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

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Continence - good days and bad days

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heelas@hotmail.com - 13 Dec 2004 17:35 GMT
I am 3 weeks post op and doing well in the continence department, but
am still baffled by why there are good days and bad days.

I have gone 3 or 4 days with absolutely no leaking whatsoever, but
just when I'm pronouncing myself prematurely 'cured' the next morning
I find myself back to square one. Then maybe for a couple of days
things are bad before another improvement comes along.

It does not seem to make much difference how much exercising of the
muscles I do. The good and bad periods are unrelated to that. The only
general comment I can make is that walking in the mornings helps a
great deal and gives confidence too. Also, as the day goes on and
maybe I get tired, it gets a bit more difficult to remain dry.

Now here's the question. Why does this happen? You would have thought
that heaing inside, especially around the pelvic floor area and the
bladder neck would continue at a set rate. Maybe with some people it
would be faster than others, depending on their weight and general
state of health, but you would get a steady improvement and not the
three paces forward and two back that I seem to experience.

Sitting down is a great temptation on the bad days. It's comfortable,
but not very good for recovery. Too tempting when getting up causes
problemds though.

Is anyone else's experience the same as mine?

Robert
c palmer - 13 Dec 2004 18:17 GMT
hi robert - it's common for this to happen.  i still have this situation
and i'm going on 20 months post op.  

a couple of things to remember.  they ripped out the original plumbing.
that includes the original bladder valve.  the replacement valve is
about 1/2 the size and is made out of different muscle tissue.   you've
got another part of the body doing a function it wasn't designed to it
as a primary function.  

the muscle tires easier and when it gets tired, it leaks.  usually in
the night time hours.

you will find that you will take 3 steps forward and 1 step back in the
recovery.  normally, it is not always straight forward all the time.

and as always, your mileage may vary in the recovery process as compared
to others.

~ curtis

knowledge is power - growing old is mandatory - growing wise is optional    
"Many more men die with prostate cancer than of it. Growing old is
invariably fatal. Prostate cancer is only sometimes so."
http://community.webtv.net/PALMER_ENT/doc
I.P. Freely - 13 Dec 2004 18:28 GMT
In just the past three days, I've had a 1-diaper day and a 5-diaper day. In
the past 6 weeks I've had 40 dry nights and two full-on bed wettings, at
about Day 30 and last night. I still minimize my standing time because I'm
tired of the constant squirting. My Kegel muscles have no problem shutting
off a strong flow, but I mentally can't Kegel every standing moment.

I.P.

> I am 3 weeks post op and doing well in the continence department, but
> am still baffled by why there are good days and bad days.
[quoted text clipped - 24 lines]
>
> Robert
dale.j. - 13 Dec 2004 22:59 GMT
> I am 3 weeks post op and doing well in the continence department, but
> am still baffled by why there are good days and bad days.
[quoted text clipped - 24 lines]
>
> Robert

Sounds normal.  Everybody is a little different and times vary from
person to person.  Climbing and walking are the best in my opinion, at
least it worked for me.  Three weeks is not a very long time, I'd say
you're doing great, better than I was at 3 weeks.  My big turnaround
came at about 8 to 10 weeks post op.  At 3 weeks you are still very
early in this.

Dale J.

Signature

Email:  dalej2@mac.com

frankB - 14 Dec 2004 01:39 GMT
> I am 3 weeks post op and doing well in the continence department, but
> am still baffled by why there are good days and bad days.
[quoted text clipped - 24 lines]
>
> Robert

Here's my story, Robert.

 I had RRP 9/3/04 and haven't stopped leaking since. After the Foley was
removed it took me a few weeks to learn how to live with the situation. I
use Depends Guards and I wasn't changing them  often enough and I kept
leaking through my pants. When I had the Foley removed the nurse sent me
home with a small Kotex pad!!  You'd think she'd know better. I was a mess
after 10 minute ride home!!

Any way, I think I'm making some progress although I'm not sure it's
physical progress or I'm managing the situation better. I still leak a lot
but I have no trouble holding a fairly full bladder and have no problem
stopping and starting the flow!  I can't figure out why, if I can hold it
like that, I can't control the leaking. I wear a pad all the time and
usually go through 4 or 5 a day although if I put the pad on correctly and
don't wait too long to change it, I can manage not to leak through to my
pants. I have a good supply of Jockies on hand and use them unsparingly.

