Re: Post Surgery- Incontinence Experience Feedback?

October 23, 2011

What you are experiencing is pretty normal

post op. It took me about 6 months to be fully continent again.

Then the radiation messed that up, but that is another story. Besides strengthen

the kegels you also need to start training your body to automatically contract

them before a leakage event occurs. The most obvious is before you sneeze

or blow your nose you will need to pull in the kegels. It will take a lot

of trial and error before it starts to turn automatic and you will stay

dry. I did not like the mens diapers. Too much bulk and I didn’t

need that much protection. I found briefs with a pad to be much more

comfortable and indiscrete. I found two different brands,

Tena (available at CVS) is thinner and not as much bulk as the ones in the

green packages (sorry I forgot their name but they are everywhere).

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of DonM

Sent: Sunday, October 23, 2011

9:50 PM

To: ProstateCancerSupport

Subject:

Post Surgery- Incontinence Experience Feedback?

Hello Everyone,

This is Don M. Some may remember my story to date. I'm the 45 year old guy who

had protons at LLUMC in 2009. Unfortunate my treatment was unsuccessfull. I had

an endo recto MRI and with those images had a guided biopsy to the suspicious

areas at National Institute of Health (NIH). 8 cores came back positive out of

18. All my other scans are negative for signes of metastatic cancer. Had a

radical prostatectomy on October 6th performed by Dr. Pinto and his team at

NIH, surgery lasted about 7 hrs. Wore my catheter for 14 days

and just had it removed 2 days ago. I'm presently experiencing

leakage/dripping. The best was to describe it's like a leaky faucet. It's more

profound when walking/standing. When sitting or lying down it's not so bad. I'm

presently wearing men pads. Doing kegels and doing air squats in the shower .

Typically I do about 10 sets of 10 to 12 reps of kegels at 5 to 10 seconds each

and about 50 airsquats in the shower 2 x daily. Next week i'm going to venture

out and starting my running program again. I think if I wear a mens

diaper/undergarment under my running shorts will not be noticeable. I cranked

out some pushups and didn't feel any pain which was reassuring. Also, I have a

large bathroom and was thinking of bringing in some gym equipment since i'm a

little embarassed to go to the gym for the fear of a noticeable accident. Does

anyone have any recommendations they can suggest? I understand via my doctor

and pretty much everyone I was going to have incontinence issues for a few

weeks. I'm praying that my incontinence will subside and I won't be somoneone

with chronic issues long term. I'm 2 days out after the removal of my catheter

and again I dribble like a leaky faucet, when I do a kegel it does stop in most

cases. Is this normal protocol for most guys 16 days post surgery and 2 days

after catheter removal? Any input concerning this issue will be appreciated.

Trying to set some goals and again any other type of exercises that worked for

someone, please let me know.

Thanks Everyone,

Don M.

October 23, 2011

What you are going through is very similar to what I experienced. It will get better. Be patient. My only suggestion is not to try and do too much too quickly. You have just had a major surgery. Things are still healing for you. Don't push yourself too hard and tear something loose that will cause you to continue to leak. Give yourself some time.

Coy, MI

Hello Everyone,

This is Don M. Some may remember my story to date. I'm the 45 year old guy who had protons at LLUMC in 2009. Unfortunate my treatment was unsuccessfull. I had an endo recto MRI and with those images had a guided biopsy to the suspicious areas at National Institute of Health (NIH). 8 cores came back positive out of 18. All my other scans are negative for signes of metastatic cancer. Had a radical prostatectomy on October 6th performed by Dr. Pinto and his team at NIH, surgery lasted about 7 hrs. Wore my catheter for 14 days

and just had it removed 2 days ago. I'm presently experiencing leakage/dripping. The best was to describe it's like a leaky faucet. It's more profound when walking/standing. When sitting or lying down it's not so bad. I'm presently wearing men pads. Doing kegels and doing air squats in the shower . Typically I do about 10 sets of 10 to 12 reps of kegels at 5 to 10 seconds each and about 50 airsquats in the shower 2 x daily. Next week i'm going to venture out and starting my running program again. I think if I wear a mens diaper/undergarment under my running shorts will not be noticeable. I cranked out some pushups and didn't feel any pain which was reassuring. Also, I have a large bathroom and was thinking of bringing in some gym equipment since i'm a little embarassed to go to the gym for the fear of a noticeable accident. Does anyone have any recommendations they can suggest? I understand via my doctor and pretty much everyone I was going to have incontinence issues for a few weeks. I'm praying that my incontinence will subside and I won't be somoneone with chronic issues long term. I'm 2 days out after the removal of my catheter and again I dribble like a leaky faucet, when I do a kegel it does stop in most cases. Is this normal protocol for most guys 16 days post surgery and 2 days after catheter removal? Any input concerning this issue will be appreciated. Trying to set some goals and again any other type of exercises that worked for someone, please let me know.

