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Patient education: Ulcerative colitis (Beyond the Basics)

Patient education: Ulcerative colitis (Beyond the Basics)
Authors:
Mark A Peppercorn, MD
Sunanda V Kane, MD, MSPH
Section Editor:
J Thomas Lamont, MD
Deputy Editor:
Kristen M Robson, MD, MBA, FACG
Literature review current through: Nov 2022. | This topic last updated: Jul 22, 2021.

ULCERATIVE COLITIS OVERVIEW — Ulcerative colitis is a disease in which the lining of the colon (the large intestine) becomes inflamed and develops sores (ulcers), leading 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 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 'Professional level information' below.)

ULCERATIVE COLITIS CAUSES — Ulcerative colitis is part of a group of conditions called inflammatory bowel diseases (IBD). Crohn disease is another inflammatory bowel disease, although that disease can affect the entire digestive tract (mouth to anus), while ulcerative colitis only affects the colon (figure 2). Inflammatory bowel disease is not the same as irritable bowel syndrome (IBS). (See "Patient education: Crohn disease (Beyond the Basics)" and "Patient education: Irritable bowel syndrome (Beyond the Basics)".)

The cause of ulcerative colitis is not known, although genetics and environmental factors both appear to play a role.

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

Risk factors — When a person with a genetic susceptibility is exposed to a trigger (such as an infection, antibiotic, or something in the environment), the immune system can be activated. When this happens, the immune system recognizes the lining of the colon as foreign and attacks it, leading to inflammation. In addition, ulcerative colitis can present after a person quits smoking. However, no single factor has been proven to be a known trigger in all situations.

ULCERATIVE COLITIS SYMPTOMS — The main symptom of ulcerative colitis is diarrhea, which may contain blood or mucus. People may also have abdominal pain and pain in the rectal area.

The symptoms of ulcerative colitis can be mild, moderate, or severe, and can fluctuate over time. Periods of active symptoms are called "flares." When symptoms are under control and the colon is not inflamed, the ulcerative colitis is considered "in remission."

Bowel symptoms — Ulcerative colitis is classified as mild, moderate, or severe based on symptoms.

People with mild disease may have:

Mild diarrhea that may or may not be bloody (up to four episodes per day)

Mild, crampy abdominal pain

Straining with bowel movements

Bouts of constipation

People with moderate disease may have:

Frequent episodes of bloody diarrhea (more than four per day)

Feeling tired or weak due to anemia (a low red blood cell count)

Mild to moderate abdominal pain

Low-grade fever

People with severe disease may have:

Very frequent episodes of bloody diarrhea (six or more per day)

Feeling tired or weak due to anemia (a low red blood cell count)

Severe abdominal pain and cramping

A racing heartbeat

Fever

Weight loss, which can happen quickly

Non-bowel symptoms — For reasons that are not well understood, people with ulcerative colitis can develop inflammation outside of the colon. Inflammation may affect large joints (hips and knees), causing swelling and pain. It can also affect the eyes, the skin, and the bile ducts (through which bile flows from the gallbladder and liver to the intestine, to help with digestion). Some types of inflammation cause symptoms (for example, itchy eyes or red spots on the skin), while others are only detected when blood tests show an abnormality.

These symptoms usually occur during disease flares. However, inflammation can develop even when symptoms are in remission.

ULCERATIVE COLITIS DIAGNOSIS — Your health care provider may suspect ulcerative colitis based upon your symptoms, physical examination, and laboratory test results. To confirm the diagnosis, you will also need a procedure that allows a doctor to look inside your colon, such as sigmoidoscopy or colonoscopy. During these tests, the doctor takes small samples of tissue from inside your colon, which can be examined under a microscope in order to diagnose ulcerative colitis. These tests also help rule out other conditions that can have similar symptoms, including Crohn disease, inflammation due to medications (such as non-steroidal anti-inflammatory drugs [NSAIDs] like ibuprofen), or certain infections. (See "Patient education: Colonoscopy (Beyond the Basics)" and "Patient education: Flexible sigmoidoscopy (Beyond the Basics)".)

ULCERATIVE COLITIS MANAGEMENT — The two main goals of treatment for ulcerative colitis are to:

Control 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 remain in long-term remission without medications, sometimes even for the rest of their lives.

