Crohn's Disease: It's Not All About the Bathroomby Lilly Stairs Patient Advocate
Running to the bathroom: It’s the symptom most people think of when they hear Crohn’s disease. And who can blame them? They don’t know any better because over the years, national awareness campaigns have focused on featuring inflammatory bowel disease (IBD) patients stuck behind bathroom stall doors.
But there is a subset of Crohn’s disease patients, myself included, who have never experienced this symptom. My IBD presented in my small intestine, sometimes called “small bowel Crohn’s.” Not once since my diagnosis have I ever felt the need to run the bathroom, and not having this symptom has resulted in a series of unique experiences for me as an IBD patient.
At the age of 7, I was diagnosed with psoriasis. At the age of 19, after exhibiting total body arthritis in every single joint so severe that I could barely move, I was diagnosed with psoriatic arthritis.
But my family and I were never quite comfortable with this psoriatic arthritis diagnosis. According to the Arthritis Foundation, psoriatic arthritis traditionally only presents with joint pain in the ankles, knees, fingers, and toes — but mine was everywhere. We pursued second and third opinions in Boston, the epicenter of medicine, and all confirmed a psoriatic arthritis diagnosis. Still, we were skeptical.
Six months after this diagnosis, I was sent in and out of the ER three times over the course of one weekend with stomach pain so severe I couldn’t swallow water without writhing in agony.
The staff was convinced that I was faking it. That it was either all in my head or that I was just looking for access to heavy duty pain meds. But after my third trip into the ER, I was finally admitted. It took a week of testing, but a capsule endoscopy revealed bleeding ulcers in my small intestine.
It was at this point that I finally had an answer, a diagnosis that made sense to me: Crohn’s disease.
I will never forget one of the rheumatologists who treated me walking into my hospital room and saying how shocked she was. Because I had never complained of diarrhea, Crohn’s disease never crossed her mind.
Here’s where it gets interesting: Truthfully, the doctors don’t officially know if I have Crohn’s disease, psoriasis, and psoriatic arthritis, or just Crohn’s disease and psoriasis. This is because joint pain can be a symptom of both psoriatic arthritis and Crohn’s disease. But the fact that I have Crohn’s affecting my small intestine is clear.
And yet, because everyone, doctors included, are trained to recognize Crohn’s disease with running to the bathroom as a hallmark symptom, those who present differently may experience a long, rocky road to proper diagnosis.
My patient identity crisis
Naturally, upon diagnosis, I went straight to Google. As I began to read the stories of fellow Crohn’s patients and scour advocacy organization websites, I felt like an outsider.
From tips to prevent “accidents” to poop emojis everywhere I looked, most of the content seemed completely irrelevant to me, and I suddenly felt even more alone. Why wasn’t anyone talking about the experiences I was going through? Was I the only one?
Finding my tribe
Upon tweaking my Google search and typing in the trifecta of diseases I live with, I came across the autoimmune disease community — a group of individuals living with chronic illnesses, many of them with multiple diagnoses, and talking about their shared experiences. I finally felt less alone, like I belonged.
Primarily through Twitter, I connected with patients from across the autoimmune spectrum, some with my chronic illnesses, some with diseases I had never heard of. But there was and is an inherent understanding among all of us about the shared experiences we are all enduring, and that has made all the difference.
A call to action
Through my advocacy work over the years, I have had the opportunity to connect with many incredible IBD patients. While several of them do experience the “classic” symptoms of Crohn’s disease, they also feel frustration when IBD is exclusively viewed as a bathroom disease. Don’t get me wrong — the mental and physical toll this aspect of the disease takes on a person is devastating. But when we joke about IBD as a bathroom disease, it has the potential to trivialize it. Crohn’s disease extends far beyond the bathroom to surgeries, lost time with family and friends, paralyzing joint pain, crippling fatigue... the list goes on.
I challenge all of us to continue talking about IBD beyond the stall to raise awareness about the all-encompassing way this chronic illness impacts our lives and help elicit a greater understanding among the general public and medical community. As is the case with many chronic conditions, living with Crohn’s a different experience for everyone — and it’s important to remember that.