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Incontinence issues four months on

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User
Posted 16 Apr 2015 at 13:01
I only seem to come on here when I'm distressed! My husband had his RRP on 01.12.14. It was a great shock to everyone as there was no warning symptoms and it was pure fluke that his Gleason 9 tumour was discovered. It's been a tough one for him as he doesn't do illness.

Four months on he's dry at night and as instructed by the ed nurse, he doesn't wear pads at night, although he does wear briefs as his 'last line of defence' which he occasionally needs. It's the day time that's the issue. If he does absolutely nothing, then he's almost completely dry. He only has to walk any distance, or lift something or sneeze, and that's it. We've been on holiday for a week, and on the days he's sat on the beach he's fine. Walk anywhere and it all falls apart. As he is normally a very active 58 year old farmer, inactivity is not an option, but I think he'd set his heart on the holiday curing everything for him. Is there anyone who was at the same sort of level at the same sort of time who can give me some wisdom to impart?

We've been incredibly fortunate. It's easy to see that by some of the people who have posted on here. The surgeon is happy there's no spread, and the outlook is good. We just don't feel very fortunate at the moment. I'm very aware that I'm whinging, but it seems to have got the better of us at the moment

User
Posted 16 Apr 2015 at 21:02
Louise

I am perhaps not the right person to answer this, I was dry in a few days. I put the success down to doing the PFE before and after the op, my wife says it was the surgeons skill.

I tried to get a compromise between going to the loo when I felt the urge and not going" just to be safe". I still struggle to stop mid stream ( not that I do it on a regular basis).

I am sure someone with similar experiences to your OH will be along soon.

Good luck with your recovery.

Thanks Chris

User
Posted 16 Apr 2015 at 22:00

If he is dry at night then that suggests that there is nothing wrong with his mechanics, which should be a relief to you. As it is not mechanical, it is presumably stress incontinence which should improve with time. You don't say anything about how often he is doing his PFEs but my guess is that he isn't doing enough - or he is doing them wrong.

Post RP bladder control is very similar to the process toddlers go through. He needs to re-learn how to control the muscles that control urine flow. Small children get no sensation of needing to go. As time goes on, they learn how it feels, and then have to concentrate all the time to recognise that they need a wee. They might do quite well at home but as soon as you put them in front of a favourite TV programme or a new toy, they completely forget about the full bladder thing and have accidents.

Your OH has had his muscles cut and bashed, one valve removed and the other mucked about. In some cases, the remaining valve is actually cut out of the urethra and then stitched back in in a new position. He needs to relearn all those things that he first learned as a little boy - and concentrating is very tiring so accidents and leaking are likely to be worse in the afternoon and evening. Persist - those dry nights suggest that all will be well soon.

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

User
Posted 17 Apr 2015 at 06:36

Louise1969,

He is only 5 months post op, and his recovery and improvements may continue for up to 2 years or more, so early days as yet. For comparison, I was pad free after 7 months. And the improvement was gradual.

With regard to the dry at night issue, that is a good sign, but does he get warning if he needs to urinate and can he wake up and get to the loo alright? That would also be a good sign IMV. Gravity will also be helping night time control as I understand it. I was dry at night long before I got daytime control back.

Is he at all anxious about nocturnal dryness to the point where he loses sleep? Which might make him more tired during the day? If so why not wear a pad, if it removes that anxiety and allows a good night's sleep? Agree that late afternoon/evening or when tired is likely to induce muscle stress or fatigue leaking.

PFEs did not help me. What might help him is if he clenches and tightens things up before exerting, lifting a bale of hay or whatever. Control does get better slowly, but he is still very early on that road.
atb

Edit to add: is he wearing briefs during the day? I wore boxers until post op.  Briefs support pads and when pad free they continue to give that little extra support that works for me.

atb

dave

Edited by member 17 Apr 2015 at 07:37  | Reason: Not specified

User
Posted 17 Apr 2015 at 10:17

Louise, it is early days yet, and the statistics for attaining dryness are well on your side. Incontinence is not an easy thing to come to terms with, but even if (and I hope this is not the case) your OH does end up in the 10-15% who have continuing problems, there are solutions that make a near-normal life attainable. If you have a look at my profile, you will see that my characteristics were almost the same as for your OH, dry at night or when having an inactive day, and at first flooding during activity, but it did get better. Also I was well-aware of the state of my bladder and when I needed to empty it. However I was diagnosed by my urologist as having sphincter distortion (not "stress incontinence" even though I was dry at night), hence the subsequent operation.

