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Medical Forum / Diseases and Disorders / Prostate Cancer / February 2005Incontinence
I attended an US Too gathering Tues. evening where the primary topic was incontinence with an interesting presentation by a physical therapist. One of the group members who is a retired M.D. has a web site that may be of interest to some members of this group. http://www.diapersbedamned.com/ I'm not offering an opinion, as I have no experience with incontinence or Dr. Papa's methods, only a link to the site. Tom I have had no experience with condom catheters or other external urine-collecting devices. I have had some experience with incontinence. Not a lot, thankfully! I wore a Kroger brand Guards for Men incontinence pad for about three months after my catheter came out, as suggested by my Urologist. I also considered the advice against such external devices by Dr. Walsh and others. I never experienced any skin problems, etc. alluded to by Dr. Papa on his website. I was able to move about relatively comfortably with the pad, and be as active as my recuperation allowed. It looks like Dr. Papa's recommendations in lieu of pads or diapers entail a fair amount of trouble to go through. Also, I can just imagine the possible difficulties with a condom catheter, taped in place, attached to a urine collection bag tied to the bottom of the leg of a pair of boxer shorts. Any joggers in the group? Walkers? Dancers? Wind-surfers??? (Virus-free signature follows)  SignatureJerryW 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 >I attended an US Too gathering Tues. evening where the primary topic was > incontinence with an interesting presentation by a physical therapist. [quoted text clipped - 6 lines] > > Tom > I attended an US Too gathering Tues. evening where the primary topic was > incontinence with an interesting presentation by a physical therapist. One [quoted text clipped - 5 lines] > > Tom I tried the condom catheter early on thanks to suggestions from my sister-in-law who is a nurse. My advice is to avoid them. It just isn't worth the hassle. I experienced leakage and blockage no matter what I tried. When I absolutely, positively had to be dry for an extended period of time I used a clamp which in spite of all the ranting of Walsh and others resulted in no negative effects. Now keep in mind that this is not a device to use frequently. I probably used it less than a dozen times over the first two months and typically no more than 4 hours at any one time.. I'm amused by the boxer short ties but must admit that I never tried them. Diapers may be "damned" but they sure are a good solution until one dries up. That is, if manpads are considered diapers along with full depends and other such options. Just my 25 cents. As I stated previously, this as passed on for your info and thoughts. I don't have any comments or opinions due to my lack of knowledge of the topic. My problems were the opposite for a while. At one point I could SIT on the john for 15 min.to get rid of 1 to 2 oz. Thank goodness that's over. Tom > > I attended an US Too gathering Tues. evening where the primary topic was > > incontinence with an interesting presentation by a physical therapist. [quoted text clipped - 24 lines] > > Just my 25 cents. My surgeon and I taled at length yesterday about my progress -- and lack thereof -- and he was VEDRY surprised, and puzzled, when I said I perceived no continence progress over the 9-10 weeks since my surgery. I'm almost completely dry sitting or lying, even if my bladder is full and I need to pee. That's the good part. But if I'm standing I'm peeing, even a minute after a total void. Whether my bladder is fairly full or recently emptied, I'm dripping and often squirting while standing, as though my kidneys are plumbed directly to my diaper. Others here have described their problem in this way, too. But my doc was amazed, especially when I said I can shut off a strong stream instantly, on command, put it away, and walk away to finish the job later if I wish (an urgent phone call, for example) -- yet can't stop the dribble. He said he had not experienced this with any other patients before, and has no solution other than keeping up the Kegels -- ten 10-second reps every hour. Does this scenario sound common? I.P. I noticed the same thing in my progress. As soon as the catheter was out I was able to stop and start my flow, no dripping lying down or sitting but not true standing or walking. Gradually it started improving, to the point where at around 6 weeks I was able to stop wearing the pads. I would bet based on your description that you will improve too, it may just be hard to notice the progress on a day to day basis. It took me 8 months before I could do away with the pads. And even yet, if I kneel wrong I feel myself squirt a little. I cannot hold it back. But atleast it is not enough to soak through. I just have to be constantly aware how I kneel and which position to avoid. It is frustrating