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Dealing with incontinence

User
Posted 15 Feb 2016 at 23:36

Hi All,

Im Ravi, my dad had op to remove prostate cancer end of Nov last year. 

When speaking to consultants they did not advise incontinence would last this long so my dad is very upset and depressed about this.

As he was a postman, he is unable to return to work as he has constant leaks and has to change Tena pads Super (think Level 7?) at least 3 times a day. 

 

He has been doing the pelvic floor exercises but having no luck, he also wakes up about 5 times at night to use the loo but only a few drips come out. 

He is fine sitting down but as soon as he stands up he leaks and runs to the toilet but most of the time it is too late. 

I feel really bad for him as he cannot leave the house without worrying about leaks and is becoming really depressed about this. 

 

Please help

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 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

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User
Posted 16 Feb 2016 at 01:27

Hi mistry,

Sorry your Dad was diagnosed with PCa and has suffered leaking since. Men should be told before the operation that this may result after surgery for various lengths of time. In fact in a small number of cases this can be permanent but hopefully not for your Dad. However, it is much too early to speculate how long it will take before the situation improves significantly.

After my radiotherapy I suffered from urgency and frequency for a couple months or so and my GP agreed to my request to have a system whereby a bag is strapped to a leg with a plastic tube that in turn connected to a sheath on the penis. The bag has a valve so the urine can be disposed of at a convenient time. A box of sheaths is provided as once used this part of the system is not reusable, the sheaths incorporating a medically approved adhesive. A larger night bag can be added as an extension. This worked very well for me although in addition to the bag securing strap, I found I needed the elasticated stocking of the correct size to stop the bag slipping down my leg, but at least I was dry. It might work for Dad but with lots of walking and possibly steps he might need to devise some additional way of stopping the bag from slipping down his leg. He would also need to wear long trousers rather than the shorts all the posties I see wear. Maybe worth considering for at least a time. I believe the system was from Colorplast.

Barry
User
Posted 16 Feb 2016 at 08:22
Hi Ravi

Here you go : Conveen products from Coloplast. Without these, I would not have been able to get back to work for about six months. Can be obtained on prescription (free in Wales, check elsewhere) and they send samples to help find the right size to use. The bags take your mind off the problem of incontinence while healing is taking place.

Edited by member 16 Feb 2016 at 08:23  | Reason: Not specified

Tony

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

User
Posted 16 Feb 2016 at 08:49
Hi Mistry

Can I just confirm what Barry and Tony have already said that the Conveen system from Coloplast has been a boon for me. I contacted them direct via the internet and they sent samples to ascertain the correct size. Once we sorted that out (very fast response) they asked for details of my surgery and within 24 hours had arranged a prescription and despatched the product . With the bag I was able to enjoy my walks again and could get back to driving school minibuses where I am out all day. I can only say that it was such a great help to me but it means that Dad can still do his PFE's. I felt that the pads put extra pressure on me which contributed to my discomfort when walking but the external catheter system made me feel more comfortable.

I am sure Dad will improve but it does take time.

Kevan

User
Posted 16 Feb 2016 at 10:50

Hi Mistry,

Yep!... I go along with the previous comments regarding the Coloplast Conveen system.

Although I was fortunate enough to have retired early and didn't need to worry about work etc I still wanted to go out for decent walks across the fields with the dogs...
Depending on your dad's level of incontinence ( and it will improve over time ) he could perhaps consider the Conveen Active thigh bag...... this is what I used at the time.
This bag as the name suggests attaches to your thigh so dad could still wear shorts if he wanted to, but it only holds 250ml so maybe a leg bag with a bigger capacity would be the answer until things improved a little.

I understand only too well how despondent one can become when you are leaking all the time, but this Conveen system can give him more freedom until continence improves.

Luther

User
Posted 16 Feb 2016 at 12:51
I referred myself to our local incontinence service. I had one appointment that was useful to check I was doing the excercises correctly and to advise on things that irritate the bladder.
THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 16 Feb 2016 at 12:52
Mistry

100 percent agree with the others that the sheath system is a life changer.

