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recovery rates from incontinence

User
Posted 09 December 2015 16:41:31(UTC)

I had my prostate removed four weeks ago as it was riddled with cancer.

A fortnight later the catheter came out... and the shock of being incontinent followed.

The nurse said, or the literature says also, most men take 1-6 months to recover continence.

Is there anywhere that offers something more specific.

What does 'most'  men mean.....it could anything between 51% and 99%.... 'most' is way too vague.

Then the 1-6 months statement.

Of the 'most men' do 20% come good month by month?

Are 50% OK at three months?

There must be somewhere I can look to see how I'm progressing against the cohort of world's leaking men?

Any guidance much appreciated.

Charly Gaul 58

 

 

User
Posted 09 December 2015 17:49:53(UTC)

Originally Posted by: Online Community Member

I had my prostate removed four weeks ago as it was riddled with cancer.

A fortnight later the catheter came out... and the shock of being incontinent followed. You should have had some warning that this might happen. 

The nurse said, or the literature says also, most men take 1-6 months to recover continence.  Some men are dry almost instantly, others take longer, a few never get dry.  "Dry" is apparently defined by the NHS as using up to 1 pad per day as I understand it.  

Is there anywhere that offers something more specific.  Not really as the are no specifics in this matter, each man seems to recover at his own rate, everything else may or may not happen at any given time.  Sorry but that is the truth of the matter.

What does 'most'  men mean.....it could anything between 51% and 99%.... 'most' is way too vague.  As above, every individual is individual in how fast and how well their body recovers.  

Then the 1-6 months statement.

Of the 'most men' do 20% come good month by month?  You may make significant progress one month then none for a while and then without realising it make progress again.  All individual to each man. 

Are 50% OK at three months?

There must be somewhere I can look to see how I'm progressing against the cohort of world's leaking men?  Some will be making faster progress than you others slower progress.  All you can do is to either do the PFEs, if they work for you, or if they appear to make your leakage worse, don't do them. 

Any guidance much appreciated.

Charly Gaul 58

Charly Gaul 58 my replies are in italics above.  

PCa must be the worst disease for an engineer to get as there are no hard and fast rules or specific answers to questions such as yours, and that we have all had when we started out.  

When your prostate is removed the urethra is cut away from the bladder near the site where the muscles that control urine flow are situated, poor design by God when she designed men in my view.  The urethra is then sewn back on to the bladder.  The inserting of the catheter requires your bladder muscles to adjust to a new "closed" position, closed on to the catheter tube, so not really closed.  The catheter is removed and then muscles revert to their closed position, but without the catheter you may leak?  Some men's bits adjust straight away and they are dry straight away, lucky stabrads.  Some men have a dart put into their bladder to have the urethra sewn in and this may affect control.  

Some folks suggest PFEs to help regain bladder control, have you tried this?  Other's suggest, as well or instead, Kegel exercises. 

Are you making any progress?  Do you have any mechanical aids to assist you come to terms and manage your condition?

Good news that your cancer riddled prostate was hacked out.  

Best guidance may be that you do not hope for any progress but accept that whatever progress you make you will be better off than some. 

atb

dave

Edited as I see that quoting you, made your post also appear in italics, LOL.

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 09 December 2015 18:27:36(UTC)

Just to say welcome Charly Gaul

Dave has given good advice and his views.

I hope things improve for you.

We can't control the winds - but we can adjust our sails
User
Posted 09 December 2015 18:55:22(UTC)

Many thanks. I'm age 70 and other than last year I've been a racing cyclist.
So already miffed to miss a season through issues connected to a degeneration of the lower spine. My osteopath finally got 'pandora back in the box'.
Now I find myself sitting things out for a second time round.
Razzm.
I'm wondering about building two crutches to fit under my armpits and riding a static bike (bike fitted to turbo-trainer) under the back porch if things are likely to be weeks or months... though a soggy beam end won't be fun.
Thanks for the comments though.... especially the details on what went on while I was out cold.

User
Posted 09 December 2015 20:30:37(UTC)

Charly it is really important that you don't try cycling until you have spoken to your surgeon. My husband was advised to stay off the bike for 7 months after his op as the surgeon believed it might damage his chances of making a full recovery. It drove him crazy but as he is neither incontinent or impotent, half a year wasn't so bad in the grand scheme of things. If you are very keen to cycle, consider buying a prostate friendly saddle from one of the proper cycle accessory shops.

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


User
Posted 20 December 2015 19:30:43(UTC)
Hello charly

12 months ago, my oh had his prostate removed. I asked all the same questions you asked, I really did, as I'm sure you'll be able to see from my history on here!
My oh was devastated when he needed pads, even immediately post op. I think he thought the incontinence wouldn't happen to him.

Twelve months on, he's still on one pad a day.

No matter how much information you ask for, and how much you compare yourself to others, it will make no difference to your continence levels.

There is no normal, only normal for you. It may take you a week, a month, a year or longer. My oh and I wasted a lot of time worrying about where he should be on the road to continence.

His is improving. It goes in stages. Sometimes there's no improvement for weeks, then suddenly it gets better. He has a physical job, so this hasn't helped. He hasn't been as religious about doing pfes as he should have been. He didn't do as the nurses told him with regard to shifting heavy weights. He still drinks caffeinated coffee.

I can tell you about his experience, but it won't be the same as yours. Nor will anyone else's. Comparison is not helpful, and can cause unnecessary distress.

Difficult as it is, please try and accept that it will happen when it does.

Louise
User
Posted 21 December 2015 18:42:16(UTC)

Hi Charly,

You can cycle again, if you want to, on the road, with your mates, okay, with a difference. Have you considered a recumbent cycle set-up?

As I understand it, the recumbent seating position is a more efficient means of transferring energy to the pedals than the usual "sit on a saddle" style. This could mean that you would be faster than you were, and faster than them?

If I can think if any other ways you can cycle without putting pressure or strain on the prostate area, I will post again.

atb

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 21 December 2015 19:37:36(UTC)

You don't think it is worth checking with the surgeon then CB?

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


User
Posted 21 December 2015 20:56:28(UTC)

Recumbent cycling is like sitting on a chair. With pedalling.

Different strains. Different pressures.

But you are right, as always, no issue with that, and I defer, he should check JIC (Just in case).

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 21 December 2015 22:59:26(UTC)

Ha, like the sitting back position of a go-cart? How do they balance?

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


User
Posted 21 December 2015 23:14:08(UTC)

Made easier with the wheels x 3!

Still worth checking the pressure points on the prostate area.

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 21 December 2015 23:46:35(UTC)

Oh, we used to call that a tricycle ... or stabilisers 😂

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


 
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