2 Days Post Catheter - Leaking!!! How Hard Should I be Kegling?

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bryanesp
New Member


Date Joined Nov 2010
Total Posts : 5
   Posted 4/8/2011 7:05 AM (GMT -6)   
Guys,

I'm day 9 post op and day 2 post catheter. Pain free, comfortable and feeling completely normal following divinci except for the dreaded leak... The leak is freaking me out, so I'm obsessing over Kegels... What's an intense, but sufficient routine you would recommend? 10 mins a day? 10 mins 2x day? 10 mins an hour? I'll do WHATEVER it takes :-)

BTW, was fit prior to surgery... 2x / week at gym, walking miles each week and not overweight.

Thanks!

-bespy
Age 50
Nov 2010 = Odd Bladder/Prostate Symptom - Blood in Urine,
Dec 2010 = Cytoscopy Rules out Bladder... Blood appears benign from cyst
Dec 2010 = PSA 2.5 *Note: My Dad dead at 59 from PCA, so PSA is alarming
Jan 2011 = MRI at Duke - Small Suspicious Lesions in Prostate
Feb 2011 = 12 Core Biopsy, 3 Postive GS (3+3)=6
Apr 2011 = Select Dr. Daniel Watson - Charlotte Private Practice - Divinci

Post Edited (bryanesp) : 4/8/2011 6:23:35 AM (GMT-6)


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 4/8/2011 7:15 AM (GMT -6)   
Bryan, congratulations on being "on the other side" and am glad to hear that you're comfortable and feeling normal. You are still very early in your recovery and it's difficult to predict how long the leaking will last. As with any exercise, overdoing Kegels can do more harm than good. From what I understand, how you do them is at least - if not more - important than how often. Walking helps tremendously with the leaking and urgency (according to my husband). Now that the catheter is out, get outside if you can and walk.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 thru July 2009. August 2009 - 0.1, September 0.3, October back down to 0.0. Last PSA March 2011: undetectable!

Viperguy
Regular Member


Date Joined Nov 2010
Total Posts : 259
   Posted 4/8/2011 7:48 AM (GMT -6)   
Leaking has freaked me out too. I am one month post surgery and still leaking but it is not as bad as several weeks ago. I probably don't Kegel enough. I begin leaking during the first moment my bladder starts filling up. Therefore when I go pay the water bill there is not much there to start and stop the urine stream. How can you stop a 5 second pee stream? You really can't. Therefore my Kegels are performed while seated watching TV. I purchased the Afex pee control system and really like it when I'm away from the house. If you get the Afex, do not simply pee just because you are wearing it. You should still hold back and go the normal way. This will strengthen Jr's. muscles for pee control.
57 years old
2009 PSA 2.2
2010 PSA 3.2
Biopsy 24 cores 3 positive
Gleason 3 plus 3
Robotic Surgery March 3, 2011 @ 6 am
Cath removal 3/17/11
Still Leaking like a Japanese Reactor 04/05/11
Horrible ED
Not at all happy with side effects

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 4/8/2011 7:52 AM (GMT -6)   
Hey don't worry, when you were a baby you "leaked" or maybe just didn't know any better? Just accept it and concentrate on recovery. It's not that big a deal, just a PIA. "THey" say you can over do kegles and fatigue your sphincter so your plan sounds good. Also walking is good for plevic floor muscles and Sephie's sujestion is a good one. Almost everybody leaks at first so you are not doing badly, just normal for post RP. Anyway, glad to hear you are feeling good. Post in 2 weeks and give a progress report.
Ron
06-08 1st biopsy neg psa 4
10-09 psa 5.5 2nd biopsy 1/12 pos. 10%, G(4+3) age 65
12-15-09 RRP Tulane NOLA Dr Lee
Path, 1%, clr marg, no EPE, no SVI, nodes cl, G(4+3)
100% incontinent @ 12 months
ED, pre-op severe, post op total
10/10 Dr Boone, Methodist recomended AUS
AUS/ IPP performed 1/11/11 Methodist Houston
post op psa's 0.04,<0.1,<0.1,<0.01@12 mo.

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 4/8/2011 7:53 AM (GMT -6)   
Bryan:

I am sorry you are leaking - and doubly sorry, it appears, that your doctor did not give you instructions and rationale for kegels -
-my doctor told me to do - 20 reps - 5 times a day ( so 100 in total a day)
-they were standing pelvic thrusts - like the "timewarp dance" in rocky horror picture show movie/musical.

-you can overdo it and weaken the muscles - so connect with your doctor ( he saw what you have to work with) and get his advice.

-do keep in mind that your body is healing and with some it can be overnight, others a longer time period ( my turnaround date was 16 weeks after surgery), and some even longer and may need surgical assistance.
-don't be too tough on yourself -

-obey you doctor's rules - no lifting over 10# (the weight of a laptop) for 6 weeks- drink lots of water - flush all the stuff out of your system - gear up for walks - a little longer each day - and no inclines - you want your re-assigned internal bits to stay in place...

