What's on TV, oh my bladder!

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knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 10/17/2010 9:53 PM (GMT -6)   
I went to an incontinence specialist last week for a diagnosis of my 100% incontinence since RRP 10 months ago. Since I have had no improvement since a few weeks after cath removal early this january, I was expecting the news I got. My only option is an AUS or of course I could let it drip out. After the bladder pressure check (urodynamics), cystoscopy was done which revealed a very short sphincter. The Dr. said my sphincter was not going to be able to hold enought pressure to alow me to walk around dry. I has been frustrating just keegleing away with no improvement and wondering was i doing it right or doing enough. It was kinda cool to watch the cystoscopy and ask questions as there was no sensation of the camera being up in my urethra and bladder. The numbing gel worked good, at least for a while. He was explaining my condition and running the camera back and forth though my sphincter, yes is really short and a picture is worth ........
I promised myself that I would not consider an AUS till after a year, no point in waiting now.
What I guess happened, was my enlarged prostate had covered part of my sphincter so that part of the sphincter was removed along with the section of urethra that is removed causing me to loose more sphinter than normal. Really doesn't matter now, I have to live with it.
My AUS Dr. didn't offer me a perfect scenerio, the results vary widely and he could not predict what mine will be but he could predict I will be better. I am going for better then learn to live with how I end up.
Another other big post op subject most of us have is ED. I had bad ED pre op and it was no surprise to see that turn to total. I remember talking to my RP surgeon and saying if my ED got any worse it would be total. Well that is what happened. I was putting that on the back burner till I could "fix" my incontinence. I can have an IPP done at the same time as the AUS and I have little doubt I will need the IPP. However I will try injections just to be sure. Pumps and pills don't work anymore due to venous leakage. The whole subject of an IPP has suddenly rushed up on me as now I am going be having the AUS and one op sounds so much better than two.
So i think January would be a good month to be laying around indoors, come to think of it ,that is what I did last January.
 

06-08 1st biopsy neg psa 4
10-09 psa 5.5 2nd biopsy 1/12 pos. 10%, G(4+3) age 65
12-15-09 RRP Tulane NOLA Dr Lee
Path, 1%, clr marg, no EPE, no SVI, nodes cl, G(4+3)
100% incontinent after 3 mo. PT
ED, pre-op severe, post op total , considering IPP
10/10 Dr Boone, Baylor recomended AUS
post op psa's 0.04,<0.1,<0.1

Post Edited (knotreel) : 10/17/2010 9:03:27 PM (GMT-6)


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3744
   Posted 10/18/2010 6:53 AM (GMT -6)   
Knotreel,
You and I are in a similar situation. My prostate was 56g. And after my cyctoscope I was told I had a short sphincter- about a cm.
Doesn't it piss you off (pun intended) that the surgeon didn't bother to tell you the little tidbit that he had to removed half or more of your sphincter and you are most likely wasting your time with the kegels? I kept thinking I was doing something wrong. Screwing around with ultrasonic imaging showed I was doing everything correctly. Great. I have a short sphincter to go with my short winkie.

At 15 months I am still leaking at 100ml per day. 300 ml if I am working outside. I am continent in bed, thankfully, and can get to the toilet in the morning before it starts to come out. My personal urodynamics pressure testing (in the pee gravel) shows I can hold 10 inches of water. That was where I was 2 months after surgery. While my pad usage and leakage has dropped it is because I have optimized the system not actually improved. Darn it.

Please give the injections a try. You never know, they might work for you.
Jeff

--
Incontinence - 8/20/2009 4 full pads per day
.. 9/7 3-4 full pads per day. Try controlling fluids.
12/11/09 5 months: 3 pads per day, 400-450ml/day
02/26/10 7 months: 3 pads but leak is now 320 ml (5 day avg.)
03/22/10 8 months: 3 pads per day, 280 ml/day (5 day avg.) PT says all muscles are tight and working properly. "There must be another issue."
5/22/10 10 months: 2 pads per day, 190 ml/day Scope on June 15 "Short sphincter"
7/15/2010 one year: 2 pads per day. 140 ml/day, dry in bed.

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 10/18/2010 7:26 AM (GMT -6)   
Jeff, do you ever have to pee during the day? Only if I am sitting for an extended time do I pee, driving is a good example. But unless I am reading a book or driving, it all leaks out, no need to pee. From what I saw the sphincter looked like the sphincter might be shorter than 1 cm. I quit using pads early this summer and I use a leg bag with external catheter because being active oudoors the wet pads were causing skin rash. If I was able to get to the point where I needed to urinate even once a day it would be encouraging but I don't see that happening. I will be surprised if I am dry after the AUS but it should at least help. I am not really "pissed off" about the surgical outcome as I don't think he just arbitrarly chopped the sphincter off, part of the sphincter must have been in the proatate. But then you never know? It doesn't matter now.
06-08 1st biopsy neg psa 4
10-09 psa 5.5 2nd biopsy 1/12 pos. 10%, G(4+3) age 65
12-15-09 RRP Tulane NOLA Dr Lee
Path, 1%, clr marg, no EPE, no SVI, nodes cl, G(4+3)
100% incontinent after 3 mo. PT
ED, pre-op severe, post op total , considering IPP
10/10 Dr Boone, Baylor recomended AUS
post op psa's 0.04,<0.1,<0.1

clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2680
   Posted 10/18/2010 8:30 AM (GMT -6)   

I've been wondering lately, given my continuing ED, what role surgical competence plays both in ED issues and incontinence issues.  In my case, for example, the post-op pathology reads "weight of specimen:  80g; size of specimen: 5.7x5.5x5.4."  That sounds to me like a very large prostate.  Cystoscopy prior to surgery clearly showed the prostate intruding against the bladder opening, and the uro had expected to see that based on what he had seen during the biopsy.  He had told me after the biopsy that he was concerned about this intrusion into the bladder neck.