Thanks Everyone,

Don M.

--

G. Coy

shootingcpa@...

" History does not entrust the care of freedom

to the weak or timid. " ... Dwight D. Eisenhower

October 23, 2011

Maybe yours may be slightly more severe than average, but using the male pads will be effective for now. It took me some six months to be confident enough to fully dispense with the pads. The Walmart store brand of these are quite adequate. If you do not see any improvement in some two months, you need to check with your Drs., but do not expect the improvement to be complete for some six months. Louis. . . To: ProstateCancerSupport Sent: Sunday, October 23, 2011 9:49 PMSubject: Post Surgery- Incontinence Experience Feedback?

Hello Everyone,

This is Don M. Some may remember my story to date. I'm the 45 year old guy who had protons at LLUMC in 2009. Unfortunate my treatment was unsuccessfull. I had an endo recto MRI and with those images had a guided biopsy to the suspicious areas at National Institute of Health (NIH). 8 cores came back positive out of 18. All my other scans are negative for signes of metastatic cancer. Had a radical prostatectomy on October 6th performed by Dr. Pinto and his team at NIH, surgery lasted about 7 hrs. Wore my catheter for 14 days

and just had it removed 2 days ago. I'm presently experiencing leakage/dripping. The best was to describe it's like a leaky faucet. It's more profound when walking/standing. When sitting or lying down it's not so bad. I'm presently wearing men pads. Doing kegels and doing air squats in the shower . Typically I do about 10 sets of 10 to 12 reps of kegels at 5 to 10 seconds each and about 50 airsquats in the shower 2 x daily. Next week i'm going to venture out and starting my running program again. I think if I wear a mens diaper/undergarment under my running shorts will not be noticeable. I cranked out some pushups and didn't feel any pain which was reassuring. Also, I have a large bathroom and was thinking of bringing in some gym equipment since i'm a little embarassed to go to the gym for the fear of a noticeable accident. Does anyone have any recommendations they can suggest? I understand via my doctor and pretty much everyone I was

going to have incontinence issues for a few weeks. I'm praying that my incontinence will subside and I won't be somoneone with chronic issues long term. I'm 2 days out after the removal of my catheter and again I dribble like a leaky faucet, when I do a kegel it does stop in most cases. Is this normal protocol for most guys 16 days post surgery and 2 days after catheter removal? Any input concerning this issue will be appreciated. Trying to set some goals and again any other type of exercises that worked for someone, please let me know.

Thanks Everyone,

Don M.

