Incontinence 8 week post op

Hi again Johny
Many on here will know far better than I , as I'm only 5 wks post-op. I think it's very normal to have a sizeable level of incontinence at this time. If you read through many posts , men are still incontinent at 7 months. You are surely getting full follow up with ED and incontinence ?
I was told to do the PFE's forever now if I want to stay continent. I was told to do them with the catheter in religiously , and I'm virtually dry at 5 wks. Many men on here were told NOT to do them with it in , so there is some debate here.
Anyway mate soldier on with them and read the booklet on this site on how to do them properly if you haven't already
Chris

No leaks when lay down.

Managed to get into the incontinance clinic this week for some advice, even at week 10 the swelling from the surgery can cause issues with leakage so iv been told, I'm just going to keep on with the excercise and hopefully it will come right.

Johny

* well slight apologies but it needs saying and I mean it to help you.

Jonny, Be a patient patient, try not to let impatience get the better of you.  It does no good. 

Some men are dry as soon as the catheter is removed, others take longer.  Maybe age is a factor?  The issue of the urethra and it having to reacclimatise to a new "shut" was explained to me by a very good lady friend of mine some while ago.  For years since as a kiddy you were dry the urethar clamped down on itself and shut off the valve and you ere in control.  Then, a tube is shoved up it and your urethra can no longer get to clamp down on itself, but adjusts to a new down as far as it can, on the tube, and thinks that is sufficient.  Then the tube is removed and the bladder has to learn a new shut position, where it used to be, and that can take time, took me over 7 months.  Takes others a lot less, some a lot more, some never recover control.  

PFE - are you doing them correctly?  I was doing them correctly apparently, did me no ydoolb good at all.  All they did was wear me out and I was always knackered.  So I stopped doing them.  Still made it to dry around 7 months post op, well the odd squirtle, but I am happy enough as I am now 2 years 4 months down the line, dry with the odd surprise squirtle if I catch my head on a bar at the gym or trip up, or aroised and upright but it's less than a teaspoon and my wife understands and is fine and does  not make a fuss, but carries on.  Making the supper or doing the painting.  

Your recovery will be unique to you, and how you manage it may depend on how far you are prepared to think outside of the medical professional advice box?

PFEs - did not work for me so I stopped doing them.  Outside of the box, but I was not so tired, and miserable, and I still recovered.  

Trying to keep dry during the day, felt like almost doing a permanent sit up, gave up on that in the evenings and would put a conveen on with a leg bag.  This meant in the evening I could, relax, and pee at will. Have you considered that option?  You may be beyond that need by now?

Do you know the anatomy of your surgery, where the urethra meet your bladder, how the cuts were done, what shape?  How the muscle could be affected?

Night time, dryness is mostly likely due to gravity, or lack of gravity carting on your bladder.  Is it dry when you are on your prone on your front?

The likelihood is that in time you will get dry and regain control, you need to wait for that time. 

atb

dave

Hi Johny,

Has there been ANY improvement in your leakage rate, do you know or think?

Have you been measuring how much goes into each pad over a fixed period of time to see if there is less day by day or hour by hour?

Are you dry at night?

FWIW the exercises do not work for everyone, did not work for me, my body recovered control at it's own rate, it did take me longer than average though, and is disheartening.

If you are not measuring the leak rate then consider doing so, there may be gradual improvements that because they are gradual are creeping up on you without you knowing?

Can your GP advise or offer more support?

Don't lose hope, there is still time to inprove.

atb

dave

 There isnt a one size fits all, everyones recovery time is different, I remember feeling fustrated when I was 3-6-9-12 months post PR

I'm now 18 months on and still leaking but not as 6 months ago,  there 's been a big improvement, the pelvic exercises have never worked for me but they tell me I'm a bog standard recovery case....hope there right !

Also, I haven't seen them mentioned on here recently but some men on the forum have found conveen sheaths to be really useful.

Hi All,

Just a quick update about my new best friend incontinence!!

Coming up to six months now and as much as i enjoy having a companion i think its time we went our separate ways.............but its just not getting the message!!!!!!!!!!!!

Still on 3 pads a day, dry at night, but i do feel like we have hit a brick wall. 

I know we all have our own individual experiences with this issue but at six months surely my body has recovered enough to get its act together, anyone else gone over six months before the incontinence relationship ends?

If so is it the pads just get dryer or do you get a feeling things are on the up. (id love something to be getting up, but i will stick to the subject in hand........or may be not)

Johny

Hi Johnny

I don't think that imposing arbitrary limits like six months is wise because there seem to be numerous factors that influence the rate of continence recovery, almost varying man by man.

