Total Incontinence After Prostatectomy

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GerryHE
New Member

Date Joined Apr 2005
Total Posts : 5

Posted 4/24/2005 2:18 PM (GMT -7)

On March 10 I had robotic/laparascopic prostatectomy, with an amazingly quick and painless recovery from surgery itself. However, from the time the catheter was removed on March 21 to the present (April 24) I've had total incontinence--not a bit of control. The urologist/surgeon, in whom I have great confidence, counsels patience only--no exercises or medication or anything else. He says if no improvement in 6-12 months we will consider other options. I've never heard of anyone else who has had zero control, although no doubt there are many, and I wonder if anybody has been in that situation who did have the bowel sphincter kick in at some point with the leakage situation resolving itself over time. I am willing to be patient, and I guess have no choice anyhow, but it would be comforting to know that the doc is right and such seemingly hopeless situations do get better by themselves.

Post Edited (GerryHE) : 5/15/2005 9:39:34 AM (GMT-6)

Ron V
New Member

Date Joined May 2005
Total Posts : 3

Posted 5/5/2005 3:00 PM (GMT -7)

Garry: You are not alone. I had robotic laproscopic prostate surgery March 2, and catheter removed March 8. As with you, I fell fine and recoveery from surgerory was quick. However, since that time I have had pretty much total urinary incontinence (not bowel - which seems fine). It is a little over two months and I am using about 3 or 4 pads a day. Night time is prretty much dry as I lie down and my pad is more or less dry in the morning. Same goes for sitting. But when I stand up after lying or sitting for a period, I have no ability to hold my urine. I have consulted with my surgeon, a respected and capable uroligist, who said to come back at three months, and that we would discuss treatments.Of the 105 opeerations done by him on the robot, he says I am the only one to have aalmost complete urinary incontinence.A google review says that this is a long term issue, and I continue to "kegel", and will undertake a more rigorous schedule. Let's stay in touch. Ron

GerryHE
New Member

Date Joined Apr 2005
Total Posts : 5

Posted 5/6/2005 3:09 PM (GMT -7)

Ron: I appreciated hearing from you and would like to stay in touch (although not sure how to do it other than this public way). There are many similarities in our situations. But let me ask you whether you had no bladder control whatsoever after catheter removal and for some time. I think there is a big difference between those with zippo control (still my situation) and those with at least a little. I use about 10 pads a day (down from 15 at first because I've learned to manage and time things better) and can't imagine how to do with less. And even with that I'm trying to drink as little as I can safely get by with. Please let me know what you think. GerryE

Post Edited (GerryHE) : 5/12/2005 8:29:47 AM (GMT-6)

Ron V
New Member

Date Joined May 2005
Total Posts : 3

Posted 5/9/2005 11:27 AM (GMT -7)

Gerry: I had zippo control. However, I am doing my kegels like crazy and have noticed a strengthening of my muscle as I do them, as well as a slight ability to control my steam after I have voided in the morning, and then lie down and wait 1/2 hour and walk to the john holding in my muscle. At that point, i can slightly control my slight stream. Not much of an improvement, but at least some slight change. I will continue to kegel and see if the situation improves. I am thinking this is long term process. Ron V.

Ron V
New Member

Date Joined May 2005
Total Posts : 3

Posted 5/19/2005 3:15 PM (GMT -7)

Gerry: Maybe I have turned a corner. Can now stay dry all night, and walk to john in the morning and void under some control. Whew! Today, for first time, I was able to stand up from chair and walk to John without a "gush". I have been doing my kegels and i think they make a difference. i still "leak" a lot and am wearing 3 pads a day. I searched the web for advice re kegels, as I had trouble locating the exact muscles. The most helpful site was www.miltonstaydry.co.uk. There are three attachments -a guide, an exercise program, andpost-control. I also have done some research re pads and find the Tena Day Pad (blue) vry good.

Hope this is helpful. Ron

GerryHE
New Member

Date Joined Apr 2005
Total Posts : 5

Posted 5/19/2005 4:03 PM (GMT -7)

Ron: Congratulations on progress and keeping me posted. Unfortunately, I have trouble with incredible complexity of this website and I could never read all of your last message. You are welcome to email me directly at gearly@talbotarts.org. I had 60-day phone discussion with doc this past week and he now acknowledges I'm doing less well than average. He agrees it's OK to try Kegel exercises, which he hadn't been enthusiastic about before. But he still thinks it's really just time that solves the problem. If no progress by July, they'll have me in for a look-see. Best regards. GerryE

lychee
New Member

Date Joined Sep 2005
Total Posts : 3

Posted 9/26/2005 8:09 PM (GMT -7)

