Advice on incontinence

User

Posted 03 Apr 2016 at 14:14

Hi people Just been diagnosed and slightly worried about the incontinence thing but enjoyed reading this conversation. At what time did anybody get back to work ?

User

Posted 03 Apr 2016 at 14:53

Cornish

I had the Da Vinci robotic surgery and was back at work after 4 weeks,some might say that was too early, the NHS info for RARP says back at work in 2 to 6 weeks, but it's not a race, we all recover at different rates. My job involved part office based and part driving to site meetings throughout the UK, not a physically demanding job.

I feel I complied with the law regarding driving after 4 weeks but in hindsight as I learnt from this site, I perhaps should have also have consulted my companies insurance company.

Lots of things will or may affect your recovery.

Thanks Chris

User

Posted 03 Apr 2016 at 17:12

Thanks Chris, I have quite a physical job but still waiting for what the consultants advise for treatment. RPhas been mentioned. Cheers mate

User

Posted 03 Apr 2016 at 17:13

Cornish

I was off for over 4 months following surgery, in fact I had to "bully" work to let me go back...and they're making me do a 6 week phased return....and to be honest I appreciate it as my head is mince trying to get back up to speed...they're being very cautious....and supportive

I was driving after 6 weeks and when I rang the insurance company they were happy for me to drive after 6 weeks with no additional evidence...since then I've passed my IAM assessment too before I went back to work (kept me from being too bored)

The moral here, is that we're all different and recover at different rates...listen to your body, your support team (medical and, hopefully at work) and your partner....they all have a vested interest in you going back when you're ready too....besides, the better weather will be here soon....

Duncan

User

Posted 19 Mar 2017 at 12:17

Everybody is different, I am now dry after 6 months post OP, but it was hard at the start, you must be patient and take one step at a time, I was told not to drive for 3 months, it is a major OP and you must give things time to heal, I think another thing is sometimes the catheter is taken out too soon mine was in for 3 weeks a bit of a pain but gives things more time to heal, any questions please ask,
best wishes
Paul

User

Posted 19 Mar 2017 at 13:00

There does seem to be a wide range of recoveries. I was back at work 2 weeks post-op, and driving. Self-employed life... I was 'dry' (barring the occasional dribble) almost immediately, though I have been advised to review that situation due to starting HT and soon to have RT. I guess it will be what it will be. Pelvic floor exercises aplenty, and trying get fit again (now 2 months post op). To be honest, the physical recovery from the surgery is what has been frustrating me the most, but then apparently I am the most impatient person on the UK!

cheers
G

User

Posted 11 Jul 2017 at 20:20

Tony, are you aware if using the Conveen prolongs the normal incontinence time to heal at all?

User

Posted 12 Jul 2017 at 19:22

There is a view that using the sheath and bag makes the wearer lazy and so prolongs recovery. There may be some truth in this for some people (particularly for a friend of mine who just said "sod it, I'm going to get on with my life." and as far as I know he is still using the sheath and bag) but I suspect there is an element of folklore about the subject, as with pelvic floor exercises and diets.

For me, going around with a soggy pad or pair of disposable briefs just made me feel thoroughly depressed as I was trying my hardest with PFEs, TENS machines and so on with absolutely no effect. Once I was using the sheath and bag, the pressure on me eased, I was able to get back to work and once my sphincter had started some limited activity (about three or four months from operation I think), I was concious of it and given a close enough toilet, I could avoid filling the bag. I did not use it as an easy way out. The sphincter just suddenly started working again (a bit) by itself.

I guess that is a long-winded way of saying that from my point of view, no, the sheath and bag didn't prolong my recovery. It's just unfortunate that, having a slight reactivation of my sphincter, there is stopped and absolutely nothing helped any further. Hence the sling and eventual AUS operations.

I have a view, probably to be disputed here, that recovery from incontenence after prostatectomy (done by whatever method) is a lottery, depending on the complexity of the urethra join, the skill of the surgeon, the internal geography of the patient, maybe even pelvic floor strength, quantities of beer and coffee drunk and many, many other factors so generalisation is not really helpful. It seems necessary to judge each case individually to see what is best.

Sorry, rant over....

Tony

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

User

Posted 12 Jul 2017 at 20:08

James

I have had to regain my incontinence numerous times due to repeated bladder neck / stricture procedures and associated issues. The sheath system gave me the confidence to hang on a bit longer and in my case aided and speeded up my recovery.

