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Post Op care/advice

User
Posted 08 Mar 2017 at 09:45

I had RARP on 26th Jan 2017.  I was discharged on 28th and given a follow up appointment on 29th March (9weeks).  The catheter was taken out on 6th Feb.  I was given no instruction or advice on what to expect, what I should do / should not do, in fact most questions were met with the reply "we're all different"  I expected someone (nurse) with give me clear guidance on what to do / not to do and specifically I expected that there would be a professional in the process who knew all there is to know about the continence issue to advise me specifically . . . . nothing.  First question - is that the norm throughout the country or have others had that close/clear guidance and instruction?

Next, I was told (prior) to the op that I would be incontinent and would have to learn/teach my body how to learn how to control/stop the flow.  In my recent experience (and I have no way of knowing if I am 'normal') I can mentally/physically control something down there that stops the flow i.e. whilst I am conscious I can make a conscious effort (which for most of the day is without effort) to keep the tap closed and to open it at will.  When I am unconscious (asleep) I lose control (because I am asleep/not conscious) which seems logical/obvious. That said I have read posts here about people having control (dry) during the night and not during the day which to me seems illogical but that's based upon me being 'normal' OR am I abnormal?

 

 

 

User
Posted 08 Mar 2017 at 10:46
Hi Nomad

You should have had a nurse assigned to you and that should be the first point of contact if you have any questions. If you haven't been given a nurse then I suggest that you contact the urology department, failing that can I suggest that you use your hospital's P.A.L.S. site and express your concerns

Good luck

User
Posted 09 Mar 2017 at 11:57

From day one I was given the name and direct telephone number of a 'specialist' nurse. My calls (bleeding, pain, swelling (not incontinence)) are received by an answer machine and replied to within 24 hours. The replies generally start with "have you been to see your GP about this" and end with "If you think it needs urgent attention you should go to A&E."

I've made the same calls regarding the same issues to a nurse employed by this charity and ALWAYS received thoughtful, well balanced, helpful, answers to the same questions/issues. If I had my time over again, I would have gone to my GP the day after my op and I would have made regular forward appointments with him putting the issues (unfairly perhaps) on his table and telling him to sort me out.

It seems clear that there are different levels of service/levels of quality of service in different parts of the country and I am sure that mine has been better than some and worse than others - how much better and how much worse I wonder?

User
Posted 09 Mar 2017 at 18:32

Hi, usually men are dry at night first and then regain their continence during the day later - perhaps something to do with gravity. It isn't a massive issue that you are the other way round, just uncommon.

Not everyone has a nurse specialist, because not all CCGs will fund this kind of service. Neither my husband, dad or father-in-law ever had support like this.

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

User
Posted 10 Mar 2017 at 07:16
Hi Nomad

I think it is postcode lottery. Here in East Kent I was offered an afternoon session with the specialist nurses to go through what to expect pre-op, hospitalisation and post-op. The session was well attended by patients and partners, and was very helpful. I've just had my pre-op, which was also very good, and I hope this continues to the post-op next Friday!

Chris

User
Posted 10 Mar 2017 at 13:53

Hii Michael

I've replied on your other post also, so further to that. 
This is worth a view also https://www.youtube.com/watch?v=qMR-rAVlbV0

Also, as we all know accessing GP etc has changed massively from the 1950's.   So to answer your question
I was similar after discharge , great NHS service up to Op, excellent  and then nothing in many ways after.
I was given info. pamphlets, Kegal exercise photocopies etc  and told at a guess 90%+ of risks, side effects and expectations.

So apart from the hosp/consultant milestones, as you/we all have - ie 6 to 9 weeks post op.
I sort out by own PSA 3 monthly checks via Nurse at GP surgery.   Other route was A&E for me which was fine as had son who could drive
and hosp. close by.  So we were fortunate.

Others have posted and the only other things I would say, assuming urine is flowing and clear you are doing quite well.
Early days.      It might be an idea if you are not - to keep a basic 'water' diary,  volume in  approx . and out. ?
Frequency .    The other logic is if you had restrictive flow before op and a very strong bladder  and it need times to 're-sync'.
Have you noticed a far stronger and quicker flow  ? (as no prostate to re strict)
Also at sleep  the body should produce less urine from the kidneys.  Again not sure if that 'control' system is effected.
ie have you any idea if you are producing more urine at night that pre-op or drinking more or sleeping longer ?
A diary / notes , certainly good when you have your next meet and also will probably show you that things are improving.
It's about self help and diagnosis nowadays I feel, in most areas of life.   

One thing I wasn't told about was climacturia (have a google).   Probably a few members have this.   It got me thinking from your post
exactly what the mechanism is going on.  Knowing how our plumbing has been rejoined and Seminal Vesicles removed  I can only ASSUME
my internal bladder sphincter is relaxing / not strong enough or not contracting more as would normally occur it  seems.
OR  there is urine backed up behind the External sphincter and that obviously does relax .  Like most things it probably a combination of the 2 and nerve signal damage.      I didn't realise  the complexity of the male plumbing until quite recently and the prostate being between the 2 sphincters / gates / valves etc
    
Finally if you haven't, try and  cut out or down on caffeine and alcohol, all helps   ? Certainly restrict in evening.  

There is probably a local Prostate support group nearby ?  They often provide local phone numbers and can be a great source of help.
   
OK ?

Gordon

Edited by member 10 Mar 2017 at 14:30  | Reason: Not specified

User
Posted 10 Mar 2017 at 21:52

Thanks for the helpful posts.

I will spend some time studying the youtube vids explaining the physiology and the plumbing and I expect that will be help me understand and adapt.

I have (for some time) enjoyed a 'nightcap' and I do understand that's not helping with control issues but I am not going to let my bladder (sphincter) dictate my life, the sphincter will just have to learn to cope with the 'nightcaps.''

User
Posted 17 Mar 2017 at 08:36
Hi Nomad

I think it is postcode lottery. Here in East Kent I was offered an afternoon session with the specialist nurses to go through what to expect pre-op, hospitalisation and post-op. The session was well attended by patients and partners, and was very helpful. I've just had my pre-op, which was also very good, and I hope this continues to the post-op next Friday!

Chris

User
Posted 17 Mar 2017 at 13:33

Hi Nomad
It is very early days for you yet. I was continent 98% when the catheter came out both day and night. I like a drink and there were quite a few full pad nights , but it all came good. There was also urgency for a while too. Just give it time

 
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