The intestines, sometimes called the bowel, can be injured in many different ways. The bowel may be infected by a wide variety of viruses, bacteria or parasites. It may be damaged by chemical poisoning, radiation exposure, surgery, physical injury or disturbances of its blood supply. Any of the above may cause acute or chronic inflammation.
In addition, there are other, mysterious diseases that attack the bowel wall, causing chronic intestinal inflammation and bringing misery and disability to hundreds of thousands of people throughout the world. These bewildering and stubborn illnesses of unknown cause are called inflammatory bowel disease.
What is IBD?
Inflammatory bowel disease is a name given to a group of chronic digestive diseases of the small and large intestines. Your doctor may refer to your particular condition by any one of several terms including colitis, proctitis, enteritis and ileitis. Most often, doctors divide IBD into two groups: ulcerative colitis and Crohn’s disease.
Ulcerative colitis causes ulcers and inflammation of the lining (mucosa) of the colon (large intestine). It almost always involves the rectum and usually causes a bloody diarrhea.
Crohn’s disease is an inflammation that extends into the deeper layers of the intestinal wall. The disease either is limited to one or more segments of the small intestine (30 percent), usually the ileum (ileitis), or involves both the ileum and the colon (ileocolitis) (50 percent). In the remaining 20 percent, Crohn’s disease is confined to the colon (Crohn’s colitis). Sometimes, inflammation may also affect the mouth, esophagus, stomach, duodenum, appendix or anus.
Both ulcerative colitis and Crohn’s disease are chronic conditions and may recur over a lifetime. On the other hand, many people will have long periods – sometimes years – when they will be free of symptoms. Unfortunately, doctors cannot predict with certainty when the disease will go into remission or when the symptoms will return.
What are the symptoms of IBD?
The most common symptoms of IBD are diarrhea and abdominal pain. Ulcerative colitis usually causes rectal bleeding as well. Crohn’s disease also may cause rectal bleeding, but less often than does ulcerative colitis. In either disease, inflammation, fever and bleeding may be serious and persistent, leading to weight loss and anemia (low red blood cell count). Children may also suffer stunted growth and delayed development.
What causes IBD?
There are many theories about what causes IBD, but none has been proven. The current leading theory suggests that some agent, possibly a virus or an atypical bacterium interacts with the body’s own immune defense system to trigger an inflammatory reaction in the intestinal wall. Although there is much scientific evidence that patients with IBD have abnormalities of the immune system, doctors do not know whether these abnormalities are a cause or a result of the disease. Doctors do believe, however, that there is little basis for the idea that Crohn’s disease and ulcerative colitis are caused by emotional distress or are the product of an unhappy childhood.
How common is IBD?
It is estimated that between 1 and 2 million Americans suffer from IBD. Men and women are affected about equally. Some people seem to be more likely targets for these diseases. For instance, IBD seems to be more common among Jews than non-Jews and more prevalent among whites than blacks, Orientals, Hispanics or Native Americans, although no population group is immune from attack. Also, the number of people who get Crohn’s disease has been increasing steadily over the last several decades. The incidence has, in the past, been highest in North America, the British Isles and northwestern Europe and Scandinavia. In recent years, an increase in frequency has been observed in developing nations throughout the rest of the world. Doctors cannot yet explain why these changes are occurring.
What is the effect of IBD in children?
Children who get IBD are apt to be more severely affected than adults. Their disease is often more widespread. Manifestations such as fever or anemia or complications such as joint involvement tend to be more prominent. Slowed growth and delayed sexual maturation are often problems. The impact of these chronic diseases on young patients and their families can be particularly cruel.
Does IBD run in families?
About 25 percent of people with Crohn’s disease or ulcerative colitis have a blood relative with some form of IBD, most often a brother or sister, and sometimes a parent or child. Studies have not yet answered the question of whether this tendency is due primarily to heredity or to environment. For patients with IBD who are considering having children, it is comforting to know that the overwhelming majority of pregnancies will result in normal children. Also, the normal course of pregnancy and delivery is usually not impaired by the presence of IBD in the mother.
How is IBD diagnosed?
Ulcerative colitis is usually relatively easy for the doctor to recognize. If bloody diarrhea is what caused you to go to the doctor’s office, the doctor will probably examine your rectum with an instrument called a flexible sigmoidoscope. In many instances the doctor will obtain a culture of the stool and order a colonoscopy or barium enema x-ray.
Crohn’s disease is not so easily diagnosed because the symptoms are not always so dramatic, and because the affected part of the intestine may not be within the easy reach of a sigmoidoscope. However, if you have experienced chronic abdominal pain, diarrhea, fever, weight loss and anemia, the doctor may examine you for signs of Crohn’s disease. The diagnosis can usually be established by a good medical history and a thorough X-ray examination of the digestive tract, including an upper gastrointestinal (GI) series, a careful small bowel study and a barium enema. More recently, capsule endoscopy has been found to be helpful in diagnosing IBD
Can IBD be cured?
No medicine has yet been found to cure Crohn’s disease or ulcerative colitis, but several drugs are helpful in controlling the disease processes and symptoms. Your doctor will work with you to find which treatments will work best for you.
Abdominal cramps and diarrhea may be alleviated by medication. One of these, sulfasalazine or its derivatives, often lessens the inflammation. More serious cases may require cortisone-related medication.
Some cases of IBD have improved with certain very potent anti-infective agents or with drugs that suppress the body’s immune system. These are relatively new treatments for IBD and, because they sometimes produce severe reactions, they are not used routinely. It is very important that you take only those medications your doctor has prescribed for you.
Can diet control IBD?
