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9. Inflammatory Bowel Diseases


Summary

This chapter discusses the epidemiology and impact of the two most important chronic inflammatory bowel diseases (IBD’s): ulcerative colitis and Crohn’s disease. These two diseases have somewhat different epidemiologies, clinical presentations, and courses, but they frequently are considered together because of their devastating effects on the gastrointestinal tract, obscure etiology, chronicity, and relatively unsatisfactory response to therapy. The etiology and pathogenesis of these diseases are not clear. Several diagnostic criteria have been proposed to distinguish Crohn’s disease and ulcerative colitis from other, usually infectious, causes of intestinal inflammation and from each other. No set of criteria has been universally accepted, and identification of cases for epidemiologic studies remains difficult.

IBD’s affect between 0. 1 and 0.2 percent of the U.S. population or as many as 500,000 people. Relatively equal numbers of persons with Crohn’s disease or ulcerative colitis appear to be affected. The incidence of each has varied markedly throughout the world and over time. In recent decades, the incidence of Crohn’s disease has risen but at present has leveled off; in contrast, the incidence of ulcerative colitis has remained relatively steady. Incidence rates in the United States for each disease range between 2 and 6 per 100,000 population per year. For both diseases, a peak age of onset in young adulthood and perhaps a subsequent rise in incidence after age 65 years is evident. IBD’s have a strong predilection for northern latitudes and perhaps for Caucasians, but racial and ethnic differences have been inadequately examined.

Women have a slightly higher risk for IBD than men. Both conditions show familial aggregation, but both genetic and environmental attributes have been implicated in their etiology. The most consistently observed risk factor for IBD has been smoking, which is associated with an increased risk of Crohn’s disease and a lower risk of ulcerative colitis. Surprisingly little substantial evidence for dietary risk factors has emerged, but more for Crohn’s disease than ulcerative colitis. Infant and childhood events, notably childhood illness and a lack of breastfeeding, are promising as potentially predisposing factors for subsequent immunologic abnormalities.

About 700,000 visits to physicians for IBD and 100,000 hospital discharges (64 percent for Crohn’s disease) occur each year. Persons with either disease are at increased risk of colon cancer and extraintestinal diseases such as ankylosing spondylitis. Persons with ulcerative colitis are at high risk of primary sclerosing cholangitis, a potentially fatal liver disease. Mortality has dropped markedly for IBD to fewer than 1,000 persons per year. The research needs are many, but epidemiologic studies defining risk factors and high risk groups would be instructive.

Diagnosis

The initial symptoms of IBD are often explosive but can be insidious. The most prominent symptom among ulcerative colitis patients is blood in the stool. Ulcerative colitis symptoms also may include periodic diarrhea, abdominal cramps with pain, and weight loss. About 35 percent of ulcerative colitis patients have symptoms confined to the rectum and thus have a condition that is more appropriately called ulcerative proctitis. About 90 percent of Crohn’s disease patients present with three persistent and progressive symptoms: weight loss, abdominal pain, and diarrhea. Crohn’s disease also may first manifest itself by intestinal obstruction, perforation, abscess, bleeding, or peritonitis. The proportion of patients with only small bowel involvement varies from 20 to 70 percent.

Of the features needed for making a swift diagnosis of lBD, symptoms or clinical features unique to these diseases are the most lacking. No definitive clinical findings or laboratory determinations can as yet be used as the sole basis of a certain diagnosis. First, IBD must be separated from other diseases with similar symptoms, such as infectious diarrheal diseases. A history of foreign travel, positive stool cultures, stool studies of parasites and ova, and recent antibiotic therapy that could explain diarrhea are important steps to take in establishing a diagnosis. Unfortunately, this process has been and continues to be largely one of exclusion.

