Need some options for dealing with severe incontinence- was No Subject

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Oncas
Regular Member


Date Joined Jan 2009
Total Posts : 390
   Posted 4/18/2009 2:14 PM (GMT -6)   
Hi guys,

Beautiful weekend here in Penna. As you may assume from my signature I have some challenges looming down the road but right now this infernal incontinence is dominating my life. I'm 23 days post surgery and 11 days off the catheter and I don't have a hint of improvement. Doing the Kegels religiously (although nobody really knows if one is doing them correctly) and hoping for a sign.
The reason for my anxiety is that at 61 I really need to get back to work. The small business that I work for is very understanding but compassion does have it's limits.
Beyond the standard diaper approach to this problem are there other options for individuals who may need to get through workdays without completely sacrificing self respect.

Oncas (Jim)

Jim, I added a subject for you to help with archiving and getting answers directed to you. As far as your questions, there's the condom catheter, which is just as it says- a condom with a bag and tube on the end of it. There's several varieties of penis clamps which was discussed recently, then there's the surgical approaches, which you are no where near ready for. The two most practical is the heavy adult diaper and the condom catheter, in my opinion. Others may have something new and different to recommend

Post Edited By Moderator (James C.) : 4/18/2009 2:36:16 PM (GMT-6)


mlbsm
Regular Member


Date Joined Mar 2008
Total Posts : 85
   Posted 4/18/2009 2:33 PM (GMT -6)   
You have had MAJOR, MAJOR surgery. 23 days out is nothing in relation to the healing that will be necessary.

I helped move my house a month after surgery and ended up with a hernia.

I know it's tough, but if I were you, I would do nothing more than walking for the next 4 weeks MINIMUM.

Maybe there's something you could do at home for your business to help them? Everybody has paperwork,
maybe that or answering the phones, setting up appointments. Anything, but putting yourself back on the table.

Whatever you do, don't stop normal drinking to try to help with the wetting. Kegals and easy walking is the best remedy, you'll probably find yourself relatively dry by early summer.
DIAG. 2/08
DRE POSITIVE
PSA 6.8
CONTAINED, LEFT SIDE, GLEASON 9
LUPRON, (3 MO.) 2/28
RRP, 3/26, HOME 3/31
GLEASON SCORE, 3+4
TUMOR CONFINED TO THE PROSTATE, INKED EXTERNAL SURFACE FREE OF INVOLVEMENT. VD AND SV CLEAR AS WELL AS LYMPH NODES AND A BLADDER SECTION.
PSA 5/21 O.O1 UND TESTOSTERONE 0
PSA 6/30 O.OI UND TESTOSTERONE 10
PSA 9/30 O.O1 UND TESTOSTERONE 311
PSA 1/12 O.O1 UND. TESTOSTERONE 219
ED, BUT I CAN FIND WAYS AROUND IT.
PSA 4/10 O.O1 UND. TESTOSTERONE 119 Rx. FOR CREAM TO RAISE LEVEL.


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2457
   Posted 4/18/2009 5:47 PM (GMT -6)   
Oncas,
I started walking a little 3 days after surgery and kept increasing the distance until I got to 5 miles. I was doing Kegels on my own at first but later decide to go to a therapist. I found out that what I was doing was neither correct nor enough. The therapist uses probes to make sure that you are squeezing the right muscles. Good luck.
Age: 67
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
Dx 12/30/08
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09
Surgeon: Dr. Randy Fagin, Austin TX.
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Bilateral 10-20% involved
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx
Negative margins
seminal vesicles clean
Lymph nodes: not dissected
1st PSA test 4/7/09 result <0.1


ozvic
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 4/18/2009 6:09 PM (GMT -6)   
I was very 'leaky' the first 3 weeks and at week 4 it eased off and I became quite dry at 5 weeks......I must tell I absolutely hated it too.
I hardly did the Kegals things as I hated doing that too, so perhaps I'm just a bit lucky? My specialist did say he expected well before surgery that at 4 weeks I should be dry. He was not far off the mark.

