Continency after catheter removal

rmp42661

rmp42661

looks like post did not come

looks like post did not come through -- had robotic prostate surgery on October 2, catheter removed October 12 -- 56 years old and in great health prior - had a Gleason 8 which was actually a Gleason 9 upon removal - Great news was they are 96% certain that the cancer was contained to the prostate - now my question -- have been completely incontinet since the catheter removel - no drip, no leak -- every time I get out of a chair - Niagara Falls - so much that I have nothing left when I get to the bathroom -- I am probably 70% continent overnight -- been doing Keagle exercises and walking but have seen -0- improvement - doctor indicates it is normal - but I would think I would notice something by now - any help?

Max Former Hodgkins Stage 3

rmp42661 said:

looks like post did not come

looks like post did not come through -- had robotic prostate surgery on October 2, catheter removed October 12 -- 56 years old and in great health prior - had a Gleason 8 which was actually a Gleason 9 upon removal - Great news was they are 96% certain that the cancer was contained to the prostate - now my question -- have been completely incontinet since the catheter removel - no drip, no leak -- every time I get out of a chair - Niagara Falls - so much that I have nothing left when I get to the bathroom -- I am probably 70% continent overnight -- been doing Keagle exercises and walking but have seen -0- improvement - doctor indicates it is normal - but I would think I would notice something by now - any help?

"Normal"

rmp,

"Normal" after surgery is whatever happens to you individually.  Recovery rates run from almost instantaneous to never; most fall somewhere in between.

I wore diapers for 1.5 days after cath removal, and never needed them again. I did wear a pad for maybe a month, and liners after that.  But I had fair control within two days of the cath coming out.   It most likely will improve a lot, but only time will tell.

Do not worry about sex for a while, since that returns much more slowly than continence.  But DO work on blood flow. My doc recommended calias immediately after surgery, and also recommended a "pump." I never used a pump, and was having sex a few  months later with Trimix injections, and without Trimix within a few months beyond that.  But do work on the vascular issue, because atrophy can set in.

The Kegels should help in time, I would not stop them.

max

rmp42661

Thanks for the input, for

Thanks for the input, for better or worse, do not have to worry about sex due to lack of opportunities, so really a non issue on that -- just really concerned about the contency since I work in a business atmosphere and really interferes with work - wish I had your luck on the 1.5 days

Clevelandguy

Poster child

Hi,

Boy Max must be the poster child for cath removal/stayin dry.  I went from adult diaper to a heavy pad in a few weeks after cath removal.  Then heavy pad to a light pad within another few weeks.  Kinda leveled out at a light pad over the last year, still dribble a few more drops than I should when I pee.  But hey, I can live with this, it was about where I was before I had surgery due to Pca.

Hope you continue to improve over the following months, I had improvement/healing for about 1.5 yrs. after surgery.

Dave 3+4

hopeful and optimistic

physical theapy

Suggest that you ask the surgeon for a referral to a physical therapist so that you can ensure that the kegals are being done in a correct manner.

contento

rmp

rmp, sorry for the incontenence . I wasn't as bad but I did use pads for leakage for several months. After that I only had very minor issues with leakage sometimes. At this point you can only give yourself more time as everyone is different. Also rmp, please take this advice seriously. You stated you were a gleason 9 and the doc thinks it was contained which is great news. However You know that this is a very aggressive cancer.

Make sure you don't get lackadaisical about the timing of your psa checks going forward. If the doc wants every 3 months , do it every 3 months. It's in your best interests !

Good Luck -- contento

 

GeorgeG

Continence can take up to 18

Continence can take up to 18 months to get your final best result. As Max said, erections can take longer - up to 4 years. We are all different, like snowflakes. I leaked pretty bad for a few weeks but was completely off pads after a couple of months. As you are getting better try to go without pads when you can like at home working around the house. I found that the daily routine of holding a full bladder for post op radiation really got me strong down there. Good luck to you.

George

 

sabaileytx

Max Former Hodgkins Stage 3 said:

"Normal"

rmp,

"Normal" after surgery is whatever happens to you individually.  Recovery rates run from almost instantaneous to never; most fall somewhere in between.

I wore diapers for 1.5 days after cath removal, and never needed them again. I did wear a pad for maybe a month, and liners after that.  But I had fair control within two days of the cath coming out.   It most likely will improve a lot, but only time will tell.

Do not worry about sex for a while, since that returns much more slowly than continence.  But DO work on blood flow. My doc recommended calias immediately after surgery, and also recommended a "pump." I never used a pump, and was having sex a few  months later with Trimix injections, and without Trimix within a few months beyond that.  But do work on the vascular issue, because atrophy can set in.

