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Still Incontinent after biofeedback

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Posted 10/3/2007 12:26 PM (GMT 0)
It has been a while since I have posted, but I have kept up with others daily.  As you can see from closing, we have not had a typical journey from the beginning.

My husband is now 12 weeks post surgery and still having issues with incontinency.  Yesterday was his last day at biofeedback (all insurance will cover).  He just cannot seem to find the muscles for the kegels.  He had been doing them wrong before bio.  It's not that he is not trying - he just can't get it.  First thing the nurse asked him yesterday was "are you dry."  He got the impression from her that she doesn't think he is doing exercises (kegels) but I know he is trying.  We have read everything we can find on how to do them and he just can't seem NOT to use either the stomach muscles or the buttocks.  Believe me, we have tried everything we have seen on this forum and elsewhere.  He is doing all the other exercises and has to walk four blocks to work and back from parking space plus walks during lunch, etc.  Yesterday was the first day in quite a while that I have seen him so frustrated and down.  He had been positive and upbeat until last session at bio.  Said he didn't sleep much last night because he was dreaming all night of trying to do kegels.  Any suggestions??  Are there any other exercises that would help build the muscles??  He goes most every night without leaking and can make it to bathroom first thing in the morning.  The rest of the morning he leaks a little (squirts) when he starts to walk after getting up.  By afternoon things are starting to go downhill.  Wears a Depends with male pad in it.  Probably uses 2 - 3 pads a day.  This past Sunday he had a lot of blood in urine.  I think he had stood too long at church.  He stood before and while teaching SS class and after class for a long time before finally sitting.  He came home and went to bed and slept for a while and we haven't seen any more blood.  Could also have been that Couminen level was high (INR had been high the week before).  Should find out INR level today from blood draw on Monday morning.  He really has come a long way since days following surgery, but he is ready to be well. 

Also, he is still experiencing pain in the upper thigh (outside) of leg that had clot.  Has had some swelling in leg also but that is better.  Had doppler done again in both legs 3 weeks ago.  No clots.  Too much walking causes additional pain.  Going for bone scan this Thursday (had one a couple months before surgery that was clear), going for MRI on Sunday (that's right on Sunday afternoon - seems they schedule on weekends too) and to a neurologist on Wednesday (next week).  Both our urologist and PCP don't have any answers.  X-rays of hip area did not show anything.  Extensive blood work showed nothing abnormal.  Both doctors are working with us and together to try and find reason for pain/swelling.  Our doctors have been great.  Both suggested next step might be neurologist. 

First PSA done but no results to doctor as of yesterday.

Thanks for your continued support, suggestions and prayers.

MP

Robotic surgery 7/9/07

In hospital until 7/18/07 because of ileus after surgery

Home for three days, back in hospital with blood clot.  Home on 7/26.

Age 58 (57 at surgery time)

3+3 (cancer in two cores of 12 core biopsy - 40% in one and 5% in other)

Cancer contained, margins clear

Posted 10/3/2007 1:26 PM (GMT 0)
Hi there!

It is indeed a frustrating journey to dryness, but it WILL happen. The easiest way I heard explained to do the Kegals was to imagine you are trying to draw water up a straw using your penis as the straw. That zero's in on exactly the right muscles. (Neither the buttocks nor the abdominals are used to do this, but rather that little inner muscle which this excercise will put into use.)

Everyone takes a different amount of time to achieve continence. Is he totally incontiinent? Has there been any improvement?? In our case I kept track of the pad packages on the calendar. The first week the whole 52 were used; then it took 2 weeks to use a package; the third package lasted approximately 3 weeks, etc. That way we could see the progress, because it seems as long as there's any leakage we forget how much was in the beginning. It took Bob around 6 months to totally become contiinent and probably 8 before he gave up wearing a pad.

Good luck!
;o) Linda & Bob
Posted 10/3/2007 1:56 PM (GMT 0)

Thanks for your encouragement.  He is not totally incontinent.  He has squirts after getting up and starting to walk but can usually make it to the bathroom without losing everything.  There have been a couple exceptions on a really bad day.  He has gotten better from when the catheter was first out, but seems to be stuck where he is now.  We have tried the straw experiment.  For some reason, he still uses the stomach muscles.  I can feel/see them tightening.  Go figure......

MP

Robotic surgery 7/9/07

In hospital until 7/18/07 because of ileus after surgery

Home for three days, back in hospital with blood clot.  Home on 7/26.

