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Incontinence Issues - 6 months post surgery

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Posted 1/6/2011 10:19 PM (GMT 0)
I would like to hear from some of the veterans of incontinence recovery. My catheter was removed on 7/29 and I have progressed month to month nearly cutting my urine output in half each month. I have painstakingly measured my progress since mid-August. From 5 pads, I am down to 1 pad for a 13 hour period (my commute and work day) My progress has slowed down. I sort of expected it not to be cut by half each month near the end but that is one of my questions. Right now I leak about 9.5 ml the lowest recorded as of yesterday to around 15 to 17 ml over the last few weeks. I don't gush or squirt out anymore. It's more like a gentle weeping with an occasional spurt. I leak only when I walk or do activity mostly. I kegel if I cough to stop the flow. ( I do kegels laying down, sitting and then standing - 10 short, 10 ten second holds with 10 sec in between - the set of three positions - twice per day) I spurt a bit sitting down or standing up. Sitting is fine, no leaking.

1. Does the leaking slow down to the level I described and then just get less and less until one day I will note a totally dry pad (in my case measure it as the same as dry)?

2. Has anyone experience the same as I have where the last few drops refuse to come out and once the pad goes back on it drains out? Sometimes I have to use TP and blot the tip to get it dry. I swear this operation turns you into a female.!

3. Do you get more false leaking. Feels like leaking but nothing comes out.?

4. I am nearly completely dry for the morning 1 mile walk into work but sputter and weep on my walk back from work the same 1 mile. Is this common?

5. When standing for a long time, I feel a fragility on being able to hold urine. I describe it as having a "hair trigger" for leaking. One small move or jolt and a squirt comes out.

6. Passing gas become a problem sometimes and other times not so much of a problem. Just have to let it nearly come out on its own. Can't ever really forcefully push out gas unless over a toilet. I sure hope this one will get better.

7. Drying oneself after showering. Sometimes no weeping, other times very gentle patting dry or else you might as well take another shower. More "hair-trigger" syndrome.

8. Swear that the pad causes leaking. Just putting it on brings on a spurt that let me know this ordeal is not over yet bub!

9. Feeling that this will never end.

Thanks for any insight you can give. I know the mantra. Give it time. but just wanted to get feedback on how typical or weird my experience is personally. Thanks again. you guys are a wonderful group for support and hope. I keep you all in my thoughts and best wishes.

Mike S.
Posted 1/6/2011 10:32 PM (GMT 0)
Mike:

Stop fretting and stop measuring.

You are less than 6 months out of some very serious surgery. We dont all heal the same. I still use one pad every day, after one year but I got used to it and it does not bother me. Mind you, I'm likely a lot older than you, at 72, but it's really no big deal.

I'll likely get better over time, if not, I still have a lot of living to do. Pads or no pads.

JB71, still in Canada.
.
Posted 1/6/2011 10:35 PM (GMT 0)
Mike, I know its not funny, but your #2 made me laugh at the end. PC makes strange creatures out of all of us at different times. Hope you "dry up" soon.

David
Posted 1/6/2011 10:39 PM (GMT 0)
Mike,

I am 14 months out from DaVinci, but was at about 4-5 months out when I started radiation. I think I was pretty close - 1 pad a day at that point. It has worsened since, but we blame that on IGRT. But to your points, here is my experience:

1) Some members tell of just drying up one day without warning, so it is possible.

2) Yes - I suspect it has to do with flexing / bending - I try to do a set of kegels while standing after my trip to the pot. That seems to clear it out.

3) Have that.

4) Yes - the pelvic floor muscles get tired just like the rest of the body, so leaking more later in the day happens.

5) Same here.

6) After RT, there is a new rule - don't fart unless sitting on a pot. Period.

7) Had that early on, but it is gone now.

8) It may actually cause a leak. Just the movement and flexing, just like standing up.

9) At three months, I was in the same boat. But it did suddenly get better. Then I reset everything with radiation, so can only blame that on ....  Oh well, yes, at 6 months I had about given up, but I also sorted out that I really did have to accept that there is a "new normal" for some of us, and we have to adjust, so I did.

And just remember, if you stop doing kegels, you might start leaking again. I backed off for a while. Bad idea.

Yes, it gets better. Some because you figure out how to deal with it, and some because you come to understand that some uros think 1 pad per day is "continent". I wish mine had told me that early on.

Keep at it - improvement is almost always possible.

 

Posted 1/6/2011 10:40 PM (GMT 0)
JB:

C'mon, that's a bit harsh.

The poster expressed a legitimate concern with legitimate questions.

Mel

Posted 1/6/2011 10:54 PM (GMT 0)
Mike,

I leaked really bad for the first 6 month's and it started getting better.

Then I was reading a post here about someone leaking and Casey59 made a comment about alot of it being in your head and that kinda changed my attitude and things really seem to improve after that.

