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Three Months Past Robotic Surgery & a Heavy Leaker, Am I alone?

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Posted 2/2/2010 1:45 AM (GMT 0)
Hi Everyone,

I am 3 months past robotic surgery & have recovered very well except for incontinence.  I even had my first erection 18 days after surgery!  Boy, do I wish I could trade that for continence.  I have been very active on the Prostate sectgion of cancerforums.net but can't seem to get answers about my problem.  I am using 5 to 8 pads a day unless I am very inactive.  Basically, I leak all the time I am standing or active.  I can get through the night staying relatively dry & can build up urine in my bladder if sitting & can make it to the toilet with only a few drips.  I have read of many other men with this problem who have not seen improvement in continence.  My question is:  Have any of you gone from 5 to 8 pads a day at 3 months post surgery to being relatively dry later in your recovery or am I doomed to seek surgical correction with my present situation?  Thanks in advance for any help you can give me!

Post Edited (Heavy Leaker) : 2/1/2010 6:54:27 PM (GMT-7)

Posted 2/2/2010 2:43 AM (GMT 0)
Heavy Leaker,

It is still pretty early to say that your doomed. Some of the others might have had the same experience and they can share their story with you. The night is a positive and the ability to hold it in your bladder is as well. Stay positive cause the game is not over and you might check older posts on this forum. Take care.

Michael

Posted 2/2/2010 3:00 AM (GMT 0)
Dear Heavy,

I first of all will assume you are religously doing kegal exercises several times a day. This is important.

Secondly, even tho it makes you leak, regular walking is helpful.

It took me 8 months to get dry. I was leaking multiple pad a day. I work in the service business with industrial customers, and leaking was a real problem. I went to a Cunnigham clamp during the day. I did my kegals, and at night, took the clamp off.

I think the fact you are dry at night is a good sign. The fact you can hold urine while sitting is good. Now you just need to train those muscles to help you while standing and walking.

Kegaling is a drag, but it does help. You might evan google some kegal sights for some different techniques.

Good luck.
Posted 2/2/2010 3:22 AM (GMT 0)
Hey Leaker,
I was asking similar questions 5 month ago.
There are a number of studies out there that show at 3 months ~2/3 of guys are continent and 1/3 are leakers.
Of those third, at one year 2/3 are continent, and 1/3 are still leaking.
You are still within specs. - except for your woody, you lucky ....

Welcome to HW.
Jeff
Posted 2/2/2010 4:20 AM (GMT 0)
Heavy,

I am at DaVinci + 14 weeks (age 56). Some thoughts - Kegels are really working, but you really need to balance that with walking.
Early on I was at 7-8 heavy pads a day.
At +8 weeks, I was down to 3-4 pads (daytime) and basically dry at night (still use a pad just in case I sneeze, which opens the gates). Kegels - 2-3 sets of 10, but I was not walking a lot, and sitting most of the day.
Weather was good, so I kicked in a fixed mile a day.
Leaking picked back up to 4-5 pads a day.
Took the Kegels to 3 steady sets of 10, and balanced back down to 2-3 pads / day (no night change).
Weather got better, so I went to two miles a day.
Leaking went to 5-6 pads a day, 7 on a couple of bad days.
Took the Kegels to 4 sets of 10, and am back to 2 pads (no night change).

I had taken the Kegels to 5 sets of 10 at the start, but that was actually brutally painful (hip problems from past surgery), probably too much too early. I am now working back up to that slowly.

So, in my mind it is a balance of exercises. The Kegels have real impact, and I have improved. I am not in the group that walks away from cath removal "dry", nor am I in the "dry by three months" group. I'm hoping to hold enough water for what I have to hold for the radiation series starting in April (I had positive margins and extracapsular extensions, and a Gleason 4+5 post-op). I have been told it will get worse then, so am trying to get done what I can now.

Also, the doc was clear - "dry" will never be what "dry" was before. Ask the ladies in your circle of friends, who will tell you that a sneeze or a laughing fit will always draw drops if not a wet spot. My lady friends have fun with me on that - there is no pity offered.

Being dry at night is a milestone, so take that as a real positive.

Get the exercise in balance for a week or two, and re-evaluate. Keep the urologist informed as to progress or lack thereof.

