Medical Forum / Diseases and Disorders / Prostate Cancer / December 2004
"Continence" post RRP means . . . what?
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I.P. Freely - 30 Nov 2004 03:24 GMT Many of you say that with patience, time, and Kegels you achieved continence, or dry shorts, sooner or later. Does that imply you simply learned to perform the Kegel isometric every moment you're standing, either consciously or subconsciously, or that some other mechanism took over so you're about like you were 30 years ago . . . no effort required to stay dry? The latter implies to me that sooner or later your original sphincter "woke up", stepped up to the plate, and became strong enough to stem the flow without your conscious involvement. Is that the case . . . I hope I hope I hope?
I.P.
Tee Doubleyou - 30 Nov 2004 04:24 GMT In my case it means that I am 100% continent. I had surgery exactly one year ago and had a few minor "incidents" during following weeks - not months.Maybe I was simply lucky.Maybe Kegel exercices which I was doing over and over BEFORE surgery helped. I dont know. But now I have no problems whatsever in this department. Tee
>Many of you say that with patience, time, and Kegels you achieved >continence, or dry shorts, sooner or later. Does that imply you simply [quoted text clipped - 7 lines] > >I.P. -- Verba volant, scripta manent.
ButtercupsDad@dog.net - 30 Nov 2004 12:41 GMT Hello IP: My RRP was 8-1-2003 and I am one of the unlucky ones that still has to wear pads, 1-2 per day depending upon activity level. For seven months I was going through 4-5 pads per day, and I was filling them up. From what I know it is the luck of the draw whether you are one of the lucky ones that return to full control, whether, for some, immediately after the catheter is removed, or within three months or so. When the catheter was removed I had almost no control at all, and for a couple weeks I was going through 6 pads per day. For some reason I have never leaked while laying down though. Guess we can thank gravity for that. At my last, and final, follow up visit with the uro he told me that at this point I will not get any better. No guess as to why. He did, however, tell me to try and get into the habit of consciously clamping down before getting up, stooping, etc., in order to reduce the amount of leakage. Over time that will become habit I suppose, and it will help. I did not take what he said to be along the lines of exercising the muscle, but rather shutting off the line before doing something that usually results in a leak. Not that I am happy about the incontinence, minor as it is, or the impotence, but try not to get too bummed out about leaking. Through my experience I have learned that lots of women over 50 have the same problem and manage to live with it and still be happy. BTW, after returning to work I got out of the habit of doing the Kegel exercises, and as I said above, I managed to get better anyway. But, to err on the side of safety, I would do them if I were you. Final note, the doc gave me prescriptions for Ditropan, Oxy something patch, etc. None of that helped the incontinence. Good luck. Thank you. David S.
>Many of you say that with patience, time, and Kegels you achieved >continence, or dry shorts, sooner or later. Does that imply you simply [quoted text clipped - 7 lines] > >I.P. Claude - 30 Nov 2004 14:46 GMT > Many of you say that with patience, time, and Kegels you achieved > continence, or dry shorts, sooner or later. Does that imply you simply [quoted text clipped - 7 lines] > > I.P. I had my RRP on 5/1/02 at age 64. I could control urine to some extent from the time I got home. When I stood up or moved, I consciously used the "Kegel muscles" to hold it. Within 48 hours I was basically continent and stopped thinking about "holding" the urine flow. My lower sphincter seemed to take over automatically. I had 2 accidents in the first year. One when I had a second martini and the second at night when I was dreaming of urinating (and acted out my dream). Since then, no accidents. I do find I have to think about bathrooms just as much as before when I suffered from BPH for a number of years, and I seem to pee just as often. I usually get up at least twice during the night. When I have to go, I have to go. I don't mess around. The pressure to release is at a lower spot in my plumbing, and I have the sense it's trying to get out, and if I wait too long I will wet my pants. In other words, I don't seem to have the control *with a full bladder* that I used to have. Now, why have I had such a good result? Skill of the surgeon? Certainly. But also, I have been thin in my latter years and have walked for an hour a day for most of those years. I think that keeps the lower musculature toned (unscientific, I know, but that's my opinion), which affects the sphincter (or whatever it is that holds the urine). In addition, since I have had BPH for so many years, I have had great practice in holding urine when I had to go---this might have been me doing the Kegels without even knowing it. And, of course, it may be a lot of luck. Who knows? Anyway, that's my continence story, and I'm grateful.
