Some tips for beating incontinence.

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cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 10/28/2009 6:36 AM (GMT -6)   
Hi Guys,
 
First of all, this forum has already helped me immensly.  I had a robotic RRP on 10/13/09 and the catheter came out on 10/23/09.  That was last Fri.  I was unable to hold a single drop of urine over the weekend.  On Mon. I basically freaked out, had a psychological meltddown.  I don't know what I was expecting really.  They had told me I might have some incontinence for a while but I was NOT prepared for a 100% lack of control.  I was unable to contact anyone on my health team so I googled post surgery incontinence healing and the HW website came up.  After reading about so many experiences like mine that eventually have turned "dry" I settled down and began to get a grip on my emotions.  Thanks to all of you for that! 
 
NOw I would appreciate hearing about tips or tricks that might help get me down the road to beating this condition. I have over the past several days learned to do the following: (I stay dry sitting or lying in bed.)
 
1.  Carry a plastic receptacle around the house with me and every time I get up try to hold the stream as long as possible.  I did have some minor success with this yesterday.  Very minor.
 
2.  Do the same getting out of bed, trying to walk carefully to the bathroom.  I leak along the way, but this morning made it with something left for the toilet. YES!
 
3.  Do the Kegel exercises.  I have seen lots of pros and cons about this technique, but it was recommended by my surgeon.  It doesn't cost much to in either time nor effort and I believe I would be a fool not to give it a try.
 
4.  Take St. Johns wart for a mild depression.
 
I'm healing well from the surgery and back to walking on the beach here in Bradenton FL several miles every morning.  The incisions are mostly gone and I'm pain free. In a few more weeks I am going to get back in my sea kayak and back on the golf course.
 
Thank you all my brothers,
 
Steve 
 
Dx prostate adenocarcinoma 9/09 4/14 cores.
GS score 7 (3+4)
DaVinci robotic RRP Moffitt Cancer Center Tampa 10/13/09
Catheter out 10/23/09
Post-op path-GS 7(3+4), tumor confined to gland, margins, capsule, seminal vesicles neg.
Currently incontinent with ED
 
 
 
 

Modelshipwright
Regular Member


Date Joined May 2009
Total Posts : 215
   Posted 10/28/2009 6:57 AM (GMT -6)   
Hi Steve,

Hang in there, things will improve as the days pass. You might want to read my post on the Landry Protocol for improving incontinence posted on this forum.
 


Pre-Op:
 
Age 64. Diagnosed with Pca January 2009.
PSA 5.6, Gleason 3+3=6, T1c
 
Biopsy:
 
TRUS biopsies of prostate left adenocarcinoma of prostate involving part of 1/4 biopsy fragments, less than 10% of the surface area involved, CT scan clear.
 
Treatment choice:
 
Robotic Assisted Laparoscopic Prostatectomy - September 29/09. 
Pre-op PSA down to 5.28 which I attribute to visualization techniques and a new vegetarian diet.
 
Post-Op:
 
Robotic Prostatectomy - 09/29/09, back home 10/02/09.
 
Pathology - 10/14/09  Gleason Score remained at 3+3 = 6 as it was when originally diagnosed. There were no positive margins. Tumors were found in both lobes and involved 3-5% of the prostate. There was no Seminal Vesicle, Perineural, Lymphovascular or Lymph node involvement, and the bladder neck was also cancer free. 
 
Continence
 
10/16/09 - 3-4 pads a day and working on pelvic floor exercises as prescribed.
 
Potency:
 
10/16/09 - Zip, nada
 
State of mind:
 
Excellent - always positive.
 
 


MrGimpy
Veteran Member


Date Joined Jul 2009
Total Posts : 504
   Posted 10/28/2009 7:00 AM (GMT -6)   
Welcome,

You had the catheter removed last week !! Its way way to soon to have much success , plan on being near dry by New Years Eve, you will have peace of mind until then

Drink plenty of water which will make you go more, flush you out, etc

While you are going more often, practice stopping the stream 1 or 2 times while you are peeing

Walk as much as you are able to without pushing it, this strengthens the muscles, even if its only 10 minutes, do that and work your way upwards

Stay away from Coffee, carbonated drinks and alcohol, all make it harder for you to control your bladder

Pick up some Mens pads , they go in your own underwear, be prepared to change them 5 to 8 time a day at first, before you know it it will be down to 2 or 3
Stats:
Age: 52
PSA (2008)=1.9
Biopsy on Jan 09, 2009
One (1) out of twelve (12) cores was positive, plus external nodule found
Gleason Score = 3+3
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA 7/09 undetectable, under .0


cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 10/28/2009 9:28 AM (GMT -6)   
Thank you Bill.  I did read about that technique, and am going to incorporate it into my routine.  Thank you Mc Gimpy.  You are right on about the patience part.  I see there is really not much that can be done to hurry things...time and do what you can.  With all the problems the human race has, we will survive because of the infinite capacity we have for being kind to one another.
 