Catheter in for 22 days due to all the complications

Age 58

3+3

Cancer contained, margins clear

Posted 10/3/2007 2:34 PM (GMT 0)
Ehud,

The idea behind not tightening the stomach muscles is to isolate the pelvic floor muscles.
These ("kegel sphincter") muscles (in men) start above the pubis and go through the crotch area into the buttocks area.

If your husband is continent while sleeping, one thing that helped me was to drink 8 oz. or so of water before retiring.  When I awoke and needed to go, I would stand over the toilette and cough - and try to hold back the stream. 
Some describe this exercise as "like trying to hold a dime between your cheeks."
Another valuable exercise- if no one is home - is to walk up and down stairs with a full bladder - with a styrofoam cup or old rag to catch leaks - to teach a "coordinated control."

Twelve weeks out is just AT the time most patients gain control (12 to 16 weeks).
As I got stronger with my kegels, just before I gained control at week 14, I would "kegel to music" while driving.  It's not just about ON-OFF exercises.
It's sort of like a "dial tone" but here rather a "muscle tone" with different sets of muscles recruited to work as another set gets fatigued.

From what you have said, it sounds like your husband will become continent suddenly -  sometime in the next few months. Most likely sooner. 
Suddenly one day you will notice the pads are mostly dry and a few days later you will take the leap to pad free.
In the meantime, do "elevator kegels"
    - (vary intensity - up and down) to your favorite music..... all the time.
Let the bladder get full and cough or walk the stairs.
Be patient and use a barrier cream daily and fungicide cream weekly.

I believe you will be dry soon.

CCedar
ICTHUS!
Posted 10/3/2007 2:44 PM (GMT 0)
There are different solutions for different folks. I was able to stay relatively dry overnight, and would use from one to two pads throughout the morning. But as the day wore on, and my muscles tired, I'd be up to from to 5 or more for the day. Many times I'd change far before the pads were really wet due to schedule, walking distance, heat, any number of reasons. A couple of times, I misjudged.

After 4 years my solution was to have an artificial urinary sphincter (AUS) installed. It was a life changing decision. No more worries about accidents, no more having to carry a supply of pads around, no more pants with extra pockets to hide them, no more embarrassing moments, no more restrictions in my schedule.

I understand this solution may not be for everyone, but I feel it should be seriously considered for anyone dealing with the physical and emotional problems I suffered with.
Posted 10/4/2007 3:08 AM (GMT 0)
All I can say is to hang in there. I am approaching 1 year and I still soak up to 6 pads a day. I also sleep dry and awake to a full bladder. I can also make it to the toilet the first time without leaking. But after that I leak all day while on my feet. There is some information out there thay shows it can take up to 18 months to get control!

Hang in there....KW
Posted 10/8/2007 4:48 AM (GMT 0)
Finding your Kegels.
In the middle of your stream of urine, stop and start the stream several times. The muscles you use to do this are your PC muscles. At first, you may find that you are also squeezing your anal muscles; as you become experienced with kegel exercises, try to separate out the muscle groups that you are able to exercise by squeezing.
# The muscles to be exercised are the pelvic muscles. These can be felt by purposely stopping the flow of urine in midstream and starting again. The muscles that squeeze the urethra and anus are the ones involved.
# Remembering what it felt like to control these muscles during urination, try to contract them when not urinating. If the stomach or buttocks muscles tighten, the muscles are not being exercised correctly. Good luck. Uncle Dan
Posted 10/8/2007 9:44 PM (GMT 0)
chas036, I don't agree completely. While recovery is probably quicker in general for people who are in shape, that's not the most important thing, as I understand the anatomy. The area around the prostate/sphincter/bladder is a very delicate and very complex structure. Any cutting there is going to knock things out of whack. A micromillimeter too close to the sphincter, and you can have a muscle that doesn't work like it should. Also, there's the matter of scar tissue, which when it grows in that area, can impinge on the normal functioning of all of these organs. I have personal experience with strictures, see my thread on the topic.

I was in really good shape pre surgery and still am, 6 months post surgery. My doc says my sphincter is one of the strongest he has seen. But I am still leaking, and he says that won't change without intervention.

So, yes, get in shape. But that's not the most important variable in the equation, IMO.
Posted 10/9/2007 8:33 PM (GMT 0)
Chas,

My experience is similar to Jefnef. I'm very fit (ran a marathon on Sunday), not overweight, but still incontinent after 9 months. Like Jefnef, my doctor says I'm unlikely to recover continence and will require an artificial sphincter. I 'm clearly a fan of being fit though, and believe it plays a role in recovery from the operation in general.

Berb
Posted 10/9/2007 11:26 PM (GMT 0)
Don't rule out the artifical sphincter. It can be the answer to incontinence.
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