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Incontinence 8 week post op

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User

Posted 28 Nov 2015 at 20:30

Louise,

It was almost a year before I abandoned pads and opted to just P myself whenever. And even now, OP date May 2013, now Nov 2015 I am still improving on the continent front. And, this is with hardly any PFEs, I gave them up as too hard work, no Kiegels, and no Crunchy Nut flakes. Plenty of beer and lots of gym.

He may well improve slowly slowly slowly, hopefully. I would try tighter pants. Maybe try ladies panties they tend to come in smaller tighter snugglier sizes! Well, that is my excuse anyway! ;-)

have a great weekend

dave

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 28 Nov 2015 at 20:48

Dave,

I think oh has probably given up on pfe as well. They've done him no good. He had his pelvic floor strength measured in August. Nurse said it was very good.

He can certainly relate to the plenty of beer, although he tends to stick with wine more often now. Four pints is where he starts to lose control.

I think you are very brave to give up wearing pads when not fully continent. I'm not sure he would do this. He won't even change down to level one.

Maybe I'll find him some nice frilly pants for Christmas. Or maybe not!!

User

Posted 28 Nov 2015 at 21:28

Hi Louise,
John was dry very quickly after the op but the hospital had advised him to give up caffeine so we wonder if that has made a big difference. He drinks lots of cranberry and any tea is decaf. The only time he leaks is when he drinks beer - so he just drinks wine most of the time.

Our surgeon's view was that PFEs wouldn't do any harm but wouldn't make it any better either :-0

Edited by member 28 Nov 2015 at 21:29 | Reason: Not specified

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

User

Posted 28 Nov 2015 at 22:43

Rich tried decaf donated tea and coffee for about ten weeks. He had dreadful trouble post op with all over body itching. No one could work out what it was. We went on holiday in April, and the itching went. We came back home and it started again. We went away for a weekend and it stopped. We finally worked out it was the decaffeinated stuff causing the itching. I think it's something to do with the chemicals they use to decaffeinated stuff.

However, he has cut down on his coffee and tea intake.

And ditto with the beer. He sticks to wine too most of the time.

User

Posted 29 Nov 2015 at 08:50

I've really changed nothing at all since treatment. I drink far too much alcohol really and have not cut back on beer or wine at all. However it has to be wine in the evenings as a very full bladder with some of the meds I take has led me to wet myself maybe 3 times since op.
I drink 4 cups of strong coffee each morning and then none all day. I wouldn't have decaff in the house. I worked in the oil and chemical industry for 23 yrs and the stuff they use is a Cat3 Carcinogen ( I was a COSHH assessor also ).
I guess I was just VERY lucky to be continent from day 1. I did pfe with the catheter in as advised and I casually do them each day while I read the paper. I think if I stopped I'd be fine. As for the odd dribble after my wee I still get that but have been pad less for 2 months. I used to wear trunks too but mr wriggly sits in the pouch and can drip sometimes. With briefs you can finish and point him up at your belt. He never drips then. Also , did you read my post Bishops Bulb ? I might bump it as it was missed over a weekend I think
Best wishes
Chris

User

Posted 29 Nov 2015 at 09:07

No Chris, not read it, but it sounds... Interesting??!

User

Posted 06 Jan 2016 at 17:04

Hi All ,

Johny here,

Well im in to month 7 post op and im still on 3 pads a day.

Relatively dry at night but during the day while moving around im still leaking like a government cabinet meeting!!!!!

Today i went to see the consultant he said........ within the first 3 months after surgery is usually when most recovery of the incontinence takes place.

Any thoughts on what he said?

User

Posted 06 Jan 2016 at 17:13

Originally Posted by: Online Community Member

Hi All ,

Johny here,

Well im in to month 7 post op and im still on 3 pads a day.

Relatively dry at night but during the day while moving around im still leaking like a government cabinet meeting!!!!!

Today i went to see the consultant he said........ within the first 3 months after surgery is usually when most recovery of the incontinence takes place.

Any thoughts on what he said?

Hi Johnny,

In my case I wouldn't agree with him!.....

When I think back to where I was with incontinence at 3 months post op compared to where I am now at 18 months post op there has been a huge improvement during that time span.....

Although I still leak ( I use 1 pad a day ) it's nothing compared to how I was leaking at 3 months post op!

Don't lose hope!

