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Medical Forum / Diseases and Disorders / Prostate Cancer / December 2004

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"Continence" post RRP means . . . what?

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I.P. Freely - 30 Nov 2004 03:24 GMT
Many of you say that with patience, time, and Kegels you achieved
continence, or dry shorts, sooner or later. Does that imply you simply
learned to perform the Kegel isometric every moment you're standing, either
consciously or subconsciously, or that some other mechanism took over so
you're about like you were 30 years ago . . . no effort required to stay
dry? The latter implies to me that sooner or later your original sphincter
"woke up", stepped up to the plate, and became strong enough to stem the
flow without your conscious involvement. Is that the case . . . I hope I
hope I hope?

I.P.
Tee Doubleyou - 30 Nov 2004 04:24 GMT
In my case it means that I am 100% continent.
I had surgery exactly one year ago and had a few minor "incidents"
during following weeks - not months.Maybe I was simply lucky.Maybe
Kegel exercices which I was doing over and over BEFORE surgery helped.
I dont know. But  now I have no problems whatsever in this department.
Tee

>Many of you say that with patience, time, and Kegels you achieved
>continence, or dry shorts, sooner or later. Does that imply you simply
[quoted text clipped - 7 lines]
>
>I.P.

--
Verba volant, scripta manent.
ButtercupsDad@dog.net - 30 Nov 2004 12:41 GMT
Hello IP:
  My RRP was 8-1-2003 and I am one of the unlucky ones that still has
to wear pads, 1-2 per day depending upon activity level.  For seven
months I was going through 4-5 pads per day, and I was filling them
up.  From what I know it is the luck of the draw whether you are one
of the lucky ones that return to full control, whether, for some,
immediately after the catheter is removed, or within three months or
so.  When the catheter was removed I had almost no control at all, and
for a couple weeks I was going through 6 pads per day.  For some
reason I have never leaked while laying down though.  Guess we can
thank gravity for that.
  At my last, and final, follow up visit with the uro he told me that
at this point I will not get any better.  No guess as to why.  He did,
however, tell me to try and get into the habit of consciously clamping
down before getting up, stooping, etc., in order to reduce the amount
of leakage.  Over time that will become habit I suppose, and it will
help.  I did not take what he said to be along the lines of exercising
the muscle, but rather shutting off the line before doing something
that usually results in a leak.  
  Not that I am happy about the incontinence, minor as it is, or the
impotence, but try not to get too bummed out about leaking.  Through
my experience I have learned that lots of women over 50 have the same
problem and manage to live with it and still be happy.   BTW, after
returning to work I got out of the habit of doing the Kegel exercises,
and as I said above, I managed to get better anyway.  But, to err on
the side of safety, I would do them if I were you.
  Final note, the doc gave me prescriptions for Ditropan, Oxy
something patch, etc.  None of that helped the incontinence.
  Good luck.
  Thank you.
David S.

>Many of you say that with patience, time, and Kegels you achieved
>continence, or dry shorts, sooner or later. Does that imply you simply
[quoted text clipped - 7 lines]
>
>I.P.
Claude - 30 Nov 2004 14:46 GMT
> Many of you say that with patience, time, and Kegels you achieved
> continence, or dry shorts, sooner or later. Does that imply you simply
[quoted text clipped - 7 lines]
>
> I.P.