Since they got both sets of nerves (both involved), my objectives are a little simpler, so I'll not go easy on you if you slack off.

Hang in there.
Posted 2/2/2010 11:38 AM (GMT 0)
Hi Heavy,

Actually I could have written your post....our conditions mirror each other that closely. I just passed 3 mos., I'm dry at night, dry sitting, can walk to the bathroom without leaking, but cannot retain a thing when active. If all I did was sit around all day then take a whiz every time I get up I'd be continent. But who am I fooling? A few months ago I went back as far as one can go reading every HW thread on incontinence and there are lots of stories about guys who get dry at 4, 5, 6, 7, 8, months and even later. The statistics say 90% of us are basically dry at 1 year. My family physician insisted I try Enablex which is a drug for urge incontinence that relaxes the smooth muscle of the bladder. I have my doubts but he gave me a bunch of his free samples so I'm giving it a whirl. If it helps I'll definitely report it. So I take heart from the success of the brothers who have gone before and try to be patient.

Steve
Posted 2/2/2010 1:16 PM (GMT 0)
Hi Guys,
Thanks for the replies. Kegel exercises have been one of my weak points. At first, I could not hold a Kegel for more than 2 seconds & had real doubts as to whether I had the right muscles working. So at 4 weeks post surgery, I started biofeedback & was able to find the right muscles (at least the therapist says I have). Gradually, I have been able to hold the Kegel longer. I canot hold a Kegel while walking as an example. It is very hard to kep up the Kegels when I don't seem to be able to make any progress in the walking while holding thing. My surgeon hasn't been very encouraging as he says that Kegels "might" help & someone told me that at 6 months post surgery men who Kegel & those who never did have about the same incontinence rates. Has anyone else heard this? Also, are you guys convinced that Kegels really do make a difference? How many sets a day should I do & what d you consider a set? I cn do the rapid squeezes pretty good but holding them is a different matter. Is it supposed to require all you can do to maintain a Kegel? I have to squeeze so hard my lower back hurts.

I am very active, sometimes walking 5 to 6 miles a day. I also went on a major diet & lost 35 lbs but have put 7 lbs back on. I guess the problem is that I have lost hope of getting better. I read so many posts of guys who are dry right after surgery or within a few weeks & until I found this forum, saw no examples of men like myself. This has been a big part of my pessimism. It seems there might be hope yet. I felt I was doomed to eternal incontinence or an AUS.


I would be particularly interested (and I am sure others like me would be also) in hearing from men who were at my 5 to 8 pads a day at 3 months but then went on to being drier. I am not looking for complete dryness. I can deal with a pad but it is hard to deal with a very full pad every hour when active & the resulting accidents when I forget that an hour has gone by. Thanks for listening everyone. I'll add my history to my signature in a little while.
Posted 2/2/2010 1:31 PM (GMT 0)
Hello Again,

I added my history to my signature & hopefully I did it correctly so that it will be displayed with this post.

Posted 2/2/2010 2:13 PM (GMT 0)
Leaker....I fall into the catagory you asked about. I was a heavy leaker for about 5 months. Then slowly it begin to improve every day and then almost suddenly it seems...overnight I was dry at the 8 month mark, except when lifting heavy objects or lots of activity. I have no idea why, except I think it had to do with the nerves healing. I tried the kegals early on, but honestly I gave them up as I thought they weren't working at all. Now at 15 months...I can dance the night away without leaking. I still dribble slightly when lifting heavy loads, but I can live with that. I am even confident that will improve as well.

Hang in there...you may have similar results with time.
Posted 2/2/2010 2:23 PM (GMT 0)
Heavy leaker,
I was leaking during the day for almost 5 months. Progress came slowly, I did Kegels and exercised. I no longer wear a pad but have an occasional drop when I play golf.
Posted 2/2/2010 9:24 PM (GMT 0)
Maybe stop and think a momet. Is it possible "stress" incontinance? I had that for nearly two years. Also, if you lifted something failry heavy....even hours earlier in the day. Shucks, I had leaking problems for over three years if I had too many beers the night before. Just had to remember to put a pad on at bedtime.
Posted 2/2/2010 9:57 PM (GMT 0)

justus1292 said...
Maybe stop and think a momet. Is it possible "stress" incontinance? I had that for nearly two years. Also, if you lifted something failry heavy....even hours earlier in the day. Shucks, I had leaking problems for over three years if I had too many beers the night before. Just had to remember to put a pad on at bedtime.

