Medical Forum / Diseases and Disorders / Prostate Cancer / February 2008
Incontinency Question
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J. O' Connor - 18 Feb 2008 04:28 GMT On the 21 January I wrote:
"After removal of the catheter, that day and the next, it was as if someone opened the tap and forgot to close it. Day three - 5 pads, day four - 4 pads and today I think I will be managing with only two pads."
Well, unfortunately I celebrated too early. Now that I am back to my usual busy live routine, I am lucky to make it through the day with seven to eight very full dripping pads. I am o/k in the morning but from noon onwards it just runs straight thru. It is now just under four weeks since the removal of the catheter and there is no detectable improvement. I spoke to the Uro Nurse and she told me that although I had all my nerves spared, it is early days and not to despair. Yet I detected surprise when I told her of my status. She wanted to send me to a Physiotherapist to check if I am performing the exercises correctly...I declined as I did not think that throwing money at a Physiotherapist would teach me anything new. Heck, it is not rocket science to do Kegel.
I followed the survey on this newsgroup about the 'long term' outcome of others, but would love to hear when you started to see an improvement. Was it after 1, 3, 6 or more month after RLRP? Am I to optimistic to expect a quicker reduction of incontinency?
Best wishes, John from Australia
2006-3.4 3/2007-6.3 7/2007-6.7 8/2007 Biopsy: (40%)of one core = Gleason pattern 3+3=6, Stage T1. 12/2007-5.8 15/1/2008- RLRP of 54 gram. 3+4=G7,T3a. Perineural invasion + small focus of extraprostatic extension. Clear margins.
I.P. Freely - 18 Feb 2008 05:27 GMT > I would love to hear when you started to see an improvement. Was > it after 1, 3, 6 or more month after RLRP? Am I to optimistic to expect a > quicker reduction of incontinency? It's been >3 years now, so recollection is hazy, but I was still flooding at least two, often three, of Depends' big diapers each day a few months after my RP, which took one nerve bundle. I'd guess I graduated from diapers to pads after something like 6 months, then gradually tapered from several pads a day to my present 1-3 triangular pads a day.
Except while windsurfing, when I'll overflow a giant diaper in an hour inside my dry suit. I relish midsummer, when I can just wear swim shorts and ignore the quarts I leak in a long hyperactive day. In more controlled exercise such as hard gym workouts, I seldom leak more than an ounce or three in a few hours. I've done my Kegels faithfully now for a month with no obvious improvement; if at three months I'm not drier, screw the Kegels.
Some references say I'm wetter than statistics would predict, but the post-RP continence specialists I consulted said I'm leaving s trail right down the middle of the Continence Highway, where Your Mileage May Vary.
I.P.
J. O' Connor - 18 Feb 2008 05:59 GMT Thanks I.P. I value your input. John
rosbif - 18 Feb 2008 12:13 GMT > I am o/k in the morning but from noon onwards it >just runs straight thru. >It is now just under four weeks since the removal of the catheter and there >is no detectable improvement. I'm no authority on this but I believe you've plenty of healing prospect ahead of you - my uro told me that things would be pretty messy inside for the best part of 6 months and up to a year before best outcome could be appraised. My intuited image of a post-op sphincter is of a valve which has been pulled this way and that, slowly trying to bed-in to altered geometry, clogged up with dried blood, scabs, scar tissue and who-knows-what. I don't want to pump up your expectations, but I do think it's far too early to assume you're at your best, or even anywhere near it. Kegels were causing me quite a bit of soreness in the rectum so I gave up on those, continence improved naturally over time. Good luck.
Jim - 18 Feb 2008 20:05 GMT John,
I had my RP about four weeks ago with somewhat similar post-op pathology to yours (Gleason 7 (3+4), T3a, three small areas where the cancer was at the edge of the prostate). I had a little trouble healing the anastamosis so I had to keep the catheter for 19 days. That finally came out a week ago today. The nurse said I should stay in the clinic until I had either soaked a couple of pads or was able to use the men's room. I drank 40 oz. of water and an hour later I stood up to go to the bathroom and my bladder immediately emptied into the pad. It was like a garden hose turned on high! Luckily we brought lots of pads and a change of clothes! I used 8 pads in the half day after the catheter removal.
