Crohn’s disease can cause symptoms unrelated to your digestion. Health’s Crohn’s Disease Advocate Gaylyn Henderson, MPH, describes the early symptoms of Crohn’s disease she had—and none of them were related to her digestion.
When people think of Crohn’s disease, they often think of digestive issues like stomach pain, nausea, and diarrhea.
But here’s the thing: Crohn’s disease is not limited to the digestive tract. Crohn’s disease is an autoimmune disease that can impact the entire body. Autoimmune diseases cause your body to mistakenly attack itself, leading to inflammation. The inflammation can affect parts of the body outside the intestinal tract.
When Crohn’s disease causes symptoms in areas of the body outside of the digestive tract, the symptoms are referred to as extraintestinal manifestations (EIMs).
EIMs can affect almost any organ in the body, including the musculoskeletal system (bones, muscles, and joints), skin, and eyes. Sometimes, EIMs can be the first clue that something is wrong in your digestive tract. You may have EIMs of Crohn’s disease well before a Crohn’s disease diagnosis is made. Knowing the potential EIMs of Crohn’s disease may help you get the care you need sooner.
Looking back on my Crohn’s disease journey, I think there were signs and symptoms that could have led to an earlier diagnosis had I been aware of the disease’s extraintestinal manifestations.
I knew something was wrong when I saw blood in my stool at age 14. It was an automatic red flag that I should go to a healthcare provider. After a few visits and tests, I was diagnosed with Crohn’s disease. However, I believe I began having issues or symptoms that signaled something was wrong at least a year earlier. I just didn’t know at the time that the symptoms may have been due to a yet-to-be-diagnosed digestive disorder.
I remember 8th grade significantly because I had a huge rash on the crease of my left arm. It was itchy, red, and inflamed. At times, I wore a large bandage to cover it. The rash looked contagious, but it wasn’t. I had the rash for almost a year. I still have a scar that is quite visible today.
I developed this rash about a year before my Crohn’s diagnosis. I went to several doctors, but nobody had a cure or solution for the rash. As I know today, the rash was an immune response to inflammation. It was an EIM of my yet-to-be-diagnosed Crohn’s disease. Had I known that a rash could be a sign of a chronic (long-term) condition, maybe I would have sought treatment sooner. Maybe my family or I would have asked my doctors to run different tests.
As a child, I had terrible allergies. Growing up in the South with pollen and ragweed didn’t make matters any better. Every spring, summer, and fall, like clockwork, my allergies would kick in—so basically, I had allergies almost all year.
One of my most notable symptoms was swollen, itchy, red eyes. When I’d wake up, sometimes my eyes would feel glued shut. The only thing that relieved the pain was a cold compress on my eyes.
I always thought it was allergies because of all the pollen I lived near and because it seemed like everything made my eyes get itchy, red, and inflamed.
However, when I got older, I learned that my eye issues hadn’t been entirely from allergies after all. After graduate school, I moved to Washington, D.C., where I started seeing a new gastroenterologist (a doctor specialized in digestive disorders). During one of my appointments, my gastroenterologist noticed my eyes and asked how long they had been red and itchy. When I said they had been this way for years, the provider recommended I go to an ophthalmologist (eye doctor).
My doctors told me that my eye symptoms were due to episcleritis. Episcleritis is inflammation of the episclera, a thin layer of tissue that covers the whites of the eye. The condition can be triggered by allergies, but it is also associated with autoimmune diseases like Crohn’s.
Learning that it wasn’t actually allergies alone that may have been causing my eye symptoms was shocking. I would never have guessed my eyes were trying to tell me for years that something else was going on.
To make my eyes feel better, I apply a cold compress—a treatment I’ve been doing for years.
Inflammation from Crohn’s disease can affect your mouth, including your gums and lips.
My Crohn’s disease was unknowingly causing me mouth ulcers. Mouth ulcers are painful lesions or sores in your mouth that can make it hard to eat. At times, eating was so painful that I lost weight from not eating. The sores seemed to be worse during times of high stress.
Prior to my Crohn’s diagnosis, I thought they were just regular canker sores from my braces. The sores developed on the bottom of my gum line, within the inside of my cheek, and at the corners of my mouth. By blaming the sores on my braces, we ultimately delayed care.
I still get mouth sores today, but now I know they’re a symptom of my Crohn’s disease.
Crohn’s disease impacts your entire body. Your body can be giving you signs of an underlying disease you don’t know about yet. Your body is always talking—you just have to listen and know what you are listening for.
In my experience, a rash, allergies, and mouth sores meant so much more. At the time, I didn’t know these symptoms could be signs of Crohn’s disease. Now, knowing the non-digestive symptoms of Crohn’s and reflecting on my experience, it’s clear my body was trying to tell me something.
Especially if your family has a history of inflammatory bowel disease (IBD) or autoimmune disease, talk with your healthcare provider if you experience any new symptoms. Recognizing and knowing Crohn’s disease symptoms—including its extraintestinal manifestations that may start first—can lead to an earlier diagnosis and better treatment options. Ultimately, that could mean a better quality of life and care.
