Mind Games, Voiding… and Over-sharing

As I mentioned in an earlier post (Random Unsolicited Advice for the Newly Diagnosed) the fact that many of us will suffer bladder and bowel issues is one of the cruellest jokes MS can play, especially when you consider that many people are diagnosed in their 20s and 30s.

But really, there’s never a good age to find yourself logging the location of every toilet on your route.

The MS Trust explains that “In MS, damage to areas of the spinal cord or brain that control the bladder can cause different types of problems:

  • urgency – a desperate urge to go to the toilet with little or no warning
  • frequency – needing the toilet more than eight times a day
  • hesitancy – difficulty in emptying the bladder
  • retention – a feeling of incomplete bladder emptying”

With this in mind, here are some more top tips!

PLEASE NOTE:
I am NOT
a medical person. My only qualification for writing this is the fact that I have had – and continue to have – some (if not all) of those problems

What follows is based on my own experiences and a series of embarrassing half-remembered conversations with specialists and professionals. If you’re having these issues, you are advised to go and have some of your own.

WALK DON’T RUN
The best piece of advice I had from a Urologist was not to run to the toilet. Apparently running does something to weaken your pelvic floor. I find that if I get the urge, it helps if I walk in a really exaggeratedly slow manner. Plus it looks cooler than running to the loo whilst clutching your unmentionables.

KEEP YOUR FLUIDS UP
When you start thinking about bladder issues, you might think that the obvious thing to do would be to simply reduce your fluid intake. Hilariously, this can lead to an increased feeling of urgency. Thanks for that!

Best thing is to keep your fluids up but think about what goes in. Alcohol and caffeine (i.e. the fun stuff) are obviously both irritants – caffeine is found in some fruit juices, especially orange juice. Cranberry juice is really good and water… well, there’s basically nothing in water to irritate your bladder. so I try to drink as much of that as I can (when I’m at work, when I know exactly where the toilets are)

MIND GAMES
As I mentioned BEFORE, if I’m walking or driving and I get the urge, I’ll start counting backwards from 400 in 3s. I read this technique in a magazine article about tips to help you sleep. The theory is that – as opposed to counting sheep – this is just repetitive enough to send you to sleep without being totally mundane. It never worked for me as far as getting to sleep’s concerned, but it does the job if I need to keep “the wolf from the door”.

I mentioned this to my Urologist when I was going through a bladder retraining programme a couple of years ago, and she saw lot of sense in it. Any distraction is good.

KNOW YOUR ENEMY
Basically the bladder is a pretty stupid muscle, with an incredibly short memory. If you go to the toilet when your bladder is (say) 20% full or less, then next time you’re at 20% it will remember and will send messages up top.

So the thing that all parents say to their kids when leaving the house (“have you BEEN? Go on, have a try…”) is pretty much the worst thing you can say.

But we all say it – and if you have MS, you’re probably guilty of having the odd “try” yourself.

I dont have an answer for that, but a bladder retraining programme gave me some ideas. It’s UNDENIABLY WEIRD but I spent three weekends measuring my fluids – incoming and outgoing.

Yes, gross – but because I knew how much had flowed in each direction, it gave me confidence to tell my misfiring mental messages that, actually, I KNEW that there was nothing in there.

DO IT AGAIN
But one last trick my urologist taught me is the delightfully named Double Voiding. This helps to avoid retention – basically, you go to the toilet (and this only works in a cubicle!) then you get up, maybe walk around a little bit, then you sit down and have another go. I’m not that sure about the biology but this really does help – I know I’ve had occasions where I’ve been convinced that I was empty, only to get THE URGE almost immediately. Double Voiding – on top of everything else – really helps me.

Another epically long post, but I thought this one was important enough to warrant it – If you have Bladder issues, what helps you manage them?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (3)
  • Laura Kolaczkowski
    5 years ago

    Funny how once we start living with MS and all it’s fun side effects, we throw common civility in conversation out the window and discuss all sorts of things in these public forums. When my neurologist was first looking at me for MS and he asked me about incontinence, of course I said no, I had no problem. I had no idea what that had to do with MS anyway. The next day I got in touch and confessed that I had hedged his question and indeed I do have that problem. Ever since thenm, i figure anything is fair game in talking with him and the rest of the world. Thanks for joining me in the caring and sharing department.

    And please do let us know how that TENS works for you.
    ~Laura

  • Steve Woodward author
    5 years ago

    ha! i’ve been on my best behaviour ever since, so the TENS machine remains a distant threat!

  • Steve Woodward author
    5 years ago

    Here’s a ‘bonus track’ – this post was already way too long but I wanted to include this, which I previously added to my own blog shortly after the following conversation happened.

    It was at the hospital with the Urologist I was seeing following a review of my latest void chart. The following is pretty much verbatim:

    Nurse – You’ve basically got three options now. One: you can keep doing what you’re doing now, trying to go a little bit longer when the initial urge hits, in order to try and make the volumes increase when you do ‘go’.

    Steve – OK. So that’s the ‘less easy’ option…

    Nurse – Two: there are drugs which you can take that can support the bladder retraining process. I know you’re taking Oxybutynin…

    Steve – Actually I stopped taking that a few months ago. One day I just forgot and I decided to keep going. Anyway, with my Rebif and Gabapentin, I tend to think that I take enough drugs. So if I can avoid taking MORE that might be best.

    Nurse – OK, well that’s fine. There is a third option. Have you ever heard of a TENS machine?

    Steve – Oh yeah, my wife had one for use during the early stages of labour.

    (As an aside, I remember thinking at the time that a machine which gave me short bursts of electricity was some kind of IDEA OF HELL – I have enough trouble with pins and needles and spasms. But anyway…)

    Nurse – So you know what they are and this works in just the same way. You have to use it for so many minutes a day, ideally for the same time-period each day. And in collaboration with all the other things you’re doing, it can have a positive effect on bladder control…

    Steve – Well, that sounds pretty interesting…

    Nurse – However, you don’t wear the machine in the same way your wife did. Because it needs to affect your bladder, the electrical current is transmitted via a large probe which you insert into your back passage…

    [epically-long pause, possibly the longest ever]

    Steve – Oh… So tell me about the first option again?

    It gave my wife quite a laugh when I told her about this option. And she said that she might give the nurse a call the next time we have a falling-out:

    “Actually, Steve has been thinking and he would like to try the anal probe… no, he can’t get to the phone right now… no, just send it for my attention…”

    I hope my rampant oversharing has spread a little sunshine in your day too!

  • Poll