As many as two million Americans - the majority between 20 and 40 years old - suffer from inflammatory bowel disease (IBD) in one of two forms. Crohn's disease which causes inflammation anywhere in the digestive tract, or ulcerative colitis characterized by severe ulcers only in the inner lining of the colon (large intestine) and rectum. These two diseases have much in common but seem to be two distinct ailments. This article will focus on Crohn's disease, what it is, and how it is treated.
What Causes Crohn's Disease?
Unfortunately, Crohn's disease is one of those medical mysteries that is still poorly understood. Even though much research has been done since 1937 when Crohn's was first described, medical science still does not know what causes it or how to avoid it. Many theories have come and gone. Currently the best guess is that Crohns is an "imbalance" of the immune system.
Normally the immune system is our protector - defending us against the daily attack of foreign agents such as the bacteria and viruses in our environment. The immune system is made up of antibodies and special white blood cells that circulate all through the blood stream - searching for these foreign particles and destroying them. This means that the immune system must be able to accurately tell the difference between our normal healthy cells and the invaders. In Crohn's, it seems that the immune system gets confused and begins attacking the good cells that make up the digestive system. Like "friendly fire," the immune system in Crohn's is fighing the wrong side and eventually the walls of the intestine become damaged.
Who Get It?
Crohn's disease affects both men and women alike. The specific cause remains unknown, but about 20% of cases involve some genetic or familial predisposition. Long considered most common in Jewish families, Crohn's now strikes every racial and ethnic group. All ages are susceptible, but the majority of patients are diagnosed as young adults.
Why Crohn's attacks one person and not another is also unknown. Some scientists believe, that this damage may be triggered by a hidden genetic susceptibility which is triggered by exposure to an unknown factor in the environment.... possibly a virus of some sort. So, when someone with the right genetic susceptibility is exposed to this presumed virus, the body's immune system goes off course and the process begins.
When my patients with Crohn's ask, "Why me?," I tell them it just bad luck. It is not due to something they did wrong. Although emotional stress can worsen the symptoms, don't believe that Crohn's is caused by stress or something in the diet. It's not. There is no way to predict Crohn's disease or prevent it. It's just bad luck.
What Are the Symptoms?
Once the immune system mistakenly begins its attack, the intestinal lining becomes inflammed and swelling occur. Eventually, the lining may break down and ulcers may form inside the small intestine or colon. This leads to the typical symptoms of diarrhea, abdominal pain (usually in the lower right abdomen), and weight loss. If the walls of the small intestine become too swollen the inner passage may become narrowed. This often leads causes crampy "gas" pains and vomiting due to intestinal obstruction or and symptons. If the ulcers also develop in the large intestine (colon) or rectum, the diarrhea may contain globs of white mucus and blood. Unlike ulcerative colitis, Crohns may occasionally cause inflammation in other parts of the digestive system such as the mouth, esophagus, stomach causing upper abdominal complaints. Usually symptoms of Crohn's disease occur gradually over time. Initially, they may come and go for weeks at a time.
How is Crohns Disease Diagnosed?
Crohn's disease takes many forms, and it often mistaken for other ailments. Some people have only vague symptoms such as weight loss, fatigue, fever, or night sweats. Most patients complain of abdominal pain and persistent diarrhea. These symptoms may develop slowly over time and initially may resemble other milder conditons such as irritable bowel syndrome, or spastic colon. The correct diagnosis may take some time. One clue is that people with irritable bowel syndrome hardly ever wake up at night to go to the bathroom; those with inflammatory bowel disease often do.
Whenever an individual consults their doctor with complaints of persistent diarrhea, weight loss, abdominal pain, fever, and anemia, inflammatory bowel disease should be suspected. The doctor will usually ask a series of questions about the medical history adn perform a physical exam.
