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Posted 5/11/2007 1:25 AM (GMT 0)

biker 90, pasayten, cedar chopper, green acres, berb..........

Thanks for all your encouraging comments.  As a former paramedic and biomedical engineer,  I know you are all correct when you say that every body heals at different rates,  and no one case is typical.  It just bothers me to no end not knowing wether or not I might have some nerve / sphincter damage,  or just a slow case of returning continence.  As someone who has been on the inside of the medical community,  and seen a lot of questionable practices, I don't always trust what the docs tell me!

Anyway,  I have no choice but to move ahead and do my best with the Kegels, etc. and hope for the best. Going for my first post - op appointment and PSA on 5/15... hoping for 0.00!

Thanks.....

Bill

Posted 5/11/2007 1:46 AM (GMT 0)
Cedar, the info on the bio-feedback sounds very interesting. I am going to the University of Oklahoma Urology Dept on Monday for a second opinion. Will ask about the bio-feedback then. Your improvement gives me hope.

see ya, KW
Posted 5/14/2007 2:04 PM (GMT 0)
Hi Bill,

Well I'm another one that is concerned about leaking.....however as I just read all the previous posts in this thread I see that I am not alone and it appears that I fall within the norm. I am about three weeks post op and am using 8 to 10 pads a day. I walk about three miles daily and do my kegals when walking......20 reps holding each rep for 5 seconds then repeating in 10 seconds. I try to hold off drinking liquids after supper or around 6pm and put on a dry pad at bedtime. I am usually fairly dry in the morning, although I do get up a couple times at night and go. I can start and stop my stream fairly well and practice kegals while urinating. One things that I apparently missed was what are (Elevator Kegals)?? If someone could explain that I would appreciate it. Hang in there Bill, seems like lots of people are in the boat with you......seems like it gets a little better every day post operative. JWB
Posted 5/14/2007 5:11 PM (GMT 0)
JWB,

Below I copied an explanation of the "Elevator Kegals" I wrote on my Journey Thread (Currently on Page Three.  I just update my Journey occassionally for now.  I'll get Bluebird to help me with a presentation edit later.)

Take time to let your bladder get comfortable again - and while you wait keep doing a variety of Kegals!

Keeping all of you in positively healthy thoughts!

CCedar

*********************  Copied from Cedar Chopper's Thread

I think those of us that take awhile to control incontinence are more sensitive to how our bladders were moved and the valve we can't control on the bladder is not happy in its new home has not returned to normal operation.  My physician and I also think that those of us that return to physical work increase the problems for this bladder valve as we add more than normal pressures on the newly stretched bladder from lifting and walking around (for me, 14 hours a day....). 

My point is that if you are fighting incontinence, work on the recruiting patterns for ALL the pelvic floor muscles (anus, kegel sphincter, pubic muscles above the penis, and even to a certain extent the muscles that attach to the area and run down the inside of the thighs)  - work on recruiting patterns of these muscles.  You can't keep them all flexed all the time.  Especially if you are walking for more than 30 minutes!

 If you do "elevator kegels" - half power for 5 seconds, full power for 5 seconds, and then (VERY IMPORTANT) half power for 5 seconds, then rest 10 seconds - it mimics the "harmonic" patterns of the muscles when you are continent and walking.  These muscles work with the unconsciously controlled valve on the bladder.  They don't replace it. 

The "medical art" is to get this valve (after it heals from surgery) to recognize your kegel work as a message to open or close.  This is how women pee or don't pee.

Keeping you in thoughts of perfect health (and a new welding machine....),

Posted 5/14/2007 9:07 PM (GMT 0)

JWB:

Thanks for your post.  I was about to send you a description of elevator kegels,  but I see Cedar Chopper already did.  I have been trying the elevators for a few days now ever since Cedar Chopper last posted them to me,  its a little hard to get the knack of the half power ones.

It seems as though there are quite a few of us who are having a difficult time with incontinence.  I am only 5 weeks post catheter,  so I don't expect miracles,  but the most disturbing part is my CONSTANT drip during the day which does not allow me to build up ANY volume in my bladder at all.

Thanks again...