Steve

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4088
   Posted 10/28/2009 9:45 AM (GMT -6)   
Cocrgolfer, I might suggest that while you are walking you try to hold in you bladder almost like a Kegel. Much like holding in your stomach to try to keep it flat. Tighten in just a bit lower. This helped when I started walking. Today 1 year later a am dry enough to not wear pads at all.

Good luck with you recovery. Remember you have had Major surgery. You must heal.
Take care of yourself. and Do drink a lot of water.

Best regards
Jeff T
Cajun Counrty
Jeff T Age 57
9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable
 10th month  PSA <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next


SHU93
Regular Member


Date Joined Aug 2008
Total Posts : 328
   Posted 10/28/2009 10:31 AM (GMT -6)   
Steve,
Dont let it get to you mentally!! It will come I know it is frustrating but slowly but surely it will stop!! Hang in there!!!

LiveStrong!!!
Age Dx 37, 7/2008, First PSA : 4.17 5/2008
Second PSA After 2 weeks of antibiotics : 3.9 6/2008
DRE: Negative 5/2008, Biopsy: 6 out 12 Postive all on right side, Gleason 7 (3+4). Bone Scan/CAT Scan: Clear 7/2008
Cystoscope: Normal 7/2008, Prostate MRI: Normal 7/2008
Da Vinci Surgery 7/2008, PostOp: T2c (On Both sides), margins clear, seminal clear, nodes, clear. Gleason 6(3+3).
4 Post OP PSA's from 9/2008 to 6/2009: <0.1
 
 
 


engineer55
Regular Member


Date Joined May 2009
Total Posts : 121
   Posted 10/28/2009 4:51 PM (GMT -6)   
My advice, first off you do improve rapidly. Walk alot, sitting seems to be the worse thing, and get off the pads. See if you can go at night without the pads first, then start around the house.
Dx'ed 5/08 one core 2%  out of 12  3+3 gleason
DREs all negative
PSA was in the 3-4 range then jumped to 7
I have the enlarged prostate, on the order of 100cc.  After taking Avodart for 3 months  my
PSA was cut in half.
I did Active S for a year but concluded that I didn't want a life
of biopsies and Uro meetings.
DaVinci on 6/24/09  UCI Med Center  Dr Ahlering, long surgery based on size and location
Final was 5% one side all clear, but had a huge 90 grm prostate
Now we work on pee control, ok at night but sitting is a big problem.


TeddyG
Regular Member


Date Joined Apr 2009
Total Posts : 133
   Posted 10/28/2009 7:33 PM (GMT -6)   
Beach comber,
Give yourself a break. progress comes slowly. You should be in to kegel exercises off and on all day. Your new plumbing system including those muscles need to be trained so that they react when you aren't thinking about it, for example before you sneeze or before you stand up from a sitting position. My Doc used the expression "retraining your bladder." Do the execises while walking like you are trying to hold it in. Do them at traffic stops in the car. You will see and measure progress week by week. It took me 3 months and I noticed OVER TIME that I needed fewer large pads, then I could use smaller ones, then down to 2 a day, then 1, then....none! Three months. So once again give yourself a break.
Ted
Background:
Age 55, two teens, very fit cyclist (avg 2000+ miles per year) and weight, diet, etc. consistent with good habits. Stressful job as attorney; very supporting wife who is helping me through every stage of this war.
Stats:
2006 PSA - 1.5
2007 PSA - 2.3
2008 PSA - 5.3 (18 mos.)
2009 Jan. 20 - Biopsy 12 samples
        Feb 3 Dx 2/12 samples positive, low volume  (5% and 7-10%)
Gleason 3+4, later downgraded by second opinion at Johns-Hopkins to 3+3, but "it's still PCa" as my Doc said.
Laproscopic surgery April 9,  University of KY Medical Center, Lexington, 3 days in hospital, catheter removal April 21.
Pathology: clear margins, no cancer in prostate: told that this is very rare and Doc has only seen it in 3 out of over 1400 cases; I rearched the concept of "vanishing cancer" and found a tumor classification of tP0 and asked Doc if it applied to me. He said that it was unlikely because if a pathologist had done a much more detailed analysis of the tissue, he would likely find more foci somewhere, and biopsy found "needle in the haystack as opposed to the tip of the iceberg"; Nevertheless, it is a blessing;
Regardless of the science, my family says "miracle."
Now working w/ post-surgery issues....
 


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 10/28/2009 8:05 PM (GMT -6)   
When I first started after the catheter, I would literally pinch willy very tightly so i could make it to the bathroom from bed. As I urinated, I would try to stop it mid stream. When you can do that, then you know what a kegel feels like. That is the feeling you attempt to exercise.

Give it a few weeks anyway until you despair. Number of pads a day will be a telling point for you. I am 6 months post op, and down to less than a pad, that I still need for stress pee, when I lift something heavy or bend down.

I personally uses a Cunningham clamo for a month or so during the day when I just had to stay dry as i worked, and kegeled. Then when I quit using the clamp during the day, I was down to 2 pads.

