Lauren J. Mapp | The San Diego Union-Tribune

When Vista resident Michelle Harvey packed an overnight bag so her son could undergo testing at Rady Children’s Hospital in June 2020, she expected to return home the following day. Instead, Mason Harvey was hospitalized for two months as he was diagnosed and subsequently treated for Crohn’s disease, an inflammatory bowel disease marked by chronic inflammation in the digestive system.

Prior to his hospital stay, a blood test showed that Mason had low levels of hemoglobin — the protein found in red blood cells that carries oxygen throughout the body. He weighed about 45 pounds, much lower than the 60 to 120 pounds that is typical for an 11-year-old boy.

Mason was diagnosed nine days into his hospital stay, but before he could be sent home, doctors wanted to ensure he was in stable condition. For four weeks of his stay, he was on “gut rest,” meaning he was unable to eat solid foods.

“It was pretty hard because I like snacks and stuff, especially when going through hard times,” said Mason, who is now 14. “I was getting shots and things, but I couldn’t eat anything; I couldn’t even drink water.”

Crohn’s disease is an inflammatory bowel disease that the National Institutes of Health estimates impacts half a million people throughout the United States. The Centers for Disease Control and Prevention reports that 1.3 percent of American adults — about 3 million people — are diagnosed with inflammatory bowel disease, meaning they have either a form of Crohn’s disease or ulcerative colitis.

“It’s really an isolating disease, and it’s a silent disease because you can’t tell if someone has Crohn’s or colitis just by looking at them,” she said.

While both conditions are chronic, Crohn’s disease most commonly affects the small intestine and the beginning of the colon, according to the Crohn’s and Colitis Foundation. Ulcerative colitis, however, only affects the rectum and the innermost lining of the colon, also known as the large intestine.

Because there isn’t a single diagnostic test for inflammatory bowel disease, many patients spend years either undiagnosed, misdiagnosed or untreated. A 2014 study published in the United European Gastroenterology journal found that about 10 percent of inflammatory bowel disease patients are misdiagnosed with irritable bowel syndrome, and about 3 percent spend at least five or more years before receiving the correct diagnosis.

There are several forms of inflammatory bowel diseases that can impact different parts of the digestive system in various ways, but some common symptoms include diarrhea, nausea, rectal bleeding, weight loss and mild to intense abdominal pain or cramps after eating.

Although inflammatory bowel diseases share some symptoms with irritable bowel syndrome, such as abdominal pain and nausea, there are some major differences. Unlike colitis or Crohn’s disease, IBS doesn’t cause inflammation, rarely causes hospitalization or surgery, and it does not increase the risk for colon cancer.

Inflammatory bowel diseases can cause someone to drastically alter their lifestyle, especially when they’re experiencing a flare-up of symptoms.

“Many patients know where every bathroom is anywhere they travel, any route they go on, because of that urgency,” said Cindie Barbera, the chapter’s deputy executive director.

Treating inflammatory bowel disease

Although there is not yet a cure for inflammatory bowel disease, it is possible to be in a state of remission by adhering to a treatment plan to reduce inflammation. That plan can involve various medications, avoiding trigger foods, eating foods that contain healthy fats and insoluble fiber.

In some cases, treatment for inflammatory bowel disease can require surgery, as was the case for former San Diego Chargers kicker Rolf Benirschke.

In 1979, as a 23-year-old during his second season playing professional football, Benirschke thought he had caught the flu from some of his teammates when his first symptoms of Crohn’s disease started. But when his symptoms persisted long after his teammates got better, his father — who was a physician — connected him with a gastroenterology specialist at UC San Diego.

When he was diagnosed with Crohn’s disease, Benirschke said he “continued to play and manage my illness as best I could, but there were not a lot of medical options” at the time.

Although he was taking two medications to stave off symptoms, he started to lose weight — about 20 pounds — and experienced a bad stomachache with bloody diarrhea throughout the season. After playing games on Sunday, he would be brought to the hospital to be fed intravenously throughout most of the week, then released on Saturdays to play with the team.

“If you look statistically at the 10 years that I played, it was really one of the better seasons of my career, but there could have been a footnote that said, ‘Young kicker is dying,’ ” Benirschke said.

During the off-season, he changed his diet and tried every possible treatment, including acupuncture and biofeedback, an alternative medicine approach that aims to teach people to have a greater awareness and control of their bodily functions.

But while flying home from New England a few games into his third season, Benirschke fainted on the plane. After landing, he was taken to the hospital, where he experienced a series of surgeries to remove his large intestine and install two ostomy bags.

Benirschke thought his career was over, but one of the Chargers coaches trained him during his recuperation. He rejoined the Chargers the following year, won the NFL Man of the Year award in 1983 and played until retiring from the league in 1987.

VISTA, CA – SEPTEMBER 26, 2023: Pages of a book about living with Crohn’s disease by Mason Harvey, 14, who has Crohn’s disease, and his mother, Michelle Harvey on Tuesday, September 26, 2023. (Hayne Palmour IV / For The San Diego Union-Tribune)

Although living with the disease has impacted him in many ways, Benirschke said it has also given his life meaning. For decades, he has been an advocate for bringing greater awareness of inflammatory bowel diseases, and has given other patients guidance, including Mason.

“I get the perspective now, looking back, and that illness changed my life,” he said. “Everything about me changed — who I am, what was important to me — it gave me a purpose, and ultimately, God turned it into just the richest life I could possibly have imagined.”

How caregivers can support loved ones with IBD

Caregiving for a loved one with colitis or Crohn’s disease demands not just patience and understanding, but also a deep well of empathy and knowledge to navigate the challenges of the care recipient’s complex condition.

The Crohn’s and Colitis Foundation offers support to patients and caregivers by providing educational resources, hosting support group meetings and raising funds for research into treatment options. The organization also offers Camp Oasis, a weeklong summer camp for children with medically stable Crohn’s disease or ulcerative colitis.

Michelle and Jason Harvey said connecting with the organization was vital to understanding the disease when their son was first diagnosed.

“In the very beginning it was tough, but I think reaching out and looking for support and talking about it helped,” Michelle said.

Some patient and caregiver teams — like Mason and his parents — find it helpful to keep a meal journal to track whether any foods trigger a flare-up of symptoms.

Today, Mason’s parents check his weight daily so they can be aware of any sudden drops. To ensure he is getting enough vitamins and nutrients, they make him a supplemental drink three times daily by mixing lactose-free milk with Carnation Instant Breakfast. Twice a month he receives biologics, medicines that help the immune system target inflammation-causing proteins.

Throughout Mason’s two-month hospitalization, Michelle and Jason rotated between staying in his room and sleeping in their car in the parking lot because pandemic protocols meant only one parent could be there at a time. Because he was unable to eat for a full month during that time, Mason starting drawing all the foods he looked forward to snacking on.

Those drawings eventually became the inspiration for “Not Your Average Slice of Pizza,” a children’s book that Mason and Michelle co-wrote about Crohn’s disease that they hope will help other children.

“You’re not alone with this disease, there’s a lot of other people out there and it’s different for everyone,” Mason said. “Someday you’re going to get into remission and everything’s gonna be fine.”

For more information about the nonprofit, call (619) 497-1300, email [email protected] or visit crohnscolitisfoundation.org/chapters/sandiego.