After the cysto, he said he was glad he had seen the cysto images, because he was now aware that he would have to be extra cautious in that area.

Apparently he was very cautious, because at two months I'm essentially OK in the continence area, except when caught completely unaware by a powerful sneeze. 

So, I'm still wondering to what degree the problems so many of us experience after surgery (incontinence and ED) might be attributed to what happened during surgery (surgical expertise); how much to our own peculiar anatomical differences; and how much to the very nature of the delicate surgery we've undergone. 

Whatever the case may be, as someone said above we must live with the results we've obtained, and fortunately there are remedies available to help with both issues.  My uro was very upfront about possible ED issues, given that he was fairly certain the left side nerves could not be saved, but he didn't say much about possible incontinence.  Maybe that's an issue doctors should be more upfront about.

Here's wishing you all the best with your serious incontinence problems.

 


Age 65
Dx in June 2010.
PSA gradually rising for 3 years to 6.2
Biopsy confirmed cancer in 6 of 12 cores, all on left side
Gleason 7 (3 + 4)
Bone scan, CT scan, rib x-rays all negative.
DaVinci surgery late August at Advocate Condell, Libertyville IL
Negative margins; negative seminal vesicles
Smooth recovery; 18 holes of golf at 4 weeks.
Continence OK after 7 weeks. ED continues

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3744
   Posted 10/18/2010 6:10 PM (GMT -6)   
Knotreel
You asked: "Jeff, do you ever have to pee during the day? Only if I am sitting for an extended time do I pee, driving is a good example. But unless I am reading a book or driving, it all leaks out, no need to pee."

That is me in the afternoon. In the morning, up until about 9 or 10 am, I can manage to hold it. If I sit, I fill up and pee forcefully.

If I know I will be using the PC for more than an hour I might drink something as soon as I first sit down. It passes through me in 45 minutes to 1 hour like clockwork. When I stand up I waddle to the bathroom and pee like a race horse.
On the other hand, if the day is going to be busy, or I have to go anywhere, I drink virtually nothing. I have become a master at timing my fluid intake.

In the afternoon I leak with every step and plan my moves accordingly. For example here's how I handle lunch at a restaurant. The trick is to drink the liquid early in the meal and prolong the departure at least 1 hour and 15 minutes by pretending you are really enjoying the conversation. ;-). Before standing up: 1) make sure there is no one between you and the bathroom, and 2) you have the pee pad in your shirt - not pants pocket. While others are talking, excuse yourself and make the pigeon-toed dash.
I have to use the stall since I must 'drop trou' in order to pee. I found if I squat a little while peeing I empty out more. That's why the pee pad is in the shirt pocket. It does you no good if it is around your ankles.

Using these methods I have achieved the 100 ml per day level.
I used to concentrate on UV spectral lines and Doppler shifting of chirped EM signals. Now I have to think about when and how much water I drank.
What a sad waste of brain power.
Jeff

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 10/18/2010 6:38 PM (GMT -6)   
Jeff,I guess after I have the AUS implanted I can use some of your techniques to further manage my voiding. I am not thinking that I will be suddenly dry and will likely need to refine my game somehow. Up till now, I don't think there much to work with.

Clocknut, My gland was 60g, large, but there are some here that busted 100 and more! I am guessing that gland size has a part in the outcome but possibly one's individual anatomy might be the key. If the gland envelopes part of the urethra that is part of the sphincter, that may be more important than sheer size. I have to trust that my doctor didn't just wack it off but tried to give me all the sphincter that he could seperate from the gland. The next part of this battle, I hope will be managing, rather than catching.
The only bright spot is that now i know where I am going rather than have my head spinning about a lot of "what if's". Still, it is hard to get excited about the implant.
06-08 1st biopsy neg psa 4
10-09 psa 5.5 2nd biopsy 1/12 pos. 10%, G(4+3) age 65
12-15-09 RRP Tulane NOLA Dr Lee
Path, 1%, clr marg, no EPE, no SVI, nodes cl, G(4+3)
100% incontinent after 3 mo. PT
ED, pre-op severe, post op total , considering IPP
10/10 Dr Boone, Baylor recomended AUS
post op psa's 0.04,<0.1,<0.1

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3744
   Posted 10/18/2010 7:16 PM (GMT -6)   
Knotreel,
Have you tried regulating fluids like this. It makes a huge difference. I figure if I didn't do that I'd be leaking 400 ml per day. It's worth trying. "Use the force, Luke."
By the way my prostate was 56 grams - on the large side but not like James C's 106 gram bohemoth!
I'll be closely watching your results.
Jeff
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