Getting the hang of this continence thing

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j53
Regular Member


Date Joined Aug 2010
Total Posts : 45
   Posted 9/8/2010 12:41 PM (GMT -6)   
Well, the big day today, I went back to the surgeon, 10 days post-op, and got the urinary catheter removed.  First feeling was "great, it's finally out!"  Then I dribbled all over the examining room floor and felt nowhere near as good.
 
So I've been home for a few hours, and really have no idea how to master this continence trick.  I know about the kegel muscle and I've been working that, but I can't imagine how to keep it clenched 24 hours a day.  My doc said that 10% of his patients are continent from the first day, and the rest can take days, weeks or months to get to that point.
 
Right now I'm setting my timer for 60 minutes and going to the bathroom, because if I wait longer, things start to dribble.
 
There must be LOTS of people on this forum with experience in getting to full continence.  Any suggestions would be appreciated -- the more explicit the better!!!  Thanks.
 
            Jeff

Age 57, PSA 6.0, Biopsy - 3/12 cores , Gleason 3+4
Aug 27 2010: open RRP at UPMC Shadyside Pittsburgh, nerves spared
lab results: 0/23 lymph nodes involved, negative margins, woo hoo!

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3734
   Posted 9/8/2010 1:34 PM (GMT -6)   
Welcome to HW. Another Jeff! I wonder if the name is a factor in PCa.

Don't go by my experience. I am at 14 months and still leak about 100 ml per day.
2/3 of men are continent at 3 months. Of the remaining 1/3, 2/3 of those are continent at one year. I am in the lucky 1/9 group still wearing pee pads, helping the CEO of Kimberly Clarke keep his yacht full of fuel.

Jeff (the leaking one)
57, PSA 23, DaVinci 7/21/09, Gleason 3+4 7/12 biopsy

SHU93
Regular Member


Date Joined Aug 2008
Total Posts : 328
   Posted 9/8/2010 2:17 PM (GMT -6)   
It takes time for your body to heal. My advice is to be patient and try not to get frustrated. I know for my it frustrated me in the beginning where I would walk down the block and wouldnt realize I was going nonstop as I walked. It got aggravating but as others told me here here in the fourm as I tell u. IT Gets Better as days go by!!!!
 
LIVESTRONG!!!

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 9/8/2010 2:17 PM (GMT -6)   

Hey Jeff!

Great results, based on the info in your signature!  Whoo-Hoo!  The incontinence is likely to be a short-term issue for you, and you are correct that Kegels should help to speed your recovery.  The bad news is that this "relatively" short period of recovery will feel like it goes s-l-o-w.  That's because you are feeling every little drip, drip, drip, or squirt, drip, squirt.  You might be making a tiny little bit of day-by-day recovery, but it often won't feel like it because it will be spread out over (as "Worried Guy" Jeff indicated) it will probably take about 3 months, or 4, or maybe 5 to be "completely" dry.  That spreads out to be just a tiny bit of improvement per day...that's why it seems to go s--l--o--w.

Did your doc give you a Kegel exercise routine to follow?  If not, we can post one here for you.  There's a zillion different variations on a common theme of doing them several times per day, with various pattern.

I personally found that after my belly recovered from the incisions, adding some "core" exercises into my routine -- coupled with Kegels -- probably helped accelerate my continence recovery.  You had "open" surgery, so this won't be until probably 10-weeks or so down the road for you, but something to keep in mind...especially if you were doing any type of physical exercise before your surgery.

Again, great to hear of your outcomes...with your age, relatively low PSA, and other stats, coupled with neg margins, etc., you are very likely to have an excellent and complete recovery, and never have to deal with this cancer again.  That's what you were shooting for!  Whoo-hoo!


daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 9/8/2010 2:32 PM (GMT -6)   
Recovery is all over the map,

For me it was gradual leading up to almost 100% dry with at most a drop or two at a time once in a while.

Thursday I moved 45 bales of hay without leaking a drop, a week after my surgery I couldn't get out of a chair without squirting.

I did the exercises when I thought about it, maybe 3x/day as many as I could comfortably without overdoing it and tiring the muscles.

