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Medical Forum / Diseases and Disorders / Prostate Cancer / April 2005

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early incontinence progress

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Wayne Fulton - 14 Apr 2005 23:14 GMT
It's very early yet, but so far, for me, this incontinence thing seems
extremely hopeful, better even than in my dreams.

My catheter was removed Tuesday afternoon (following RRP two weeks ago).
It seemed pretty bad immeditely after, things got very wet immediately,
and stayed that way, worse than I ever imagined.  The Depend Maximum
Protection diaper did the job fine, but it seemed a constant dribble,
needing a new one about every 5 hours.  The worst fears of this lasting
months were really scary.  The first night, I needed a new diaper about
3 AM.  Second day too (yesterday) was also very wet, heavy diapers still
about 5 hours. However during that second day I started developing
slight sensations of needing to go pee ... not like before, but some
sort of awareness nevertheless, and I made it a real point to go try at
every opportunity, every hour or two.  Sometimes I couldnt, but often I
could, even if it wasnt much, and peeing any at all then seemed a big
deal.

Then amazingly, the second night (last night) was relatively dry, maybe
not 100%, but close enough for now, a really tremendous difference.  
Didnt have to get up during the night, and the diaper was quite light
this morning. And so far all day today, I'd call it nearly dry too, with
only slight exaggaration (not sweating the small details yet).  I am
really amazed and thrilled, I wasnt expecting this progress, not this
early.

I cant tell you what a relief it is to see the strong improvement, as it
was my biggest fear.  I've had good luck all the way.

My concern now is that peeing is still nothing like before. Takes
several seconds to figure out how to get it going, sort of different
now, but it works. That part is OK, I'll get the hang of it.   However
its a fairly weak stream, not more than 50% of before, strong enough
only to make it to the middle of toilet bowl - the back side is out of
reach so far.  

So this weak stream causes concerns about blockage or other such unknown
problems.  However rationalization tells me several things, its very
early yet, my bladder doesnt get nearly full yet, and probably there is
some healing still required, due to the catheter if nothing else.  And
there is slight improvement as the day goes on.  And it is working.

Is this weak stream reasonable at this point?  And not necessarily any
sign of any problem?  I assume so, but a little reassurance would go a
long way right now.

Overall, this experience is nowhere near as bad as I feared.

Oh Happy Day (picture Snoopy dancing)
jhlms - 14 Apr 2005 23:28 GMT
I'm sure all of us have experienced the same fears, misgivings and
trepidations that you have detailed here.  Sounds to me like you're well on
the way to recovery (incontinence-wise).
As for me....before my surgery, I could drill a hole in the porceline (sp?),
but now a substantially weaker stream.  Something I simply have gotten used
to.
Time is the key to muscle and nerve regeneration.  Personally, I wouldn't be
too concerned unless the situation fails to improve over the next few
weeks.....After the next couple of months, I'll bet you, too, will be
reassuring the next new guy on the block.
Congrats on your success so far..................

jh

> It's very early yet, but so far, for me, this incontinence thing seems
> extremely hopeful, better even than in my dreams.
[quoted text clipped - 44 lines]
>
> Oh Happy Day (picture Snoopy dancing)
Ron B - 14 Apr 2005 23:39 GMT
Good news, Wayne.

I'm still flling up about 4 depends or pads a day.

Always better when lying down.

I squirt when I turn to get out of bed and get up from sitting...other
times too.

(I'm 3 weeks after the full RRP and 12 days after cath removal.)

From this group...I can tell you that our insides and bladder have a lot
of healing to do.

Hopefully, things should keep getting better.

Good wishes,

Ron B.

Chicago
\(Jack\)ie - 15 Apr 2005 00:56 GMT
About the same as you Ron.  3 weeks to the day after RP and 8 days after
having the cath removed.  I don't use as many Depends as I use pads also
and just change them but otherwise about the same.

All in all the surgery was the easiest of all.  The incontinence a pain at
times but nothing that I haven't been able to handle.  The sex
part.....that's still something that I have yet to face.

(Jack)ie

> Good news, Wayne.
>
[quoted text clipped - 17 lines]
>
> Chicago
PeteBos - 15 Apr 2005 01:03 GMT
My RRP surgery is coming up on May 5th and the bladder control
is my worst fear. I've been told age is a big factor in how you
make out. I'm 65, I would like to know how quickly others my age have
recovered (or not recovered).

Pete

> Good news, Wayne.
>
[quoted text clipped - 17 lines]
>
> Chicago
I. P. Freely - 15 Apr 2005 06:11 GMT
I'm 61. Still wearing full diapers @ 6 months post-RP.
So?
Motto: It's just pee.
I'm getting much drier, so I'll be dry, or darned close to it, some time
this year. But even if I don't dry up completely, I can think of many far
worse nuisances, many of them associated with the other PC treatments, some
of them much longer lasting than diapers.
Worst case? Diapers are expensive underwear (he says in cool weather). Most
of the other PC treatment side effects are actually MEDICAL, physical,
and/or social problems, not clothing. Beats chronic tennis elbow, back pain,
and a few dozen other hassles I can think of.
Best case? You dry up within days post-catheter.
Moat likely for you? A few weeks in diapers, a few months wearing pads in
your jockey shorts, a few more months with pads Just In Case.
'Member: It's just pee, it's just another underwear option, and it's
temporary.
It's also convenient as hell sometimes. ;-)

I.P.