Steve Kramer - 30 Nov 2004 14:56 GMT I did mine whenever I thought of them, which was not as often as the doc wanted. It took me months, probably due to that fact.
 Signature Prostate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3bN0M0 PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron (1 mo) 07/21/2003 @ 48 PSA .07 .05 .06 Lupron (3 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50) non Illegitimi carborundum
> Many of you say that with patience, time, and Kegels you achieved > continence, or dry shorts, sooner or later. Does that imply you simply [quoted text clipped - 7 lines] > > I.P. Dave Perry - 30 Nov 2004 14:58 GMT Staying dry means doing so without consciously flexing the muscle. I've had some diffulty getting dry and still wear a pad for stress drips 16 months post-op but most of the time I'm dry without thinking or squeezing or doing anything consciously. My progress came slowly and it was not linear. I would have a couple of months of no progress, perhaps a month of regression followed by an awareness that I only filled one pad in a day to be followed by a three pad day. Overall though I'm in pretty good shape now and I could go padless if I were to just loll around the house doing nothing that would cause a squirt. The pad now is used for catching the cough/sneeze/stoop drips that would otherwise leave a small but socially unacceptable pants stain. I do have days where the pad has more perspiration in it than urine. Hope to be pad-free eventually but statistics say where I am at 18 months (this coming January) is where I'll be forever. We'll see. Dave Perry
> Many of you say that with patience, time, and Kegels you achieved > continence, or dry shorts, sooner or later. Does that imply you simply [quoted text clipped - 7 lines] > > I.P. Danny McCarty - 30 Nov 2004 17:08 GMT >Subject: "Continence" post RRP means . . . what? >From: "I.P. Freely" fuhgeddaboutit@noway.not [quoted text clipped - 12 lines] > >I.P. You don't HAVE your "original" sphincter, it was taken out along with your prostate. It is essentially part of the prostate and has to be "killed" or removed.
SIGNATURE File: Ranking the 20th Century Presidents: 1.Reagan 2.Eisenhower 3.Kennedy 4.Nixon 5.Bush 6.Hoover 7.Truman 8.T.Roosevelt 9.Coolidge 10.Ford 11.Carter 12.McKinley 13.Taft 14.Harding 15.Harrison 16.Clinton 17.Wilson 18.F.Roosevelt 19.Johnson
Claude - 30 Nov 2004 17:41 GMT > >Subject: "Continence" post RRP means . . . what? >>From: "I.P. Freely" fuhgeddaboutit@noway.not [quoted text clipped - 17 lines] > or > removed. But, as I understand it, there is a secondary sphincter lower down that becomes our primary (and only) one. If I'm not mistaken, this is basically the only sphincter women have.
I.P. Freely - 30 Nov 2004 18:24 GMT Danny's right, according to Walsh. We've lost the control the prostate used to provide, but still have a sphincter below the prostate for involuntary control plus the Kegel muscles for voluntary reinforcement. My question is how well these two can do the job without our conscious effort, if everything goes well.
From my status so far, some of us may benefit from carrying a little stool or monopod seat around with us, 'cause if I'm sitting I'm dry. " 'Scuse me, miss, but I've got to sit to keep my diaper dry. Now, then . . . what did you say your sign is?" Without that I find myself scooting around a room plopping my rear end on every piece of furniture in sight, like a puppy on a rug, to keep the cat between my thighs a little drier a little longer.
I AIN'T looking forward to a multiple-flight, cross-country trip soon, especially considering the new search procedures. No, you burger-flipper-dropout . . . that is NOT C-4 in my pants. Here, take a whiff, you moron . . . THAT'LL convince you. ;-)
Oh, the possibilities. If I'm gonna suffer, so is anyone who gives me any grief about it. It's like my Tee shirt that proclaims, "If you don't like my attitude, STOP TALKING TO ME" -- and I bought that before I knew I have the Big C . . . squared.
I.P.
>> You don't HAVE your "original" sphincter, it was taken out along with >> your >> prostate. It is essentially part of the prostate and has to be "killed" >> or >> removed. and Danny responded
> But, as I understand it, there is a secondary sphincter lower down that > becomes our primary (and only) one. If I'm not mistaken, this is > basically the only sphincter women have. I.P. Freely - 30 Nov 2004 18:40 GMT Oops . . . CLAUDE'S right, according to Walsh. I got lost in the <><><<>><<<>><><. I.P.
