Crohn's Disease Facts and Statistics: What You Need to Know

Crohn’s disease is an immune-mediated condition that causes inflammation in the body, primarily in the digestive system. Some hallmark symptoms are fatigue, diarrhea, unintended weight loss, and abdominal pain. There can be many other symptoms too, and people with Crohn’s disease are at risk of developing other conditions.

It’s estimated that nearly 790,000 people live with Crohn’s disease in the United States. Once thought of as a disease that affects primarily White populations, it is increasingly being understood to be a global disease, affecting people of all nationalities and ethnicities.

This article will highlight some important facts and statistics about Crohn’s disease.

Gastroenterologist explains imaging results to person with Crohn's disease

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Crohn’s Disease Overview

Crohn's disease is one form of a group of conditions called inflammatory bowel disease (IBD). It is a lifelong disease and can be managed but does not currently have a cure.

Crohn's disease causes deep ulcerations in the intestinal tract. It can also affect other parts of the body, including the skin, eyes, and joints.

The causes of Crohn's disease aren't currently known. However, it is thought to result from a complex interaction among genetics, environmental triggers, and a disturbance in the intestinal microbiome (the population of bacteria and other microbes that live in the digestive tract).

How Common Is Crohn’s Disease?

Crohn's disease is considered a common disorder because of the number of people it affects. In other words, it's not a rare condition.

Prevalence is the number of people in a certain population who have a disease or condition at a certain point in time. Crohn's disease's prevalence differs between geographic regions, even in the United States.

However, the prevalence is thought to be increasing. The increase may be partly because Crohn's disease is often diagnosed in young people. It's not usually a fatal disease (people live a typical lifespan), so the number of people living with Crohn's disease increases yearly.

IBD affects a substantial proportion of the U.S. population. A 2016 study noted IBD had been diagnosed in:

  • Adults: One in 209
  • Children (2 to 17): One in 1,299

When researchers in the study compared this with data from 2009, they noted that the prevalence had increased.  

In parts of the world other than Europe, Canada, and the United States, IBD appears to be increasing. As some countries become more industrialized, their rates of Crohn's disease and other forms of IBD are increasing.

Crohn’s Disease by Ethnicity

There is a lack of good data on how Crohn’s disease affects people of various ethnicities and who may be at risk for more severe disease.

It was once thought to be primarily a disease that affected people of Western European, Northern European, or Jewish descent. In the United States, the rate of IBD in people of European or Ashkenazi Jewish descent (Jewish populations mainly in central and Eastern Europe) is higher than in other groups.

However, it is now known that IBD can and does affect people of all ethnicities and backgrounds. The population of the United States is changing, and so is the rate of Crohn’s disease and other forms of IBD.

This lack of recognition and diagnosis of Crohn’s disease in all ethnicities has had a destructive effect, including longer times for diagnosis and treatment. The rates of Crohn’s disease and other forms of IBD may be increasing outside of the United States and in certain populations within the United States, such as African Americans.

One study showed the rate of IBD in a large group of people. The percentage of people with Crohn’s disease by ethnicity was found to be:

  • All populations: 1.06%
  • European non-Jewish: 1.56%
  • Ashkenazi Jewish: 2.38%
  • African American: 0.69%
  • Hispanic: 0.65%

One group of people that seem to be at a higher risk of developing Crohn’s disease are immigrants to the United States from countries with lower rates of IBD. This effect has also been seen in Canada, another country with higher rates of IBD.

Crohn’s Disease by Age and Gender

Crohn’s disease can affect people of all ages and genders. Most studies on IBD focus on the rate in men and women, so there is no good data on people of other gender identities.

A 2016 estimate is that out of every 100,000 adults, 198 will have Crohn’s disease. For children, this is estimated at 46 per 100,000. The disease appears to affect men and women roughly equally. However, among children, there are slightly more cases diagnosed in boys than in girls. For adults, slightly more cases are diagnosed in women than in men.

Crohn’s disease and other forms of IBD are diagnosed more often during the tween and teen years. The increase in pediatric Crohn’s disease is largely due to it being diagnosed more frequently in children between the ages of 10 and 17.

Causes of Crohn’s Disease and Risk Factors

Crohn's disease and other forms of IBD are idiopathic, which means the exact cause isn't known.

A complex interaction of factors is thought to lead to the development of Crohn's disease. These include genetics, environment (such as diet, smoking, and pollution), antibiotic use, having had an appendectomy (removal of the appendix), and the microbiome.

Hundreds of genes have been identified that are related to IBD. The disease tends to run in families. Somewhere between 2% and 14% of people with Crohn's disease have a family history of the disease.

What Are the Mortality Rates for Crohn’s Disease?

It is not common for Crohn’s disease to be fatal. That’s not to say people don’t ever die from complications from Crohn’s disease. IBDs are complex and can affect people severely, causing serious illness and disability. However, it is not generally thought of as being a fatal disease.

People with Crohn’s disease are at risk for other health conditions. These include other immune-mediated conditions like arthritis and more serious diseases, such as some forms of cancer.

One study out of Norway showed that people with Crohn’s disease were no more likely to die from any cause (including cancer) than people who didn’t live with the disease.

Another study showed that certain conditions are more closely associated with mortality in Crohn’s disease. These include venous thromboembolism (clots in blood vessels that break free and block other blood vessels) and Clostridium difficile (C. diff) infection.

However, these data are far from settled, and there are open areas of controversy about mortality and Crohn’s disease, such as in regards to smoking.

Screening and Early Detection

Being diagnosed in a timely manner is important to avoid complications from untreated Crohn’s disease.

However, Crohn’s disease is not a condition for which there is a regular screening tool. The diagnosis is based on symptoms leading to testing. One test procedure is a colonoscopy (a flexible tube with a camera is inserted through the anus to visualize the colon), in which biopsies (tissue samples) are taken to be analyzed in the lab.

The key is for people who may have the condition and healthcare providers to recognize symptoms and look deeply for a cause. The symptoms of Crohn’s disease can be similar to many other conditions, making a diagnosis difficult.

Summary

Crohn’s disease is a common condition that is increasingly being diagnosed in certain groups and in different areas of the world. It’s not considered a fatal disease, but it can be serious and also be associated with other conditions.

Diagnosis can be difficult and take time, which is why it’s important for people who may have the condition and healthcare providers to be informed about the disease and to pay close attention to symptoms and family history.

Frequently Asked Questions

  • How often is Crohn's disease fatal?

    People with Crohn's disease don't die at a rate different from the general population. Severe disease is possible, however, and some people may have life-threatening complications.

  • Who is most at risk of developing Crohn's disease?

    Crohn's disease is more common in people of European and Ashkenazi Jewish descent. However, it can affect people of any background and is increasing in some groups of people. In particular, rates are increasing among people who have immigrated to a country with a higher prevalence of IBD from a country with a lower prevalence,

  • How do you know if you have Crohn's disease?

    Symptoms such as fatigue, unintended weight loss, diarrhea, abdominal pain, and blood or mucus in the stool can happen with Crohn's disease. However, these symptoms can occur with many other digestive problems.

    For that reason, it's important to talk to a healthcare provider and get tested to find out what is causing the symptoms. If Crohn's disease is suspected, a colonoscopy is one part of the process to either diagnose the condition or rule it out.

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