Time for a sphincter?

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cowboy bob
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 9/13/2007 4:56 PM (GMT -7)   
I am 57 and had my prostate removed on June 27, with my catheter removed a week later.  I have continued to have what I call really bad incontinence in that I leak constantly throughout the day, only being ok when sitting or lying down.  I do three sets of kegels daily and try to limit my intake of fruit and caffeinated sodas.  I wear a heavy duty Depend and stuff toilet paper in it so that I only have to change the toilet paper and not the Depend.  As far as that goes, the toilet paper is soaked usually after about 20 minutes, meaning I am in the bathroom getting "cleaned up" about 40 times a day.  I am sick of this and will be seeing my urologist in a week to see what can be done.  I know both medicine and artificial sphincters are possible solutions but my doctor has said that  if I take medicine for example I'll never know if I'm better naturally, or if it's just the medicine working.  Is it too soon to seek an alternative?  I've been leaking bad for almost three months.  I was wondering if I have an artificial sphincter installed, and continue doing kegels, can I get better while the sphincter is in?  I need help! 

lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 664
   Posted 9/13/2007 9:42 PM (GMT -7)   

 

Bob

I didn't have long term leakage problems, but I feel how upset you must be. I saw a physical therapist who gave me the confidence to move on.

Based on the comments on this forum, you are not yet into a long term in-continence situation.

As upsetting as this clean up problem is, there are other guys here who tell stories of major changes at four, six, eight months , even a year past surgery.

I think you are a long way from medication or surgery to correct this problem.  Sometimes we have to deal with the frustration we feel. Your doctor should tell you to wait and be patient.  Yeh, that's just what we want to hear.


 
Biopsy 10/16/06
T2A,  PSA 4.7
Gleason 4+4=8 right side
adrenocarcinoma of prostate
DaVinci Surgery 01/16/07
Post op report,confirms Gleason4+4=8
no extra extension/invasion identified
age 65
Back on the golf course...
90 day PSA  less than 0.01 (undetectable)
Six Month PSA still undetectable
Beginning injection therapy for ed (08/07/07)
 


pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 424
   Posted 9/13/2007 10:54 PM (GMT -7)   
Bob,

As lifeguyd said, you are not really outside the parameters of normal recovery yet. And I know the frustration. I wanted to be one of the 1-2 week guys... But leaked like a sieve will walking/standing for a little over 8 weeks. 5-6 heavyduty pads a day. I was doing house construction and going up/down a ladder for 3 days... leaking like a sieve and even changing pads while I was still on the ladder. Then overnite, I nearly fully dried up to only a minor spirt once in a while... barely wetting a pad a day. I do not fully understand why we seem to all recover from this at such widely varying times and I have heard than many experience the same "overnite" change... not a gradual recovery... I think that is why it gets so frustrating... You never see a slight day to dat recovery... nearly no recovery and then boom, major recovery.

Anyway, I never wore the underpants and just used the male guard pads... I could swap these out while in a car, on top of a ladder, sitting at a desk, or even walking... With jockey shorts and pants that are not too tight, you can just reach in, pull out the wet pad and insert a dry pad. I always had a dry pad in my back pocket and a ziploc to put the wet one in for later disposal. That took a lot of the hassle of changing and worrying about the pads in general... not let my life revolve around the pad...

Kepp up the kegals... Verify that you are doing them "correctly" in that you are actually excercising the correct muscle. I also added in some of Cedar Choppers elevator kegals... and I also believe the ladder work helped also... an equivalent could be add stair excerciseswhich I think bluebird has talked about. A lot of this can be found in her "helpful links"

Anyway, try and keep a positive outlook, patience, and continued excercise... you can always check with your doctor at a time frame when other measures may need to be considered.

God Bless and praying that you will soon experience that overnite recovery!

Ray (aka pasayten)
Age 59 y/o - Last 3-4 years of annual general health checkups - PSA 5-6
3/13/2007 - 12 point biopsy - Left 0/6  Right 1/6 Gleason 3+3 Diagnosed as T1c
4/24/2007 - DaVinci performed at Virginia Mason hospital in Seattle
5/2/2007 - Catheter Out! Final pathology of Gleason 6  T2c Nx Mx,   approx 20% of prostate involved, positive margin, but only at 2 focal points.  
6/28/2007 9 weeks post-op incontinance... Overnite, went from 4-6 soaked pads a day from prev 8 weeks to 2 barely wet pads a day.
7/12/2007 11 weeks post-op  Minimal leakage...  one small pad a day
7/18/2007 First Post-Op PSA...  0.01 !!! 
7/30/2007 ED improved to about 60% erection and "functional". Only using 50mg Viagra generic every 2-3 days.
 


cowboy bob
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 9/14/2007 9:06 AM (GMT -7)   
To lifeguyd and Ray,

Thank you for setting me straight. I needed to hear that, and I'm sure I'll hear the same from my doctor next Thursday. Ray, I'm sorry you had to go through it too, but I sure like the sound of that overnight recovery. I'd love for that to happen.

