Leakage Regression

This is my first post on this forum but I want to say how grateful I am to have found this community. I have learned much and found much comfort from reading of the struggles and the triumphs of each of you.

Now to my, albeit minor, problem and question. I had my catheter removed on 01/04/18. I have largely been continent with leakage both at night a during the day. Wearing a diaper at night just to be cautious and had been going thru a couple of pads a day. I had not had blood in my urine since maybe the 2nd day after cath removal.

A couple of days ago (2 weeks post-cath removal) I started having blood in my urine and was passing some clots. It appears now that the blood is clearing up, but my leakage is back to around where it was right after the cath came out.

Is this a common thing? I was encouraged by the improvement, but this has me kind of perplexed. Anyone else seen or heard of this?

Thanks!
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49 yo DX 11/8/17
PSA 4.7 on 08/17, 6.0 on 09/17 (after antibiotics), 5.2 10/17
BX 11/8/17 - 3 of 12, G6 (3+3)
de Vinci RALP - 12/26/17
Path- 1 margins positive @ apex (~3mm), 60% involved, G6, no seminal or lymph intrusion,
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Follow-up PSA: Scheduled 02/12/18

Sounds totally normal to me. I passed clots for over a M0nth, my Uro's NP told me it could go on for up to 8 weeks.
And continence improvement as SP said, is not at all linear.

Just an idea, what I did, was I weighed my pads (on a food scale, actually a Weight Watchers scale) and kept a journal. This helped me track progress week to week, rather than day to day.
Bug you may not be as insane as I am.

Thank you all for your feedback. I'm glad to hear that it's kind of to be expected. I had called my uro and he told me "it was nothing to worry about", but I wasn't "worried" worried. It was a little unsettling, so maybe I just needed to hear that it was not abnormal.

Patroman, you probably shouldn't have given me that advice. We don't have a food/pad scale, but I'm kind of a weights and measures guy, so I'll probably be at Wal-Mart today.

What's one more thing to obsess over?

Thanks again to all!

Skypilot56 said...
James - your right on schedule doing good the only thing I can add is if your able start walking, walk some more and then walk more lots of guys here and other sites have found this is one of the best continence control exercise you can do along with kegals for me the walking was much better Wishing you the best in your journey with our darn disease!

Larry

Ditto what everyone has already said. I had a longer struggle towards adequate continence than most folks do, though that is not uncommon when the prostate is really large and they have to do a wide cut as they did for me. The length of the journey towards continence does vary widely though, from immediate to a few days to 6 months or even over a year. So bottom line is: you really can't judge much about the ending based on these 1st few months, even if they are not so good. You just have to wait and see if you are going to be in the 90+% (at least claimed by many surgeons) that end up fine or the 3% or so that end up having to do some sort of surgical intervention.

about the walking: I agree with Larry/Sky that walking is very helpful. I had been doing some daily walking for a few months. But when my wife dragged me on a European tour which involved sitting on the bus but with lots of walking interspersed around the various cities and towns, all day for a week, I noticed a very significant improvement when we got back. I also had to hold it in a lot with bathroom access always sketchy, and opportunities to change a pad were not frequent. My 1 pad that I would change when we got back to the room would be very heavy, even with me fighting to hold it in all day. It was like one all day Kegel(breweries tours and samples were involved! LOL! ) But I was convinced, when the ordeal was over, that all of that helped me. So walk a lot and do your Kegels as directed. If it seems slower than you think it should be after a while, you can ask your doc about electro-stimulation/biofeedback training. That might also help. Good luck with your progress!
Bill

Thanks again to all for your responses. I've been able to get out for walks since about the 3rd day after surgery. I've been taking the dog out for his daily walk and then doing another short one with him at night. One improvement point I can see is to maybe work in an additional walk in the middle of the day.

My uro suggested waiting a couple of weeks after the cath coming out before starting to do Kegels. That seemed a bit strange to me based on what I've seen here, but I went with him on it and started those earlier this week.

I know I'm still early on in the process of recovery and I'm pushing on.

Yogi Berra's legendary quote about baseball rings "true" for me in recovery so far.

"Baseball (PCa recovery) is 90% mental, the other half is physical"

JamesC09 said...


Yogi Berra's legendary quote about baseball rings "true" for me in recovery so far.

"Baseball (PCa recovery) is 90% mental, the other half is physical"

Here I thought you were going for:

"It ain't over till it's over." - Yogi Berra