Michelle Pickens’ symptoms escalated in college. At the time, she was throwing up at least once a day, and experiencing frequent nausea, abdominal pain, diarrhea, and constipation. Juggling classes with work at a design studio became an extreme exercise in perseverance. She knew in her gut that something was wrong.
Yet three different doctors “wrote it off as stress,” says Pickens, now 32, who lives in Annapolis, Md. Lab work and procedures to see inside her gastrointestinal tract showed nothing abnormal. “No one wanted to dig deeper,” she recalls. In a final act of desperation, Pickens saw yet another doctor, and this one gave her a different kind of test: a pill-sized camera to swallow. It revealed an angry area of inflammation deep within her bowel—a “blind spot” that the colonoscopy and endoscopy hadn’t reached. It was Crohn’s disease.
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Crohn’s is one of two types of inflammatory bowel disease (IBD), a chronic condition that causes the intestinal tract to become swollen and sometimes painful. Crohn’s affects the entire digestive channel from mouth to anus, while ulcerative colitis (UC) impacts the colon, sometimes creating sores along the lining of the large intestine.
“The underlying reasons for IBD are still under investigation,” says Dr. Florian Rieder, vice chair of the department of gastroenterology, hepatology, and nutrition, and co-director of the inflammatory bowel disease section at the Cleveland Clinic in Ohio. It’s clear that certain people are more vulnerable to IBD, due to some combination of genetic, environmental, and lifestyle factors. Whatever the catalyst, IBD arises when the immune system uses its trademark weapon—inflammation—to attack healthy gut tissue as if responding to infection or injury.
Approximately 1 in every 100 Americans is living with the disease, according to recent prevalence data published in the journal Gastroenterology. Diagnosing IBD and treating it promptly is critically important, as it can have serious, potentially life-threatening health complications, says Dr. Jordan Axelrad, director of research for the Inflammatory Bowel Disease Center at NYU Langone Health in New York City.
But as Pickens knows all too well, IBD can fly under the radar. Clouding the picture are abundant myths and misconceptions, which at best create confusion—and at worst, cause harm. Here are six that doctors and patients would like everyone to digest.
1. Myth: IBD and IBS are the same thing.
Fact: While their acronyms are nearly identical and their symptoms can overlap, irritable bowel syndrome (IBS) and inflammatory bowel disease are hardly carbon-copy conditions.
Understanding which one is at play is essential. That’s true not just for peace of mind, but because the treatments—and potential health consequences—are different.
Over time, IBD’s hallmark trait of inflammation can damage the body, even setting the stage for certain cancers, particularly of the colon, experts say.
IBS, meanwhile, doesn’t cause inflammation or raise the risk of cancer. Unlike IBD, it is not a disease but a constellation of symptoms that can absolutely be debilitating but without causing bodily harm.
In short: “IBD causes tissue damage. IBS does not,” Rieder says.
And how’s this for a gut punch? People can have both conditions at the same time—some 30% to 50% of IBD patients may also develop IBS, according to the Cleveland Clinic.
2. Myth: IBD only affects the gut.
Fact: It can impact the joints, bones, kidneys, liver, eyes, and skin (picture: ulcers or red nodules), for example. These beyond-the-gut issues happen in about one-third to half of patients with IBD, Rieder says.
Sometimes, they’re “the first clue” of an impending IBD diagnosis, according to a Harvard Medical School publication. In existing patients, they may signal “the need for treatment review and adjustment” to better control the disease and its health complications.
“When I first tell people I have Crohn’s, they say, ‘Oh, it’s the poop disease,’” Pickens says. “Yeah, it involves the digestive system, but it’s so much more than that.”
Read More: IBD Patients on the Most Effective Ways Doctors Can Treat Their Condition
3. Myth: Diet is a permanent fix for IBD.
Fact: “This is a huge misconception,” Axelrad says. “I hear this very often—if not from patients, then from their family members.”
The internet is full of claims that special diets are the antidote to IBD, he says. “This has been studied and unfortunately, no specific diet has been shown to cure IBD, and very few dietary interventions have been shown to reduce inflammation in IBD.” Similarly, there is no definitive proof that specific foods cause IBD and its inflammatory response, adds Axelrad, who is also a spokesperson for the American Gastroenterological Association.
Of course, everyone knows that eating certain foods can trigger GI symptoms. “If we eat a giant kale salad, we might feel bloated after,” he points out. “But it’s not because we’ve made our gut more inflamed.”
For people with IBD, reaching for those foods may worsen symptoms. That’s why Axelrad often recommends trying IBS-friendly eating patterns designed to ease gas, bloating, abdominal pain, and other GI issues. “That can just make patients feel a lot better, even if it’s doing nothing to reduce their underlying inflammation.”
4. Myth: Only adults get IBD.
Fact: People are most often diagnosed between ages 15 to 40, but the disease can affect anyone, Rieder explains. “There are thousands of children around the world with inflammatory bowel disease.”
