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Catheter removed today....dribbling verywhere

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Posted 9/24/2013 6:21 PM (GMT 0)
I had my open radical prostatectomy 12 days ago. Today I had my catheter removed. I knew there would be incontinence, but I thought there might also be a wee bit of continence as well. The nurse said to call her if I did not urinate by 2:00 pm. I have already gone through 3 super Depends. I still get minor bladder spasms. When I feel I might urinate, I get up and well...I urinate in my pads as I am standing up. I go to the toilet and stand over it and it just dribbles out with no control at all from me. So I am less continent now than when I was with catheter. ( I had bladder spasms when I had a catheter which would cause me to dribble from my penis.) When will I get my first urge to piss, go to the toilet, and then piss? Not be totally continent, but have an urge to pee, and then pee in the toilet?
PSA 5.8
PCA 60%
Gleason 3+3, 4+3
Surgery 9/12/2013
Negative borders
Posted 9/24/2013 6:26 PM (GMT 0)
Hang in there... it takes time for the equipment to sort things out again.
Go pee before you have the urge.
Walk a lot and do the kegels.
It will get better.
Posted 9/24/2013 6:48 PM (GMT 0)
It's a little disheartening because you expect to be further along - I know I felt that way and a little worse. Three days after my catheter was removed I found this forum which was a tremendous relief. The guys on here know what we are going through. So just hang in there. Time and kegels. I'm 3 months out and not quite dry yet, 2 dribble pads a day, one at night and one during the day but it is getting better. My doc has arranged for physical therapy just to be sure. Others have been dry quicker, some longer but today I received my first zero - so I will take that all day.
Posted 9/24/2013 7:02 PM (GMT 0)
The average time to reach full continence is probably 2 to 3 months. It's one of things the surgeon generally gloss over, probably because many men would forego the life saving surgery they need.

Read up on kegels, and/or talk to your urologist. Most men on here have been through the dribbles, and most conquered it. There are options if you happen to be one of the few who continues to have problems.

Good luck. Just be patient, and you too will make it through the dribble period of your recovery.
Posted 9/24/2013 7:42 PM (GMT 0)
I found sitting on the toilet to pee helps. Your aim can be all over the place after surgery. I am 14 months out and still using 2-3 pads a day. Everyone heals at their own time. Most of us are in such a hurry to get the catheter off then are shocked at the incontinence issues we have to go through. We knew all this before surgery but still don't like it when it happens.

Good luck, hope you dry quickly and don't have to deal with it as long as I have.

Bill from Florida cool
Posted 9/24/2013 7:58 PM (GMT 0)
Thanks for your help-. I guess my question is more focused: When after catheter removal did you have your normal first pee, that is, you felt an urge, you went to the toilet, stood and initiated flow, put your penis back, and went away? I know there will be ten soggy pads on either side of that event, but when did that event FIRST happen?
Posted 9/24/2013 8:02 PM (GMT 0)
I wonder what will happen in three weeks when I go back to work as a University prof. I bought all black Dockers to hide any accidents. And will use Depends, unless somebody can recommend a better version. Now I am using Depends with an extra pad I had to the crotch. BTW, what are these Kegel exercises? I have been peeing a stopping midstream using my muscles, as an exercise for a couple years. ls it more than that?
Posted 9/24/2013 8:35 PM (GMT 0)
A Kegel is what you described only hold it for about 10 seconds then release. Wait at least 10 seconds and do another one. Do a total of 10 Kegels 3 times a day. This helps build up your pelvic floor muscles. When you had your surgery, the surgeon removed a sphincter muscle near your bladder. That is why you leak.

It took a while before I had my first pee. Sometimes you feel like you have to go then just a dribble.

Just remember, you went through major surgery, your plumbing is going to take 1-2 years to get back to normal. This is the "new normal" for now. Don't fight it, accept it. Things will change over time.

Bill from Florida cool
Posted 9/24/2013 10:43 PM (GMT 0)

Hi

It's very normal to dribble when standing up from a seat during the earlier stage. If u r well prepare for it...do a few 'kegels' before getting up......it helps.

Anyway like the others said....take times, just be patient.  Practice the squeezing of pelvic muscles exercise.

All the best to your recovery.

