how to understand road to continence?

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weston
New Member


Date Joined May 2010
Total Posts : 15
   Posted 5/26/2010 2:53 PM (GMT -6)   
I would appreciate words of wisdom regarding how to achieve, and more importantly what I might expect, in working to regain continence. It has been two days since removal of my cath. I wear pads during the day (what pads are the softest?) and a diaper at night.  I do my kegal excercises 5-6 times per day.
 
At this point, every time I get out of my recliner, I start to spurt.  By time I get to the bathroom, about half the urine is out; the other half comes out in a thin(?) stream.
 
At night, my bladder wakes me up 3-4 times; same process - spurting while walking to the bathroom.
 
I also experience a pretty constant 'drip'.
 
Is there anything else I can or should be doing?  Are the kegal excercises enough that (hopefully) one day they magically achieve their goal?
 
Thanks for your thoughts.
Mike, Weston, Florida
Dec, 2008: PSA 2.0
Feb, 2010: PSA 2.7 / Lump on prostate
March 2010: Biopsy / Gleason 4+3; 40% one side
April, 2010: Bone scan clear
May 14, 2010: DaVici Prostatectomy (age 63)
Pathology:
-Scattered small foci of prostatic adenocarcinoma Gleason 4+3 (right lobe)
-proportion of P gland invloved by tumor = 3%
- seven benign lymph nodes
- P size: 4.6X3.7X3.3 / 40.5 grams
- pTNM Stage: PT2a / regional lympth nodes PN0
               
May 24, 2010: Catheter removed!! ED and continence journey started!
 


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4849
   Posted 5/26/2010 2:56 PM (GMT -6)   
two days since removal of my cath smhair
 
Come back in two MONTHS and tell us the status idea
 
But really - you have a ways to go and what you're seeing is normal for you. You'll learn to concentrate more as you're getting out of the chair and will gain more control as time goes on.
Age 55   - 5'11"   215lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
05/18/10 - 24 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 5/26/2010 3:22 PM (GMT -6)   
Hi Mike, and welcome.  When I lived in South Florida, the area which is now Weston was still part of the Everglades, on the west side of the canal which separated civilization from the swamp all the way up to PB county...things change.
 
Anyhow, good luck with your recovery journey.  I'm temped to repeat what Steve has written—to come back in 2 months—because he is basically correct.  The average full recovery after RP is around 4 months.  It seems like improvements happen s-l-o-w-l-y.  Because you are feeling every little 'squirt' every time you move, you hardly notice improvements on a day-to-day basis.
 
The Kegels are a great starting point for training your muscles for new uses.  They have been proven to accelerate the time required for full continence, so keep them up.  What you need to also start doing is forcing yourself to do the Kegel "clamp" every time you rise up from the sitting position.  With time, this will become sub-consciously natural, but for now you need to concentrate on doing the Kegel clamp with any physical exertion.  The exercises by themselves are a good starting point, but now start to apply them to your real-life situations.
 
Next time you are in to see your doctor, ask him when you will be "cleared" for some physical exercise ("core" exercises).  Typically, this will be 6-weeks after surgery.  Come back then and I'll give you some more exercises to accelerate recovery.
 
best wishes...

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7084
   Posted 5/26/2010 4:01 PM (GMT -6)   
Mike,

Welcome. All the above comments are correct, continence takes time, and is not the least bit predictable.

Not considering actual training-type exercise, get plenty of walking in if you can (not to mean it has to be brisk or sweat-drenched, just move as often as you can). That seemed to help me. I started with some Kegels, then a quarter mile walk, pee, do the same thing again in an hour or two. Repeat during the day as your body and the weather permit.

I'm one of those who takes longer with the pads (still a few after 6 months), so I have tried a lot of them.

The pads you probably need right now are the higher absorbency at lowest retail cost - Walgreens Men's Guards, Walgreens Certainty Pads/heavy or ultimate - in the pink packages (both on sale often), or the Tena Heavy pads (expensive side, but wider than the normal female pads). Look for heavy or ultimate absorbency.

I tried some other women's pads, but they are too narrow.
Other Men's Guards (Depends / Tena) are probably too light right now, but you will get there.

Get online and look at the Depends and Tena websites. They will send samples so you can compare, and at least last fall, included coupons. There are also coupons (usually $1 off) printable from their websites.

None are really "soft" - the guards will all have a bit of elastic around the lower edges that will irritate the dickens out of you if it gets crossed up. The unisex pads (Tens, Walgreens, do not have that.

Since I'm one of the 2% club (your doc said 98% do great -), I may be able to offer more help. I would prefer that you go dry up! :-)

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2461
   Posted 5/26/2010 4:07 PM (GMT -6)   
Hi Mike,
I think you are expecting too much too soon. There are very few lucky ones who are continent right after the removal of the catheter. The majority don't get there for months. I was lucky to be dry at night just a week after the catheter was removed but didn't become continent for almost five months. I even have an occasional drip when I'm playing golf. Be patient and let us know how you are progressing.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
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 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 5 months
2 months PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1
11 months PSA test 1/21/10 result 0.004
14 months PSA test 4/19/10 result 0.005


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1211
   Posted 5/26/2010 4:23 PM (GMT -6)   
Hi Mike,

You're so early in your recovery cycle and are expecting a little to much of your seriously disturbed pluming:-).
Give a bit more time (like a few weeks), do your kegels and a lot of walking and you'll be in much better condition in a month or so. Patience is a requirement for this disease. It took me 6 weeks to stop the leaks, but I'm a little older than you.
All the best to you.