> Danny's right, according to Walsh. We've lost the control the prostate > used to provide, but still have a sphincter below the prostate for [quoted text clipped - 33 lines] >> becomes our primary (and only) one. If I'm not mistaken, this is >> basically the only sphincter women have. Danny McCarty - 03 Dec 2004 18:43 GMT >Subject: Re: "Continence" post RRP means . . . what? >From: "I.P. Freely" fuhgeddaboutit@noway.not [quoted text clipped - 42 lines] >>> becomes our primary (and only) one. If I'm not mistaken, this is >>> basically the only sphincter women have. Yes. We are both right, I think. ;-} I've been trying to puzzle it out in my copy of Gray's Anatomy.
Danny McCarty - 03 Dec 2004 19:07 GMT >Subject: Re: "Continence" post RRP means . . . what? >From: "I.P. Freely" fuhgeddaboutit@noway.not >Date: 11/30/2004 12:24 PM Central Standard Time >Message-id: <3%2rd.8591$M06.933@fe06.lga> ? ;-} Wrong order, there. Claude mentioned the secondary sphincter, I referred to the primary sphincter. The female uretha exits the bladder in front and proceeds out directly under the pubis while the male uretha exits the bladder from the bottom and then turns toward the front and proceeds under the pubis. Involuntary control does come back. I was alomst completely continent after about 2.5 years, before chemotherapy.
>Danny's right, according to Walsh. We've lost the control the prostate used >to provide, but still have a sphincter below the prostate for involuntary [quoted text clipped - 31 lines] >> becomes our primary (and only) one. If I'm not mistaken, this is >> basically the only sphincter women have. ButtercupsDad@dog.net - 01 Dec 2004 13:20 GMT From what I have read men have three (really two). The sphincter at the base of the bladder is removed in the RP (good point Danny). The muscular tissue in the prostate that surrounds the urethra acts "like a sphincter". Of course that goes in the RP. Both of these are tied to the involuntary nervous system, so you do not conciously control those. The remaining sphincter, at the base of the pelvis (whatever) is what we have left, and it is tied to both the voluntary and involuntary nervous systems. That means we have a degree of control there. Drink beer and go out in the cold and that is the one you are talking to.
I am not a doctor of course, and what you read here is regurgitation from my research prior to the surgery. But is it worth evey penny that you paid for it.
Good luck
Thank you. David S.
>> >Subject: "Continence" post RRP means . . . what? >>>From: "I.P. Freely" fuhgeddaboutit@noway.not [quoted text clipped - 21 lines] >becomes our primary (and only) one. If I'm not mistaken, this is basically >the only sphincter women have. Mike Anzel - 30 Nov 2004 18:03 GMT I too am just post RRP. Surgery was on 11/10. I'm 47 and hope this is normal recovery as well. It's almost 3 weeks and I am very dependent on pads at this time. I just purchased 3 packs of depends underwear for nightime use. I'm having trouble doing kegels. Find them difficult to do. I find that walking seems to help. I do manage to go urinate in the bathroom several times per day. My steam was very "spray like" but now it's more like a stream. Just hope that each day gets better .
> Many of you say that with patience, time, and Kegels you achieved > continence, or dry shorts, sooner or later. Does that imply you simply [quoted text clipped - 7 lines] > > I.P. I.P. Freely - 30 Nov 2004 18:37 GMT I'm getting better rapidly in terms of diapers per day, but much of the improvement is from changes of habit, not physiology. I Kegel as I arise from a chair or bed, go straight to the bathroom every time, void to take the pressure off the system, try to Kegel as long as I'm standing or walking, sit as often and as long as possible, and avoid unnecessary standing/walking. I could go jogging if it was worth soaked diapers, but it's not, so I don't. No one has yet told me whether walking helps continence/control, I feel fine otherwise, and I'll hit the Bowflex again when I reach the magic 6 weeks post-op, so I see no need to walk for the sake of walking.
Am I missing something?
I.P.