Having established that other diagnoses do not explain symptoms, separating ulcerative colitis from Crohn’s disease is the second step in establishing diagnosis. Features that are helpful in distinguishing these two conditions include frequent stools with bleeding and mucus and the presence of ulcers, ulcerative colitis; pain, wasting, extracolonic involvement, segmental changes, stenosis, and dilatation as well as giant cell noncaseating granulomas favor Crohn’s disease. However, Crohn’s disease without small intestine or extradigestive tract involvement can be difficult to distinguish from ulcerative colitis. The most helpful feature of Crohn’s disease that distinguishes it from ulcerative colitis is noncaseating granulomas. Even with this histologic feature, a diagnosis can be made only with a certain degree of probability. For all these reasons, the diagnosis of IBD may be a frustrating experience for patients that often requires many months.

v Ulcerative Colitis

Ulcerative colitis is a disease that causes inflammation and sores, called ulcers, in the lining of the large intestine. The inflammation usually occurs in the rectum and lower part of the colon, but it may affect the entire colon. Ulcerative colitis rarely affects the small intestine except for the end section, called the terminal ileum. Ulcerative colitis may also be called colitis or proctitis.

The inflammation makes the colon empty frequently, causing diarrhea. Ulcers form in places where the inflammation has killed the cells lining the colon; the ulcers bleed and produce pus.
Ulcerative colitis is an inflammatory bowel disease (IBD), the general name for diseases that cause inflammation in the small intestine and colon. Ulcerative colitis can be difficult to diagnose because its symptoms are similar to other intestinal disorders and to another type of IBD called 

Crohn’s disease. Crohn’s disease differs from ulcerative colitis because it causes inflammation deeper within the intestinal wall. Also, Crohn’s disease usually occurs in the small intestine, although it can also occur in the mouth, esophagus, stomach, duodenum, large intestine, appendix, and anus.

Ulcerative colitis may occur in people of any age, but most often it starts between ages 15 and 30, or less frequently between ages 50 and 70. Children and adolescents sometimes develop the disease. Ulcerative colitis affects men and women equally and appears to run in some families.

What causes ulcerative colitis?

Theories about what causes ulcerative colitis abound, but none have been proven. The most popular theory is that the body’s immune system reacts to a virus or a bacterium by causing ongoing inflammation in the intestinal wall.

People with ulcerative colitis have abnormalities of the immune system, but doctors do not know whether these abnormalities are a cause or a result of the disease. Ulcerative colitis is not caused by emotional distress or sensitivity to certain foods or food products, but these factors may trigger symptoms in some people.

What are the symptoms of ulcerative colitis? 

The most common symptoms of ulcerative colitis are abdominal pain and bloody diarrhea. Patients also may experience

fatigue
weight loss
loss of appetite
rectal bleeding
loss of body fluids and nutrients

About half of patients have mild symptoms. Others suffer frequent fever, bloody diarrhea, nausea, and severe abdominal cramps. Ulcerative colitis may also cause problems such as arthritis, inflammation of the eye, liver disease (hepatitis, cirrhosis, and primary sclerosing cholangitis), osteoporosis, skin rashes, and anemia. No one knows for sure why problems occur outside the colon. Scientists think these complications may occur when the immune system triggers inflammation in other parts of the body. Some of these problems go away when the colitis is treated.

How is ulcerative colitis diagnosed?

A thorough physical exam and a series of tests may be required to diagnose ulcerative colitis.
Blood tests may be done to check for anemia, which could indicate bleeding in the colon or rectum. Blood tests may also uncover a high white blood cell count, which is a sign of inflammation somewhere in the body. By testing a stool sample, the doctor can detect bleeding or infection in the colon or rectum.

The doctor may do a colonoscopy or sigmoidoscopy. For either test, the doctor inserts an endoscope—a long, flexible, lighted tube connected to a computer and TV monitor—into the anus to see the inside of the colon and rectum. The doctor will be able to see any inflammation, bleeding, or ulcers on the colon wall. During the exam, the doctor may do a biopsy, which involves taking a sample of tissue from the lining of the colon to view with a microscope. A barium enema x ray of the colon may also be required. This procedure involves filling the colon with barium, a chalky white solution. The barium shows up white on x ray film, allowing the doctor a clear view of the colon, including any ulcers or other abnormalities that might be there.