Hope this helps,

Neal

Posted 1/6/2011 11:09 PM (GMT 0)
Mike,
I had the same experience with #2 and #3. I'm almost 2 years out and still experience both of them at times. I don't ware a pad any more but on some days I lose a couple of drops under stressful conditions.
Posted 1/7/2011 1:07 AM (GMT 0)
Hey Mike,

Reading your symtoms was like reading a list of my own experiences, I'm 7 months out now and still going through 1 pad a day, I was 10-12 for the first month.

In order:

1. don't know, I'm not there yet.

2.nope, it all comes out. I'm still a man, ED finally resolved.

3.yes, to false leaking, I think a drop gets into the urethra and it feels like much more.

4. I have much better control in the morning, I'm worst in late afternoon.

5. Yes, I often leak when standing, if I stand still its OK, if I move suddenly I dribble. I try to stand and pause for a moment, this helps.

6. Passing gas has become a new art form, takes real control to pass one without the other but I have become the master.

7. I get the same thing, drying off and I'll get a renegade drop landing ontop of my foot...ugh.

8. I've been warned not to become pad dependent, I sleep padless. I've tried to go padless for a while before bed but still leak a bit, I put a pad on to save on laundry.

9. My feelings also, I've recently started back into fast walking on the treadmill in order to get some more muscle tone down there, its only been 10 days but I have gone from 1.5 to 1.0 pads in this time span. When I break into a slow jog it all dumps out.

Christmas was my target to be dry and I missed it. I'm assuming it will come just as my erection slowly came back, we really don't have a choice do we.

good luck on your journey to dryness Mike, you're not alone and some are worse than us.

I refuse to quit in my quest to become dry.

r

 

Posted 1/7/2011 4:01 AM (GMT 0)
I wish we could give definitive answers for these situations. You will hear men on here who were totally continent from day one. Others have never totally dryed Many are in between.

I went for 8 months, and then went padless. After 21 months, do I ever have a wet spot ? Yes. Do I ever drip a little ? Does exertion cause leakage ? Yes. Do I get worse after a long day ? Yes. Does coffee or iced tea (with sweetner) make it worse ? Yes.

Somewhat like JB above mentioned, I have just learned to live with it. So far, as a Gleason 9, I will trade my .01 dor a drip in my pants. Life is good, and I intend to live every minute of I can, damp underpants or not. I think it is getting a little better, and if I watch what i drink, be careful when I lift or exert myself, I am fine. If walking causes me to me to leak, I wear a pad, or don't walk or whatever it is.

Sometimes I am prone to focus on unimportant things, rather than the big picture like playing with my twin grandsons, making love to my wife, or watching a good football game. I hope you can continue to improve, and make a little dampness a minor thing in your life.
Posted 1/7/2011 4:09 AM (GMT 0)
Thank you for the diversity of answers so far.  I agree but have not wrapped my head around the notion of not being concerned about having a pad.  At least at this point, I am not nearly as concerned with filling a pad to the point of spilling over as I was a few months ago. 

We have entered an alien land and the roadmap to survival is our shared experience.  I agree that a PSA of >0.1 undetectable as I have had from my initial post surgery test is far sweeter sounding than any issue with pads.  Hoping for another good PSA test result this March.   I am still learning to cope with all of this.

Thanks again,

Mike S.

Posted 1/7/2011 5:49 PM (GMT 0)
Mike,

As you've seen from the replies, and other threads on the subject, not all of us recover from incontinence the same. In fact, I've hardly seen any two guys recover from any of this the same. Back to you list above, I have or do experience 4, 7, 8 and 9. My doctor alerted me to the possibility of 3, but I've not experienced it yet.

I am seeing progress. One day last week I hardly leaked at all. Some days are better than others. I have my first session with an incontinence therapist Monday.

Hang in ther friend.
Posted 1/7/2011 7:36 PM (GMT 0)
Mike,

I am 20 months out from Davinci and have experienced most of your points.

Point 3 happened quite a bit, but every time I looked I was dry.

I am now 99.99% dry and still experience the after dribble when urinating and yes have to use paper to wipe off, I also use the method of stroking the scrotum upwards which does a good job of emptying the uretha.

I am very carefull on passing wind and found it best to squat on the pan or be very controlled and let it happen gradually.

As said before we all heal at various rates and I hope that you to will soon be fully recovered.

All the best from England.

Posted 1/7/2011 8:04 PM (GMT 0)
To All:
Again thanks for the input. More opinions are welcome.
I guess my biggest pet peeve is walking. I am learning to cope with the notion that like many of you the occasional textbook definition of stress incontinence will be part of my life. It is the drip and occasional squirt while walking that drives me nuts. Sweating around the edge of the pad is another one but that is a minor indignity. I just want to walk and not ooze...... I walk gingerly now so that I don't start a squirt festival.

Also lately, since I don't flow with abandon like I did a few months ago, the occasional squirt is more annoying now since being nearly totally wet was a constant before. Not complaining, just observing for myself that I feel the annoying spurts and slow oozing more. I swear the Depend pad sops up the squirts better than the weeping type drip. The weeping type drip seems to stay on the white mesh covering longer rather than being wicked down into the gel reservoir. What is that gel anyway? Glad it does not spontaneously combust or anything like that.