Diet — Generally speaking, eating a well-balanced, nutritious diet can help you feel good and keep a healthy body weight. While there is no specific type of diet that has been proven to relieve symptoms in people with ulcerative colitis, some people do notice that certain foods seem to make symptoms worse. For example, some people feel better if they avoid dairy foods like milk, yogurt, and cheese, while others may find that it helps to adhere to a low-fiber diet. If this is your experience, it is reasonable to avoid the foods that exacerbate your symptoms. If you do choose to restrict your diet, it's a good idea to talk with your health care provider to ensure that you are getting the nutrients your body needs, and discuss whether you need to take supplements.

Avoiding medications that worsen symptoms — Pain relieving medications that contain nonsteroidal anti-inflammatory drugs (NSAIDS), such as ibuprofen (sample brand names: Advil, Motrin) and naproxen (sample brand name: Aleve), are not usually recommended if you have ulcerative colitis. These medications can worsen symptoms. If you need to take a pain reliever, acetaminophen (sample brand name: Tylenol) should not affect ulcerative colitis symptoms.

Treatment for mild to moderate symptoms — If your symptoms include rectal pain, rectal bleeding, and mild diarrhea (see 'Bowel symptoms' above), your treatment will likely include oral therapy as well as perhaps some topical medications that you apply directly to the rectum. The medication most often used first is called 5-ASA (aminosalicylic acid or mesalamine); it works by reducing inflammation in the rectum and colon. (See "Patient education: Sulfasalazine and the 5-aminosalicylates (Beyond the Basics)".)

If symptoms do not improve after several weeks, your health care provider might recommend adding a topical or oral glucocorticoid (steroid) medication and/or starting an oral 5-ASA medication.

Most people will experience symptom improvement soon after beginning treatment, and complete symptom relief after about four to six weeks. Continuous, lifelong treatment with a 5-ASA medication may be recommended to maintain remission.

Treatment for severe symptoms — If your symptoms are more severe (eg, six or more episodes of bloody diarrhea per day, often accompanied by additional symptoms), or a larger area of your colon is affected, your health care provider will probably recommend oral glucocorticoid (steroid) medication or a biologic therapy:

Oral glucocorticoids – Glucocorticoids cannot be used chronically, and they are tapered (ie, the dose is gradually reduced) once symptoms have improved. If severe symptoms continue, you may need treatment in the hospital with intravenous (IV) medications or a different therapy for ulcerative colitis.

Biologics – Biologic response modifiers or "biologics" are medications that have been used to treat Crohn disease and rheumatoid arthritis, and are also used to treat ulcerative colitis. Examples include adalimumab (brand name: Humira), infliximab (brand names: Remicade, Inflectra, Renflexis, Avsola), vedolizumab (brand name: Entyvio), or ustekinumab (brand name: Stelara). They work by interfering with pathways involved in inflammation, and they promote healing of the inflamed colon. These medications can be used to induce remission and, long-term, to maintain remission.

Biologics may be used alone or in combination with other treatments. Because of the potential risk of side effects, biologic agents are generally reserved for people with moderate to severe ulcerative colitis.

Small molecules – Small molecules are medicines that are taken by mouth and work on the immune system but act differently than biologics. Tofacitinib (brand name: Xeljanz) and ozanimod (brand name: Zeposia) work within a few weeks to control moderately to severely active disease and can be used long term to control disease.

If symptoms do not improve — Some people do not respond, or respond only partially, to the treatments described above. These people are said to have "refractory" ulcerative colitis. This includes people who depend upon oral steroids to control their symptoms.

Treatments for refractory ulcerative colitis include:

Intravenous steroids – Some patients may be admitted to the hospital for intravenous glucocorticoids (steroids). Most patients who respond have improvement in their symptoms usually within several days.

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 for life (ie, to maintain remission) due to potentially toxic side effects (risk of infection, kidney damage). This treatment is given in the hospital and once symptoms are under control, other treatments can be slowly substituted.

Researchers are studying other medications that may be available to treat ulcerative colitis in the future.

ULCERATIVE COLITIS SURGERY — People whose symptoms do not respond to medications, or who have difficulty with the side effects of their medications, sometimes choose to have their colon surgically removed. There are several surgical procedures that may be recommended to treat ulcerative colitis. It is important to discuss all of the benefits and risks of surgery with your health care provider, and also to have realistic expectations of the results.