I do hope I've been doing the Kegals correctly. Because of the fact that when I do a Kegal I often get a little squirt of urine, I do them all on the toilet. And when I do one I feel my "gas passing" area contract and my you know what pulls in a little. I hope that's what to have happening.

Thanks, guys. I will continue to stay the course. All the best to you.

cowboy bob
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 9/14/2007 9:15 AM (GMT -7)   
Ray,

p.s. How do I get to "helpful links?" I want to read what bluebird had to say about the Kegals.

Thanks,

cowboy bob

pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 424
   Posted 9/14/2007 10:54 AM (GMT -7)   

Bob,

The main link is:

http://www.healingwell.com/community/default.aspx?f=35&m=719759

It covers tons of stuff, subjects, and personal journey links.
 
The kegal ones are:
Cedar Choppers:
Kegal Help:
To pee or not to pee:
...and many more under the *Urinary section.
 
Hope this helps!
 
Ray (pasayten)
 
P.S.  Got horses?  I have a couple and lovemountain trail riding and packing...  I can get back in the saddle late October...  6 months post op...  :-)

Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 9/14/2007 2:05 PM (GMT -7)   

Bob:

Helpful Hints is second from top.

Dutch


Diagnosed Feb 2001  (Age 65)  Currently 72
PSA 4.8      Gleason 3+3=6      Stage   T2b
Completed Proton Therapy @ Loma Linda - Aug 2001 - No side effects.
6yr PSA - 0.19
Our responsibility now is to educate men about Pca, PSA and the importance of early detection. 
 
 
 


lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 9/14/2007 10:31 PM (GMT -7)   
A tip we read on proper Kegal-ing was that it was as if you were trying to pull water up a straw when you contract the proper muscles.

The other thing cowboy, is that you really need to use the male underguard pads so you won't be changing yucky, falling apart toilet paper 40 times per day. At first Bob used the Depends underpants along with the pads . . .that way he only changed the pad most of the time. Then as he got more used to the volume involved, he did away with the underpant type. You are worth it!

;o) Linda & Bob
Bob (61) - Laproscopic Prostate Removal Sept 27, 2006.
2 of 12 malignant biopsy samples - gleason 3 + 3 = 6.
 
Pathology - cancer completely contained, even a second more aggressive, previously undetected cancer)
PSA UNDETECTABLE Nov 2006, Feb and May,2007.

Bob also has two secondary conditions -- Polycythemia (elevated red & white cells & platelets) and . . Myelofibrosis) -- If anyone has experience with or information on these, please email us.


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 9/15/2007 7:02 AM (GMT -7)   
    Bob,  Please take your time.  Go back and find KW's Journey.  You will see you are not alone in this.  I am one of the few long time leakers here.  I would highly recommend finding a Physical Therapist that uses bio-feedback to treat male incontenance.  I know the pads can be expensive.  But, I would not use the toilet tissue.  I can imagine how big of a soggy mess that is.  The pads are designed to wick the moisture away from the skin.  I would also really try to eliminate caffeene.  I know it is hard to do.  but I have managed by drinking De-caff coffee, tea, and soft drinks when I want something with some flavor in it.  But usually during the day I stick with water.  I would also suggest getting a check book type of calendar to track your pad usage.  The way I do it is that when I change I mark a dot if the pad is only damp or half used.  I mark a slash if it is full.  This way I can actually see if my pad usage starts to drop.
 
    I hope you find this info helpfull.  Just trying to help you out since I am dealing with this also.  Personally,  I will not consider a surgical fix until I reach 18 months post op.  Or at the time my PT says the pelvic floor muscles are as strong as they are going to get and I still leak more than I want to manage.  At 44 I still do not want a artificial device implanted in me. 
 
    Good Luck,  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.
   


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 9/15/2007 4:04 PM (GMT -7)   

Cowboy Bob,

Don't panic just yet......
         Your name reminds me of the movie/Sci-Fi books
              -  "Buckaroo Bonzai Across the Eighth Dimension." cool

I wish Ms. Bluebird (Our moderator/navigator, she is on vacation.) were here to drop some quotes from Dr. Walsh's book.
They go something like this: 
"DO NOT PRCATICE KEGAL EXERCISES WHILE SITTING ON THE TOILETTE."

