Young people with the disease often go undiagnosed
Imagine jolting awake from a deep sleep with a horrible pain in your stomach and running to the toilet just in time for a wave of blood and diarrhea to pass through your system … for two weeks straight.
Imagine the anxiety caused by an evening out with friends and family when you don’t know whether your digestive system will flare up at dinner. And imagine not knowing what triggers these painful flare-ups.
“It’s an invisible illness … people think it’s all in your head, especially if there are no outer symptoms,” says Frank J. Sileo, PhD, Crohn’s patient, psychologist and author of Toilet Paper Flowers: A Story for Children about Crohn’s. “It’s always with you, even when you feel well.”
Those who suffer with Crohn’s disease, a type of inflammatory bowel disease, all too commonly endure scenarios like these. They also have to deal with callous comments when their physical appearance begins to change because the disease is taking its toll.
“People can be so insensitive. … People have said to me, ‘I wish I had Crohn’s so I could be thin,’” says Sileo, 48, who has had Crohn’s since his 20s.
Crohn’s can affect any part of the gastrointestinal tract including the end of the small intestine, beginning of the colon and all layers of the intestines, according to the Crohn’s and Colitis Foundation of America. White blood cells infiltrate the intestinal lining and cause inflammation, which can lead to significant tissue damage.
After suffering with uncomfortable symptoms, Sileo says, “It came to a point where I was like, okay, I can’t live like this anymore.” He sought out a gastroenterologist and found out his symptoms were not caused by an upset stomach or stress due to the pursuit of his PhD. He had Crohn’s.
Before getting an official diagnosis, patients can endure symptoms such as diarrhea, stomach pain, rectal bleeding, vomiting and nausea for months or years. Many don’t know where to turn. They may have a tough time getting a diagnosis, because most of them have one thing in common: youth.
“Crohn’s can affect any age group, but it most commonly affects teenagers and young adults,” explains gastroenterologist Stephen Hanauer, MD, medical director of the Digestive Health Center at Northwestern Medicine.
The reason Crohn’s affects young patients is still unknown. But their age can make it difficult to nail down a diagnosis.
“It goes undiagnosed because the symptoms are confused for another problem, or they’re just young and healthy otherwise, so they ignore it,” says David Rubin, section chief of Gastroenterology, Hepatology and Nutrition and co-director of the Digestive Diseases Center at University of Chicago Medicine.
Because there are so many manifestations of digestive symptoms, such as reflux, gastritis, irritable bowel syndrome or a funky meal, it’s not uncommon to miss a diagnosis of Crohn’s. The key to identifying Crohn’s is the chronic inflammation of the gastrointestinal tract.
It’s an invisible illness … people think it’s all in your head, especially if there are no outer symptoms”
Once the diagnosis is received, the amount of mental relief experienced by many patients is immeasurable. “I just kept thinking, ‘Now it has a name,’” Sileo says.
Crohn’s is treated primarily with medications including anti-inflammatories, steroids, immunosuppressants, antibiotics and new biologic therapies designed to reduce inflammation and maintain remission. Sometimes surgery to resect/remove damaged parts of the bowels is necessary.
Treatments have advanced by leaps and bounds over the last decade or two.
“We’ve made tremendous progress,” Rubin says. Now, physicians can measure drug levels in the blood to optimize therapy—an approach called therapeutic drug monitoring—since they know that individuals metabolize drugs differently.
“The idea of doing therapeutic drug monitoring enables you to adjust doses of medicine, not only to make the medicine work better, but to keep the patient better, longer … that’s a very important advance in the field,” Rubin says.
Those advances mean that lifestyles have improved for people with Crohn’s. Ten years ago, patients could expect to have numerous, lengthy hospital stays. They also could expect uncertainty and not feeling well—in all of its incarnations, depending on what part of the digestive system was affected and on the progression of the disease before diagnosis. Now things are different, due to new medications that stop symptoms and maintain remission.
“Before these biologic therapies, we had an inpatient unit of 20 to 25 patients with inflammatory bowel disease,” Hanauer explains. “That’s down to a handful now.”
“We are still searching for a cure for Crohn’s, but treatments have advanced,” Hanauer says. “In the current era, when we treat someone with Crohn’s, they should expect to be in remission. They should expect to feel well and not to have significant problems that affect their life.”