Twenty-three years old, working an IT job 60 hours a week, sleeping at his desk and eating on the run, Johnson was also isolated, lonely and chronically stressed. He’d given up his lifestyle as a personal trainer in his college town to “make it” in the corporate world—and it had hit him, hard.
Johnson was diagnosed with ulcerative colitis-an inflammatory bowel disease (IBD) that is thought to be the result of an immune system gone awry and turning to attack the “self”—a classic autoimmune disease.1 Inflammatory bowel diseases including ulcerative colitis and Crohn’s disease affect more than 2.5 million Europeans (300,000 in the UK),2 over 1.4 million Americans and millions more across the globe.3 As the name implies, these diseases are the result of inflammation in different parts of the gastrointestinal tract, and they result in excruciating intestinal ulcers, chronic diarrhea, fevers and impaired absorption of nutrients, which leads to fatigue, leaky gut and weight loss. The diagnosis is not clear-cut: there is overlap between colitis and Crohn’s conditions, and up to 15 percent of cases are difficult to distinguish. Another roughly 15 percent have a diagnosis that changes over time.4
Not just a gut disease
This was the case with Johnson, whose ulcerative colitis diagnosis was just the beginning of his gut saga. “I was told there was no cure, that this was a lifelong condition that I had to manage and that I was at high risk of developing colon cancer and needing surgery to remove my colon if untreated.”
Although doctors used to think of bowel disease as strictly a gastrointestinal disorder, they now know it is orchestrated by the immune system, and new diagnostic tests for the diseases are being developed to look at immune system markers called cytokines that may differ between the conditions.5
Researchers have also found recently that the balance of bacteria, viruses and even worms that inhabit the gut (known as the gut microbiome) and help to digest food, produce nutrients and send signals to our immune system are also key players in the onset of disease. Because it is a systemic disease marked by inflammation, IBD is also associated with many other diseases such as arthritis, coronary artery disease and osteoporosis. And because doctors’ first line of treatment for IBD symptoms are immunosuppressive drugs and steroids, IBD sufferers face a higher risk of infections and lymphoma as side-effects.
When the drugs don’t work, doctors use surgery to section out diseased portions of the intestinal tract, but that entails many risks itself, and its outcomes are far from satisfactory. One review paper reports that recurrence occurs in 70-90 percent of patients within as little as one week after surgery, and 60 percent of patients become symptomatic again within 10 years. One-third of IBD patients who have undergone surgery will undergo it again.6
The secret life of sufferers
Steroids and anti-inflammatory drugs put Johnson’s first colitis “flare” in check, and he quit his high-stress job to seek sun, surfing and the good life in Santa Monica, California, as a remedy. Blessed with good looks and a six-foot-two physique, he started getting lucrative modeling gigs for local clothing lines, and before long, he was swooped up by the prestigious New York-based Ford Models agency.
By age 24, in 2011, Johnson was living in a co-ed models’ house in Miami (“with some of the most gorgeous women I’ve ever seen in my life”), partying hard in Kate Moss style and earning tens of thousands of dollars on photo shoots for clothing lines like Gap and Tommy Hilfiger.
“I thought I was the coolest cat in town and no one could stop me from rising to the top,” he says. Except, of course, that “I could hardly stand and I was experiencing uncontrollable bloody bowel movements.”
Although he was trying to ignore the reality of his diagnosis and enjoy his fairy-tale life, the disease wouldn’t let him. Johnson’s medicine wasn’t working. His gut pain was wrenching, he was running to the toilet 25 to 30 times a day, he had developed cystic acne as a side-effect, and he was losing weight fast.
Eight months after signing with Ford Models, he showed up for a meeting and his agent didn’t even recognize him—he could no longer hide the sickness he was facing. A campaign for Sketchers shoes ended when they sent him home within the first hour of work because he was too skinny and frail. The final straw was when he was unable to control his bowels while wearing thousands of dollars’ worth of high-end clothes. “That was it,” he says, and he was forced to walk away from modeling. “I was just devastated, and I was so ashamed,” he told WDDTY.
Although IBD sufferers are thought to have some genetic susceptibility to the disease, genes don’t explain the whole picture. Since the disease was not described until the industrial revolution, and Crohn’s disease was not defined until 1932, new environmental triggers are thought to underlie the disease process. A wide range of these have been identified, from smoking, formula feeding as a baby and infections7 to the use of prescription drugs like oral contraceptives, nonsteroidal anti-inflammatory drugs, and antibiotics8 and even vaccines, especially those containing aluminum adjuvants….