   I had my RRP on 5/1/02 at age 64.  I could control urine to some extent
from the time I got home.  When I stood up or moved, I consciously used the
"Kegel muscles" to hold it.  Within 48 hours I was basically continent and
stopped thinking about "holding" the urine flow.  My lower sphincter seemed
to take over automatically.  I had 2 accidents in the first year.  One when
I had a second martini and the second at night when I was dreaming of
urinating (and acted out my dream).  Since then, no accidents.
   I do find I have to think about bathrooms just as much as before when I
suffered from BPH for a number of years, and I seem to pee just as often.  I
usually get up at least twice during the night.  When I have to go, I have
to go.  I don't mess around.  The pressure to release is at a lower spot in
my plumbing, and I have the sense it's trying to get out, and if I wait too
long I will wet my pants.  In other words, I don't seem to have the control
*with a full bladder* that I used to have.
   Now, why have I had such a good result?  Skill of the surgeon?
Certainly.  But also, I have been thin in my latter years and have walked
for an hour a day for most of those years.  I think that keeps the lower
musculature toned (unscientific, I know, but that's my opinion), which
affects the sphincter (or whatever it is that holds the urine).  In
addition, since I have had BPH for so many years, I have had great practice
in holding urine when I had to go---this might have been me doing the Kegels
without even knowing it.  And, of course, it may be a lot of luck.  Who
knows?  Anyway, that's my continence story, and I'm grateful.
Steve Kramer - 30 Nov 2004 14:56 GMT
I did mine whenever I thought of them, which was not as often as the doc
wanted.  It took me months, probably due to that fact.

Signature

Prostate Cancer Survivor (so far), not a doctor
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3bN0M0
PSA  .1  .1  .1  .27  .37  .75
EBRT 05-07/2002 @ 47
PSA  .34 .22 .15 .21 .32
Lupron (1 mo) 07/21/2003 @ 48
PSA  .07 .05 .06
Lupron (3 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50)
non Illegitimi carborundum

> Many of you say that with patience, time, and Kegels you achieved
> continence, or dry shorts, sooner or later. Does that imply you simply
[quoted text clipped - 7 lines]
>
> I.P.
Dave Perry - 30 Nov 2004 14:58 GMT
Staying dry means doing so without consciously flexing the muscle.
I've had some diffulty getting dry and still wear a pad for stress
drips 16 months post-op but most of the time I'm dry without thinking
or squeezing or doing anything consciously.  My progress came slowly
and it was not linear.  I would have a couple of months of no
progress, perhaps a month of regression followed by an awareness that
I only filled one pad in a day to be followed by a three pad day.
Overall though I'm in pretty good shape now and I could go padless if
I were to just loll around the house doing nothing that would cause a
squirt.  The pad now is used for catching the cough/sneeze/stoop drips
that would otherwise leave a small but socially unacceptable pants
stain.  I do have days where the pad has more perspiration in it than
urine.  Hope to be pad-free eventually but statistics say where I am
at 18 months (this coming January) is where I'll be forever.  We'll
see.
Dave Perry  

> Many of you say that with patience, time, and Kegels you achieved
> continence, or dry shorts, sooner or later. Does that imply you simply
[quoted text clipped - 7 lines]
>
> I.P.
Danny McCarty - 30 Nov 2004 17:08 GMT
>Subject: "Continence" post RRP means . . . what?
>From: "I.P. Freely" fuhgeddaboutit@noway.not
[quoted text clipped - 12 lines]
>
>I.P.
You don't HAVE your "original" sphincter, it was taken out along with your
prostate.  It is essentially part of the prostate and has to be "killed" or
removed.  

SIGNATURE File: Ranking the 20th Century Presidents: 1.Reagan 2.Eisenhower
3.Kennedy 4.Nixon  5.Bush 6.Hoover 7.Truman  8.T.Roosevelt 9.Coolidge 10.Ford
11.Carter 12.McKinley 13.Taft 14.Harding 15.Harrison 16.Clinton 17.Wilson
18.F.Roosevelt 19.Johnson
Claude - 30 Nov 2004 17:41 GMT
> >Subject: "Continence" post RRP means . . . what?
>>From: "I.P. Freely" fuhgeddaboutit@noway.not
[quoted text clipped - 17 lines]
> or
> removed.

But, as I understand it, there is a secondary sphincter lower down that
becomes our primary (and only) one.  If I'm not mistaken, this is basically
the only sphincter women have.
I.P. Freely - 30 Nov 2004 18:24 GMT
Danny's right, according to Walsh. We've lost the control the prostate used
to provide, but still have a sphincter below the prostate for involuntary
control plus the Kegel muscles for voluntary reinforcement. My question is
how well these two can do the job without our conscious effort, if
everything goes well.

