Incontinence 8 week post op

User

Posted 27 Oct 2015 at 13:32

Yes, tried those too in the early days. They gave me the ability and confidence to return to work after the prostate removal.

Tony

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

User

Posted 24 Nov 2015 at 18:02

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

User

Posted 24 Nov 2015 at 18:59

Hi Johny

Sorry to hear about your incontinence issues.

It was just over 1 year before I felt I could do without a pad. Dispensing with a pad at first was quite a leap of faith. However, I still wore a pad if I was wearing a suit or best trousers, but just to be safe.

I am now almost 3 years post op and reckon I am about 95% continent, maybe be a little better. I still wear a thin liner only if I wear a suit and other times I manage without. I still have odd leaks now and then but I live with it. My flow is otherwise very good and I am reluctant to do anything to jeopardise this. I would much prefer a leak rather than retention - that is one of my worst nightmares.

I only wear a liner with a suit because a suit is more hassle taking to dry cleaners but trousers can easily be washed.

I am quite paranoid about smelling of urine so I keep myself well showered.

Looking back I thought the day would never arrive that I would be dry but it did very gradually. I think it varies from man to man - some are dry quickly and some take longer.

I do have a suggestion when you feel the time is right - wear your oldest trousers, dispense with a pad and on a day you don't have anywhere special to go and see how you get on. Sometimes it is just a matter of confidence but if you do slip up old trousers won't matter and you will be at home to wash etc..

Having been where you are now I know exactly how you are feeling. However, don't give up! It will get better.

Edited to correct grammar!

Wishing you all the best.

Edited by member 26 Nov 2015 at 21:38 | Reason: Not specified

User

Posted 24 Nov 2015 at 20:00

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!

Tony

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

User

Posted 24 Nov 2015 at 20:36

Hi Johny,

six months is still really, and as Tony says there is no magic arbitrary date by which time you will be dry, sadly. As is said many time here all men have the stem disc bits in the same general area and at op there are disturbed in broadly speaking the same fashion with the result that no two men ever seem to have the same recovery rate. It is cruel but true.

If it helps put your mind at ease, my dry enough and confident to abandon pads at all was at about 9 months I believe, it was a while ago. Prior to this my attitude to the whole issue was individual and non-conformist apparently. PFEs did nothing for me, except tire me out so I stopped doing them pretty soon. Now I do not know had I continued doing them or restarted them that they may suddenly have dried me yup a lot quicker, but I stopped. In an evening after a day with 1 or 2 or 3 or even 4 pads as it was early on I would abandon pads in the evening and bag up. By "bag up" I mean put a Conveen sheath on and wear my leg bag or night bag. Then I would abandon trying to stay dry and just relax with beer or whatever. It meant that for the evening I could relax and not worry about that particular issue.

I kept a blog of my life during those months, not even sure of it still available here, or even if it was under this username? If you want a read I will send you a copy.

Not sure how much you are leaking or when, are you dry at night? Is it stress leakage during the day when exerting, or when physically tired or run down?

Getting your head and mindset around to accepting that for the time being this is your life, your new norm, will help reduce the anxiety. And may help the healing process. Sadly, some men never get "better" in that department.

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 25 Nov 2015 at 16:07

Hi Johny,so sorry to hear of your continued continence problems,its only when i read stories like yours that stops me feeling sorry for myself after 5 weeks post op.I truly believe there is no finite time to regaining full control as everyone is different in age,or body makeup& recovery capacity i feel also its down to how successfull the attatchment to the bladder neck is.I had my first blood test today since my operation&go to see the surgeon next Thursday for results.Ive already self referred myself to an incontinence clinic&await a reply for an appointment.Thats all before we get to the ED stuff.Try to stay posetive,hope thats not too much of a cliche,although it may seem theres very little light in the tunnel yet,&please keep me up to date on your progress.

Best Wishes

Polarbear2.

User

Posted 26 Nov 2015 at 15:07

Tony/ CB

If I understand it correctly the sheath is a once only use item,but Can the conveen bag be quickly disconnected to urinate normally and are they standard fit bag connection.

My recent ops have left me a bit in limbo sometimes have good days sometimes just leak. Early days I know as my bladder has been idle for 90/days.

Thanks Chris

User

Posted 26 Nov 2015 at 15:59

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!

Tony

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

User

Posted 26 Nov 2015 at 17:42

Tony

Thanks for the info,after having a leg bag for about sixteen weeks in the last 18 months I have found a few ways to keep it in place. I want to keep passing urine as normal as possible but sometimes leaking 4 or 5 times an hour into pad is not fun.

Good luck for the activation on the 2nd.

Thanks Chris

User

Posted 26 Nov 2015 at 18:33

Hi Johnny

OH is just coming up to his 12 month anniversary (dec1st). He is not continent, but how much of a problem this is depends on what he does in the day.

He has a physical job (farming) and if he does too much he leaks more. He's on two pads a day, one of which is relatively dry. Some days if he doesn't do much he manages with one.

I think he's become resigned to it

User

Posted 26 Nov 2015 at 19:22

Louise,

That sounds like stress leakage, as in, if he exerts, he leaks. 19 months on I still have stress leaks. The only way I have found to successfully control these is to exert muscle control before I stress. Every now an d then I forget to exert control, and I leak. Not a lot, maybe 1/4 a teaspoonful or less. Sometimes it gets beyond the first sphincter, and stays contained, and if I get to a loo or find a patch of grass I can go.

The technique is to exert sphincter muscle control before he stresses.

It can take a while to get used to get this going, but it can work, it did for me. But, even now, 2 years 7 months down the line, post Da Vinci in May 2013, I still get the odd "s*** f*** bollox damp gusset" stress leak if I forget to tense before exerting. But I am happy with that, as oppose to being dead from PCa.

HTH

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 27 Nov 2015 at 08:14

That's interesting Dave. I'll pass it on. I think the problem is that he is unable to do this. I asked him once if it was controllable, and he said no, although that was 6 months ago and it has improved since then.

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

User

Posted 27 Nov 2015 at 08:15

And bedding cows is spreading straw in case you were wondering!!!!

User

Posted 27 Nov 2015 at 08:37

Originally Posted by: Online Community Member

And bedding cows is spreading straw in case you were wondering!!!!

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

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 27 Nov 2015 at 09:44

Oooh, Dave, I think you are running the risk of a lecture about farming being a 365-day per year job, the expense of employing extra help, the price paid by supermarkets for the milk, farm subsidies and EU competition rules..... Louise, please let him down gently!!

And Dave, while on the subject of treadmills, try the following for some light relief...

Treadmill Danger!

Tony

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

User

Posted 27 Nov 2015 at 16:58

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

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 27 Nov 2015 at 17:10

Originally Posted by: Online Community Member

Worth a try maybe?

atb

dave

Dave...... I too have found that by wearing tight 'speedo' type swimming trunks my leakage reduces..... As you say the additional support around the nether regions seems to help...

Luther

User

Posted 27 Nov 2015 at 18:48

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

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 27 Nov 2015 at 19:15

Thanx for that Dave. Too much info haha. For what it's worth I now wear briefs as well instead of trunks which I prefer.

User

Posted 28 Nov 2015 at 19:52

Ha ha thanks guys.

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...?

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