Take it from Sneha Dave. The 25-year-old from Indianapolis was 6 when she developed ulcerative colitis. “I’ve lived with it my whole life,” says Dave, founder of Generation Patient, an advocacy organization for young adults living with chronic conditions. As part of this work, she runs a fellowship for young people with IBD in the U.S. and all over the globe, including in countries like India and Ethiopia.
“I had very early onset IBD, which tends to be a lot more aggressive and severe,” she says. Extremely ill for much of her childhood, she was in and out of the hospital. By high school, she weighed just 60 pounds, prompting surgery to remove her diseased colon and rectum.
She now lives with a J-pouch—essentially a makeshift bowel surgeons created using her small intestine, restoring continence and bowel function. She still requires medication to manage her underlying disease and flare-ups, which is an excellent segue to the next point of confusion.
5. Myth: Surgery is a cure.
Fact: For certain patients with IBD, surgery is an essential and sometimes lifesaving treatment. It may curb debilitating symptoms when medications don’t work or lose their edge. Make living manageable. Prevent death. (Over time, IBD-related inflammation can create medical emergencies—a swollen-shut intestine, say, or hole in the colon wall.)
But the story doesn’t end when damaged organs are removed. “Some patients may feel that cutting it out cures you,” Rieder says. “That’s certainly not the case.”
After surgery, Crohn’s “invariably comes back,” and more than half of people with ulcerative colitis will see their inflammation return, at least temporarily, despite having a new bowel fashioned from healthy tissue, Rieder explains.
Because of this, Crohn’s patients who undergo surgery are typically put on preventive medications to keep IBD at bay, while people with ulcerative colitis generally start medication when their symptoms return post-operatively.
To learn that drug therapy may be a lifelong reality after surgery? “It’s disappointing,” Dave says, especially because many of these medications are no cakewalk. “Surgery is an amazing option for many patients, but it’s important to know the full story early on.”
A major goal of IBD treatment is to achieve remission. That means “healing up the gut”—i.e., getting the affected areas to look as normal and uninflamed as possible on tests—and helping patients feel better, Axelrad says.
Treatments for IBD typically range from medication to surgery, often in combination. Both paths are used to help quell symptoms and curb internal damage.
One big medication category includes biologics, usually in the form of monoclonal antibodies, which are lab-made immune system proteins designed to target and tamp down that erroneous attack on healthy tissue. These are usually given via in-the-vein infusions or injections, Rieder says.
The other large category includes small molecules, “chemical structures” taken in pill form to control the immune system, Rieder says. There are other drug options, too, from antibiotics to steroids, depending on a patient’s disease type, risk factors, and needs.
As with any medication, these drugs aren’t without side effects. Some may create an opening for infections by dampening immunity. Some may raise cancer risk. Some come with nausea or skin rashes, for example.
This helps explain why many patients who need IBD surgery aren’t pleased to learn that IV infusions every few weeks or daily pills may remain fixtures in their lives, Rieder says: “It’s a fact that’s not easy to take.”
“Overall, the medications that we use are safe,” he adds. “They have been extensively tested, and the effect of the drugs outweighs the risk for side effects.”
As Axelrad puts it, “These medications are there to give patients back their lives.”
Read More: How to Maintain Your Social Life When You Have IBD
6. Myth: Very little can be done.
Fact: The notion that IBD is a one-way ticket to lifelong suffering from which there is no relief comes up a lot, Axelrad says. His response is simple: “There are really a lot of options from a therapeutic standpoint to improve patients’ quality of life, reduce inflammation, and reduce complications,” he says. And he should know, not only as a physician in the field but as someone who also lives with Crohn’s.
Today, Dave describes living a very normal life. “I’ve gotten to climb mountains,” she says. She frequently travels around the country and world as part of her Generation Patient advocacy work.
Pickens, who now has two young kids, is also content with her journey. So far, she hasn’t needed surgery. Trial and error with several medications finally led her to a biologic that she says is working. Although she isn’t symptom-free and needs IV infusions every six to eight weeks—a two-and-a-half-hour process each time—she says it’s worth it. “I finally got a clear colonoscopy, which is really exciting.”
Pickens is “sharing the realness” of her IBD journey on social media and other platforms under the moniker Crohnically Blonde. A patient influencer with the American Gastroenterological Association, she says being someone others can “vent back and forth with” and making people feel less alone gives her purpose.
She isn’t shy about describing the time she barfed in secret on a first date with her now-husband, a nurse who didn’t make her feel judged or “like it was gross or embarrassing” when she was in the hospital “going through all these bowel movement things,” early in their relationship. Therapy helps her cope with the emotional toll of the disease. “There are a lot of negative ways that IBD has impacted my life,” Pickens says. “But it has impacted me positively, too.”
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