Like the others I have used the external catheter and the good news, it is a life changer, the bad news is your consultant or incontinence nurse may not prescribe it at this early stage. Many urologist thinks it hampers recovery post RP, another down side us the do stick very well to the penis and even with a release spray you may start pulling and stretching the foreskin( assuming you have one).

I was lucky to regain my continence very soon after RARP but lost it 18 months later following a series of operations to the urethra. I was leaking upto 200 ml a day occasionally 170 ml in one go. After three months, almost overnight it has dropped to no more than 10 ml a day and I think it is still improving.

I was a big fan of PFEs, even used an app on my phone as an aid doing them. Following a post about the value of doing PFEs I stopped doing them but my continence has still improved, my incontinence nurse disapproves and said research shows they are beneficial.

Ask you incontinence nurse for a leaflet on bladder training, I did find the sheath system gave me the confidence to hang on that bit longer.

You may need to use a bit of emotional blackmail to get the sheath system i.e. getting very depressed.

Thanks Chris

User
Posted 16 Feb 2016 at 13:07

Originally Posted by: Online Community Member
Mistry

100 percent agree with the others that the sheath system is a life changer.


Like the others I have used the external catheter and the good news, it is a life changer, the bad news is your consultant or incontinence nurse may not prescribe it at this early stage. Many urologist thinks it hampers recovery post RP, another down side us the do stick very well to the penis and even with a release spray you may start pulling and stretching the foreskin( assuming you have one).
I was lucky to regain my continence very soon after RARP but lost it 18 months later following a series of operations to the urethra. I was leaking upto 200 ml a day occasionally 170 ml in one go. After three months, almost overnight it has dropped to no more than 10 ml a day and I think it is still improving.
I was a big fan of PFEs, even used an app on my phone as an aid doing them. Following a post about the value of doing PFEs I stopped doing them but my continence has still improved, my incontinence nurse disapproves and said research shows they are beneficial.

Ask you incontinence nurse for a leaflet on bladder training, I did find the sheath system gave me the confidence to hang on that bit longer.

You may need to use a bit of emotional blackmail to get the sheath system i.e. getting very depressed.


Thanks Chris


I have to agree with Chris regarding use of Conveen sheaths and some medics opinion /attitude to them.

My consultant said they can make you 'lazy' and encourage you not to use your pelvic floor muscles as you should if you use them too early in the recovery process.
I only used them when I was going out for the day or on long walks, so he was happy to prescribe them.
Luther

User
Posted 16 Feb 2016 at 16:28

One other thing I omitted to say but for those who use the system, it's a good idea to trim the 'long curlies' before fitting as it helps avoid getting stuck to the adhesive which can otherwise pull when removing the sheath.

Barry
User
Posted 16 Feb 2016 at 17:38
My consultant recommended a divice called dribblestop, it is a clamp that clamps the penis stopping dribbles, not as horrendous as it sounds! It wasn't great for me but my consultant says a lot of his patient's swear by it. It is rather expensive but may be worth a go.

Malcolm

User
Posted 16 Feb 2016 at 19:35

Mistry,

what underwear does your Dad currently use? Boxers or briefs?

November op, hoping to be continent now is ambitious. Some men never reagin control, okay some within weeks, it can take up to 2 years and then you an still improve. If there PFEs are not working consider stopping them. They did not work for me, just wore me out, so I stopped them and got dry naturally eventually, was about 8 months I was without pads.

No one course of action works for everyone. You Dad may need it try all sorts of things so help him.

A Conveen sheath*, a sheath with a tube on the end to attach to a leg bag*, and a leg bag* in the evening and at night will enable him to relax and wee at will. I did all the wrong things when I was "post Catheter". But it worked for me. There is no "one size fits all" solution to this. Consider trying different approaches.

* should be available on the NHS

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 16 Feb 2016 at 23:41

Talking about there is no one size fits all, this is true of the sheaths too, that were and I would imagine still are supplied in different sizes.

Barry
User
Posted 17 Feb 2016 at 00:33

Reminds me of a story from long ago. When John and I first got together, I went to the family planning clinic for advice on contraception (I was very young and knew nothing of these things). When I got home, I told J that the nurse needed to see him to get him measured up for some condoms - he nearly died on the spot!

