Patient information: Ulcerative colitis

ULCERATIVE COLITIS OVERVIEW

Ulcerative colitis (UC) is a disease in which the lining of the colon (the large intestine) becomes inflammed and develops sores (ulcers), which leads to bleeding and diarrhea. The inflammation almost always affects the rectum and lower part of the colon, but it can affect the entire colon (figure 1).

Although ulcerative colitis cannot be cured, it can usually be controlled. Most people with ulcerative colitis are able to live active and productive lives. Controlling the disease usually means taking medications and seeing a healthcare provider on a regular basis.

This article discusses the causes, symptoms, and treatment of ulcerative colitis. More detailed information about ulcerative colitis is available by subscription. (See "Clinical manifestations, diagnosis, and prognosis of ulcerative colitis in adults" and "Medical management of ulcerative colitis".)

ULCERATIVE COLITIS CAUSES

Ulcerative colitis is part of a group of conditions called inflammatory bowel diseases (IBD). Crohn's disease is another inflammatory bowel disease, although it can affect the entire digestive tract (mouth to anus, (figure 2). Inflammatory bowel disease is NOT the same as irritable bowel syndrome (IBS). (See "Patient information: Crohn's disease" and "Patient information: Irritable bowel syndrome".)

The cause of ulcerative colitis is not known. People who develop ulcerative colitis are thought to have an increased risk of the condition, which is passed down from family members. When a person with this inherited risk is exposed to a trigger (an illness or something in the environment), the immune system is activated. The immune system recognizes the lining of the colon as foreign, and attacks it, leading to inflammation. This inflammation causes the lining of the colon to develop ulcers and bleed.

Genetics — Ulcerative colitis tends to run in families, suggesting that genetics have a role in this disease. About 10 to 25 percent of people with ulcerative colitis have a first-degree relative (either a sibling or parent) with inflammatory bowel disease (either ulcerative colitis or Crohn's disease).

Environment — Several environmental factors, such as infections, are suspected of triggering ulcerative colitis in people who have a genetic susceptibility. However, no single factor has been consistently proven to be the primary trigger.

ULCERATIVE COLITIS SYMPTOMS

The symptoms of ulcerative colitis can be mild, moderate, or severe, and can fluctuate over time.

Bowel symptoms — The most common symptoms of mild ulcerative colitis include:

• Intermittent rectal bleeding
• Mucus discharge from the rectum
• Mild diarrhea (defined as fewer than four stools per day)
• Mild, crampy abdominal pain
• Straining with bowel movements
• Bouts of constipation

In people with moderate to severe disease, the following symptoms can develop:

• Frequent, loose bloody stools (up to 10 or more per day)
• Low blood count (anemia)
• Abdominal pain, which can be severe
• Fever
• Weight loss

Non-bowel symptoms — For poorly understood reasons, people with ulcerative colitis can develop inflammation outside of the colon. Inflammation often affects large joints (hips, knees), causing swelling and pain, as well as the eyes, the skin, and, less commonly, the lungs.

These symptoms usually occur when ulcerative colitis symptoms are active (during a flare). However, inflammation can develop even when symptoms are quiet (in remission).

ULCERATIVE COLITIS DIAGNOSIS

Ulcerative colitis is usually diagnosed based upon your symptoms, a physical examination, and laboratory tests. (See "Clinical manifestations, diagnosis, and prognosis of ulcerative colitis in adults".)

You will likely need a procedure that allows your doctor to look inside your colon, such as sigmoidoscopy or colonoscopy. These tests allow your doctor to take tissue samples from the colon, which can confirm ulcerative colitis and rule out other conditions that have similar symptoms, including Crohn's disease, diverticulitis, and certain infections. (See "Patient information: Colonoscopy" and "Patient information: Flexible sigmoidoscopy".)

ULCERATIVE COLITIS TREATMENT

The two main goals of treatment for ulcerative colitis are to:

• End symptoms (achieve remission)
• Prevent symptoms from coming back (maintain remission)

For most people, ulcerative colitis has a frustrating pattern of flares and remissions. However, about 15 percent of people who have an initial attack will remain in remission without medications, possibly for the rest of their life. (See "Medical management of ulcerative colitis".)

Diet and ulcerative colitis — A well balanced, nutritious diet can help maintain health and a normal body weight. However, many people can identify foods that worsen symptoms, and it is reasonable to avoid these foods. Table 1 lists foods and beverages that worsen symptoms in some people (table 1). If you restrict your diet for any reason, you should take a daily multivitamin. A folic acid supplement is also recommended.

Pain medications that contain nonsteroidal antiinflammatory drugs (NSAIDS), such as ibuprofen (Advil®, Motrin®) and naproxen (Aleve®), are not usually recommended if you have ulcerative colitis. These medications can worsen symptoms. Acetaminophen (Tylenol®) should not cause a problem.

