 y.o.; 5 1/2 months post daVinci prostatectomy. Anatomical problem during surgery. Protate removed in sections. Total loss of nerves on left side of prostate. Loss of approx 40 percent of nerves on right side of gland. Remain totally incontinent from day after catheter was removed. Must change Depends 4 times per day and pads 12 times per day. Often leak around leg area of Depends. Surgeon says he will wait until I am 12 months post-op before making any recommendations. Practice Kegels multiple times per day. May have urine build up in bladder only when sitting or lying down. By the time I get to toilet I cannot get undergarments down withough getting urine on waiste band of trousers. Unable to stand up and urinate. Very challenging times. Thoughts? Recommendations?

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #2
    Discussions on Incontinence

    Chew

    You got good advices in your previous thread (http://csn.cancer.org/node/249870).

    In this forum you can read many discussions on the problem of incontinence, ways of controlling it and about good outcomes. Just read them for your peace of mind.

    Here is one started in 2000;

    http://csn.cancer.org/node/135210

    Still further back;

    http://csn.cancer.org/node/137444

    http://csn.cancer.org/node/154229

    http://csn.cancer.org/node/154311

    http://csn.cancer.org/node/157243

     

    A good story;

    http://csn.cancer.org/node/188931

    http://csn.cancer.org/node/150139

    http://csn.cancer.org/node/173041

     

    VG  Wink

  • starr15
    starr15 Member Posts: 32 Member
    #3
    VascodaGama said:

    Discussions on Incontinence

    Chew

    You got good advices in your previous thread (http://csn.cancer.org/node/249870).

    In this forum you can read many discussions on the problem of incontinence, ways of controlling it and about good outcomes. Just read them for your peace of mind.

    Here is one started in 2000;

    http://csn.cancer.org/node/135210

    Still further back;

    http://csn.cancer.org/node/137444

    http://csn.cancer.org/node/154229

    http://csn.cancer.org/node/154311

    http://csn.cancer.org/node/157243

     

    A good story;

    http://csn.cancer.org/node/188931

    http://csn.cancer.org/node/150139

    http://csn.cancer.org/node/173041

     

    VG  Wink

    Where did you have your

    Where did you have your surgery? Curious to know the anatomy that made it difficult.

  • Trew
    Trew Member Posts: 932 Member
    #4
    Chew, that is what the AUS

    Chew, that is what the AUS 800 is for.  You will never be the same as you were before surgery but the AUS  can get you back to near normal.  There is hope ahead of you.

    Hang in there.

     

    I remember a few times walking along in a store with a wet spot.  Or soaking all the way through in the car and having to turn around and head for home for a complete change.  I used a lot of chucks on my car seats and every other chair I used.  that waas embrassing, too.  Just about everything after the initial blood test with the elevated psa was embrassing. 

    But an AUS will give you most of your life back.

     

     

  • viet vet
    viet vet Member Posts: 1
    #5
    incontinence

    I have the exact same problem with total incontenence after radical protatectomy in January 2011. Wearing pull-ups and diapers were shere torture causing severe dermititus (diaper rash). Finally I found an answer CONDOM CATHETERS! They work exactly as you would assume you roll a condom catheter over your penis connect it to a tube that connects either to a leg bag or a night bag. You stay dry and the rash clears up with treatment.They are not perfect or foolproof there are problems however after awhile you learn to deal with them.

  • chewbydo
    chewbydo Member Posts: 10
    #6

    Had surgery in Jackson, TN with surgeon who performed DaVinci's since 2009. He said the problem was with bladder neck overlapping prostate and almost had to remove bladder. However, claims that he was able to reconnect and was satisfied with the surgical process that lasted almost 5 hours. Expressed surprise that there has been no improvement with incontinence, but will discuss options after one year of no improvement. Pathology report: Urethra markedly disrupted.

  • Itzagift
    Itzagift Member Posts: 13 Member
    #7
    Patience, patience

    Chew,

     

    I have often read in many articles on the subject that significant long term incontinence affects only a small percentage of prostatectomy vets. Something on the order of 5%? I guess that depends on what “long term” is and one’s definition of “incontinent.”

     

    I’ve been fully loading between 3 and 5 Depends a day since the fall of 2000. Like others, I often wet thru and had to change cloths many times. Disruptive and embarrassing situations abounded. All the usual problems of a member of this unfortunate percentage.  

     

    Based on my own research and personal experience, your MD is correct. Most men (at least those who post about it) will show significant improvement over the course of a year. I’ve been thru many, many efforts to get dry (multiple MD’s) and all agreed that a year is not unreasonable before invasive procedures are indicated. Even then, there’s limited agreement as to what should be done.

     

    Easy for them to suggest a year…I dare say, not many of these Doc’s are whizzing in their underwear all day, every day. It definitely impacts one’s quality of life, yes?

     

    To read that my pathway to continence took 12 years may sound a bit discouraging but I had to get past a number of unusual medical speed bumps along the way. They all took time. First I went thru every medicine available to find out they didn’t work or I couldn’t tolerate them (Vesicare sucks, big time). Lymphodema in my left leg from the initial surgery had me doing six months of rehab to regain normal walking capability. Removal of urethra scaring from the RRP put me in the ER.  Biofeedback was interesting (electrodes stuck on nether parts and video screen showing results) but completely useless. Collagen injections also put me in the ER, so I rejected that as an ongoing option. The other “bumps” included kidney stone (lithotripter broke it up), multiple skin cancer surgeries, chemo for non-Hodgkin’s, radiation for non-Hodgkins, and heart surgery. Wetness took a back seat to living.

     

    Finally after many urodynamic tests to prove I had “intrinsic sphincteric deficiency” I had the AMS800 installed MAY 30 and it resulted in DRY, DRY, DRY!!! Just minor spotting using a woman’s panty shield. Unfortunately, the pump was badly places so I had a revision surgery and pump replacement in December. Once again DRY! Given my leaking history, I think my personal percentage number is now closer to one half of one half of the populace.

     

    Being patient about this is HARD I know, but there’s nothing other at this time than to be so. You will adjust to it. Experiment with some of the short-term methods others have posted for this problem. One or more may be of assistance in stemming your (yellow) tide eventually leading to a more permanent fix.

     

    While none of my medical adventures have been without both monetary cost and personal displeasure…being dry…it’s still a gift.

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