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

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Incontinence - how am I doing

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PeteBos - 21 Jun 2005 03:26 GMT
I had RRP surgery on May 5th and I am grateful that the results were
good. A Gleason 7, but negative margins and no seminal vesicle or lymph
node involvement. My first PSA was < 0.1.

However, my incontinence situation has gone from good to bad. From the
beginning I was able to have a dry pad during the night if I went to
the bathroom every hour or so. The first 2-3 weeks I was dribbling a
lot, going through a pad during the day every 2-3 hours. Then things
improved and if I went to the bathroom when I felt the need I would be
dry most of the day. I was using only 1 pad per day.

Now things have gone south. I'm dribbling a lot again and using several
pads a day. I'm following the advice in the books and trying to hold it
as long as I can, but I dribble a lot before going to the bathroom.
With some urine in my bladder I can stop the stream and then let it go
again so I have some control that way. If I go to the bathroom when I
feel the need (about once an hour) there is little in my bladder and it
just dribbles out. However I dribble in between and go through a lot of
pads.

I realize that I'm still early in the recovery cycle here (almost 2
months now) but I am disappointed since I did so well early on and have
now regressed.

I'm interested if my experience is similar to others out there and if
so, how are you doing now if you are further along, time-wise, than I
am.

Pete
Ron B - 21 Jun 2005 14:34 GMT
Hi Pete.

From what the guys here, the books, and the docs have said...it seems
that your situation is pretty normal.

Not only is it very early for you but
everyone is different and there are ups and downs.

Steps forward and then back.

Hang in there.

Ron B.

Chicago
Wayne - 21 Jun 2005 20:29 GMT
>However, my incontinence situation has gone from good to bad.

My experience is similar Peter.  I'm a week short of 3 months after RRP,
and am using 2 pads a day.  Back at a couple of weeks after the catheter
came out, I was not at all totally dry, but doing really well, and I
actually thought I was going to have an easy time of it.  Little did I
realize that I was developing blockage problems, until I had about 3
incidents when I simply couldnt pee at all (needed a temp catheter
procedure).  The doctor put me back on a permantent cathether for
another week, saying it would help. It didnt really, but then a
dialation seems to have fixed the blockage, because after that, it's
been more like an open pipe.  I seem dry overnight, and never get up at
night, but during the day, I need two pads, which get pretty full. I can
feel it slightly leaking when just sitting there.

Walsh's book says 50% of men were dry in 3 months, so I'm not going to
be in that group.  Also says 80% in 6 months, so I'm hoping.  But he
says older men have more trouble, and I'm 66, so maybe that's the issue.

I do think there is a little improvement, but its very slow.

I was doing a lot of dribbling when I was having trouble peeing.  Could
never pee a strong stream then, and dribbling was often about the best I
could do.  A dialation seems to have solved that, really better now.  
I'm due another next week, and was hoping it wouldnt be necessary.  Now
the only dribbling is when I try to pee every 15 minutes, thinking it
might cut down the leakage.  It doesnt, and waiting for an hour or so
seems better to me, stronger flow, and seems like a bit less leakage in
between. But it is all a mystery to me, I certainly dont have it figured
out.
Steve U - 22 Jun 2005 00:29 GMT
Pete Bos
I remember the 2 month post op period as being very agravating. I was
down to a pad a day by a month, and was itching to get rid of them. I
would go a day or two with no leaks even with lifting etc. then from
out of the blue, while doing nothing but sitting at my desk, I would
get a pee-mail! I was dry from about 3 months on. The progress was not
completly  linear. You are still very early.
Steve U
Glassman - 23 Jun 2005 06:35 GMT
> I had RRP surgery on May 5th and I am grateful that the results were
> good. A Gleason 7, but negative margins and no seminal vesicle or lymph
> node involvement. My first PSA was < 0.1.
>
> However, my incontinence situation has gone from good to bad. From the
> beginning I was able to have a dry pad during the night if I went to

 It took me over 5 months to be dry. Everyone's different. I'm 3 years post
surgery, and other than a sneeze or sexual arrousal, I am pretty much under
control.

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Sinrod Stained Glass Studios
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David S. - 24 Jun 2005 17:49 GMT
As you have seen before, everyone is different.  My experience after RRP was
catheter in for 3 full weeks, this is in August of 2003, and completely
incontinent when the Foley was removed.  No control at all.  That, however,
only lasted a week or ten days.  At first I was trying different Depends
products, underwear, etc., so I do not really know what the change schedule
was, but I went through a lot of diapers.  I do remember that.  Fairly early
on I settled on the Depends Guards and was going through 6 a day for a
couple months, and it seemed to get to 4-5 pads per day where I stayed for a
very long time.  Then I went on Prozac, generic, for unrelated reasons
(prompted by spouse) and found after six weeks or so that I was getting dry.
At that point I made no connection between the drug and the improvement in
my leakage.  The uro did tell me at my next regular visit that they do
prescribe medicines "in the family of drugs as Prozac" for incontinence.
Twice now I have gone off the Prozac and both times my leakage got worse
going from one pad a day to three after about 4-6 weeks (going on or off the
medication the change is slow taking over a month to see a difference).
When it got that bad I went back on the drug.  In my mind that proved to me
that the improvement in the leakage was due to the Prozac.

Lately, however, the leakage has gotten worse.  I had recent surgery for
hernia repair, so I do not know if that has anything to do with all this or
not.  My concern is that the beneficial effects of the Prozac are wearing
off (I cannot see where it does anything for me otherwise).  My uro has
referred me to a doctor who specializing in male and female incontinence.
That visit is the second week in July.  I will report back here what that
guy says.  I know he does the surgery for the artificial sphincter, but I
doubt that he would recommend that as the first alternative (at least I hope
not).  I have seen mixed results on that.  What I have read here is
primarily favorable, although some men with the device still report needing
to wear a pad for occasional leaks, so you are not necessarily pad free
afterwards.  My neighbor claims to know four men who have the artificial
sphincter and are dissatisfied, so he did not agree to the surgery.  He had
his surgery in June of last year and still leaks, so he recently started
using one of the clamp devices.  He is happy with that, but again, he still
has to wear a pad because there is some leakage with the clamp too.  Can't
seem to get away from those pads.

So, the most you can do is the Kegel exercises (to be honest I am not a
believer).  Other than that be patient and wait to see how you are in a few
more months.  If you still leak a lot do your homework and pursue medical
advice and see where it leads you.  Hopefully you will get better in a
couple more months.  I was 55 when I had the surgery by the way and in
reasonably good physical health.

Good luck.
David S.

> I had RRP surgery on May 5th and I am grateful that the results were
> good. A Gleason 7, but negative margins and no seminal vesicle or lymph
[quoted text clipped - 25 lines]
>
> Pete
 
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