I was down to four pads the second day with some apparent control resuming the Kegel exercises that I did for months before the surgery. The next two days I went back up to 8 pads/day. My wife pointed out that I had been drinking a large glass of cranberry juice with lunch each day and that cranberries are a natural diuretic. The combination of 80 oz of water a day and the cranberry juice made me pump out a gusher of urine! I now recall that my urologist recommended drinking cranberry juice years ago when I had a bout with kidney stones. He was trying to encourage urine flow and that's certainly not my problem now!
Anyway, I've skipped the juice since Friday and now soak 3-4 pads/day mainly when I'm physically active. I actually made it through the night Saturday and Sunday with only minor wetting. Maybe things are starting to come under control but I do still leak pretty consistently during the day! Don't give up! I'm not planning to!
Regards, Jim
> On the 21 January I wrote: > [quoted text clipped - 31 lines] > of > extraprostatic extension. Clear margins. djperry42@sbcglobal.net - 18 Feb 2008 23:37 GMT It's been close to five years since my catheter was removed and right off I flooded the pads from day one. I noticed a gradual reduction from five or six pads per day to four then three over a period of about six months although my memory is a bit fuzzy on this. Unfortunately, I can still fill three pads per day even now although it requires some activity such as gardening or walking to leak more or less continuously. If I sit on my arse the whole day and go to the can every two hours I can get by with one pad which is more soaked from perspiration than urine. Surprisingly, I don't leak at all with a full bladder. Once I have my morning draining though it's leak, leak, leak the rest of the day. Hopefully, you will have a nice steady pad reduction over the next few months down to one or none. You can do the Kegels, they won't hurt but if I had a nickel for every Kegel - - -. I think they are of value for stress incontinence such as occurs with a sneeze but worthless frequent dripping I experience. Good luck. Dave Perry
> On the 21 January I wrote: > [quoted text clipped - 29 lines] > 15/1/2008- RLRP of 54 gram. 3+4=G7,T3a. Perineural invasion + small focus of > extraprostatic extension. Clear margins. David&Joan - 19 Feb 2008 01:55 GMT Dave has a good point. Kegel's are useful to control stress situations: standing, sitting, lifting, etc. You first consciously use them and later unconsciously do it. But they seem to have no value in controlling routine leakage. It seems that the remaining sphincter needs to be retrained to do its new job continually. And it is equally true that a fullish bladder rarely leaks. I think that the sphincter is somehow reminded of its new duty when the bladder is full.
And for what its worth, an orgasm will almost always cause a leak if there is anything in the bladder, even for the driest of us. Why? I suspect that the sphincter downstream of the prostate (the one that is left after surgery) is not designed to block flow during and orgasm. Otherwise how could semen get through? It is the sphincter at the base of the bladder that was designed to do this job, and it doesn't exist anymore.
But if you can now make it through the night, then you are on your way to full control during the day.
David
I.P. Freely - 19 Feb 2008 04:27 GMT > if you can now make it through the night, then you are on your way to > full control during the day. I almost never leaked sitting or lying down, but that apparently has almost no predictive value for upright continence.
I.P.
djperry42@sbcglobal.net - 19 Feb 2008 21:27 GMT > > if you can now make it through the night, then you are on your way to > > full control during the day. [quoted text clipped - 3 lines] > > I.P. I too never leaked from day one while lying or sitting. Looking at the geometry of the plumbing and how the urine pools at the back of the bladder, not the bottom, makes being dry while lying pretty apparent. As for sitting, I think there is some pressure applied to the urethra that is just sufficient to pinch things off a bit. For me, standing offers a direct and open line to the exit. Dave Perry
Peter - 19 Feb 2008 02:30 GMT Hello John,
My RLRP was on Oct 13, 07 and it was not for at least 6 weeks that I noticed any difference during the day. At night around the 6 week mark I was able to stay dry. Improvement came around 8 weeks and it was a very noticeable. I am now (17 weeks) almost completely dry during the day except for a small leak when lifting, coughing or other "stress" factors. Check out: http://palpable-prostate.blogspot.com/2007/02/post-rp-urinary-incontinence.html
find the graph and note the steep curve.
