Incontinence very bad at 3 weeks post catheter removal

Anyone else had this problem? I would appreciate any comments.

I had Robotic RP on 4/2, catheter removed on 4/9. Gleason 3+3=6, PSA 3.5 (jumped up from 1.5 the year earlier), final biopsy showed no cancer on the margins. No erection yet, of course, but I really don't care about that at this point. Doc said he spared all nerves, outlook is excellent. I recovered very quickly,  except for 1 problem......

Whenever I'm in a standing or walking posture, I leak continuously. Using anywhere from 10 - 15 pads per day. The leak is so bad, my bladder never fills. I'm doing 10 sets of Kegel excercises a day. I don't leak when sleeping, and in fact my bladder typically fills to 8 - 12 ounces at night. I also don't leak when sitting. But as soon as I resume standing, the faucet turns on.

I'm really getting nervous about this, and would appreciate hearing about similar problems / outcomes that some of you "veterans" have had.

Thanks...

Hi ~ Bill & Loved Ones,


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We are truly pleased you have reached out to all of us! The Helpful Hints page will help direct you to a few… threads…to get you started. There are soooo many ~ take the time!!!

Hopefully ~ as time goes on you will see positive change. You’ve been on the healing/recovery stone now for 18 days….. you still have a lot of healing going. You’ll get tired of us telling you this… but ~ give yourself time…



There are several threads with Kegel information. Hopefully you will find something here that can help you find the right “schedule” for you. Kegels can tire the sphincter muscle so you may want to revamp your daily program. See KW's Journey,



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I agree with Tamu. Go easy with the Kegels. And don't flex too hard. Just take it easy and be sure you are doing them properly.
I leaked like hell for weeks after surgery and was running to the head constantly. I'd make one false move and the leaking would start. For me, the trick was to continue making those false moves -- it seemed like that's when my situation improved. It took me about seven weeks till I could lift that gallon of milk, turn around to back the car up; bend and pick something up etc. without a significant leak
Also, at about week five, I started to try to hold on before urinating -- first for a half hour, then an hour if possible. It helped immensely and gave me confidence. Now, I have very good control, but I'm almost four months out.

Patience -- UGH.
It isn’t easy. Now I'm struggling to have the same patience with the ED thing.
One day at a time buddy. We'll all get there.
Best to ya!

Eglman, PianoMan:

Thanks for your inputs.  You both said that you had a lot of leakage.  What I'm concerned about in my case is the fact that I drip so steadily when just standing,  that my bladder never accumulates any volume of urine..... it all flows into the pads.  Therefore,  the only time I'm able to consciously urinate is during the night one or twice,  and when I wake up. Have either of you had this experience,  or do you just have the usual stress incontinence when moving,  getting up from sitting, coughing, etc?

Thanks... Bill

    Hey Bill,  I seem to be one of the worst leakers on here.  Check out my "kw's Journey....."  I have the exact same symptoms as you (at 6 months post op).  I fill and hold great while sitting and sleeping. I Leak all day at work. I'm usually on my feet all day at work.  I have to change pads by a time schedule to keep from "breaking out".  I have had two treatments of collagen injections which did not improve anything.  Each time he has run a scope up the urethera he says the sphincter muscle looks and works great. 

    I would also cut back the Kegals to 3 set's of 10 a day.  At your point you could be easily overdoing it.

    Don't mean to scare you with my story.  But there are a few of us that have more leaking than others for what ever reason.  I have seen two people on here that both went to the same "robotic" Dr.  One is doing great with the leaking.  The other is having as bad of a time as "we" are.

    Remember....there is alot of evidence out there that says that it can take up to one year for everything to start working agian!  Take your time and try not to worry too much.

    Holler at you later...

    KW

Hi KW.....

Sorry to hear you are having such a bad time as me after 6 months. From all I have been able to learn about the collagen injections,  they are a marginal solution at best.  It certainly is a scary situation,  especially when considering possible solutions such as artificial sphincters and sling surgery.  Of course,  those options are still out in the future for us.  Hopefully our situations will resolve before then.  Oh well,  its' time to change my pad again!

Thanks....Bill

Hello Bill

Welcome. I am Kitt and I am glad to meet you. It looks like you got some great advice and going to the source of experience is great to get answers you need.

Also talk with your surgeon and see what his/her opinions is.

Take care of you.

Bill,
Hang in there! I never had the same volume of leakage that you have, but three weeks post-op I was sure I'd be wearing pads for the rest of my life. It has now been almost four months since my surgery, and I'm down to one pad a day, and I change that for hygene more than fullness. I had some real improvement when I started doing my kegels only when I urinated. Starting and stopping the flow as I stood there really showed me the muscles I needed to work on. I still leak small amounts when I stand or sit or strain, but I now believe thst someday soon I'll be totally dry. Best of luck and like so many others have said, you really found a wonderful forum here!
Mike in Webster, NY
June 2005 - Age 53 PSA 4.8 at regular physical
October 2005 - After several rounds of anti-biotics, PSA 5.2 at Urlogist
November 2005 - Biopsy negative
July 2006 - PSA 5.9 at regular Physical
October 2006 - After several more rounds of anti-biotics PSA 8.1
November 2006 - Second biopsy - Positive
December 2006 - Gleason (3+4=7) CT Scan and Bone Scan Negative
January 2007 Robotic Prostatectomy - Tumor confined but larger than thought, only one nerve able to be spared. Margins clear.
February 2007 - Three to four pads a day, no erection with viagara.
March 2007 - Down to two pads a day, had first intercourse with Erecaid pump and bands, otherwise still flat tire.
April 2007 - PSA 0.02 and a great relief! Down to one pad a day. Still unable to achive erection without pump. Patience Patience!!!!!!
Next appointment July 2007

Hi Ben and Mike:

Thanks for your replies.