> My RRP surgery is coming up on May 5th and the bladder control
> is my worst fear. I've been told age is a big factor in how you
> make out. I'm 65, I would like to know how quickly others my age have
> recovered (or not recovered).
Steve Kramer - 15 Apr 2005 11:58 GMT
Age is certainly a factor, but your doctor's skill is probably the biggest
external factor.  In reality, the biggest factor overall is the
individuality of the human being, so my experience at 46 could mirror yours
at 65 and someone at 80 could do better than both of us.

The more important factor is almost everyone will lose it and regain it down
the road.

Signature

PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA  .1  .1  .1  .27  .37  .75
EBRT 05-07/2002 @ 47
PSA  .34 .22 .15 .21 .32
Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05
PSA  .07 .05 .06 .05
non Illegitimi carborundum

> My RRP surgery is coming up on May 5th and the bladder control
> is my worst fear. I've been told age is a big factor in how you
[quoted text clipped - 26 lines]
> >
> > Chicago
peter*pan - 15 Apr 2005 16:20 GMT
I'm 23 months out from surgery in a week.  I continue to see improvement,
down to 1 pad every 12 or even 24 hours now.  The most interesting thing
is that where even just a couple of months ago I would start to leak
substantially in the evening (fatigue?), that has mostly stopped.  And
even heavy exercise (walking/running/yardwork) makes little difference
now.

I started with full depends plus the guards (as I.P. does), then just
guards.  I switched to Poise Extra Plus as they were smaller, and recently
to Poise Plus (even smaller) - don't care for the pink decor, but after
DREs, caths etc, who cares!

I was sure I would leak forever.  Don't think that anymore.
I. P. Freely - 15 Apr 2005 16:36 GMT
Are you still doing your Kegel workouts 3x a day? My doc says that's nec to
prevent evening fatigue.

I.P.

> I'm 23 months out from surgery in a week.  I continue to see improvement,
> down to 1 pad every 12 or even 24 hours now.  The most interesting thing
[quoted text clipped - 9 lines]
>
> I was sure I would leak forever.  Don't think that anymore.
peter*pan - 15 Apr 2005 19:58 GMT
I have probably done 1000s of kegels.  Have tried different variations on
technique (where do you really squeeze!?!), frequency, intensity, etc.
And I will keep doing them.  But since I have been doing them for almost 2
years, and the evening leakage has only slowed recently, I don't know that
the kegels help there.  My uro thinks that kegels help with the stress
incontinence, but that healing is responsible for the rest.  If all it
took were kegels, I would have been dry a long time ago.
I. P. Freely - 16 Apr 2005 06:37 GMT
In one sense, that's encouraging, in that that's been my experience, in a
shorter period of time. Quite dry most of the day, wetter in the evening,
Conscious Kegels stopped even the firehose and sneezes from the first day,
but do very little for the other 16 hours in the day.

I.P.

>I have probably done 1000s of kegels.  Have tried different variations on
> technique (where do you really squeeze!?!), frequency, intensity, etc.
[quoted text clipped - 3 lines]
> incontinence, but that healing is responsible for the rest.  If all it
> took were kegels, I would have been dry a long time ago.
kdsoderquist - 15 Apr 2005 22:29 GMT
Hi Pete,
I'm 67 had my RRP on Mar 9. I never wore a diaper and after one week was
nearly dry all the time. Now I wear a pad only for strenuous exercise.
Good luck on your surgery and welcome to the group. We are all individuals
and react differently to the surgery.
Come on back after and let us know whats happening.
Ken

> My RRP surgery is coming up on May 5th and the bladder control
> is my worst fear. I've been told age is a big factor in how you
[quoted text clipped - 26 lines]
> >
> > Chicago
I. P. Freely - 15 Apr 2005 00:53 GMT
I peed like a fire hose -- better than I had in 30 years -- and could shut
it off in a blink -- the same day the catheter came out. ZERO delay; point
and shoot -- NOW and on steroids. But while very dry and relaxed while
sitting or lying down, I still filled a diaper every 2-4 hours until several
months later while up and around. I'd watch that weak stream carefully; if
you can't stir up quite a racket with the stream soon (I didn't say anything
about AIMING it successfuly; how do you  point a toad?), but it should make
a 20-year-old jealous of the stream. And do NOT abandon the mattress pad;
you will probably really cut loose overnight once or twice before this is
all over.

I.P.

> It's very early yet, but so far, for me, this incontinence thing seems
> extremely hopeful, better even than in my dreams.
[quoted text clipped - 44 lines]
>
> Oh Happy Day (picture Snoopy dancing)
Wayne Fulton - 15 Apr 2005 23:03 GMT
>I'd watch that weak stream carefully;

Yeah, it was a problem afterall.  I got up this morning and peed, but it was a
really weak steam which took a long time.  Then thereafter, I really couldnt
pee again.  I tried several times during the day, but it just wouldnt come
out, just a little dribble.  Strange sensations, not really sure what hurt,
but it hurt to try.  Disappointing, I had thought I was doing so good.

So I went to the doctors office this afternoon, and was given instruction in
the temporary self-catheter.  I havent tried it yet for myself, but in the
office, it immediately emptied about a pint and really helped.  No blood clot
was visible.  The process didnt seem toooo bad, and I think I can handle it if
still necessary.  Seems it ought to have sort of rotarooter effect too, so I'm
hoping it will clear up soon by itself.
 
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