From my point of view, the main issue was getting incontinence out of the front of my mind - before doing anything having to think "will doing X make me flood" or "have I remembered to pack the emergency kit?". After 6-8 months or so, I found that the pressures of a fairly stressful job took over and it was easier to think about other things first. Now the subject only surfaces occasionally, this time triggered by smug politicians avoiding telling me why there is a 12 month waiting list to see a urologist despite their record investment in the NHS, but that is another story.

Tony

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

User
Posted 19 Apr 2015 at 21:52
Hi, as everyone has said recovery time is different, but it's reassuring to know there are procedures which can help, sling, Aus 900.

My husband was dry at night, but needed 4 to 5 Tena size 2 every day. While he was lying down no leakage, but as soon as he stood up it was a different story.

He was fitted with an artificial sphincter , which has worked very well. Now down to one pad a day. Even when working in a newly acquired allotment .

Leanne

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User
Posted 16 Apr 2015 at 21:02
Louise

I am perhaps not the right person to answer this, I was dry in a few days. I put the success down to doing the PFE before and after the op, my wife says it was the surgeons skill.

I tried to get a compromise between going to the loo when I felt the urge and not going" just to be safe". I still struggle to stop mid stream ( not that I do it on a regular basis).

I am sure someone with similar experiences to your OH will be along soon.

Good luck with your recovery.

Thanks Chris

User
Posted 16 Apr 2015 at 22:00

If he is dry at night then that suggests that there is nothing wrong with his mechanics, which should be a relief to you. As it is not mechanical, it is presumably stress incontinence which should improve with time. You don't say anything about how often he is doing his PFEs but my guess is that he isn't doing enough - or he is doing them wrong.

Post RP bladder control is very similar to the process toddlers go through. He needs to re-learn how to control the muscles that control urine flow. Small children get no sensation of needing to go. As time goes on, they learn how it feels, and then have to concentrate all the time to recognise that they need a wee. They might do quite well at home but as soon as you put them in front of a favourite TV programme or a new toy, they completely forget about the full bladder thing and have accidents.

Your OH has had his muscles cut and bashed, one valve removed and the other mucked about. In some cases, the remaining valve is actually cut out of the urethra and then stitched back in in a new position. He needs to relearn all those things that he first learned as a little boy - and concentrating is very tiring so accidents and leaking are likely to be worse in the afternoon and evening. Persist - those dry nights suggest that all will be well soon.

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

User
Posted 16 Apr 2015 at 22:52

Sorry Lynn, but I have to take exception. If the valve isn't closing properly then no number of "correct" or "incorrect" PFEs will help. You can have a pelvic floor like a bulldog clip, but if the valve seating is leaking, then you will be incontinent and have to consider alternative solutions. I am a bit fed up with the "if you are dry after prostatectomy, then that shows how effective PFEs are" view. They may help in some cases, in others they won't. Continence is affected by a whole lot of factors, pelvic floor strength is only one of them. And, no, I don't need to re-learn how to control my bladder.

Edited by member 16 Apr 2015 at 22:54  | Reason: Not specified

Tony

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

User
Posted 17 Apr 2015 at 01:13

Whoa - take exception if you like but you clearly haven't read what I wrote. A faulty valve is mechanical damage - if you had read previous posts from me on incontinence you would know that I am not a big fan of PFEs and John's urologist said they were a waste of time unless the problem is stress incontinence.

Interestingly, relearning bladder control is not about PFEs either - the urologist was a fan of retraining

The point here is that the guy is dry at night which indicates there is nothing wrong with his valve. He seems to have stress incontinence - you don't. None of my comments therefore apply to you - apology accepted :-)

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

User
Posted 17 Apr 2015 at 06:36

Louise1969,

He is only 5 months post op, and his recovery and improvements may continue for up to 2 years or more, so early days as yet. For comparison, I was pad free after 7 months. And the improvement was gradual.

With regard to the dry at night issue, that is a good sign, but does he get warning if he needs to urinate and can he wake up and get to the loo alright? That would also be a good sign IMV. Gravity will also be helping night time control as I understand it. I was dry at night long before I got daytime control back.

Is he at all anxious about nocturnal dryness to the point where he loses sleep? Which might make him more tired during the day? If so why not wear a pad, if it removes that anxiety and allows a good night's sleep? Agree that late afternoon/evening or when tired is likely to induce muscle stress or fatigue leaking.