>I too am just post RRP. Surgery was on 11/10. I'm 47 and hope this is >normal recovery as well. It's almost 3 weeks and I am very dependent on [quoted text clipped - 3 lines] >bathroom several times per day. My steam was very "spray like" but now >it's more like a stream. Just hope that each day gets better . Dave Perry - 30 Nov 2004 22:39 GMT Some people swear that walking helped their continence. These may be the same people who swear by Kegels. All I know is that I leaked most when walking during the first few months and even now I find that when I do have non-stress leakage it is mostly when walking. I don't jog and have no desire to start. I do bicycle occasionally and don't leak while sitting on the seat but do leak getting on and off. I did take a vacation to Italy, direct flight from San Francisco to Frankfurt and another on to Rome last September, 2003, about 2 months post-op. At the time my only progress in the continence department was that I was able to hold it more or less while walking from a chair to the bathroom. I managed to get an aisle seat that wasn't too far from the can and I made a whole bunch of trips, about every hour or so whenever the "unoccupied" light was on. I couldn't hold it if I had to wait in line. I was able to make the entire 15 day trip starting off with about two packages of Depends pads spread throughout all our luggage. It was the only time we ever came home with emptier bags than when we left. We did discover there are plenty of Depend-like things all over Italy and I assume everywhere else. All drugstores and groceries of any size have them. Similar blue and white package too. I still pack a bunch when I go away though. Dave Perry
> I'm getting better rapidly in terms of diapers per day, but much of the > improvement is from changes of habit, not physiology. I Kegel as I arise [quoted text clipped - 18 lines] > >bathroom several times per day. My steam was very "spray like" but now > >it's more like a stream. Just hope that each day gets better . Sandy K. - 30 Nov 2004 21:54 GMT > Many of you say that with patience, time, and Kegels you achieved > continence, or dry shorts, sooner or later. Does that imply you simply [quoted text clipped - 7 lines] > > I.P. Continence to me means I don't wet myself any longer. Do I constantly have to be aware of it?? No, I don't. I had my RRP in June, 2004 at age 47. I never really soaked the pads. Early on, in hindsight, I found that a lot of my leakage was the result of the healing I had to go through - most likely the result of the catheter. Now, I don't not consiously have to control myself. However, I do find that if I force a fart (sorry, no other way to expalin it) then I may leak - albeit a miniscule amount. There are times when I've thought I've leaked and when I checked my underwear, I was dry. fortunately, I do not leak when I sneeze or cough - especially good since I'm just getting over bronchitis!! I did do kegels - about 40 a day - aftert he cath came out. I rarely do them now and the only time I hold it in, is when I pass gas. I do try to "hit the head" before leaving the house, office,etc. So that may help to keep me dry. I also found that I was peeing quite frequently - every 2.5 - 3 hours. However, when I went for my PSA a few weeks back, I mentioned it to my Uro and he prescribed Sanctura. So far, I'm finding I can go 5-6 hours without feeling the need to pee. My guess is that time will help you.
Sandy K.
I.P. Freely - 30 Nov 2004 23:39 GMT I got SEVERE, debilitating -- even hospitalization-worthy sometimes -- bronchitis once or twice a year for 15-20 years, until my 6th or 8th doctor asked me, "Why don't you stop getting it?" He wasn't kidding; he said, "Buy a humidifier and it'll cease." I did, and have not had bronchitis once since that day . . . in about 1985.
We breathe through our noses all night. This dries, then cracks, our mucous membranes. Bacteria imhabit, then thrive in, the cracks. They often do best in our sinuses, producing a little clear, watery post-nasal drip, triggering a little cough as it slides down our throat a few days later. Then it infects the throat, then grows in coverage and intensity, as its product turns yellow, then green, then brown as it moves down from our sinuses to our throats to our bronchial tubes to our lungs, at which point we are dangerously, horribly ill. Then with antibiotics and months of residual hacking and recuperation, we feel good again, just in time to get that old, familiar dry feeling in our throat again.
Now, which sounds simpler . . . that, or a humidifier beside your bed? I've tried MANY kinds, and prefer the small, one-person, evaporative type, filled with distilled water to minimize maintenance.
I.P.
> do not leak when I sneeze or cough - especially good since > I'm just getting over bronchitis!! JerryW - 01 Dec 2004 00:13 GMT I.P.
Just to add my $.02 to the many good responses you've received so far. I believe luck certainly has something to do with the incontinence issue, as well as the skill of the surgeon, and, perhaps, the roll of the dice in exactly how close the tumor is to the sphincter that will remain after the prostate is removed. It seems I was told, or read, that sometimes part of that one last sphincter may be damaged in the removal of the prostate if the tumor is close to that margin.
As I've posted here before, I am one of the lucky ones in this regard. My RRP was May 18th...used about 3-5 pads a day for the first six weeks, or so...down to 2-3 for the next couple of weeks...and by the middle to end of August I found myself changing a dry pad once a day. Then I just quit using the pads altogether. I've been dry since then, if dry includes the possibility of a drop or two leak once in awhile if I pass gas or sneeze hard without remembering to clench up first. Otherwise, I don't even think about it. Whatever sphincter I have left seems to do the job pretty much involuntarily. I don't think I go to the bathroom any more now than before the surgery, but I'm a lot more conscious of where the nearest one is and how much trouble I can avoid by making use of it whenever I can and not waiting until the pressure is on. When I do need to go, it is more urgent than it used to be, or as least I imagine it to be so. Also, I didn't pay a lot of attention to doing the kegel exercises...mostly just starting and stopping the stream during urination while standing.
