A Patient’s Guide to Crohn’s Disease

We’ve all had an upset belly at one time or another – after a bit too much junk food, for example – and have experienced cramping, bloating, nausea, pain or gas as a result. Such episodes typically don’t last very long – a couple days at most. But for some people, similar periods of upset stomach become a perpetual problem, and when this happens, they may be dealing with an autoimmune disorder called Crohn’s disease.

“Crohn’s disease is a type of inflammatory bowel disease, which means it causes inflammation in the lining of the gastrointestinal tract,” says Dr. Miguel Regueiro, chair of the department of gastroenterology, hepatology, and nutrition at Cleveland Clinic in Ohio. It’s often grouped together with another condition called ulcerative colitis under the umbrella of inflammatory bowel disease.

“Crohn’s disease can occur anywhere in the digestive tract from the mouth all the way down to the rectum or the anus,” Regueiro says. The inflammation can show up in patchy sections anywhere along the digestive tract and isn’t necessarily continuous in nature. By contrast, in cases of ulcerative colitis, the inflammation is confined to the large intestine and rectum. “The most common place (for Crohn’s disease to appear) is the small intestine.”

Although Crohn’s and colitis are often talked about together, “Crohn’s disease should not be confused with ulcerative colitis, which is another type of IBD,” says Dr. Niket Sonpal, a New York-based gastroenterologist and internist and adjunct professor at Touro College in New York. “The disease consists of inflammation throughout the gastrointestinal tract and reactions to different types of foods and substances.”

Crohn’s is an autoimmune disorder in which the body’s immune system, which is designed to protect the body from foreign infectious agents, gets confused and begins attacking the body’s own cells. “It’s an immune-mediated disease, meaning that our own body’s immune system begins to attack the intestine to cause this inflammation,” Regueiro says.

Causes

Crohn’s disease was first described in the 1930s, Sonpal says. “Early on we thought that it was caused by diet and stress. But as more research and observation has taken place in the nine decades since, doctors are still not able to pinpoint the exact cause of this disease. We do know, however, that diet and stress can exacerbate the symptoms of the disease.”

Regueiro says “current research has demonstrated that it is likely a variety of factors,” that may include:

“There is likely some environmental influences on the gastrointestinal tract,” he says. “We don’t know if it’s diet or something in the environment that leads to this trigger for the immune system to begin to attack itself,” but it seems likely that genetics also plays a role, given that some people develop the disease while others don’t. However, Regueiro says many gastroenterologists believe that environment is probably the biggest factor “because the microbiome and bacteria in the gut probably play a role, but we clearly know the immune system is attacking an otherwise normal intestine to cause these ulcers and this inflammation.”

Signs and Symptoms

“The most common symptoms related to Crohn’s disease are usually abdominal pain and diarrhea,” Regueiro says. “However, those are the most common symptoms. The disease can present in many different ways.”

Sonpal adds that “individual patients are affected by the disease differently. The pain they feel may be caused by different foods, their severity of the pain may differ and other symptoms like abdominal cramps, diarrhea, and rectal bleeding may vary in degree.”

The Mayo Clinic reports that common symptoms of Crohn’s include:

Regueiro says that if you’re concerned that you might be dealing with a case of Crohn’s disease you should see your doctor. Particularly if you’ve had diarrhea and abdominal pain that’s lasted more than a few days, seek help. And if you’ve experienced any “alarm symptoms” those should send you immediately to seek medical attention. These symptoms would include abdominal pain and diarrhea lasting longer than a week, especially when such is associated with weight loss. “If there’s bleeding or fevers, though would be things we want someone to seek medical attention for,” Regueiro says.

Risk Factors

Although Crohn’s disease can be diagnosed in anyone at any age, it tends to be more common in adults. The Centers for Disease Control and Prevention reports that an estimated 3 million adults in America – about 1.3 percent of adults – had either Crohn’s disease or ulcerative colitis. Sonpal notes that studies vary in their estimation of the number of people in the U.S. with Crohn’s but it’s likely anywhere from 700,000 to 1.5 million.

The Mayo Clinic reports that some risk factors appear to be associated with a higher chance of developing Crohn’s disease, including:

People with Crohn’s and colitis are also more likely to have other chronic health conditions as well, including:

Diagnosis

The Crohn’s and Colitis Foundation reports that “a variety of tests are used to diagnose and monitor Crohn’s disease and ulcerative colitis, the two main types of inflammatory bowel disease. Procedures range from simple blood tests to barium X-rays and colonoscopy, which require preparation the day before the tests. A proper diagnosis of IBD involves determining the disease type (Crohn’s disease or ulcerative colitis), extent and severity of disease, and any related complications.”

