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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

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

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

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

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

 
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