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Total Incontinence After Prostatectomy

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Posted 6/16/2006 3:33 PM (GMT 0)
LW,

The foam cup is held under the penis. The idea is to reteach the body how to hold urine...the cup catches the urine becasue obviously this isn't going to be a dry excersise. I had given Stan's idea to a dear friend who had his cath out one week ago and today he's back at work wearing a light pad. He too dripped like a leaky faucet but on about day 4 his suddenly, greatly improved. My guess is he finally found the right muscles he needed to strengthen....which is the idea behind the cup method. Any cup will do. Foam you can just throw away is all.

The goal is to teach himself just as though he had to learn all over again to "hold it" as it becomes natural, just as it does when we're kids. The right muscles are as though he's sucking the perineium from the floor of his pelvis...exactly like we (women) do. No butt muscles should be sucked up with it nor the scrotum...only the perineium thus the bladder. He'll know he hit it because his stream shold sloow down and hopefully even stop! Holding the urine is a trick but that's the goal. Less and less should be in that cup. The bladder does have a tendency to feel fuller exactly the same way women who do kegels experience. Holding for a count of 10 then letting go...this pattern goes on for a total of two hours a day and done while walking around or standing. Of course it may be necessary to relax if he gets tired or stop until later. Each and every time he goes the restroom to go pee, he needs to practice... stop-hold a few seconds and start again a couple of times just to get that muscle trained to take over.

My friend did this spit into 3-4 different times each day until he had figured out how to hold his own urine. Didn't take him long after he finally figured out the goal was to reteach his body to do something that's been normal for over 50 years. Haven't talked to him in 3 days to see how he is but on Tuesday he was doing good. Hope it works for your hubby too.
Have a safe weekend, Swim
Posted 6/17/2006 8:03 PM (GMT 0)

Thank you for your replies and encouragement Glen, Jim, & Swim.   Still dripping like crazy but he's working hard with the kegels. He has found that if he lays flat for a little while he is able to accumulate a small amount of urine in the bladder to work with. If he's up and walking however, the constant dripping leaves the bladder empty.  It's helpful to hear how some of you have managed and what your first signs of success were. Thank you for sharing.

L.W.

Posted 8/31/2006 12:27 AM (GMT 0)
lychee
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Posted 1/6/2006 10:04 PM (GMT -6) Quote This Postalert An Admin about This Post.
I just noted that my last post was 9/26/05, I was at full flow , no control, and unable to hold any fluid in my bladder , that was 4 month after the operation. At that time I made some changes to my recovery effort ,( 1 stopped all Kegal’s , 2.started a Vacuum therapy 3 tried 20 mg Cialis) and the last two months I have made great progress, some days 2 or 3 pads. I have now started doing kegal again . My major problem at this time is stress, lifting, climbing ect. I think many Dr. over state there IC and ED time rates, If you look at study’s from the VA it show a different story.

Hi Lychee:
I am 10 months out from my laparoscopic radical prostatectomy. The improvements in urinary controll seemed to have stopped. I still have to wear pads all day. I'm OK sitting down but when out and about I have trouble.
Could you please explain what vacuum therapy is?
Thanks, CMA
Posted 10/12/2006 1:20 AM (GMT 0)
I had nerve-sparing prostectomy surgery 9 months ago, and unfortunately still have incontinence.

I'm wondering if anyone out there regained it at such a late date or later, since by now I am discouraged. There was some improvement after about 2 months, but little after. In 2 more months I will see an incontinence specialist who will begin tests for possible surgery.

BUT....for all those with incontinence at any stage, I HIGHLY RECOMMEND checking out the Afex Incontinence system. My own doctors didn't know about it. A friend just happened to see it in a catalogue. It lets me do almost everything I would normally do. Quite simply, it's a "receptacle" that your penis just sits in, held in place by tight underwear and connected to a small bag directly underneath. No tubes.No big bag down your leg. Just look up Afex Incontinence on the internet and order directly.

I tried everything before this..catheters that at times fell off, pads that left me irritated, etc and nothing worked as well.I don't work for this company, but probably should. It seems to be relatively new. The only slight problem is if you bend, you might "pop out," so you just re-insert yourself.  Use some vaseline around the opening. And the receptacle has to be pointing down slightly.

Posted 10/21/2006 4:19 AM (GMT 0)
Hi Everybody

I had radical Prostatectomy on June 24, 2005 and have had a real battle with Incontinence. I've done so many kegels that I lost count.
I too use "Depends pads for Men" I have good days and bad. I find when I play golf, I have to change my pad after 6 holes. I'm okay sitting but as soon as I put any stress on my body, I leak. I have to watch my fluid intake and alcohol is acomplete diretic. At night I'm pretty good. I get up about 3 am and my pad is usually fairly dry in the morning. I go to my urologist in about 3 weeks for my checkup. Do I have any hope of beating this problem or am I resigned to pad wearing for the duration? I'm now 66 yrs of age and was almost 65 when I had my operation. Thanks for listening!
Signed: Discouraged covsky
Posted 10/21/2006 9:57 AM (GMT 0)
Dear covsky:

I noticed you signed your username preceded by "discouraged". Never do that again. Here's why:

I have a very good friend about your age who had incontinence similar to yours for about two years. Like yourself, there was improvement each month until he finally reached the point where, during stressful moments, he DID NOT leak. It just took him a little bit longer to reach this point than most. But he did get there!