From my status so far, some of us may benefit from carrying a little stool
or monopod seat around with us, 'cause if I'm sitting I'm dry. " 'Scuse me,
miss, but I've got to sit to keep my diaper dry. Now, then . . . what did
you say your sign is?" Without that I find myself scooting around a room
plopping my rear end on every piece of furniture in sight, like a puppy on a
rug, to keep the cat between my thighs a little drier a little longer.

I AIN'T looking forward to a multiple-flight, cross-country trip soon,
especially considering the new search procedures. No, you
burger-flipper-dropout . . . that is NOT C-4 in my pants. Here, take a
whiff, you moron . . . THAT'LL convince you. ;-)

Oh, the possibilities. If I'm gonna suffer, so is anyone who gives me any
grief about it. It's like my Tee shirt that proclaims, "If you don't like my
attitude, STOP TALKING TO ME" -- and I bought that before I knew I have the
Big C . . . squared.

I.P.

>> You don't HAVE your "original" sphincter, it was taken out along with
>> your
>> prostate.  It is essentially part of the prostate and has to be "killed"
>> or
>> removed.

and Danny responded
> But, as I understand it, there is a secondary sphincter lower down that
> becomes our primary (and only) one.  If I'm not mistaken, this is
> basically the only sphincter women have.
I.P. Freely - 30 Nov 2004 18:40 GMT
Oops . . . CLAUDE'S right, according to Walsh. I got lost in the
<><><<>><<<>><><.
I.P.

> Danny's right, according to Walsh. We've lost the control the prostate
> used to provide, but still have a sphincter below the prostate for
[quoted text clipped - 33 lines]
>> becomes our primary (and only) one.  If I'm not mistaken, this is
>> basically the only sphincter women have.
Danny McCarty - 03 Dec 2004 18:43 GMT
>Subject: Re: "Continence" post RRP means . . . what?
>From: "I.P. Freely" fuhgeddaboutit@noway.not
[quoted text clipped - 42 lines]
>>> becomes our primary (and only) one.  If I'm not mistaken, this is
>>> basically the only sphincter women have.

Yes.  We are both right, I think.  ;-}  I've been trying to puzzle it out in my
copy of Gray's Anatomy.  
Danny McCarty - 03 Dec 2004 19:07 GMT
>Subject: Re: "Continence" post RRP means . . . what?
>From: "I.P. Freely" fuhgeddaboutit@noway.not
>Date: 11/30/2004 12:24 PM Central Standard Time
>Message-id: <3%2rd.8591$M06.933@fe06.lga>

? ;-} Wrong order, there.  Claude mentioned the secondary sphincter, I referred
to the primary sphincter.  The female uretha exits the bladder in front and
proceeds out directly under the pubis while the male uretha exits the bladder
from the bottom and then turns toward the front and proceeds under the pubis.
  Involuntary control does come back.  I was alomst completely continent after
about 2.5 years, before chemotherapy.  

>Danny's right, according to Walsh. We've lost the control the prostate used
>to provide, but still have a sphincter below the prostate for involuntary
[quoted text clipped - 31 lines]
>> becomes our primary (and only) one.  If I'm not mistaken, this is
>> basically the only sphincter women have.
ButtercupsDad@dog.net - 01 Dec 2004 13:20 GMT
From what I have read men have three (really two).  The sphincter at
the base of the bladder is removed in the RP (good point Danny).  The
muscular tissue in the prostate that surrounds the urethra acts "like
a sphincter".  Of course that goes in the RP.  Both of these are tied
to the involuntary nervous system, so you do not conciously control
those.  The remaining sphincter, at the base of the pelvis (whatever)
is what we have left, and it is tied to both the voluntary and
involuntary nervous systems.  That means we have a degree of control
there.  Drink beer and go out in the cold and that is the one you are
talking to.  

I am not a doctor of course, and what you read here is regurgitation
from my research prior to the surgery.  But is it worth evey penny
that you paid for it.

Good luck

Thank you.
David S.