-recovery takes time - learn to listen to your body again - and remember, all bodies and men are different... just go with the flow...

hugs,
BRONSON
Age:55 -gay with spouse of 14 years, Steve -Peterborough, Ontario, Canada
PSA:10/06/09 3.86
Biopsy:10/16/09- 6 of 12 cancerous samples, Gleason 7 (4+3)
Radical Prostatectomy:11/18/09
Pathology:pT3a -Gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
PSA:04/08/10 -0.05 -Zero Club
PSA:09/23/10 -0.05 -Zero Club
PSA:03/24/11 -0.02 -Zero Club
PSA:03/24/12- TBA

Pumper24
Regular Member


Date Joined Feb 2011
Total Posts : 24
   Posted 4/8/2011 8:08 AM (GMT -6)   
I had my surgery on Dec. 27 also leaked like a crazy.  Just roll with it.  Walking also a big help. At about 2 months slowed down a lot and now I wear a pad but I really don't need it. I'll be wearing my big boy pants all the time in about a week.  I know I was sick of people telling me relax it's early but they're right. It takes time.

wifeandmother
Regular Member


Date Joined Feb 2011
Total Posts : 45
   Posted 4/8/2011 1:25 PM (GMT -6)   
My husband is having robotic prostatectomy in a few weeks.  He has been doing about 300 kegels a day.
I get the feeling from when the catheter comes out, it can only get better...I mean, yeah, you are leaking for a while, but the leaking will get better over time.  I am very positive.

Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 4/8/2011 2:17 PM (GMT -6)   
Don't obsess. I leaked badly - needing up to 10 heavy-duty pads dailly - for some months afterwards. I still leak and use one light pad a day. No harm in doing kegels at this point. But, my surgeon/urologist has told me there's no strong evidence that kegels do any good, anyway. Each of our bodies is different. You're still too early in the post-op period to worry. Take it one day at a time. Best wishes for a complete, and successful recovery and life after.
Age: 61 (58 at diagnosis - June, 2008)
April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior
June '08 had biopsy, 2 days later told results positive but in less than 1% of sample (Gleason's 3+3=6)
Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days
Dr. recommended robotic removal using da Vinci; Surgery 9/10/08
Northwestern Memorial Hospital, Chicago, IL; Dr. Robert Nadler, Urologist/Surgeon
Post-Op Gleason's: 3+3, Tertiary 4; Margins: Free ; Bladder & Urethral: Free
Seminal vesicles: Not involved; Lymphatic/Vascular Invasion: Not involved
Tumor: T2c; location: Bilateral; Volume: 20%; Catheter: Removed 12-days after surgery
Incontinent: Yes (1 to 2 light (woman's style) pad per day)
ED: Combination of Cialis and MUSE (alprostadil) once weekly: started 9-27-08
Returned to work 9-29-08 (18-19 days post-op)
PSA test result, post-op, 10/08: 0.0; 12/08: 0.0; 4/09: 0.0; 9/09: 0.0; 3/10: 0.0; 9/10: 0.0

Ausboy
Regular Member


Date Joined Mar 2011
Total Posts : 92
   Posted 4/8/2011 3:10 PM (GMT -6)   
Hi Brian
The dreaded leak also freaks me out as well, I'm 4 weeks post op and down to 1or 2 pads a day depending on how active.
it is important to do Kegels, and properly, were you shown by the doc or a nurse continence practitioner? I was told 3 sets of 8 (count and hold for count of 10 or 6secs) 1 minute break between sets. do in different positions standing sitting walking etc. Also ok/good to do quick squeezes. If looking in a mirror you should see penis/testes rise while your holding on. Some people are ok not doing them but it will speed up the muscle tone. Hope this helps.

post op - we now have only one sphincter to control urine flow, like women, it's in the pelvic floor and needs to be strengthened. the one above prostate is damaged or removed with it, so you have to use the one below where prostate was, most men rely one top one so went it goes it takes a while till other muscles etc. kick in, worst part is, they say like women post pregnancy we have to continue to do exercises to maintain strong pelvic floor or we will leak, aaargh!
I never had a problem prior to surgery could go all night without a pee, now I wake up twice to go? 1st week post cath was worst, take it easy rest up, things are healing.
I have a printout from nurse which gives a good daily routine if you would like?
age 49, dx 21-01-2011 PSA 5.6
12 cores all positive >80% in some, Gleason 3+3=6, T2B
RALP 10-03-2011, post OP pathology, Gleason 3+4=7 and 1% 5+4=9
Prostate 50g, 48mmx40mmx40mm, largest tumor 48mmx34mmx24mm, extensive PIN also present, EPE left apex .2mm, perineural invasion, clear margins closest was .7mm, lymph nodes not checked.
path stage pT3A Nx Mx R0
post OP PSA ? 11/5/2011

fertree
Regular Member


Date Joined Jun 2010
Total Posts : 118
   Posted 4/8/2011 5:19 PM (GMT -6)   
I'll do WHATEVER it takes :-)

