Even 15 or 20 years ago hearing a diagnosis of Crohn's disease was bad news. Advances in treatment now mean that the disease is manageable and patients can live a normal life. It's no longer the death sentence it once was.
"There have been tremendous changes in the last decade," said Dr. Steven Kussin, author of "Doctor, Your Patient Will See You Now" and a former assistant professor of clinical medicine at Albert Einstein College of Medicine and Columbia Presbyterian, who remains board certified in internal medicine and gastroenterology. "New drugs have really revolutionized the care of Crohn's disease."
That doesn't mean there is a cure or that patients won't still experience symptoms or flares. But it does mean that they can lead a better quality life with less pain, fewer surgeries and a minimized impact on their social lives.
Defining Crohn's disease
Crohn's disease is a type of chronic inflammatory bowel disease that causes digestive track inflammation, leading to symptoms such as abdominal pain, severe diarrhea, and even malnutrition as a result, according to the Mayo Clinic. Other symptoms may include fever, loss of appetite, fatigue, weight loss, constipation, joint pain, liver inflammation, mouth ulcers, swollen gums and bloody stools.
In different patients, the disease can affect various areas of the colon or small intestine, though some types of the disease also can affect the large intestine or the mouth. Inflammation of the bowel wall, which can lead to scarring, also is possible. Though manageable, it can cause debilitating pain. In some cases, the incurable disease can cause life-threatening complications.
Many patients are able to manage the symptoms with treatment, and may be able to go long periods without flares ups of the disease. Symptoms can range from mild to severe.
A common complication is the obstruction of the intestine because of swelling from the formation of scar tissue, which results in the thickening of the bowel wall and a significantly narrowed intestinal passage, according to the Crohn's and Colitis Foundation of America. Deep ulcers in the intestinal tract called fistulas also are problematic for many with the disease.
One of the more serious risks associated with Crohn's disease is the heightened risk for small bowel or colon cancer, but the disease affects much more than just the colon and small intestine.
"It affects people from the tip of their tongue, down their intestinal tract and down to the anus, including the liver, skin and eyes," Dr. Kussin said."It's not only the colon."
There's not much people can do to prevent Crohn's disease since the cause is not known, though the condition is linked to problems with the body's immune system response. There are believed to be genetic factors and possibly environmental factors, but little else is known about what causes the disease. Those of Jewish descent and smokers may be at a higher risk of developing the disease however.
Crohn's is usually diagnosed through a colonoscopy and a biopsy. Blood work, x-rays and other tests may aid in a diagnosis however, since the disease can be tough to diagnose through only one test.
Living with Crohn's disease
In addition to medication, some patients may find that lifestyle changes help improve the quality of their lives and reduce the number of flare ups that they experience.
For most Crohn's patients, diet changes neither help nor make the disease worse. However, a handful are lactose or fructose intolerant, which could require some eating changes. Some patients also may make changes on their own after noticing that foods such as high fat or high fiber foods tend to upset their stomach.
"There's no real dietary limitation that's going to change the course of the disease," Dr. Kussin said.
There are a number of factors that may make the symptoms worse for patients already diagnosed with the disease. Patients should avoid smoking as smokers are more likely to have relapses, and need medication or therapy to treat the disease.
Stress also may contribute to flare ups because it causes the normal digestion process to change. Your stomach typically makes more acid while emptying the contents of the stomach more slowly with stress, which can be problematic for those that suffer from Crohn's.
Try managing stress through exercise to relieve stress and promote normal bowel function. Relaxation or breathing exercises may be helpful, or patients could try taking yoga or pilates classes that combine the exercise component with stress-relieving breathing.
Some patients also may benefit from attending support groups, or treating some of the symptoms with certain herbal supplements, fish oil, probiotics or even acupuncture since such therapies rarely have side effects. However, it's always recommended to speak with a physician before starting any herbal or natural treatment.
New treatments for Crohn's disease
The biggest change in treating Crohn's disease has been the addition of biologics, drugs given intravenously that have proved effective in aiding sufferers with their symptoms.
So far the U.S. Food and Drug Administration has approved only four biological agents. Tysabri (natalizumab), an integrin receptor antagonist blocks some types of white blood cells that play a role in inflammation.
The other three biologics are called anti- tumor necrosis factor (TNF) inhibitors that block a protein involved in inflammation. These include Cimzia (certolizumab), Humira (adalimumab), and Remicade (infliximab).
"These agents have really come into the forefront in the last 10 years," said Dr. Kussin. "Probably about 15 years ago one surgery would lead to another and another. Clearly the rate of surgery has gone down and the quality of life has gone up. With these newer agents a first surgery is less likely, and if patients do need a first surgery, they are less likely to need a second."
Some such as Humira can be administered through an injection at home for patients with moderate to severe symptoms. The main risk is that of serious infections, though most that are reported are simply colds or upper respiratory infections.
In addition to relief from symptoms for patients who have not responded well to other drugs, biologics often can send Crohn's into remission.
But for many patients, biologics aren't the first drug doctors reach for. Anti-inflammatory drugs such as corticosteroids are popular because they can help reduce inflammation anywhere in the body, but can come with undesirable side effects including unwanted facial hair, insomnia, night sweats and hyperactivity.
Some patients also are prescribed immune system suppressors such as popular drugs Azathioprine (Imuran) and Mercaptopurine (Purinethol), which require blood test follow ups to watch for side effects, including the risk of infections.
Doctors may prescribe other medications to treat symptoms including laxatives or anti-diarrheals, and most patients take at least one medication regularly with the brief addition of others during flare ups.
"Most need to be on something all the time to prevent the disease from becoming unmanageable," Dr. Kussin said.
Surgery to remove all or a portion of the colon or small intestine is an option in more severe cases though newer drugs have reduced the need for as many operations.
"When I started training in gastroenterology, a diagnosis of Crohn's disease was really bad news," Dr. Kussin said. "Now it's a manageable disease with therapy that has really been expanded in the last 10 years."