>> >Subject: "Continence" post RRP means . . . what?
>>>From: "I.P. Freely" fuhgeddaboutit@noway.not
[quoted text clipped - 21 lines]
>becomes our primary (and only) one.  If I'm not mistaken, this is basically
>the only sphincter women have.
Mike Anzel - 30 Nov 2004 18:03 GMT
I too am just post RRP.  Surgery was on 11/10.  I'm 47 and hope this is
normal recovery as well.  It's almost 3 weeks and I am very dependent on
pads at this time.  I just purchased 3 packs of depends underwear for
nightime use.  I'm having trouble doing kegels.  Find them difficult to do.
I find that walking seems to help.  I do manage to go urinate in the
bathroom several times per day.  My steam was very "spray like"  but now
it's more like a stream.  Just hope that each day gets better .
> Many of you say that with patience, time, and Kegels you achieved
> continence, or dry shorts, sooner or later. Does that imply you simply
[quoted text clipped - 7 lines]
>
> I.P.
I.P. Freely - 30 Nov 2004 18:37 GMT
I'm getting better rapidly in terms of diapers per day, but much of the
improvement is from changes of habit, not physiology. I Kegel as I arise
from a chair or bed, go straight to the bathroom every time, void to take
the pressure off the system, try to Kegel as long as I'm standing or
walking, sit as often and as long as possible, and avoid unnecessary
standing/walking. I could go jogging if it was worth soaked diapers, but
it's not, so I don't. No one has yet told me whether walking helps
continence/control, I feel fine otherwise, and I'll hit the Bowflex again
when I reach the magic 6 weeks post-op, so I see no need to walk for the
sake of walking.

Am I missing something?

I.P.

>I too am just post RRP.  Surgery was on 11/10.  I'm 47 and hope this is
>normal recovery as well.  It's almost 3 weeks and I am very dependent on
[quoted text clipped - 3 lines]
>bathroom several times per day.  My steam was very "spray like"  but now
>it's more like a stream.  Just hope that each day gets better .
Dave Perry - 30 Nov 2004 22:39 GMT
Some people swear that walking helped their continence.  These may be
the same people who swear by Kegels.  All I know is that I leaked most
when walking during the first few months and even now I find that when
I do have non-stress leakage it is mostly when walking.  I don't jog
and have no desire to start.  I do bicycle occasionally and don't leak
while sitting on the seat but do leak getting on and off.  I did take
a vacation to Italy, direct flight from San Francisco to Frankfurt and
another on to Rome last September, 2003, about 2 months post-op.  At
the time my only progress in the continence department was that I was
able to hold it more or less while walking from a chair to the
bathroom.  I managed to get an aisle seat that wasn't too far from the
can and I made a whole bunch of trips, about every hour or so whenever
the "unoccupied" light was on.  I couldn't hold it if I had to wait in
line.  I was able to make the entire 15 day trip starting off with
about two packages of Depends pads spread throughout all our luggage.
It was the only time we ever came home with emptier bags than when we
left.  We did discover there are plenty of Depend-like things all over
Italy and I assume everywhere else.  All drugstores and groceries of
any size have them.  Similar blue and white package too.  I still pack
a bunch when I go away though.
Dave Perry

> I'm getting better rapidly in terms of diapers per day, but much of the
> improvement is from changes of habit, not physiology. I Kegel as I arise
[quoted text clipped - 18 lines]
> >bathroom several times per day.  My steam was very "spray like"  but now
> >it's more like a stream.  Just hope that each day gets better .
Sandy K. - 30 Nov 2004 21:54 GMT
> Many of you say that with patience, time, and Kegels you achieved
> continence, or dry shorts, sooner or later. Does that imply you simply
[quoted text clipped - 7 lines]
>
> I.P.