Best of luck down there... also down in Australia.
> On the 21 January I wrote: > [quoted text clipped - 31 lines] > of > extraprostatic extension. Clear margins. J. O' Connor - 19 Feb 2008 23:05 GMT Thank you all for sharing your experiences, your comments and links. I have found them very comforting and helpful Obviously, my too optimistic expectations (fuelled by my uro's pre-operation sales talk) have to be adjusted to reflect reality and a more patient approach implemented. I have not socialised (going to restaurants ect. with friends) since my operation, as the feeling of having urine running down my legs from an over-full pad would not conform to the ambiance. On my internet travel I came across and ordered a gadget called 'SqueezerKlip'. Its purpose is to close of the urethra without disturbing the blood circulation to and from the penis. I am waiting for it to arrive any day now and if it works, will use it only in situations like socialising, shopping, long travel ect. Has anyone heard / used of this gadget? How did you find it? Did it work for you?
Again "Thank You" again to all who contributed to my thread.
Best wishes, John from Australia
2006-3.4 3/2007-6.3 7/2007-6.7 8/2007 Biopsy: (40%)of one core = Gleason pattern 3+3=6, Stage T1. 12/2007-5.8 15/1/2008- RLRP of 54 gram. 3+4=G7,T3a. Perineural invasion + small focus of extraprostatic extension. Clear margins.
I.P. Freely - 19 Feb 2008 23:55 GMT > I have not socialised (going to restaurants ect. with friends) since my > operation, as the feeling of having urine running down my legs from an [quoted text clipped - 5 lines] > Has anyone heard / used of this gadget? How did you find it? Did it work for > you? Here's my take on the ActiCuf http://www.gturological.com/index-4.html version of the SqueezerClip, sent to my uro and to the ActiCuf's manufacturer. (Realize that these devices hold only an ounce or three, wheras a Depends diaper will hold cups and can be boosted with Depends booster pads.)
Test report on the ActiCuf incontinence pouch, as posted by me on alt.support.cancer.prostate:
First impression out of the package: Nice, small, flat, low-profile; it’s going to hide easily. It’s a soft, light, flat, paper, squeeze-mouthed, coin purse. There’s no thick foam padding like what I expected, and it takes some serious squeeze pressure to open it; clamp it on two stacked fingers and it feels TIGHT! If you think I’m sticking THIS into THAT and releasing the bear trap, you’re nuts. I want to catch any stray dribble, not cut off circulation and, ultimately, what’s left of my manhood. But what the hell … the website says it’s comfortable, and we KNOW websites don’t lie. So after a couple of stiff belts, I squeeze the bear trap open wide, insert all the way, take a deep breath, release the bear trap slooooooowly, and … holy cow; I don’t feel it at all. It’s all in the geometry of the “bear trap”; it can exert a lot of “pinch” pressure when wide open, but the pressure isn’t even noticeable down at operational range. And I’m guessing most guys needing these things only THINK their operational, slightly compressed diameter is going to challenge it. Bottom line: BEYOND comfortable. In fact, I couldn’t even feel it a minute after clamping it on. No, it didn’t leave me numb; it just didn’t pinch.
Slip test: If it’s that comfortable, won’t it slip off accidentally if it gets heavy with leakage? Tug … tug … yep, it sure could … but only if you plan on carrying a pint of urine in that 3-ounce pouch while you go jogging. It takes some serious tugging to get it to slip AT ALL – nothing you’d ever experience unless your family dog gets a good grip on it – and even when it does slip, there’s no discomfort at all. This thing is SECURE. Ånd, LORDY, but it feels good to get back into boxer shorts!
