Water, Water Everywhere! The Pads aren't enough

Travelingman

I have been up since 5 am cleaning up the mess from my first night after the catheter was removed. I'm a little disheartened as I read here on the forum that most of you guys used about 4 pads a day right after catheter removal. I must have gone through 10 of them. Then last night, the pad just didn't cut it. I'm using the Depends pads. So here are my questions. How was your first day with the pads? Did you use anything different than the pad overnight? What did you do to prevent rashes from all of that urine? What time should I stop drinking liquids? Should I just start drinking Scotch till I don't worry about these things? (OK, the last question is a joke, but I'm not laughing). When do things start getting better? I was able to produce a stream for a couple of seconds yesterday but mostly urine flows when I stand up from sitting etc.
_________________
PSA 18, Gleason 3+3+6, Age 58, Rising PSA since 1999, Biopsy 5% of one core
Robotic surgery 10/26/09 T2B Tumor 30% of prostate involving left & right lobes NOMX Gleason 3+4=7 Urethral Resection margins & resection surface clean Seminal vessicles clean

PositiveGuy

Yiour experience is certainly different than mine. On the day of the catheter removal, I was leaking quite badly on the way home from the hospital ( three hour drive), but after commencing the Landry Protocol exercises, I got through the first night without leaking while in the bed and was able to get to the toilet without leaking during the night. I could hold the urine in while walking to the toilet and there was a strong steady stream. It happened three times that night and has been the same ever since and I am now 3 weeks post-catheter. I am down to one pad per day and am getting control of standing and walking now.

We are all different and I am sure that your circumstances will improve with time. Keep doing the exercises and hang in there.

Regards,
Bill
_________________
Age 64. Diag. 01/09 PSA 5.6, Gleason 3+3=6, T1c TRUS biopsies of prostate left adenocarcinoma of prostate involving part of 1/4 biopsy fragments, less than 10% of the surface area involved, CT scan clear. RALP - 09/29/09, back home 10/02/09. Pathology - 10/14/09 Gleason Score 3+3 = 6 No positive margins. No Seminal Vesicle, Perineural, Lymphovascular or Lymph node involvement, and bladder neck cancer free.
10/16/09 - 3-4 pads a day, 10/31 2/day, 11/09 one pad/day
ED 10/16/09 - Zip, nada

Travelingman

[quote="PositiveGuy"]Yiour experience is certainly different than mine. On the day of the catheter removal, I was leaking quite badly on the way home from the hospital ( three hour drive), but after commencing the Landry Protocol exercises, I got through the first night without leaking while in the bed and was able to get to the toilet without leaking during the night. I could hold the urine in while walking to the toilet and there was a strong steady stream. It happened three times that night and has been the same ever since and I am now 3 weeks post-catheter. I am down to one pad per day and am getting control of standing and walking now.

We are all different and I am sure that your circumstances will improve with time. Keep doing the exercises and hang in there.

Regards,
Bill[/quote]

Bill, Thanks for the info. I hope it gets better. I believe you posted a link for the laundry protocol but I don't remeber where you posted it. Can you refresh my mind? Also, are you saying that you started the Laundry Protocol when you got home & that you saw results the same day you started them, ie when you got home from catheter removal?

Ray
_________________
PSA 18, Gleason 3+3+6, Age 58, Rising PSA since 1999, Biopsy 5% of one core
Robotic surgery 10/26/09 T2B Tumor 30% of prostate involving left & right lobes NOMX Gleason 3+4=7 Urethral Resection margins & resection surface clean Seminal vessicles clean

JohnRH · Regular Joined: 23 Aug 2009 Posts: 39 Location: Denver

Landry Protocol: http://cancerforums.net/viewtopic.php?t=14761&sid=7c87a10cebfd307910eb7a064f98b3c4