knowing it is leaking and cannot do anything about. Actually, you may be over doing the Kegels and making the sphincter muscle tired. I was told to do Kegeks twice a day. Hope things start drying out for you soon. MrBill age at diagnosis 48 PSA 1.4 Gleason 3+3=6 T2c 12 cores, 5 right positive, 1 left positive robotic RRP 12/15/03 Post-op Pathology G7(3+4) PSA 4/2/04, 7/8/04, 10/11/04 = <.1 pad free 8/15/04 age 49 I'm coming up to 3 months RPP, Like IP I'm dry laying down and sitting. i'm usually dry moving around up to midday. When I go for a walk late afternoon, I pee before and after and are usually dry for the 20minutes walk. I prepare dinner for my working wife and usually dribble on and off while moving around. Last night I went to a resteraunt for dinner, drank quite a bit of wine and actually had urine running down my leg by the time I walked to the car (500 yards), not nice! I'v only ever used womens Libra pads, usually 4 or 5 for 24 hours. I was doing Kedgels 10 sec x 10 times , three times a day or more but a phisiotherapist lady who did some work on my back yesterday, suggested squeezing VERY HARD when I do kedgels, and release gradually. She specialises in incontinence in women and suggested doing 3 sets x 10 seconds each sitting , lying and standing morning and evening. Also 50% lifting the pelvic floor while walking (which I sort of do, anyway). I get pretty despondent somedays, but other days I go all the day without needing to change my pad (although it has caught the odd dribble!). I'm hoping that things will gradually improve and I would ask anyone who has been there to cheer up IP and myself. Ronaldo For trips about town I use a Super Plus Depends underwear with a Depends Boost Liner. The liner (a hefty pad insert) is made to use in incontinence underwear; it traps urine until it gets full, at which point it passes the excess into the underwear. When I think the liner is about full, I'll go into the restroom, reach into my underwear, toss the liner pad away, and walk away with a fairly fresh diaper. And in case all that fails I always wear dark trousers so any leakage won't show. If I'm still going through diapers when spring rolls around and I live in shorts and swim trunks, folks will just have to get used to my legs being wet. I.P. > Last night I went to a resteraunt for dinner, drank quite a bit of wine > and actually had urine running down my leg by the time I walked to the > car (500 yards), not nice! > I'v only ever used womens Libra pads, usually 4 or 5 for 24 hours. I have similar unexplained leakage problems to those mentioned here. As some of you know, I'm roughly 17 months post-op and still leak enough to wear a pad for protection since I never know when I will leak. For instance, I get up in the morning with a full bladder, put on some clothes, walk around a bit, turn on lights, turn up the heat all with no leaking. I then go to the can delivering a full stream and completely empty my bladder as far as I can tell. A little later I'll shower and pee a little bit in the shower, dry off, shave, brush teeth, etc., put the last few drops in the toilet and then put on my clothes to start the day. I no sooner get clothes on and I dump out a squirt even after all the emptying. This kind of thing can happen most any time with or without a full bladder and it's just enough to cause me to still wear a pad even though it's mostly dry at the end of the day. I do have some stress incontinence but some squirts occur for no reason. Not a big bother but still ... Dave Perry > For trips about town I use a Super Plus Depends underwear with a Depends > Boost Liner. The liner (a hefty pad insert) is made to use in incontinence [quoted text clipped - 12 lines] > > car (500 yards), not nice! > > I'v only ever used womens Libra pads, usually 4 or 5 for 24 hours. There ya go. I can shut off the fire hose better than I can stop the dribble 60 seconds later. My doc's going to hear about you, as he says my situation is virtually unheard of. I.P. > I have similar unexplained leakage problems to those mentioned here. > As some of you know, I'm roughly 17 months post-op and still leak [quoted text clipped - 10 lines] > still wear a pad even though it's mostly dry at the end of the day. I > do have some stress incontinence but some squirts occur for no reason. You can add me to that list too. > There ya go. I can shut off the fire hose better than I can stop the dribble > 60 seconds later. My doc's going to hear about you, as he says my situation [quoted text clipped - 16 lines] > > still wear a pad even though it's mostly dry at the end of the day. I > > do have some stress incontinence but some squirts occur for no reason. Ditto here @ 20 mths. My uro says I am his worst patient in this respect. put my name on that list too. Pretty much exactly the same experiece as Dave Perry discusses. I'm 10 months post-op. Dave Dec 03 Age 51, PSA 10.8 Jan 04 Dx PCa T2a Gleason 5 Mar 04 RRP, post op path good, all contained May 04 cystoscopy & BNI