I am going to end this post with a quote from the discharge information provided by a renowned urologist at Johns Hopkins b/c I don't know of a more authoritative source:

"Problems with urinary control are common once the catheter is removed. Do not get discouraged....Everyone is different and, for this reason, I cannot predict when you will be dry....Again, I emphasize that urinary control takes time. Do not get discouraged."
Posted 10/21/2006 12:13 PM (GMT 0)

Stephanie_B

Traditional V Robotic

Robotic has SHORT TERM advantages.

Ability and experience of the surgeon is MOST important, regardless of  the method used.

Select your doctor very careully as your choice  will make a huge difference to your LONG TERM outcome which you have to live with.

John

Posted 11/2/2006 12:09 PM (GMT 0)
To all of you who are suffering from severe incontinence...
For several weeks after surgery I just dripped continuously. I couldn't hold any urine at all as it just leaked out as fast as my body made the stuff.
I got a huge amount of hope and encouragement from the posts on this site, so thanks to you all.
Anyway, suddenly, I'm now starting to make some real progress. I think that the first glimmer of control occurred after I stopped the Kegels for 24 hours.
I tried to relax in a hot bath at least once a day. I spent hours kneeling and standing over a bucket (my poor wife, how did/does she cope with all of this?). I tried to get in touch with my insides through the sensitivity of my penis - stroked it, poured cold water over it, tried to have an orgasm (not easy with it flopping around like a dead worm!).
Anyhow hang in there, it seems like initial progress really is one step forward and six steps back, with any gains almost imperceptible. I think, to start with, it's 99% will power and 1% muscle power.
God bless to you all, and your loved ones.
Posted 11/2/2006 1:27 PM (GMT 0)

Found out on Tuesday that come Dec 13th I will be finding out about how my control will be.  Donna and I saw the Urologist and then the surgeon that will be doing the DaVinci.  Both bostered our confidence in what we already knew needed to be done.

In preparation I am scheduled on Nov 16th to see a physical therapist at the women's clinic of Methodist Hospital in Omaha NE.  She will be training me on pelvic floor exercises to do in preparation.  Interesting.  Guess this is to help me with control after the surgery.

Has anyone else experience this type of training?  Will let the group know what I am learning and how it is proceeding.

Max

Posted 11/2/2006 1:53 PM (GMT 0)

Hi Mac & Donna,

Nope, but the exercises (Kegels) are very important to your recovery. If a therapist teaches you the proper technique it will be well worth the effort. Good luck, and keep us posted when you can.

Glen

Posted 11/2/2006 3:57 PM (GMT 0)
Interesting..a physical therapist doing what could take a Dr's office 5 minutes to teach. That is certainly one way to replace some of the outsourcing :>)
Posted 11/2/2006 5:38 PM (GMT 0)

As I sit here reading and leaking, I am encouraged to hear that regaining control will take time. It's amazing how this site makes you not feel "all alone" I have been doing pretty good at night after I lie down. I wake up somewhat dry and going to the bathroon to pee on my wown. But when I'm up and around it's a different trip. I don't feel anything happening but after an hour, I'm ready for a change. Of course I move around quite a bit and I know that contributes to the leakage. I guess all I can do right now is do my kegels and keep looking for the perfect pad. What a mess!

Birdland

Posted 11/2/2006 6:08 PM (GMT 0)
We just got back from a post da Vinci and had a discussion about the leakage. Husb. was perfectly dry for two weeks post catheter removal. Then as activity levels increased so did the leaking begin. Lying and sitting are OK. Can get up and make it to bathroom OK. Just the activity gets it all started and then there's no control.

Doctor has tested for bacterial infection and scar tissue - there is none. Husb. took Detrol LA for 30 days with no improvement. Now, he recommends just waiting to see if it gets better. While it is no fun, we recognize that everyone improves at a different rate. Does not suggest any surgical measures until at least after 12 months if everything "resolves on its own." From all my forum reading, one of the magic numbers seems to be 4 months. The doctor has said 6-9 months. For some, we have to realize it could be longer. Not a pretty thought at all, but many of us are in this boat, unfortunately.

Doctor also suggested 2-3 different types of surgeries that could improve the control. One was a "saddle" to support the bladder. I honestly can't remember the other two and, hopefully, won't have to deal with that.

My thoughts are to keep up the faith and believe that it will get better. At a certain point, it won't hurt to look into surgical remedies.
Posted 11/3/2006 2:43 PM (GMT 0)
Hey Green,



Yes… it’s only been 3 months…. So your timetable must be one that will go longer to regain continence. And this is okay but very draining I’m sure for both of you.