Better diaper brands: http://cancerforums.net/viewtopic.php?t=14799

Tips: Greatly reduce, or cut out, ANY caffeine. Stop drinking any liquids around 7pm (and don't "stock up" before that). Pee standing up when you can as it's easier to practice stop and start of stream while doing that. When I pee sitting down I tend to dribble almost non-stop.
_________________
DX 07/2009 with Gleason 4+3, PSA 4.1, age 63 1/2.
DaVinci RRP 09/2009; Gleason 3+4; Stage pT2c, NX, MX; neg surgical margins, neg for extraprostatic extension, neg for seminal vesicle invasion; est. tumor involvement 10% of prostate

Travelingman

[quote="JohnRH"]Landry Protocol: http://cancerforums.net/viewtopic.php?t=14761&sid=7c87a10cebfd307910eb7a064f98b3c4

Better diaper brands: http://cancerforums.net/viewtopic.php?t=14799

Tips: Greatly reduce, or cut out, ANY caffeine. Stop drinking any liquids around 7pm (and don't "stock up" before that). Pee standing up when you can as it's easier to practice stop and start of stream while doing that. When I pee sitting down I tend to dribble almost non-stop.[/quote]

JohnRH, Thank you for the links & the tips. Did you start out with almost no control as well? I know it's only 24 hours post catheter but I hoped I would be doing better. BTW, my surgeon suggested the Kegels & said to only try to stop my stream one time & then do the Kegels based upon my finding the right muscles. Do you practice the starting & stopping while urinating several times each day or did you stop this part when you found the right muscles? Are you using the Landry Protocol or the Kegels?
_________________
PSA 18, Gleason 3+3+6, Age 58, Rising PSA since 1999, Biopsy 5% of one core
Robotic surgery 10/26/09 T2B Tumor 30% of prostate involving left & right lobes NOMX Gleason 3+4=7 Urethral Resection margins & resection surface clean Seminal vessicles clean

JohnRH · Regular Joined: 23 Aug 2009 Posts: 39 Location: Denver

I think I've been luckier than most. I'm nearly 4 weeks post-catheter removal. I've had one nocturnal accident requiring laundering sheets. I've been overnight-dry the rest of the time, though that means I've gotten a considerable urge once or twice a night and can make it to the bathroom in time.

I've only used pads and only 4 of those per 24 hour period. I'm down to 1, sometimes 2, pads per 24 hours now. I "may" be pad-free in another month or less.

I've only ever had spit-and-dribble problems, though they were initially higher volume than they are now. I quickly learned to "Kegel" when I was about to stand from a chair or bed, as that is when I was sure to spit.

My surgeon recommended "10 x 10" Kegels, that is 10 at a time, with a few seconds between, 10 times a day. I found it tedious to be that regimented, but I did a lot of Kegels. I haven't tried the Landry but I wouldn't discount it as an additional alternative.

My surgeon did say that 100 or 200 Kegels per day was fine but don't do 500 as I will exhaust the muscle and defeat the purpose of building strength.

I find that standing to pee when I'm able, and pausing/Kegel for at least 3 or 4 times while doing that, has helped my control. For one thing those unexpected spits almost always occur when getting to or being in a standing/walking position, so that practice is useful. To this day I still practice Kegel anytime I pee, standing or sitting.

My surgeon said my continence recovery would be: overnight first, then mornings, followed by afternoons and then evenings. That has been my experience, though afternoons are probably still worse than evenings for the unexpected spits. I'm getting to where I can feel it quickly rising in the penis and shut it off in time.

Do what you have to for your own circumstances. Perhaps a full pants Depends, or similar, would be useful, at least for overnight, until you get more control. It's going to take time. Lemme know if you have further questions.
_________________
DX 07/2009 with Gleason 4+3, PSA 4.1, age 63 1/2.
DaVinci RRP 09/2009; Gleason 3+4; Stage pT2c, NX, MX; neg surgical margins, neg for extraprostatic extension, neg for seminal vesicle invasion; est. tumor involvement 10% of prostate

srtimmons · Posted: Wed Nov 04, 2009 3:39 pm Post subject: incontinence

Travelingman - now that you got the catherter removed , it should improve. try hard to hold it when you standup from sitting or lying and then head for the bathroom. I found that helped me and I'm able to go normally ding that.