In addition, the doctor may wish to order some laboratory tests to confirm Crohn's disease as the cause for the symptoms and to help exclude other illnesses that may cause the same symptoms. These tests may include a general series of blood and stool tests. The doctor may wish to examine the inner lining of your colon or rectum. This is done with a "scope" - a flexible lighted fiberoptic tube that has a tiny color video camera on one end. About the diameter of your index finger, this remarkable instrument allows the doctor to directly view the lining of the large intestine for ulceration. The shorter version of this test is called Fiberoptic Flexible Sigmoidoscopy (FFS). This simple test requires little preparation and only takes a few minutes to examine the last 2 feet of intestine. Colonoscopy is a more complete version of the same test. It allows the doctor to examine the entire 5 feet of colon and rectum. This exam allows a better view of the entire colon, but requires a more vigorous laxative preparation and is done under a light sedative to prevent discomfort.
Neither of these scope tests examine the small intestine. This is best done with x-rays using barium, a chalky substance which shows up white on x-ray film. This allows the doctor to look for inflammation, ulcers, or narrowing in the small intestine which is often part of Crohn's disease.
What is the Treatment?
Even though we have many ways to treat Crohn's disease, there is still no cure. Lacking a cure, the goals of therapy are to control inflammation in the intestine; to correct any nutritional deficiencies; and to reduce symptoms of pain, diarrhea, and bleeding. These symptoms may be helped by drugs.
For many years, Azulfidine was the main drug available for treatment of inflammatory bowel disease - particularly when the colon was involved. Azulfidine is usually well tolerated and can safely be used for as long as needed. A small percentage of patients are allergic, or develop side effects of rash, nausea, or headache and the medication can not be continued.
Patients who do not do well on Azulfidine often respond to relatled-drugs known as mesalamine or 5-ASA agents. These may include:
These drugs often lessen inflammation in the colon or small intestine and can be used safely for long periods of time. More serious cases may require more powerful drugs like
How About Diet?
Most patients believe that since Crohn's is a digestive disease that dietary restrictions must play a big role in therapy. That is not the case. So far, no special diet has been proven effective for preventingf or treating Crohn's disease. But every patient finds some foods that they tolerate poorly. Some people find that milk products may worsen their symptoms, while others can not tolerate spicy foods or those high in fiber. But, there are no hard and fast rules. Each case is different. We suggest that patients with Crohn's follow a good nutritious diet and avoid only those foods that reliably cause problems. Eating is one of the great pleasures of life and life is too short to live with unnessary restrictions. We feel that vitamin supplements make sense for all adults especially those with a digestive disorder. But, megadoses of vitamins, special herbal extracts, shark cartilage extracts, and other unproven therapies should be avoided.
Often the doctor will suggest a liquid nutritional supplement, especially for children with growth retardation. Special high-calories liquid formulas are sometimes used for this purpose. A small number of patient require special feedings through the vein. This is useful as a temporary nutritional boost and as a way to rest the bowels when the disease is active.
What are the Complications of Crohn's?
Many of my patients with Crohn's do quite well with their illness, take their medications, and are only seen for brief annual checkups. Others have more a more aggressive form of Crohn's and develop complications that must be dealt with. The most common complication is a blockage in the small intestine. Blockage occurs because the inflammation of Crohn's causes the bowel wall to swell and form scar tissue. Like a corroded pipe in an old house, the inner passage becomes narrowed. This usually requires surgery.
Crohn's disease is not cancer, but sometimes is acts like cancer by burrowing into surrounding tissues. These tunnel-like tracts are called fistulas and may be associated with pockets of infection called abscesses. Fistulas and may burrow into adjacent segments of intestine, into other organs such as the bladder, or vagina, or may come out through the skin of the abdominal wall. The area around the anus and rectum are often involved.
While Crohn's disease is primarily a digestive disease, it can occasionally affect other body systems. These non-intestinal complications may include various forms of arthritis, skin ulcers on the legs (pyoderma gangrenosum), kidney stones, gallstones, inflammation of the liver and bile ducts, and inflammation of the eyes and mouth. Some of these problems respond to the same treatment for the bowel symptoms, while others must be treated separately.
How About Surgery?
