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Incontinent to Dry.....

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User
Posted 21 Dec 2016 at 17:04
Hi All.....I was wondering how the journey from being incontinet to dry pans out after RP....Is it a gradual slow improvement each day, perhaps barely noticeable or is there a time when suddenly everything is more or less ok?......also I assume that there are several considerations on the road back to normality and the PFEs are only one part of the story?.....trying not to get disheartened, I know it is very early at only 4 weeks since catheter removal but some days I feel really down and think...is this it?........Paul.....
User
Posted 23 Dec 2016 at 00:11

P

My incontinence journey is different to most people on here. In May 2014, four days post catheter removal I was almost dry, I still wore pads for a few weeks and did have the odd accident. One Saturday morning I got up and went shopping,  while shopping I noticed I had not put a pad on that morning, at that point I realised I was 100 per cent continent. For quite a while I would still put a pad on if going on a long journey and I was not driving. 

Sixteen months post Da Vinci a simple dilatation went wrong and after 90 days of catheterisation I was left incontinent, I still did my PFEs and even got an app on my phone to help do them. Various things helped, the coloplast sheath system was a life changer, giving me the confidence to hold on a bit longer knowing if I could not hold the urine it would finish up in a bag and not down my leg. Your urology team may not prescribe the sheath system this early as the believe it makes you lazy, I did use a bit of blackmail to get the sheath system.

I was also told to put the incontinence to the back of my mind and belive I was continent. I have regained my continence several times following further ureteral procedures. I mid January this year I stopped doing PFEs but stiil regained my continence and I am not suggesting you stop them. My last ureteral procedure in October 2016 involved cutting into the scar tissue which has compromised my continence and I now switch from incontinence to retention and have some very varying flow rates. I put a few sheets of loo roll in a nappy liner and put that between my penis and the pad, if I get a small leak I change the liner and loo roll and still have a clean dry pad.

The process of urinating is something we take for granted, if your have some time to spare follow the link to a you tube video  https://www.youtube.com/watch?v=JwaeWXhklio  you will see how complex the process is.

I noticed from one of your other posts you had a stent fitted, what was the purpose of that ?

It is still early days but I do know how depressing and debilitating incontinence can be.

Thanks chris

 

User
Posted 21 Dec 2016 at 17:26

Hello Paul.

Only four weeks so it really is early days for you yet. Yes, some men may well report being dry almost immediately but I'm sure for a lot of men time has to be allowed for healing.

Your body has been through massive trauma and will take a time to recover.

I'm sure that the men who have already experienced what you're going through will be along to reassure you.

We can't control the winds - but we can adjust our sails
User
Posted 21 Dec 2016 at 17:50

There are a number if things going on in your body. The new join in your urethra has to settle and if the valve was repositioned then your brain has to re-learn how to control it ... similar to when you were being potty trained as a toddler. You are using something like 2000 calories a day healing, which makes you tired and that in turn makes it harder to concentrate on bladder control. And then finally there is the damage done by slicing through your pelvic muscles which is where the PFEs come in. Allow 6 months and be pleased if it is quicker

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

User
Posted 24 Dec 2016 at 12:07

I'm now 8mths down the line and still leaking , frustratingly ,but manage dry pads some days and I've had ' no pad ' days when I've been messing about round home . The local incontinence clinic have been great and have given me a variety of PFEs so I wont get bored doing them.Walking downhill produces leaks but on the whole I cope . Go to the gym with a pad but play footy without one .Coughing and sneezing with a cold doesn't help but overall I think sod it , just get on with life .It is [sorry ] inconvenient , and I feel p....d off at times , but what's done is done and the alternative dont thrill me too much .Hopefully you and I will both get there , but as others have said , we're all different and if we need to be patient about it , so be it . Dont let it get in the way of living your life .
Merry Xmas to all and a Happy and Healthy New Year .

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User
Posted 21 Dec 2016 at 17:26

Hello Paul.

Only four weeks so it really is early days for you yet. Yes, some men may well report being dry almost immediately but I'm sure for a lot of men time has to be allowed for healing.

Your body has been through massive trauma and will take a time to recover.

I'm sure that the men who have already experienced what you're going through will be along to reassure you.