now pi**ing like racehorse PSA June < 0.01 PSA Nov < 0.01 > Ditto here @ 20 mths. My uro says I am his worst patient in this respect. > Ditto here @ 20 mths. My uro says I am his worst patient in this respect. I suspect that Uros have a significant number of "worst" patient's on their lists. My Uro initially told me I'd be playing golf 3 months after surgery but might need a pad to catch the occasional stress squirt. At 6 months I told him that I lost every drop while playing golf. He expressed great surprise and began giving advise re how to handle it. I asked him if he played golf. "No." I explained the stresses involved in the golf swing and he began to understand. Point is: many Uros are out of touch with what's happening outside their office doors, IMHO. > My Uro initially told me I'd be playing golf 3 months after surgery but > might need a pad to catch the occasional stress squirt. At 6 months I told > him that I lost every drop while playing golf. I always wear a pad when golfing. I generally only squirt when I'm using a driver or a long iron. SRK SignatureProstate 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 (4 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50) non Illegitimi carborundum > > My Uro initially told me I'd be playing golf 3 months after surgery but > > might need a pad to catch the occasional stress squirt. At 6 months I [quoted text clipped - 3 lines] > I always wear a pad when golfing. I generally only squirt when I'm using a > driver or a long iron. Or fairway wood I assume. Par for 18 holes would mean about 14 drives, 11 long irons or fairway woods, 11 short irons and 36 putts. If you're a bogey golfer like many, add another 5 long irons/woods and 5 short. That's 30 squirts +/-. Last year I was still leaking while walking so that accounted for the rest. Hopefully this year I can do better. Interestingly, last year was also one of my better scoring years. Go figure. Cheers I'm a strange golfer. If I'm inside 150, more often than not, I could just add three. I rarely 3-putt. But, I'll be damned if I can get within 150 in 'regulation'. Every once in awhile, I have a decent driving day. That's when my short game goes to hell. SignatureProstate 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 (4 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50) non Illegitimi carborundum > > > My Uro initially told me I'd be playing golf 3 months after surgery but > > > might need a pad to catch the occasional stress squirt. At 6 months I [quoted text clipped - 18 lines] > > Cheers Ditto the above posts, add me to the list (18 mos. rrp). Fine, until extended walking then can't retain fluid in bladder + otherwise intermittent squirting long B4 bladder is full. I wonder if these problems aren't better thought of as "nerve" problems than "muscle" problems, and if so, that perhaps the unnecessary urination actually worsens things because it tells the nerves to go whenever you feel like it, rather than only when the bladder is fairly or somewhat full. Close to 18 months post RRP here. Path report good (next PSA tomorrow), but incontinence and impotence still persist. Recently I have observed an increase in the leakage. For a long time, almost a year, I have been using one to two pads per day. During the week, working at a desk, usually meant one pad lasted to bed time and I did not wear one at night. Now the second pad is almost a daily necessity and due to damp underwear I now use a pad at night. I do not remember reading any one else reporting losing ground like this. Has anyone had that experience, and, if you reported that to your physician, what were you told? I have sent an email to my uro, but no response yet. Hello Dave P. I see you and I are still in the same boat more or less. Have you investigated the artificial sphincter? I am starting to think seriously about that alternative. Checking insurance coverage now. Thank you. David S. > Ditto the above posts, add me to the list (18 mos. rrp). Fine, until > extended walking then can't retain fluid in bladder + otherwise [quoted text clipped - 3 lines] > worsens things because it tells the nerves to go whenever you feel like > it, rather than only when the bladder is fairly or somewhat full. Sphincters would normally be covered by insurance. My uro told me of one guy who became continent in 3 years. I don't believe the 18 month limitation idea. Over this time I have noted continual improvement, albeit irregular and slow. If you note the subtle improvements it is encouraging, and I think mine is on its way to "normalcy". Two thoughts: for those who haven't seen success with Kegels you might try very mild, long held muscle contractions instead of the short, hard ones as with Kegels. It may do a better job of training the nerves to do what they are suppose to do ("hold steady"). It has worked for me. I think the least amount of contraction you can (deliberately) make is best, since the muscle is easily overworked, and any contraction has the effect of increasing