Hi Gary. I had Robotic/prostatectomy 6-30-05 Detroit and still having total leakage when in the upright position , some control sitting and laying down ,
I have been given DitropanXL 10 mg I do not feel any help after 2 months on the pills .I sure hope to get off these pads some day soon. I live in Fl an my local Uro. said do my Kegal and come back after 3 months. I would like to how your doing now and is there hope ?
Lychee1576@yahoo.com
I

KMiyoko
Regular Member

Date Joined Jul 2005
Total Posts : 72

Posted 9/26/2005 9:11 PM (GMT -7)

Hey Guys,

My husband had the robotic laproscopic prostatectomy on Aug. 22nd. He is doing well. We were told to do the Kegels ahead of time. He did them a number of times everyday for a month. But we also know a few guys that did NOT do the exercise ahead of time....and are having problems. Also I was told age is also a factor with the recovery time. Where did you have your surgery at? We had ours done at the City of Hope with Dr. Tim Wilson, who has done over 1,000 of this procedures.
Do you know if they spared your nerves during the surgery? Our Dr. said that sometimes the nerves take time to recover from surgery even if they are not damaged. Good Luck to you.
Kay

Brian7762
New Member

Date Joined Oct 2005
Total Posts : 2

Posted 10/4/2005 3:49 PM (GMT -7)

This may be a little off topic, but I am about to make a decision on which type of surgery to have: open, laparoscopic or robotic laparoscopic. Do any of you gentleman have a comment for me? Is incontinence more typical with one type of surgery over another? Do other factors matter or is it hit or miss?

KMiyoko
Regular Member

Date Joined Jul 2005
Total Posts : 72

Posted 10/6/2005 12:38 AM (GMT -7)

Hi Brian,

I did a lot of research on all 3 types of surgery. My husband and I picked the robotic laproscopic prostatectomy.

The open surgery has a lot of draw backs: more blood loss, longer surgery time, cutting through all of the muscles and tissues, the surgeons vision is not as clear due to the blood in the surgery site, maginfication is not as good as the robotic (which is magnified by 16x), under anesthesia longer, recovery time is longer from the surgery, cathether is in longer, and also recovery time of continence and potency.

The laproscopic seemed better but it still had a few draw backs that I saw. First of all it does NOT move in the same direction as you would move your hand. For instance if you turn right, the instrument moves the opposite(to the left). Some surgeons don't do laproscopic surgery because they can't compensate doing things opposite of the way the instruments move. It does NOT magnify as much as the robotic. The surgeon has to sit in an awkward position during the whole surgery. It does NOT compensate for any surgeons temors or sudden movements.

The robotic laproscopic surgery has less blood loss, mimimal invasive (5 small holes), magnifies the surgical field by 16x, the panoramic camera that can turn 360, in color, 3 dimensional viewing, instruments are made to move in the direction the surgeon moves, the computer adjusts for and surgeon tremors or sudden movements, shorter recovery time, cathether is out sooner (5-7days), continence is returned sooner, nerve sparing surgery can be done with more precision in a bloodless field. Look at the City of Hope web site and it will tell you about the procedure in more details.
Or look: www.davinciprostatectomy.com
www.intusurg.com

I also found out that it is VERY IMPORTANT to find a surgeon who does a LOT of whatever surgery you decide to have. Don't be afraid to ask the doctor how many he does a week or a month. Also ask what his outcomes of the surgery (continency & potency). All GOOD surgeons would give you the results. It should be up in the 90%. It might not be right away. The City of Hope gives a 50% of their patients are continent after one month, 75% after 3-6 months, and up in the 90's% after a year. The Dr. we saw did 8-10 of these surgeries a week. He has done over 1,000 of these procedures. He started by doing the open procedures, then the laproscopic and now the robotic laproscopic.

I know that a lot of the hospitals now do the laproscopic and the robotic laproscopic surgery. We talked to a lot of different men who had prostate surgery done. Good Luck.
Kay

motopedlr
New Member

Date Joined Oct 2005
Total Posts : 3

Posted 10/7/2005 11:00 AM (GMT -7)

Yesterday I took a giant load off my shoulders in just making a decision to go ahead with robotic. I am stage T1c with a Gleason of 6. My urologist does open radical but agrees with me that my best option is at Vanderbilt. I started thinking about my next move and it seemed to me that if Kegels were an appropriate therapy for post-op incontinence, it would stand to reason that stronger muscles before going into surgery couldn't hurt. Did a little investigating (After my second set of Kegels) and found a few sources who recommend doing so emphatically.

I think that I am taking control!!! I won't let it beat me down! I am making decisions and by doing so don't feel as helpless. Even if my Kegels don't make a difference (I really think they will), at least I'm going to take action.