Lactose intolerance — Lactose intolerance can occur in people with ulcerative colitis. It occurs if you are not able to digest the sugar (lactose) contained in milk products. Symptoms of lactose intolerance may include diarrhea, cramps, or gas. The symptoms of lactose intolerance can be minimized by avoiding dairy products (table 2). If you do not drink dairy products, a calcium supplement with vitamin D is recommended to prevent thinning of the bones. (See "Patient information: Calcium and vitamin D for bone health".)

Treatments for mild symptoms — If your symptoms include rectal pain, rectal bleeding, and mild diarrhea, your treatment will include medications that you apply to the rectum. This may include an enema, suppository, or foam. Rectal medications include 5-ASA (aminosalicylic acid) or glucocorticoids (also called steroids), which work by reducing inflammation in the rectum and colon. (See "Patient information: Sulfasalazine and the 5-aminosalicylates".)

Oral medications may be recommended if your symptoms do not improve completely with the rectal treatments. (See "Sulfasalazine and 5-aminosalicylates in the treatment of inflammatory bowel disease".)

These treatments improve symptoms in most people after about three weeks. Up to 90 percent of people will have a remission with this treatment, and up to 70 percent of people will stay in remission. Continuous, lifelong treatment with a 5-ASA-medication is usually recommended to maintain remission, although it is often possible to taper the dose of medication.

Treatment for moderate to severe symptoms — If your symptoms are moderate to severe or a larger area of your colon is affected, you will probably be given an oral 5-ASA medication. This is sometimes given along with a rectal treatment.

If your symptoms are severe, you may need a glucocorticoid (also called steroid) for a short period of time. Glucocorticoids can be given rectally, in a foam or suppository, or as a pill. The pill is generally preferred for treating severe symptoms. When your symptoms quiet, you will probably stop the oral steroid pill, but you will continue to take one of the oral 5-ASA drugs. (See "Patient information: Sulfasalazine and the 5-aminosalicylates".)

When taken by mouth, steroids are very effective but may cause a number of bothersome side effects. The most common side effects include an increased appetite, weight gain, acne, fluid retention, trembling, mood swings, and difficulty sleeping. Because of the risk of these and other side effects, most people are tapered off of steroids as soon as possible.

If symptoms do not improve — Some people do not respond, or respond incompletely, to the treatments described above. These people are said to have refractory ulcerative colitis. This includes people who depend upon steroids to control their symptoms. (See "Approach to adults with steroid-refractory and steroid-dependent ulcerative colitis".)

Medications — People with refractory ulcerative colitis are usually treated first with medications that suppress the immune system. The most commonly used drugs are 6-mercaptopurine and azathioprine. (See "Azathioprine and 6-mercaptopurine in ulcerative colitis".)

• 6-mercaptopurine and azathioprine — Azathioprine and 6-mercaptopurine lessen symptoms in 60 to 70 percent of people and help to maintain remission and decrease the need for steroids. It may take three to six months to see the greatest benefit.

If treatment with 6-mercaptopurine and azathioprine is not effective, you may be given a choice between trying another medication, such as cyclosporine or infliximab, and having surgery to remove your colon. (See 'Ulcerative colitis surgery' below.)

• Cyclosporine — Cyclosporine is a powerful drug that was designed to prevent rejection after organ transplantation. It can be a very effective treatment to induce remission in people with refractory ulcerative colitis, although it cannot be used long-term (to maintain remission) due to potentially toxic side effects. Once symptoms are under control, other treatments can be slowly substituted.
• Infliximab — Infliximab (Remicade®) is a powerful medication that has been used to treat Crohn's disease and rheumatoid arthritis, and is sometimes used to treat refractory ulcerative colitis. Infliximab can be used to induce remission and long term, to maintain remission.

Infliximab works differently than other treatments for UC. It is in a class of medications known as biologic response modifiers, which work by interfering with pathways involved in inflammation. Infliximab must be given into a vein in a doctor's office or clinic, which takes one to three hours to complete.

Infliximab may be used alone or in combination with other treatments. Because of the cost and the potential risk of side effects, biologic response agents are generally reserved for people with severe ulcerative colitis who have not responded to steroids, who prefer to avoid surgical removal of the colon, and who cannot take cyclosporine.

ULCERATIVE COLITIS SURGERY

People who cannot tolerate the constant battle with their disease sometimes choose to have their colon surgically removed. There are several surgical procedures that may be recommended to treat ulcerative colitis (table 1). It is important to discuss all of the benefits and risks of surgery with a doctor, and also to have realistic expectations of the results. (See "Surgical management of inflammatory bowel disease".)

