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First day post catheter incontinence

User
Posted 27 Sep 2018 at 23:25

Dad had a RALP 2 weeks ago and had  his catheter out today. He is totally incontinent! No control what so ever,  doesn't seem to be able to hold any urine in his bladder at all!

Please tell me this will get better, we were expecting some incontinence but this is ridiculous. Even the big nappies aren't working...

User
Posted 10 Oct 2018 at 21:39

My catheter came out a week ago today. It was a terrible shock at first but I'm gradually learning to be practical about it.

I wear a new pair of incontinence pants every day putting them on after my daily shower. I put a large pad inside them and change it about 6 times in 24 hours. I seem not to leak in bed or when sitting but as soon as I start to move around I leak.

I do my Kegel exercises 3 times a day and have started walking about a mile a day. The following video is very helpful in understanding what is going on with the healing process. 

https://youtu.be/7CSP6Sicm8Q

Edited by member 16 Nov 2018 at 14:37  | Reason: typos. Moral don't post using phone.

User
Posted 09 Nov 2018 at 18:58

Hi, I had the OP on 29th Sept 2016, I had the catheter in for 3 weeks when it was removed I had the same problems, I leaked and leaked, it really got me down, I said to my wife I can't carry on like it, then a guy on here replied to my post, he said that the first 4 weeks are the worst, he was right things gradually improved, I still wear the smallest pad for security, the men that say they are continent straight away are very very lucky, if you have an Android phone download the free app prostate aerobics it is very good, it is a major op and things do take a long time, best wishes

User
Posted 28 Sep 2018 at 21:57

Hi,  I wonder what the hospital said after having the catheter removed.  It is early to decide.  Is it better when he's lying down.   I found that at night it was never a problem but there was a small emission with every step in the day.  That lasted a few weeks but gradually got better.

Some people need intervention, there are devices and further treatments to fix it.  I'm not qualified to say but having the catheter out should allow it to heal and recover better as stitching the sphincter back onto the bladder appears a delicate process.    Regards Peter

User
Posted 10 Feb 2019 at 21:49
Caffeine irritates the bladder and alcohol is a relaxant.

If you have only just had the op, neither is going to be the main cause of your incontinence ... your brain will need to relearn how to control the urinary sphincter in similar way to when a toddler is being potty trained.

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

User
Posted 11 Oct 2018 at 13:48

Where your dad is now is normal.

I thought that I was doing pelvis floor exercises back then but looking back I had a long way to go. I have a timer to set to remind me three times a day but do more in between whenever I think of it.

I was 3 x Tena No3 at the start but three months on just need one light pad a day to catch drips.

Tell him to stick at it and not despair, the chances are very good that all will be well in the end.

best wishes,

stu k

User
Posted 11 Oct 2018 at 15:25

Originally Posted by: Online Community Member

Where your dad is now is normal.

Hi Stu, in my very limited experience, (one case), perpetual incontinence immediately after surgery is not ‘normal’. Of course, any outcome depends on the skill of the surgeon, the state and staging of the tumour, how much was removed, the age of the patient and his general health prior to surgery.

All I can say is in my case, as oft repeated here, I bought a pack of 14 Tena light pads for the day my supra-pubic catheter  was removed, and I have four left. A shame really, as if I had stuffed them down my knickers, I might not have suffered the three nocturnal accidents which occurred a week or two later! I now sleep on a map of Tasmania....

I am continent now, save the occasional dribble, which I may have had before....but maybe then it was not out of the end of my penis.....

Dad and daughter should contact the MacMillan/Prostate Nurse at the hospital where the surgery took place, and hopefully  they will be able to offer some help and advice.

Best of luck and kind regards, John.

User
Posted 11 Feb 2019 at 13:44
In a normal person, the two work together, one involuntary and one conscious / sub-conscious. In RP the internal sphincter is almost always removed but the external sphincter can cope alone as long as it hasn't been damaged. The external sphincter relies on muscle memory so the brain (via the nerves) often has to re-learn how to control it.

In some cases, the urethral valve has to be re-positioned - so John had bladder neck reconstruction during the RP and the chance of external sphincter recovering was supported by the re-placement of the valve.

Once you don't have a prostate anymore, the external sphincter is at the top of the urethra.

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

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User
Posted 28 Sep 2018 at 08:42

There is always a risk of permanent incontinence that may need further intervention but 2 weeks is to early to be worrying about that!

Is he doing his kegel exercise and avoiding caffeine drinks and alchahol??

Edited by member 28 Sep 2018 at 08:43  | Reason: Not specified

User
Posted 28 Sep 2018 at 10:06

Thank you.  Yes he's trying to do his PFEs but says he can't really feel much happening. 

Avoiding caffeine and alcohol, yes. 

