I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Continence struggles

User
Posted 19 Apr 2018 at 17:25

I had Robotic Prostatectomy a week ago. Catheter removed today and struggling to know what to expect. I have no control which I realise is what everyone feels at this stage. I would be grateful to know how the journey has gone for others as the info from the nurse has been quite generic and simply "it takes time". Is it better to try regular toiletting or just "go with the flow" (sorry.. bad pun)

User
Posted 19 Apr 2018 at 20:24
Hi John, I had surgery on 26 January. Like you when I had the catheter out and found I had no control at all my first thought was this is going to take a year or more or maybe never. After the first three days there was able a noticeable reduction in leakage. What then helped me a lot was when my wife saw a thread on here saying about measuring your leakage and how much you have drunk including times. I weighed the dry pad and then weighed the pad I changed and the difference gave me my leakage volume. Although amounts went up and down on a daily basis over the week I saw the improvement I was making. I became dry quite quick at night and then a significant improvement during the day at 3 weeks. At that time I was able to hold on longer and longer between pees and I deliberately tried to avoid the just in case urge. By the time I had the 6 week appointment for the path results I was down to using shields rather than pads.I am now dry other than the occasional small leak when I sneeze or cough, or if I do something unusual like throwing a ball for the dog. Also I take an age sometimes to squeeze all the last drops out after I have had a pee. I feel lucky that I am now confident at work and travelling. I hope all goes well with you. Steve
User
Posted 19 Apr 2018 at 20:48

Hi JBR,

(Does he? Really) :-)

Well done Riverman , you have made a remarkable recovery, compared to mine. Not so remarkable compared others.

Oops, sorry Riverman. ;-(

The extent to which you may or may not recover urinary control is anywhere from 0% to 100% and the time in which this might be achieved is in fact not known. I have read here the generally accepted rules or thinking that at 3 years post "whatever", where you ARE is as good as it gets.

This is NOT SO.

If you can access my story you will read how I dealt with the issue of uncontrollable peeing. Watered open spaces. Bagged up when I was tired. Had a few beers.

Your recovery will be unique to you.

If you can allow your mind to sync with your body and not fight it, you may do better than I did, and better than many others who try to conform to the supposed norm.

I started off weighing pads, documenting liquid intake, but it became a mare. As did bagels and PFEs. All a complete waste of time for me. Or were they? Maybe those hours and hours of PFEs did some good apart from just wearing me out?

Your recovery will be yours, and you may need to play about with options?

atb

dave

 

Edited by member 19 Apr 2018 at 21:07  | Reason: Not specified

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 19 Apr 2018 at 21:08

Like Dave says, dryness after prostate removal does seem to be a total lottery. A week on from prostate removal is a bit early to start worrying though. It could take a few months before your insides have adjusted fully to their new shape. Rather like you I just flooded continuously after catheter removal but noticed a bit of a difference after three months or so (but unfortunately there it stopped, or rather didn't stop). A friend of mine had his catheter removed three weeks ago and is dry as a bone. I managed to congratulate him, although through gritted teeth. JBR, I hope to be able to do the same with you in a little while....

Keep posting to the message board though. Irrespective of the longer-term outcome for you, there is a mass of experience here to help, but the really important bit is (and believe me I know how difficult this is) try, try, try to keep a positive attitude and concentrate on getting over the operation.

Tony

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

User
Posted 21 Apr 2018 at 14:47

Thank you

I am hearing that I need to be positive and keep working at it and anything else is down to the luck of your own response to surgery.

User
Posted 21 Apr 2018 at 20:54

Hi John,
I had catheter removed 9 days ago. I gained control 2 to 3 hours after its removal. I have been dry during the nights always till now. However on day 3 after catheter removal I started having some leakages up and then particularly when I walk or stand to often. I can't tell you how much I leak but not much, enough though to be a nuisance.
I recommend you to do the kegel exercises. We are told to do them as they help. Too early for me to say that, but I am doing them 3 times a day and hope for improvements.
Someone who is also too fresh on this ordeal as you is telling you to have patience as this is what I hear and I believe it.
I hope all goes well to you.
Paulo

 
Forum Jump  
©2024 Prostate Cancer UK