4 unexpected signs of Crohn's disease

When you or a family member has Crohn’s disease, you may think you know what to expect. After all, Crohn’s is an inflammatory bowel disease (IBD) that affects the whole gastrointestinal tract. So GI symptoms like diarrhea and belly cramps may become part of life for the more than half a million Americans who have Crohn’s.1

But this disease may affect people differently because Crohn’s is thought to be an autoimmune disorder. That means the immune system goes rogue, destroying healthy cells in the body by mistake, explains Sarah Robbins, M.D., a gastroenterologist, nutrition specialist and founder of Well Sunday, a nutrition and gut health resource platform. Typically, it attacks the cells lining the intestines. But “this immune response could potentially target tissues outside of the gut,” Dr. Robbins says.

In other words, Crohn’s symptoms can show up in other areas of the body too. Read on to find out the more unusual symptoms of Crohn’s — along with the more typical ones — and what to do about both.

Surprising signs of Crohn's disease

When symptoms occur in other parts of the body, they are called extraintestinal manifestations (EIMs) — symptoms outside of the gut. Roughly 25-40% of people with Crohn’s have at least one of these more unusual signs.2 And about 25% of them may develop one before a provider diagnoses them with Crohn’s disease.3

That’s why it’s important to talk to a provider if you experience any type of unusual symptom, including these 4.

1. Anemia

About 1 in 3 people with Crohn’s has anemia, which means you don’t have enough red blood cells to carry oxygen to the brain and body. One reason — Crohn’s can cause internal GI bleeding, so you may be losing blood regularly.4

Another cause is the link between Crohn’s disease and your body’s problems absorbing iron and other nutrients.

Anemia can be diagnosed with a blood test, but you might feel symptoms first. Those include dizziness, lightheadedness, headaches and fatigue.4

2. Eye pain

Inflammation can affect various parts of the eyes too, says Dr. Robbins. So, people with Crohn’s may have eye issues, like mild or moderate irritation or inflammation in the eyeball which can lead to redness and pain. Sometimes inflammation may attack the middle layer of the eye (known as uveitis), which if untreated can lead to vision loss.5

3. Joint pain

You may feel achy all over as a result of Crohn’s disease. About a third of people with IBD, which includes Crohn’s, suffer from some type of joint issue because of inflammation. 2

“Inflammation often affects the large joints of the arms and legs, including the elbows, wrists, knees and ankles,” says Dr. Robbins. Some people also have lower back pain.

Joint pain may come and go and can be managed with medications. Sometimes, patients find that joint pain minimizes as their GI tract heals. Sometimes people with Crohn’s disease may develop arthritis, which is another reason why it’s important to make sure Crohn’s is being well managed.

4. Skin changes

Skin issues or changes affect 1 in 5 people with IBD.2 That includes red bumps, ulcers on the skin or canker sores in the mouth. In fact, says Dr. Robbins, mouth sores can be an early sign of Crohn’s.

Other skin problems include painful red bumps on the shins, known as erythema nodosum, Dr. Robbins adds. Many of these skin issues are caused by inflammation. But there are skin conditions such as small tears around the anal area that come from having chronic diarrhea or constipation.

Other symptoms of Crohn’s disease

Since inflammation typically attacks the small intestine when you have Crohn’s disease, you may have these more typical signs:6

  • Diarrhea, usually continuous
  • Bloody stool or bleeding from the rectum
  • Feeling as if you haven’t had a complete bowel movement (BM)
  • An urgent need to have a bowel movement  
  • Cramps and belly pain
  • Constipation

After a while, people with Crohn’s may develop the following symptoms, especially if the disease isn’t well treated:

  • Feeling exhausted or without energy
  • Weight loss, as minerals and vitamins aren’t being absorbed by the body
  • Loss of appetite

Symptoms may ebb and flow based on your diet, stress levels, hormonal fluctuations and other factors.7 And because symptoms may come and go, Dr. Robbins recommends keeping a symptoms journal. Then talk with a provider about anything unusual, especially if it’s not directly related to GI issues.

All these symptoms, typical or not, can be managed with medications. These usually include drugs to bring down inflammation as well as medications to help treat symptoms caused by the inflammation. These drugs, including steroids, anti-inflammatories and biologics, can clear up symptoms and let the intestines heal.

The key is working with a provider or gastroenterologist to manage Crohn’s, says Dr. Robbins. Together, you can come up with a long-term plan to reduce the risks of complications and improve your quality of life.

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