October 23, 2011

Hello Don M. After your proton beam therapy in 2009, what was your diet? Did you receive any instructions on foods to eat, or foods to avoid? And drinks to eat or avoid?. What was your diet after proton beam therapy? Did you check your dosages you received? Did you get all the dosages you were scheduled to receive? What was the dosage you wwere to receive, and how many days of treatment at what dosage did you receive? Regards, T t Maybe yours may be slightly more severe than average, but using the male pads will be effective for now. It took me some six months to be confident enough to fully dispense with the pads. The Walmart store brand of these are quite adequate. If you do not see any improvement in some two months, you need to check with your Drs., but do not expect the improvement to be complete for some six months. Louis. . . To: ProstateCancerSupport Sent: Sunday, October 23, 2011 9:49 PMSubject: Post Surgery- Incontinence Experience Feedback? Hello Everyone,This is Don M. Some may remember my story to date. I'm the 45 year old guy who had protons at LLUMC in 2009. Unfortunate my treatment was unsuccessfull. I had an endo recto MRI and with those images had a guided biopsy to the suspicious areas at National Institute of Health (NIH). 8 cores came back positive out of 18. All my other scans are negative for signes of metastatic cancer. Had a radical prostatectomy on October 6th performed by Dr. Pinto and his team at NIH, surgery lasted about 7 hrs. Wore my catheter for 14 days and just had it removed 2 days ago. I'm presently experiencing leakage/dripping. The best was to describe it's like a leaky faucet. It's more profound when walking/standing. When sitting or lying down it's not so bad. I'm presently wearing men pads. Doing kegels and doing air squats in the shower . Typically I do about 10 sets of 10 to 12 reps of kegels at 5 to 10 seconds each and about 50 airsquats in the shower 2 x daily. Next week i'm going to venture out and starting my running program again. I think if I wear a mens diaper/undergarment under my running shorts will not be noticeable. I cranked out some pushups and didn't feel any pain which was reassuring. Also, I have a large bathroom and was thinking of bringing in some gym equipment since i'm a little embarassed to go to the gym for the fear of a noticeable accident. Does anyone have any recommendations they can suggest? I understand via my doctor and pretty much everyone I was going to have incontinence issues for a few weeks. I'm praying that my incontinence will subside and I won't be somoneone with chronic issues long term. I'm 2 days out after the removal of my catheter and again I dribble like a leaky faucet, when I do a kegel it does stop in most cases. Is this normal protocol for most guys 16 days post surgery and 2 days after catheter removal? Any input concerning this issue will be appreciated. Trying to set some goals and again any other type of exercises that worked for someone, please let me know.Thanks Everyone,Don M.

October 23, 2011

Check with your doctor, but I would not recommend running for quite a while. After any abdominal surgery, you want to put as little stress on the healing tissues as possible -- which is why youÂ shouldÂ get up every hour or so after sitting in a chair and go lie down, taking the pressure off your pelvic organs and muscles. In the case of radical prostatectomy, the most delicate part that's healing is the anastomosis: the place where the surgeon stitched your urethra to your bladder after removing the prostate, which used to be in the middle. You really don't want to jeopardize that by jiggling everything up and down. :-) If your gym has an elliptical trainer, you might try that instead of a treadmill, since it's a smooth, no-impact exercise.

I had my RP two weeks ago, and they removed the catheter 9 days after surgery. Luckily for me, and/or due to my surgeon's amazing skill, incontinence has not been a problem, although I'll wear pads inside my briefs for a while, until I lose the fear that I'm going to leak. I haven't been back to the office yet (I can work online from home) because of the need to lie down often.

--Phil

October 24, 2011

Don, based on my experience, you are totally normal two days after catheter removal. It should get better in the weeks ahead, but do keep up with the kegels. I did mine several times a day for three months. At the end of that time I was able to dispense with any protection, working down from men's pads to very light women's pads before then. Now, almost 21 months after surgery, my bladder control is absolutely normal -- no leakage at all, even while running, cycling, lifting etc. It's a non isssue. I hope you get to where I am.

Mike

Subject: Post Surgery- Incontinence Experience Feedback?To: ProstateCancerSupport Date: Sunday, October 23, 2011, 9:49 PM

Hello Everyone,This is Don M. Some may remember my story to date. I'm the 45 year old guy who had protons at LLUMC in 2009. Unfortunate my treatment was unsuccessfull. I had an endo recto MRI and with those images had a guided biopsy to the suspicious areas at National Institute of Health (NIH). 8 cores came back positive out of 18. All my other scans are negative for signes of metastatic cancer. Had a radical prostatectomy on October 6th performed by Dr. Pinto and his team at NIH, surgery lasted about 7 hrs. Wore my catheter for 14 days and just had it removed 2 days ago. I'm presently experiencing leakage/dripping. The best was to describe it's like a leaky faucet. It's more profound when walking/standing. When sitting or lying down it's not so bad. I'm presently wearing men pads. Doing kegels and doing air squats in the shower