Sleeping,I have no problem. I usually wake up with a pretty dry pad, after
sleeping through the nite(That's the good news) and am able to control
myself without leaking till I get to the bathroom and have a nice strong
flow. That's another reason why I think I'm making progress...In the
beginning I usually couldn't control myself when I'd get up to go to the
bathroom. Now I don't have that problem (usually). When I'm sitting I leak
hardly at all.

Like most of you said, I have good days when I feel like I've turned the
corner and then the next day I'm back to square one. It seems that when I do
The Kegels I have more problems. Maybe I'm not doing them right. I was told
to squeeze like I am trying to hold a quarter between my cheeks. Does that
sound right?

Some of you say that walking helps but that's when I have the most trouble.
When I go to the supermarket I can't spend too much time going up and down
the aisles or else I have little kids staring at me. It really seems to help
if I go to the bathroom frequently so I don't have anything to leak. That
means going even when I don't feel like I have to and I usually forget until
it's too late.

Well, that's my experience, for what it's worth. I can tell you that aside
from the physical discomfort, psychologically, it gets you down. I put off
doing things that entail walking and when I'm sitting I get annoyed if I
have to get up for something. I feel as if it will never end. But it's only
been 3.5 months and as long as I think back to the first days and realize
that things are better and will get better I feel better.

I don't think my case is really out of the ordinary and I hope to reach the
degree of continence a lot of you have.
I.P. Freely - 14 Dec 2004 02:25 GMT
Describes my experience quite closely. But why bother with pads that
occasonally let your pants get wet, when diapers would keep your pants dry?
I use Depends "briefs", standard absorbency for around the house and extra
absorbency when I'm out and about. They're not observable under pleated
trousers, and zero problem when using a restroom urinal. Not a drop has
escaped them yet except for two floods I slept through when sleeping
unusually deeply. The diapers are really effective and easy to use.

I.P.

"frankB" <f.bartolomeo@worldnet.att.net> wrote >
>   I had RRP 9/3/04 and haven't stopped leaking since. After the Foley was
> removed it took me a few weeks to learn how to live with the situation. I
[quoted text clipped - 42 lines]
> I don't think my case is really out of the ordinary and I hope to reach the
> degree of continence a lot of you have.
frankB - 14 Dec 2004 15:08 GMT
> Describes my experience quite closely. But why bother with pads that
> occasonally let your pants get wet, when diapers would keep your pants dry?
[quoted text clipped - 5 lines]
>
> I.P.

I do use the briefs when I'm going to be in a situation where it would be
inconvenirent to change pads but I'm really uncomfortable in them. The
sweating annoys me and I think I get a little lazy in trying to control
things, they work so well. I too have an arsenal of weapons and depending on
the situation I make my choice.

Thanks for the feedback>
Danny McCarty - 15 Dec 2004 22:14 GMT
>Subject: Re: Continence - good days and bad days
>From: "I.P. Freely" fuhgeddaboutit@noway.not
>Date: 12/13/2004 8:25 PM Central Standard Time
>Message-id: <%csvd.472$XP1.190@fe03.lga>

hmmm  I find the depends briefs very hot and sweaty and uncomfortable.  I use
them only when I -have- to stand long periods in public view with no chance of
going to a restroom, like onstage.  I prefer carrying three or four pads in my
pockets on a days business or shopping trip.
>Describes my experience quite closely. But why bother with pads that
>occasonally let your pants get wet, when diapers would keep your pants dry?
[quoted text clipped - 61 lines]
>the
>> degree of continence a lot of you have.
A Sherman - 16 Dec 2004 13:29 GMT
> hmmm  I find the depends briefs very hot and sweaty and uncomfortable.

Try Depends "underwear", not briefs.  These have an almost fabric-like
"breathable" cover.  I find them very comfortable, even preferable to guards.
I like to tuck a pad cut in half into the underwear to absorb any leakage and
use the underwear primarily for insurance.  Very easy to change and
economical...

Al
frankB - 16 Dec 2004 17:16 GMT
> > hmmm  I find the depends briefs very hot and sweaty and uncomfortable.

,

> Try Depends "underwear", not briefs.  These have an almost fabric-like
> "breathable" cover.  I find them very comfortable, even preferable to guards.
[quoted text clipped - 3 lines]
>
>  Al

Hi Al,

I haven't seen the Depends "underwear" but it sounds good.I'll keep an eye
out. Also, part of my "arsenal" is Depends Boost liners. They're like a pad
but they don't have the plastic shield on the back. I used them in the early
days when I had to use the briefs and I wasn't sure how much protection they
would give me.
Cost is a big concern of mine, so I'd like to find what works best most of
the time and not have to buy a bunch of things.

