I don’t want to write this post. Bowel problems (or bowel dysfunction) in MS is a tricky topic, even for a professional over-sharer like me. I’d rather keep this side of my story on the down-low, because acknowledging this much of my secret self to strangers on the internet is a risky proposition.
I’ve written lots about the impact of a neurogenic bladder; and yes, peeing your pants straight-up sucks, but in the language of my WASP’y grandmother, who refused to call anything like it is, my problem with number two is often my number one problem. Bowel dysfunction is an absolute horror, and for many, it’s the most distressing invisible symptom of MS.
Wait. WTF is Bowel Dysfunction?
When I posted this mini-rant on Insta a few weeks ago, I was stunned to see a handful of people with MS who had never heard of a neurogenic bowel and didn’t realize the problems they’d been having could be connected to their MS. What the hell, docs? Do better. If you have MS, there’s a good chance you may be prone to bowel problems like constipation, diarrhea, and the ultimate torment: incontinence. This is bowel dysfunction (BD), and it’s a kind of a BFD. MS can feel like having a bunch of different diseases or disabilities at once, and if you have MS-related bowel dysfunction you might as well add IBS (Irritable Bowel Syndrome – emphasis on the irritable) to your résumé.
No shit. Have I mentioned that I don’t want to write this post? When you write publicly you have to assume your worst enemy is reading. Well guess what Brenda, I poop my pants. Does that make you feel better? Of course it does, you troll. But I am nonetheless compelled to write about how MS can mess with bowels, because you need to know you’re not alone. You need to know there are things you can do. You really need to know that a neurogenic bowel is a common MS symptom that affects a whole hell of a lot of us. It’s miserable and overwhelming, and it can be very, very lonely.
We don’t talk about BD because of the stigma and humiliation that come with violating the social contract to put the poop in the proper poop place, that most of us have mastered by the age of 3. Humiliation is why we suffer in silence. Even if it makes you feel like you want to die, technically bowel dysfunction in MS isn’t going to kill you. Well, not directly. If you’re already a falls risk, running to the restroom when you can’t actually run can be a recipe for disaster. Everyone knows that constipation (fewer than 3 bowel movements a week) can be uncomfortable, but left unchecked, it can also lead to serious problems, like fecal impaction. Chronic constipation can cause back pain, and if you already have difficulty moving, constipation can make walking harder. And the less you move, the worse your constipation.
BD is an issue that needs addressing. Because after all, this is a medical problem. There are things that can help like increased water intake, dietary modifications, exercise—and, I’m getting pissy at myself just writing this, because I know first-hand that even though I drink the water, eat the greens, take probiotics and magnesium supplements, and follow a strict bowel routine, my careful planning and best practices fail anyway, and I’m forced to rely on the Hail Marys I learned in Catholic School.
Hail Mary, full of grace, please don’t let me black out from humiliation; but on second thought, please let me black out so I don’t have to endure this humiliation.
Not surprisingly, the Blessed Virgin has better things to concern herself with than my wounded dignity, and Jesus has been ignoring my texts. I’m not above seeing what kind of deal I could work out with Satan, but keeping me in misery is kind of Satan’s jam. Which means I’m on my own. And frankly, that’s how I want it. Let me hide in the bathroom for two hours in peace.
Of course, BD is more than a medical problem, it’s a social and emotional problem too; and, the consequences of bowel mishaps are arguably worse than the incontinence itself. If you have BD, your bowel is your body’s Supreme Leader, yielding absolute power, controlling every single thing you do (or don’t do), every single day. If Vanity Fair calls wanting me to do the Proustian questionnaire, my answer to What is your idea of perfect happiness will be: total confidence in my bowel. Otherwise, all I’m ever thinking is where’s the closest bathroom, and FML if it’s down a flight of stairs.
Managing a neurogenic bowel requires constant planning. There’s no room for spontaneity in my life. If you want to meet for coffee, I need 48 hours notice so that I can adjust my supplements accordingly. BD can be socially debilitating. There are a number of reasons why someone with a chronic illness like MS might call in sick or cancel plans at the last minute. You think we’re flaky, but it’s not easy to explain to uncomplicated poopers that you need to stay close to a bathroom. Even if you are in the circle of trust, we feel the low-key irritation of friends and family when they have to wait for our stars to align so that we can safely go out.
Dealing with the practicalities of managing BD, along with the emotional effects, when most of us simply don’t feel we can talk about it, can lead to depression and anxiety. The humiliation of public incontinence can lead to loss of social status. BD can threaten what we believe about ourselves. Of all the things attempting to erode our dignity with this disease, navigating bowel dysfunction in a culture where continence care is still the butt of too many jokes, requires Kanye-grade confidence to maintain self-esteem.
If you’ve been betrayed by your bowel once, you remember it in excruciating detail. When it happens on the regular, you figure out how to move on. My coping strategies involve treating myself with the love and care I would give a friend in a traumatic situation, and that almost always means presents. I feel proud of myself when I take my MS knocks in stride, and maybe I deserve a new lipstick for my trouble—a reward for how fucking hard this is. By giving myself a prize instead of wallowing in shame, I’m reminding myself of my worth. I’m acknowledging that I didn’t cause this, this isn’t my fault, and this has nothing to do with my character, or yours.
I’m not an outlier or the exception. In MS, this is it, this is normal. Shit happens. The world needs more compassion and open dialogue. Bowel dysfunction doesn’t just affect the MS community. Common conditions like Crohn’s, colitis, bowel cancer and others impact hundreds of thousands of people who are suffering silently; you almost certainly already know someone else who can relate.
I didn’t want to write this post, but there’s something cathartic about acknowledging the whole truth about what we go through with this disease. If you wanna talk shit in a safe space, I’m hosting a guided chat in the MS Healthline app on Tuesday, September 22nd at 4pm Eastern. Download the app here. Don’t leave me hanging.