Thanks Chris

User

Posted 16 Jul 2017 at 13:30

I am now 170 days post RARP. Somewhat obsessed by the issue/process of my continence, I have made a daily detailed record of what I eat and drink, when I eat and drink, the time of the last drink before bed and the number and time of each night-time pees including buying a scales to weigh the pads. All done for myself in an effort to try and understand and learn to try and manage and improve. I have come to some unremarkable conclusions. (Note: My personal situation was/is that I had pretty good control during the day from the start and I had total day-time control after about 3 months. I had little night-time control at the start and that has improved so that today (with one mid-night pee) I have the occasional 10ml-100ml night time disaster (once or twice a week).

I have learned/concluded that:

1. We are either all constructed in a slightly different way and when the operation was done the surgeon cut through vital nerves, he cut through more in some and less in others.

2. The pelvic floor exercises (PFE's) are a waste of time. Doing them makes no measurable difference. And obsessive as I am, I have never been sure exactly what/where they are so I obsessively exercised everything in my pelvis for months.

3. The problem is a problem of conscious and unconscious control. There is a sphincter muscle there that can stop the flow but it is weak but not just weak it has a preferred at rest preferred of 'open' (as opposed to the sphincter that was removed/disabled which had a preferred at rest position of 'closed' i.e. pre-op I had to make an effort to open it now I simply have to stop keeping it closed. Keeping it closed is easy to do whilst I am awake but difficult to do when I am asleep (the deeper the sleep the more difficult it is).

4. The 'alarm' process is now different. Previously my bladder would fill and when it got to a certain level of fullness I would feel that fullness and either act on that by going or ignoring it. Now the volume of urine never gets to that level in my bladder to feel 'full', long before then (at a volume previously of 150ml and now at 250ml/300ml) I feel pressure in my penis and I fight to hold back the flow. Over the months it has got better/easier but very little, very slowly.

4. The production of urine into my bladder is not a constant drip it comes in volume suddenly. So, for example, I can have a pee before going to bed and be full an hour later or 4 hours later. Why? it seems to be the time since my last drink. If I have a drink just before going to bed sometimes my bladder will be full within an hour and that its often the deepest hour of my sleep and that's when the disasters occur.

So what? I want to get to a position whereby the muscle will hold back the flow and wake me before releasing and that does happen most nights but sometimes the full feeling is not sufficient to wake me and the muscle is not strong enough to hold it back until I wake!

I have had no briefing/guidance/instruction/training from the NHS it's all been down to me trying to work it out.

User

Posted 17 Jul 2017 at 12:16

That comment moved me to register with this forum (I have occasionally lurked for about a year now) since it resonates somewhat with my own experience. It is now 15 months since my operation and I still leak variably, though I gather the majority are fully continent in about half a year.

In my case nights were resolved quickly, being totally dry after a couple of weeks and not needing pads (there have been just a couple of "accidents"). Daytime was different however and the decline in number of pads per day needed has been slow. It felt like a major breakthrough when I could first get by with just 2 pads and could confidently go out with just one spare in my back pocket. I am now mostly OK with one. I now don't usually experience "stress incontinence" when leakage is associated with actions that raise abdominal pressure such as lifting.

What I experience is rather similar to Nomad's point 4. When I start the day my bladder seems to work well, and able to retain a reasonable volume though not as much as when I went out for beers as a student. As the day wears on though the sphincter gets tired, and I can't hold as much just as described: there isn't enough for me to get a feeling of a full bladder so I am alerted by the sensation of a dribble. Some days the sphincter seems to hold on better than others, sometimes but not always in a way I can anticipate. Doing some gardening last Saturday for example, predictably resulted in significant later leakage,and I rationalise that by assuming the sphincter successfully resisted the pressure on it at the time but then got more tired for later in the day.

Thanks Nomad for describing this, which reassures me I am not alone in the experience. It doesn't seem to be a pattern of incontinence described in the leaflets about prostatectomy.

Speaking anatomically (something I am actually qualified to do) it does probably relate to the 2 sphincters in Nomad's second point. The pelvic floor sphincter that one can consciously contract is restricted to short periods of action, so it is good at adding extra tightness when there is a risk of stress incontinence but useless for closing the urethra for long periods. While you can identify the sphincter by stopping urination mid-stream no one can maintain that for more than seconds. Personally I still persist with the pelvic floor exercises, partly as an act of faith and also with the theoretical possibility that the body mechanisms for building up muscle that is used a lot would also help stimulate the nearby "unconscious" sphincter (the word used technically is involuntary).

