HERSHEY, Pa. — Anyone newly diagnosed with Crohn’s disease likely has a lot of questions — and probably some anxiety — about having a chronic ailment for which there’s no cure.

“People hear that and they tend to panic,” said Dr. Matthew Coates, gastroenterologist at Penn State Health Milton S. Hershey Medical Center, home to a specialized center for patients with Crohn’s disease. “It’s important to get a proper diagnosis and see an experienced inflammatory bowel disease (IBD) provider, preferably at a center that specializes in caring for these conditions.”

IBD refers to two conditions — Crohn’s disease and ulcerative colitis — that are characterized by chronic inflammation of the gastrointestinal tract. Crohn’s disease usually rears its head in younger people, but it can pop up at any age and anywhere from the mouth to the anus, Coates said.

What are the symptoms?

First symptoms may include abdominal pain, diarrhea, weight loss and fatigue. People also experience nutritional deficiencies, anxiety and depression. Ongoing inflammation can lead to narrowing ― or strictures ― in the bowel that make it hard for food to pass through, as well as abscesses and fistulas, which are abnormal connections between the diseased areas and other parts of the body, Coates said. It’s also possible to develop skin rashes and problems with eyes or joints.

“A lot of our strategy is focused on keeping the disease under control and managing the disease activity and complications it’s known to cause,” Coates said.

How is it diagnosed?

Crohn’s disease can be hard to diagnose because the symptoms may be similar to several other conditions, such as irritable bowel syndrome, and can be missed or look like other conditions on imaging. Crohn’s disease involving deep small bowel disease can be hard to see even with an endoscopy, which can lead to misdiagnosis.

“There’s no single best test,” Coates said. “Diagnosis is usually based on a mix of symptoms, clinical findings during examination, and the results of stool tests, blood tests, endoscopies and imaging.”

What is available for treatment?

“A wide variety of treatments exist, which is why it’s so important to make sure your doctor carefully diagnoses and characterizes what type of Crohn’s disease you have, including the location, severity and types of complications,” Coates said. 

Since Crohn’s is an auto-immune disease, most treatments involve using a medicine that works by calming down the immune system. These include pills called immunomodulators or small molecules, and infusions or shots called biologics.

Small molecules are medicines that target particular aspects of the immune system. They represent some of the newest treatments in the Crohn’s treatment toolbox, Coates said. They have been FDA-approved for ulcerative colitis and are being studied for Crohn’s disease.

“This is a huge area of active investigation, and there are a large number of medications in the pipeline that are likely to be approved in the coming years,” Coates said. 

In regard to diet, there is some evidence that a low FODMAP diet can make IBD patients in remission less symptomatic, Coates said. FODMAP stands for fermentable oligosaccharides, disaccharides, monosaccharides and polyols, which are fermentable sugars found in lots of fruit and artificial sugars that the small intestine absorbs poorly. Some patients feel better consuming whole or unprocessed foods. However, Coates said studies have not yet shown that one diet is superior to another for actual disease control. 

What causes Crohn’s disease and why is the incidence of it rising?

Crohn’s disease is caused by an overactive immune system within the gastrointestinal tract. Many theories exist about why cases of IBD are increasing, including types of diet and lifestyle and environmental exposures. Cases also may be increasing simply because doctors are getting more adept at diagnosing it, Coates said.

“There is a genetic component, but genetics alone don’t mean you’ll develop IBD,” he said. “It takes a certain type of genetic background mixed with an environmental exposure, such as an infection or a change in the microbiome, or the fungi, bacteria and viruses that reside in the gastrointestinal tract.”

So, what’s the bottom line? How much will Crohn’s disease affect my life?

“We have medicines that work in a variety of different ways, and more therapies available to us today than ever before,” Coates said. “These are giving more people the possibility of gaining control over their disease process.”

Although Crohn’s disease can be challenging, especially during flare-ups, Coates said there is much to feel encouraged about for the future.

“Once patients get appropriate therapy, they can live a normal, healthy and happy life just like anyone else,” he said.

Related content:

• The Medical Minute: Biosimilars for your IBD? Nothing to fear here!
• The Medical Minute: It’s a bird…it’s a plane…it’s a colonoscopy

The Medical Minute is a weekly health news feature produced by Penn State Health. Articles feature the expertise of faculty, physicians and staff, and are designed to offer timely, relevant health information of interest to a broad audience.