Will you really do whatever it takes? Because what it takes in an incredible amount of patience.
PSA 2.1 on Avodart
Biopsy: 1 of 12 cores positive >5%, Gleason 8
open RP: 05/10/2010 Dr. Gary Steinhoff, Victoria BC
Pathology: pT2c Gleason 3 (80%) 4(20%)=7, no lymph invasion, no extraprostatic extension, negative margins, tumor 5% of tissue.
Nerve bundles removed (based on original Gleason 8 biopsy)
PSA 06/22/10 >.01 09/22/10 >.01 01/06/11 >.01 04/04/11 >.01

bryanesp
New Member


Date Joined Nov 2010
Total Posts : 5
   Posted 4/9/2011 7:17 AM (GMT -6)   
OK, OK... I get it. Chill, do my kegels, walk like a mofo and give it time :-) I can do that!

Not a single doctor (and I interviewed 6, from places like Duke, UNC, Vanderbilt and 3 private practices) made a point of telling me that leaking could be significant.. they all glossed over it and almost every single one said things like "you'll see some leakage when your stressed.. you know, like when you cough, sneeze and get up from a sitting position".

No one said I might be gushing non stop for a while... so my worry was less about realities of leaking and the dramatic difference between "some leakage" and heavy, steady leaking I'm seeing early on.

I'm not whining or complaining just a little shell shock and wondering what I can do about it... You've given me what I needed to reset my expectations and physical recovery.

Thanks.
Age 50
Nov 2010 = Odd Bladder/Prostate Symptom - Blood in Urine,
Dec 2010 = Cytoscopy Rules out Bladder... Blood appears benign from cyst
Dec 2010 = PSA 2.5 *Note: My Dad dead at 59 from PCA, so PSA is alarming
Jan 2011 = MRI at Duke - Small Suspicious Lesions in Prostate
Feb 2011 = 12 Core Biopsy, 3 Postive GS (3+3)=6
Apr 2011 = Select Dr. Daniel Watson - Charlotte Private Practice - Divinci

Inspector 13
Regular Member


Date Joined Feb 2011
Total Posts : 181
   Posted 4/9/2011 11:09 AM (GMT -6)   
I can understand your frustration. It just seems like there is no "standard" case of recovery after prostate surgery and you just seem to go down that road with no idea of how much of a problem incontinence will be or how long it will take to get back under control. I didn't make it out of the medical building after catheter removal without a "gush" when I pushed on the door to go outside. There was a learning curve of what kind of motions seemed to make a "gush" more likely and how much force to use on the Kegel contractions to avoid soreness. For a few weeks it seemed like the Kegels had no effect then it seemed like there days that were just a little bit better than others. There was no big leap in improvement, just little upward steps. about six weeks after catheter removal I stopped wearing pads when I was at home and built up enough confidence to stop wearing pads altogether in a few more weeks. The big thing is to keep going with the exercises even if some days seem like a step backwards.

Bluenose
Regular Member


Date Joined May 2008
Total Posts : 260
   Posted 4/9/2011 12:48 PM (GMT -6)   
 
 ..like others said here, give things time. You're early post-op. I did some kegels early pre-op, doing the gym thing too...post-op kegels didn't seem to help one way or the other. I walked a lot outside, flip-flops, gym shorts and a bag for the cath-bag..I didn't care who saw me. I stopped doing the kegels early...my body took it own's route  and 6 months down the road I was pad free. After I worked the courage up to go without. You'll get there my friend. Good luck and give things the time it needs!
 
  age: 53 @ Dx, Pre-op PSA Feb 08' 5.0, April 08' 4.1
  Biopsy 5.1.08, 5 of 15 cores postive, T2a, Gleason 3+4=7
  DaVinci performed 7.29.08
  Bladder sling installed, umbilical hernia repaired during surgery.
  Path report, "cancer fully contained, margins clear".
  Cath removed 8.8.08, ED therapy begins 8.9.08
  100mg Viagra three times a week, pump for ten minutes daily
  and hold for ten minutes.
  8.16.08 switched to Levitra 20mg, immediate results
  9.15.08 Pad free at night, one thin (light) pad during the day
  9.18.08 1st Post-op PSA Undetectable Zero's....Yes!
  12.22.08 2nd Post-op PSA  Zero's still...
  6.23.09 1yr Post-op PSA Still a zero..
  12.23.09...another zero
  Pads gone 1.3.09, finally found the courage...Thanks ya'll
          ".....tryin' to reason with hurricane season...."
       
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