Most patients with Crohn’s begin by seeking help from a primary care provider and may be referred for additional testing and treatment by a gastroenterologist. “Initially it’s very reasonable to start with the primary care doctor who will examine the patient and get blood work, which is a very good first step to get an understanding whether the patient has anemia or if there’s inflammation in the body,” Regueiro says. Your primary care provider will also likely check for infections, because “sometimes gut infections or gastrointestinal infections can be present with some of these same symptoms.”

Your doctor may order several different kinds of texts to determine whether your symptoms are being caused by Crohn’s or another condition. These tests may include imaging studies:

You’ll also likely be offered some additional lab work to determine the extent of the inflammatory response you’re having. These tests may include:

Because symptoms of Crohn’s are often associated with other digestive disorders, making a diagnosis isn’t always easy. Regueiro says that often, the initial diagnosis is irritable bowel syndrome, which is a more common condition that has similar symptoms – diarrhea, pain or constipation. “Stress and diet play a role, but IBS doesn’t have inflammation. Many people with Crohn’s will come in with diarrhea and pain will be told its irritable bowel, but later on as they lose weight or the blood test becomes abnormal or as more severe symptoms arise then a colonoscopy shows they have Crohn’s disease,” Regueiro says.

Complications

Because Crohn’s disease is a chronic, inflammatory disease, symptoms can progress over time and complications can arise. Particularly for those patients who have Crohn’s in the small intestine over time, that recurrent inflammation can lead to the development of scarring and intestinal strictures, which is a narrowing of the intestine. “The diameter of the bowel gets very narrow and food will get caught. That can lead to a bowel obstruction,” Regueiro says. In severe cases, people with intestinal strictures or bowel obstructions may need surgery to correct the problem.

Other complications that your doctor will look for are ulcers and fistulas. Ulcers are sores that develop inside the digestive tract. They can be very painful and become infected. Some people also develop fistulas, which is a form of penetrating inflammation. “The inflammation goes through the lining, through the bowel wall,” and it can become infected. As these ulcers or fistulas grow, some people may experience bowel perforations, or ruptures, in which the bowel wall tears. This can be a life-threatening complication that usually requires surgery to correct.

Malnutrition can also develop if you’re unable to absorb enough nutrients from the food you eat because of symptoms like pain and diarrhea. The presence of fistulas in the bowel can reduce your ability to absorb nutrients from food.

Having Crohn’s disease also raises your chances of developing colorectal cancer, so your doctor may advise you to begin screening for colon cancer earlier than age 50 which is when most people without Crohn’s are advised to get their first colonoscopy.

Treatment

“The most common treatment approach is some type of medication,” Regueiro says. Although there is still no cure, he says the medications that are available now are much better than they were even just 10 years ago. “We have a lot of new medicines that are targeted at parts of the immune system that control the inflammation. These are what we call biologic medicines or biologically active medicines,” and they can bring down the level of inflammation in the body and reduce your experience of symptoms.

“Depending on your case a doctor might treat your disease with anti-inflammatory medication to reduce inflammation, steroids, immunosuppressant medication to reduce your body's response in attacking cells in the GI tract and sometimes antibiotics to stop any harmful bacteria from growing,” Sonpal says.

Medications used to treat Crohn’s typically fall into one of the following categories:

Health Care Providers That Treat Crohn's Disease

Diet

Because some doctors think that diet plays a role in the development of Crohn’s your health care provider may include diet as part of your treatment protocol. “Depending on your individual case, your specialist might go over a nutrition plan to help you avoid foods and substances that aggravate your condition. Individuals with this disease are affected differently so this is something you have to assess with your specialist,” Sonpal says.

Some doctors recommend avoiding:

On the other hand, eating easy to digest foods such as rice, potatoes and oatmeal may help soothe an inflamed gut. Diets rich in cooked (baked or steamed) fruits and vegetables, eggs and fish may also be indicated as good options for people with Crohn’s disease, but it’s important to talk with our doctor about what’s best for your situation.

Management

“Crohn’s is a chronic disease for which we have no cure at the moment,” Sonpal says. Therefore, “patients must assess the severity of their condition with their doctor in order to learn how to manage their symptoms. This condition presents challenges that can stress patients out, but it is possible to lead an active and happy life while dealing with Crohn’s. Be patient with your body and system and know that there will be days when your symptoms flare up but with proper treatment, you can manage the disease.”

Regueiro agrees that you can live a relatively normal life with Crohn’s, but that it’s important to work with your doctor to achieve and maintain remission of symptoms. “This shouldn’t be a disease with a stigma attached to it. In the past, people often would not talk about their diagnosis or their disease out of embarrassment or social isolation.” But as awareness of the disease’s prevalence increases, managing it becomes easier. “Getting patients to the right doctors and health care providers is really important. Realizing it’s probably more common than we think and it's more treatable than it ever has been before” is important, he says.