MS and Incontinence

John Connor avatar

by John Connor |

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Another of those things I was never warned about.

Maybe if I’d been assigned a local MS nurse at the beginning of my diagnosis, then eruptions out of my pants could have been averted instead of finding out the wet way.

I only discovered my local MS nurse when she sat down next to me at my area MS AGM over a fish-and-chip lunch. It then took many months to get onto her books, including seeing a very nice neurologist instead of her, and having to start all over again. Now, my proven skill set is organization and ornery persistence, so yes, eventually everything was sorted. Being ill slowed me down, but it didn’t stop me. But that certainly isn’t true for everybody.

It turned out that this was extremely normal. My MS nurse, who’s just retired, discovered a whole slew of patients who hadn’t been seen by any medical representative for years.

The car proved to be my bête noire.

As I was driving on a motorway in France, this was particularly apt. Like a dam breaking, I flooded the car — it had nothing to do with the engine. My son, who then was on the verge of being a teenager, was horrified. Luckily we were near services. I parked well away from everyone else and cleared up.

At this point, it was taking me forever to urinate. I had no idea my body was breaking down in this way.

Eventually, this problem was solved (see “My Wee Crisis,” Part 1 and Part 2).

Now, it gets really uncomfortable.

Back in London, I’m not sure how much later, I’d just paid for petrol when an uncontrollable urge to defecate hit me. I asked if there was a toilet and told not for customers. Now MS-aware, I realize I could have pointed out my illness. It may have gotten me nowhere, but I could have tried. Instead, I shat myself, waddled back to the car, and drove home, somehow. It was a long hour.

It’s not something that I’ve ever broached with a neurologist or an MS nurse, but maybe I should have. But in this case, it feels like something I should just manage. It’s intermittent. Sometimes, if I’m not walking well, it just takes me too long to get to a toilet. Others, my bottom turns into Vesuvius.

The lesson has been learned.

I never go out without wearing an adult nappy. If things are particularly difficult, I’ve even learned to wear two. Sometimes, though, even that doesn’t suffice.

Today, I’m wearing one. Things have been fine as of late.

Complacent — moi?


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Kristin Hardy avatar

Kristin Hardy

Hi John, sorry to hear about your travails. It's the dirty little secret of MS – pun fully intended. I had the issue on a daily or near daily basis for several years but have discovered techniques to improve matters.
First, get on a schedule. Putting something in your stomach, even swallowing pills, can trigger peristaltic waves. Make this work in your favor. As soon as I get up in the morning, I take fiber capsules. I also make sure that I eat breakfast as early as possible – within an hour or two of getting out of bed. Eating early puts roughage in my innards (I am on the Wahls Protocol, so for me, breakfast is usually greens, protein, and roasted vegetables of some sort). Having the fiber capsules right up front gets the party started, so to speak – sometime between then and when I leave the bathroom/bedroom area, I have what we refer to my house as quality time. I don't necessarily have more control but I am in the right place at the right time. If things aren't happening rapidly enough, try making a fist and kneading the right-hand side of your abdomen in a downward direction – it also seems to trigger peristaltic waves and get things on the move.
Take care of your gut. I find that avoiding gluten, dairy, and sugar has helped reduce the looseness that used to make control difficult. Taking oxybutynin for bladder spasms also helps with this issue.[
Finally, Imodium or similar is your friend. If you need to leave the house before you have conducted business, so to speak, a judicious nibble of Imodium can buy you time. Don't necessarily take a full tablet – that can get you so far off schedule that you have no idea when things will hit – but a quarter of a tablet will slow things down enough that you can get where you need to go.
Anyway, good luck with it MS sucks but there are ways to improve it. Hang in there.

Frank avatar


It's just nice to know that I'm not alone .

Beth avatar


For the bladder problem I have an oxybutynin patch and botox injections once a year. Sometimes I take betmiga as well. Get a good urologist. It has made a huge difference to me.


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