Magaboo
Born Sept 1936
PSA 7.9
-ve DRE
Gleason's Score 3+4=7, 2 of 8 positive
Open RP 28 Nov 06 (nerve sparing), Post op staging T3a
Gleasons still 3+4=7
Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; 3 days before Rad Start=0.1
Salvage RT completed (33 sessions - 66 Grays) on the 19th Dec., 08.
PSA in Jan., 09=0.05; July 09=<0.04; JAN 10=<0.04


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 5/26/2010 8:01 PM (GMT -6)   
The road to continence can be a wet and slippery path.

I found for myself, in those first weeks, I would grab hold of Willie when I was getting up and literally pinch him off. As you kegal, and as you train your muscles, you will get better at pinching it off with your pelvic floor muscles.

Because I was a slow learner, I actually used a Cunningham clamp which can squeeze Willie for several hours at a time. I had to do it for working. They are not as bad as they sound.

Some of the pad usage is always how you lay then in your briefs. Use tight briefs so the pad satys in one place. I found using two pads gave me better success at catching whihever way Willie was laying, I went to Walmart and bought the cheapest high absorbant pads they had.

It took me 8 months, but I am 99.9 % dry. Still can get a squirt or a drip here and there, but generally my briefs are adequate to catch it.

Good luck. It is frustrating. Be sure and wear dark pants, so if you do leak, it doesn'tshow too bad.
Goodlife
 
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 .
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)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01


Timm
Regular Member


Date Joined Feb 2010
Total Posts : 83
   Posted 5/27/2010 1:57 AM (GMT -6)   
Hey Mike
 
I'm four weeks out, post cath. cant" add much, except your blatter seems to hold more, after a period of weeks not days. I still cant" drink a 16oz bottle of water and go for a walk, without it all going in the pad, but it is getting better.
 
                                                                                                                        Hang in there, good luck   Tim

58 yrs.
PSA 6.94  12/10
Bio. 8 of 12 cores pos. 2/1
Gleason   3+4=7
Da Vinci    4/14
Tumor volume  9%
Extraprostatic extension- within margins
Margins    clear
T2c NO Mx


cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 5/27/2010 10:26 AM (GMT -6)   
Mike,

I'm unfortunately one of the "veteran" leakers around here. At 7 months I still can't play golf or do anything strenuous without losing it all in the pad. However, my condition was exactly like yours in the beginning and now I'm dry at night and only use a couple of pads a day if I'm not exercising. The good news for you is that I'm at the low end of the bell recovery curve and your chances are excellent to get to be pad free in the 3-6 month range. Most studies say 90% of us are pad free at one year. Patience, there's not a lot you can do right now. I found using a Depends pull-up coupled with a pad gave me a feeling of security out in "polite" society and that combo will absorb a lot of piss. I've been wade fishing a lot lately for redfish and snook on the flats. Hey, it's great! I can pee my pants all I want, nobody knows! smilewinkgrin

Hang in,

Steve

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3742
   Posted 5/27/2010 10:29 AM (GMT -6)   
Mike,
I'm way at the leaky end of the curve. I'm at 10 months and leak 170 ml (3 pads) per day. That is a lot. 2%? Maybe I can join Mensa Incontinence.

The guys have given you great info. But I have one thing to add:
Take data. Keep track of your pad usage or your leak rate so you can see if you are improving. It really helps. (Physically and mentally)
Hopefully you will stop taking data in a few weeks - and become ineligible for Mensa Incontinence. ;-)
Jeff (the leaking one)
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out protatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 3+4=7, 3+3=6. Bone and C/T scans neg.
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.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next See Uro 1/22/10 Trimix #1. Try 0.08- 25%, 0.12-25%, 2/26/10 try 0.16 First Success! 90%.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day. Try controlling fluids.
12/11/09 5 months: 3 pads per day, 400-450ml/day
02/26/10 7 months: 3 pads but leak is now 320 ml (5 day avg.)
03/22/10 8 months: 3 pads per day, 280 ml/day (5 day avg.) PT says all muscles are tight and working properly. There must be another issue. Uro mtg 4/23.
5/22/10 10 months: 2 pads per day, 190 ml/day Scope on June 12.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04, 1/14 6 months - 0.05, 4/14 9 months - 0.04 and <0.01 with ECLIA.


weston
New Member


Date Joined May 2010
Total Posts : 15
   Posted 5/27/2010 12:28 PM (GMT -6)   
Thanks for all the input.  My wife tells me I am not a patient man;  I guess in this case, I have no choice!
 
Mike, Weston, Florida
Dec, 2008: PSA 2.0
Feb, 2010: PSA 2.7 / Lump on prostate
March 2010: Biopsy / Gleason 4+3; 40% one side
April, 2010: Bone scan clear
May 14, 2010: DaVici Prostatectomy (age 63)
Pathology:
-Scattered small foci of prostatic adenocarcinoma Gleason 4+3 (right lobe)
-proportion of P gland invloved by tumor = 3%
- seven benign lymph nodes
- P size: 4.6X3.7X3.3 / 40.5 grams
- pTNM Stage: PT2a / regional lympth nodes PN0
               
May 24, 2010: Catheter removed!! ED and continence journey started!
 


pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 5/27/2010 4:43 PM (GMT -6)   
Hi Mike,
Like you I had virtually no control after the catheter was removed. I kept a container by the bed to catch what I couldn't hold when I had to get up at night. By the time I made it to the bathroom I was pretty much finished.

I did my kegals but I didn't change my intake of liquids. I used 10 or more super absorbent pads per day for several months, and then switched to the Afex Incontinence System. I used the Afex until I only needed to empty the bag once a day, then I switched back to pads.

15 months after surgery I became completely pad free.

I hope to hear of your success in the near future.

Bob
Age 70, 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
Six PSA tests undetectable, latest April 30
Pad free beginning Mar. 18, 2010!

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