Dealing with incontinence

User

Posted 17 Feb 2016 at 21:36

Mistry

Sounds like your Dad is committed to beating the incontinence so remember the sheath is an aid to recovery not a substitute.

On the coloplast site I answered the survey and because I said I had NOT used a sheath before all I got was the cardboard measure guide and a letter saying they would follow up with a phone call. I got my sheaths and bags on prescription through our local incontinence service, they issue the “Bard Spirit” sheath, same principle as the “conveen”. http://www.bardmedical.co.uk/Page.aspx?id=1455

Like others no problems with them falling off, quite the opposite, can sometimes be difficult to remove, but well worth the effort ,I got a medical adhesive release spray with the sheaths, but make sure the spray is removed from the penis before fitting a new sheath. The incontinence nurse told me to replace the sheath after 24 hours and the bag after one week.

I would wear one when going out and leave it off if I was at home or not going too far. I wore one at night but would still get up if I felt the urge to urinate, this was for two reasons. One reason was because I only had 500 ml bags, but mainly to maintain the routine of urinating normally and I was still measuring my flow rate. I wore pyjama bottoms at night to keep the bag etc all together. During the day I also used a catheter leg/ thigh strap for additional support, a three mile walk with the dog and kicking a ball and the bag stopped in place.

I would have a small leak almost every hour, on one occasion I was concentrating on a puzzle for three and a half hours without a leak, so trying to put the problem to the back of your mind may help. A surgeon also asked me “ do you think about it all the time, try to forget about it”?

As regards the pads slipping is he wearing elasticated underwear, tight enough to keep things in place but not too tight, I use Tenna2 pants which have an adhesive strip to hold them to your underwear.

Thanks Chris

User

Posted 02 Mar 2016 at 13:15

Hi guys,

Just an update, received the coloplast sheath and had to get a smaller size.

The problem he is having is that his penis has shrunk since op and is probably only about 1 inch in length now

The sheath therefore does not fully cover the penis so it is loose at the end but it is ok on the width. He feels like it will slip off as the sheath is not covering the whole penis as such and only a small amount of the sheath is actually attached...

User

Posted 02 Mar 2016 at 14:08

Mistry

My sheaths were a different make to your dads, I had a couple of occasions where the sheath was not far enough on and the adhesive inside the sheath stuck together and when I tried to urinate the sheath filled up and then all leaked out at the base of the penis.

Not sure of your dad's situation. My Urology nurse recalled a story of when she worked in an elderly person care home. They would wash the male patients penis vigorously to stimulate it before trying to fit the sheath.

Sounds like you could do with an appointment with a professional incontinence nurse, the last thing you need is to create another problem.

Thanks Chris

User

Posted 02 Mar 2016 at 17:03

If the sheath fits snugly at the top, it should not be a problem if it is too long. However, the key is to make sure that the path to the bag is not obstructed in any way. The small contact area will be an issue if any back-pressure builds up because of a constriction, and there could be a leak. Provided there is not a constriction, the urine will take the path of least resistance and head for the bag.

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User

Posted 02 Mar 2016 at 17:17

In the free sample pack that Coloplast send you there is a shorter version of the sheath included and available for order if required...

Luther

User

Posted 06 Mar 2016 at 16:16

Tried the shorter sheath but it still came off. It appears there is not enough skin for it to attach to.

User

Posted 06 Mar 2016 at 19:02

There is another product from the pump people. "iMEDicare afex active" does a similar job but you don't have to stick anything on. Not all that cheap though.

User

Posted 06 Mar 2016 at 20:27

Hi Ravi

I see the bulk of this post has been about sheath use, and whilst that's great, I'd advise you don't lose faith in the pelvic floor exercises. If your father isn't able to isolate and identify the correct action to help with continence then there can be a tendency to have a go at the exercises, do them ineffectually and then give up in frustration, blaming the exercises as useless.

Now I don't know if that is the scenario your father fits into. But it is probably as well to check he's doing them as effectively as possible.

Here's a couple of video links that he can listen to , replay, pause and look at and practice in his own time. Some people are just given written instructions how to do the exercises and it doesn't work for them:

https://www.youtube.com/watch?v=cSBd7tn0SeI

https://www.youtube.com/watch?v=pawaZ9kSCZI

It might be worth looking at how he's sitting- to begin the exercises before he even thinks of the challenge of standing up. Can he achieve the desired contraction - and not just some random tightening in that region? If he's feet up on a stool, can he keep control of that contraction whilst slowly lowering one leg to the floor - then putting it back on the stool. The other leg and repeat, Can he lean forward slowly when he sits, all the while holding the contraction. can he hold the contraction and slowly reach one arm out to the side.