I let him suffer for a couple of days before I admitted it was a lie.

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

User
Posted 17 Feb 2016 at 00:43

Mistry, has dad been referred to an incontinence nurse or clinic? If not, push him to ask his GP for a referral asap. He needs to know that he is doing the pelvic floor exercises correctly and also see what he can get on the NHS in youre area .... some men can get the Conveen sheaths or dribblestop while in other areas it might be they only give unisex continence pads (which do not get good reports on here).

He should be able to go back to work if he wants to though - he could change the pads more often than 3 times a day! Dark trousers might help a lot and there are special pants he can get, usually from the district nurses or incontinence team.

I would also be questioning why he cannot wee at night - is he not drinking after a certain time perhaps? This can make more problems. It may be that he doesn't really need to wee at night and is waking out of habit, in which case some bladder re-training would help. Has he been advised to try cutting out caffeine, and to increase the amount of cranberry or pomegranate juice he drinks?

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

User
Posted 17 Feb 2016 at 07:13

Originally Posted by: Online Community Member

Talking about there is no one size fits all, this is true of the sheaths too, that were and I would imagine still are supplied in different sizes.

They do come indifferent sizes.  Make sure if you are getting measured for a supply that you are assessed in a place where the temperature is the same temperature where you will be wearing it.  I was measured in hospital, in a very warm ward.  Tab home later at normal room temperature where everything shrinks, I found that the ones supplied were too big for me.  If they do not fit snugly, they will not seal and you will leak.  I used to use insulting tape, just to be safe and dry.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 17 Feb 2016 at 13:06

Wow - thank you for all your replies. This is very helpful.
I understand it is still early days and it will taking a number of months/years before leakages will stop.
We had a company called Manfred Sauer come over to look at the different sizes of the conveen product.
But after the op his penis has gone really small and he is worries that the conveen will fall off and then leak everywhere, especially at night when he is moving around.

I have ordered the sample from Coloplast to see if these are better.
We did mention the conveen to the consultants and they did say that he would become lazy and rely on them to much which would hinder recovery. What are your thoughts?

He has been to the incontinence clinic a few times and they have given him some pads and checked he is doing the exercises ok.
But he is finding the has to change the pads very regular more than 3 times a day as once they a full they get very heavy and start falling down.

I shall wait for the Coloplast to see how he gets on.

Is there anything else he should be doing to help recovery?

Thanks for all your help.

User
Posted 17 Feb 2016 at 14:23
Hi Mistry

I can only give you my own experience of using Conveen which was that it did not make me lazy or dependent. It allowed me to carry on with PFE's at willand 5 months post op I am almost back to normal.Everyone will have an opinion but for me it was the psychological as well as the physical benefit that gave me my life back.

At least if Dad tries it he can make his own decision.

Well done you for the support you are giving him

Kevan

User
Posted 17 Feb 2016 at 15:30

Thank you Kevan - i will wait for the samples and order them right away. Did you have any troubles with the Conveen like it coming off or anything.

Also how often did you wear it?

User
Posted 17 Feb 2016 at 15:39

Mistry,

If you have ordered the free sample pack from Coloplast it contains a selection of the different sizes of sheath available, also a cardboard profile gauge so that you can select the appropriate size that suits...

Luther

User
Posted 17 Feb 2016 at 16:52
Hi Mistry

I had no problems with it coming off, Dad just needs to ensure that it is a good fit and that he squeezes it firmly where the adhesive is. I use the bag on my calf and the tubing is long enoughtfor me to adjust it to the length Iwanted by cutting it.

I used it if I was going to be out for mostof the day or doing a lot of walking.

Although almost totally dry now I used it yesterday as I have a bit of a cold and occasionally if I have a coughing or sneezing fit it could be a bit embarrassing and I was out walking all afternoon. It was a lovely afternoon and I felt very comfortable. When I was using pads all the time I was using Boots high volume ones in the day and their all in one pants at night for security. I have no experience of using the Conveen at night.

I hope this helps but would stress that I am no expert in these matters I can only pass on my own experience.

Kevan

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

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

 

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

 
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