Still have ED though 3 months down the track and told to hang in there for a year, and have .8 PSA reading at 3 months hanging over my head with instructions to be back mid July. Guess you can't have it all.

CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 4/18/2009 6:33 PM (GMT -6)   
Greetings, Jim. I know we all want to be dry as soon as possible.  My doc told me before surgery to be prepard to face issues with incontinence for 2 years.  I was lucky and basically dry very quickly.  However, one year plus post surgery, I still have issues sometimes.  I know it is easy to say and hard to hear, but you have had major surgery.  23 days is not a long time.  You will come around - give it some time.  David

Age 55
Diagnosed Dec 2007 during annual routine physical
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 positive with 2 marginal
Gleason 3 + 3 = 6
RRP 4 Feb 08
Both nerves spared
Good pathology - no margins - all encapsulated - Gleason 4 + 3 = 7
Catheter out Feb 13 - wore pad for couple of days - pad free Feb 16
Great wife and family who take very good care of me


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 4/18/2009 8:03 PM (GMT -6)   

   Jim,  Hang in there.  You are just a few weeks out of major surgery.  The normal time frame for you body to relearn how to work can be up to a year.  Believe me I know exactly how you feel.  I did well with Depends Guards for almost two years before I had to go the AUS route to get some control back.  Just do what you have to do to "try" to have a normal life till things get better.

   Good Luck,  KW


    43 at Dx and Surgery (RRP)
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.
    April 18, 2008 - Collagen injection.  Back to using 4-6 full pads a day within a week.
    May 14, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise.  Will start making conusultation appiontments for AUS after we return.
    July 14th, 2008 - AUS consultation with Dr. Morey at UT Southwestern (Dallas).
    July 30, PSA 0.00.
    Aug. 22nd, 2008 - AUS Surgery by Dr. Morey
    Oct. 6th, 2008 - AUS Activation by Dr. Morey.  Working Great, only light drips and dribbles.
    Jan, 31st, 2009 - PSA 0.00  Next test in July, 2009  


pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted Yesterday 4:58 PM (GMT -6)   
Hi Oncas,

I've been dealing with incontinence since the catheter was removed. It has steadily and very gradually been improving. I discovered an underwear solution from an earlier posting on this site manufactured by a company called Afex. I've been wearing it for about a month now and it gives me the freedom I need to live life.

Check out the following web site: http://www.uroanswers.com/afex-incontinence-management-system.aspx

One other thing, I can gauge my improvement by paying attention to how much urine collects in the bag compared to how much I have when I relieve myself normally. Sometimes I can keep the bag empty for several hours, other times, especially when I'm tired, My success rate is lower.

Wish you lots of luck and success,
Bob
Age 69, First ever PSA 7.8 taken June 2008, Biopsy July 2008, 10 of 12 cores positive, Gleason 3+3=6
da Vinci surgery December 10, 2008, catheter removed December 29 2008
St. Lukes Hospital, Bethlehem, Pa.
Dr. Frank Tamarkin

Prostate weight 73.0 grams, Gleason 3+3=6, stage pT3a
Tumor locations: right anterior apex, right posterior apex to mid
left anterior mid to base, left posterior apex to mid
extensive perineural invasion in right anterior apex, right and left posterior apex to mid
seminal vesicles negative

First post PSA < .1 Jan 16 2009
Second post PSA < .1 Apr 17 2009


RHC Jr.
Regular Member


Date Joined Feb 2009
Total Posts : 39
   Posted Yesterday 8:16 PM (GMT -6)   
Hello Oncas:
 
Currently, I'm 18 weeks RRP, and still totally incontinent. No improvement to date.
 