KMiyoko
Regular Member

Date Joined Jul 2005
Total Posts : 72

Posted 10/7/2005 11:43 PM (GMT -7)

Hi motopedlr,

Sorry to hear about your cancer. Good Luck!! There is hope. Just ask lots of questions. It will make you feel better with the more information that you have. Remember no question is stupid. I went with my husband to all of his appointments. I had a BIG binder with all the info I collected. I wrote all my questions and his questions before the appointments. I left spaces for the Dr.'s answers. This way we didn't forget to ask questions that was important to us. By writing the questions down before our appointment....we didn't forget to ask the Dr. Hey, as far as the Kegels, one of the guys(who had the surgery before my husband) we talked to told my husband to do them as if training for a marathon. They all regained continence anywhere from 12-30 days after surgery. I'm talking about not having to wear a pad. I've heard they had a few Oops(minor leaks) with coughing, sneezing, and laughing. But those get better with time.

motopedlr
New Member

Date Joined Oct 2005
Total Posts : 3

Posted 10/8/2005 7:35 AM (GMT -7)

Did he feel that the Kegels helped in regard to erections?

KMiyoko
Regular Member

Date Joined Jul 2005
Total Posts : 72

Posted 10/8/2005 9:50 AM (GMT -7)

Yes, I think it makes a difference. But I just recently read that erections are not instant like when a guy gets excited, after the surgery. It takes stimulation to the penis itself. The City of Hope gives their patients Viagra as soon as the cathether comes out to increase the blood flow to the area to help things to heal faster. Two days after the cathether came out we had sex with No erection, but he had was able to have an orgasm. That was 8 days after surgery. At about 3 weeks we had an erection. It did take some working but both partners have to be willing to work at it and adapt, because it is different. I told my husband we would just have to keep practicing until we get it right. The Levitra(Viagra) works, but causes him to have head aches and his heart races. So, we are going to try without the Levitra for a while, or switch back to the Viagra. Our health plan changed the Meds. from Viagra to the Levitra. I don't remember the Viagra causes the same problems. I will be calling the Dr. to check on this. You can write to me at KMiyoko808@yahoo.com for more details on things. By the way how old are you? From what I heard, age and health before surgery also makes a difference on the recovery.

motopedlr
New Member

Date Joined Oct 2005
Total Posts : 3

Posted 10/8/2005 11:09 AM (GMT -7)

I'll be 59 next month and although not athletic do play golf and am in pretty good health. When was your husband's surgery?

KMiyoko
Regular Member

Date Joined Jul 2005
Total Posts : 72

Posted 10/8/2005 9:30 PM (GMT -7)

He had his surgery on August 22nd. He is 43 years old and is physically active, because he is a hay farmer. He also coaches sports for our local High School.

Flopsie
Veteran Member

Date Joined Jun 2005
Total Posts : 1361

Posted 10/15/2005 11:39 AM (GMT -7)

Hi all,
Just wanted to stick my nose in here, my hubby had a radical done Dec. 6th, 2004. His recovery time was minimal although the doc kept him off work for 3 months. For the first 3 months he had no bladder control, did his excersizes faithfully. Then he started having less and less leakage. He had to wear a condom catheter when he went back to work as he could feel the need to go, but could not hold it. We are now 10 months post-op and he has total control. Wears nothing.

He tried the Viagra, Levitra and Cialis with no sucess. The doctor finally put him on a medicine called PAP+. It is injected into the penis with an insulin needle and he says there is no pain, and it works for him.

He is 56 years old and has also always been very active and in good shape.
Oh, The doctor called his procedure "nerve sparing".

Just wanted to share our experience with you.
Good luck to all..Our PSA is still looking GOOD.

flopsie

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Don't walk behind me....I may not lead

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Derek W.
New Member

Date Joined Oct 2005
Total Posts : 3

Posted 10/30/2005 2:40 PM (GMT -7)

Flopsie:
Thanks for the encouraging post. I had a radical prostatectomy on 10/18/05 with catheter out on 10/25/05. So far almost total incontinence. Nighttime is fine, or sitting if I concentrate on squeezing.

These are your words that give some hope: "For the first 3 months he had no bladder control, did his excersizes faithfully. Then he started having less and less leakage."

I am almost 63. How old was your hubby when he had the surgery done?

And great news about the PSA! That is the main event, as they say.

