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What Crohn's Disease Feels Like
The other day, a friend asked me a seemingly simple question: “I know what Crohn’s disease is,” she said, “but what does it actually feel like?”
So first, let’s get the disclaimer out of the way: I’m Ali. I was diagnosed with Crohn’s disease when I was 7 years old and have lived with it in varying states. Sometimes it’s totally in remission, and other times it knocks me out of the game entirely. I am in no way here to give you medical advice or to convince you that what I’m doing is the right way to live with Crohn’s. I’m just here to talk about my personal experiences in a very conversational, non-expert way. Any medical questions should be directed to your doctor, not me. I can, however, answer questions about where to find every single bathroom in Central Park or which items have recently made the transition from Lululemon’s full price section to its discounted (but final sale!) “We Made Too Much” arena. Cool? Cool.
Crohn’s disease is a chronic illness that, for me, comes and goes, often without warning. My disease seems to be less regulated by what I eat or drink and more dictated by my emotional well-being. (Case in point: Every time I experience a flare, it’s when I’m going through a major life change, such as when I went off to college, when I studied abroad, when I got my first post-college job, when I was later promoted in a big way at that job, and when I was wedding planning.) Stress is a major trigger for me. (So you would think I’d be an expert at managing my stress by now, right? Not quite. But I’m always working on it.)
When I’m not experiencing a flare, I still have Crohn’s, but it’s mostly dormant. On a “normal” day, though, my stomach is still over-active. I still have to spend a lot of time in the bathroom in the morning particularly, and I still find myself likely to make bathroom stops while running. (High impact activities = stomach jostling = bathroom immediately, please.) I generally feel well, but my normal isn’t quite normal. I’m not generally in pain or discomfort, but I do spend more time in the bathroom than most people.
But when I’m flaring, that all goes right down the toilet. (Confession: I actually hate poop and bathroom jokes. I find that a lot of Crohn’s kids love them and use them all the time, and I generally loathe them. I’ve also never once used the poop emoji, because I hate that, too.)
A flare, for me, comes out of nowhere. Let’s take this most recent flare, for example.
I was marathon training, working, and going through life just fine. My training was going great, and I was feeling strong and happy.
Then, Brian, Ellie, and I went up to New Hampshire to stay with my family for a few days. I was supposed to do a track workout, and I couldn’t even make it to the track. Thank goodness I was in New Hampshire where there are plenty of wooded areas, because I had to use them multiple times. I knew immediately that a flare was pending. My parents and Brian were all, “Maybe it’s just something you ate,” but I knew.
By the next day, it was clear: I was in the bathroom constantly, I was too uncomfortable to run, and what was happening in the bathroom made things very evident. When I’m flaring, I’m not just going #2 a lot — when I go to the bathroom, it’s mostly blood. So when I say I go to the bathroom dozens of times a day — and yes, that number is accurate — I’m mostly running to the bathroom to sit on the toilet and, well, bleed from a place no one wants to bleed from. It’s painful and, no surprise here, pretty gross.
The bathroom trips are also incredibly urgent. It’s not like, “I’ll go for a run and there’s a bathroom a few miles down the road, so if I need one, I’ll use that one when I get there.” Instead, my stomach goes from OK to “I need a bathroom right this second,” with zero warning. That’s why, when I’m at J.Crew trying to shop like a normal human, I can’t just stroll down the mall to eventually work my way to the back of Bloomingdale’s to use the Ladies’ Lounge there. I need a bathroom now, or I will have a very unfortunate accident. It’s embarrassing and mortifying having to beg someone to let you use their bathroom.
Which brings me to my next point, which is that Crohn’s is, for the most part, an invisible illness. In one sense, that’s nice! On days I want to power through a flare in an attempt to feel normal, no one looks at me like I’m the sick kid!
But it can also provide a large burden. When we were waiting to go through customs at the airport on the way back from Paris, we were probably 80th in a line that was moving so. slowly. I’d scoped the bathroom situation, so I knew there were restrooms kind of close, and that I could probably make it to one if I needed. But I was so tense and uncomfortable the whole time we were waiting. To my left, there were two people in wheelchairs, who went straight to the front of the line.
And I was so jealous of those two people.
An f-ed up way to feel, I know. But I looked at them and I longed for my disease to be visible. I wanted to have a cast on my leg, I wanted to have crutches, or I wanted to have any kind of physical setback so people wouldn’t question me when I had to cut the line, whether at customs or in the very long bathroom lines at the Louvre. It’s one thing to run to the front of the line and say, “I’m nine months pregnant — see? — do you mind if I scoot in front of you?” But most people haven’t heard of Crohn’s disease, so the few times I’ve actually really needed to cut a line, I’ve had to explain my disease and why it’s an emergency, and beg them to take pity on me. (Like that time in J.Crew when I was reduced to actual tears in the middle of the store, begging to be let into the employee restroom.)
I’m of course in no way saying that people with visible physical disabilities have it “easier” or that they’re always treated as they should be. I’ve ridden public transportation enough in NYC to know that no one has it easy in this world! But sometimes I wish I had a sign or something that said, “I’m sick, even though I don’t look it. Please be nice.”
As for how Crohn’s actually physically feels…
The way I always describe the feelings of a flare are to imagine a hand mixer — like the KitchenAid or Cuisinart kind you register for when you’re getting married and plan to bake cookies or mashed potatoes in the future — and imagine it being on a low speed…inside your stomach, at all times.
That’s how I generally feel during a flare. I’m not always in pain. But I am almost always uncomfortable, as if there’s a constant churning or unsettling going on in my abdomen.
Then, that churning will, without warning, of course, go from first speed to top speed. When that happens, I have to make a high-speed run for the bathroom. Once I’m in the bathroom, I generally get a bit of relief, at least for a little while. Some of the pressure goes away, at least until the next time the hand mixer really wants to mix things quick.
During a flare, there’s also more than just the stomach stuff. That’s what hits me the hardest and affects my lifestyle the most, but there are also fevers, night sweats, joint pain, hair loss (coming in hot with this flare — it’s falling out by the handful every time I shower), anemia, exhaustion, and a host of emotional factors, too.
The unpredictability and uncertainty surrounding this disease are the most draining factors for me. Yes, the physical stuff completely sucks. But the emotional toll it takes is massive. Crohn’s disease can be incredibly isolating and lonely, so if you know someone who has it, just try to be extra nice and maybe a little sensitive. Sometimes we feel totally fine, and other times we collapse into a puddle of hysterical tears. Sometimes we can sit on the couch with you and chat for hours, feeling totally fine — probably because we’re in the comfort of our homes and can chill out knowing the bathroom is just around the kitchen — and other times we go weeks without sleeping because we’re running back and forth to the toilet all night.
I hope this explanation — personal as it may be — is a little helpful. Crohn’s disease affects people so differently. There’s no, “This is a stress fracture, so rest for eight weeks and you’ll be good to go.” It’s a little less definitive, a lot less certain, and, in many cases, pretty uncontrollable.
So that’s what Crohn’s disease feels like for me. A hand mixer in my belly and a dark cloud over my head.