Incontinence following prostatectomy

hi adb8s, My husband has had little difficulty with incontenence. He was very freaked out about it prior to surgery. He still wears a lite pad on a daily basis, but played golf yesterday without and no leaks and only 10 weeks post surgery. It is different for everyone, but he is doing what i think is an amazing job.

You are new here, and sorry that you are joining us, but you found the right place. You will get multiple answers. If you are newly diagnosised, then some more info would be helpful. PSA, stage, age, current health statis, etc..... That will help others to give you info. good luck to you and keep posting. this is the place to be. Courtney

Hi there abs and welcome to the site.  Incontinence is always a topic of discussion in here.  I've "bumped" a few posts to the top for your perusal.  If you hunt back through a few pages of posts I'm sure you'll find more.  You'll soon see some have very little incontinence while others have more than usual with many of us somewhere in between.

Good luck to you.

;o) Linda & Bob

Vet...

Thank you for sharing your experience with me...The following is a somewhat edited version sent to another member of the forum sent off line...

After three biopsies - ~ 15 cores/biopsy - a small amount of cancer was found in one core of the biopsy - my Christmas present 2005...My PSA was ~5.1 at that time...A subsequent CT and bone scan were negative ...After some deliberation I finally decided to have a robotic assisted radical prostatectomy which took place at Cornell Presbyterian Hospital in NYC on Wednesday, May16th...The PSA at this time was 5.3...I was discharged the next day...The following Thursday, May 24th, I had the catheter removed but by evening I had to return and have another one inserted because I could not void - apparently from swelling...As this was the eve of the Memorial Day weekend I had to wait until Tuesday, May 29th, the following week to have it removed a second time...Though I have no explanation I experienced much more discomfort from the 2nd catherization than I had experienced the first time...On Thursday I drove to my home in Western Pa for some R&R...

Of the trifecta of issues - removal of the cancer, incontinence, and ED - the issue of incontinence was a very close 2nd of my list of concerns - much more so than ED...I am very active, e.g., biking, hiking and jogging...I was not happy to find that I was incontinent a day or two after the catheter was removed...At this time I have no problems at night either sleeping or when I get up to go to the bathroom...By the time I have breakfast the situation changes...I find that I "leak" whenever I get up after sitting but more disturbing I constantly "dribble" if I set off on a brisk walk for example...Since I was advised not to jog at this point good long walks are the next best thing...

I have been doing the Kegel exercises recommended by the Doctor....These consist of a number of "short" and "long" cycles and take about 10 minutes to complete...It was recommended to repeat these exercises throughout the day for a total time of ~60 mins...The last several days I have gotten very religious about doing them...Unfortunately the exercises do not appear to have had any effect...In fact, I feel they may be making the situation worse...Very discouraging...

I did speak to my Physician's nurse yesterday and she advised that post surgical incontinence is normal and that it is very important to keep up the exercises...She also indicated that it was not possible to tell how long it would take to resolve the incontinence for any particular patient...I pretty much concluded I best keep a "stiff upper lip", do my exercises, and eat my Wheaties...

So that is pretty much were things stand now... Any advice or information would be greatly appreciated...

Again, thank you for sharing your experiences...

arb8

Hello adb8,

Did you have your DaVinci procedure May of 2006 or 2007? Because that would make a big difference in what you can expect.

Glen

ADB,         RE:  A PATIENT PATIENT

Remaining optimistic (Important!) while managing incontinence was/is very challenging for me.  Your bladder was moved, stretched, and re-attached to the urethra.  The bladder still has an unconsciously controlled valve that must be supported by your kegel activity.

It takes some of us more time than others to learn this new form of control.  Developing the kegel muscles and your recruiting patterns for utilizing these muscles 24/7 seems ominous, right up to that point where you find your pad only has some minor spotting after a day of full activity.  For some, it happens immediately.  For most - somewhere in the 2 to 3 month time-frame.  Others take even longer.

Discretely changing pads is annoying but not an impossible task.  Don't let the annoyance keep you from (realistic) optimism that you will regain control.

ICTHUS!