. Typically I do about 10 sets of 10 to 12 reps of kegels at 5 to 10 seconds each and about 50 airsquats in the shower 2 x daily. Next week i'm going to venture out and starting my running program again. I think if I wear a mens diaper/undergarment under my running shorts will not be noticeable. I cranked out some pushups and didn't feel any pain which was reassuring. Also, I have a large bathroom and was thinking of bringing in some gym equipment since i'm a little embarassed to go to the gym for the fear of a noticeable accident. Does anyone have any recommendations they can suggest? I understand via my doctor and pretty much everyone I was going to have incontinence issues for a few weeks. I'm praying that my incontinence will subside and I won't be somoneone with chronic issues long term. I'm 2 days out after the removal of my catheter and again I dribble like a leaky faucet, when I

do a kegel it does stop in most cases. Is this normal protocol for most guys 16 days post surgery and 2 days after catheter removal? Any input concerning this issue will be appreciated. Trying to set some goals and again any other type of exercises that worked for someone, please let me know.Thanks Everyone,Don M.------------------------------------There are just two rules for this group 1 No Spam 2 Be kind to othersPlease recognise that Prostate Cancerhas different guises and needs different levels of treatment and in some cases no treatment at all. Some men even with all options offered chose radical options that you would not choose. We only ask that people be informed before choice is made, we cannot and should not tell other members what to do, other than look at other options. Try to delete old material that is no longer applying when clicking replyTry to change

the title if the content requires it

October 24, 2011

Hello ,

Prior to be diagnosed in 2009 and after I felt I ate very healthy. I've always

been physically fit and very active running, gym, hiking, skiing etc.. over the

years. From about 25ish to 35ish I was even a vegetarian but I did eat alot of

dairy products (alot). After being diagnosed and treated I cut out dairy and

went on a more paleo diet. I read the China Study and other information about

cultures with low rates of cancer due to possibly there diets so I started

modeling off of that. I'm still presently on a paleo diet but substitute the

red meat with fish/seafood (I do cheat occasionally and eat some grains). At

Loma which you may already know is a 7th Day Adventis which they believe

in a vegetarian diet. However, I don't recall my doctor or PA ever talking

about nutrition in detail. I think they had a nutritionist you could sign up

for but my diet was already very good so I didn't. I have to be honest with

myself, I think in my personal situation genetics played a huge role since my

dad and grandfather both had PCa. However, I do believe what you put in your

mouth and fitness plays a huge role in your health. I mean just look around, we

have an epidemic going on with obesity, diabetes type II, etc... not only with

adults but with children which is very sad.

Yes, I received all my 45 treatments of proton radiation (no photons) at 81gy at

LLUMC. I'm still processing my feelings. I know alot of guys had very

successful treatment using protons. What baffles me is after my proton

treatment they were still able 2 years later find cancer within my prostate so I

guess the protons didn't destroy all within the prostate. That was the reason

having surgery as a salvage treatment because we still felt it was localized ( &

praying).

Best,

Don M.

October 24, 2011

Don,

It should get better with time. My surgery was June 20 ( four months) and I still have some minor leakage which is getting less with time. I'm down to using half a pad and it sometimes gets damp when I am doing strenuous stuff. I walk each day, do a lot of manual outside work and ballroom dance, sometimes for several hours. No embarrassing problems ever. Hang in there it will get better.

Larry

Don, based on my experience, you are totally normal two days after catheter removal. It should get better in the weeks ahead, but do keep up with the kegels. I did mine several times a day for three months. At the end of that time I was able to dispense with any protection, working down from men's pads to very light women's pads before then. Now, almost 21 months after surgery, my bladder control is absolutely normal -- no leakage at all, even while running, cycling, lifting etc. It's a non isssue. I hope you get to where I am.

Mike

Subject: Post Surgery- Incontinence Experience Feedback?To: ProstateCancerSupport Date: Sunday, October 23, 2011, 9:49 PM