You have to practice kegals while standing and interrupt the stream to isolate the muscles.
You can do "kegal "exercises" while sitting and driving or sitting and watching TV - or walking - but Dr. Walsh said something concerning urinating & sitting & Kegaling was not good... 
The Devine Ms. Blue will return, soon.

I (really do) suggest that you practice:
     -walking up and down stairs while nude with a styrofoam cup.....  It is humbling at first...
The majority of men seem to regain continence between weeks 12 and 16.
If you do not have some control by week eight, I would seriously consider a biofeedback therapist/coach.
My coach and other such therapists reported here were very helpful.

Instead of toilette paper, the 12 oz. women's incontinence pad set at 90 degrees to and under the penis is a better removable liner for your Depends than toillette paper.
I was fully incontinent at work from weeks 5 thorugh 6 and went through many pads daily at this time.
I told no one at work and worked on my feet around people the entire time.
I had to change the 12 oz. pads -early in the day- every two hours -and then less often as the day went on.

In the absence of Ms. Blue, a thread I started earlier might be of interest to your challenge.
  If this pasted link does not work, it is found in Helpful Hints at the top of the page. 
  Scroll down to the second or third post and it is indexed under "Other Topics."

"Zen and the Art of Symphonic Continence"


It ends with a nice discussion by KW or Berb or Gene about waiting as long as possible for artificial sphincters.  I heartily recommend their threads on incontinence.
CCedar
ICTHUS!

 


2 Years of PSA between 4 and 5.5  + Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.  +  Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.  + Confined:)
Pad Free @ 14 weeks.  Six Month PSA <.003  :)
At 6 months, ED treated with Pump Exercises & 50mg Viagra Daily
Texas Hill Country FRESH Produce Department Manager
Have you had your 5 colors today?


cowboy bob
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 9/16/2007 9:14 PM (GMT -7)   
Thank you all, so much. The specifics about the kegal's, the toilet paper vs. pads, and the caffiene will be really helpful. I see my doctor this Thursday again, and I plan on telling him I will continue to hold out for natural improvement. I've gone nearly three months like this, and I guess I can go a little longer. Boy, I hope it's not too much longer tho.' (: You all are the best.

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 10/5/2007 5:37 PM (GMT -7)   

Hi  ~  Cowboy Bob & Loved Ones,

 

Caring Enough to Share…..  

A   “Special”  Warm Welcome  to  You!

 

This is truly a great forum!!! ~ “You” have joined! You are now part of our forum family ~ a group of wonderful individuals who are so willing to share their journey.

 

Thank you for joining all of us on this road to HealingWell…..

 

KNOWLEDGE IS POWER... and POWER conquers fear

 

(Direct Link ~ just click on the title below and a new window will open!  

Reminder … click on the REFRESH icon once you get there)

Prostate Cancer Resources, Helpful Hints, and Topic Thread Links

               (Located at the top of page 1,2,3… 65,67… on the Prostate Forum : )

 

Invitation to New Members… Welcome to HealingWell (Special Request)

 

 

v      IdahoSurvivor ~  Moderator for Prostate Cancer Forum

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bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 10/5/2007 5:44 PM (GMT -7)   

  tongue    Yippee!! (lasso circling overhead)

 

Hi Cowboy Bob,

 

We found you   yeah !!!!!!

It’s taking me time to get caught up after being away for 16 days….  Whewwww….  (sheesssss back!!)

 

Isn’t this HealingWell ~ extra special when your healing/recovering with friends who know where you’ve been and where you’re headed.  This is a POWERFUL PLACE TO BE…. And I see it’s working for you from a statement on a recent thread you started.   

 

Partial Quote from cowboy bob: …..a few weeks ago, after getting notes of encouragement from many of you I took on a new attitude (and a good attitude) of patience.

 

Stay true to this and you will have a smoother journey.  It take time to heal and recover.  You must listen to your body!!!  We are so excited that you joined our circle of friends ~ walking together.

 

Keeping you close in thoughts and prayers as we all move forward.

In New Friendship ~ Lee & Buddy

 

  tongue   P.S.  We need a signature ~ okay… as time permits the links above will help you!!!

 

As Wittler would say!!! STAY STRONG

 

Post edited to add information


mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)

Post Edited (bluebird) : 10/6/2007 12:47:57 AM (GMT-6)

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