Laura Splain was 22 when she felt the first, painful flare of Crohn’s disease. It was 1993, soon after the birth of her first daughter. Since then, she has had two surgeries, multiple ER visits, intestinal blockages, job losses, and a violent allergic reaction to a medication meant to help. She has also had another daughter and, with the help of caring family and medical providers, endured to tell her story.
“Crohn’s is so painful that it stops you in your tracks,” says the Lancaster County resident.
Crohn’s disease and the similar ulcerative colitis affect one in 200 Americans. Though rarely life-threatening, the effects can be devastating. Here are five things that everyone—patients, family, friends and co-workers—should know about Crohn’s disease.
What it is—and isn’t
Crohn’s belongs to a family of conditions called inflammatory bowel disorders, or IBDs. Crohn’s can inflame the lining of the intestine anywhere in its 25-foot journey through the body. Ulcerative colitis attacks only the colon.
The symptoms are similar, including diarrhea, rectal bleeding, cramps, anemia, and constipation, along with weight loss and fever. But Crohn’s disease is “very diverse” among patients, says Dr. Andrew Tinsley, of Penn State Hershey Medical Center (pennstatehershey.org). It appears in different parts of the body and can worsen to the point of tunneling from the bowel to other organs. In about 25 percent of cases, Crohn’s is genetic.
Diagnosis can be difficult, and symptoms can be subtle, creating delays in starting treatment, says Dr. Sunita Dachinger, with WellSpan Gastroenterology (wellspan.org) in York. Dr. Justin Harberson, of Lancaster Gastroenterology (lancastergi.com), says that Crohn’s is “truly like a puzzle.” Diagnosis requires thorough physical examinations, a range of tests and time with a doctor probing family and personal history.
“That office visit where you’re trying to solve a puzzle can’t be done in 10 minutes,” Harberson says.
Crohn’s strikes the young
Splain says she was “right in my prime” when Crohn’s struck.
“Crohn’s disease affects mainly young people during important times in their lives when they should be doing much more exciting things—going to college, finding partners in life,” says Tinsley.
Depression isn’t uncommon. “Patients with Crohn’s disease spend a certain amount of time sick, and that means they might lose a job,” says Dr. Daniel Connell, of Regional Gastroenterology Associates of Lancaster (rgal.com). “They can’t go to work. They cancel trips. They could get sick in an unexpected place far away from home. They may have side effects of their medications.”
One Crohn’s patient in five will also have other manifestations, such as arthritis, rashes and eye diseases, says Harberson. One patient endured fibromyalgia until his Crohn’s was properly treated. “It’s about having your eyes and ears open when you’re talking with the patient and going through a thoughtful problem-solving exercise.”
It’s not caused by lifestyle choices
“Evidence-based research says that any dietary restriction does not work as well as any medications have,” says Connell.
Doctors seem to agree that smoking and stress can cause flares, but alcohol doesn’t. Harberson warns patients that aspirin and NSAIDs such as ibuprofen can cause flares, and so can foods that are supposed to be healthy—fruits and vegetables, nuts, popcorn. “That high fiber swats the hornet’s nest,” he says.
There’s no cure
The anti-inflammatory mesalamine can help patients with mild to moderate Crohn’s, but it “doesn’t alter the natural course” of the disease, says Connell. Another option, immunomodulators, can help prevent or delay recurrence after surgery.
Newer biologics offer more help by blocking harmful molecules and controlling inflammations, but they require infusion or self-injection, with increased risks of lymphoma and infections. Prednisone can ease symptoms quickly but carries the drastic side effects of steroids.
Two-thirds of Crohn’s patients will require surgery at least once, reports the Centers for Disease Control. New approaches avert complications by delivering aggressive early treatment, even when symptoms are mild or absent. “In the past, we were treating people until they felt better,” says Tinsley, “but maybe they weren’t as well as we thought on the inside.”
Hope is on the horizon
A cure is not near, but research is progressing. Dachinger notes that “tremendous advances” include diagnosis through video endoscopy—a pill transmitting internal pictures of “subtle inflammatory changes.”
At Penn State Hershey’s Inflammatory Bowel Disease Center, a DNA “biobank” from more than 1,400 patients is yielding insights toward individualized, genetic-based treatments. It’s also possible that some patients may be able to join clinical trials there. “It’s really an exciting time,” Tinsley says.
Support matters
Trusting relationships with providers help patients manage daily lives, says Dachinger. “There’s oftentimes a reluctance to accept mentally what’s happening, and that leads to a delay in bringing attention to your provider. The more communication that exists, the earlier you can intervene and keep the patient productive and healthy.”
Harberson agrees “there are so many stoic people who tough out this disease.” Family, friends and co-workers “don’t tend to believe you. It’s not like someone can show you how torn up or twisted your intestine is. It’s harder to show how people suffer with it.”
Splain’s “awesome husband” of 17 years, Steve, has trekked to the hospital, fed the kids, and helped change bandages after surgery.
Splain believes that all Crohn’s patients deserve the same support. “When people with Crohn’s say they are in pain, they are in pain,” she says.
“They need that sympathy and compassion. It’s truly a suffering disease.”