C^Cedar

Hi adb8,

There are a lucky few that will suffer little or no incontinence. My doctor predicted 10 weeks for me, and that was right on the mark. I followed his instructions, and did the Kegel exercises everyday. It seemed however that improvement would never come, but just as I was losing hope; Bingo! I started to regained control. This happened in stages, and if memory serves me; I would say at the 4th, 7-8th, and 10th week is where the improvements occured. In most cases it was very dramatic. I went to sleep one night after having my usual 6-8 Depends day the next day just 3-4. The same improvement occured in the 8th week; one day just a Depends or 2. The last couple of weeks I just needed Serenity pads; by the 10 week I was 99% dry.

It has now been a year + 3 months, and I feel as if I am back to normal. I'm sure that my improvement would have been a great deal faster had I not over exerted myself and suffered 2 hernias. Those surgeries set my recuperation back 6 months. Listen to your doctor when he/she says don't lift anything heavier than a half gallon of milk because I did not. I'm older and wiser now, and would hope others can avoid my foolish mistake.

Good luck to you, and I'm sure you will heal faster than I did. Just be patient, do your Kegels, walk everyday if possible, and don't lift anything that weighs more than 10 pounds till your doctor says it's OK.

Glen

Hi ~ abd85,                 W elcome to…                                       H ealing W ell                                                                                              and                     A    “ Special ”    W arm W elcome   to   You !   Thank you for allowing “All of Us” to walk with you… on “Your Journey”   (Direct Link ~ just click on the title below and a new window will open!   Reminder … click on the REFRESH icon once you get there) Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :)   In Friendship ~ Lee & Buddy

Bird6,

Yes, my physician prescibes walking around nude with a styrofoam cup to learn control.  I think using this technique on the stairs helped me most.  My physician recommends walking around the garage as unless you live alone it might be a little too much excitement in the house!

After awhile, as I leaked less, I would use an old t-shirt as a rag and just stay naked.  This not only helped me learn control, it also helped keep me dry.

I feel retaining pressure in the bladder and trying to keep control is a good exercise, too.  I try coughing really hard with a full bladder - over the toilette!

Keep exercising - both kegels and walking -  and be patient.  you will heal!

ICTHUS!

C^Cedar

Bird6,

I feel it is not so much "better sphincter control when the bladder is full" as much as that when the bladder is holding something, generally the unconsciously controlled valve on the bladder is closed and only needs to be supported by your kegel activity.

I don't think it is so much "the bladder sends automatic signal direct to spincter?" as your kegel work tightening the sphincter (the sphincter that you consciously create) eventually learns to communicate with the smooth muscle bladder valve to open and close.  The bladder after surgery has been stretched and this not-consciously-controlled valve (like your heartbeat is not consciously controlled) often just stays open for awhile until it becomes accustomed to its new "stretch" position - and importance!

If you have some time, possibly read my thread on "Zen and the art of.... continence" (currently on page one).  For those of us that do not achieve immediate continence, the "elevator kegels" discussed there seem especially helpful.

I also STRONGLY recommend that you look at the direct links on Bluebirds "Helpful Hints" thread and read about doing kegels on the stairmaster!  Bluebird is famous for helping all of us here in this community find what we need - and to use our talents and knowledge to join in helping others where we can.

I myself have regained most continence (I drip a little each day - as I unload trucks....) as I approach the 4 month-post-surgery mark.  Now I look toward E.D. (erectile dysfunction) rehabilitation.  While it may be a little soon for you to work on this area, I heartily recommend you follow all of the threads on E.D. as well.  A few weeks after surgery, it's all about keeping the circulation going to the nerves.

Social comparison can lead to unrealistic expectations about how long it takes an individual to heal.  Physicians are not only very busy - I feel they also have to be "oh-so-careful" what they say - or even what they appear to agree to if we make a statement in front of them.  They know that we must stay positive about our futures.  Hope for the best but don't lose your joy if some healing process takes a little longer for you than it does for another. 

Your new friends here can each share their stories!  We are all healing.  Be patient.  You will regain continence.  Stay with us!

ICTHUS!