At any rate, good luck to you, and I hope your experience will be like mine, or better.
 Signature JerryW jweindel at flash dot net
2/11/04 PSA 2.6, Suspicious DRE (age 62) 2/23/04 Biopsy: Gleason 3+4=7, T2a, left lobe 5/18/04 RRP, Path: Gleason 4+3=7, T2c, both lobes Tumor organ-contained; lymph nodes clear, seminal vesicles clear Both nerve bundles spared 7/13/04 PSA <0.1 10/12/04 PSA <0.1
> Many of you say that with patience, time, and Kegels you achieved > continence, or dry shorts, sooner or later. Does that imply you simply [quoted text clipped - 7 lines] > > I.P. John Baker - 05 Dec 2004 15:08 GMT Hi::
Can someone tell me what they use as "Pads". I had seeding on the 2nd of November, and have started to leak recently. It feels as if I need something to contain it!
Best
John Baker
>I.P. > [quoted text clipped - 24 lines] >At any rate, good luck to you, and I hope your experience will be like mine, >or better. JerryW - 05 Dec 2004 15:29 GMT John,
I used "Kroger Guards" incontinent pads for men. They are the store brand knock-offs of the brand-name "Depends" Guards incontinent pads for men. I'm sure there are many varieties and sizes of incontinent pads available at your local drugstore or supermarket or Wal-Mart or Walgreens, etc. They generally have an adhesive strip on the outside to help keep them in place inside of jockey briefs, for example. There are various types of incontinent underwear, as well. Sort of like Huggies Pull-ups for toddlers, only men-sized.
Some have posted here that they use some type of female pads, menstrual pads, that are lighter and/or thinner, etc. I didn't try them. If you're not leaking badly, you may want to explore this option.
Good luck.
 Signature JerryW jweindel at flash dot net
2/11/04 PSA 2.6, Suspicious DRE (age 62) 2/23/04 Biopsy: Gleason 3+4=7, T2a, left lobe 5/18/04 RRP, Path: Gleason 4+3=7, T2c, both lobes Tumor organ-contained; lymph nodes clear, seminal vesicles clear Both nerve bundles spared 7/13/04 PSA <0.1 10/12/04 PSA <0.1
> Hi:: > [quoted text clipped - 40 lines] >>mine, >>or better. Debbie Trujillo - 05 Dec 2004 16:52 GMT On 12/5/04 7:08 AM, in article p196r0lg9d81det3pbmb1966ido37mom3m@4ax.com,
> Hi:: > [quoted text clipped - 15 lines] >> that one last sphincter may be damaged in the removal of the prostate if the >> tumor is close to that margin. If your leaking is light there are Tenas for men. WalMart carries those.
>> As I've posted here before, I am one of the lucky ones in this regard. My >> RRP was May 18th...used about 3-5 pads a day for the first six weeks, or [quoted text clipped - 14 lines] >> At any rate, good luck to you, and I hope your experience will be like mine, >> or better. Steve Kramer - 05 Dec 2004 17:31 GMT I use Tevas for Men (I think that's what they are called). But, I need light pads and only when golfing, moving furniture and parties where I'm expected to drink a lot of beer and stand up a lot.
 Signature Prostate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3bN0M0 PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron (1 mo) 07/21/2003 @ 48 PSA .07 .05 .06 Lupron (3 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50) non Illegitimi carborundum
> Hi:: > [quoted text clipped - 33 lines] > >At any rate, good luck to you, and I hope your experience will be like mine, > >or better. DonC - 05 Dec 2004 19:55 GMT I have used guards for men -- both the Depends brand and store brands which are generally made by Kimberly-Clark. The Depends brand are slightly narrower (maybe an inch) than the store brands but thicker. Depends hold about 10% more liquid than the store brand by my tests -- 10.6oz vs. .4oz -- but I'd never let one get beyond 3 to 5 ounces so I don't think that's too relevant. The store brands are wider and thinner so they may be more comfortable for some.
Good Luck!
> Hi:: > [quoted text clipped - 6 lines] > > >I.P.
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