Mike S.

Depends pads may start to be overkill shortly, if not right now with only 15 to 20 cc of fluid for 12/13 hours of wearing.
Posted 1/7/2011 9:06 PM (GMT 0)
MikeS24,

There are somewhat lighter men's guards out there.

A step down from the Depends is the Tena (I know Tena won't like me saying that), but I mean it in terms of thickness and capacity. The Tena is a wider pad, more triangular, and thinner (fits better), but holds less.

Go to www.tena.com where you can get a free sample of 2 guards, and that will include a coupon against a future purchase.

Tena is available in CVS, and some Kroger stores. They have a page that tells where products are sold.

Coloplast makes a lighter "pad" that is more like a condom. They call them "drip collectors". There are two varieties, Conveen 5410 (penis only) and 5420 (scrotum and penis for those of us who can't find Willie anymore).

They will also send you a pack of one type (packs of 10) as a sample. Those products are expensive, and harder to find in a store.

I agree - I also expected to be one of the "98%" who didn't have any problems, but I was wrong.

Posted 1/10/2011 4:28 PM (GMT 0)
Thanks again guys:

I wish this forum could be subdivided to cluster topics together. So many of you have great advice and supportive comments when we are feeling low. You have to work hard to find pertinent stuff since it changes hour to hour.

I know that my friends get on my case for measuring my pads, but thankfully, I am down to only around 15 to 20 cc of urine in a Depends pad in a 12 to 13 hour period. I try to reduce the variables as much as I can. So the 12 hours represents the time I put on a new morning pad after getting showered and ready for work, until I come home at night. My routine is so consistent and repetitive that, in this case, it helps me see if I am reducing my urine output.

So my point is: At 15 to 20 cc of fluid (that's roughly half of one of those plastic cups you get with a Nyquil cold remedy bottle) it would be darn near impossible to tell if anything is in the pad. I hold a 20 cc pad in my hand and it feels nearly the same as a clean dry pad. So to critics of weighing pads with a postal scale, for me it just gives some cleaner way to measure that I am making progress. Otherwise at this point, I would have thought I was not leaking nearly at all since the pad feels so light. Just throwing this out to all if measuring is something one would like to do.

I am game to try the suggestion I just read about a Nordi-trak machine. Everyone who has posted seems to indicate that exercise is crucial to recovery. If I did that, I could see somewhat more objectively if my pad volume went down.

Some have used a skilled incontinence physical therapist and have found that to be helpful. PT's have a slew of exercises that seem to help. Some do absolutely no kegels and just wait for nature to heal them.

I did watch a slow but informative video from Sloan Kettering on incontinence and one of the take home points that was made at the end was that the 12 to 18 month and even further in some cases should be left to run its course before embarking on a surgical procedure. Even my own doctor's stats from Hopkins stress the length of time it may take to gain continence.

In summary, I guess we are all here to be proactive about our future state of being, either from surgical recovery or continued monitoring of our PSA, etc.

Again, thanks for the collective wisdom of what we have been experiencing. It is good to share and know that we are not alone in what we are feeling or how our body is reacting.

Just waiting for my spurting to turn to weeping and my weeping to complete vanish. I would love to get through a long walk without having any leaks, even the weeping kind. I miss that the most right now.

Later, Mike S.
Posted 1/10/2011 10:53 PM (GMT 0)
Today I started wearing Tena pads, per 142's post. They are certainly more comfortable that the Depends. Since I thankfully do not need the capacity, the Tenas should work out well.

This morning I had my first session with an incontinence therapist. She (they are all cute young women it seems) stressed patience and told me to remain optimistic. Most men do get better and there are things far beyond Kegels if necessary. One thing she told me was to watch my diet and liquid intake. Didn't realize so many things irritate the bladder. The second is to try doing exercises lying on my back with knees propped up. Also, men tend to overdo it, so she cautioned me against that.

I had a really good day a week or so ago. While not out of the woods, I am seeing progress. Hang in there friend.
Posted 1/11/2011 12:29 AM (GMT 0)
I too ended prefering the Tena Male pads. Much more comfortable and arguable held almost as much as Depends which were a lot more bulky. Perhaps someone should start a thread just on "different pads for different occasions or conditions". I may just do that for the benefit of any new AUS guys.

As noted in some of my post on the AUS journey, I have tried all kinds of light ladies panty liners to catch residual drops. In my opinion Always Infinity are far superior to any I have tried....more comfortable, don't even know they are there.

Great to see some of you guys are making real progress. Something that never happened for me. I am one of those 2% guys. Still, I am a really happy camper with a normal life after surgery for RP, a Virtue sling and an AUS....all in a two year period. A little leaking is nothing compared to some of the more serious situations some of the guys on the list have with other complications. A little leaking compared to ????? can be a relatively good thing!!!!! tongue

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