The thoughts that are going through my mind are? Is your hubby drinking a lot of caffeine? He is drinking excessive amounts of fluids? Continuing to do his kegels? All of these questions will have an affect on regaining continence in my opinion.



Here’s my opinion for what it is worth…



There is a Chapter in Dr. Walsh’s book that talks directly about stress incontinence and urgency incontinence. Bottom of page 247



Chapter 8….. Long-Term Issues: Urinary Continence and Sexual Potency



Our goal is to find out as much as we can about a specific concern and this chapter makes me wonder if it might help your honey. Not everyone likes this book but I trust it explicitly and that’s why we have such a wonderful group. We are allowed to share our feelings. The individual has a right to know and can use or not use the information provided.



SO ~ it might be worth a trip to the bookstore to check out Chapter 8



I’m not sure I’d just sit and wait….. at this point in time. Agan…. Just my own personal opinion.



Our thoughts will continue to be with you and if I come across anything else I won’t hesitate to share.



Keeping you close in my heart!! In Friendship from Lee & her Buddy
Posted 11/3/2006 3:37 PM (GMT 0)
Hi, Mama B.

(Is "draining" an operative word, here?) Yes, it is draining, frustrating, all of that.

Yes, we've done kegels religiously since a month before surgery (except for Foley time).
Cut back on liquids and, of course, when nothing's there, nothing comes out. However, that's not good, either.

We think this is still just a healing period and will resolve itself, not as quickly as some, but well within the norm at this point. Nothing really abnormal - since that has all been ruled out.

MinPin is curled up in front of his own space heater at my feet - snoozing away! Ah, the carefree joys of a dog's life, huh?

Thanks so much, MamaB - where would we all be without our bluebird?
Posted 11/3/2006 4:05 PM (GMT 0)
Hey Green....

Dah.... I didn't even key into that word!!!!
Sometimes I think maybe I write tooo much but then again..... if the fingers type on their own it must mean something smile

Here's just a little of what I was reading...... again... just food for thought..... and if you or someone else wants to try this.... please don't do this until you read everything on this subject in his book..... again just reaching for some answers..... It's only been 3 months so waiting may be the best but came across this and decided to post it.... All of the drugs have side effects…. And if you have high blood pressure don't do this!!!

Check with your doctor if it is something you want to try.......


*Excerpts from Chaper Chapter 8…Long-Term Issues: Urinary Continence and Sexual Potency
If you have stress incontinence…….
Decongestants, used to treat a stuffy nose and cold symptoms, work by contracting smooth muscles. Thus—if you do not have high blood pressure—you may benefit from taking a short-acting decongestant such as pseudoephedrine, or a long-acting agent combined with an antihistamine. Another drug, called imipramine, has a two-pronged approach. It relaxes the muscle in the bladder, and also tightens the muscle tone of the external sphincter.

But in my opinion may be worth the try. Again…. Looking for answers is what we’re after and maybe this is something to look into. I mean who hasn’t taken a decongestant??

Hey SJC and Swimom…. Anything to this??? That you’ve heard about?

Chirp,....Chirp.... Mama B

p.s. Tell MinPin ...I have my little heater warming my feathers also.... ahhhh we could learn so much from the unconditional love from our pets.... xo



** edited to add.... "Check with your doctor before trying anything listed above"... smile
Posted 11/4/2006 9:14 PM (GMT 0)

12/4/06

There have been a few posts about how difficult the incontinence problem is.

PLEASE GO BACK TO THE SECOND PART OF MY POST ON 10/11.It will make all the difference in the world to you!!!  I have had incontinence now for 10 months, and probably will wind up with surgery. BUT, just check out the AFEX system (type in Afex incontinence) I can't begin to tell you how good it is. No pads! It lets you do just about anything, and doctors don't seem to know about it, since it is new.

Very simply, you wear "tight" underwear which holds a "recepticle" in place, which your penis sits loosely  in. The recepticle connects to a SMALL bag which is right outside the underwear, between your legs. NO LONG TUBES down your leg. It's comfortable. You have to really see the pictures on the website. Again, I think I'd be in an institution by now, after 10 months, without this. Use a little vaseline around the rim, and empty the bag with the valve at the bottom as needed.You just need a few underwears, bags, and the recepticle.

And again, I'd appreciate anyone who regained continence after about a year letting me know, since I'm not looking forward to more surgery

Good luck!!!

Posted 11/4/2006 9:46 PM (GMT 0)

Lee:

I don't know too much about the decongestants; however, if Dr. Walsh, the most renowned Urologist in the US, says it might help, I have no reason to doubt his opinion.  I read his book, followed all of his suggestions, and have absolutely no regrets.  So, if he says give it a try, I say give it a try!  Don't know of a more authoritative source.

Posted 11/4/2006 11:20 PM (GMT 0)
Hey SJC,
Thank you for your input...... We agree 100% with your posting.... but did go in an edit the my post a little so no one would try this without reading the section in the book.... even if they swing by a book store. And check with their doctor first.
smile Take care!
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