Walking after RP

User

Posted 14 May 2016 at 08:28

Has anyone got any advise about how far or even how long you should walk for after RP. I am 3 weeks after RP and am finding it difficult to stay stood up for more than an 45 minutes to an hour without some form of urine leaking. I am doing the PFE every day and trying make sure i can get to a toilet every hour to empty my bladder in the hope I am re-training myself.

Any advise would be useful.

User

Posted 14 May 2016 at 11:08

Hi Peter,

I can't really help you on the specifics of RP as I have only ever had RT & HT, I guess your doctors/nurses should be able to advise?

However once the immediate effects of the RP are over I suggest you should walk just as far as you ever did.

My Consultant encourages his patients to do lots of physical exercise before, during and after RT, aparently it minimises the side effects.

I have a mate who had RP and we both go out walking together quite often, we did 10 miles last Wednesday, including a pub and some al fresco toilet breaks.

Like you, following RT I was initially quite concerned not to overload my bladder and/or embarass myself in public. However after a few months I developed a sort of devil may care attitude. Long term you have two choices, either you can arrange your life around toilet breaks, or you can start to stretch things out and see how long your baldder can hold out. I mean if the worst comes to the worst you have an excuse, you have PCa, and most shops and offices will let you use their facilities in an emergency.

Dave

User

Posted 14 May 2016 at 11:26

I'm like Dave in that I have only had RT/ HT but was encouraged to keep as active as possible. There were occasions when I was caught short whilst out walking and found some interesting places to use!

Macmillan have Toilet Cards which you can order from their website. They were also available from my local cancer centre . Actually I didn't obtain one but I have a friend who has had RP and he did. He found it quite useful.

https://be.macmillan.org.uk/be/p-22493-generic-toilet-card.aspx

I hope this helps and good luck !

John

User

Posted 14 May 2016 at 11:44

Hello Peter,

I'm still relatively new to the forum, so I'm familiar with RP.

As for myself, I've had radiotherapy, and I'm also on hormone therapy.

I've got a Macmillan toilet card and I've used it on occasion around my local town. Even after treatment has finished, I still have an urgent need to go. I go for my follow-up appointment with my oncologist on Monday, so I'll ask her advice.

Frank.

User

Posted 14 May 2016 at 14:05

Hi Peter

After RP I decided that I would do as much walking as I could comfortably manage. I went to Boots and got a supply of hugh volume pads and following advice from this forum got in the shower wearing a pad and let the old bladder just empty its contents. Lo and behold the pad held it and no external signs. After that I would pad up, take spares with me plus suitable disposal bags, stuffed them in my haversack and went about my normal business. After a while I got fed up with pads and so contacted Coloplast about their Conveen sheath + leg bag system. Wonderful - real freedom. Sheath fits like condom and has a tube going to leg bag. Very comfortable and can go when walking , talking or whenever. Some will say that using makes you lazy. I would say - total rubbish. You still do your PFE's and you only go when you give yourself permission or in the case of getting physically mobile, you seep into it as you walk. That is no different to seeping into the pads when you walk, except that I found the slight pressure from the pads caused more discomfort.

For me the Conveen system allowed me to just get on with my life and Coloplast fixed a prescription with my GP. Everything was delivered by courier. After about 8 weeks I had enough control back to stop using the system and am now back to normal except if I have an enormous sneeze which I was not ready for. Just my experience but I would say you do what you want to do and don't be dictated to by what you think others might think. It's your life so sod everyone else and use anything andeverything available to make the most of every day.

All the best,

Kevan

User

Posted 14 May 2016 at 14:43

I used ID incontinence pads from Id-direct.com. They are level 2 and would hold a lot but don't feel uncomfortable to wear.

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User

Posted 14 May 2016 at 11:08

Hi Peter,

I can't really help you on the specifics of RP as I have only ever had RT & HT, I guess your doctors/nurses should be able to advise?

However once the immediate effects of the RP are over I suggest you should walk just as far as you ever did.

My Consultant encourages his patients to do lots of physical exercise before, during and after RT, aparently it minimises the side effects.

I have a mate who had RP and we both go out walking together quite often, we did 10 miles last Wednesday, including a pub and some al fresco toilet breaks.

Dave

User

Posted 14 May 2016 at 11:26

https://be.macmillan.org.uk/be/p-22493-generic-toilet-card.aspx

I hope this helps and good luck !

John

User

Posted 14 May 2016 at 11:44

Hello Peter,

I'm still relatively new to the forum, so I'm familiar with RP.

As for myself, I've had radiotherapy, and I'm also on hormone therapy.

Frank.

User

Posted 14 May 2016 at 14:05

Hi Peter

All the best,

Kevan

User

Posted 14 May 2016 at 14:19

I must agree the pads are pretty uncomfortable and I have ordered some different brands to see if they are a better fit, my only concern is if they will hold enough urine, I am not passing much when I am walking but it does add up over an hour or two.

User

Posted 14 May 2016 at 14:43

I used ID incontinence pads from Id-direct.com. They are level 2 and would hold a lot but don't feel uncomfortable to wear.

User

Posted 14 May 2016 at 20:58

Originally Posted by: Online Community Member

Any advise would be useful.

PKH&P

We all recover in different ways and at different speeds. Your own body is the best guide to how far or long you should walk, just remember you have to walk back. Recovery from RP can be different from recovering from RARP or LRP. Some guys on here just pad up and walk saying it helps with the incontinence recovery. I was almost dry 4 days post catheter removal, I did about 20 contractions 4 or 5 times a day sometimes more sometimes less. I only went to the loo when needed never "just in case" I assume you are only 7-10 days post catheter removal so very early days.

Following a series of urethral ops 16 months after my RARP in was left incontinent and the second bout is proving harder to sort.

I was leaking up to 250 ml a day, I did my PFEs every day even downloaded an app for the phone with reminders and prompts. Much to the dismay of my incontinence nurse after 10 weeks I gave upon the PFEs, that was 16 weeks ago and I am now down to 3-5 ml a day. Kevan's post covers most things. You many not get the sheath system on prescription, most urology consultants and incontinence nurses disapprove of the sheath system post RP as Kevan's post. I used the sheath system for a while and it gave me the confidence to hang on that bit longer before going to the loo. After a few weeks I was able to revert back to pads, I got my tenna2 pads on the NHS and cannot say I have ever found them uncomfortable.

A tenna2 pad is quoted as absorbing 450ml it will actually hold 750ml.

It is early days for you, but someone said to me "stop thinking about the incontinence and put it too the back of your mind", that has helped. Use the "show search "near the top of the page and search for "incontinence" there are lots of stories and advice.

Hope all goes well.

Thanks Chris

User

Posted 14 May 2016 at 21:00

Originally Posted by: Online Community Member

Any advise would be useful.

PKH&P

Following a series of urethral ops 16 months after my RARP in was left incontinent and the second bout is proving harder to sort.

A tenna2 pad is quoted as absorbing 450ml it will actually hold 750ml.

Hope all goes well.

Thanks Chris

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