What is the treatment for ulcerative colitis?

Treatment for ulcerative colitis depends on the seriousness of the disease. Most people are treated with medication. In severe cases, a patient may need surgery to remove the diseased colon. Surgery is the only cure for ulcerative colitis.

Some people whose symptoms are triggered by certain foods are able to control the symptoms by avoiding foods that upset their intestines, like highly seasoned foods, raw fruits and vegetables, or milk sugar (lactose). Each person may experience ulcerative colitis differently, so treatment is adjusted for each individual. Emotional and psychological support is important.

Some people have remissions—periods when the symptoms go away—that last for months or even years. However, most patients’ symptoms eventually return. This changing pattern of the disease means one cannot always tell when a treatment has helped.
Some people with ulcerative colitis may need medical care for some time, with regular doctor visits to monitor the condition.

Drug Therapy

The goal of therapy is to induce and maintain remission, and to improve the quality of life for people with ulcerative colitis. Several types of drugs are available.

Aminosalicylates, drugs that contain 5-aminosalicyclic acid (5-ASA), help control inflammation. Sulfasalazine is a combination of sulfapyridine and 5-ASA and is used to induce and maintain remission. The sulfapyridine component carries the anti-inflammatory 5-ASA to the intestine. However, sulfapyridine may lead to side effects such as include nausea, vomiting, heartburn, diarrhea, and headache. Other 5-ASA agents such as olsalazine, mesalamine, and balsalazide, have a different carrier, offer fewer side effects, and may be used by people who cannot take sulfasalazine. 5-ASAs are given orally, through an enema, or in a suppository, depending on the location of the inflammation in the colon. Most people with mild or moderate ulcerative colitis are treated with this group of drugs first.

Corticosteroids such as prednisone and hydrocortisone also reduce inflammation. They may be used by people who have moderate to severe ulcerative colitis or who do not respond to 5-ASA drugs. Corticosteroids, also known as steroids, can be given orally, intravenously, through an enema, or in a suppository, depending on the location of the inflammation. These drugs can cause side effects such as weight gain, acne, facial hair, hypertension, mood swings, and an increased risk of infection. For this reason, they are not recommended for long-term use.

Immunomodulators such as azathioprine and 6-mercapto-purine (6-MP) reduce inflammation by affecting the immune system. They are used for patients who have not responded to 5-ASAs or corticosteroids or who are dependent on corticosteroids. However, immunomodulators are slow-acting and may take up to 6 months before the full benefit is seen. Patients taking these drugs are monitored for complications including pancreatitis and hepatitis, a reduced white blood cell count, and an increased risk of infection. Cyclosporine A may be used with 6-MP or azathioprine to treat active, severe ulcerative colitis in people who do not respond to intravenous corticosteroids.

Other drugs may be given to relax the patient or to relieve pain, diarrhea, or infection.

Hospitalization

Occasionally, symptoms are severe enough that the person must be hospitalized. For example, a person may have severe bleeding or severe diarrhea that causes dehydration. In such cases the doctor will try to stop diarrhea and loss of blood, fluids, and mineral salts. The patient may need a special diet, feeding through a vein, medications, or sometimes surgery.

Surgery

About 25 percent to 40 percent of ulcerative colitis patients must eventually have their colons removed because of massive bleeding, severe illness, rupture of the colon, or risk of cancer. Sometimes the doctor will recommend removing the colon if medical treatment fails or if the side effects of corticosteroids or other drugs threaten the patient’s health. 

