12 months after surgery need advice on incontinence

Next week, it will be 12 months since my RPP at JHU. I am still leaking and have started weighing the amount of pee in each pad for about a month. My leakage runs between 2-7 ounces a day with most days hitting around 4 ounces. I am very active and log in between 5-10 miles of jogging a day at a moderate pace between 4.5-5.5mph. In addition, I spend about 2 hours 4 days a week weight training. PSA ultra sensitive have been undetectable on all 3 tests so far. I'm still hoping I could be dry someday. I've visited two urologist who view this as mild incontinence. The game plan is two wait a few more months since there still seems to be some very slow progress. The urologist at JHU has also prescribed Imipramine which I started two weeks ago and don't notice any difference so far. The JHU urologist also suggested I try the Cunningham clamp while jogging and exercise, he said it would not effect additional progress. Even though, surgery is way down my list of future choices,both urologists recommended the sling since my incontinence is mild. Both urologists viewed this as having a very high level of success for me. Again, I'm not ready for that yet and haven't given up hope. I continue to still faithfully kegal daily. I would appreciate any comments and recommendations. Thanks so much. John

Hello Break 60. I've asked both my surgeon at JHU and the Urologist at JHU. Both have told me there where no complications and it was totally nerve sparing. Thanks for the input and let me know of any other thoughts. Good luck and my prayers with you on your journey.

Thanks Tim G. I absolutely leak more on my heavy exercise days. Glad you are doing so well.

Hello Ron. Thanks so much for the post. I do have some questions I'd like to ask you. Couldn't get your email but mine is(email address removed). Thanks very much. John

Post Edited By Moderator (Tudpock18) : 3/8/2016 7:15:31 AM (GMT-7)

Hello Billybob. Thanks for posting. Yesterday was exactly one year since my surgery. I think I'm going to give it another few months before making a decision. On days when I don't exercise, I'll leak 3-4 ounces. Usually that's two pads. Most of the time, I'll wear a depends when I work out. Both the urologist I've spoken with are very favorable on the sling. I understand Mayo will not do slings anymore because of poor experience. There seems to be quite a bit of varying feelings on the sling. I certainly like the thought of a sling procedure as compared to the AUS surgery.

Gee, John, if you didn't run and lift weights you would probably be saying "totally continent at 1 year" (except for a squirt now and then )

I don't have a heck of a lot to add regarding incontinence other than to say as an active, by necessity, farmer, dog trainer and sheep shearer and having an aversion to incontinence, I will avoid surgery like the plague. However, there are , from what I can tell , many guys who achieve tolerable continence after a couple of years you may just need to give it time. Some guys here have said they suddenly have a dramatic improvement even after a longish period of incontinence. Of course there are major advantages to surgery regarding longevity, namely , you know for sure what you have and have, in the vernacular "gotten it out". Hang in there and keep up the exercise..you'll feel better and probably recover better in the long run.

Just a thought John, but you have probably looked into it already.

1 guy from my prostate support group said he actually started having more problems after 1 year out, a little unusual. He sought out a physical therapist that works with men and women for doing the proper kegals. Turns out, even though he had early success and only mild incontinence; he was doing them wrong. He had 5 sessions with the PT where they use biofeedback and other techniques to teach you to engage the proper muscles for the kegal and successfully cured the incontinence. We also had a women speak to our group to explain the biofeedback and some of the techniques they use on men and it was very interesting. She stated it usually will take about 9 sessions or so to know if that is the solution. They also have a biofeedback machine for taking home and practicing what you are learning. I am not sure how they incorporate all of that with the stress incontinence but I imagine they must have techniques for that also. That is where I am at also right now, about 3 months out and I just have the stress incontinence from exercise, coughing, sneezing, etc., other then that I have been dry.

Good luck....Jim

Hi John,
After my surgery in Dec 2008 I was fully incontinent for more than a year. Then gradually my continence returned and I no longer needed to wear pads at 15 months out.

At this time, 7 years after my surgery, I can do anything I want without needing a pad. I remember thinking about a sling. I'm so glad I didn't go that way.

I'm a runner. Since my surgery I have run in 2 marathons and numerous half marathons.

Jim, thanks for the suggestion on a physical therapist and biofeedback. I have considered that but haven't taken action. Your post just pushed me over the edge. I don't have much to lose but a little time and a few bucks. Anything to avoid another surgery. Thanks and I'll keep you posted.

John

Hi John,
My 12 months of incontinence was so bad I wore special washable underwear with an integrated collection bag. That made it bearable for the most part. Sitting down or lying down was never a problem. Getting up in the night to relieve myself required that I keep a jar by the bed. As soon as I got up I would lose it all.

After 12 months I noticed that the amount of urine in the collection bag was gradually diminishing over time. By month 15 I was able to do away with the special underwear and use a light pad for most of my daily routine. Long runs required a heavy pad though. Many days I didn't need a pad at all.

At this point I only need a pad if I get a bad cold. I can workout and exert myself working and I don't have any leakage. If I do a long run that exceeds 5 miles sometimes I leak a little in my underwear, not enough to be visible though. For that reason I'll wear a light pad, especially if I'm signed up for a race.

St. Luke's Health System broadcast a story on TV about my journey with prostate cancer. If you're interested in viewing my story it's available on thepeaktv.com episode 2. Just go to thepeaktv.com and click on episodes. There you can pick episode 2.

Bob

pa69 said...
Hi John,
My 12 months of incontinence was so bad I wore special washable underwear with an integrated collection bag. That made it bearable for the most part. Sitting down or lying down was never a problem. Getting up in the night to relieve myself required that I keep a jar by the bed. As soon as I got up I would lose it all.

After 12 months I noticed that the amount of urine in the collection bag was gradually diminishing over time. By month 15 I was able to do away with the special underwear and use a light pad for most of my daily routine. Long runs required a heavy pad though. Many days I didn't need a pad at all.

At this point I only need a pad if I get a bad cold. I can workout and exert myself working and I don't have any leakage. If I do a long run that exceeds 5 miles sometimes I leak a little in my underwear, not enough to be visible though. For that reason I'll wear a light pad, especially if I'm signed up for a race.

St. Luke's Health System broadcast a story on TV about my journey with prostate cancer. If you're interested in viewing my story it's available on thepeaktv.com episode 2. Just go to thepeaktv.com and click on episodes. There you can pick episode 2.

Bob

That should give a lot of encouragement to many of us, thx! Talk about being in bad shape for a long time, and then getting a whole lot of improvement starting after 1 year, you might take the cake!

John!! said...
I plan on exhausting all possibilities before I elect to have another surgery.

John, this is a very sane approach. Do everything you can do to try to not let the cure be worse than the disease...