The procedures can be divided into two groups:

• Those that preserve your ability to control bowel movements
• Those that require you to wear a bag to collect bowel movements

Removal of colon with permanent ileostomy — During this procedure, the surgeon removes your colon, rectum, and anus; this is called proctocolectomy. The surgeon then attaches the ileum, or lower end of the small intestine, to an opening (stoma) on the lower right side of the abdomen near the waistline. Bodily waste now exits your body through the stoma, rather than through your anus. You will wear a plastic bag on the outside of the stoma to catch the bowel movements, and you will empty the bag as needed.

One variation of this surgery involves creating a sac or pouch inside the lower abdomen to collect stool (figure 3). Waste empties into this internal pouch. A small, leakproof opening is created in your abdomen so that you can insert a tube to drain the pouch.

Removal of colon and reattachment of anus/rectum — This procedure is one of the most common surgeries used to treat ulcerative colitis. During the procedure, the surgeon removes the large bowel and all or most of the rectum, but saves the anal sphincter or lower part of the rectum. The surgeon then creates a tubular pouch out of the end of the small intestine and sews it to the anal canal (figure 4).

This surgery allows you to have bowel movements through the anus and you will not need a permanent ileostomy. However, in most cases, you will require a temporary ileostomy while the new rectum heals. When the new rectum is healed, the bowel is connected to the anal sphincter.

There is a risk of fecal leakage after this procedure, particularly at night. There is also a risk of recurrent ulcerative colitis in the end portion of the rectum.

COLORECTAL CANCER AND ULCERATIVE COLITIS

People with ulcerative colitis have an increased risk of colorectal cancer. Your risk of colorectal cancer is related to the length of time since you were diagnosed and how much of your colon is affected. In general, people who have had the disease for a longer time and those with larger areas of disease have a greater risk than those with a more recent diagnosis or smaller areas of disease.

Colorectal cancer usually develops from precancerous changes in the colon, which grow slowly and can be detected with a screening test, such as colonoscopy. (See "Patient information: Colon cancer screening".)

In general, colonoscopy is recommended 8 to 12 years after your symptoms appear. If this colonoscopy is normal, it is usually repeated once per year. (See "Colorectal cancer surveillance in inflammatory bowel disease".)

PREGNANCY AND ULCERATIVE COLITIS

A separate article discusses pregnancy and UC. (See "Patient information: Inflammatory bowel disease and pregnancy".)

WHERE TO GET MORE INFORMATION

Your healthcare provider is the best source of information for questions and concerns related to your medical problem. Because no two people are exactly alike and recommendations can vary from one person to another, it is important to seek guidance from a provider who is familiar with your individual situation.

This discussion will be updated as needed every four months on our web site (www.uptodate.com/patients). Additional topics as well as selected discussions written for healthcare professionals are also available for those who would like more detailed information.

Some of the most pertinent include:

Patient Level Information:
Patient information: Crohn's disease
Patient information: Irritable bowel syndrome
Patient information: Colonoscopy
Patient information: Flexible sigmoidoscopy
Patient information: Calcium and vitamin D for bone health
Patient information: Sulfasalazine and the 5-aminosalicylates
Patient information: Colon cancer screening
Patient information: Inflammatory bowel disease and pregnancy

Professional Level Information:
Anti-tumor necrosis factor therapy in ulcerative colitis
Antibiotics for treatment of inflammatory bowel diseases
Arthritis associated with gastrointestinal disease
Azathioprine and 6-mercaptopurine in ulcerative colitis
Clinical manifestations, diagnosis, and prognosis of ulcerative colitis in adults
Colorectal cancer and primary sclerosing cholangitis
Colorectal cancer surveillance in inflammatory bowel disease
Definition of and risk factors for inflammatory bowel disease
Endoscopic diagnosis of inflammatory bowel disease
Epidemiology and etiology of inflammatory bowel disease in children and adolescents
Epidemiology and genetic and environmental factors in inflammatory bowel disease in adults
Fertility, pregnancy, and nursing in inflammatory bowel disease
Hepatobiliary manifestations of inflammatory bowel disease
Management of ulcerative proctitis, proctosigmoiditis, and left-sided colitis
Medical management of ulcerative colitis
Sulfasalazine and 5-aminosalicylates in the treatment of inflammatory bowel disease
Surgical management of inflammatory bowel disease
Toxic megacolon
Ulcerative colitis in children and adolescents
Approach to adults with steroid-refractory and steroid-dependent ulcerative colitis

A number of web sites have information about medical problems and treatments, although it can be difficult to know which sites are reputable. Information provided by the National Institutes of Health, national medical societies and some other well-established organizations are often reliable sources of information, although the frequency with which they are updated is variable.

• National Library of Medicine

      (www.nlm.nih.gov/medlineplus/healthtopics.html)

• National Institute of Diabetes and Digestive and Kidney Diseases

      (www.niddk.nih.gov/)

• The American Society of Colon and Rectal Surgeons

      (www.fascrs.org)

• The American Gastroenterological Association

      (www.gastro.org)

• The Crohn's and Colitis Foundation of America

      (www.ccfa.org)

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