User
Posted 28 Sep 2018 at 21:57

Hi,  I wonder what the hospital said after having the catheter removed.  It is early to decide.  Is it better when he's lying down.   I found that at night it was never a problem but there was a small emission with every step in the day.  That lasted a few weeks but gradually got better.

Some people need intervention, there are devices and further treatments to fix it.  I'm not qualified to say but having the catheter out should allow it to heal and recover better as stitching the sphincter back onto the bladder appears a delicate process.    Regards Peter

User
Posted 28 Sep 2018 at 22:17

Thank you Peter. It is leaking with every slight movement at the moment. He isn't able to void at all on the toilet as there is nothing being held in his bladder. 

Hopefully it will gradually improve over the next few days and weeks. Think we will all celebrate his first toilet wee!

User
Posted 10 Oct 2018 at 21:39

My catheter came out a week ago today. It was a terrible shock at first but I'm gradually learning to be practical about it.

I wear a new pair of incontinence pants every day putting them on after my daily shower. I put a large pad inside them and change it about 6 times in 24 hours. I seem not to leak in bed or when sitting but as soon as I start to move around I leak.

I do my Kegel exercises 3 times a day and have started walking about a mile a day. The following video is very helpful in understanding what is going on with the healing process. 

https://youtu.be/7CSP6Sicm8Q

Edited by member 16 Nov 2018 at 14:37  | Reason: typos. Moral don't post using phone.

User
Posted 11 Oct 2018 at 13:48

Where your dad is now is normal.

I thought that I was doing pelvis floor exercises back then but looking back I had a long way to go. I have a timer to set to remind me three times a day but do more in between whenever I think of it.

I was 3 x Tena No3 at the start but three months on just need one light pad a day to catch drips.

Tell him to stick at it and not despair, the chances are very good that all will be well in the end.

best wishes,

stu k

User
Posted 11 Oct 2018 at 15:25

Originally Posted by: Online Community Member

Where your dad is now is normal.

Hi Stu, in my very limited experience, (one case), perpetual incontinence immediately after surgery is not ‘normal’. Of course, any outcome depends on the skill of the surgeon, the state and staging of the tumour, how much was removed, the age of the patient and his general health prior to surgery.

All I can say is in my case, as oft repeated here, I bought a pack of 14 Tena light pads for the day my supra-pubic catheter  was removed, and I have four left. A shame really, as if I had stuffed them down my knickers, I might not have suffered the three nocturnal accidents which occurred a week or two later! I now sleep on a map of Tasmania....

I am continent now, save the occasional dribble, which I may have had before....but maybe then it was not out of the end of my penis.....

Dad and daughter should contact the MacMillan/Prostate Nurse at the hospital where the surgery took place, and hopefully  they will be able to offer some help and advice.

Best of luck and kind regards, John.

User
Posted 12 Oct 2018 at 09:35

Hello John,

Ok - would 'not unusual' be a better phrase?  I only point out that my experience at the same stage as the original post described was the same and yet three months on, I am nigh on fully recovered.

regards,

stu k

 

User
Posted 12 Oct 2018 at 09:38

Hi John,

Dad is now 2 weeks on from removal and showing no real signs of improvement.  He's not dry overnight either...

Incontinence nurse appointment booked for 23rd of the month...

User
Posted 09 Nov 2018 at 18:58

Hi, I had the OP on 29th Sept 2016, I had the catheter in for 3 weeks when it was removed I had the same problems, I leaked and leaked, it really got me down, I said to my wife I can't carry on like it, then a guy on here replied to my post, he said that the first 4 weeks are the worst, he was right things gradually improved, I still wear the smallest pad for security, the men that say they are continent straight away are very very lucky, if you have an Android phone download the free app prostate aerobics it is very good, it is a major op and things do take a long time, best wishes

User
Posted 11 Nov 2018 at 16:46

Originally Posted by: Online Community Member

Hi, I had the OP on 29th Sept 2016, I had the catheter in for 3 weeks when it was removed I had the same problems, I leaked and leaked, it really got me down, I said to my wife I can't carry on like it, then a guy on here replied to my post, he said that the first 4 weeks are the worst, he was right things gradually improved, I still wear the smallest pad for security, the men that say they are continent straight away are very very lucky, if you have an Android phone download the free app prostate aerobics it is very good, it is a major op and things do take a long time, best wishes

Thanks so much for this information.

Husband has now had the catheter in for 6 weeks!  After 10 days they removed it but, as we found out later, he hadn’t healed and later that day he went to A & E in terrible pain. Apparently he is the 1/1000 that have bladder spasms and these put pressure on stitches etc. and so a second catheter had to be put in.

A cistogram showed still not fully healed 3 weeks ago. Fingers crossed that the cistogram tomorrow shows at long last everything has healed and it can be removed. 

He is so worried about incontinence. Was before the operation and is worse now! I feel better prepared.

Best wishes. 

User
Posted 19 Dec 2018 at 10:06

Thanks very much hillsrob for posting the link to the video, it is of great help.

