gripshift5

53 y.o.; 2 months after RP I had good control when sitting and lying down, but
no control when standing, walking, etc. 3.5 months after RP I still
have no control when standing. (Can only restrain dripping
temporarily, and with considerable effort.) Little if any change
over the past 2 months with regard to the latter, although my pelvic
floor muscles feel like they are getting stronger (I do aggressive
Kegel exercises (way over the 75 minimum prescribed) every day, unless
I overdo it on a given day, afterwhich I take it a little easier the
next a day).

What are my prospects; any suggestions? Anyone experienced the same or
similar pattern of progress? If so, how did you deal with it? Group
response only.

david s

Tom:
56 here, RRP August 1, 2003, 4-5 Depends Guards per day, basically the
same as when the catheter came out August 21st. Had my 90 day follow up
visit yesterday. The doctor told me that it could take as long as a year
and a half to get back to my new "normal" (some guys always have a temporary
loss of control, for example when lifting something heavy). He also told me
that sometimes there can be scar tissue that would interfere with the
sphincter. If my problem persists he may do a scope procedure to see what
is going on in there.
I have seen here guys who are fully continent after the catheter comes
out, and there are some who never get back control and use the external
catheter to get by. Oh, one other thing. My doc told me to plan to do the
Kegels for the rest of my life. He said it is a muscle thing, and it has to
be kept in shape to do its job properly. I do not do anything near 75 per
day. Who told you that number? That seems high to me, but....
Please keep in touch here and let us know how you progress. I hope you
get back control soon. Believe me, I know what it is like.
Thank you.
David S.

john loomis

Hi Tom, sorry you are having these troubles. Do you walk? Walking does
help and I know it is not easy to fit into any schedule. I think it helped
me. I did kiegels too.
I now run on the weekends 4 miles Sat. and Sun. I used to walk every other
day or any day I could at least 40 minutes. I did fast walk. I walked with
the catheter in and had to lubricate the darn thing since it slid....
Enough of that.
did you talk with the Dr.
I think you will get better as time heals all, and certainly walking cannot
hurt.
I am 4 years since RP. I am 53.
Let me know how it goes. Wish I could be of better help.
Maybe you are trying to hard?
75 kiegels.
I just practice starting and stopping pee. 2 or 3 times per pee.
Walking was a help.
Good wishes, and let me know if I have helped or was a pain in the bladder!
John Loomis keep trying.....

palmer_ent

hi tom - 58yr, RP 4-15. got continent sitting and laying fairly easy.
two months later, when i walked around i would leak it all out. i
thought, "hell, is this what i got to look forward to for the rest of my
life?"

even had complications from the RP that required two additional
surgeries. even more reasons, that continence was going to be a pipe
dream.

around the 4th month, things started happening and getting better. by
october, was 98% continent. had one week of setback where i would
'leak' about 20 times in one day.

have done real well in november so far.

you will have a problem when you get tired, your muscles will weaken and
you will leak but mainly when you notice it is when you start to get up
or strain yourself.

wishing for you to a speedy dry spell, it's around the corner.

~ curtis

knowledge is power - growing old is mandatory - growing wise is optional

robby

Tom

Its been awhile since I've responded to a post on this group. I had
an RP in Nov 2000 and was following just about the same time line that you
are
following. Just about went out of my mind thinking that I'd have to put up
with
being incontinent. I kept up the Kegels(actually did more than you're doing)
and walked alot.
At around 5 months things began
to improve, slowly and almost unnoticeably at first. At 8 months, I was down
to a single, thin pad
once a day. At three years, I don't need the pad.

For some of us, it takes a little longer than we'd like. Hope things start
to improve for you.
Walking seemed to have helped more than anything else.

Robby

mgperilane

Tom:

I am an infrequent poster but saw your note and other's comments and
wanted to weigh in on my condition also. I just got the catheter out
on Oct 31 and am dealing with leakage. I can lay down horizontal and
no leakage. Same for sitting in a recliner - no leakage. But as soon
as I stand up and move around I feel the leakage.

Now my doctor gave me express instructions that after catheter came
out I was not to do the Klegal exercises other than when I was peeing.
He said I was only to do attempt to stop the stream at its strongest
point for six seconds and then let it go again. He also said walking
was a major part of getting control. He said doing Klegal exercises
otherwise would just exhaust the muscle and frustrate me. This was
completely opposite of what I read in books and materials - which said
continue Klegal exercises indefinitely after surgery. So I am
confused and waiting until my next telephone conference with doc.