Posted 9/25/2013 1:06 AM (GMT 0)
How do I do the kegel exercises when I do not have a stream to interrupt like I used to pre surgery?
Posted 9/25/2013 3:08 AM (GMT 0)
The sitting on the toilet advice is good, as you even have less control at this point on the aim and accuracy part. For most men, it's a series of slow improvements. The suggestion of 2-3 months as being "normal" sounds about average to me as well.

This is the part that takes great patience on your end. Stay away from juices, carbonated anything, etc, but don't deprive your body of liquids (as in plenty of water). It's better to drip then to get yourself dehydrated.

Hopefully, you too, will see small baby step improvements over the next few days and weeks. Staying dry at night seems to be typical for most men, when you are off your feet.

David
Posted 9/25/2013 12:40 PM (GMT 0)
Edfu,

I've been exactly where you are and I can tell you that it will almost certainly get better. The process is maddeningly slow, and come in fits and starts, but it will happen. I seem to be one of those men who will require further surgery to become fully continent (currently thinking about getting a sling installed) so you can pretty much count on doing at least as well as I did/am doing.

The first couple of weeks after my catheter came out I was totally, 100% incontinent while standing up. I had some control while sitting or laying down but as soon as I stood up things let go. If I stood up and hurried to the bathroom I could sometimes direct the last little bit into the john but I was catching the end of an event already in progress. Gradually, over the course of the first month or so, I got to where I could make *most* of the urine wind up in the pot and not in my diaper.

My next milestone (which I despaired of ever reaching) was to walk a mile and have any pee left when I was done. I didn't expect to be dry after my mile -- I just wanted to not be empty. I got there at about three months out with the help of a biofeedback technician. (More on her later).

I continued to improve slowly. At about a year out I was able to graduate from Depends (Pull-up pants) to Guards (pads that stick in ordinary undies) and now (at 15 months) I am down to one to three pads a day (depending on how much time I spend standing up during the day.)

You asked how to do your Kegels without a stream to start and stop. Actually, the instructions most guys are given are to do the exercise while you are not peeing. If you *can* start and stop your stream you can do that a couple of times to identify the muscles you are trying to exercise but mostly you do your kegel exercises at other times.

If you don't dry up after a month or so you might ask your doctor about biofeedback training (also called pelvic floor physical therapy) which can be helpful in a lot of cases. The way it worked for me was that my technician stuck sticky electrodes (like EKG pads) to my plumber's crack area and was able to measure the contractions of my pelvic floor muscles. I could watch a line on a computer screen to see when I was contracting the right muscles. The machine would test me and give me a numeric score. That score was really helpful since it gave me something concrete to show I was making progress.

So the good news is that you are really likely to do better than I have (I'm a big-time leaker) and I am doing OK.

Good Luck.
Posted 9/25/2013 3:44 PM (GMT 0)
As Peter said, you do the Kegel exercises when you are not peeing to build up your other sphincter muscle that is much lower than the one you had by the bladder. 3 sets of 10 Kegels as I said in an earlier post.

Since your doctor didn't tell you about Kegels, does he have you on any kind of ED routine to get blood flowing again to wake up the nerves? Can't wait to long to get working on that area also. If you don't use it you loose it, as they say. yeah

Bill from Florida cool
Posted 9/25/2013 4:22 PM (GMT 0)
First few days post catheter are the worst. I found on the 3rd or 4th day when I got up from a sitting position, I had about 5-10 seconds to get to the bath room. Usually didn't make it, eventually this increased to 20 seconds and I made the effort to get there. By week two I had one minute which gradually increased I'm now 4 months out and have been dry for last three months, was fortunate to be dry at night from the get go, although first two months I was up nearly on the hour all night long. Before surgery I'd drink 2/3 pot of coffee, turn in and sleep 8 hours. Everyone is a little different, just remember, "your a work in progress and be patient with yourself". It really does get better quicker than you think it will
Posted 9/25/2013 6:03 PM (GMT 0)
Last night was a three Depends night but I did have one break through! I woke up at 3:28 am having to pee, stood up and went to the toilet and initiated a regular (seated) pee stream. Now it was total sog before and after, but hell its a start. I had my open prostatectomy done at Johns Hopkins 2 weeks ago. I joined in on several studies; one with blood samples which was a search for new prostate cancer marker; the other, involved a medical grade vibrator (Viberect) which might speed both continence and ED recovery, I couldn't join that trial because I had to have a physical at Hopkins every 4 months and I am about 800 mi away. I just might get the viberect and try it alone, although I am sure my 8th grade parochial school nun would not approve.
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