Unlike ulcerative colitis, there is no cure for Crohn's disease - not even surgery. In selected cases, Crohn's disease can be helped by removal of the affected area of intestine, but in most cases the inflammation tends to eventually return - usually right next to the area that has been removed. This is quite frustrating for the patient as well as the doctors. It is important for the patient and his family to be aware that surgery is not a cure for Crohn's disease, but rather a temporary reprieve. Also each operation sacrifices a portion of the small intestine - an important organ which extracts nutrition from the foods we eat. We are born with about twenty feet of small intestine which is more than we need. It is okay to lose a few feet of small intestine; but if multiple operations are needed over time, there may not be enough intestine left to digest the food properly. This is called the "short gut syndrome" and is a difficult situation to deal with. For all of these reasons, surgery is a used only as a last resort in Crohn's patients. Nonetheless, Crohn's is a lifelong illness and the majority of patients require surgery eventually. This may be done to relieve chronic symptoms of active disease that does not respond to medical therapy or to correct complications such as intestinal blockage, fistulas, abscesses, or severe bleeding. Drainage of abscesss or removal of a blocked segment of small intestine are the two most common procedures.
Living with Crohn's Disease Even though we currently have no cure for this ailment, most patients with Crohn's disease are able to live full and productive lives with treatment. In most cases, the symptoms tend to come and go over time. When the disease is active that is called an exacerbation. When the symptoms are well controlled, that is called a remission. During periods of remission, patients may feel quite well and be free of symptoms. They can hold productive jobs, marry and raise families, and function sucessfully at home and in society. When Crohn's does flare up, medication and dietary manipulation can help mimimize the symptoms until things quiet down.
How About Sex?
Sexuality is a big concern for all patients with Crohn's disease. During periods of remission, most patients can enjoy a healthy and satisfying physical relationship. During periods of disease activity, symptoms of abdominal crampy pain and diarrhea can certainly put a damper on passion. In severe cases, rectal or vaginal fistulas may make intercourse impossible. However, with a little creativity and a loving relationship, most couples can continue physical intimacy. Men may experience a low sperm count and decreased fertility when on Azulfidine. But this is a reversable situation and other newer formulations such as Asacol, Dipentum, and Pentasa can be substituted. Women will be happy to know that Crohn's disease need not prevent having children. While active disease can increase the risk of miscarriage and premature labor, most women are able to bear children and raise a family. Most women worry about passing the disease on to their children. However, 80% of cases of inflammatory bowel disease has no measurable genetic basis. Even when Crohn's does run in families, it is more often seen in distant relatives than in one's children or siblings.
What About the Future?
No one can predict the future, but medical scientists are optimistic about finding a cure for Crohn's disease. We are seeing major advances in our understanding of the immune system and much research is being done on new drugs to reduce inflammation. Hopefully we will see progress in the near future. Until then, patients with Crohn's disease can maximize their chances for a successful and healthy existence by establishing a good relationship with a doctor experienced in inflammatory bowel disease and faithfully following the prescribed treatment plan.
In my experience, the patients that do the best are those who insist on living as normal a life as possible. They take an active role in their treatment by learning as much as possible about Crohn's disease. They realize that this disease is not their fault and they don't punish themselves for being sick. They learn to effectively deal with stress, excercise regularly, and get plenty of rest. They are aware that any chronic illness can lead to feeling of anxiety and depression and seek help when necessary. They enjoy a healthy diet avoiding only those foods that predictably trigger a flare-up. They can adapt to new situations and accept the fact that they may have to have a few operations in their lifetime; but only consider this a temporary inconvenience. These attributes can greatly diminish the toll that Crohn's takes on one's quality of life.
For more information about inflammatory bowel disease or support groups in your area, contact the Crohn's and Colitis Foundation of America (CCFA), 444 Park Avenue South, 11th floor, New York, NY 10016-7374; 1-800-343-3637.
Patients who have or plan to have ostomy surgery can get information on local support groups by contacting the United Ostomy Association, 36 Executive Park, Suite 120, Irvine, CA 92714-6744; 1-800-826-0826