Surgery to remove the colon and rectum, known as proctocolectomy, is followed by one of the following:

Ileostomy, in which the surgeon creates a small opening in the abdomen, called a stoma, and attaches the end of the small intestine, called the ileum, to it. Waste will travel through the small intestine and exit the body through the stoma. The stoma is about the size of a quarter and is usually located in the lower right part of the abdomen near the beltline. A pouch is worn over the opening to collect waste, and the patient empties the pouch as needed.

Ileoanal anastomosis, or pull-through operation, which allows the patient to have normal bowel movements because it preserves part of the anus. In this operation, the surgeon removes the diseased part of the colon and the inside of the rectum, leaving the outer muscles of the rectum. The surgeon then attaches the ileum to the inside of the rectum and the anus, creating a pouch. Waste is stored in the pouch and passed through the anus in the usual manner. Bowel movements may be more frequent and watery than before the procedure. Inflammation of the pouch (pouchitis) is a possible complication.

Not every operation is appropriate for every person. Which surgery to have depends on the severity of the disease and the patient’s needs, expectations, and lifestyle. People faced with this decision should get as much information as possible by talking to their doctors, to nurses who work with colon surgery patients (enterostomal therapists), and to other colon surgery patients. Patient advocacy organizations can direct people to support groups and other information resources. (See For more information for the names of such organizations.) 

Most people with ulcerative colitis will never need to have surgery. If surgery does become necessary, however, some people find comfort in knowing that after the surgery, the colitis is cured and most people go on to live normal, active lives.

Research

Researchers are always looking for new treatments for ulcerative colitis. Therapies that are being tested for usefulness in treating the disease include

Biologic agents. These include monoclonal antibodies, interferons, and other molecules made by living organisms. Researchers modify these drugs to act specifically but with decreased side effects, and are studying their effects in people with ulcerative colitis.

Budesonide. This corticosteroid may be nearly as effective as prednisone in treating mild ulcerative colitis, and it has fewer side effects.

Heparin. Researchers are examining whether the anticoagulant heparin can help control colitis.

Nicotine. In an early study, symptoms improved in some patients who were given nicotine through a patch or an enema. (This use of nicotine is still experimental—the findings do not mean that people should go out and buy nicotine patches or start smoking.)

Omega-3 fatty acids. These compounds, naturally found in fish oils, may benefit people with ulcerative colitis by interfering with the inflammatory process.

Is colon cancer a concern?

About 5 percent of people with ulcerative colitis develop colon cancer. The risk of cancer increases with the duration and the extent of involvement of the colon. For example, if only the lower colon and rectum are involved, the risk of cancer is no higher than normal. However, if the entire colon is involved, the risk of cancer may be as much as 32 times the normal rate.
Sometimes precancerous changes occur in the cells lining the colon. These changes are called “dysplasia.” People who have dysplasia are more likely to develop cancer than those who do not. Doctors look for signs of dysplasia when doing a colonoscopy or sigmoidoscopy and when examining tissue removed during the test.

According to the 2002 updated guidelines for colon cancer screening, people who have had IBD throughout their colon for at least 8 years and those who have had IBD in only the left colon for 12 to 15 years should have a colonoscopy with biopsies every 1 to 2 years to check for dysplasia. Such screening has not been proven to reduce the risk of colon cancer, but it may help identify cancer early should it develop. These guidelines were produced by an independent expert panel and endorsed by numerous organizations, including the American Cancer Society, the American College of Gastroenterology, the American Society of Colon and Rectal Surgeons, and the Crohn’s & Colitis Foundation of America Inc., among others.

Hope Through Research

NIDDK, through the Division of Digestive Diseases and Nutrition, conducts and supports research into many kinds of digestive disorders, including ulcerative colitis. Researchers are studying how and why the immune system is activated, how it damages the colon, and the processes involved in healing. Through this increased understanding, new and more specific therapies can be developed.

v Collagenous Colitis and Lymphocytic Colitis

Inflammatory bowel disease is a general name for diseases that cause inflammation in the intestines. Collagenous colitis and lymphocytic colitis are two types of bowel inflammation that affect the colon (large intestine). They are not related to Crohn’s disease or ulcerative colitis, which are more severe forms of inflammatory bowel disease (IBD).