I think it is the stress of walking, stretching etc.  Isn't all leaking due to stress if it only happens when you are moving around?

Posted 2/2/2010 10:02 PM (GMT 0)
Hi everyone,

I think I goofed on my post above.  I thought I was quoting justus1292 & that my comment would be a separate post.  What I was trying to say is that it seems that all leaking while walking or stretching, etc is stress continence isn't it?

Posted 2/3/2010 1:03 AM (GMT 0)
LEAKER, watch what you eat and drink, simple book helped me (prostate cancer for dummies),
seems ph of food and drink has a big bearing on leakage. Ph pills in book helped, avail. at walgreens. Wine and beer, my favorite, has low ph values that will cause bladder leakage. Leakage no problem for me after I started eating better. 99% dry after 7 weeks and ph control. May help you, worth a try.
Good luck
Posted 2/3/2010 12:43 PM (GMT 0)
Dragonslayer, Thanks for the info. What are these pills called & where did you find the book?
Posted 2/3/2010 3:12 PM (GMT 0)
Leaker,

OK let's think about some practical matters while you are waiting for continence to occur. All those wasted pads for instance. Doesn't it get you feeling down every time you replace another one? Also I see that you mentioned you are very active and walking up to 5-6 miles a day. (That by the way is as good if not better than kegels). Jogging/walking will surely will cause a lot more pad usage than if you were a couch potato.

My exercise gig, for the most part, has been jogging in place while watching TV (GO Celtics!) -- or playing with the cat (flick a rope he can chase and attack -- she gets exercise too). In my early days that is where some leakage would definitely occur. What I used during exercise time was The Cup Method, which has become a Legend on this board over time. Have not mentioned it lately since I no longer need it, but here's a good a place as any for a refresher course.

Simply put, The Cup Method is just a clear plastic disposable 10oz cup snugged to your leg using a recycled neoprene strap that came with your Leg Bag. Snugged near your crotch and in goes Johnson and it catches any drips during exercise (only useful in the privacy of your own home but good enough). A tissue in cup will help if sloshing becomes an issue. With care you can even sit down, but gotta remember to tilt the cup!

Then just do your treadmilling or jogging in place or even walking around the house and it'll collect the drips. Not only that, you will notice more about when you drip or not and can practice holding it in. Have a collecting container nearby for dumping and you don't even have to take time to head for the john. (Wife might not like the idea of golden liquids stored about the house tho -- but she'll get used to it).

One good thing about this method is your privates get a lot better airing than if you have moist pads there all the time. And of course you are at least not wasting pads while at home -- saving them for when you are out and about only.

And you even get to measure your leakage if you like. We've had the engineer types here do that and graph it out over time etc. Fun stuff.

So, don't laugh til you give it a try. By not using up pads all the time it will boost your spirits while your are waiting to go dry -- and think of all the LandFill space you'll be saving by not using pads.

Be sure to report back ... and ignore any laughter from partners etc ....
Posted 2/3/2010 6:55 PM (GMT 0)
Heavy Leaker

How much are you leaking? Can you weigh your pads? Are you truly filling pads? I found that I can put half a Poise pad inside my usual pad and it will be FULL in about an hour. I can then rip that out and repalce it. Any overflow gets caught in the main pad. If I can't be continent, I m9ight as well reduce the number of pads I use by filling them to the brim. Overnight pads that are dry get tossed into the wood burning stove so I turn them into heat. I get my money's worth.

JimStars, Finally I get to meet you! A couple of guys mentioned the "Dixie cup guy" and suggested I find you but but didn't remember your name. I'm one of the "engineer types" who plot pee leakage daily. At 6 months, I'm 1.05 steps forward and 1 step back. If I look at my charts and squint my eyes, I think I can see minimal progress. Maybe.
We both must have very understanding wives. Mine is not pleased that I measure my full pads on the kitchen scale. She probalby would not like cups lying around. "They're Mountain Dew, dear. Yeah that's what they are, Mountain Dew."
Unfortunately, since my surgery, I do not have enough length to fit down into a cup. I stick straight out like the famous Farrah Fawcett nipple we had hanging on our walls in college. On the bright side, I never have to worry about willie wandering outside the green zone. He's on such short leash he just sits in the same spot all day.