Bill

Posted 5/14/2007 10:32 PM (GMT 0)
Hi again Bill,

I like you apparently have a constant drip during the day while I am up and moving around or sitting. I never have the urge to " take a leak" during the day, although I do go and try several times a day.....very seldom have any flow other than the little surge that appears occasionally. Now at night after I've lain down for a while its a different story. I will wake up a couple of times during the night with a urgency to go and will make it to the toilet okay. I can then "whiz like a racehorse", kind of brings back memories when I was a youngster!!! I guess everyone is different, I will try getting into the "elevator kegels", maybe they will make a difference. Thanks for the quick reply, I guess misery love company.......jwb.
Posted 5/15/2007 1:11 AM (GMT 0)
Hi Again Bill:  I'm four months out and doing well in the continency department (pad-free) during the day.  But in the evening, between about 6 and 8 p.m., uncontrollable dripping often starts and continues till I go to bed.  Guys tell me that the muscles get tired toward the end of the day and that's the cause.

I also have a unique situation where if I fall asleep on my recliner after about 8 p.m., I wake up wet at about 10 p.m. or so.  It never happens during the night in bed, or when I fall asleep on the couch -- just in the recliner.  GO FIGURE!!  (Something to do with the V-shape of the body in a recliner?)

During the first five weeks or so, I was so focused on my urination etc. that I was constantly running to the bathroom and, like you, never felt as though my bladder was full -- or completely empty, for that matter.  Then, I read that the bladder can hold about 16 ounces and, as time went by,  I would try to hold for a half-hour, than an hour before letting loose with the juice.  Before I knew it, I wasn't preoccupied with peeing and got back on a normal schedule again.  So right now, I'm fine during the day and confident about going anywhere without a pad.  But if I had to go to an evening function -- with beige pants on -- I'd probably wear a pad.

I like the sound of the elevator kegels and intend to try those.

Best to ya!

It'll get better.  We just need to get used to our new situations "down there."  The surgery is more of a rotor-rooter job than most of us anticipated.

Posted 5/16/2007 5:41 PM (GMT 0)

Hi PianoMan:

Thanks for your post.  Glad to hear you're mostly dry during the day.  They say that the normal course of events is for the pelvic floor muscles to get tired during the evening,  and it sounds like that is what happens to you.  Everything I've read indicates that should resolve itself also.

I sure hope I make it to your point soon.... I would'nt be so upset if only I could accumulate even 1 or 2 ounces in my bladder instead of it all constantly dripping out.  I seem to have absolutely no control,  and am still using up to 15 pads a day..... 6 weeks after surgery!

I'm starting biofeedback sessions soon,  hope they help.

Bill

Posted 5/18/2007 3:19 AM (GMT 0)

Bill,

I am now three months post radical open surgery.  I had some encouragement at about one and a half months, but thus far no improvement since then.  I leak constantly when I am up moving around, I gush when I stand from sitting.  I too am having a hard time wondering if I have damage to sphinter or nerves or am just a slow healer.  I too am going on, even moving to a new job and new city soon.  But why have I not improved?  Will I have to always be changing my diapers or, in frustratin, putting that clamp back on my penis... in spite of what Dr. Walse said about it hindering... it sure beats pouring pee all the time.  

In addition to the leaking thingy, I have a bleeding problem that no one seems to know what to think of, even my surgeon.  It happens every time I walk as little as a mile, and then goes away as soon as I stop the walk.  Surgeon finally had me go in tp do that bladder and kidney x ray (while they pumped some dye in my vein and tomorrow I will have an Untra Sound... both to see where/why I am bleeding).  But I won't be able to see the surgeon until May 31st to even talk to him about if anything showed up.  To say the least, I remain stressed about my incontinence... and my impotence, but, hey, wife & I have had years of good relationship.  Just don't want it to end yet.  So I could say, "Heads up... everything will be just fine!", but I don't really feel that at this point.  I know, I know, someone will say, "Only three months?  It takes six to twelve, to twenty-four, so stop your complaining..." and with that thought I will stop.

Gene

Posted 5/18/2007 10:18 AM (GMT 0)

Gene,

I was wondering how you are doing.  Thanks for keeping us in the loop.