Collagenous colitis and lymphocytic colitis are referred to as microscopic colitis because colonoscopy usually shows no signs of inflammation on the surface of the colon. Instead, tissue samples from the colon must be examined under a microscope to make the diagnosis.
No precise cause has been found for collagenous colitis or lymphocytic colitis. Possible causes of damage to the lining of the colon are bacteria and their toxins, viruses, or nonsteroidal anti-inflammatory drugs (NSAIDs). Some researchers have suggested that collagenous colitis and lymphocytic colitis result from an autoimmune response, which means that the body’s immune system destroys cells for no known reason.

Symptoms

The symptoms of collagenous colitis and lymphocytic colitis are similar—chronic watery, nonbloody diarrhea. The diarrhea may be continuous or episodic. Abdominal pain or cramps may also be present.

Diagnosis

The diagnosis of collagenous colitis or lymphocytic colitis is made after tissue samples taken during colonoscopy or flexible sigmoidoscopy are examined under a microscope. Collagenous colitis is characterized by a larger-than-normal band of protein called collagen inside the lining of the colon. The thickness of the band varies, so multiple tissue samples from different areas of the colon may need to be examined. In lymphocytic colitis, tissue samples show inflammation with white blood cells known as lymphocytes between the cells that line the colon, and in contrast to collagenous colitis, there is no abnormality of the collagen.

People with collagenous colitis are most often diagnosed in their 50s, although some cases have been reported in adults younger than 45 years and in children aged 5 to 12. It is diagnosed more frequently in women than men. 

People with lymphocytic colitis are also generally diagnosed in their 50s. Both men and women are equally affected.

Treatment

Treatment for collagenous colitis and lymphocytic colitis varies depending on the symptoms and severity of the cases. The diseases have been known to resolve spontaneously, but most patients have recurrent symptoms.

Lifestyle changes aimed at improving diarrhea are usually tried first. Recommended changes include reducing the amount of fat in the diet, eliminating foods that contain caffeine or lactose, and not using NSAIDs.

If lifestyle changes alone are not enough, medications are often used to control the symptoms of collagenous colitis and lymphocytic colitis.

Antidiarrheal medications such as bismuth subsalicylate and bulking agents reduce diarrhea.

Antiinflammatory medications, such as mesalamine, sulfasalazine, and steroids including budesonide, reduce inflammation.

Immunosuppressive agents, which reduce the autoimmune response, are rarely needed.

For very extreme cases of collagenous colitis and lymphocytic colitis, bypass of the colon or surgery to remove all or part of the colon has been done in a few patients. This is rarely recommended.

Collagenous colitis and lymphocytic colitis do not increase the risk of colon cancer.

v Crohn’s Disease

Crohn’s disease causes inflammation in the small intestine. Crohn’s disease usually occurs in the lower part of the small intestine, called the ileum, but it can affect any part of the digestive tract, from the mouth to the anus. The inflammation extends deep into the lining of the affected organ. The inflammation can cause pain and can make the intestines empty frequently, resulting in diarrhea. 

Crohn’s disease is an inflammatory bowel disease (IBD), the general name for diseases that cause inflammation in the intestines. Crohn’s disease can be difficult to diagnose because its symptoms are similar to other intestinal disorders such as irritable bowel syndrome and to another type of IBD called ulcerative colitis. Ulcerative colitis causes inflammation and ulcers in the top layer of the lining of the large intestine.

Crohn’s disease affects men and women equally and seems to run in some families. About 20 percent of people with Crohn’s disease have a blood relative with some form of IBD, most often a brother or sister and sometimes a parent or child.

Crohn’s disease may also be called ileitis or enteritis.

What causes Crohn’s disease?