My main concern now is not only leakage but also strength of my stream
flow. A bit paranoid that it is not returning to full strength and
not knowing whether to expect it now or whether it is normal to have
it weak. As it is now, only in the morning when there is a build up
is it very strong (actually weaker then before surgery still) but
after I am up and walking around with leakage, my bladder never gets
full enough to leak (doc also said to limit liquid intake). So kind
of makes it hard to (a) build up a stream and (b) practice stopping -
when there is nothing to really stop!

Any thoughts would be appreciated Glen

dale j.

I was given the same instructions by my doctor so don't feel alone. By
the way, Dr. Walsh cautions about doing too many of these excercises,
refer to page 247 first paragraph in Dr. Walshe's Guide to Surviving
Prostate Cancer. He in fact does not mention kiegle excercises that
I've found anywhere in the book. He recommends the above procedure, the
same as your doctor. Also walking.

Dale J.

--
Email: dalej2@mac.com

judamd

You and I had surgery about the same time, July 15th for me. I too am
not continent, pretty much the same pattern as yourself. I am down to
as little as 2 pads per day plus "security" at night which I really
don't need. The 2 pads/day is deceiving however in that this occurs
only on days when I'm home more or less all day and go to the bathroom
at every opportunity. At least now I can wander around the house for
a minute or two before I lose anything whereas a couple of months ago
I would lose everything on the way to the bathroom. If I'm not near a
bathroom I eventually lose everything and it's 4 pads/day.

I can see some improvement, the muscle is definitely stronger. I can
firmly clinch the muscle for as long as 2 minutes whereas before
surgery I could do it for only about 10 seconds. I can also hold a
full bladder first thing in the morning all the way to the bathroom
with no leaking, something I couldn't do the first month post-op.
Also, if I concentrate real hard I can hold it while standing and
walking but only for a few minutes or so until I get distracted. So,
there is progress but it's disappointingly slow. A number of sources
said 3 months is the median for continence. I've passed that now but
I am encouraged by the posts of others on the NG who became continent
months later.

Incidently, the two urologists I have (one for long-term care and the
other who did my lap surgery) are both surprised that I'm still
incontinent. In fact, the one who did the surgery is really
disappointed (hell - he's the one who did all the slicing). I guess
I'm hurting his statistics. Anyway, neither one suggested anything
else to do except Kegels until 18 months have passed. Both indicated
that when I regain continence I will not have to think continuously
about flexing the muscle, it will more or less act on its own with
little conscious thought from me, similar to your neck muscles that
keep your head from falling over. That's good news. If I can
extrapolate my progess into the future, I expect to be dry before 18
months although by "dry" I mean one pad per day to take care of
sneezes which I'm not sure I will ever be able to control.

Good luck to you and keep us(me) posted on your progress. You, I,
David S., et al are not the "wunderkinds" who are dry on day one - we
have our own little sub-club.

Take care,
Dave Perry

leonard evens

By three months half of all patients are continent. By one year, almost
all are. So keep up the Kegels and be patient.

palmer_ent

hi glen - so far, you will find opinions on the kegels to vary - doctor
to doctor.
hell, they can't even agree how to clean out your bowels before surgery.
some want you to drink a gallon of go-lythly and others say one little
bottle of cit. mag. some want you to check in the day before, others
will allow you to check in a couple of hours before surgery. and so the
list goes. i didn't find the kegels to do a whole lot of improvement
for me. i started at rock bottom - couldn't' stop a drop of urine, if
my life depended on it right after they pulled the catheter out at the
doctor's office. so, for you to be this far along and you just got the
catheter out on oct 31, that's quite an improvement.

now, the strength of the stream is another story. about 15% of the RP's
have some type of scarring that affects this. can be in the bladder,
which means you feel like you have to pee all the time and the urgency
is gotta go - right now, when it hits, to scarring in or around the neck
of the bladder where it is all sewn together and in restrictive and you
pee like you did when you had BPH.

if you have scarring problems, it will usually show up when 4-6 weeks
after the catheter is pulled.

the good news is the this can be corrected and i'm living proof. i had
all that was described above and now, i'm back to what i was before any
of this hit the fan.

best of luck.

~ curtis

knowledge is power - growing old is mandatory - growing wise is optional