C^Cedar

Bird6,

The five colors are 5 different colors of 8 servings of Fresh Produce recommended by the FDA Food Pyramid for your diet each day.  It's to ensure a variety of vitamins and phytochemicals.  The idea is to eat whatever is at "peak of season" as these items also have the most nutrients.  Many are believed to be anti-carcinogenic.  Some are believed to be especially beneficial to patients with prostrate cancer.

Here are "The Five Colors:"

Purple/Blue:    e.g., Plums, Eggplant

White:    e.g., Bananas, Cauliflower

Red:    e.g., Raspberries, Tomatoes

Green:    e.g., Kiwi, Cabbage

Orange/Yellow:    e.g., Oranges, Carrots

It's not an exact science.  It's "art" to help people both understand the need for diversity and to eat the recommended daily servings of Fresh Produce.

A major perk of my job is that I must sample whatever is best of over 500 different Fresh Produce items six days a week.  (Today, Rainier Cherries....   They are yellow!)  Our crew has to report on the quality of these products (e.g., "Are these sweet?") to the customers.  :)       ...ICTHUS!

C^Cedar

Dear Evans11,

You are the only one besides me (that I have read, at least) on this forum who mentioned having a stricture.  I just went through that battle and had my stricture dilated one week ago today (June 12).  The doctor also removed a "stone" from the stricture area.  My stream is now much, much, much better... when I can retain urine in my bladder.  The only way I can do that is by (1) sitting, (2) laying down, or (3) using my penile clamp.  If you should read my former posts, you will note that I too have struggled with incontinence and I am now at four months post surgery.  It just seems not to get any better no matter what I do. 

But the real reason I wanted to respond to your immediate past post is something my wife read on the internet (she didn't tell me the particular site, but it was one of the big hospitals) the night I had my stricture dilated and stone removed.  This site said that dilating a stricture is a temporary fix and that it will come back in time, along with another "stone".  That was disheartning to me because my doctor, in keeping with his past practices, did not explain anything about the procedure or its successes or failures.  He just said I needed to have the stone removed and I was all for that.  He did that, without cutting I might add, but now I have to look forward to it coming back?!!  I am getting ready to find a new urologist in the Dallas area whom I hope will be a little more helpful and informative.  Anway, I am wondering if that is what has happened to you?  Is that stricture back and if it is, most likely a stone will form and for sure and there just might be no control over leaking if that happens.  Surely there is something more lasting that a good urologist could do... right?

By the way, I will ask again if anyone can recommend a urologist in the Dallas area.  It seems my urologist is not too interested in referring me to anyone specifically.  And I wonder if any urologist of any skill would want someone already worked on who is still incontinent.  I am sounding negative again, aren't I.  I am just ready for some improvement.

Gene   

Hi everyone,
First I want to thank the forum participants and moderators for providing a fantastic resource. I haven't posted before, but just reading others posts has helped me cope with my situation. You have all been an inspiration to me.

My surgery went well. I went in Friday, was home Sunday. I am a healthy 55 and I was back to normal activity within a couple of weeks of the surgery. No significant pain, normal bowel function, and I consider myself lucky that everything went well. I am cycling, walking, an occasional short jog, and getting out and about. Not back to work yet, and I probably won't go back until I can manage the incontinence better.

It's now a little over four weeks since I got the cath out. It doesn't sound like a long time, but dealing with the pads and the constant dripping is certainly a trial. I'm OK if I don't drink a lot of liquids and stay seated or laying down. Otherwise, I'm dripping. If I'm active, I'll go through 8 or 10 pads in a day. And sometimes have to change underwear. If I'm not active and don't drink much I'll go through 4 or 5 pads.

There is so much conflicting information around. Do all the Kegels that you can stand. Don't do too many. Be sure and hydrate. Don't drink too much liquid. Drink whatever you like. Don't drink caffeine.

I love my coffee. Haven't been able to give it up, but I only drink two cups a day. I love a drink with dinnner or two, and I'm still doing that, although have not been drinking beer at all, switched to wine.

I'm keeping a positive attitude and doing my Kegels about 5 or 6 sets of 10 per day.

I can't seem to find Cedar Choppers Zen thread. Can someone post a link?

Thanks again for all of the support.