The nerd in me made me weigh pads before disposing of them, then plotting daily volumes (= weight near enough - remember school physics) and applying a correction for the relative level of activity during the day. Stuff it all on a spreadsheet and, if nothing else, it will impress the hell out of your urologist... Take it to a real extreme by weeing into an old measuring jug and timing yourself doing that. (I seem to remember that a study - probably PHD - showed that all mammals, irrespective of size, took about 20 seconds to empty a full bladder. I mention this purely for interest.)

Before getting really fed-up with that palaver, the graphs showed that I was not improving, hence the current treatment regime where, after Wednesday next week, I am hoping to see a step change to something close to absolutely dry...

There again, if you try not to think about incontinence too much, you may suddenly realise that your situation has improved without having to measure, i.e. purely on a subjective basis. I hope this will apply to you!

Yes, sheath is once only, but is a push fit onto the tube leading to the bag. I used to use one sheath per day (I was dry enough at night not to have to use one then), and used to change the bag every week or so (or when it started to be discoloured).

The alternative to disconnecting to urinate normally is just to put one foot on the edge of a toilet, open the drain cock on the bag, and then go. Disconnecting can disturb the adhesion of the sheath causing it to fall off, usually at the most inopportune time.

The trickiest bit I found was stopping the bag from sliding down my leg, so I had to keep the upper strap above my (fortunately) knobbly knee.

When it comes to incontinence, I have found that it is the mental issues that are worst, finding the best solution to manage it is merely a mechanical procedure. Persuading myself that I was OK with my second pair of wet trousers in a day was more difficult.

Hope this helps!

The other problem of course is that it's a continued physical exertion. If he's bedding cows, it takes a good half hour

Aah, that activity is difficult to exert against, he can hardly exert for 30 minutes non stop.  I have the problem with leakage if I am doing digging, mixing concrete laying a screed, so I stopped doing those things.  Appreciate that he can not just stop bedding cows.  However I can exert control for 2 minutes plus when I am running on the treadmill now, could not do that before without considerable leaking into a pad.  Don't need a pad any more, even for the treadmill. 

I am no expert but, he may continue to improve, just more slowly than if he could stop such activity for a few months?

atb

dave

Farmers working 365, why? Crops grow for what a month, get "harvested", a posh name for dug up, and are then sold. And they have all those huge toys, I mean "agricultural machines".

STOP Louise, put the shotgun down! I am jesting. I knew a couple of farmers and they do work extremely hard and in harvesting season, if the weather is right, it can be 24/7 to get a crop in before the weather turns.

Tony http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif - Re Ms Vorderperson, she should have worn a sports bra, I wonder what she tripped over, a pair of low hanging consonants perhaps?

On a more serious note Louise, if things are getting better, that is a good sign, and I wonder if it might be made better still by wearing tighter pants? I am not jesting with this idea. When I was leaking quite badly when running, and had to wear a pad on the treadmill I used to wear swimming trunks, bright red Budgie smugglers. These were tighter than pants or briefs, and apart from keeping the pad securely in place, they also provide a bit of snuggliness and helped slow down leakage due to pressure on the groin area generally.

Worth a try maybe?

atb

dave

Good for you Luther.

An endorsement Louise, it might help?

Should add, I do wear sports shorts over the "smugglers" in the gym. ;-)

have a good weekend all.

dave

If only farming was his only job... We also have an events company, which involves marquees and a lot if heavy lifting. He spent the first nine months post op not doing the physical stuff, then his right hand man left for a new career. We raise beef cattle not dairy, so no milking. But we do show them, so halter training is the order of the day. This cN take some doing! And he will lug bales, corn etc.

Normally, November through to march is relatively quiet events wise. This year we are busy til Xmas, with a month to rest in January. We shall see how it goes. He goes back to see the continence nurse next week, 12 months to the day since surgery Pre op, we were given the 12 month barrier as the outside limit to regain continence, and I have asked him if he is going to look at surgery. He says not. I think he believes it is getting better, just very slowly.

As for pants, he wears the tight trunk type of boxer shorts. The harvest festival kind (all is safely gathered in). Are you saying tight briefs are better?

Maybe just a smaller size...?

I think oh has probably given up on pfe as well. They've done him no good. He had his pelvic floor strength measured in August. Nurse said it was very good.

He can certainly relate to the plenty of beer, although he tends to stick with wine more often now. Four pints is where he starts to lose control.

I think you are very brave to give up wearing pads when not fully continent. I'm not sure he would do this. He won't even change down to level one.

Maybe I'll find him some nice frilly pants for Christmas. Or maybe not!!

However, he has cut down on his coffee and tea intake.

And ditto with the beer. He sticks to wine too most of the time.