Hello Everyone,This is Don M. Some may remember my story to date. I'm the 45 year old guy who had protons at LLUMC in 2009. Unfortunate my treatment was unsuccessfull. I had an endo recto MRI and with those images had a guided biopsy to the suspicious areas at National Institute of Health (NIH). 8 cores came back positive out of 18. All my other scans are negative for signes of metastatic cancer. Had a radical prostatectomy on October 6th performed by Dr. Pinto and his team at NIH, surgery lasted about 7 hrs. Wore my catheter for 14 days and just had it removed 2 days ago. I'm presently experiencing leakage/dripping. The best was to describe it's like a leaky faucet. It's more profound when walking/standing. When sitting or lying down it's not so bad. I'm presently wearing men pads. Doing kegels and doing air squats in the shower . Typically I do about 10 sets of 10 to 12 reps of kegels at 5 to 10 seconds each and about 50 airsquats in the shower 2 x daily. Next week i'm going to venture out and starting my running program again. I think if I wear a mens diaper/undergarment under my running shorts will not be noticeable. I cranked out some pushups and didn't feel any pain which was reassuring. Also, I have a large bathroom and was thinking of bringing in some gym equipment since i'm a little embarassed to go to the gym for the fear of a noticeable accident. Does anyone have any recommendations they can suggest? I understand via my doctor and pretty much everyone I was going to have incontinence issues for a few weeks. I'm praying that my incontinence will subside and I won't be somoneone with chronic issues long term. I'm 2 days out after the removal of my catheter and again I dribble like a leaky faucet, when I do a kegel it does stop in most cases. Is this normal protocol for most guys 16 days post surgery and 2 days after catheter removal? Any input concerning this issue will be appreciated. Trying to set some goals and again any other type of exercises that worked for someone, please let me know.Thanks Everyone,Don M.------------------------------------There are just two rules for this group 1 No Spam 2 Be kind to othersPlease recognise that Prostate Cancerhas different guises and needs different levels of treatment and in some cases no treatment at all. Some men even with all options offered chose radical options that you would not choose. We only ask that people be informed before choice is made, we cannot and should not tell other members what to do, other than look at other options. Try to delete old material that is no longer applying when clicking replyTry to change the title if the content requires it

October 24, 2011

Thank you and everyone for responding to my post. Very good feedback and it's

appreciated.

Thanks Guys,

Don M.

>

> Subject: Post Surgery- Incontinence Experience

> Feedback?

> To: ProstateCancerSupport

> Date: Sunday, October 23, 2011, 9:49 PM

>

> Hello Everyone,

>

> This is Don M. Some may remember my story to date. I'm the 45 year old

> guy who had protons at LLUMC in 2009. Unfortunate my treatment was

> unsuccessfull. I had an endo recto MRI and with those images had a guided

biopsy

> to the suspicious areas at National Institute of Health (NIH). 8 cores

> came back positive out of 18. All my other scans are negative for signes of

> metastatic cancer. Had a radical prostatectomy on October 6th performed by

> Dr. Pinto and his team at NIH, surgery lasted about 7 hrs. Wore my

> catheter for 14 days

> and just had it removed 2 days ago. I'm presently experiencing

> leakage/dripping. The best was to describe it's like a leaky faucet. It's

more

> profound when walking/standing. When sitting or lying down it's not so bad.

> I'm presently wearing men pads. Doing kegels and doing air squats in the

> shower . Typically I do about 10 sets of 10 to 12 reps of kegels at 5 to

> 10 seconds each and about 50 airsquats in the shower 2 x daily. Next week

> i'm going to venture out and starting my running program again. I think if

> I wear a mens diaper/undergarment under my running shorts will not be

> noticeable. I cranked out some pushups and didn't feel any pain which was

> reassuring. Also, I have a large bathroom and was thinking of bringing in

> some gym equipment since i'm a little embarassed to go to the gym for the

fear

> of a noticeable accident. Does anyone have any recommendations they can

> suggest? I understand via my doctor and pretty much everyone I was going

> to have incontinence issues for a few weeks. I'm praying that my

> incontinence will subside and I won't be somoneone with chronic issues long

term.

> I'm 2 days out after the removal of my catheter and again I dribble like a

> leaky faucet, when I do a kegel it does stop in most cases. Is this normal

> protocol for most guys 16 days post surgery and 2 days after catheter

> removal? Any input concerning this issue will be appreciated. Trying to set

> some goals and again any other type of exercises that worked for someone,

> please let me know.

>

> Thanks Everyone,

>

> Don M.

>

> ------------------------------------

>

> There are just two rules for this group

> 1 No Spam

> 2 Be kind to others

>

> Please recognise that Prostate Cancerhas different guises and needs

> different levels of treatment and in some cases no treatment at all. Some men

> even with all options offered chose radical options that you would not

choose.

> We only ask that people be informed before choice is made, we cannot and

> should not tell other members what to do, other than look at other options.