Blood circulation test: Now, it’s great when a penis fills to the bursting point with blood; everybody involved enjoys it … unless it doesn’t empty when the time comes. If this pinching action lets blood in but not out again, we have a problem, Houston. So let’s give it the acid circulation test now that I’ve had it on for an hour or so: give the business end a goose to test its senses ... strictly as a clinical circulation test, I swear: OOOOOH … that felt GOOD! It passed that test, too ... and I’ll be back in a few minutes.
The Potty Test: Ya squeeze the clamp, remove the pouch, take care of business, reverse the procedure, and walk away. Anyone who notices in a public restroom is watching WAY too closely. Three hands would help (you’re holding three things unless you’re sitting down), but it works fine with two. And it’s small enough to conceal adequately with your hand if you walk over to the trashcan to throw it away. If even that’s not discreet enough for you, just use a stall.
Wear test: I’ve worn it for several hours in my first trial, including a moderate exercise and physical therapy routine with extensive stooping and bending. Once again, I forgot I was wearing it. If the instructions didn’t say not to wear it to bed, I would have. It may as well not be there, it’s so comfortable. What else can I say?
The leak test: Most of my leaking is in the evenings, standing around doing nothing. Frequent very small squirts, just enough that I need a little absorbency. Pads provide that, but provide no assistance in preventing the leaks. The modest squeeze of the Cuf assists a little in detecting and averting these small leaks.
The ultimate test: The Gym. Today it went to the gym for my triweekly, four-to-five-hour, full-tilt, non-stop, gut-busting workout involving most types of equipment in a HUGE gym. (Darn RIGHT I took a diaper in my gym bag as backup, but I had no need for it.) Once again, I forgot I was wearing it … until I dropped trou in the locker room: “So what are YOU staring at, buddy? Here … catch!” ;-)
Or maybe you could scream, “AAAAAAGH! What the hell’s THAT?” (Paint some little beady eyes and glue a little fur and a tail on it if you want to try that one.) Or just surreptitiously remove and discard it with a wave of the hand, as I did; it requires much less explanation.
And finally the street test: how obvious is the Cuf? Anyone who can spot this device in a pair of slacks or shorts is looking at my crotch WAY too closely. It’s just not visible . . . unless, of course, you’ve oriented the bear trap fore’n’aft rather than sideways, which is likely to trigger all sorts of commentary, partly because this gadget’s pretty small.
Unless you guys can think of something I missed, I rate this the ActiCuf a 9.5 in performance (if it had PREVENTED leaks with its pinch action, as its instructions almost imply, it would have gotten a 10). It definitely would not have worked in the days when I was completely flooding the Depends Tsunami model 2-3 times a day, but it’s neither intended nor advertised to handle major incontinence. But at $5 EACH -- 10 times the cost of a 24-hour diaper and 20 times the cost of a pad -- you’d better have a really, really good motivation to avoid pads or diapers.
Let’s compare the ActiCuf directly with its competition. What advantages does it have over pads or diapers? Easier and more discreet than pads or diapers to change and dispose of. (Try cramming a diaper in a restroom fliptop trashcan without self-consciousness or touching the lid!) Dryer than pads or diapers if you don’t overfill it. I could wear one ActiCuf now for 24 hours in comfort and confidence as long as I check it whenever I go to the bathroom. (It turns pale blue when damp with urine, so you have some degree of indication how you’re doing on the current refill.) Speaking of confidence … most pads have a fallout risk; these don’t. Wherever you go, it follows, unlike a pad which demands your presence front and center to do any good. And speaking of comfort … these are certainly more comfortable than diapers, and even more so than pads since pads require Jockey shorts. BOXERS RULE! It doesn’t show beneath your clothes, as diapers may. No more sweaty groin in warm weather or rooms. You can carry a few of these in any pocket unnoticed; they’re far less bulky than packaged pads.
