Dealing with incontinence

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.

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

Malcolm

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.

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?

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.

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?

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

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...

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.

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

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. 

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

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

Is this any use?

Alternatives to a sheath