>

> Try to delete old material that is no longer applying when clicking reply

> Try to change the title if the content requires it Yahoo! Groups Links

>

> (Yahoo! ID required)

>

> _ProstateCancerSupport-fullfeatured _

>

(http://us.mc807.mail.yahoo.com/mc/compose?to=ProstateCancerSupport-fullfeatured\

@yahoog roups.com)

>

October 24, 2011

Don,

I would like to reiterate what Coy and Phil Hunter said about not

overdoing the exercise. Surgery inflicts serious injuries on internal tissues.

Parts of your body were cut out, including parts that had already been injured

once by radiation. Don't be fooled by the fact that you can't see the injuries.

They're there. If you rip something that isn't fully healed it will cause you

many more problems than if you are patient. I think you should consult your

doctor about when and how to resume exercise.

I'm sorry about the protons not working. It's hard to know why a treatment

works for some people and not for others. I wish you the best of luck with your

salvage surgery.

Alan

October 24, 2011

Thanks Alan,

Yes, I agree with all the feedback. Patience is the key to recovery. I'm

definately don't want to do anything that may compromise my surgeons work. I'll

speak w/him and get a better timeline and base fitness goals per his

instructions.

Thanks Everyone,

Don M.

>

> Don,

>

> I would like to reiterate what Coy and Phil Hunter said about not

overdoing the exercise. Surgery inflicts serious injuries on internal tissues.

Parts of your body were cut out, including parts that had already been injured

once by radiation. Don't be fooled by the fact that you can't see the injuries.

They're there. If you rip something that isn't fully healed it will cause you

many more problems than if you are patient. I think you should consult your

doctor about when and how to resume exercise.

>

> I'm sorry about the protons not working. It's hard to know why a treatment

works for some people and not for others. I wish you the best of luck with your

salvage surgery.

>

> Alan

>

October 25, 2011

--

Nothing you're going through is unusual, unfortunately.

1. If your gym permits you to wear long pants, get a " Texas catheter " (a condom

catheter) and a small leg bag. Avoid the " self-adhesive " condom catheters --

they're painful to remove.

Use two wraps of 3M " Coban " tape, 1 " wide, around the top of the catheter, to

hold it onto your penis. [That tape is very stretchy, sticks to itself well,

but has low " tack " to skin. Vets use it a lot to keep dressings in place.]

With that setup, you can exercise as hard as you want, leak as much as you want,

and nobody else will care.

2. My physiotherapist says that increasing Kegels beyond 100 per day doesn't

give any additional benefit. You're already close to that level, I think.

[OTOH, somebody in my support group does 250 Kegels daily -- he doesn't leak at

all, ever.]

3. Your leakage will probably stop in a month or two or three. DO NOT STOP

KEGEL EXERCISES WHEN THAT HAPPENS! I speak from bitter experience.

4. " I'm 2 days out after the removal of my catheter and again I dribble like a

leaky faucet, when I do a kegel it does stop in most cases. "

So your muscles are strong enough to stop the flow, but your brain hasn't

learned to use them most effectively. That will come, with time and practice.

You'll have to get " the knack " of anticipating leaks, and tightening your

muscles _before_ the leak happens. Laughing, blowing up a balloon, sneezing,

thoughts about sex -- any one can be troublesome. It takes time to bring

everything back under control.

Good luck . . .

>

> Hello Everyone,

>

> This is Don M. Some may remember my story to date. I'm the 45 year old guy

who had protons at LLUMC in 2009. Unfortunate my treatment was unsuccessfull. I

had an endo recto MRI and with those images had a guided biopsy to the

suspicious areas at National Institute of Health (NIH). 8 cores came back

positive out of 18. All my other scans are negative for signes of metastatic

cancer. Had a radical prostatectomy on October 6th performed by Dr. Pinto and

his team at NIH, surgery lasted about 7 hrs. Wore my catheter for 14 days

> and just had it removed 2 days ago. I'm presently experiencing

leakage/dripping. The best was to describe it's like a leaky faucet. It's more

profound when walking/standing. When sitting or lying down it's not so bad.

I'm presently wearing men pads. Doing kegels and doing air squats in the shower

. Typically I do about 10 sets of 10 to 12 reps of kegels at 5 to 10 seconds

each and about 50 airsquats in the shower 2 x daily. Next week i'm going to

venture out and starting my running program again. I think if I wear a mens