My First Signs of Crohn's Disease Weren’t Digestion-Related: What To Look Out For

Crohn’s disease is often synonymous with digestive turmoil—stomach cramps, relentless nausea, and unpredictable diarrhea. But what if I told you that the first whispers of this condition might not come from your gut at all? Gaylyn Henderson, MPH, Health’s Crohn’s Disease Advocate, shares her story, revealing that her earliest symptoms had nothing to do with digestion.

Crohn’s disease is far more than a digestive disorder. It’s an autoimmune condition, a rebellion within the body where the immune system mistakenly attacks its own tissues. This internal chaos sparks inflammation, which can rage far beyond the intestines, infiltrating nearly any part of the body. When symptoms arise outside the digestive tract, they’re called extraintestinal manifestations (EIMs). These EIMs can target the joints, skin, eyes, and more, often serving as cryptic harbingers of an underlying issue. For many, like Gaylyn, these signs appear long before a formal diagnosis, offering clues that, if recognized, could lead to earlier intervention.

Reflecting on her journey, Gaylyn recalls moments that, in hindsight, were glaring red flags. At 14, blood in her stool was the undeniable signal that something was wrong, leading to her Crohn’s diagnosis. But the story didn’t start there. A year earlier, subtle yet persistent symptoms had already begun to surface—symptoms she now realizes were her body’s way of sounding the alarm.

1. The Rash That Wouldn’t Quit

In eighth grade, a rash appeared on the crease of her left arm. It wasn’t just a fleeting irritation; it was angry, inflamed, and unrelenting. For nearly a year, it itched, burned, and demanded attention. She wore bandages to hide it, but the rash refused to be ignored. Doctors were baffled, offering no cure or explanation. Today, Gaylyn knows the truth: that rash was her immune system’s cry for help, an EIM of Crohn’s disease. Had she known then that a stubborn rash could signal a deeper issue, she might have sought answers sooner.

2. Eyes That Told a Story

Growing up in the South, allergies were a constant companion. Pollen, ragweed, and seasonal shifts left her eyes perpetually red, swollen, and itchy. Mornings were the worst—her eyelids would feel glued shut, and only a cold compress could bring relief. For years, she blamed it on the environment. But after moving to Washington, D.C., a gastroenterologist noticed her inflamed eyes and suggested a visit to an ophthalmologist. The diagnosis? Episcleritis, an inflammation of the eye’s outer layer often linked to autoimmune diseases like Crohn’s. Those “allergies” she’d endured for years? They were another piece of the puzzle, a sign her body had been trying to reveal for far too long.

3. Mouth Ulcers That Spoke Volumes

Mouth ulcers were another silent symptom. Painful, persistent sores lined her gums, the inside of her cheeks, and the corners of her mouth. Eating became a battle, and weight loss followed. At the time, she attributed them to her braces, dismissing them as ordinary canker sores. But these ulcers weren’t just orthodontic nuisances—they were manifestations of Crohn ’s-induced inflammation. Even today, they flare up during stressful periods, a reminder of the disease’s far-reaching impact.

Listen to Your Body

Crohn’s disease doesn’t confine itself to the gut. It’s a systemic condition, capable of sending signals through every corner of your body. For Gaylyn, a rash, itchy eyes, and mouth sores were more than isolated annoyances—they were her body’s way of communicating an underlying struggle. At the time, she didn’t know how to interpret these signs. Now, with the wisdom of hindsight, the message is clear: her body was speaking, and it was up to her to listen.

If you or someone you know experiences unexplained symptoms—especially with a family history of inflammatory bowel disease (IBD) or autoimmune conditions—don’t dismiss them. Recognizing the extraintestinal manifestations of Crohn’s disease can lead to earlier diagnosis, better treatment, and ultimately, a higher quality of life. Your body is always talking. The question is, are you listening?