The intestines, sometimes called the bowels, can be injured in many different ways. The intestine 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 diseases that attack the bowel wall, causing chronic intestinal inflammation and bringing misery and disability to hundreds of thousands of people throughout the world.
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 anyone 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 is either limited to one or more segments of the small intestines (30%), usually the ileum (ileitis), or involves both the ileum and the colon (ileocolitis) (50%). In the remaining 20%, Crohn’s disease is confined to the colon (Crohn’s colitis). Sometimes, the inflammation may also effect the mouth, esophagus, stomach, duodenum, appendix, or anus.
Both ulcerative colitis and Crohn’s disease are chronic conditions and may recur. On the other hand, many people have long periods of time, 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 may cause rectal bleeding, but less often than 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 display delayed growth and development.
What Causes IBD?
There are many theories about what might IBD, but none has been proven. The current 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 and complications such as joint involvement tend to be more prominent. Stunted growth and delays in sexual maturation are often problems. The impact of these chronic disease on these young patients and their families can be particularly severe.
Does IBD Run In Families?
About 25% 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 is due to heredity or to the 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 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 easily diagnosed because the symptoms are not as dramatic, and because the affected part of the intestine may not be within easy reach of a sigmoidoscope. However, if you have experienced chronic abdominal pain, diarrhea, fever, weight loss and anemia, the doctor will examine you for Crohn’s disease. The diagnosis can be established by a good medical history and a thorough x-ray examination of the digestive tract, including an upper gastrointestinal (GI) series, a small bowel study, and a barium enema.
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. Your doctor will work with you to find treatments which will work for you.
Abdominal cramps and diarrhea may be alleviated by medication. Mesalamine or sulfasalazine, often decreases the inflammation. More serious cases may require cortisone-related medication.
Some patients with IBD have improved with anti-infective agents or 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.
Can Diet Control IBD?
No special diet has been proven to prevent IBD. Some patients find their symptoms are made worse by milk, alcohol, hot spices, or roughage. But there are no rules for the majority 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-calorie 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 hyper alimentation. These techniques can help patients who temporarily need extra nutrition, those whose bowels need to rest, or if the intestine cannot absorb enough nourishment from food taken by mouth. Such techniques are not 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, some will require 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 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.
More appealing options to this standard procedure have recently been developed, but they are controversial because they are prone to complications. One such procedure is called a continent ileostomy. In this operation, a pouch is created out of the ileum inside the wall of the lower abdomen. The pouch is emptied regularly through a valve on the outside of the abdomen and a small tube.
In an even newer operation, ileoanal anastomosis, only the diseased inner lining of the rectum is removed, leaving the outer muscle coats of the rectum intact. The ileum is then inserted inside the rectum (a procedure sometimes called a “pull-through”) 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. The most important thing to remember, however, is that removal of the colon and rectum provides a total and permanent cure for ulcerative colitis, regardless of the type of procedure performed.
Can 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 adjacent to the area that was been removed. Even so, about two-thirds of Crohn’s disease patients require surgery, either to provide relief from chronic disability or to correct specific complications. Unfortunately, neither the continent ileostomy nor the ileoanal anastomosis can be used in Crohn’s disease because of the likelihood of recurrence.
What Are The Complications Of IBD?
Many people with IBD never suffer from any complications. Dangerous complications may arise when 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 ulcerative colitis. It often involves the small intestine but frequently spares the rectum. For these reasons, 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 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 common 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 many must be drained 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 your questions and concerns before your next visit. This list will help you organize your thoughts and ensure that you obtain information you need. We at NVGC have an educational library of books and videotapes for your convenience.
Some symptoms of IBD, such as abdominal pain and diarrhea, can make you feel alone and isolated. Discussing problems 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 treatment 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 lleitis 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 children 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, write: National Foundation for Iieitis and Colitis, 444 Park Avenue South, 11th Floor, New York, NY 10016; United Ostomy Association, 2001 West Beverly Boulevard, Los Angeles, CA 90057.