PFEs did not help me. What might help him is if he clenches and tightens things up before exerting, lifting a bale of hay or whatever. Control does get better slowly, but he is still very early on that road.
atb

Edit to add: is he wearing briefs during the day? I wore boxers until post op.  Briefs support pads and when pad free they continue to give that little extra support that works for me.

atb

dave

Edited by member 17 Apr 2015 at 07:37  | Reason: Not specified

User
Posted 17 Apr 2015 at 08:38
He is doing his PFEs- religiously. His ed has upped the amount on the last visit, and checked he is doing them correctly (he is)

He is dry at night and rarely seems to need to wake up to go now- this has improved. Sadly, he did have a pre existing shoulder condition, which seven hours upside down on an operating table has not improved, so he possibly doesn't dleep as well as he should.

He wears boxer trunks as opposed to briefs, but similar reasons I suppose. Harvest festival knickers as my mother used to call them (all is safely gathered in)

The notion that if he is dry at night it's just a matter of time is exactly what I needed to know. I can tell him he will definitely get there eventually.

Thank you all

User
Posted 17 Apr 2015 at 09:16

I was immediately dry at night, and one year on, from 5 pads per day, easily cope with one, and if I am not doing much, very close to being dry during the day. Hope this helps - things do get better but you need to be patient.

Paul

Stay Calm And Carry On.
User
Posted 17 Apr 2015 at 10:17

Louise, it is early days yet, and the statistics for attaining dryness are well on your side. Incontinence is not an easy thing to come to terms with, but even if (and I hope this is not the case) your OH does end up in the 10-15% who have continuing problems, there are solutions that make a near-normal life attainable. If you have a look at my profile, you will see that my characteristics were almost the same as for your OH, dry at night or when having an inactive day, and at first flooding during activity, but it did get better. Also I was well-aware of the state of my bladder and when I needed to empty it. However I was diagnosed by my urologist as having sphincter distortion (not "stress incontinence" even though I was dry at night), hence the subsequent operation.

From my point of view, the main issue was getting incontinence out of the front of my mind - before doing anything having to think "will doing X make me flood" or "have I remembered to pack the emergency kit?". After 6-8 months or so, I found that the pressures of a fairly stressful job took over and it was easier to think about other things first. Now the subject only surfaces occasionally, this time triggered by smug politicians avoiding telling me why there is a 12 month waiting list to see a urologist despite their record investment in the NHS, but that is another story.

Tony

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

User
Posted 19 Apr 2015 at 21:52
Hi, as everyone has said recovery time is different, but it's reassuring to know there are procedures which can help, sling, Aus 900.

My husband was dry at night, but needed 4 to 5 Tena size 2 every day. While he was lying down no leakage, but as soon as he stood up it was a different story.

He was fitted with an artificial sphincter , which has worked very well. Now down to one pad a day. Even when working in a newly acquired allotment .

Leanne

User
Posted 20 May 2015 at 08:08
Another month on from this, and not much has changed. Last time we went to see the continence nurse, she tested his PFEs, and was quite happy he was doing them correctly. Sadly it's just going to take longer than he hoped. On the positive front, the OH says he's had some stirrings in the last month. On the negative side, he still won't let me near him until he's continent. I keep telling him one body fluid is pretty much the same as another, but he's not buying it.

Roll on continence

User
Posted 20 May 2015 at 09:44

I can understand his reluctance, my husband would be the same.

I think, in general, women are more practical.

I don't know how big your bath or shower are but .......... perhaps you could persuade him that the next time he has a stirring, no matter how slight, you could get in the bath. Leaking urine wouldn't be so obvious then ?
Just a thought - ignore it if you think it's offensive !!

We can't control the winds - but we can adjust our sails
User
Posted 20 May 2015 at 09:48

Louise

I wish my OH had the same attitude to body fluids! From last April, I have had little change, too. For me, the finishing line is in sight, but I'm standing still. I hope you'll see a sudden improvement in the number of pads needed, which happened to me around 4/5 months.

Paul

Stay Calm And Carry On.
User
Posted 20 May 2015 at 10:56

His EF recovery will be helped by him helping himself to a certain extent, but there is nothing better than interference from a willing and eager 3rd party. ;-)

Don't know what level or degree of intimacy you had before, maybe he is self conscious or embarrassed?

Why not remove the topic of intimacy from the equation completely and just take a shower together? Don't wait for "a stirring". Just shower together and interfere with him when you are happy he is relaxed and least expecting it! This assumes that he does not have a dicky heart or high blood pressure:-o

As SF2 remarks, if only all partners were as pragmatic about bodily fluids and interested in helping as you are. At least the signs are good for you both.

Good luck.

dave

PS 4 months on is still very early days for EF recovery and Urinary control.  Don't lose hope. 

Edited by member 20 May 2015 at 11:42  | 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.

 
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