In normal men (i.e. those still with a prostate) that sphincter is separate from the pelvic floor since the prostate lies between. It is not something the surgeon can identify in the operating theatre, and it varies in how much it lies in the bottom bit of the bladder and how much in the beginning of the urethra where it is surrounded by the top of the prostate. Thus the damage during surgery is very variable between patients. In Nomad's and my case I presume most of the sphincter was unfortunately removed, and we have a long wait for the little bit remaining to build up its bulk and strength.

In terms of factors to help, the hospital leaflet (and the excellent Prostate Cancer UK literature) warned of the effects of caffeine and alcohol. At some point I got fed up of always having to make special requests in social situations so I did an experiment. In my case I found normal tea causes no problem, making it easy to find something to order in a coffee shop. However if I want to drink coffee, if it isn't decaffeinated I suffer the consequences for about 24 hours. And if you ask for decaffeinated coffee in a restaurant there is no guarantee that is what they will serve, I quickly discovered it is safer to ask for tea! Alcohol deesn't cause me problems, at least for moderate amounts of beer or wine, though I have noticed an effect from larger quantities sometimes consumed at parties without keeping count.

Nomad's experience of changes in urine production probably depends when he eats. While you are digesting food the body keeps an awful lot of liquid in the intestines to help with the process, so that may only start moving to the bloodstream and on to the kidney and bladder two or three hours after the last meal. I don't know whether it might be possible to help things by varying mealtimes.

User

Posted 17 Jul 2017 at 21:02

A very interesting post, I'm so sorry that you are still having problems but my husband has a Supra pubic catheter as he is unable to pass water the usual way, though it does frequently drip and sometimes more (an accident) through the urethra. He has a Leg bag permanently and of course a night bag. Sometimes that night bag will fill to the brim over night (2litres) and others be half full. I've seen him empty his bag and it fill within 30 mins again, it seems random but I suspect that it's not as random as it appears. It's interesting to note the situation with the sphincters, this isn't something we knew about, though he hasn't had his prostate removed it has been blasted by radiation in a futile attempt to reduce its size and its intrusion into his bladder (caused far more problems than it solved). After much angst and a few operations to resite the ureters (badly damaged due to retention) he had to accept that things were not going to improve and he would have to put up with the supra pubic. It's not nice but I guess better than the alternative. He has been told to drink loads to keep the bladder flushed due to the infection risk of stagnant urine (nice eh?) and it does help. I know I'm not adding anything here to your post but I wanted to thank you as it does answer a few questions in our minds as to why the sphincter don't work anymore.

Good luck and I hope that improvements continue to be made over time, I can well imagine how disheartening this all is for you. I know how depressed John feels about it all, the fear of the smell, the bags, the ulcers from the straps, the pads and padded pants (our little granddaughter said, "Gaga you're too big to wear a nappy" when she spotted him getting dressed, fortunately we laughed about it, but what with his 38Cs (Gaga, you've got boobs like mummy has) it's all we can do! Thank goodness for the little ones and the joy they bring amidst all this life changing stuff.

I sincerely hope for improvement for you both, I know how debilitiaing this can be.

Devonmaid

User

Posted 19 Jul 2017 at 22:41

Thanks J-B and Devonmaid for your posts. It is clear from yours and other post on this forum that we are all in a different place for one reason or another (a surgeons skill?). I am able to see some positive progress with incontinence which is good but I see absolute zero progress towards any degree of erection. My heart goes out to you all.

User

Posted 27 Jul 2017 at 10:11

It seems logical that skill is involved in getting the best outcomes, and there is certainly research evidence that the hospitals with the best results are those doing lots of prostate operations so their surgeons are well experienced.

However there is also enormous variation between patients. When I asked my own surgeon about continence he told me of a recent patient who never needed pads, he was continent as soon as the catheter was removed. But that is unusual, apparently most men take 4-6 months to recover continence and for some like me recovery progresses slowly over (so far) numbers of months in the teens. The good news is that one study showed that for those not regaining continence quickly there are still continuing improvements for up to three years.

I suspect that the reason is that we are all slightly different in our construction, and those differences means that what is left after removing the prostate will function better or worse depending on the individual and thus require less or more recovery time.

Much the same is true of the nerves controlling erectile function. They are actually microscopically small and not visible to the surgeon. However it is known they usually travel next to small blood vessels which are visible. To "spare" the nerves, what the surgeon does therefore is preserve the thin outer layer of tissue on each side of the prostate which contains a visible small blood vessel. My guess is that in some people the most obvious small blood vessel isn't in fact the one with the nerve alongside, so the nerve gets damaged. (Mind you there is always some damage, that thin layer is bound to suffer from the process of being separated from the prostate underneath and there will be further variability in how well and fast it is able to recover).

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