Thanks
Frank
ButtercupsDad@dog.net - 14 Dec 2004 12:33 GMT
I am sixteen months post op and using 1-2 pads per day.  Even at this
point I still have "good days" and "bad days".  I work in an office
and some nights I throw away a pad that is heavy, ready for a change,
and on days like yesterday I marvel at how light the pad is, meaning
although still soiled, it is very little.  So what is the difference?
I understand why there is a difference on the weekends when I am more
active, up and down, stooping, lifting, etc.  But I have no idea why
one work day is different from another.  Just another of life's little
mysteries I suppose.

Good luck to you.
Thank you.
David S.

>I am 3 weeks post op and doing well in the continence department, but
>am still baffled by why there are good days and bad days.
[quoted text clipped - 24 lines]
>
>Robert
heelas@hotmail.com - 14 Dec 2004 14:18 GMT
Thanks everyone for the reassurance. Looks like I am doing OK.

My experience here in UK differs from yours. I was in hospital 8 days.
They do not discharge you with the catheter, but wait to remove it and
then send you home the following day. This enables the surgeon to
check that all is well before you leave his care. I must say I would
not have liked to be at home with the catheter, feeling the way I was,
especially immediately after the darn thing was removed and I was
leaking big time.

24 hours after the catheter was removed, I was able to go home by car,
but was advised I should not drive myself for 4 weeks. Some days I was
completely dry even in the second week, but that did not mean I was
comfortable. I started walking a block or so and sometimes that was
all I could manage because of the constant feeling I was about to
leak. In reality this was no more than a drop or so, but it felt more
than than and does nothing for your confidence, does it?

Now after 4 weeks I can go to the shops as I did this morning, and
walk some distance with no pad at all. So I count myself lucky. Was it
the treatment which differed, or the fact I am pretty thin and
reasonably fit?  My weight is 152 lb. Or just the luck of the draw? I
don't know.

I'm also not sure about the exercises, but find them useful
immediately after having a pee. It's almost like I have to do some
work to ensure that valve is closed. Especially if I am going to sit
down, which means gravity takes over and everything relaxes without my
intervention.

Walking I am sure helps me. When I miss out a walk in the morning, the
rest of the day suffers. I try and maintain a slight inward pressure
as I walk. For the first couple of weeks, I had what I would describe
as jitters, with the occasional teaspoon dumped into the pad even on
good days, but this week so far no alarms at all.

Before my operation, the surgeon said he had done 600 so far. Only 2%
of people had any long-term incontinence. It took up to 3 months, he
said, for some to be dry. I asked him exactly what he meant by
incontinence, and he said "wearing a pad" so that gave me reassurance
before the procedure. Afterwards, especially on bad days, I doubted
his word... Anyway, that's my experience so far and today - no pad.
Maybe tomorrow will not be as good, who knows?

I have a follow up appointment on 20th of this month and a first
post-op PSA test. Apparently the hospital are using a new, more
critical method of testing PSA now.

You are probably thinking that 8 days in hospital must cost a lot -
but don't forget that in UK we have a dual system whereby the National
Health Service treats most folks free. You can have insurance, as I
did, which gives you a private room and choice of exactly when it is
convenient for you to go into hospital. Frankly, my room was more like
a luxury hotel than a hospital, and the care was really first class.
All that helped. Even the food was great when I could face more than
soup.

Best wishes to everyone, whatever your stage of recovery. Reading
about other people's experiences is a great help I find.

Robert

>I am sixteen months post op and using 1-2 pads per day.  Even at this
>point I still have "good days" and "bad days".  I work in an office
[quoted text clipped - 9 lines]
>Thank you.
>David S.
dva1264@juno.com - 14 Dec 2004 15:21 GMT
I'm about three months post op, and for the first month, it seemed like
it would never stop - very depressing. Then one week, after taking
Entex and doing my Kegels regularly, it suddenly got dramatically
better. As has been said, everyone's different, but keep it up. If you
are having several good days in a row as you describe so soon after the
op, it sounds like you are doing very well. I'm no doc, but I think I
can say with a fair amount of confidence that things are going to get
better for you.

> Thanks everyone for the reassurance. Looks like I am doing OK.
>
[quoted text clipped - 71 lines]
> >Thank you.
> >David S.
 
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