Best of luck in your recovery and may all your tests be <0.0X
Diagnosed 12-09 age 55
07-06 PSA 2.5
01-08 PSA 5.5 (PCP did not tell me of increase or schedule follow-up!!!!)
09-09 PSA 6.5 Sent for consult with Urologist
11-09 Consult, scheduled for biopsy, found out about PSA from '08 (yes I was pissed)
12-09 Biopsy, initial Gleason 9 (4+5) later reduced to 8 with tertiary 5, ain't much but I'll take it.
01-10 Bone Scan, "appears negative"
03-01-10 RRP in Durango CO by Dr Sejal Quale and Dr Shandra Wilson, no naked eye evidence of spread, Vesicles and lymph nodes taken for microscopic exam.

03-16-10 Removal of cath' and pathology results of samples.
Multifocal carcinoma with areas of Gleason pattern 3, 4 and 5, Overall Gleason grade 4+4 with tertiary 5, Bilateral involving 21% of left lobe, 3% of right lobe, Invasion of left Seminal vesicle, Tumor focally present at left resection margin, 9 lymph nodes removed all negative, Tumor staging pT3b NO MX

04-23-10 PSA <0.04....... 06-07-10 PSA <0.04..... 08-03-10 <0.04
05-03-10 1 week without pads
06-28-10 ;-)

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 9/8/2010 4:10 PM (GMT -6)   
Glad you got rid of the catheter. Remember, you've still got lots of sweling and irritaion inside, and it will take a while for things to subside and start healing. It may take you a few weeks to really know just what degree of incontinence, if any, you have to work on. For now, let things settle, continue the kegals and your current routine. Good luck
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, Path: pT2c, 110 gms., margins clear GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09- Uh-Oh, reoccurance?
ED continues: Bimix- .3ml or Trimix- .15ml

Post Edited (James C.) : 9/8/2010 3:15:17 PM (GMT-6)


j53
Regular Member


Date Joined Aug 2010
Total Posts : 45
   Posted 9/8/2010 4:23 PM (GMT -6)   
Thanks everyone for the advice and support!  It's good to know that other people have had the squirting, dripping, etc., but have eventually overcome it.
 
I'm still curious about exactly HOW one gets continent, especially with a full bladder.  (I can't imagine how you guys can drink a beer and not end up with wet shoes!).  Is it a matter of clamping down the kegel muscle consciously, or does it just sort of  happen at an unconscious level?
 
         Jeff
Age 57, PSA 6.0, Biopsy - 3/12 cores , Gleason 3+4
Aug 27 2010: open RRP at UPMC Shadyside Pittsburgh, nerves spared
lab results: 0/23 lymph nodes involved, negative margins, woo hoo!

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 9/8/2010 4:27 PM (GMT -6)   
Jeff, with me it was on an instinctive level. It took my brain a few days to figure out the new plumbing and to check out the wiring to it, after that, it became a sub-conscious effort, just like we have been since our potty training days. When I take time to really feel what it is like, I can tell there's a difference in what is gripping but I have to focus on it to feel it. The continent part is/will become just as before, if it is gonna return. So, now you gotta live like a 2 year old for a while.... devil smilewinkgrin

fertree
Regular Member


Date Joined Jun 2010
Total Posts : 118
   Posted 9/8/2010 5:44 PM (GMT -6)   
Hi Jeff,
There's no great magic trick to this. So your doc told you 10% are continent the first day. Unfortunately, in your house 100% were not. Mine too, by the way. From posts I've seen, the average time to feeling better about yourself is about 3 months. Your body has undergone a trauma. There's absolutely nothing you can do to change that, but be patient. There's no silver bullet, just wait it out. The fact that you're in your 50's seems to help as well. Good luck

daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 9/9/2010 9:57 AM (GMT -6)   
j53 said...
Thanks everyone for the advice and support! It's good to know that other people have had the squirting, dripping, etc., but have eventually overcome it.


I'm still curious about exactly HOW one gets continent, especially with a full bladder. (I can't imagine how you guys can drink a beer and not end up with wet shoes!). Is it a matter of clamping down the kegel muscle consciously, or does it just sort of happen at an unconscious level?



Jeff


Jeff,
At least for me it's completely sub-conscious, the only time I think about it is when I feel a drip and realize that I "forgot" about it for a minute, even when full preventing a flow requires no thought. Oddly enough the time I'm most likely to let a squirt out is when my bladder has content but not to the level of being noticeable. Just as an example I drink 3 LARGE cups (20oz mugs) of half-caf in the mornings but never leak, but will after working around the property in the afternoons when I re-hydrate with a Fresca, go figure.

