Note: This is not medical advice. If MS is causing IBS or other gastrointestinal symptoms, talk to your doctor.
You know that puffy, painful feeling you get after a massive holiday meal? The one where your stomach is stretched to the max and you vow never to eat again; but then your mom brings out the pumpkin pie and you convince yourself a “dessert tummy” is a real thing?
As North Americans, we’re not exactly known for restraint when it comes to food–overindulging is practically part of our value system. Pretty sure it’s treason if you don’t polish off at least two heaping plates at Thanksgiving, and you clearly don’t love your family or baby Jesus Himself if you’re not eating your way through December.
No judgement here. Food is amazing. From raspberry macarons in a Parisian champagne bar to the biggest, best curbside panini in Florence, to a cricket-topped guac in Mexico City, most of my best memories are attached to great meals. Food doesn’t just keep us alive, it gives us a reason to live.
While the occasional overindulgence is normal and definitely worth it (because your dad only makes turkey stuffing twice a year), what’s not a good deal is feeling like a human circle after a kale salad or a saltless mug of bone broth.
Guys. My tummy hurts.
It’s baseline for me to completely bypass the satisfied feeling of a belly full of sustenance and go straight to over the belt bloating and stabby pains almost every time I eat. Except I never wear belts and overwhelmingly prefer empire waistlines. The fashionista in me doesn’t believe that “sack” and “dress” should ever be uttered in the same sentence. But when my stomach’s in charge, it refuses to be contained.
My stomach is almost always in charge.
If you have MS like I do, debilitating tummy troubles might be on your list of reasons why this disease is the freaking worst.
My abdominal distress can make it difficult to sleep, exercise, and concentrate. Chronic discomfort makes me say mean things and think meaner thoughts. Socially, I’m either feeling like a party pooper or eating through pain just to be polite.
I’ve been complaining about early satiety, stomach aches, and bloating for years. I’ve seen naturopaths and a gastroenterologist. I’ve experimented with elimination diets. I’ve gone gluten free and tried Whole30. I never ever eat legumes and I rarely eat processed food. Thanks to my Fitbit I can tell you every single thing I’ve consumed since 2017 and there is no rhyme or reason to what causes my digestive system to wig out.
Bowel dysfunction is a widely recognized MS symptom. It’s easy to pin constipation and incontinence on MS. The bowel will not be ignored. But do not underestimate the power of MS to mess with your everything. From dysphagia to diarrhea, MS can cause gastrointestinal symptoms at all stages of the digestive process.
Anyone who lives with anything undiagnosed and under-treated knows that the pursuit of answers can wear you down. I can only use so much energy trying to fix any one of the 247 problems MS causes at any one time. At intervals, I calm down, reassured that I probably don’t have cholera or a tapeworm. Probably. I languish in a state that more or less accepts that like so many MS symptoms, stomach issues are something I have to live with.
But when symptoms inevitably flare again, I re-enter the soul-crushing cycle of searching for solutions. My most recent plea to a new gastroenterologist left me feeling frustrated after I was told my symptoms don’t align with colon cancer, but that he would order a colonoscopy anyway, as well as an anorectal manometry for some reason.
The prep for both these tests is brutal for anyone with a neurogenic bowel. If you’re wondering wtf anorectal manometry is, lucky you. I’m not a doctor, so I can’t claim that an anorectal manometry is more than a bit extra for most of us, but this probe feels like a pretty extreme attempt to prove what we already know about MS.
While I’m tempted to make my gastroenterologist the villain of my gastronintestinal whodunnit, I recognize that this guy was just offering me the tools that are available to him.
One of the most important Q’s empowered patients need to ask is: Is this test/procedure/treatment really necessary?
When I expressed my concerns, my GI shrugged and told me I didn’t have to do the exams if I didn’t want to. When I asked if there was anything else he could offer me, he told me to take Metamucil. (Okay, maybe he is the villain.)