The procedures can be divided into two groups:

Those that require you to wear a bag to collect bowel movements (permanent ileostomy)

Those that preserve your ability to control your bowel movements (reattachment of anus/rectum)

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 (ostomy) on the lower right side of the abdomen near the waistline. After this, your bowel movements will exit your body through the ostomy, rather than through your anus. You will wear a plastic bag on the outside of the ostomy to catch the bowel movements, and you will empty the bag as needed. While living with an ostomy can be challenging, especially at first, most people are able to live an active and normal life once they get used to it. Your health care provider can help you learn how to manage your ostomy; it may also help to talk with other people who have had a similar experience.

One variation of this surgery involves creating a sac or pouch inside the lower abdomen to collect stool. 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 the most common surgery used to treat ulcerative colitis. During the procedure, the surgeon removes the large bowel and all or most of the rectum, but preserves 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.

This surgery allows you to continue to have bowel movements through your 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 education: Screening for colorectal cancer (Beyond the Basics)".)

In general, colonoscopy is recommended eight years after you first start having symptoms of ulcerative colitis. If this colonoscopy is normal, it is usually repeated every one to three years.

PREGNANCY AND ULCERATIVE COLITIS — Issues related to pregnancy and ulcerative colitis are discussed separately. (See "Patient education: Inflammatory bowel disease and pregnancy (Beyond the Basics)".)

WHERE TO GET MORE INFORMATION — Your healthcare provider is the best source of information for questions and concerns related to your medical problem.

This article will be updated as needed on our website. Related topics for patients, as well as selected articles written for healthcare professionals, are also available. Some of the most relevant are listed below

Patient level information — UpToDate offers two types of patient education materials.

The Basics — The Basics patient education pieces answer the four or five key questions a patient might have about a given condition. These articles are best for patients who want a general overview and who prefer short, easy-to-read materials.

Patient education: Ulcerative colitis in adults (The Basics)
Patient education: Colon and rectal cancer screening (The Basics)
Patient education: Colostomy care (The Basics)
Patient education: Colectomy (The Basics)
Patient education: Pyoderma gangrenosum (The Basics)
Patient education: Erythema nodosum (The Basics)
Patient education: Ileostomy care (The Basics)
Patient education: Ulcerative colitis in children (The Basics)

Beyond the Basics — Beyond the Basics patient education pieces are longer, more sophisticated, and more detailed. These articles are best for patients who want in-depth information and are comfortable with some medical jargon.

Patient education: Crohn disease (Beyond the Basics)
Patient education: Irritable bowel syndrome (Beyond the Basics)
Patient education: Colonoscopy (Beyond the Basics)
Patient education: Flexible sigmoidoscopy (Beyond the Basics)
Patient education: Sulfasalazine and the 5-aminosalicylates (Beyond the Basics)
Patient education: Screening for colorectal cancer (Beyond the Basics)
Patient education: Inflammatory bowel disease and pregnancy (Beyond the Basics)

Professional level information — Professional level articles are designed to keep doctors and other health professionals up-to-date on the latest medical findings. These articles are thorough, long, and complex, and they contain multiple references to the research on which they are based. Professional level articles are best for people who are comfortable with a lot of medical terminology and who want to read the same materials their doctors are reading.

Overview of dosing and monitoring of biologic agents and small molecules for treating ulcerative colitis in adults
Clinical manifestations and diagnosis of arthritis associated with inflammatory bowel disease and other gastrointestinal diseases
Overview of azathioprine and mercaptopurine use in inflammatory bowel disease
Clinical manifestations, diagnosis, and prognosis of ulcerative colitis in adults
Primary sclerosing cholangitis: Inflammatory bowel disease and colorectal cancer
Surveillance and management of dysplasia in patients with inflammatory bowel disease
Definitions, epidemiology, and risk factors for inflammatory bowel disease
Endoscopic diagnosis of inflammatory bowel disease in adults
Fertility, pregnancy, and nursing in inflammatory bowel disease
Genetic factors in inflammatory bowel disease
Overview of hepatobiliary disorders in patients with inflammatory bowel disease
Medical management of low-risk adult patients with mild to moderate ulcerative colitis
Management of the hospitalized adult patient with severe ulcerative colitis
Sulfasalazine and 5-aminosalicylates in the treatment of inflammatory bowel disease
Surgical management of ulcerative colitis
Toxic megacolon
Management of mild to moderate ulcerative colitis in children and adolescents
Management of severe or refractory ulcerative colitis in children and adolescents
Management of moderate to severe ulcerative colitis in adults

The following organizations also provide reliable health information:

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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