I'd like to echo the recommendation of pa69. The Afex product is washable and reusable. I've only had it for a couple of days, but it has improved my attitude. It has increased my comfort by removing the wetness of the diapers from constant contact with my body.  It also has increased my freedom (as pa69 has said) by being able to collect a greater quantity of urine than a diaper can hold.  Plus, the possibility of an "accident" evidencing itself onto my clothing has become almost nil.
 
The one drawback of this type of product that has concerned me in the past is that it may be "teaching" my body to remain incontinent.  For that reason, among others, I do not wear the product all of the time. In particular, I do not wear it at night, so that my body may continue to experience the sensation of a full bladder (in the prone position my bladder will retain urine) and alert me of the need to rise and go to the bathroom.
 
Good luck to you, and I sincerely hope that your incontinence problem resolves itself shortly.
Last PSA prior to biopsy  -  11.9
Biopsy  -  8/7/2008
Cancer findings at left lateral and left medial apex of prostate
Gleason score  -  3+3 = 6
Staging  -  T1c
Prostate size/weight  -  128 cc./ 99 grams
Bone and CT scans  -  9/12/2008  -  both clear
Age at biopsy  -  65         Health  -  Excellent (other PCa)  (Lift weights, play golf & tennis (incl. singles))
da Vinci RP surgery  -  12/15/2008 at Naples Hosp.
Surgeon  -  Dr. Wm. Figlesthaler
Hosp. Stay  -  1 night
Catheter removed  -  12/23/2008
Post-Op blood tests  -  2/2/2009 & 3/27/2009                     PSA  -  undetectable
Scheduled 12 weeks biofeedback, coupled with electrical stimulation  (started 3/3/2009)
 


Salty_clark
Regular Member


Date Joined Apr 2008
Total Posts : 95
   Posted Today 7:56 AM (GMT -6)   
As one who has suffered through a year of severe incontinence and tried various devices to help alleviate the pain of having to wear pads all the time I found the AFES system to be a limited alternative.  By limited I mean I was able to use it on outings with my wife, shopping at the mall,  air flights, etc and it kept me reasonably dry.  The rest of the time it proved to be a problem for me depending on how I sat down.  In some sitting positions I was fine but on standing from a setting position sometimes the briefs would get a little wet .  I found that sometimes I used the AFES on a regular day just as a respite to the pads to give me some temporary relief from wearing the pads all the time.  All in all, I found the AFES system to be acceptable and helpful but not and end-all solution.  I finally went to the final solution and submitted to AUS surgery and rectified the whole situation.  My story is in the thread "Surgical Intervention in my Incontinence Problem."  The best advice I can give you is to "keep on keepin on" and let time pass to see if you will get a natural recovery and, if a natural recovery is not apparent then look for surgical intervention.  Believe me, there is life after incontinence so just hang in there...
 
Salty

Age 75 at DX 76 on 9 May 08
DRE positive with nodule 15 Jan 08
PSA 3.8 18 Jan 08
Biopsy 11 Mar 08 Gleason 8 (4+4) on the right 3 out of 12 positive <5%. Gleason 7 (4+3) on the left 1 out of 11 positive <5%.
Bone scan and CT scan Negative 12 Mar 08
Robot Assisted da Vinci prostectomy with Dr Fagin in Austin scheduled for 30 April 08.
- - - - - - - -
da Vinci successfully completed by Dr Fagin as scheduled.
Path Report:
Gleason downgraded to 3+4=7
Tumors confined to the prostate.
Bilateral tumor on right side 5 of 10 levels and on left side tumor present in 9 of 10 levels.
Margins Negative.
Extraprostatic Extension Negative
Seminal Vesicle Invasion Negative
Stage pT2c
As far as it goes between you, me and the fence post I am cured. 
06-24-08 <0.1 Undetectable.
09-23-08 <0.1 Undetectable.
01-10-09 <0.01 Undetectable. 
04-17-09 <0.1 Undetectable.
AUS/IPP installed by Dr Morey 1/21/09 Activation 03/09/09 successfully completed by Dr Morey...All Systems GO!  99.9% continent.

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