Ulcerative Colitis

Ulcerative colitis is a lifelong condition that causes chronic inflammation and ulcers in the lining of the large intestine, affecting around 600,000 to 900,000 people in the United States and making it the most common form of inflammatory bowel disease.

What is ulcerative colitis?
Who gets ulcerative colitis?
Symptoms
Causes and risk factors
Types of ulcerative colitis
Diagnosis
Treatment
Complications
Living with ulcerative colitis

What is ulcerative colitis?

Ulcerative colitis is a chronic disease that causes inflammation and ulcers in the lining of your large intestine, also called the colon, and the rectum (the last six inches of the large intestine that connects to the anal canal)^[1]. The condition is one type of inflammatory bowel disease (IBD), which refers to a group of lifelong diseases that cause inflammation of the intestine^[2].

Ulcerative colitis characteristically involves inflammation restricted to the mucosa and submucosa of the colon, meaning it affects only the inner lining of the colon and does not reach through other layers of the intestine wall^[2]^[3]. The disease typically starts in the rectum and extends proximally in a continuous manner, leaving no healthy tissue along its path^[2]^[3].

Small ulcers can develop on the colon’s lining, and these can bleed and produce pus^[4]. The inflammation causes the walls of the colon to weaken, wearing away affected areas and creating open sores^[2].

Large intestine (colon)
Rectum

Who gets ulcerative colitis?

Ulcerative colitis can develop at any age, but it is most often diagnosed in people between 15 and 30 years old^[1]^[4]. Research suggests that about 600,000 to 900,000 people in the United States have ulcerative colitis^[6].

The condition is more common in white people of European descent, especially those descended from Ashkenazi Jewish communities, and black people^[4]. It is rarer in people from Asian backgrounds^[4]. Both men and women appear to be equally affected by ulcerative colitis^[4].

People who have a first-degree relative (a parent, sibling, or child) with IBD are more likely to develop ulcerative colitis^[6]. A first-degree relative of a patient with ulcerative colitis has a four times higher risk of developing the disease^[3]. Between 8% and 14% of patients have a family history of the disease^[3].

Symptoms

The main symptoms of ulcerative colitis often get worse over time^[5]. Symptoms usually come in waves and can range from mild to severe, depending on the amount of the colon affected and how badly the area is damaged^[2].

In the beginning, you may notice signs of mild ulcerative colitis, including^[5]:

Diarrhea (may or may not be bloody)
Increased bowel movements or episodes of diarrhea (four or fewer episodes daily)
Urgent bowel movements (sudden need to poop)
Tenesmus (feeling like you have to poop but being unable to)
Mild abdominal (belly) cramping or tenderness

Later, you may also have symptoms of moderate to severe ulcerative colitis, including^[5]:

Frequent bowel movements or episodes of diarrhea (four or more episodes daily)
Blood, mucus or pus in your stool
Severe belly cramping with bowel movements
Fatigue (extreme tiredness)
Sudden weight loss
Loss of appetite
Nausea
Fever

About half of people have mild symptoms during flare-ups (periods when symptoms are particularly troublesome). Others experience frequent fevers, bloody diarrhea, nausea and severe abdominal cramps^[5].

Some people may go for weeks or months with very mild symptoms, or none at all. This period is called remission. After remission, people may experience flare-ups or relapses^[4].

Some people who have ulcerative colitis that involves just the bottom of their large intestine will also feel paradoxically constipated. They’ll feel bloated and have a lot of gas. This happens because the bowel above the inflammation is working just fine, but when things get to the inflamed area, they’re not stretching and working the way they’re supposed to, so things get backed up^[14].

Symptoms affecting other parts of the body

About 25% of people with ulcerative colitis eventually develop conditions and associated symptoms that affect body parts other than their colon. These are known as extra-intestinal manifestations^[5]. During a flare-up, some people with ulcerative colitis also experience^[4]:

Painful and swollen joints (arthritis)
Mouth ulcers
Swollen fat under the skin causing bumps and patches (known as erythema nodosum)
Irritated and red eyes
Problems with bones, such as osteoporosis
Joint pain and swelling
Red, burning or itchy eyes
Painful bumps, rashes or ulcers on the skin

The most common extra-intestinal manifestation is joint pain. The most common type of joint pain is symmetrical, meaning it’s on both sides of the body, and affects the smaller joints. This type is specifically related to the active inflammation of the bowel. When you treat the bowel inflammation, the joint pain gets better^[14].