Theories about what causes Crohn’s disease abound, but none has been proven. The most popular theory is that the body’s immune system reacts to a virus or a bacterium by causing ongoing inflammation in the intestine.

People with Crohn’s disease tend to have abnormalities of the immune system, but doctors do not know whether these abnormalities are a cause or result of the disease. Crohn’s disease is not caused by emotional distress.

What are the symptoms?

The most common symptoms of Crohn’s disease are abdominal pain, often in the lower right area, and diarrhea. Rectal bleeding, weight loss, and fever may also occur. Bleeding may be serious and persistent, leading to anemia. Children with Crohn’s disease may suffer delayed development and stunted growth.

How is Crohn’s disease diagnosed?

A thorough physical exam and a series of tests may be required to diagnose Crohn’s disease.

Blood tests may be done to check for anemia, which could indicate bleeding in the intestines. Blood tests may also uncover a high white blood cell count, which is a sign of inflammation somewhere in the body. By testing a stool sample, the doctor can tell if there is bleeding or infection in the intestines.

The doctor may do an upper gastrointestinal (GI) series to look at the small intestine. For this test, the patient drinks barium, a chalky solution that coats the lining of the small intestine, before x rays are taken.

The barium shows up white on x-ray film, revealing inflammation or other abnormalities in the intestine. 

The doctor may also do a colonoscopy. For this test, the doctor inserts an endoscope—a long, flexible, lighted tube linked to a computer and TV monitor—into the anus to see the inside of the large intestine. The doctor will be able to see any inflammation or bleeding. During the exam, the doctor may do a biopsy, which involves taking a sample of tissue from the lining of the intestine to view with a microscope.

If these tests show Crohn’s disease, more x rays of both the upper and lower digestive tract may be necessary to see how much is affected by the disease.

What are the complications of Crohn’s disease?

The most common complication is blockage of the intestine. Blockage occurs because the disease tends to thicken the intestinal wall with swelling and scar tissue, narrowing the passage. Crohn’s disease may also cause sores, or ulcers, that tunnel through the affected area into surrounding tissues such as the bladder, vagina, or skin. The areas around the anus and rectum are often involved. The tunnels, called fistulas, are a common complication and often become infected. Sometimes fistulas can be treated with medicine, but in some cases they may require surgery.

Nutritional complications are common in Crohn’s disease. Deficiencies of proteins, calories, and vitamins are well documented in Crohn’s disease. These deficiencies may be caused by inadequate dietary intake, intestinal loss of protein, or poor absorption (malabsorption).

Other complications associated with Crohn’s disease include 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 resolve during treatment for disease in the digestive system, but some must be treated separately.

What is the treatment for Crohn’s disease?

Treatment for Crohn’s disease depends on the location and severity of disease, complications, and response to previous treatment. The goals of treatment are to control inflammation, correct nutritional deficiencies, and relieve symptoms like abdominal pain, diarrhea, and rectal bleeding. Treatment may include drugs, nutrition supplements, surgery, or a combination of these options. At this time, treatment can help control the disease, but there is no cure. 

Some people have long periods of remission, sometimes years, when they are free of symptoms. However, the disease usually recurs at various times over a person’s lifetime. This changing pattern of the disease means one cannot always tell when a treatment has helped. Predicting when a remission may occur or when symptoms will return is not possible.

Someone with Crohn’s disease may need medical care for a long time, with regular doctor visits to monitor the condition. 

Drug Therapy

Most people are first treated with drugs containing mesalamine, a substance that helps control inflammation. Sulfasalazine is the most commonly used of these drugs. Patients who do not benefit from it or who cannot tolerate it may be put on other mesalamine-containing drugs, generally known as 5-ASA agents, such as Asacol, Dipentum, or Pentasa. Possible side effects of mesalamine preparations include nausea, vomiting, heartburn, diarrhea, and headache.