Vindci

User
Posted 10 Feb 2019 at 21:34

Hi just had a prostate removal op and experiencing incontinence after removal of catheter. You said to avoid caffeine and alcohol, why is this so?

User
Posted 10 Feb 2019 at 21:49
Caffeine irritates the bladder and alcohol is a relaxant.

If you have only just had the op, neither is going to be the main cause of your incontinence ... your brain will need to relearn how to control the urinary sphincter in similar way to when a toddler is being potty trained.

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

User
Posted 11 Feb 2019 at 02:42

Hi Simmyt,

It's been about three and a half weeks since I had my catheter removed. My incontinence has improved quite a bit since then. The kegel exercises helped me a lot.

Here are some videos that were of help in understanding the right way to do them.

1) https://www.youtube.com/watch?v=7CSP6Sicm8Q

2) https://www.youtube.com/watch?v=QHwVglPQR_w

Foods: I tried to have all liquids including soups before 6:30 pm to avoid waking up at night to sleep comfortably. You may want to speak to your doctor if that is something that you can do. Coffee, tea, and even spicy foods then to irritate the bladder - at least in my case.

Diapers/Pads: I used the diaper for the first few days, but found them to be very hot. I use Depend pads, they are a good and effective alternative, but I think TENA have a better shape.

Hope this helps

 

User
Posted 11 Feb 2019 at 13:27

I get quite confused with info from medical experts, is the internal sphincter, the one between the prostate and bladder removed during RP or not. The lady in the video talks about nerves not communicating with the sphincter at the top of the urethra. Other articles state emphatically that the internal sphincter is removed with the prostate during RP. My understanding is that the lower / external sphincter is left intact ( although it can get traumatised) and we rely on it to control our flow of urine.

Thanks Chris

 

 

 

 

 

User
Posted 11 Feb 2019 at 13:44
In a normal person, the two work together, one involuntary and one conscious / sub-conscious. In RP the internal sphincter is almost always removed but the external sphincter can cope alone as long as it hasn't been damaged. The external sphincter relies on muscle memory so the brain (via the nerves) often has to re-learn how to control it.

In some cases, the urethral valve has to be re-positioned - so John had bladder neck reconstruction during the RP and the chance of external sphincter recovering was supported by the re-placement of the valve.

Once you don't have a prostate anymore, the external sphincter is at the top of the urethra.

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

User
Posted 11 Feb 2019 at 14:46

Originally Posted by: Online Community Member

Once you don't have a prostate anymore, the external sphincter is at the top of the urethra.

Lyn

If that is what she meant she doesn't explain it very well, her reference to it is within the first 2 minutes of the video.

Thanks Chris

User
Posted 12 Jun 2019 at 22:35
When I first contributed to this post some 8 months ago I was using 6 large pads a day. I kept up the Kegel exercises and one day, I don't remember when, I was suddenly down to one tiny Tena pad which I now only change daily for hygene reasons. Sometimes I even forget to put it in. 😂
User
Posted 29 Aug 2019 at 20:32

I am now 12 weeks post op. Robotic Radical Prostatectomy. For the first 10 weeks I was totally incontinent and no amount of squeezes had any affect. I have been using the Squeezy App. to help me remember to do the exercises. My surgeon said that the op. went well and that he did not put a stitch through the bladder sphincter which  had bothered me wanting an answer to total incontinence. The perinneal area had remained sore, I was aware of inflamation. Now quite suddenly I have quite a bit of control and am down from 6-8 pads a day to 2 a day.

There seems to be conflicting reports of which sphincters may have been removed or not.  As fas as I am concerned the bladder sphincter is intact, with no stitches through it!

I am 74 so things may take a little longer to recover but I can now see a future. 8 pads a day was getting me down so I tried Conveen sheath and bag. A huge success for a week or so from about wk 4 to 6 until I saw the surgeon who told me to stop immediately using it. I was to try and retrain my brain even if it meant going back to pads. So I did and put up with the discomfort etc. Has this paid off? I do not know whether it is brain training or natural recovery of the trauma area. The discomfort in the op. area has almost gone and this seems to be connected to my continence recovery.

Off to the pub now but will limit my drinking!

User
Posted 30 Aug 2019 at 07:54

I had a similar pattern of continence recovery and now 11 months post op I don't use any pads. I did get quite lax with the Kegel exercises at one point and noticed a few drips so got back onto it. Good luck with your ongoing recovery. There is light at the end of the tunnel. 

User
Posted 05 Sep 2019 at 17:16

I had my catheter removed in 10 days and had free flowing water works. Made worse as you have to drink a lot quickly at the time of removing the catheter. But this improved slowly, now I am 4 weeks - using 2 pads in 24 hours. Kegels and more kegels. My nurse said , the improvement may not be gradual, but abrupt like switching a light in steps. Hang in there. I cried on the day 1.

 
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