I know you will get better.

Still, I can't help but consider the bleeding issue has something to do with your lack of at least a little progress.  I would press this issue - as you have been.  I don't feel this is something to keep quiet about.

When I was first returning to work in weeks 4 through 6 and not holding anything in my bladder, I too found changing so many pads more than annoying - yes discouraging.

What I found helpful was to use BOTH the men's pad (holds 8 oz.) that adheres in the front of the underwear AND a woman's MAXIMUM ABSORBENCY incontinence pad (holds 12 oz.) at a 90 degree angle, under the penis and over the scrotum.

This secondary, highly absorbent pad would generally fill first (unless I knocked it out of place....) and the men's pad was my back-up in case I forgot to change pads every 90 minutes or so.  The secondary pad was VERY easy to switch out and whenever both pads got wet, I would switch them both out.  This soooo reminded me of changing diapers....  and as I would generally have a poignant moment or two of tears every day - it was very like having an infant in the house.  And regardless, our daily walk must continue.....  I still cry several times a week.  Every day it becomes easier to ascribe them to joy rather than trauma....

If you are wet all the time, don't forget a barrier cream and maybe an occasional fungicide.  The fungicide I prefer is the generic form of Tinactin.

Read Psalm 139...  "....fearfully and wonderfully made...." !!

CCedar  

P.S., Gene, Thank you for your kind and encouraging words concering my weekly updates to the parents of my students.  I still want to here about your many years in the ministry.  My best thoughts to you and your family.  ICTHUS  CC

Posted 5/18/2007 2:04 PM (GMT 0)

Gene:

I sense,  and share,  your frustration with the leaking problem..... although at 3 months you have much more of a right to feel that way than I do at only 6 weeks.  As with you,  it is the lack of any perceptable progress that has me most discouraged.  I'm also fearful of the fact that after reading so many posts on several message boards,  there seems to be no reliable markers as to who will regain continence and who won't.  I recently corresponded with a guy who has been like us for over 2 years,  and yet another who was like us for 8 months and recovered almost overnight.  Go figure.

You mentioned occasionally using a clamp.  Is that the "Cunningham Clamp" I've seen advertised on the net?  Anything in particular I should look for when buying one?

I seem to remember reading a post on the Google Groups site,  group "alt.support.cancer.prost.",  from a guy who also had unexplained bleeding quite a while after his surgery. I don't remember the outcome,  but you might try joining that group and searching for the post.

Keep us posted on your progress,  good luck.

Bill

Posted 5/24/2007 3:11 AM (GMT 0)

Phil:

I'm sorry to say that I have not improved a bit. At 7 weeks post-op, I'm still using 10-12 pads a day. I continue to have CONSTANT leaking / dripping during the day. My urethra is obviously wide open, no amount of the darn Kegeling seems to do any good. Like yourself, when sitting I do not leak because of the pressure this exerts on the urethra thereby closing it off..... however, as soon as I get up I have a surge of pent-up urine which shoots out and negates any period of dryness which I may have enjoyed. Also when sleeping, I'm mostly dry, but again, this is because when lying down the bladder is lower than the outlet of the penis so since water seeks it's own level, I don't leak... but as soon as I get up, the faucet opens. Very hard to kegel it shut long enough to get to the bathroom.

I'm starting biofeedback tomorrow at a local clinic, we'll see what happens.

Sorry to be so negative, but this situation is really bringing me down in a big way. Especially when I see all the posts of these guys who have had no incontinence to speak of. I just don't get it. I'm beginning to regret my decision to have the surgery at all, if I have to live like a 90 year old man in a nursing home for the rest of my life. Should have taken a chance with the small amount of cancer rather than live like this.

As far as the pain you described, I think it might be from the kegeling. I notice that I get similar pains when I do too much kegeling.

Please forgive my ranting, I have never been so frustrated in my life.... what with the pads, the diapers, the smell, the wet pants at the mall, the BS from the doctors, etc.

Hope at least Abe is doing better!

Bill

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Posted 5/24/2007 4:34 AM (GMT 0)
Bill:  I think it's a great thing that you are going for the biofeedback therapy.  I wish I had.

