You’re not alone: Living with MS bladder and bowel symptoms

Last updated Nov. 3, 2025, by Ben Hofmeister

 

This might just be the hardest thing I’ve ever written.

I’m perfectly willing and even enthusiastic — if that’s the right word — to talk about it, but I’m struggling with how to do it correctly. Then again, maybe there isn’t a right or wrong way to discuss the bladder and bowel issues I experience with multiple sclerosis (MS).

I’d better start at the beginning.

When my bladder and bowel problems began

I began having problems with incontinence at about the same time I experienced my first notable symptoms of MS.

While I wrote my other symptoms off to various ignored injuries, I dismissed problems with my bladder and bowel control simply because I was able to.

I was in the Army at the time, and teaching in between tours overseas. Because the majority of my time was spent outdoors with close friends and peers, stepping behind the nearest bush or even peeing semi-discreetly into an empty bottle was done without a second thought.

Urgency just doesn’t seem that urgent when those things are an option, and even the bowel issues I started experiencing were concerning, but not alarming — yet.

The moment I could no longer ignore it

It became alarming shortly after I was diagnosed with MS. At that point, my physical disabilities were getting too bad to ignore, or even hide completely from others and myself.

It was around this time that I began having accidents, and I learned that while a bladder accident is embarrassing and inconvenient, a bowel one is absolutely devastating.

In the coming years, as we toilet-trained our own children, it would almost depress me to the point of tears to realize that as they were gaining control of their bodies, I was losing control of mine. As they were coming out of diapers, I was in danger of having to use them again, and I felt nothing but shame.

Adjusting to life with MS bladder and bowel symptoms

Sometimes it can feel as though my entire life revolves around my bladder and bowels.

I keep a portable urinal at my bedside, in the living room, and in the car, but still have to hope that I can get to one in time and have the manual dexterity to use it. I also have to use a special chair for the toilet, and it goes with me on any trips outside my home that last longer than 12 hours.

I’m reluctant to refer to using a portable urinal, or the way I managed my early symptoms, as a privilege, but in a way, they are. Neither is an option for the majority of people with MS.

Gaining perspective

Many of the things I took for granted when I began noticing these symptoms would have been much more difficult for almost anyone else.

When I was first examined at the Department of Veterans Affairs Hospital before receiving a disability rating from them, my examiner asked if I was having any bladder or bowel trouble. I said that I was, but I could handle it because my friends and coworkers wouldn’t really care if I went in the trash can in front of them.

She paused for a second and then reminded me that while this was great for me, it was a very unusual situation and would be a career ender for most people in the military, especially women.

I’ve never forgotten that moment — when someone gently but firmly put things in perspective for me.

How I manage these challenges daily

My 12th anniversary of being diagnosed is coming up soon, and I’m still not sure that I’m managing this much better than I was.

I feel less shame because there have been plenty of brave people on my journey who have let me know that I’m not alone. But I still have accidents. I think I can safely say I feel better about my ability to detect when it’s time to go, but only marginally. That feeling is probably because I now treat every sensation that tells me it’s time to empty my bladder or colon as an emergency.

I have to, because “urgency” doesn’t really seem like the right word anymore, and thinking of my situation as an emergency has helped. I like to think of the various nervous system sensors for my bladder and bowels as doorbells.

Sometimes I hear (feel) the doorbell and rush to open it for whichever of my guests is waiting on the porch. All too often, the guests don’t wait to ring the bell as they come through the door. That’s when urgent becomes emergent and then turns into an accident.

Accepting, not embracing

I manage these symptoms by staying prepared and accepting what comes.

Just like with all the things that MS has brought into my life, I refuse to embrace this, but I do accept that I have issues and that an accident can happen at any moment.

There is no requirement to be proud, or even like it, but accepting these symptoms of MS as exactly that — symptoms — makes them much less devastating.

Preparing for the unexpected

Being prepared can be as simple as keeping the necessary accessories close to hand and wearing pants that are easy to access.

It can also include watching what I eat. There are certain foods — curry, for example — that I have always enjoyed, but with the knowledge that I would probably run to the bathroom not long after eating them.

Running to the bathroom is no longer an option for me, so I have to either avoid certain things or plan for the aftermath, including an accident.

You are not alone

It’s been estimated that bladder and bowel problems affect more than 50% of people with MS. You would think we would talk about it openly, but we don’t. And while I have complained about that very thing in the past, just writing this has been difficult for me, so I think I understand a little better now.

Maybe more than any other symptom, including sexual dysfunction, this one is personal, embarrassing, and very, very hard to put into words. That said, it is important that we at least acknowledge it, even if we don’t unabashedly discuss it.

At the beginning of my journey with MS, it wasn’t someone’s personal story or tips and tricks to manage incontinence that I was looking for. I just wanted to know that I wasn’t the only one dealing with it, and now, all this time later, that’s exactly what I want to pass on.

You are not alone.

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