Anemia. A condition in which the number of red blood cells, the amount of hemoglobin, and/or the volume of packed red blood cells is much less than normal. This is sometimes called a low red blood cell count.
Antidiarrheal. An agent that helps to control diarrhea. Examples include Lomotil and Imodium.
Antispasmodic. A drug that decreases some of the contractions of the smooth muscle of the small intestine or colon.
Barium enema. A diagnostic procedure in which x-rays are taken after barium sulfate is introduced into the patient by enema. The barium sulfate is opaque to x-rays and thus outlines the colon and rectum so that they show up clearly in the x-ray films.
Chronic. Of long duration, often for months, years or a lifetime.
Colitis. Inflammation of the colon.
Colonoscope. A long, flexible tube, with illumination by fiber optic light, or by video-computer chip technology.
Crohn’s colitis. Crohn’s disease that involves the colon.
Crohn’s disease. A chronic inflammatory disease that can affect any part of the GI tract, but most often affects the ileum and/or colon.
Enteritis. Inflammation of the intestine.
Fistula. An abnormal passageway between two internal organs or between an internal organ and the outside of the body. In patients with IBD, the connection can occur between two loops of the intestine or between the intestine and another structure such as the bladder, vagina, or skin. Fistulas are much more common in Crohn’s disease than in ulcerative colitis.
Hyper alimentation. A means of supplying extra nutrients, by either mouth or vein, for patients who have increased nutritional needs or decreased capacity to obtain nutrition naturally.
Ileitis. Inflammation of the ileum.
Ileocolitis. Inflammation of the ileum and colon.
Ileostomy. The surgical creation of an opening from the ileum to the surface of the body.
Ileum. The lowest part or end of the small intestine.
Intestinal obstruction. A blockage of the small or large intestine preventing the normal passage of intestinal contents. In Crohn’s disease, obstruction may be caused by narrowing of the intestine due to inflammation or scarring.
Intravenous feeding. The infusion of a solution through a vein in order to improve fluid, mineral, or nutritional intake.
Peer support group. A group of people having the same problems who gather to share information, experience, fears and tips, and to provide one another with emotional support.
Perforation. An abnormal hole in the wall of a hollow organ. Such a hole in the bowel wall can cause intestinal contents to enter the normally sterile abdominal cavity, causing peritonitis.
Peritonitis. Inflammation of the lining of the abdominal cavity (peritoneum,).
Proctitis. Inflammation of the rectum.
Proctoscope. A tube through which the interior of the rectum can be examined. It has a light designed to illuminate the interior wall of the rectum.
Sigmoidoscope. A flexible lighted tube used to took into the rectum and sigmoid colon.
Small bowel follow-through. A diagnostic procedure in which barium liquid is swallowed and observations can be made while x-rays are taken as the barium passes through the small intestine. (See upper GI series).
Small intestine. The longest part of the digestive tube, connecting the stomach to the colon. The small intestine, which is divided into the duodenum, jejunum, and ileum, is the organ responsible for most of the digestion and absorption of food.
Stoma. Any surgically created opening. In cases of intestinal disease, it usually denotes an opening created by bringing a portion of the small or large intestine to the surface of the abdominal wall.
Sulfasalzine. A medication combining a sulfa compound with a drug from the aspirin family.
Total parenteral nutrition (TPN). The feeding of a solution of nutrients through a catheter (tube) placed in a large vein. TPN is used to provide extra nutritional support for severely ill or malnourished patients, to rest the bowel, to prepare poorly nourished patients for surgery, and to restore poorly nourished patients after surgery.
Ulcer. An open sore on any surface such as the skin or the inner lining of the gastrointestinal tract.
Ulcerative colitis. A chronic, inflammatory disease of the lining of the large intestine (colon).
Upper GI series. A series of x-rays taken after the patient swallows a liquid containing barium. The barium liquid is opaque to x-rays and therefore helps to outline the upper GI tract.