Continence to me means I don't wet myself any longer.   Do I constantly have
to be aware of it??  No, I don't.  I had my RRP in June, 2004 at age 47.  I
never really soaked the pads.  Early on, in hindsight, I found that a lot of
my leakage was the result of the healing I had to go through - most likely
the result of the catheter.  Now, I don't not consiously have to control
myself.  However, I do find that if I force a fart (sorry, no other way to
expalin it) then I may leak - albeit a miniscule amount.  There are times
when I've thought I've leaked and when I checked my underwear, I was dry.
fortunately, I do not leak when I sneeze or cough - especially good since
I'm just getting over bronchitis!!  I did do kegels  - about 40 a day -
aftert he cath came out.  I rarely do them now and the only time I hold it
in, is when I pass gas.  I do try to "hit the head" before leaving the
house, office,etc. So that may help to keep me dry.  I also found that I was
peeing quite frequently - every 2.5 - 3 hours.  However, when I went for my
PSA a few weeks back, I mentioned it to my Uro and he prescribed Sanctura.
So far, I'm finding I can go 5-6 hours without feeling the need to pee.  My
guess is that time will help you.

Sandy K.
I.P. Freely - 30 Nov 2004 23:39 GMT
I got SEVERE, debilitating -- even hospitalization-worthy sometimes --  
bronchitis once or twice a year for 15-20 years, until my 6th or 8th doctor
asked me, "Why don't you stop getting it?" He wasn't kidding; he said, "Buy
a humidifier and it'll cease." I did, and have not had bronchitis once since
that day . . . in about 1985.

We breathe through our noses all night. This dries, then cracks, our mucous
membranes. Bacteria imhabit, then thrive in, the cracks. They often do best
in our sinuses, producing a little clear, watery post-nasal drip, triggering
a little cough as it slides down our throat a few days later. Then it
infects the throat, then grows in coverage and intensity, as its product
turns yellow, then green, then brown as it moves down from our sinuses to
our throats to our bronchial tubes to our lungs, at which point we are
dangerously, horribly ill. Then with antibiotics and months of residual
hacking and recuperation, we feel good again, just in time to get that old,
familiar dry feeling in our throat again.

Now, which sounds simpler . . . that, or a humidifier beside your bed? I've
tried MANY kinds, and prefer the small, one-person, evaporative type, filled
with distilled water to minimize maintenance.

I.P.

> do not leak when I sneeze or cough - especially good since
> I'm just getting over bronchitis!!
JerryW - 01 Dec 2004 00:13 GMT
I.P.

Just to add my $.02 to the many good responses you've received so far. I
believe luck certainly has something to do with the incontinence issue, as
well as the skill of the surgeon, and, perhaps, the roll of the dice in
exactly how close the tumor is to the sphincter that will remain after the
prostate is removed. It seems I was told, or read, that sometimes part of
that one last sphincter may be damaged in the removal of the prostate if the
tumor is close to that margin.

As I've posted here before, I am one of the lucky ones in this regard. My
RRP was May 18th...used about 3-5 pads a day for the first six weeks, or
so...down to 2-3 for the next couple of weeks...and by the middle to end of
August I found myself changing a dry pad once a day. Then I just quit using
the pads altogether. I've been dry since then, if dry includes the
possibility of a drop or two leak once in awhile if I pass gas or sneeze
hard without remembering to clench up first. Otherwise, I don't even think
about it. Whatever sphincter I have left seems to do the job pretty much
involuntarily. I don't think I go to the bathroom any more now than before
the surgery, but I'm a lot more conscious of where the nearest one is and
how much trouble I can avoid by making use of it whenever I can and not
waiting until the pressure is on. When I do need to go, it is more urgent
than it used to be, or as least I imagine it to be so. Also, I didn't pay a
lot of attention to doing the kegel exercises...mostly just starting and
stopping the stream during urination while standing.