The Kegels should help in time, I would not stop them.

max

gleason 9, 5+4, p3aN1Mx

Max gave some great advice. I just had a radical prostatectomy with pelvic lymph nodes removed (23), on September 8, 2017, at MD Anderson. Finally getting some relief from incontinenance, but far from over! My cancer is gleason 9 and has invaded the lymph/vascular system/bladder neck. I go back on Nov 2 to check PSA and see what's next. I've been having this pain that comes and goes and it feels like it's in a bone in my left groin area. It's getting more painful and more frequent. This pain started before my diagnosis of pCA, by about a month. It's getting so bad now that I want to yelp! The prior CT, bone scan and MRI were negative at MD Anderson, with exception of prostate tumor. Can the cancer be invading the bone without showing on scans, and can you feel the pain when it starts before showing on scans also?

sabaileytx

Clevelandguy said:

Poster child

Hi,

Boy Max must be the poster child for cath removal/stayin dry.  I went from adult diaper to a heavy pad in a few weeks after cath removal.  Then heavy pad to a light pad within another few weeks.  Kinda leveled out at a light pad over the last year, still dribble a few more drops than I should when I pee.  But hey, I can live with this, it was about where I was before I had surgery due to Pca.

Hope you continue to improve over the following months, I had improvement/healing for about 1.5 yrs. after surgery.

Dave 3+4

Cleveland

Hello Dave!  I grew up in Lorain, Admiral King class of 77!

sabaileytx

contento said:

rmp

rmp, sorry for the incontenence . I wasn't as bad but I did use pads for leakage for several months. After that I only had very minor issues with leakage sometimes. At this point you can only give yourself more time as everyone is different. Also rmp, please take this advice seriously. You stated you were a gleason 9 and the doc thinks it was contained which is great news. However You know that this is a very aggressive cancer.

Make sure you don't get lackadaisical about the timing of your psa checks going forward. If the doc wants every 3 months , do it every 3 months. It's in your best interests !

Good Luck -- contento

 

great advice

That is great advice!  My experience as well!

 

rmp42661

GeorgeG said:

Continence can take up to 18

Continence can take up to 18 months to get your final best result. As Max said, erections can take longer - up to 4 years. We are all different, like snowflakes. I leaked pretty bad for a few weeks but was completely off pads after a couple of months. As you are getting better try to go without pads when you can like at home working around the house. I found that the daily routine of holding a full bladder for post op radiation really got me strong down there. Good luck to you.

George

 

The problem is I can’t hold

The problem is I can’t hold any urine. As soon as I stand I completely lose everything by the time I get to bathroom nothing left to expunge. using full diapers for a week 5 to 6 per day with no improvement yet   That is why I’m concerned. Feel i am way behind the norm and maybe it won’t get better

Max Former Hodgkins Stage 3

Clevelandguy said:

Poster child

Hi,

Boy Max must be the poster child for cath removal/stayin dry.  I went from adult diaper to a heavy pad in a few weeks after cath removal.  Then heavy pad to a light pad within another few weeks.  Kinda leveled out at a light pad over the last year, still dribble a few more drops than I should when I pee.  But hey, I can live with this, it was about where I was before I had surgery due to Pca.

Hope you continue to improve over the following months, I had improvement/healing for about 1.5 yrs. after surgery.

Dave 3+4

Somthin

Everybody's good at something Dave !    We had a kid who had been a carnival worker before joining the Navy....he used to put a ball point pen up his nose and then remove it from his mouth..... It was all he was good at, but I guess it was something.   Never figured that one out at all.

max

 

Grinder

Perfectly normal rmp

rmp... You have a long way to go. You just got started. Trust me. I was incontinent for six months before I started to show improvement. After a year plus, I am now 96% continent with only a light mini pad to catch drips when coughing or exercising.

For the first six months I was keeping depends maxipads handy everywhere... In my glove compartment, in various rooms of the house, in wife's car, even in the pockets of my cargo pants, which are especially useful for storing pads.

If you are still incontinent after one-two years, then you will have to deal with it. Until then, relax, do the Kegels, and wait for the healing to take its course. This is not just a papercut healing up, this is nerve endings growing back together and becoming functional. It takes a LOT longer than just a few weeks, even though there are rare cases that did not fit the norm.

Take our word for it, every time you get off the couch, it will be a gusher, and that will last for some time before you start to see improvement. Hang in there.

 

sabaileytx

rmp42661 said:

The problem is I can’t hold

The problem is I can’t hold any urine. As soon as I stand I completely lose everything by the time I get to bathroom nothing left to expunge. using full diapers for a week 5 to 6 per day with no improvement yet   That is why I’m concerned. Feel i am way behind the norm and maybe it won’t get better

diapers

I am still in diapers after 6 weeks. But it's getting better every day now!