No special diet has been proven effective for preventing IBD or helping most IBD patients. Some patients find their symptoms are made worse by milk, alcohol, hot spices or roughage. But there are no hard and fast rules for the majoirity of IBD patients. Let your common sense tell you if you need to avoid any foods that seem to make your symptoms worse. Maintaining good general nutrition and adequate caloric intake is far more important than emphasizing or avoiding any particular food. Also, large doses of vitamins are useless and may even produce harmful side effects.
Your doctor may recommend nutritional supplements, especially for youngsters with growth retardation. Special high-caloric liquid formulas are sometimes used for this purpose. A small number of patients may need periods of intravenous feeding, a procedure called total parenteral nutrition (TPN) or hyperalimentation. These techniques can help patients who temporarily need extra nutrition, those whose bowels need to rest, or those whose bowels cannot absorb enough nourishment from food taken by mouth. Such techniques are not in themselves a cure for the disease.
Can surgery cure Ulcerative Colitis?
Surgery can cure ulcerative colitis. Although most patients cope effectively with this disease for many years, about one-third will eventually require the removal of the colon. In the standard form of this operation the entire colon and rectum are removed. A small opening (stoma) is made in the front of the abdominal wall and the tip of the lower small intestine (ileum) is then brought through. The stoma is fitted with a pouch to collect waste products. This external opening to the intestine is called an ileostomy.
Cosmetically more appealing options to this standard procedure have recently been developed. One such procedure is called an ileoanal anastomosis. During this procedure, the entire colon is removed but the anal sphincter and outer layer of the end of the rectum are left intact. The ileum (end of the small intestine) is then inserted inside the rectum and attached just above the anus. Because the rectal muscles are left intact, stool can be passed normally.
Your doctor will explain the possibilities and recommend which form of surgery is best for you.
Does surgery cure Crohn’s Disease?
Crohn’s disease can be helped by surgery, but it cannot be cured by surgery. The inflammation tends to return in areas of the intestine immediately next to the area that has been removed. Even so, about one-half of Crohn’s disease patients require surgery, either to provide relief from chronic disability or to correct specific complications.
What are the complications of IBD?
Most people with IBD never suffer from any complications, but some do. For example, dangerous complications may arise when severe ulcerative colitis is progressing rapidly, with ulceration extending deep into the bowel wall. In such cases, paralysis and distention of the colon (toxic dilatation), bleeding, perforation or peritonitis (inflammation of the lining of the abdominal cavity) may occur. These uncommon problems often require surgery.
If the disease is sufficiently widespread throughout the colon, and lasts for many years, patients with ulcerative colitis may be at increased risk of cancer of the colon or the rectum. Since these cancers have a more favorable outcome when caught in the early stages, patients should see their doctors for regular colon examinations.
Crohn’s disease affects deeper layers of the bowel wall than those affected by ulcerative colitis. It often involves the small intestine but frequently spares the rectum. For these reasons, frank rectal bleeding is less common in Crohn’s disease than in ulcerative colitis. Because of the tendency of Crohn’s disease to thicken the bowel wall with swelling and fibrous scar tissue, intestinal obstruction or “blockage” is the principal complication of long-standing cases. Crohn’s disease may also cause deep ulcer tracts to burrow all the way through the bowel wall into surrounding tissues, into adjacent segments of intestine, or into other nearby organs such as the urinary bladder or vagina. These abnormal tunnels or passageways between the inflamed intestine and adjoining tissues are called fistulas. They are a complication of Crohn’s disease and are often associated with pockets of infection or abscesses. The anus and rectum are particularly susceptible to these problems in Crohn’s disease, so that complicated fistulas or abscesses in this region are often a hallmark of the diagnosis. Fistulas can sometimes be treated with medication, but in many cases they must be treated surgically.
In addition to the damage IBD produces in and around the intestine, there are other complications that may affect more distant parts of the body. These systemic complications include various forms of arthritis, skin problems, inflammation in the eyes or mouth, kidney stones, gallstones or other diseases of the liver and biliary system. Some of these problems respond to the same treatment as the intestinal symptoms of IBD, but others require separate management.
Questions for the future
There are many questions about IBD that scientists have yet to answer. What is the cause of IBD? Why does the disease run in families? How does it spread or produce complications? What is the best treatment? These and other questions are being studied.
Researchers are already improving methods of diagnosis, identifying ways to detect early colorectal cancer and developing newer, safer and more effective medical and surgical therapies.
Suggestions for the newly diagnosed patient
You probably have many questions about your disease, your symptoms and your treatment that cannot be answered in this short fact sheet. You should seek this information from your doctor. You may find it useful to write down some of your questions and concerns before your next visit. This list will help you organize your thoughts and ensure that you obtain information you need.
Some symptoms of IBD, such as abdominal pain and diarrhea, can make you feel alone and isolated. Discussing concerns and trading coping tips with other IBD patients may be helpful. Knowing what to expect can help you explain your illness to family members and friends and can make living with the disease and its treatments a little more bearable.
Remember, most people with IBD continue to lead useful, productive lives. Between periods of disease activity, patients may feel quite well and remain relatively free of symptoms. Even though there may be long-term needs for medication, and even periods of hospitalization, most IBD patients hold productive jobs, marry, raise families and function successfully at home and in society.
What are sources for more information?
The National Foundation for Ileitis and Colitis distributes brochures on a wide variety of topics concerning IBD, including complications, pregnancy, diet and nutrition, government benefits and services, special problems in childhood and adolescence and emotional factors. The United Ostomy Association provides materials on surgical procedures, stoma care, sex for men and women with ostomies and many more topics. Both organizations also sponsor peer support groups.
For more information, check your telephone directory for local chapters or write: National Foundation for Ileitis and Colitis, 444 Park Ave. South, 11th Floor, New York, NY 10016; United Ostomy Association, 2001 West Beverly Blvd., Los Angeles, CA 90057.