Living with total incontinence after prostatectomy

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olslyfox
New Member


Date Joined Oct 2007
Total Posts : 11
   Posted 10/9/2007 4:09 PM (GMT -7)   
I had my prostatectomy 2 months ago, and still have total incontinence. I am still hoping this will improve, but until then, UCDs are in order.

I am posting this in hope of helping others in my predicament.

I found out real quick that I do not like diapers of any kind ( too much liquid flowing, too much squishiness when sitting, and too much stinkiness).

My solutions to date: (WARNING: contains some MALE specific terminology)

Summer daytime wear when not sure about bathroom availability (golf course?): texas catheter, snugged up a little with stretch wrap and tape (just in hope of preventing backflow for a few hours), draining almost sideways into a disposable urine bag, supported (hung) by a shoestring from waistband of underwear (a jockstrap works well), with same shostring tied around thigh to hold it in place, then urine bag is folded upward in half, secured by a small strap.

This can be worn with knee length shorts, needs to be emptied every couple of hours, and has lasted for 24 hours, although I usually remove and clean it before bedtime.

Wintertime wear (long pants) when not sure about bathroom availability, same texas catheter , but use a longer plastic tube to a urine bag strapped to the calf.

Daytime when bathrooms are available: a CVS pharmacy male guard (pad), folded in half over the penis head, wrapped securely with a couple bands of tape (1 near the head, the other at the shaft base). I use painters tape from LOWE'S... a lot cheaper than Johnson and Johnson products.
The tape helps prevent leakage and pullout. Wear this with BRIEFS. The adhesive on the pad, and the tight fitting briefs, and the taped sheath all work to prevent pullout. I drink about 60 oz daily, and these pads last 2 to 3 hours (a stretch). I watch the clock and change every 2 hours ... very little odor, no squishiness when sitting, not noticeable through outer wear.

Nighttime : Same pads taped into a sheath, but instead of regular briefs, I wear Serenity Tena brief style underwear, in case overflow happens.
Overflow rarely happens for me ... I tend to retain some urine when laying down, and I will awake with an urge to go every 2 to 4 hours ... the sheath will be pretty full, and will be changed at this time.

While all these solutions probably won't work for everyone, maybe they will be helpful to some. I don't enjoy being incontinent, but I can live with it this way if I have to.

kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 10/9/2007 7:00 PM (GMT -7)   
Hang in there. Your only two months out. Have you tried a biofeedback therapist? It will help you make sure you are hitting the pelvic floor muscles.

Let us know how things go for you.

KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 8th Started Detrol LA to see if it helps with the leaking?
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
   


olslyfox
New Member


Date Joined Oct 2007
Total Posts : 11
   Posted 10/9/2007 8:22 PM (GMT -7)   
Yes, KW, I have been doing Kegels after my 1 week catheter use, but I wasn't doing enough of them.
I started Biofeedback therapy 2 weeks ago, so now I have a pattern to repeat between therapy sessions.
She says 6 to 8 weeks before any noticeable change.... but then she hope to see exponential improvement (that would be nice).

Like you, we caught the cancer early (4.3 psa), all on left side, all surrounding tissue is clear. Glad to not need Chemo or Radiation, but my doc says my incontinence puts me at the bottom 5% of normal side effects.

IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 10/9/2007 8:27 PM (GMT -7)   

Hi  ~ olslyfox,

 

Welcome   to…   ~ HealingWell ~

 

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IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 10/9/2007 8:40 PM (GMT -7)   

Hey olslyfox ~

‘So glad you’re with us!  :-)

Please feel comfortable to share as if you’ve always been here!  The more information you are able to share with us, the better your new friends on HealingWell can respond to you.

Finally, a very warm welcome to you!
Keeping you close in our thoughts and prayers.

All the best,


"Idaho" ~ Barry

 

Da Vinci Surgery July 31, 2007… 54 on surgery day
PSA 4.3  Gleason 3+3=6  T2a  Confined to Prostate

1st PSA 0.04 (undetectable) 9/11/2007

My web site: http://pca-info.blogspot.com


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 10/10/2007 7:03 PM (GMT -7)   
Olslyfox, Just hang in there. Hope things get better soon. But, if not......you can handle it. There will be times when your ready to give up. But just remember things could always be worse. A little leaking can't kill you!
Will be looking to see how you do.

KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 8th Started Detrol LA to see if it helps with the leaking?
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
   


olslyfox
New Member


Date Joined Oct 2007
Total Posts : 11
   Posted 10/10/2007 8:23 PM (GMT -7)   
Thanks for all your support.

Apart from the brief and vague instructions to do Kegels , my doctor gave me NO information on how to live with this problem (pad/diaper options, available cuffs, catheters, sheaths, recommendations, local suppliers, etc.). I was left to discover all this myself. I did get some ideas from the internet, including some info from other prostatectomy survivors.

So as I got some help from ideas gleaned from others, I am offering what little I learned.

It's great that we have forums like this for helping and sharing with others. :-)

War-eagle
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 10/11/2007 4:30 AM (GMT -7)   

olslyfox,

Thanks for your post. Great ideas. I still fight the leakage problem every day. Kagels did some good for me, but still depend on the "Depends." But on the upside, I like the smell of fresh baby powder after the changing. On a more serious note, one man to another, does the bag effect your back swing? If you don't laugh about things then we would all be cryin'. I love golf but haven't played in over 18 months. Shoulder surgery on top of DiVinci not a good combo. I will try your ideas and report back. You have been a great help.

War Eagle to all.

Walt


Age: 54
PSA 43 7/2005
Biopsy 12/14 Gleason 7 & 9
Divinci 9/2005 - spread to bladder
HT - 10/2005 (Eligard every 6 months)
RT - 10/2005 (38 treatments)
PSA 0.12 to 1.9 2/2007
Bone Scan and CT 4/2007
Casodex 4/2007
Spread to Spine (L4 & T5), rib, and pelvis
Zometa infusions 4/2007
PSA 4.9 8/2007
PSA 4.9 9/2007
 
"I will persist without exception - I will find a way where there is no way"

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