Ben,  it does seem like your situation is a lot like mine.  I always expected to have some degree of incontinence,  but not the total incontinence I experience during the day.  As I mentioned in my initial post,  my bladder NEVER accumulates any volume of urine,  it just drips out as fast as my kidneys supply it.  Is this the same experience you had when you were using 10-20 pads a day? Or were you able to actually build up a portion of urine in your bladder?

Also,  as I mentioned,  I am able to accumulate 8 -12 ounces at night, and when urinating my stream is super strong.  I try to kegel it at this point,  and can only slow it down,  not stop it. Also,  at times,  I begin to leak as soon as I get out of bed, before I get to the bathroom. Did you have similar experiences?

Thanks,  Bill 

Hi Bill: Sorry for the late reply. You asked if I'd had leaking not related to stress/movement and the answer is yes. During the first couple of months, i would leak spontaneously at times during the day -- generally early evenings and especially after having my beloved beer and/or wine.


After surgery, during the first three weeks or so I would gush from the slightest bit of stress. As I've said before -- one false move like trying to pick a coin off the floor, swallowing a little water down the wrong pipe and coughing etc. For some reason, sneezing has the opposite effect on me -- makes me feel like I'm doing a naturtal Kegel. I've never had the slightest drip while sneezing. Go figure. Coughing!! --- Fuggedaboudit! Coughing opened the flood gates and at this stage of my recovery, it hurts my stomach muscles, which are probably still healing.



If you're holding at night, it sounds like your sphincter is ok, just needs to strengthened up a bit. In my case, I have really lightened up on the Kegels. No dily reps. -- I just gently flex those muscles when I think of it during the day. At first, I was fanatical about the Kegels but in my case, since I stopped being so diligent about them, my bleeding went away and my incontinence improved drastically. As of last week (3 1/2 months out) I have not worn a pad. I see little yellow spots in my jockies almost every day, but I probably had that going on all my life.



BUT -- DON't ABANDON THE KEGELS, BASED ON MY EXPERIENCE!! EVERYBODY IS DIFFERENT AND HAS THEIR OWN ISSUE(S) RELATING TO INCONTINENCE.



I believe our pelvic muscles will have to be exercised for the rest of our lives. It's just a matter of how intensely and how often.



Oh, one more thing. How much liquid are you consuming each day and are you spacing it out? I remember being told to drink 3 1/2 quarts of water each day after surgery. That's 14 eight-ounce glasses of water a day!! Add to that the coffee, soda, juice, etc. and it was no wonder I was running to the head like crazy. It's important to stay hydrated, but that was a lot of water. Now I'm back to my old fluid intake, which doesn't include anything near 3 1/2 qts. a day of pure water.



Best to ya! You'll get there.

Thanks Berb....

You're right,  our situations are very similar,  with the exception that you have a much better philosophical outlook than I do!  I'm just coming off of 5+ years of dealing with both parents in nursing homes,  both with severe incontinence issues,  and this is really hitting me hard mentally.

Anyway,  my uro suggested taking a few biofeedback sessions just to make sure I'm doing the Kegels OK,  so I will start that next week.  It seems that from 0 to 18 months post surgery,  there isn't a whole lot they have to offer us in terms of solutions other than kegels.  Hopefully,  we will clear up to acceptable levels before having to consider artificial sphincters and sling surgery.

Good luck to you.

Bill

Bill,

I too was skeptical at first. However, now I'm a big fan of the bio-feedback sessions. There is one procedure they use to alter your recruitment pattern of the pelvic floor muscles ("Kegels") that seemed to help a lot:

The sensors used to detect and coach contractions can also give a small electrical stimulus. During this treatment, I was asked to flex at 10 per cent strength every time the (tingling) shocks came on. It seemed silly at first. However, I am working 14 hour days and lifting tons of Produce and only leaking one half pad a day. In the last three weeks/sessions of electrical stimulus and "elevator kegels," I have gone from 8 pads a day to less than one.

This treatment REALLY helps with learning the "elevator" techniques that mimics exactly what seems to work when walking and lifting. Your kegel muscles coax the unconsciously controlled bladder valve to open and close. The bracing done with the kegels for lifting and standing cannot be maintained for Berb's marathon!

Don't let the uncertainty and "chrysalis of unknowing" surrounding your perfect health keep you from taking flight under the wings of the Spirit of God.

Keeping you in good thoughts.

CCedar

Hey Bill,

You have lots of company in the "drats - I'm still leaking" department. Like everything about PCa it takes time and patience. This cancer grows slowly (usually) and it seems that we recover slowly. Its not like a hernia or appendectomy where after a specified period of time we are all well. Everybody that has PCa seems to have different recovery experiences and yet we do share so many common characteristics. Continence and potency seem to be the main areas where we differ. Give it time. Our friend KW is a great example of the patience that we need.

Like Dickie V. said, "Don't give up - don't ever give up."

Jim