Tell me though, when you stand at the toilet peeing, can you stop the flow?  I'm not talking about when you get up out of a chair, or finish bending over to pick up something or turn around in the car and the dam bursts -- I was there too.

But when you pee on your own, can you stop and start the flow at all?  If so, that's a good thing and I wonder if you're Kegeling the wrong way, meaning flexing too hard, or using muscles you shouldn't?  I did that and it set me back a bit.

If you can start and stop your flow in the bathroom, remember that feeling and practice that contraction when you Kegel.  And when you Kegel outside the bathroom, put your hands on your penis like you're taking a Pi$$ (touch your penis from outside your pants while you Kegel).  It will naturally tell your muscles what they need to do.

Just my my two cents.   It worked for me when I wondered when the hell I'd ever let go of those pads.

Another thought.  Lighten up a bit.  Try not doing Kegels for a day and see what happens.  It worked for me and my brother in law.  I'm not an M.D. so don't take this as gospel.

I can relate to your frustration, but I believe you will get through this.  Patience, my man, patience.

Best to ya.

TK

Posted 5/24/2007 10:57 AM (GMT 0)

Hi Piano Man:

When standing at the toilet,  I can't completely stop the flow.... I can slow it down for a split second,  but it returns to full flow very quickly.  The only time I can practice this is in the morning when I get up,  because it is the only time I can ever accumulate any volume in my bladder.  As I mentioned,  during the day I can't accumulate any volume in my bladder,  because of the constant drip.  Also,  I have tried stopping the kegels for a few days,  but it made no difference.

I really think that I'm doing the kegels correctly because I did them for a few weeks before my surgery,  and was able to fully start and stop the flow, so I know the correct "feel" of it.  I'm really concerned that, because my prostate was rather large (61 grams),  perhaps there was some damage / scar tissue to my pelvic floor and sphincter muscles.

I can't imagine having to live like this much longer.

Thanks....

Bill

Posted 5/24/2007 5:41 PM (GMT 0)
Well hang in there, Bill.  You are only a few weeks out of surgery and everyone heals at their own pace.  Good luck with the biofeedback.  I have a feeling you'll be fine -- your sphincter's just being a little stubborn right now.  Keep us posted and keep your chin up!!
Posted 5/24/2007 7:31 PM (GMT 0)

Bill,

I also say hang in there!   I was getting very frustrated 2 weeks after catheter was out.  No drips/leakage when laying down and sleeping...  Minimal leakage (most of time nothing at all sitting...  could hold keagels and make it to the bathroom with no leakage...  BUT, when getting up from a sitting position and forgetting keaqgles, and when walking around, I was like a pump and leaked like a seive,  minimal to no bladder retention at all...

Now, at 3 weeks, I am seeing some definite improvment while getting up and even walking around...  If I concentrate on it, I can walk around 20 - 40 minutes without significant leakage and retain about 2-4 oz of urine.  It will then degrade for awhile of constant leaqking, but then again a little later, I can go another 20-40minutes.

I am much happier this week...  Using about  3-4 pads a day now...  Was at 5-6...

Still doing my 3 session per day of keagels (15 reps each time) and I was also told to not to hold the keagle rep over 10 secs...  I was doing 15-20 before.  I have also incorporated Cedar's elevator into 1-2 of my sessions per day.

This incontinace "worry and fear" was my biggest concern...  Even more so than the operation or ED.  But I now have more faith...  My recovery was just not following my schedule...  And being a worrier, this drove me to times of frustration.  Maybe God is just reinforcing into me that he is in control and not me...  He needs to do that periodically as I tend to overlook him when things seem to be good and under my control...  :-)

I pray that we will all get thru our recoveries and trials and will gain the knowledge and compassion to help others that will have to go down this road and journey in our lives on earth.

God Bless!

Ray

Posted 5/24/2007 8:56 PM (GMT 0)

Bill,

Your statement that you "can't stop the flow" and that you can accumulate urine while reclined seems good news to me.  It suggests you have a weak kegel sphincter - AND THAT THERE IS NOTHING WRONG WITH YOUR SMOOTH MUSCLE (not consciously controlled) BLADDER VALVE.

