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Medical Forum / Diseases and Disorders / Prostate Cancer / June 2004Incontinence question
Hello everyone. I have posted a couple of times before (new member), & now have a question re incontinence experiences. Briefly, 1st, i had RRP on May 20. Everything was negative...margins...lymph...bone...etc. Pathology report stated "very small cancer (just 25% of 1 apex core sample(out of 8 total) when i had the biopsy). When i had the catheter in, i would leak "extra-catheter", around the sides of it. After i had the catheter out, it was Depends for me...extra-absorbancy. I've been semi-compliant re Kegels, and have been trying to walk 1-2.5mi every day. I am STILL using 4 or so Depends daily. I have "some" control stopping an "almost exhausted" stream, if i contract my muscles enough. The worst is when i get out of bed in the AM, after allowing the bladder to fill during the night. When i stand up....wiz!!!...continuously! Still have no real control with a semi full-full bladder. I've got to wrap a towel around by thighs to catch the inevitible leakage that results, outside of the Depends, from the heavy flow. I now keep a towel by the bed so i have it in the AM when i get up. My question is...what are the incontinence experiences of post RRP men?... I (obviously) get jealous when i read of guys who "2 weeks later have 95% continence", etc. That sure isn't me!! Of course, i DO read the posts of guys who are 9-10 months out & still having continence problems.Obviously, again, i prefer not to think of that possibility. Is it "normal"...for MOST guys (post RPP)...to have a 2-4 Depends a day problem? How long, as a generality is still "within normal time limits"? I just, maybe, need some support here, to know that maybe 6 months out or so is NOT really a long time to wait for full control/contincnce. Lastly...I am on Detrol 4 LA, have no coffee/diuretic intake of anything, & drink a good amount of water during the day. I would like to thank any/all who reply, for the kindness of their replies. Respectfully Jerry R *Hello everyone. Greetings! * I've been semi-compliant re Kegels Try being fully compliant and see if things improve. I'm mostly dry all the time, except for when I drink alot of water not long before bed and sleep very deeply, then it's puddle city in bed, which is a major annoyance. And occasional leaking due to physical stress, hard laughing, and such. Al Please be quiet if replying via email, flames will be deleted promptly. I won't even read the whole message... > Hello everyone. I have posted a couple of times before (new member), & now > have a question re incontinence experiences. Briefly, 1st, i had RRP on May [quoted text clipped - 28 lines] > Respectfully > Jerry R In Guide to Surviving Prostate Cancer, Walsh says that, at Hopkins, half of all men stop using pads by three months, and almost all do by one year. So it is still early for you. I was fortunate myself and was continent within a month of the catheter coming out. But this is highly individual, and it is my impression that progress can be very uneven. So continue with your walking and Kegels and be patient. Hi Jerry. No control at all for a couple of weeks, then gradually returning to where I was in pretty good shape after 90 days. You should not be drinking any extra water any more, unless the doctor has advised it for some reason. According to the instructions I got, once the catheter comes out the patient should return to the consumption of a normal amount of liquids. Don't get discouraged. Jim Hi Jerry, I had my RRP on March 29th so I'm about 7 1/2 weeks ahead of you and 1 1/2 weeks from the magic "3 months" Walsh cites as the point where "almost" 50% of men are dry. For the first month I was 100% free flowing. I probably went through 6 to 8 "man pads" per day. Yesterday I made it through on 3 1/2. I'm sure at some point begin to see progress. My advise is to do your Kegels more regularly. Cut your water intake to what Walsh calls "sparingly." I interpret that to be about 6 8 oz. glasses per day. The old advise to drink 8 glasses has been all but proven to be a myth. A Google search will show that in the 40s the government recommended 8 glasses but included the water in food you eat. They noted that even bread contains 34% water. Somehow modern wisdom dropped this part of the regimen. Lastly, before you hop out of bed in the morning, reach inside your Depends and apply the human clamp. Wash your hands well afterwards : ) Best of luck! Don > Hello everyone. I have posted a couple of times before (new member), & now > have a question re incontinence experiences. Briefly, 1st, i had RRP on May [quoted text clipped - 28 lines] > Respectfully > Jerry R Jerry, I had my surgery on May 13 so today represents 5 weeks. When the catheter came out I was about 80% continent and today consider myself to be about 95%. I still wear a pad