Derek

BobInAZ
New Member

Date Joined Nov 2005
Total Posts : 6

Posted 11/1/2005 11:54 AM (GMT -7)

Keep us posted Derek. Regaining urinary control is now my main objective. I am 46 and am recovering from a very uneventful bilateral nerve-sparing RRP one week ago today, two nights in the hospital with no pain, just boredom. Catheter comes out 11/14, as my Dr. is adamant that three weeks is the most safe course (and stop whining about the inconvenience). After that day, we'll see. Statistically you might still be 'early' in the recovery timeframe...if you are average, you might be a couple of months away from regaining more control. Life is a big Bell Curve, everybody is different. But 92% of us regain control within the first year, and nobody seems to be able to predict whether that will occur on Day 1 or Day 364. I have my bag of Depends ready, and know that I'll be doing Kegel exercises instead of my treadmill for my fitness regimen for awhile.

Flopsie
Veteran Member

Date Joined Jun 2005
Total Posts : 1361

Posted 11/2/2005 1:08 AM (GMT -7)

Hi Derek, my hubby was 56 when he had his surgery, we are now 11 months post-op and total bladder control. BobIn Az, you are correct, every one is different, but in time, I think we will all be free of the depends and such.

My thoughts and prayers are with each and everyone of you.

Don't walk in front of me....I may not follow

Don't walk behind me....I may not lead

Walk beside me..and be my friend...

Albert Carnus

and Lord, put your arm around my shoulder and your hand over my mouth

Help HealingWell.com continue to help others. Donate Today....http://www.healingwell.com/donate/

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Flopsie
Veteran Member

Date Joined Jun 2005
Total Posts : 1361

Posted 11/4/2005 10:33 AM (GMT -7)

Hi Derek and Bob,
Just wondering how your recovery is coming. Are you up and around? Hope all is well with you both.

Thinking of you both,

flopsie

Don't walk in front of me....I may not follow

Don't walk behind me....I may not lead

Walk beside me..and be my friend...

Albert Carnus

and Lord, put your arm around my shoulder and your hand over my mouth

Help HealingWell.com continue to help others. Donate Today....http://www.healingwell.com/donate/

co-moderator for Arthritis and Anxiety/Panic

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philpa
New Member

Date Joined Nov 2005
Total Posts : 2

Posted 11/18/2005 12:15 AM (GMT -7)

Hello Everyone,

I need your help. My husband, a very young 70, has just been diagnosed with prostate cancer. In July he began having problems with bladder dysfunction and that's when the diagnosis was made. He has been self-catherizing since then. What we'd like to know is what procedures, RP, robotic laproscopic surgery or a weaning off the catheter with hormones and then IMRT radiation, others with the same type of problems have chosen and the outcome. Thanks

Sharzey

James in Los Angeles
New Member

Date Joined Nov 2005
Total Posts : 5

Posted 11/26/2005 6:12 PM (GMT -7)

Hello. My names is James. I had a RRP on October 23 with the catheter out in 7 days, Nov 1. I think I am on the same program as Derek. My only sign of progress with continence is more ability now than 4 weeks ago to hold it from a chair or bed to the bathroom by squeezing. I know it's only a month and I'm not whining. But it is discouraging to have otherwise successful surgery and still be leaking and wondering when and if things will correct themselves. I'd like to know of any of you out there who were in the same shape as of a month and what signs of progress you experiened beyond that time. James

James in Los Angeles
New Member

Date Joined Nov 2005
Total Posts : 5

Posted 11/26/2005 6:21 PM (GMT -7)

Philpa -- I think your husband's situation needs a real pro to sort it through. The pre-existing urological conditions seem a bit beyond what most are going through going into a decision about prostate cancer treatment. If he were my best friend, I'd urge him to consult with at least 2 or 3 of the very best surgeons you can connect to. Based on everything I have seen and heard, your consulting docs should include one or two who are very experienced with the robotic, laparascopic procedure, since it has many advantages over traditional surgery when it comes to surgical precision and to various aspects of healing (based on my views of various data).
best of luck to your husband and to you. James

Stephanie_B
Regular Member

Date Joined Nov 2005
Total Posts : 34

Posted 11/28/2005 1:33 PM (GMT -7)

Hi James in LA,

I've been trying to read up as much as I can on the Internet, but I can only do so much at a time. After a while, the whole thing just overwhelms me, and I start to cry.

So if I could lean on you --- You said: "... robotic, laparascopic procedure, has many advantages over traditional surgery when it comes to surgical precision and to various aspects of healing".

You think so? Robotic just sounds scary... (Ha - what doesn't right!) I know that my husband is already leaning towards laparascopic but we haven't figured out regular vs robotic yet.

PS. Having gone through child birth and being quite familiar with Kegel exercices, I'd say: Do 'em any time you can remember to do them. I've made a mental association between driving my car and doing them. Good luck!

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