Luther

User

Posted 06 Jan 2016 at 17:16

I'm so sorry Johny
I have been wondering how you're getting on , and 3 pads a day is obviously disheartening for you. I really do think it's luck of the draw and surgeon skill / experience / technique. Much is probably the same for nerve sparing and recovery. There are many people stuck with post-op incontinence like yourself who will help you I'm sure.
Best wishes
Chris

User

Posted 08 Jan 2016 at 21:59

Hi Johnny

Sadly, you appear to be taking a similar path to my OH. I really do believe it's just the luck of the draw.

At 7 months post op, I think the oh was around the same. He said that he'd go a few weeks where there was no improvement, then suddenly he would take a leap forwards. At 13 months post op, he's now mostly on one pad a day. He has two physical jobs (farmer and marquee company), and this doesn't help. I keep nagging him to get other people to do the rough stuff, but...

Over Xmas, while he was doing the bare minimum, he had three completely dry days. Now he's back at work, he's leaking a bit again.

I completely disagree with the three months bit. Load of tosh.

I remember my oh having a bit of a melt down around your stage post op. He was despairing of everything, and spent a week drinking a fair bit. Which did not help in the slightest!

So here is my advice for what it's worth. And please don't shout me down everyone, I'm only writing down how I managed to get through it.

Try and change your mind set. Look on it as a journey. As long as there is some improvement to date, it will probably continue to get better. It's just going to take longer. Think of it as the rent you have to pay for being one of the ones with operable cancer. You don't mention ed. if that's an issue, don't put off trying to fix it until the continence is sorted. This is what my oh did. We've recently used injections with success, and should have done it sooner. It's changed his perspective on the incontinence.

I hope this helps.

Louise x

User

Posted 08 Jan 2016 at 22:11

Why would anyone shout you down Louise? you and your OH have had a tough time from the start with all the various issues. What you have said to Johny sounds like good practical advice borne out of experience.

User

Posted 08 Jan 2016 at 22:17

Lol thanks Mo.

I just read it through and added that bit. I wondered if people would think what the hell would I know, I'm not the one who has to put up with pads (yet!)

And I'm not sure we've been through that much more than others, it's just that my oh is a typical tough boy farmer, and I need to talk to someone! And you all listen so well x

User

Posted 09 Jan 2016 at 14:55

Hi all.

thanks for the reply's, i really do appreciate the support, guess im a bit fed up at the moment, bit frustrated to.

The incontinence is a b**** for sure but i get on with life so to speak, its just taking so long.

Erectile dysfunction is another thing altogether, iv been given 50mg Viagra 3 times a week, not sure what the score is with it results wise, are the effects gradual? i will start another post with ref to this as i have some specific questions for members.

And my Lymphodema continues to plague me around the op site, i had 26 nodes removed but fluid continues to gather, at times it can be rather uncomfortable.

Hey oh , im still here that is the main thing.

Johny

User

Posted 09 Jan 2016 at 14:59

Johny , you're a hero mate truly
I feel sorry for myself but you are coping with ED , incontinence and Lympho all together . I admire you mate and your attitude , and know what you are going through as a whole family . Keep strong brother and talk anytime . Ask anything
Chris

User

Posted 09 Jan 2016 at 15:33

Thanks Chris,

Appreciate it for sure

User

Posted 09 Jan 2016 at 22:23

Johny

you certainly are having a rough time with it all. The questions you want to ask can and will all be answered. I am amazed constantly about the open and honest sharing of the most intimate things on here all in the interest of helping each other.

User

Posted 03 Jun 2016 at 10:21

Hi All,

Quick update on my incontinence........no change!

Post op 12 months now....still on 3 pads a day.......starting to get to me now.

Anyone out there had any changes and dried up after 12 month plus?

The doc is taking about a sling or artificial on off valve of some sort, but that means going under the knife again, something im trying to avoid.

Advice, thoughts, experiences anyone?

User

Posted 03 Jun 2016 at 14:19

My experience may not be typical, but I reached my plateau at about six months, on at least three pads per day.

Obviously the next step is entirely up to you and your medical team, but having undergone both operations, I can report that they were no big deal when compared with the original prostatectomy. Try not to let the leakage get to you; I did and ended up in a pretty dark place - not much fun for the rest of my family.

My AUS, while not perfect, continues to work extremely well (now six months on from activation).

Tony

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

User

Posted 03 Jun 2016 at 14:40

Why not try the sheath system for three months to see if it has any benefit. My Second bout of incontinence was not a direct result of the RARPbut, perhaps just coincidence but with the sheath system I went from 200 mls a day to about 5 mls. I also stopped doing PFEs and perhaps again coincidence but my incontinence improved.

Thanks Chris

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