I still have severe stress incontinence 3 1/2 months post surgery. But I've not done Kegels regularly and I've just started to watch my caffeine intake better. Still hopeful it will improve.

It starts to improve at night first.

Good luck on your recovery.
_________________
Age 58
Dx 6/15/2009; PSA 7.1; 7/12 cores positive; Gleason 6 (3+3) and 7 (3+4); PNI observed. Bone Scan and CT scan negative. Robotic RP 7/20/2009

Path report 8/11/2009 - clean margins, negative lymph nodes, negative seminal vesicles, Gleason 3+4, Stage T2c; 15% of prostate involved; NoMx.

Post-RRP PSA: 9/09: .006

Travelingman

JohnRH & Steve,
Thanks so much for the tips. How about wetness? did you get a lot of moisture in your groin area & on scrotum & what did you do about it. Thank you both for helping me.

Ray AKA Travelingman
_________________
PSA 18, Gleason 3+3+6, Age 58, Rising PSA since 1999, Biopsy 5% of one core
Robotic surgery 10/26/09 T2B Tumor 30% of prostate involving left & right lobes NOMX Gleason 3+4=7 Urethral Resection margins & resection surface clean Seminal vessicles clean

JohnRH · Regular Joined: 23 Aug 2009 Posts: 39 Location: Denver

Personally if I feel too wet OR smell to bad I change the pad, and initally I was wet, even with spit and dribble. I use a warm washcloth and a handtowel for area cleanup as needed. I've read of some guys using 10 pads a day. They're cheap. Do what you need to do to be comfortable.
_________________
DX 07/2009 with Gleason 4+3, PSA 4.1, age 63 1/2.
DaVinci RRP 09/2009; Gleason 3+4; Stage pT2c, NX, MX; neg surgical margins, neg for extraprostatic extension, neg for seminal vesicle invasion; est. tumor involvement 10% of prostate

mkane09

I'm 13 months post daVinci, 5 months post salvage radiation and still leak. Not stress incontinence, just leak. A little squirt here, a squirt there....just enough to drive you crazy. Caffeine is a definite no-no. But it's the nights that really get me. I have to get up somewhere between midnight and 3 to pee or I wet the bed. It is SO disgusting to wake up drenched in your own urine and have to change the sheets at 3:00 in the middle of the night. When this happens, I envision myself with both hands wrapped firmly around my surgeon's neck, squeezing until his head pops.

mkane09
_________________
PSA 6.48, biopsy Gleason 3+4, robotic prostatectomy 9/17/08, pathology Gleason 4+5, pathologic stage T2c, positive margins, first post-op PSA 10-15-08 0.10; 2nd post-op PSA 0.18; SRT completed May 22, 2009. 1st post-radiation PSA, 8-4-09, <0.06.

srtimmons · Posted: Fri Nov 06, 2009 9:17 pm Post subject: wetness

Even though I am stilll experiencing a constant drip, wetness in the groin/scrotum area has not been a problem. Get the Male Guards from Wal Mart. They work well for me. I can go about my day. carry a few in my brief case and change them out quickly as needed.

3 1/2 months post RRP and I'm still confident the ED and incontinence will resolve themselves.

Good Luck.
_________________
Age 58
Dx 6/15/2009; PSA 7.1; 7/12 cores positive; Gleason 6 (3+3) and 7 (3+4); PNI observed. Bone Scan and CT scan negative. Robotic RP 7/20/2009

Path report 8/11/2009 - clean margins, negative lymph nodes, negative seminal vesicles, Gleason 3+4, Stage T2c; 15% of prostate involved; NoMx.