We can't control the winds - but we can adjust our sails
User
Posted 21 Dec 2016 at 17:50

There are a number if things going on in your body. The new join in your urethra has to settle and if the valve was repositioned then your brain has to re-learn how to control it ... similar to when you were being potty trained as a toddler. You are using something like 2000 calories a day healing, which makes you tired and that in turn makes it harder to concentrate on bladder control. And then finally there is the damage done by slicing through your pelvic muscles which is where the PFEs come in. Allow 6 months and be pleased if it is quicker

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

User
Posted 21 Dec 2016 at 18:57
Hi Paul

In my case I had read and been told that it could take up to 12 months to regain control so took the view that it would take as long as it would take and so would not get hung about it. I did my PFE's but took my time moving so that I could control things a bit at a time. At first just trying to stand up was problematic but by doing it in stages helped. I then found that there would be times when I made quicker progress. I experimented with different pads as in my case I found that the pads were the things that were causing pressure and making me want to go more frequently. As time was passing I started using Coloplast sheaths and a bag which was more comfortable when walking and driving and things started improving more quickly because I was comfortable and more relaxed. It took about 5 months to ŕeally feel back to normal but having said that I use Tena Man Protective Shields if I am going out as I will leak if I cough or sneeze but that could well be an age thing. These little pads are brilliant as you can't feel them.

I'm sure you will get there but nobody can tell you when. Don't let it rule you. It isn't easy but you have to use whatever is available to get on with life and I think that this helps with recovery as you become more focused on the positives than the negatives.

All the best with your recovery and have a peaceful Christmas.

Kind regards

Kevan

User
Posted 23 Dec 2016 at 00:11

P

My incontinence journey is different to most people on here. In May 2014, four days post catheter removal I was almost dry, I still wore pads for a few weeks and did have the odd accident. One Saturday morning I got up and went shopping,  while shopping I noticed I had not put a pad on that morning, at that point I realised I was 100 per cent continent. For quite a while I would still put a pad on if going on a long journey and I was not driving. 

Sixteen months post Da Vinci a simple dilatation went wrong and after 90 days of catheterisation I was left incontinent, I still did my PFEs and even got an app on my phone to help do them. Various things helped, the coloplast sheath system was a life changer, giving me the confidence to hold on a bit longer knowing if I could not hold the urine it would finish up in a bag and not down my leg. Your urology team may not prescribe the sheath system this early as the believe it makes you lazy, I did use a bit of blackmail to get the sheath system.

I was also told to put the incontinence to the back of my mind and belive I was continent. I have regained my continence several times following further ureteral procedures. I mid January this year I stopped doing PFEs but stiil regained my continence and I am not suggesting you stop them. My last ureteral procedure in October 2016 involved cutting into the scar tissue which has compromised my continence and I now switch from incontinence to retention and have some very varying flow rates. I put a few sheets of loo roll in a nappy liner and put that between my penis and the pad, if I get a small leak I change the liner and loo roll and still have a clean dry pad.

The process of urinating is something we take for granted, if your have some time to spare follow the link to a you tube video  https://www.youtube.com/watch?v=JwaeWXhklio  you will see how complex the process is.

I noticed from one of your other posts you had a stent fitted, what was the purpose of that ?

It is still early days but I do know how depressing and debilitating incontinence can be.

Thanks chris

 

User
Posted 23 Dec 2016 at 12:01

Thanks Chris, sounds like you are having quite a journey.......I suppose my impatience to be normal doesn't help......I do think that the experience of actually being incontinent is quite a different matter to talking about it pre-op and the reality is much harder to come to terms with.
The stent was fitted so the surgeon had a clear view of where the ureter was during the procedure....not for any medical issues etc.....it's coming out on Jan 9th......
Today is going quite well for some reason and I've not flooded yet and made it to the bathroom with time to spare.....
Paul......

User
Posted 24 Dec 2016 at 12:07

I'm now 8mths down the line and still leaking , frustratingly ,but manage dry pads some days and I've had ' no pad ' days when I've been messing about round home . The local incontinence clinic have been great and have given me a variety of PFEs so I wont get bored doing them.Walking downhill produces leaks but on the whole I cope . Go to the gym with a pad but play footy without one .Coughing and sneezing with a cold doesn't help but overall I think sod it , just get on with life .It is [sorry ] inconvenient , and I feel p....d off at times , but what's done is done and the alternative dont thrill me too much .Hopefully you and I will both get there , but as others have said , we're all different and if we need to be patient about it , so be it . Dont let it get in the way of living your life .
Merry Xmas to all and a Happy and Healthy New Year .

User
Posted 10 Jan 2017 at 18:19
Hi Paul,

I'm now almost 4 weeks post operation and almost 2 weeks post catheter.

I'm dry overnight and not bad in the morning but start leaking after about a mile walking and when moving around midday. Using 2-3 medium pads a day.

I came on here to find answers to the same questions you asked.

I read a surgeon's article that said you start dry at night, then dry until lunch, then dry later and later. I'm hoping that's the case and if it takes 6 months I'd think that's good.

Regards

Peter

User
Posted 10 Jan 2017 at 21:38
Hi paul i was in the exact frame of mind after surgery felt realy down and needed someone to ask the same questions to . Im 2 years post op and still have slight leakage but can put up with it .It got better gradualy and was a marked improvment after 6months i was pad free at 12 months .things will get better believe me just give it time x
 
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