At any rate, good luck to you, and I hope your experience will be like mine,
or better.
Signature

JerryW
jweindel at flash dot net

2/11/04 PSA 2.6, Suspicious DRE (age 62)
2/23/04 Biopsy: Gleason 3+4=7, T2a, left lobe
5/18/04 RRP, Path: Gleason 4+3=7, T2c, both lobes
Tumor organ-contained; lymph nodes clear, seminal vesicles clear
Both nerve bundles spared
7/13/04 PSA <0.1
10/12/04 PSA <0.1

> Many of you say that with patience, time, and Kegels you achieved
> continence, or dry shorts, sooner or later. Does that imply you simply
[quoted text clipped - 7 lines]
>
> I.P.
John Baker - 05 Dec 2004 15:08 GMT
Hi::

Can someone tell me what they use as "Pads". I had seeding on the 2nd of November, and
have started to leak recently. It feels as if I need something to contain it!

Best

John Baker

>I.P.
>
[quoted text clipped - 24 lines]
>At any rate, good luck to you, and I hope your experience will be like mine,
>or better.
JerryW - 05 Dec 2004 15:29 GMT
John,

I used "Kroger Guards" incontinent pads for men. They are the store brand
knock-offs of the brand-name "Depends" Guards incontinent pads for men. I'm
sure there are many varieties and sizes of incontinent pads available at
your local drugstore or supermarket or Wal-Mart or Walgreens, etc. They
generally have an adhesive strip on the outside to help keep them in place
inside of jockey briefs, for example. There are various types of incontinent
underwear, as well. Sort of like Huggies Pull-ups for toddlers, only
men-sized.

Some have posted here that they use some type of female pads, menstrual
pads, that are lighter and/or thinner, etc. I didn't try them. If you're not
leaking badly, you may want to explore this option.

Good luck.
Signature

JerryW
jweindel at flash dot net

2/11/04 PSA 2.6, Suspicious DRE (age 62)
2/23/04 Biopsy: Gleason 3+4=7, T2a, left lobe
5/18/04 RRP, Path: Gleason 4+3=7, T2c, both lobes
Tumor organ-contained; lymph nodes clear, seminal vesicles clear
Both nerve bundles spared
7/13/04 PSA <0.1
10/12/04 PSA <0.1

> Hi::
>
[quoted text clipped - 40 lines]
>>mine,
>>or better.
Debbie Trujillo - 05 Dec 2004 16:52 GMT
On 12/5/04 7:08 AM, in article p196r0lg9d81det3pbmb1966ido37mom3m@4ax.com,

> Hi::
>
[quoted text clipped - 15 lines]
>> that one last sphincter may be damaged in the removal of the prostate if the
>> tumor is close to that margin.

If your leaking is light there are Tenas for men.  WalMart carries those.

>> As I've posted here before, I am one of the lucky ones in this regard. My
>> RRP was May 18th...used about 3-5 pads a day for the first six weeks, or
[quoted text clipped - 14 lines]
>> At any rate, good luck to you, and I hope your experience will be like mine,
>> or better.
Steve Kramer - 05 Dec 2004 17:31 GMT
I use Tevas for Men (I think that's what they are called).  But, I need
light pads and only when golfing, moving furniture and parties where I'm
expected to drink a lot of beer and stand up a lot.

Signature

Prostate Cancer Survivor (so far), not a doctor
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3bN0M0
PSA  .1  .1  .1  .27  .37  .75
EBRT 05-07/2002 @ 47
PSA  .34 .22 .15 .21 .32
Lupron (1 mo) 07/21/2003 @ 48
PSA  .07 .05 .06
Lupron (3 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50)
non Illegitimi carborundum

> Hi::
>
[quoted text clipped - 33 lines]
> >At any rate, good luck to you, and I hope your experience will be like mine,
> >or better.
DonC - 05 Dec 2004 19:55 GMT
I have used guards for men -- both the Depends brand and store brands which
are generally made by Kimberly-Clark.  The Depends brand are slightly
narrower (maybe an inch) than the store brands but thicker.  Depends hold
about 10% more liquid than the store brand by my tests  -- 10.6oz vs.
.4oz  -- but I'd never let one get beyond 3 to 5 ounces so I don't think
that's too relevant.   The store brands are wider and thinner so they may be
more comfortable for some.

Good Luck!

> Hi::
>
[quoted text clipped - 6 lines]
>
> >I.P.
 
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