because there are times when I simply can't get to the bathroom quickly enough and still dribble a little. I use a pad at night because there seems to be a little less control there -- about 80%. Of course, exercises are mandatory as they do help to get control over the single remaining sphincter muscle. The key is to get that control to be as automatic as it was pre-surgery, and that simply takes time, training and exercise. Hang in there -- my father spent about six months before he was happy with his control. Ed Hello out there!! Although i mentioned a "thanks to all repliers" beforehand, i feel that i would like to just say again...THANK YOU, my friends, for the input. I value all the responses & am thankful for the time you took from YOUR schedules to answer me. All the best!!!.....Jerry R > Hello everyone. I have posted a couple of times before (new member), & now > have a question re incontinence experiences. Briefly, 1st, i had RRP on May [quoted text clipped - 28 lines] > Respectfully > Jerry R Jerry, I'm 14 weeks post-RRP and it's only in the past few days that I've started to notice a significant improvement. Like you I have only been semi-comliant with the Kegels (when I remember, but usually at least twice a day) and have not been drinking tea/coffee and drink plenty of water as advised by a physiotherapist (incontinence specialist that I was referred to). I have been using 3-4 pads a day and more if I have a particularly active day. The past week I have used 1-2 pads during the day and one at night which is a major step in the right direction. My doc told me that the incontinence rates were 30% of patients were dry at 3 months, 60% at 6 months and 90% at 9 months, so I guess we're not doing too bad. I too read with envy about the guys who were completely dry as soon as the catheter was out. I guess I can't offer you anything other than encouragement to keep positive in the knowledge that it will eventually improve. We have a TV ad here in Oz (for a totally unrelated product) that says something like "it won't happen overnight, but it will happen", comforting words. I've also had a few treatments of accupuncture so not sure if that's responsible for the improvement or just the time out from the op, who cares? In a few months this will be a distant memory and you can get on with the rest of your life - cancer free! Hang in there. Dave Why don't you keep a bottle or plastic urinal next to the bed. Put the "hose" in the bottle BEFORE you get up. -MIKE Thank you, again, my friends, for the 2 additional responses. You know, i "thought of" having a urinal/bottle near the bed, but somehow the idea wound up in the Twilight Zone. I think i WILL do that tonight, for the morning. Perfect case of "We have met the enemy, & he is us!!". I hope that at 14 weeks, i also will see a major decrease in Depends use. I guess that one way or the other, we all live by the clock. It's a curse sometimes!! I wish you well!!.....Jerry R > Why don't you keep a bottle or plastic urinal next to the bed. Put the > "hose" in the bottle BEFORE you get up. > > -MIKE hi jerry - i had to something to email but it bounced at this addy. if you will give me your addy, i'll send it to you. ~ curtis knowledge is power - growing old is mandatory - growing wise is optional "Many more men die with prostate cancer than of it. Growing old is invariably fatal. Prostate cancer is only sometimes so." Jerry, My RRP was 12/15/00. My cath romoval was 01/02/01. My first day back to work was 01/26/01. It was on that day that I discarded my diapers and started using pads. I was using pads for another 6 months.  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 PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .07 .05 Lupron 7/03, 8/03, 12/03, 4/04 > Hello everyone. I have posted a couple of times before (new member), & now > have a question re incontinence experiences. Briefly, 1st, i had RRP on May [quoted text clipped - 28 lines] > Respectfully > Jerry R Gerald, It seems you've gotten a lot of replies to your question, and all of them seem (to me) very valid. If I may, I'd like to chime in with a few thoughts. *Don't be discouraged by the successes of others over YOUR personal struggle. EVERYONE heals differently. Age, physical makeup, etc.....all impact ones own recovery. *As was mentioned in several other posts....relax, it's really too soon to expect full (or ANY) continence at this point. I know it's a pain in the neck, but resign yourself to incontinence for awhile.....maybe a LONG while. BUT you'll heal.....and healing for one sometimes takes longer than for another. *Keep up the work, and keep up the attitude that YOU are going to beat this.......Get pissed off (sorry, no pun intended), but use that to your advantage! Be determined in your recovery. *Talk with your physician regularly. If you REALLY believe your recovery is not going as well as it should, tell your Doc. Perhaps