Your bio-feedback therapist will isolate your kegel control and coach you with an exercise routine just for you.  Be patient and find times to do your routine in addition to the "reps" you are assigned.  I do my assigned exercises while driving to and from work.  I do extra reps when I do my other calesthenic exercises.

I know you will get better.  Be patient and think of yourself as only well.  You are not incontinent, it's just a place your leaving.... :-)

CCedar

Posted 5/29/2007 12:46 AM (GMT 0)

Just something to keep this thread going because it is very important to me and to others who are experiencing continuing incontinence.

I go to see the surgeon Thursday, the 31st to find out if the dye x-ray thing gave him some insight about my bleeding and incontinence.  I will report back, but I'm not sure when since I am scheduled to leave town again right after the doctor visit. 

My incontinence has continued at the same pace and now I have reverted to using the Bard-Cunningham Clamp (if you want to know more, do a search and find their website.) By usinging the clamp I use only one pad a day.  I also remember (most of the time) to do my keagals. 

Somthing new is developing, which seems to me to be a a problem with scarr tissue now.  I believe the proper word is "Stricture".  Is that right?  My urine stream is smaller now and when I sit on the commode, it will hardly flow all.  I am now 3 monsths, 2 weeks post surgery.  But I am able to function much better with the clamp.  I am aware of the negative feelings on the board regarding the clamp, but it has helped me return to norlal and I think I had rather use that than have a surgery for an artificual sphincter. 

Now I am ready for any feedback anyone wants to give.  I will listen with open ears and a floppy sphincter.  Moreover, I do not want to encourage anyone to use the clamp on my say-so.  It just seems to be most practical for me at this time of change (moving to a new city swith new responsibilities) in my life.

Gene 

Posted 6/4/2007 3:42 AM (GMT 0)
bump
Posted 6/14/2007 4:00 AM (GMT 0)
Berb....

How long post surgery before you started running again?...What distance initially?...How frequently?...How did you deal with incontinence while running or exercising in general?...

Thank you...adb8s
Posted 6/14/2007 10:08 AM (GMT 0)
Hi adb8s

My urologist told me that I could run 6 weeks after surgery. I walked up until this point, then started running a few yards at a time very slowly. When nothing came apart, I increased the distance and after only 4 days, I ran 45 minutes. It was very slow, and I had some mild discomfort in the bladder area, and a small amount of blood in my urine, but my urologist was not concerned about it.

I continued running around 30 minutes 4-5 times a week for the next month or so. Nothing fast or hard - very gentle. I ran my first race of 5 kms one month after I started running (10 weeks after surgery), and have continued to build up from there. I run 60 - 90 minutes a day during the week. However, I am currently at the business end of my preparation for a remote 100 km mountain trail race in August, so in addition to my week day runs, I run longer distances on the weekends. My longest so far since my operation was on Sunday when I completed a 9 hour solo run in the forest with a pack containing the food and safety gear I'll have to take with me on the race in August (about 13 pounds). All things considered, I'm very happy with the progress I have made with my fitness since the operation.

Incontinence adds a complexity to the process, but it is not an insurmountable obstacle. I wear Depends Guards inside firm jockey briefs that are sold as "athletic briefs". These hold the pad in place surprisingly well, even when full of urine. Running seems to increase the flow of urine from the kidneys (in part due to the increased fluid intake), and it is not uncommon for me to fill a pad every 45 to 60 minutes when on a run. I do most of my running on trails and I simply move off the trail and change the pad, and place it in a ziplock bag to carry home with me in my back pack. With practice, I can now change the pad and be on my way in around 3 minutes.

5 months after surgery I'm still totally incontinent in the day (night time has pretty much come good now), and I still go through 8-10 pads a day. Clearly I am a slow improver.

Hope this helps.

Regards
Berb
Posted 6/16/2007 12:08 AM (GMT 0)
Berb...