Good luck. It will get better !
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)


cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 10/29/2009 5:33 AM (GMT -6)   
Thanks to all of you brothers in the war.  Thanks to my angel, my love, my wife, my advocate, by my side every step of the way.  The jproblem is I KNOW the statistics, which are in my favor to resolve this IC someday, I BELIEVE it will.   But you still have that little corner of doubt that won't go away until the day the last P)8^$@1 pad is gone.  This website and advice and support has helped me more with this issue than all the doctors, nurses, techs I have encountered.
 
Steve
 
Age-66
Dx-9/09. PSA 6.5. GS 7 (3+4), 4/14 cores adenocarcinoma. Stage t1c.
DaVinci robotic RRP Moffitt Cancer Center Tampa-10/13/09 (no way this betraying prostate was gonna stay inside me.)
Catheter out 10/23/09
Post surg path-GS 7(3+4) tumor <5% of gland, margins, capsule, seminal vesicles neg.
Currently IC and ED
 
 
 

LenB
Regular Member


Date Joined Jul 2009
Total Posts : 102
   Posted 10/29/2009 8:10 AM (GMT -6)   
Steve,
 
I had to chuckle at your post because you sound exactly like me one month ago.  My catheter came out 9/23/09 ten days after robotic surgery.  When the nurse took it out she told me to drink plenty of water. I did, 64 ozs. I could have been a fountain in the town square lol.  I am now starting to see improvement. I can make it to the bathroom, I cam sleep through the night and the number of pads are beginning to decrease.  It feel like an eternity but we have to be patient. My doc told me 3-6 months.
 
 Since I am exactly one month ahead of you, feel free to email me to campare notes if you ant to.
 
Best of luck,
 
Len
Age: 65
DX: 7/10/09
Gleason: 7
Biopsey: 2 chips with some cancer cells out of 30.
Robotic Surgery: 9/10/09
Cath out: 9/23/09
1st post op PSA: 10/20/09: <0.0
 
 


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3731
   Posted 10/29/2009 8:52 AM (GMT -6)   
I had mine done in July and I'm still a 3 pad per day leaker. It dropped from 7 to 3 ppd in about a month and then has just sat there. I've tried all kinds of experiments. I found that while sitting I can hold 40 ml before I start to drip. Lying donw I can hold 250 before it starts to drip.
I have filled up, run to the bathroom and watched the flow as I kegel and found a u shaped curve of flow vs. kegel pressure. Meaning, if I kegel a little, I will flow moderately. As I increase, the flow begins to drop, as I increase more it drops more, but never shuts off completely. As I kegel even more the flow starts to increase again. Maybe I have a leak that won't be fixed with only muscle control. I'm controlling continence by peeing the way Al Capone voted - Early and Often.
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/05 10 weeks, Still no activity
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/17 2 months: Still 3 pads per day.
10/5 10 weeks: Still 3 pads per day. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.


Golf1
New Member


Date Joined Oct 2009
Total Posts : 5
   Posted 10/29/2009 9:02 AM (GMT -6)   
Dear Steve,
 
We have a lot in common. I had robotic surgery on Oct 13th and the catheter out on Oct 22nd. I also had similiar problems right away with the incontinence. I was amazed just how bad it was and became a liitle depressed about it even though I read several arcticles, books, and refered to this forum which all told me the same thing that it takes time. This forum has been helpful to me and this is my first post as a new member. I have practiced the Keigel execises continually and recently after reading about the Landry exercises which are similiar, started doing those as well. I will tell you I just started to notice an improvement the last two days and even better today. I can only repeat what others have posted that it takes time be patient and hang in there.
 
 
Age:50
DX: 7/02/09
Gleason: 6
Biopsey: 2 chips with some cancer cells out of 12.
Robotic Surgery: 10/13/09
Cath out: 10/22/09
 

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3731
   Posted 10/29/2009 10:10 AM (GMT -6)   
Hey Guys,
I'm an engineer and engineers can't do anything without taking data and plotting it on a spreadsheet. I recorded how many pads I used each day. I actually weighted a few on a Mettler lab balance so I could estimate the fullness of a pad and record fractional numbers.
I then made an Excel program with Date on the X axis and PPD on the Y axis. Fair enough, but here comes the lunacy part ... I also included two trend lines: a linear forecast and a 2nd order polynomial to predict when I would hit 0 ppd. Unfortunately, the second order curve indicates "never" and the linear predicts some time in 2010. Oh well. They say patience is a virtue.

Contact me if you want the file so you, too, can plot your data and hang the chart on the fridge.

Jeff
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/05 10 weeks, Still no activity
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/17 2 months: Still 3 pads per day.
10/5 10 weeks: Still 3 pads per day. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 10/29/2009 1:52 PM (GMT -6)   
Lots of good advice here to which I would add walk, walk, walk. This strengthens the pelvic floor and in my doc's opinion is more important than kegels.

Live, live, live. You are alive -- the cancer is cut out and your body is healing more every day. Wet pads in your pants will never be fun but focus on your wife and family and what IS fun. Getting better with time is almost certain, so pass that time as happily as possible.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day

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