the muscle capacity over time. (Yes, I know I'm not a doctor, but the doctors don't seem to know the mechanism involved in regaining continence, so us "users" must fend for ourselves.) Second, COMPLETELY voiding may not be the best idea. I noticed that when you do this the nerves then think it should void when you only have a small amount of urine in your bladder. Plus, leaving a small amount of urine in there mimics what took place B4 the -ectomy - the prostate used to exert pressure on the urethra (kinda like what a sling does) and the bladder never fully emptied. So when I pee I stop when it starts coming out really slow. I think the "late comers" may be the ones that have more a problem with the nerves than the strength of the sphincter muscle (i.e., training the nerves to act like they should). I think Kegels confuse the nerves because the hard stop and start is not what you want the nerves to do, or cause the sphincter to do. Instead you want the nerves to cause the sphincter to exert a consistent, constant pressure on the urethra. I think you may have to "will" the nerves/sphincter to do what you want over the long term, but gently and consistently in a manner that doesn't upset the normal functioning of the nerves. Thus, if you have times during the day when you can concentrate enough to apply a very small and consistent contraction of the sphincter, this may be best, and you may see good results as I have. I wonder if Kegels aren't sometimes not successful because they overwork the muscles and confuse the nerves. > Close to 18 months post RRP here. Path report good (next PSA tomorrow), but > incontinence and impotence still persist. Recently I have observed an [quoted text clipped - 22 lines] > > worsens things because it tells the nerves to go whenever you feel like > > it, rather than only when the bladder is fairly or somewhat full. Motivated by a test requiring that I collect every ounce of urine for exactly 24 hours and enlightened by Tdub's insight that continence may be a training issue rather than Bowflex-level Kegel workouts, I've been dry all day except when pointed into the collection jug, despite drinking extra fluids and not bothering to go find the jug very often. You'd think ONE of the docs or books might have suggested that if we can do pushups with our Kegel muscles, continence might depend more on technique and concentration rather than on bulking up. I'm gonna be miffed at my doc next week if these three months in wet diapers were unecessary and due to lame instructions, considering that I could send Morse code with my firehose on the day the catheter came out. OTOH, I find it hard to believe that I can achieve this in a normal day on my feet. I.P. The less you THINK you need to pee, and the less you do pee, in the long run the less you will feel like you need to pee, and the less pee you will see. It's BRAIN over BRAWN. >Subject: Re: Incontinence-Losing Ground >From: "Tdub" gripshift5@email.com [quoted text clipped - 4 lines] >long run the less you will feel like you need to pee, and the less pee >you will see. It's BRAIN over BRAWN. You must be one of the lucky ones who recover continence rapidly.... ;-} No, really just the opposite. I'm 18 mos. post RRP but down to almost one pad a day (meaning almost not enuf in it to warrant changing it but once a day). But it took the better part of this period to finally figure out that it isn't force, kegels and raw strength that carry the day, but gentle, careful, concentrated coaxing of the mechanism to do what you want it to do. I probably would only have had a couple months of discomfort from wetness, and inconvenience of incontinence, instead of the 12-13 months I did have, if I had ignored the doctors advice to do "heavy" kegel exercises. >Subject: Re: Incontinence-Losing Ground >From: "Tdub" gripshift5@email.com [quoted text clipped - 10 lines] >of the 12-13 months I did have, if I had ignored the doctors advice to >do "heavy" kegel exercises. I was continent two years after surgery, without kegels or brain over brawn. Chemotherapy has made me -very- incontinent. > I was continent two years after surgery, without kegels or brain over brawn. > Chemotherapy has made me -very- incontinent. Uh oh. I expect to be starting adjuvant (no dx'd metastases, PSA 0.01 on Lupron) chemo (probably docetaxol[Taxotere]) fairly soon. I may await FDA fast-track approval of Phenoxodial, though, as it looks very promising. To answer any who are wondering, my first tumor was a Gleason 9 with PSA of only 5.7. Second tumor was Gleason 8, also with low PSA. This is not a good thing, and is reason enough for early chemotherapy. Anyhow, what's this about incontinence on chemo? Would Danny please elaborate? Thanks! Regards, Steve J >Subject: Re: Incontinence-Losing Ground >From: "David S." ButtercupsDad@dog.net >Date: 1/20/2005 12:18 PM Central Standard Time >Message-id: <csoslg$lj1$1@gargoyle.oit.duke.edu> No doctor here, but I can suggest... perhaps some change in diet or life style is