Best of luck on your path
Dave in Durango CO

rhb47
Regular Member


Date Joined Mar 2010
Total Posts : 208
   Posted 9/9/2010 1:03 PM (GMT -6)   
Hi Jeff,

My husband-Geoff also, spelled different-had surgery Aug 9th and his cath out 1 week later. He also dribbled all over the exam room floor and filled up a Depends that afternoon. He couldn't seem to figure it out either but he was totally dry that night(though he did get up a lot). The next 3-4 days he used thick pads in the day but was totally dry at night. For 2-3 more days he was dry night and morning-just a little dribble in the afternoon. By the end of the first week after the cath came out he was totally dry. He did wear very thin pads for another week or so just in case, but figured that he should stop wearing them as it was just a crutch by that time.

I know I didn't really answer your question, but it will show you that everyone has a different experience-good luck!

Renee
Husband diagnosed 3/10
Age 56, PSA 4.7, free 7.6%

Biopsy 5 of 10 cores positve-all right side-25% to 57%
Gleason 6
DaVinci surgery with Dr. Vip Patel scheduled 8/9/10

Post Op: Gleason 3+4=7
Negative surgical margins and lymph nodes
No seminal vesicle and angiolymphaic invasion
perineural invasion present
Both nerve bundles spared

An38
Veteran Member


Date Joined Mar 2010
Total Posts : 1149
   Posted 9/9/2010 9:48 PM (GMT -6)   
In regards to how you get continent - it seems that prior to a RP men have three mechanisms to keep their urine in the bladder, two of which are within the prostate. Women have only the one.

Once the prostate is removed there is only one mechanism left - but women have had many more years experience in using it. The men who were using it as the primary method of control are lucky because when that catheter is removed their muscles already know how to hold it in. For mostly everyone else its a learning proces through the Kegels. Some people do have ongoing problems because of damage to the sphincter or inability for the muscles to be trained.

This is what I understood, please correct me if I am wrong.

An
Husband's age: 52. Sydney Australia.
Family history: Mat. grandfather died of PC at 72. Mat. uncle died of PC at 60. He has hereditary PC.
PSA: Aug07 - 2.5|Feb08 - 1.7|Oct09 - 3.67 (free PSA 27%)|Feb10 - 4.03 (free PSA 31%) |Jun10 - 2.69. DRE normal.
Biopsy 28Apr10: negative for a diagnosis of PC however 3 focal ASAPs “atypical, suspicious but not diagnostic” for PC. Review of biopsy by experienced pathologist, 1/12 core: 10% 3+3 (left transitional), 1/12 core: ASAP (left apex)

Nerve sparing RP, 20Aug10 with Dr Stricker. Post-op path: 3+4. Neg margins, seminal vesicles, extraprostatic extension. Multifocal, with involvement in the peripheral, apex, fibro-muscular and transitional zones.

ivyagogo
Regular Member


Date Joined Jul 2010
Total Posts : 21
   Posted 9/10/2010 7:24 AM (GMT -6)   
I found this site that explains how the bladder works. It might be of some help. My husband is 3 months out and is now comfortably leak free.

http://www.netdoctor.co.uk/womenshealth/sui/bladder_005149.htm


**edit - okay, this is a woman's bladder, but I think the basics are still the same

j53
Regular Member


Date Joined Aug 2010
Total Posts : 45
   Posted 9/10/2010 8:38 AM (GMT -6)   
Thanks An, that's very interesting!  I found a summary of urethral sphincter muscles in a short Wikipedia article, and it confirms what you say, that everyone has a voluntary external sphincter muscle, but only men have an internal urinary sphincter muscle.  Unless they've had a prostatectomy, in which case they lose it and are essentially have the same sphincter equipment as women.
 
By the way, this conflicts with the article that ivyagogo mentions, which says that women do indeed have an internal urinary sphincter.  So much for researching on the internet :)  Anyone who can resolve this difference, please do so!
 
Anyway, this is great information.  Now I'll just consider myself to be roughly equivalent to a 2 year old girl in terms of urinary continence.  Girls learn how to do it, so we can too!
 
           Jeff

Age 57, PSA 6.0, Biopsy - 3/12 cores , Gleason 3+4
Aug 27 2010: open RRP at UPMC Shadyside Pittsburgh, nerves spared
lab results: 0/23 lymph nodes involved, negative margins, woo hoo!
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