Some patients take corticosteroids to control inflammation. These drugs are the most effective for active Crohn’s disease, but they can cause serious side effects, including greater susceptibility to infection.

Drugs that suppress the immune system are also used to treat Crohn’s disease. Most commonly prescribed are 6-mercaptopurine and a related drug, azathioprine. Immunosuppressive agents work by blocking the immune reaction that contributes to inflammation. These drugs may cause side effects like nausea, vomiting, and diarrhea and may lower a person’s resistance to infection. When patients are treated with a combination of corticosteroids and immunosuppressive drugs, the dose of corticosteriods can eventually be lowered. Some studies suggest that immunosuppressive drugs may enhance the effectiveness of corticosteroids.

The U.S. Food and Drug Administration has approved the drug infliximab (brand name, Remicade) for the treatment of moderate to severe Crohn’s disease that does not respond to standard therapies (mesalamine substances, corticosteroids, immunosuppressive agents) and for the treatment of open, draining fistulas. Infliximab, the first treatment approved specifically for Crohn’s disease, is an anti-tumor necrosis factor (TNF) substance. TNF is a protein produced by the immune system that may cause the inflammation associated with Crohn’s disease. Anti-TNF removes TNF from the bloodstream before it reaches the intestines, thereby preventing inflammation. Investigators will continue to study patients taking infliximab to determine its long-term safety and efficacy.

Antibiotics are used to treat bacterial overgrowth in the small intestine caused by stricture, fistulas, or prior surgery. For this common problem, the doctor may prescribe one or more of the following antibiotics: ampicillin, sulfonamide, cephalosporin, tetracycline, or metronidazole.

Diarrhea and crampy abdominal pain are often relieved when the inflammation subsides, but additional medication may also be necessary. Several antidiarrheal agents could be used, including diphenoxylate, loperamide, and codeine. Patients who are dehydrated because of diarrhea will be treated with fluids and electrolytes.

Nutrition Supplementation 

The doctor may recommend nutritional supplements, especially for children whose growth has been slowed. Special high-calorie liquid formulas are sometimes used for this purpose. A small number of patients may need periods of feeding by vein. This can help patients who need extra nutrition temporarily, those whose intestines need to rest, or those whose intestines cannot absorb enough nutrition from food.

Surgery

Surgery to remove part of the intestine can help Crohn’s disease but cannot cure it. The inflammation tends to return next to the area of intestine that has been removed. Many Crohn’s disease patients require surgery, either to relieve symptoms that do not respond to medical therapy or to correct complications such as blockage, perforation, abscess, or bleeding in the intestine. 

Some people who have Crohn’s disease in the large intestine need to have their entire colon removed in an operation called colectomy. A small opening is made in the front of the abdominal wall, and the tip of the ileum is brought to the skin’s surface. This opening, called a stoma, is where waste exits the body. The stoma is about the size of a quarter and is usually located in the right lower part of the abdomen near the beltline. A pouch is worn over the opening to collect waste, and the patient empties the pouch as needed. The majority of colectomy patients go on to live normal, active lives.

Sometimes only the diseased section of intestine is removed and no stoma is needed. In this operation, the intestine is cut above and below the diseased area and reconnected.

Because Crohn’s disease often recurs after surgery, people considering it should carefully weigh its benefits and risks compared with other treatments. Surgery may not be appropriate for everyone. People faced with this decision should get as much information as possible from doctors, nurses who work with colon surgery patients (enterostomal therapists), and other patients. Patient advocacy organizations can suggest support groups and other information resources. (See For more information for the names of such organizations.) 

People with Crohn’s disease may feel well and be free of symptoms for substantial spans of time when their disease is not active. Despite the need to take medication for long periods of time and occasional hospitalizations, most people with Crohn’s disease are able to hold jobs, raise families, and function successfully at home and in society.

Can diet control Crohn’s disease?