Causes and risk factors

The exact cause of ulcerative colitis is unknown^[1]^[3]. Ulcerative colitis is thought to be an autoimmune condition. This means the immune system, the body’s defense against infection, goes wrong and attacks healthy tissue^[4].

Researchers think the cause of ulcerative colitis is complex and involves many risk factors. Most agree that it’s related to an overactive immune response^[5]. The most popular theory is that the immune system mistakes harmless bacteria inside the colon as a threat and attacks the tissues of the colon, causing it to become inflamed^[4]. It may involve an abnormal immune response against some microorganism in which your tissues are also attacked^[1].

Exactly what causes the immune system to behave in this way is unclear. Many experts think it’s a combination of genetic and environmental factors^[4]. Additionally, it has been postulated that alterations in the composition of the gut microbiota and defects in mucosal immunity could lead to ulcerative colitis^[3].

Genetics might play a role. The most important independent risk factor is a family history of the disease^[1]^[3]. Ulcerative colitis has a higher incidence in Jewish populations than other ethnicities^[3].

Ulcerative colitis is closely linked to a Westernized environment and lifestyle^[3]. There is some evidence suggesting that smoking may be protective, but no one has been able to confirm a direct relationship^[3].

Types of ulcerative colitis

Healthcare providers classify ulcerative colitis based on where the inflammation is in your colon. The inflammation usually starts in your rectum, which is close to your anus. The inflammation can spread and affect all or part of your colon^[5]. Types include^[5]:

Ulcerative proctitis: Inflammation affects your rectum
Proctosigmoiditis: Inflammation affects your rectum and sigmoid colon (the lower, S-shaped part of your colon)
Left-sided colitis: Inflammation affects the left side of your colon
Pancolitis: Inflammation affects your entire colon

About 30% of adults, when they’re diagnosed with ulcerative colitis, will have the entire colon affected, and 30% will have just the rectum inflamed^[14]. In addition, some patients, when they’re diagnosed with less than the entire large intestine inflamed, will have progression of their disease over time^[14].

Ulcerative colitis may be mild, moderate or severe, depending on your symptoms^[5]. The most severe form, fulminant ulcerative colitis, is rare. It causes extremely severe symptoms and can cause life-threatening complications that require urgent medical treatment^[2]^[5].

Diagnosis

To diagnose ulcerative colitis, healthcare professionals perform various tests and procedures^[8].

Lab tests

A healthcare professional may suggest blood tests to check for anemia (a condition in which there aren’t enough red blood cells to carry oxygen to the tissues) or signs of infection^[8]. Sometimes, markers of inflammation also are checked^[8].

Stool studies can help rule out other conditions. White blood cells or certain proteins in stool can suggest ulcerative colitis. A stool sample can also help rule out infections caused by bacteria, viruses or parasites^[8].

Endoscopic procedures

Colonoscopy is a key diagnostic test. This exam allows a healthcare professional to view the entire colon using a thin, flexible, lighted tube with a camera on the end. During the procedure, the healthcare professional takes samples of tissue for testing in a lab. This is called a biopsy. A tissue sample is necessary to make the diagnosis^[8].

Flexible sigmoidoscopy is similar to colonoscopy but uses a shorter tube. This test looks at the rectum and sigmoid colon (the lower end of the colon). If the colon is severely inflamed, this test may be done instead of a full colonoscopy^[8].

Imaging procedures

If symptoms are severe, a standard X-ray of the abdominal area may be done to rule out complications^[8].

Treatment

Treatment for ulcerative colitis aims to relieve symptoms during a flare-up and prevent symptoms from returning (maintaining remission)^[4]. The goal of treatment is to induce and maintain remission, while minimizing the need for corticosteroids^[13].

Mild to moderate flare-ups can usually be treated at home. But more severe flare-ups need to be treated in hospital^[4].

