When people hear about Crohn’s disease, they typically think of symptoms related to the digestive system—such as abdominal pain, nausea, and diarrhea.
However, Crohn’s disease is not confined to the digestive tract. It is an autoimmune condition, which means the immune system mistakenly attacks healthy cells, causing widespread inflammation. This inflammation can affect different parts of the body, not just the intestines.
When symptoms of Crohn’s disease appear outside the digestive tract, they are referred to as extraintestinal manifestations (EIMs). EIMs can affect various parts of the body, including the joints, skin, and eyes. Sometimes, these symptoms are the first indication that something is wrong, even before any digestive issues begin. Recognizing these signs early could lead to faster diagnosis and treatment.
Reflecting on my journey with Crohn’s, I now realize there were symptoms that pointed to the condition long before I was diagnosed. If I had known these were possible signs of Crohn’s, I might have sought help earlier.
1. Rash
In eighth grade, I had a large, itchy, red rash on the crease of my left arm. It was inflamed and uncomfortable, and I often covered it with a bandage. Despite visiting several doctors, no one could explain it or treat it effectively. That rash lasted almost a year and left a visible scar that I still have today.
A year later, I was diagnosed with Crohn’s disease. Looking back, that rash was likely a reaction caused by my immune system—an early extraintestinal sign of Crohn’s. If I had known that rashes could signal a chronic condition, my family and I might have requested different medical tests.
2. Itchy, Red Eyes
Growing up, I always assumed I had severe allergies. I lived in an area with high pollen levels, and nearly all year long I suffered from allergy symptoms, especially swollen, red, and itchy eyes. Some mornings, I would wake up feeling like my eyes were glued shut. Cold compresses were the only thing that provided relief.
Years later, while seeing a new gastroenterologist, I mentioned how long I had dealt with red and itchy eyes. The doctor referred me to an eye specialist, who eventually diagnosed me with episcleritis—inflammation of the thin layer covering the whites of the eyes.
Though it can be triggered by allergies, episcleritis is also linked to autoimmune diseases like Crohn’s. Realizing my eye issues weren’t just due to allergies was a surprise. It turned out my body had been signaling something deeper all along.
Even now, I still use cold compresses to ease the discomfort.
3. Mouth Ulcers
Crohn’s disease can cause inflammation not only in the gut but also in the mouth, including the gums and lips. Before my diagnosis, I frequently experienced painful mouth sores that made it hard to eat. These ulcers worsened during stressful times and often led to weight loss from not eating enough.
At the time, I thought the sores were caused by my braces. The ulcers appeared along the gum line, inside the cheeks, and at the corners of my mouth. Blaming them on my braces delayed further evaluation and care.
Now I know that these mouth ulcers are a symptom of Crohn’s disease. I still get them from time to time, but I understand what they mean.
Listen to Your Body
Crohn’s disease can affect the entire body. Sometimes the earliest warning signs have nothing to do with your stomach or digestion. Instead, your body may be trying to communicate through other symptoms—rashes, eye irritation, or mouth sores.
In my case, those symptoms were early messages. At the time, I didn’t realize what they meant. But now, I see that my body was asking for help long before I received a diagnosis.
If you or someone in your family has a history of inflammatory bowel disease or other autoimmune conditions, talk to your healthcare provider if new symptoms appear—whether digestive or not. Recognizing early signs, including extraintestinal ones, can lead to quicker diagnosis and more effective treatment, potentially improving your quality of life and long-term health.