ActiCuf disadvantages? A TINY bit more hassle at the urinal until you master the one-handed abra cadabra (you’ll master it in two days). In the locker room I just turn my back to others, but it might pique your cell-mate’s attention in jail. Five bucks a pop – 10 times the cost of a diaper and 20 times a pad’s cost.
Unless you’re totally satisfied with less expensive pads in every scenario you face, this Cuf is a great addition to your arsenal. I think it’s a wiener … er, a winner … if you ever wish to pay $5 for any or all of that impressive list of advantages for an hour or a day. But I’m guessing the price of these great products will come down when demand increases, as I’m sure it will. They WORK!
I.P.
J. O' Connor - 20 Feb 2008 01:49 GMT Thank you I.P. Loved your descriptive and humorous test and critique of the ActiCuf. I viewed the website and unfortunately, as I am at the flood rather then the dribble stage, feel that it is not suitable. Perhaps later and I did save the web address.
The gadget I ordered works on the principal of squeezing the urethra shut while it is on. (Another bear trap? smile) No absorption or reservoir at the once only cost of US $95.00. http://www.squeezerklip.com/
I'll let you know if it works when/if I receive it. Best wishes, John
I.P. Freely - 20 Feb 2008 02:35 GMT > Thank you I.P. > Loved your descriptive and humorous test and critique of the ActiCuf. I [quoted text clipped - 5 lines] > while it is on. (Another bear trap? smile) No absorption or reservoir at the > once only cost of US $95.00. Be aware of the precautions for penile clips. They also clamp off blood flow, squeeze nerves, and, with recent surgery, counteract our continence recovery efforts.
I.P.
J. O' Connor - 20 Feb 2008 04:05 GMT Thank you for your warning I.P. Do you base your statement on actual test based facts or is this your opinion?
Best wishes,
John
> Be aware of the precautions for penile clips. They also clamp off blood > flow, squeeze nerves, and, with recent surgery, counteract our continence > recovery efforts. > > I.P. I.P. Freely - 20 Feb 2008 04:49 GMT > Thank you for your warning I.P. > Do you base your statement on actual test based facts or is this your [quoted text clipped - 7 lines] >> flow, squeeze nerves, and, with recent surgery, counteract our continence >> recovery efforts. I encountered those comments when looking up the SqueezerKlip and ActiCuf sites and penile clamps in general (they've been around since at least the 1800s). In particular part ...
From http://www.renewintimacy.org/pdfs/UIbookSample.pdf :
"Usage Considerations, Instructions, and Precautions PLEASE READ THIS SECTION CAREFULLY! Follow all instructions carefully to avoid injury or leakage. Clamps must be released every 2–4 hours to empty the bladder. Allowing urine to remain in the bladder for prolonged periods increases the risk of urinary tract infections. Do not use a clamp in conjunction with other incontinence devices (except absorbent pads), with indwelling catheters, or with implanted penile prostheses. Contact your doctor immediately if any swelling, bruising, discoloration (change in color), or sores develop on the penis while using any clamp. In many cases some simple adjustments and additional practice using the clamp will alleviate the problem. Do not use near open sores. After sores are completely healed, the clamp may be used again. Patients with altered mental status should not be allowed to wear a clamp. Do not hesitate to contact your physician if you have any concerns or questions about using a clamp. If a clamp is not properly positioned, secured too tightly, or left on too long it can cause swelling, bruising, and ulceration (sores) on the penis. If these signs are ignored, deep tissue necrosis (destruction of the tissues inside the penis) may occur; this damage cannot be seen. Because of these potential complications, doctors and other health care professionals may be hesitant to recommend clamps to their patients. Not only are they concerned, and rightly so, a
And there it ends. For more, we must buy the book it's from. But you get the gist: putting meat, blood vessels, nerves, skin, the urethra, etc. in a clamp requires precautions.
I.P.
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