No special diet has been proven effective for preventing or treating this disease. Some people find their symptoms are made worse by milk, alcohol, hot spices, or fiber. People are encouraged to follow a nutritious diet and avoid any foods that seem to worsen symptoms. But there are no consistent rules.

People should take vitamin supplements only on their doctor’s advice.

Is pregnancy safe for women with Crohn’s disease?

Research has shown that the course of pregnancy and delivery is usually not impaired in women with Crohn’s disease. Even so, women with Crohn’s disease should discuss the matter with their doctors before pregnancy. Most children born to women with Crohn’s disease are unaffected. Children who do get the disease are sometimes more severely affected than adults, with slowed growth and delayed sexual development in some cases.

Hope Through Research

Researchers continue to look for more effective treatments. Examples of investigational treatments include

Anti-TNF. Research has shown that cells affected by Crohn’s disease contain a cytokine, a protein produced by the immune system, called tumor necrosis factor (TNF). TNF may be responsible for the inflammation of Crohn’s disease. Anti-TNF is a substance that finds TNF in the bloodstream, binds to it, and removes it before it can reach the intestines and cause inflammation. In studies, anti-TNF seems particularly helpful in closing fistulas.

Interleukin 10. Interleukin 10 (IL-10) is a cytokine that suppresses inflammation. Researchers are now studying the effectiveness of synthetic IL-10 in treating Crohn’s disease.

Antibiotics. Antibiotics are now used to treat the bacterial infections that often accompany Crohn’s disease, but some research suggests that they might also be useful as a primary treatment for active Crohn’s disease.

Budesonide. Researchers recently identified a new corticosteroid called budesonide that appears to be as effective as other corticosteroids but causes fewer side effects.

Methotrexate and cyclosporine. These are immunosuppressive drugs that may be useful in treating Crohn’s disease. One potential benefit of methotrexate and cyclosporine is that they appear to work faster than traditional immunosuppressive drugs.

Natalizumab. Natalizumab is an experimental drug that reduces symptoms and improves the quality of life when tested in people with Crohn’s disease. The drug decreases inflammation by binding to immune cells and preventing them from leaving the bloodstream and reaching the areas of inflammation.

Zinc. Free radicals—molecules produced during fat metabolism, stress, and infection, among other things—may contribute to inflammation in Crohn’s disease. Free radicals sometimes cause cell damage when they interact with other molecules in the body. The mineral zinc removes free radicals from the bloodstream. Studies are under way to determine whether zinc supplementation might reduce inflammation.

For more information

Cancer Information Service
National Cancer Institute
Phone: 1-800-4-CANCER (1-800-422-6237) 
TTY: 1-800-332-8615
Internet: cancer.gov/cis 

Crohn’s & Colitis Foundation of America Inc.
386 Park Avenue South, 17th floor 
New York, NY 10016-8804
Phone: 1-800-932-2423 or (212) 685-3440
Fax: (212) 779-4098
Email: info@ccfa.org
Internet: www.ccfa.org

International Foundation for Functional Gastrointestinal Disorders (IFFGD) Inc.
P.O. Box 170864 
Milwaukee, WI 53217
Phone: 1-888-964-2001 or (414) 964-1799
Fax: (414) 964-7176 
Email: iffgd@iffgd.org
Internet: www.iffgd.org 

Pediatric Crohn’s & Colitis Association, Inc.
P.O. Box 188
Newton, MA 02468
Phone: (617) 489-5854
Email: questions@pcca.hypermart.net
Internet: http://pcca.hypermart.net

Reach Out for Youth with Ileitis and Colitis, Inc.
15 Chemung Place
Jericho, NY 11753
Phone: (516) 822-8010

United Ostomy Association, Inc.
19772 MacArthur Blvd. #200
Irvine, CA 92612-2405
Phone: 1-800-826-0826 or (949) 660-8624
Fax: (949) 660-9262
Email: uoa@deltanet.com
Internet: www.uoa.org