Breaking it down this way, he may be able to find a low level that he can work at and aim for consistent performance at that level over a few days before adding a LITTLE extra challenge . Any progression will then give much needed positive feedback. Keep your Doctor in the loop on things, don't tolerate it alone.

User

Posted 06 Mar 2016 at 22:46

Hi Walnut, perhaps you could read the posts more carefully before you start offering advice. He already visits the incontinence clinic where they have checked he is doing the exercises properly. There is no evidence that PFEs help anyone whose incontinence is any more serious than immediate post-op.

Edited at the request of the moderators - I hope I didn't offend anyone

Edited by member 08 Mar 2016 at 00:11 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 07 Mar 2016 at 09:09

I have beaten incontinence twice now but each time with a different approach.

Our hospital was due to have a new da vinci robot so I waited four months for my RARP. In that time I did my PFES, doing them more frequently as the OP approached. 4 days post catheter removal I was almost dry just the odd small accident. I carried on doing the PFEs hit and miss for about a year. I wore a pad for a few months post op just in case and if I was going on a long car hour.

Following several dilatations and 90 days of catheterisation I was left incontinent in Nov 2015. I leaked anything up to 200 ml a day and on one occasion 170ml in one go. I was doing my PFEs again but there was no improvement. I could not stop mid stream, advice from incontinence nurse only try this to test your function do not do it on a regular basis. I used the sheath system for several weeks and that gave me the confidence to do bladder retraining.

In mid January following a post about PFEs I decided to abandon them, yesterday I leaked one ml the week before was 3ml on a bad day. I weigh my pads to get the leakage.

A cystoscopy five weeks ago showed my sphinter was not closing correctly. Last week I saw my urethra consultant and queried why my continence was improving if the sphinter was not closing correctly. He said the pelvic floor muscles were controlling the flow.

It is possible the cystoscopy or more likely the urodynamic test disturbed something. My own theory is that I decided I was no longer going to be incontinent and it is mind over bladder.

There are some contradictions in there but that's how it is.

We all recover in different ways. I was a fan of PFEs now I am not so sure.

Thanks Chris

User

Posted 07 Mar 2016 at 11:35

At my last review with the consultant, even he had to admit that after the initial strengthening process of weakened / damaged muscle caused by surgery it was highly unlikely that further PFE's would be of any benefit in my case...

With a smile and a wink he said, " Of course I won't tell you to stop doing them as they will do you no harm and it's at nil cost to us "

Those that were lucky to regain continence quickly will no doubt put it down to how fit they were, how many PFE's they did before and after surgery... How many eggs they have for breakfast.... what colour pants they wear... etc.. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif Truth is we will never know....

Those of us not so lucky have done all of those things and more, but we still keep plugging away in the hope that one day we will become dry....
Until then we have to learn to manage the situation, or look into the possibility of surgical intervention with the aim of improving the situation...

Luther

User

Posted 07 Mar 2016 at 13:18

Mistry

Has Dad been given a vacuum pump for penile rehabilitation, if yes does he use it ? Sorry to be personal but has dad's penis always been short or is it the aftermath of the OP. Using the pump may help gain some length and make using the sheath more practical.

Luther

Love your take on things, not quite the colour but I am now wearing quite tight pants.

I drink caffeinated coffee, strong cafetiere coffee, wine, even in the late evening.

Thanks Chris

User

Posted 09 Mar 2016 at 13:11

Originally Posted by: Online Community Member

Mistry

Luther

Love your take on things, not quite the colour but I am now wearing quite tight pants.

I drink caffeinated coffee, strong cafetiere coffee, wine, even in the late evening.

Thanks Chris

Hi, Nope he has not been given this.

His penis has shrunk since the OP.

Thanks

User

Posted 09 Mar 2016 at 16:12

Hi Mistry

Is this any use?

Alternatives to a sheath

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User

Posted 09 Mar 2016 at 20:01

Mistry

I would advise or persuade dad to get in touch with an ED consultant/ nurse either through his GP or Urology department. Getting and using a pump has numerous benefits. The favourite phrase on here it use it or lose it.

Some interesting products on Tony's link.

Thanks Chris

Lyn,s reported below refers to an advertising post, the moderators have removed it.

Edited by member 28 Nov 2019 at 06:59 | Reason: Not specified

User

Posted 26 Nov 2019 at 21:22

Reported

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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