Thank you for the helpful information...After getting your reply I checked to see if I could start jogging again...The Doctor's nurse suggested I wait a couple of more weeks - the 6 week post surgery point...The last couple of days I tried a very slow jog but found after 50 yds or so I had to stop and walk...Then I'd try again...Kinda like painfully slow intervals...The aerobic conditioning is about zero at this point but I figure working on that problem will take my mind off the incontinence issue...I'll give the briefs a try...I also like the way you handle the pads on the run...Keep on running...Many thanks...adb8s
Posted 8/7/2007 3:32 AM (GMT 0)

Hi again everyone.....

I'm Bill23, the guy who started the thread "Incontinence bad 3 weeks after surgery", back in April.  As you may recall, I was one of those who suffered from TOTAL, non-stop leaking all day long, using upwards of 15 soaked pads per day. I stopped posting in June because I realized that my utter disgust and depression with the situation was being reflected in my posts to a degree that I felt it wasn't doing anyone any good to hear about it any more. Frankly, I was also fed up with reading posts from those lucky guys who were continent after only a few days or weeks. I just decided to continue the kegels as I had been, and let the chips fall where they may.

The reason I have resurfaced is to report on my progress, and to offer those of you who are currently suffering with major incontinence a ray of hope.

I can't explain why, but on July 3rd., (3 months after catheter removal), I got out of bed fully expecting a massive burst of urine to rear it's ugly head as usual. For some reason, it didn't happen, and I actually made it to the bathroom in a normal fashion. As the morning progressed, I was actually able to accumulate 2 to 4 ounces of urine in my bladder with very minimal leakage. I only used 2 pads that morning, where just the day before I used 5 to 6. The rest of the day proceeded with similar results.

The following day was even better, and I have progressed to using only 2 minimally wet pads per day as of today, August 6th.

So the bottom line is that I went from 3 months of total incontinence, to a very much improved situation in only a few days. I can even celebrate with a few drinks now, and although alcohol still causes a slight leakage, I can certainly live with that.

I hope some of the guys I had been corresponding with are doing well. I apologize for leaving the thread so abruptly.

Good luck to all, and although I know it is difficult, try to deal with it and hopefully you will have an experience like mine.

PS...... For what its worth, I did take a few biofeedback lessons in June, and the nurse instructed me to do 3 sets per day of the following..... hold the kegel for 5 seconds, rest for 10 seconds, repeat 30 times. What was unusual about this is that I had never seen anyone recommend a rest period that was TWICE the holding period. (10 seconds rest vs. 5 seconds hold). Maybe that had something to do with it.

Bill

Posted 8/7/2007 1:02 PM (GMT 0)
"Whenever I'm in a standing or walking posture, I leak continuously. Using anywhere from 10 - 15 pads per day. The leak is so bad, my bladder never fills. I'm doing 10 sets of Kegel excercises a day. I don't leak when sleeping, and in fact my bladder typically fills to 8 - 12 ounces at night. I also don't leak when sitting. But as soon as I resume standing, the faucet turns on."

I just had the catheter removed Friday, August 3, and I've had exactly the same experience for the last 4 days: my bladder fills fairly well while sleeping with minimal leakage, there's not much leakage while I stay sitting in 1 position, but when I get up the bladder just starts draining uncontrollably. While walking around there is constant dribbling. After sleeping or sitting, If I'm at home I can rush to the bathroom in order to empty most of the urine into a toilet or shower, but if I'm out of the house I dread to think what will happen. I haven't tried to drive yet.

I just read the last entry, about the modified Kegel exercises. I'll see what I can do. At the moment I can't even seem to do the Kegel exercises without provoking an attack of dribbling. 

 

Posted 8/8/2007 4:12 AM (GMT 0)
Hey Gene6163, I too experienced bleeding, especially after exercise -- working in the yard, etc. I'm only 2 months postDa Vinci, but it worried me so I checked with Dr. I was told that internal healing can take several weeks, even months and that the minimal bleeding I had was not unusual. It seems to have gone away in the last week or so. I'm experiencing a weak stream, too. When the catheter first was removed, I "pe*d like a racehorse." In the last couple of weeks, the stream has slowed way down, to the point that I sometimes have to push -- just like before surgery! I haven't talked to dr yet. Have you talked to your dr about this? I'd be interested in his/her comments, as well as anyone else who has experienced this.
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