relaxing your sphincter, or perhaps a bit of scar tissue is opening it a bit, or perhaps an infection. Hope for good news from your doc. >Close to 18 months post RRP here. Path report good (next PSA tomorrow), but >incontinence and impotence still persist. Recently I have observed an [quoted text clipped - 22 lines] >> worsens things because it tells the nerves to go whenever you feel like >> it, rather than only when the bladder is fairly or somewhat full. >>Subject: Re: Incontinence-Losing Ground >>From: "David S." ButtercupsDad@dog.net [quoted text clipped - 22 lines] >>Thank you. >>David S. My urologist told me of a patient of his that became continent following RP, but then later became incontinent. He asked the patient if he was still doing his Kegel exercises. The patient responded,"no". He then explained to the patient that it's important to do Kegels forever more in order to maintain continence. He further suggested that resuming Kegels should help him regain continence. However, that was 6 months ago, and I do not know if my urologist's advise was helpful to that patient. >>> Ditto the above posts, add me to the list (18 mos. rrp). Fine, until >>> extended walking then can't retain fluid in bladder + otherwise [quoted text clipped - 3 lines] >>> worsens things because it tells the nerves to go whenever you feel like >>> it, rather than only when the bladder is fairly or somewhat full. Do these guys want us to "Kegel" every standing moment? Noting else would help, since I (we?) can't perceive the almost constant dribble. When I'm pantsless, as in getting ready for a shower or changing Depends, the only way I can tell I'm dribbling is by the splatter on my legs and feet. What good's a Schwartzneggerian Kegel muscle if a) we can't tell when it needs a good scrunch and b) a good scrunch just squirts the dribble out with extra force? I.P. without knowing it "Denny D" <calliope248@hotmail.com> wrote in > > My urologist told me of a patient of his that became continent > following RP, but then later became incontinent. He asked the patient [quoted text clipped - 12 lines] > >>> worsens things because it tells the nerves to go whenever you feel like > >>> it, rather than only when the bladder is fairly or somewhat full. Before your operation, you body maintained closed Kegels every moment of every day, except when you were standing over a toilet. Now, you have to learn your remaining Kegel how to do that. Taint easy. SignatureProstate 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 (4 mo) 8/03 (48), 12/03, 4/04 (49), 09/04 (50) non Illegitimi carborundum > Do these guys want us to "Kegel" every standing moment? Noting else would > help, since I (we?) can't perceive the almost constant dribble. When I'm [quoted text clipped - 24 lines] > like > > >>> it, rather than only when the bladder is fairly or somewhat full. How's this for a hypothetical explanation? It explains what I'm experiencing and what I think I'm reading in this thread: The surgery injured a nerve that perceives leakage/dribbling, so by the time we feel a dribble reach the light at the end of the tunnel and we squeeze off a Kegel to stop it, some leakage has passed the Kegel point. Thus the Kegel just squirts that teaspoonful out rather than pushing it back upstream. We have to perceive the leakage before it reaches the physiological Kegel point (?) for the Kegel to have a chance at stopping it. And obviously much urine is just going straight from kidney to diaper without our perceiving it; I may perceive only a few little squirts in a 2-hour upright session, but my supersize diaper is already sagging. I've obviously not even felt most of the leakage. Surely we're not supposed to be in Full Kegel mode every standing moment? Does this sound like what you guys still wearing pillows in yer pants are experiencing? Bubley's new book sez we should be through with the diapers in three weeks, but I've seen almost zero improvement in 12 weeks: I can stop the firehose but often can't even feel the trickle. I.P. in my pillow > You can add me to that list too. > [quoted text clipped - 20 lines] > > > still wear a pad even though it's mostly dry at the end of the day. I > > > do have some stress incontinence but some squirts occur for no reason. > How's this for a hypothetical explanation? It explains what I'm experiencing > and what I think I'm reading in this thread: [quoted text clipped - 17 lines] > > I.P. in my pillow I think you may well be on target. I sometimes think I ought to fill my bladder first thing in the morning to get the early warning system working. My first pad seems to fill faster than the pad(s) I use later in the day. Obviously the full bladder is easier to detect than a small dribble. Others? It may be better to not pee when you don't really need to, even though it's convenient, and feels good, because doing so sends the wrong message to the nerves, which seems to be controlling the uncontrolability. |
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