Stay dry,
Jeff
Posted 2/7/2010 2:40 PM (GMT 0)
Dear Heavy Leaker,

It's probably way too soon to tell if you improve, and it's important to remain positive.

But it's also important to know that you won't have to live with incontinence the rest of your life. there are some relative easy surgeries (Advance, Virtue) if necessary down the road, but it takes 1-2 years to see if they are needed. See my posts (rapids) and also tallguy for more.

Rapids
Posted 2/7/2010 3:08 PM (GMT 0)
Heavy Leaker,
Ditto what rapids said. You still have a way to go and with the excellent advice from the comments above you still have time to find improvement. I was one of the small percentage who did not. After one year (see history) and after trying about everything I resigned myself that I would need a surgical fix. I had that done last week and have created a thread "tallmans journey to coloplast male sling.
Don't hesitate to talk directly to those who have similar history to you. I found a couple that were kind enough to exchange emails and phone calls and it was a great help. Ask your doctor for names and phone numbers of patients they have treated as well. You will find as much or more help from others as you will from the medical professionals.
By the way, I found that using a Cummingham Clamp during the day that I could lead a normal work life (office worker). Another clamp noted on this form was called Dribblestop but I never used it. I found this much better than changing wet pads all day long. Just needed to urinate every 1 1/2 - 2 hours. and watch what I drank.
Posted 2/8/2010 2:12 AM (GMT 0)
Hi Heavy,

After 3 months of using 10 or more pads per day, I switched to the Afex incontinence system. That served me well for another four months as I gradually regained enough continence to go back to a single pad per day. At present, about 14 months after surgery, I often go without any pads in a day. I still use a pad if I'm doing anything that requires exertion. I use a pad at work because I don't have enough confidence not to at this point.

I've never weighed the pads at the end of the day, but it doesn't feel like there is any change from when I put it on in the morning. After all this time I think I can pronounce myself continent. It's a great feeling that I bet you will soon experience as well.

Oh, my latest PSA was undetectable on the 5th of Feb. That felt good too.

Wishing you well,
Bob
Posted 2/8/2010 1:30 PM (GMT 0)
I am at 4.5 months and still filling 4 pads in a 24 hour period. I know how you feel. In December I was at 8-10 pads. My doc said I am improving an to be patient. He told me that by the end of April (next visit) I would probably be dry. I hope he is right but I have my doubts.
Hang in there you're no alone.
Len
Posted 2/8/2010 5:42 PM (GMT 0)
Hey Guys,

Thanks for the positive comments.  My surgeon seems to think that since I'm still going through 5 to 8 pads a day on days that I am active, I will need an artificial sphincter.  Have any of you gone from this many pads at this point to eventually being pretty dry?  How important are the Kegels?  Was the Cunningham clamp relatively comfortable?  I am using a Baumrucker clamp which is made of plastice & foam & the sharp edges of plastic really irritate me.  Because of that, I use it very infrequently.  Also, any other advice for me will be greatly appreciated.

Posted 2/9/2010 12:01 AM (GMT 0)
I used a Cunningham clamp for over a year fairly successfully. It is important to replace them after the foam rubber wears down. I found this to be no longer than a month. I would order two at a time and alternate them...saves shipping costs. Experiment with where you place them (near the end or near the base) and with how much pressure. Depends on your size. Adjust the clamp so that it is enough to keep from leaking but not too much to where it is uncomfortable. This worked fine for me as an office worker. The more I was standing and the more physical I was the more uncomfortable the clamp was. Also, I found it necessary to urinate every 1 1/2 to 2 hours. I could usually get through an entire day without changing a pad. I also travel a lot and found this very workable on plane trips etc.
Yes, I always wore a Tena Male pad along with the clamp because you still will get a little residual leaking depending on the day and the clamp pressure. I found I could carry on a normal day and use the urinal even with others in the next stall. No one noticed I was using the clamp. I heard about a clamp called Dribblestop but never got around to trying it.
Hope you find this helpful.
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