Post-RRP PSA: 9/09: .006

Travelingman

I'll post an update. It is 5 days post catheter removal & I still leak like a sieve. During the day, it is hard to get enough urine in the bladder to be able to produce a stream. I guess that is because I am constantly leaking. I am having trouble locating the proper muscles for the Kegels. Another interesting thing is that at night when I can make a stream the following happens. I wake up realizing that I need to urinate. If I don't actaully pinch off the end of my penis, I'll lose the urine trying to get up. So I pinch it & waddle over to the bathroom. It must be a pathetic sight! Here is the stange thing. As soon as I let go of the "death grip" urine shoots out. At the end of the stream I feel a little pain like when you are trying to strain to pee. Here I am finishing the stream & there is the straining like when you are trying to go. Does anyone else have this issue & do you think it is the bladder muscle trying to expel the remainder of the urine? I must admit that the whole incontinence thing is a little depressing. I guess in the back of my mind, I worry if I'll ever regain control. I read posts from guys who say they are really dry right after surgery & I question if my recovery is normal & will I eventually regain contol. My wife says I have to remember that it is only 13 days since my surgery. So guys, is it going to get better? Plus are there any comments on anything I wrote above. Did any of you feel depressed over this whole thing & did you try an antidepressant or am I just overeacting?
_________________
PSA 18, Gleason 3+3+6, Age 58, Rising PSA since 1999, Biopsy 5% of one core
Robotic surgery 10/26/09 T2B Tumor 30% of prostate involving left & right lobes NOMX Gleason 3+4=7 Urethral Resection margins & resection surface clean Seminal vessicles clean

JohnRH · Regular Joined: 23 Aug 2009 Posts: 39 Location: Denver

Consult with your surgeon/urologist.

Re-read Walsh's book Guide to Surviving Prostate Cancer starting on page 301, particularly 302, Return of Urinary Control, and 303, Exercises You Can Do. Note his description of the proper muscle contractions at the top of page 304.

I have 2 dates I keep in mind now, Post-Op and Post-Catheter. You have a lot of healing to do, regardless of either. My surgeon wanted me to walk a mile a day within a week of surgergy. That was not easy, but SOME walking daily is highly suggested.

With your excessive dribbling, be sure you are OFF... CAFFEINE... The amount of caffeine intake has made a huge difference in my continence/incontinence. I'm a caffeine addict and I know it's difficult.

Good luck, I'm confident you will improve with time.
_________________
DX 07/2009 with Gleason 4+3, PSA 4.1, age 63 1/2.
DaVinci RRP 09/2009; Gleason 3+4; Stage pT2c, NX, MX; neg surgical margins, neg for extraprostatic extension, neg for seminal vesicle invasion; est. tumor involvement 10% of prostate

mkane09

It IS depressing, but know that time will surely make it better. Maybe not perfect but much better. I think one of the problems you are having is that your brain doesn't know which muscle to contract to stop the flow of urine. Try STANDING in front of the toilet, start and stop a stream. Repeat often. At first you may not be able to control it, but you will get better. Soon your brain will learn which muscle it has to contract to shut off the waterworks.

mkane09
_________________
PSA 6.48, biopsy Gleason 3+4, robotic prostatectomy 9/17/08, pathology Gleason 4+5, pathologic stage T2c, positive margins, first post-op PSA 10-15-08 0.10; 2nd post-op PSA 0.18; SRT completed May 22, 2009. 1st post-radiation PSA, 8-4-09, <0.06.

mkane09

It IS depressing, but know that time will surely make it better. Maybe not perfect but much better. I think one of the problems you are having is that your brain doesn't know which muscle to contract to stop the flow of urine. Try STANDING in front of the toilet, start and stop a stream. Repeat often. At first you may not be able to control it, but you will get better. Soon your brain will learn which muscle it has to contract to shut off the waterworks.

mkane09
_________________
PSA 6.48, biopsy Gleason 3+4, robotic prostatectomy 9/17/08, pathology Gleason 4+5, pathologic stage T2c, positive margins, first post-op PSA 10-15-08 0.10; 2nd post-op PSA 0.18; SRT completed May 22, 2009. 1st post-radiation PSA, 8-4-09, <0.06.

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