If you have bloody stools, diarrhea, and belly pain, you may have inflammatory bowel disease (IBD), a group of disorders that affect your digestive tract. The two most common forms are Crohn’s disease (CD) and ulcerative colitis (UC). At least 3.1 million U.S. adults live with some form of this chronic condition. Most of these folks are white, but anyone can develop IBD. In fact, some experts think it’s often unnoticed or undertreated in people of color.
IBD is on the rise in all races and ethnicities, including people who are Black, Hispanic, Latino, and East or Southeast Asian. Understanding IBD by race isn’t simple. But there’s ongoing research to see how diagnosis and treatment may be different for people of color.
How Common Is IBD in People of Color?
Your chance of having IBD is affected by your race or ethnicity. According to a large national survey, here’s a breakdown of the numbers:
- Non-Hispanic white: 1.4%
- Hispanic: 1.2%
- Non-Hispanic Black: 0.5%
- Other races*: 1%
(*This includes people who aren’t Hispanic and identify as either American Indian and Alaska native, Asian, Native Hawaiian and Pacific Islander, or multiple races.)
White people are diagnosed with IBD more than any other racial group. But between 1970 and 2010, one study found that yearly cases shot up 134% for people of color, compared with 39% for white people.
More older people are being diagnosed with IBD, no matter their race and ethnicity. Though, from 2001 to 2018, one study found the biggest increase among non-Hispanic Black adults.
Is IBD Different in People of Color?
It can be a more complicated disease in people of color, but reasons why aren’t clear. Many experts think outside factors have a big role in how the disease plays out. Some researchers, however, didn’t find a lot of difference in IBD among racial and ethnic groups.
But a delay in getting your diagnosis, or less access to medical care, may cause you to miss getting the best treatment or to have more active disease.
So far, here’s what studies have found:
Crohn’s disease. Gut inflammation may be more widespread and severe in people who are Black, Hispanic, or Asian, especially South Asian. Other researchers, however, didn’t find those differences.
For instance, it’s not clear if people of color are more likely than white people to develop perianal Crohn’s disease (PCD). That’s a more serious type of inflammation near your anus. PCD can cause pus, blood, or stool to leak out of your rectum.
But there’s some evidence that Crohn’s disease in Black or South Asian people may be a more serious or “penetrating” type. You might get complications such as a fistula. That’s an abnormal tunnel that connects your inflamed intestine with other parts of your body, including your intestines, bladder, or vagina.
Health issues from severe Crohn’s also include:
- A narrowing of your intestines (stricture)
- Infections from an untreated fistula (abscess)
- Bowel cancer
Ulcerative colitis. The way it affects you can be different according to your race or ethnicity.
For example, some studies have found that:
- Black people are more likely to have left-sided inflammation or disease around the rectum and anus (proctitis).
- Hispanic people are more likely to have inflammation in their entire colon.
- Certain groups of Asian people are less likely to have widespread disease.
- South Asian people may be more likely to develop UC than people from China.
Racial Disparities in IBD Care
Because of decades of discrimination, people of color often have less access to health insurance and high-quality medical care for IBD.
Commonly underserved groups include people who are:
- Hispanic or Latino
- American Indian or Alaska Native
- Non-native English speakers
If you’re a person of color, health care hurdles can cause:
- Delay in diagnosis of IBD
- Less access to IBD specialists
- Lack of knowledge about causes or treatment for IBD
- Trouble sticking with your treatment plan
- Trouble communicating with your doctor
- Higher use of emergency room care
- Worse outcomes after surgery, including death
Your problems with IBD can get worse the longer your inflammation goes untreated.
Studies aren’t clear about whether people of color get different kinds of IBD medication compared with other races. Some found that certain racial and ethnic groups are more likely to get long-term steroids and less likely to get newer IBD drugs such as biologics or immunomodulators. But these racial differences don’t show up in other studies.
Risk Factors to Watch For
A number of things can raise your odds of developing IBD. These include:
Diet. If you eat a typical Western diet high in animal fats and sugar, but low in fruits and vegetables, you’re more likely to develop IBD.
Lifestyle. If you smoke cigarettes, that can damage the lining of your gut, which boosts your chances of Crohn’s disease.
Socioeconomic status. If you have IBD and your income is low, you’re at greater risk for more serious IBD that leads to hospitalizations, intensive care unit (ICU) stays, and death.
Where you live. People of color born in the U.S. are usually more likely to get diagnosed with IBD than those born in other countries. But your chances of having IBD go up if you move from a country with low rates of it to a country where it’s more common.
Genetic differences. All humans have similar DNA, regardless of race. But you can inherit certain genetic changes from your parents. Some of those mutations are linked with IBD. Your genes may also affect how you respond or react to IBD medications.
We need more research to know how genes affect IBD in people of color.
Symptoms Aren’t Different
IBD affects everyone in a unique way. But general symptoms tend to be the same for all races and ethnicities.
Some signs of IBD include:
You may also have:
- Lack of hunger
- Weight loss without trying
- Low red blood count (anemia)
IBD isn’t usually life-threatening for most people, but unchecked inflammation can raise your odds of serious problems. While there isn’t a cure for IBD, treatment is key to controlling it. But you’ll need the right diagnosis to get the best care.
What You Can Do
Bring up any ongoing belly or bowel symptoms with your doctor. If it seems like you have IBD and they don’t want to check for it, ask them why. Keep in mind it’s always OK to get a second opinion from another doctor.
Dietary changes, medication, or surgery can help control IBD. Your health care team can tailor a treatment plan based on your symptoms.
If you’re a person of color with IBD, you can also:
- Go over your health goals once you have a diagnosis
- Ask how your doctor will measure your progress
- Find out all of your treatment choices
- Keep up with your check-ups
- Join a clinical trial