he might have some added suggestions. Gerald, I really believe you will soon be posting how you're doing so much better and that things are looking up. It sometimes takes time, my friend....there are no checkpoints. (And the post about the "human clamp"? That's what worked for me!!) jh > Hello everyone. I have posted a couple of times before (new member), & now > have a question re incontinence experiences. Briefly, 1st, i had RRP on May [quoted text clipped - 28 lines] > Respectfully > Jerry R ... > My question is...what are the incontinence experiences of post RRP men?... ... RRP was the past January, so I'm past 6 months. Never had much flow, and quickly went to a couple of pads a day. Now I'm still using one/day, but sometimes it's mostly dry. I'm not ready to be without a pad at work yet. I also wear one when I run. I run a lot - 30+ miles/week. It seems to make me leak a little more than just standing. I don't use one at all overnight. As you noted, standing is much more likely to produce a "leak" than lying down. I haven't been too religious about Kegels, but I do them sporadically. You hear from some guys that it doesn't make a lot of difference. I figure it can't hurt to do them. SignatureWake PSA 3.8, 11/2003 @58yrs Biopsy positive 5% in 1 of 10 cores T1c Gleason 3+3 RRP 1/12/04 Pathology agreed with biopsy + Negative margins PSA - 4/29/02: <0.1 My sincere thanks again, for your responses. I have read them all carefully. Just wanted to acknowledge your kindness. All the best! Jerry R > ... > > My question is...what are the incontinence experiences of post RRP men?... [quoted text clipped - 11 lines] > hear from some guys that it doesn't make a lot of difference. I figure it > can't hurt to do them. "gerald rubackin"wrote... > Hello everyone. I have posted a couple of times before (new member), & now > have a question re incontinence experiences. Briefly, 1st, i had RRP on May > 20. Everything was negative...margins...lymph...bone...etc. Pathology report > stated "very small cancer (just 25% of 1 apex core sample(out of 8 total) > when i had the biopsy). I'm a month ahead of you. My RRP was on April 14. > When i had the catheter in, i would leak "extra-catheter", around the sides > of it. After i had the catheter out, it was Depends for > me...extra-absorbancy. I've been semi-compliant re Kegels, and have been > trying to walk 1-2.5mi every day. I am STILL using 4 or so Depends daily. Interesting that I haven't seen the leaking around the sides of the catheter mentioned more often. I was very concerned that it happened extensively while I had the Foley in. When I went back to the hospital to have the catheter checked, no one said it was a common problem. I was also concerned that I had close to zero control when the catheter came out. > have "some" control stopping an "almost exhausted" stream, if i contract my > muscles enough. The worst is when i get out of bed in the AM, after allowing [quoted text clipped - 3 lines] > inevitible leakage that results, outside of the Depends, from the heavy > flow. I now keep a towel by the bed so i have it in the AM when i get up. I was surprised to find that starting at maybe week 4 post-op, I was completely dry while sleeping. I also had varying degrees of leakage as soon as I got on my feet. This leakage got reduced considerably by maybe 8 weeks post-op. I also have been "semi-compliant re Kegels." Due to an oversight in the hospital, I did not get one of the pre-op handouts that suggested starting Kegels before the operation. Therefore I didn't start doing them to any significant extent until the catheter came out. > My question is...what are the incontinence experiences of post RRP men?... I > (obviously) get jealous when i read of guys who "2 weeks later have 95% > continence", etc. ........ Everyone is different. I first gained control while sleeping. I sometimes did pretty well while standing or walking. Sitting was a real problem. Some sitting positions resulted in continual leakage. Getting up from sitting caused significant spurting. Starting at about 8 weeks post-op, control started improving dramatically. I'm still saturating the Extra-Plus pads, but in the last few days, there have been more frequent episodes of making it to the bathroom with a full bladder. I'm also noticing better control while sitting. Yea!!!! This rapid advancement that I have made in the last few days is very encouraging. My control is still very intermittent, but I see the light at the end of the tunnel. I returned to work at 4 weeks post-op. For added insurance I have been using high absorbency pads inside depends underwear and have been thankful I had the second layer in a few instances. Judging by my recent gains, I hope to graduate to shields before long. Again, everyone is different. Good luck Jerry. I wish you a rapid conquest of this affliction. -Al |
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