The Secret History of Crohn's Disease

Crohn's disease isn't your typical conversation starter at a dinner party. Chalk that up to the taboo nature of rectal pain and how fatigue and unpredictable bowel movements can render even the greatest of party animals into homebodies.

Celebrities with Crohn's disease

No one is sure what causes Crohn's disease, but it's not uncommon. Much of our knowledge of the disease comes from the experiences of those who have the condition.

It's estimated that more than 750,000 people in the United States have Crohn's, according to Cleveland Clinic.

This large list includes several celebrities, such as:

• Kathleen Baker, Olympic medalist swimmer
• Beth Orton, musician and singer
• Pete Davidson, comedian, former Saturday Night Live cast member
• Shannon Doherty, actress, Little House on the Prairie and 90210
• Dwight Eisenhower, 34th president of the U.S.
• Jon Landau, rock music critic and record producer
• Mike McCready, guitarist in the band, Pearl Jam
• Larry Nance, Jr., Cleveland Cavaliers

Crohn's throughout history

Awareness of Crohn's has existed for centuries, even if physicians of the past didn't understand the disease the way the modern world does.

Here's a journey through the last couple of millennia:

• 400 BCE: The Greek physician Hippocrates—the man the Hippocratic Oath is named after—discussed the possible causes of chronic diarrhea.
• 1769: Italian anatomist Giovanni Battista Morgani (1682-1771) published "De Sedibus et Causis Morborum" ["The Seats and Causes of Diseases"] in which he described a patient diagnosed with debilitating, chronic diarrhea.
• 1859: Samuel Wilks autopsied a 42-year-old woman who died after months of diarrhea and fever and diagnosed her with "simple ulcerative colitis," which would become known as Crohn's.
• 1888: Sir William Hale-White, possibly inspired by the new and controversial "germ theory," pinpoints cases he calls "ulcerative colitis" that are not caused by "growth, dysentery, tubercle, typhoid and so forth." Ulcerative colitis (UC) now officially enters medical terminology.
• 1907: The invention of an electrically lit proctosigmoidoscope allows J.P. Lockhart-Mummery to examine the sick colons of living patients visually.
• 1913: Sir Thomas Kennedy Dalziel reported, in detail, cases in which tuberculosis (though suspected) was excluded by careful bacteriological studies, shared a 2020 report. He coined the condition "regional enteritis," which opened other physicians to the notion of a benign and chronic condition in the small intestine, totally separate from tuberculosis.
• 1932: Dr. Burrill B. Crohn, Dr. Leon Ginzburg and Dr. Gordon D. Oppenheimer tracked the case studies of 14 patients, aged between 17 and 52, in a 2022 report. While other studies would be published between now and then, the disease was named after Dr. Crohn, as his team developed a diagnosis separate from ulcerative colitis, instead of grouping UC and Crohn's into one condition.
• In 2014, former model Bethany Townsend posted a picture modeling a bikini and two colostomy bags. The picture has been viewed over 9 million times

Myths and misconceptions of Crohn's disease

We've come a long way from those ancient thinkers postulating on the origins of diarrhea but there are still some tales out there that should not be believed.

Pratima Dibba, M.D., of Manhattan, New York, and Dung Trinh, M.D., of Orange County, California, outlined the seven most common myths and misconceptions concerning Crohn's disease.

Myth: Only young people get Crohn's disease

Fact: While Crohn's disease often develops in people aged 15 to 35, it can occur at any age, including young children and older adults.

Myth: Crohn's disease only affects the digestive tract

Fact: While the digestive tract is most commonly affected by Crohn's disease, it can also affect other parts of the body such as the joints, skin, eyes and liver.

Myth: Surgery can cure Crohn's disease

Fact: While surgery can remove damaged or diseased portions of the intestine and provide symptom relief for some people with Crohn's, it does not cure the underlying condition. Symptoms may return after surgery or develop in other areas of the digestive tract.

Myth: Crohn's is caused and cured by diet

Fact: Diet does not cause Crohn's disease. Although some patients find that dietary changes help manage symptoms, this intervention does not specifically cure inflammation in the gut and is not an alternative to medical therapy for Crohn's disease.

Myth: Irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD), which includes both Crohn's disease and colitis, are the same

Fact: IBS and IBD are two distinct disease entities, with different behaviors, causes and treatments. There is also a misconception that a patient cannot have both Crohn's and ulcerative colitis. Gastroenterologists may have a small subset of patients who demonstrate characteristics of both so it is not uncommon to be diagnosed with ulcerative colitis initially and later be found with Crohn's disease instead.

Myth: A Crohn's diagnosis means surgery is inevitable

Fact: Up to 75 percent of Crohn's patients do require surgery, but one-fourth do not, suggested a 2020 report.

Myth: Crohn's disease will take over my life and my symptoms will never be under control

Fact: The medical community has made immense progress in the field of Crohn's disease and there are several medications available that can control disease activity with a goal of minimal to no symptoms. A patient with Crohn's disease can live a healthy, active life and be symptom-free.

Dating and sex with Crohn's

While there are first-hand accounts of the condition's impact on intimacy, Trinh noted that untreated Crohn's can affect your sexual health as well.

"People with untreated Crohn's disease may be more susceptible to infections due to weakened immune function," he said.

Genital and lip skin is already particularly delicate and vulnerable and so maintaining sexual hygiene is critical for those with compromised immune systems. If you're planning to spend the night away from home, pack a supply of a few days' medication.

Think twice about drinking alcohol. Diarrhea already dehydrates your body, so drinking alcohol can further dehydrate your body. If your health has been recently compromised by a Crohn's flare, a mocktail or other non-alcoholic beverage could help prevent further distress.

Anal or genital stimulation might not be desirable while going through a Crohn's flare. One hack for pain management is to consider sealing in prescription or over-the-counter hemorrhoid creams with Vaseline.

The bottom line

If you carry an ostomy, a bag for bodily waste installed with surgical intervention, you aren't alone. One in 500 Americans carry an ostomy, according to the Crohns and Colitis Foundation.

Your healthcare provider will help you determine the best way to manage your Crohn's disease, so you can live life to the fullest.