Clearly, I’m on my own here. Feeling like doctors have given up on my gut, I went back to a place that never lets me down: the internet. Here’s what I learned:
The Canadian Society of Intestinal Research validates that MS can cause GI symptoms that go beyond bowel dysfunction and draws a straight line between MS and dyspepsia. Dyspepsia sounds serious and I wonder if that’s what’s ruining my appetite. But when I read further I realize dyspepsia is just a fancy word for indigestion. Indigestion is what your alcoholic grandfather has because all he consumes are Hot Rods and Labatt 50. I refuse to accept that what I’m dealing with can be as simple as indigestion. Do not come at me with a ‘drink-more-water-avoid-carbonated-beverages- chew-your-food-and-eat-fucking-slowly’ solution. I have obviously tried these things.
Like dyspepsia, IBS feels like a vague non-diagnosis; the thing they call the thing that they don’t know what the thing is. IBS feels like it goes with the word “just”. As in, “relax, it’s not cancer, it’s just IBS.” And, again, I say How dare you? I am suffering here. Irritable is what I become when I order brunch and my eggs arrive over-poached. Talk to me when you change the name to Homicidal Bowel Syndrome and I might reconsider HBS as a valid possibility.
Gastroparesis is a condition that impacts the stomach’s ability to move food to the small intestine in a timely manner, and the more I learn about it, the more I start to believe that this is what’s happening with me. My arms, legs, and even my eyes are slow and uncoordinated. Not to mention my bowel and bladder. I also have a touch of dysphagia, which throws my swallowing out of whack. When everything around and connected to my stomach struggles to work together, it makes sense to me that my stomach would also be phoning it in. And nobody’s answering.
My physiatrist agreed to send me for a gastric emptying study. Sidebar: I will post about physiatry later; and no, I’m not mis-spelling psychiatry. If you can get yourself a physiatrist do so. Physiatrists are the best people alive.
Unlike prepping for a colonoscopy or an anorectal manometry (I swear that’s the last time I will type that vile word), the prep for a gastric emptying study was not the worst. The hardest part was the need to skip my bowel meds (magnesium hydroxide, and psyllium, aka Metafuckingmucil) for 48 hours beforehand. And sure, this sounds like NBD, but if a butterfly flaps its omnipotent wings in Timbuktu, the delicate balance of my precious bowel routine will be thrown completely off course. It will take me at least a week to get back on track.
The day of the test I arrived at the hospital at 8am to eat a radioactive cheese sandwich. Then, at regular intervals, I slid into a scanner so a tech could take pics to see how far my breakfast had traveled.
I was told I could leave after my 10:30 photoshoot if the sammy had traveled far enough. When I wasn’t released until 12.30–the maximum length of the test, no matter how far that sandwich had journeyed, I felt vindicated–certain that my advanced patient-knowledge and self-advocacy had led me to the solution to my problem. No matter that the tech, who for legal and bureaucratic reasons was not allowed to give me any actual intel, cautioned me not to interpret my own results.
As I waited for my test results I started looking into gastroparesis diets. Fruits and vegetables are the foundation of my current diet but can be problematic for GP patients. Would my gastronomic future be limited to boiled chicken and baked potatoes? What would Terry say? Of course, the good news here is bagels, because unless you have celiac disease, the GP diet gives two thumbs up to bread. Still, it felt a bit sketchy because no diet ever recommends bread.
I got my test results by email later the same day. You guys already know what happened. In the frustrating double-edged gut-wrenching reality of the chronically ill, my test results were normal. Of course they were.
I would eat crow if I thought it would help.
I can’t help but wonder if the test had been done later in the day, there might have been a different result. My legs perform dramatically differently at 8 am than they do at quitting time, so why wouldn’t my stomach? Nevertheless, I’m willing to reconsider that IBS is more complex than I give it credit for and that maybe that’s exactly what’s going on. The most compelling evidence of the potential of “just IBS” is that despite feeling like my own death is imminent, I’ve been suffering for literal years and I’m not actually dead.
I went back to the Canadian gastro site looking for IBS life hacks and found this gem:
“Over time, with understanding and faithful adherence to an individualized treatment plan, many patients with irritable bowel syndrome can look forward to a notable improvement in their condition. In fact, statistics show that approximately 10% of IBS patients get better each year.”
Excuse me? 10%? TEN PERCENT???
Back to the naturopath I go for more tests and guidance. Spending more of my money and time and mental and emotional real estate just trying to feel okay.
In the meantime, if anyone knows where I can get a fecal transplant (is that a thing yet?), lemme know. I will try anything.