Aminosalicylates (5-ASAs)

Aminosalicylates, also known as 5-ASAs, are medicines that help to reduce inflammation. This allows damaged tissue to heal^[10]. They’re usually the first treatment option for mild or moderate ulcerative colitis^[10]^[13].

5-ASAs can be used as a short-term treatment for flare-ups. They can also be taken long term, usually for the rest of your life, to maintain remission^[10]. 5-ASAs can be taken orally (by swallowing a tablet or capsule), as a suppository (a capsule that you insert into your bottom where it dissolves), or through an enema (where fluid is pumped into your large intestine)^[10].

For ulcerative colitis that affects just the rectum (proctitis), topical therapy with 5-ASA compounds is used^[11]. These medicines rarely have side effects, but some people may experience headaches, feeling sick, tummy pain, a rash, or diarrhea^[10].

Corticosteroids

Corticosteroids, such as prednisolone, are medicines used to reduce inflammation^[10]. They can be used with or instead of 5-ASAs to treat a flare-up if 5-ASAs alone are not effective^[10].

Like 5-ASAs, steroids can be given orally, through a suppository, or through an enema^[10]. However, corticosteroids are not used as a long-term treatment to maintain remission because they can cause potentially serious side effects when used for a long time, such as weakening of the bones (osteoporosis) and cloudy patches in the lens of the eye (cataracts)^[10].

Side effects of short-term steroid use can include acne, weight gain, increased appetite, mood changes (such as becoming more irritable), and difficulty sleeping (insomnia)^[10].

Immunosuppressants

Immunosuppressants, such as tacrolimus and azathioprine, are medicines that reduce the activity of the immune system^[10]. They’re usually given as tablets to treat mild or moderate flare-ups, or maintain remission if your symptoms have not responded to other medicines^[10].

Immunosuppressants can be very effective in treating ulcerative colitis, but they may take a while to start working^[10]. The medicines can make you more vulnerable to infection, so it’s important to report any signs of infection, such as a high temperature or sickness, promptly to a doctor^[10].

Treating severe flare-ups

While mild or moderate flare-ups can usually be treated at home, more severe flare-ups should be managed in hospital to minimize the risk of dehydration and potentially fatal complications^[10].

In hospital, you’ll be given medicine and sometimes fluids directly into a vein (intravenously). The medicines you have may be a type of corticosteroid or an immunosuppressant medicine called infliximab or ciclosporin^[10].

Ciclosporin is given slowly through a drip in your arm (an infusion) and treatment will usually be continuous, for around 7 days^[10]. Side effects can include uncontrollable shaking or trembling, excessive hair growth, extreme tiredness, swollen gums, feeling and being sick, and diarrhea^[10].

Biologic medicines

Biologic medicines are medicines that reduce inflammation of the intestine by targeting proteins the immune system uses to stimulate inflammation^[10]. These medicines block receptors and reduce inflammation^[10].

They may be used to treat moderate to severe ulcerative colitis if other options are not suitable or not working^[10]. Biologic medicines are given in hospital as an infusion through a drip in your arm every 4 to 12 weeks, or as an injection every 1 to several weeks^[10].

Surgery

If medicines are not effective at controlling your symptoms or your quality of life is significantly affected by your condition, surgery to remove some or all of your bowel (colon) may be an option^[4].

During surgery, your small intestine can be diverted out of an opening in your abdomen known as a stoma. This type of surgery is known as an ileostomy. In some cases, the stoma is only temporary and can be closed up once your bowel has healed^[4].

An alternative option is to create an internal pouch that’s connected to your anus called an ileoanal pouch^[4].

Complications

Ulcerative colitis may lead to complications that develop over time^[6].

Long-term complications

Long-term complications of ulcerative colitis include^[6]:

Anemia, a condition in which you have fewer red blood cells than normal. Ulcerative colitis may lead to more than one type of anemia, including iron-deficiency anemia and anemia of inflammation or chronic disease
Bone problems, because ulcerative colitis and corticosteroids used to treat the disease can affect the bones. Bone problems include low bone mass, such as osteopenia or osteoporosis
Problems with growth and development in children, such as gaining less weight than normal, slowed growth, short stature, or delayed puberty
An increased risk of developing bowel cancer

When people have ulcerative colitis and it’s long standing, meaning more than 8 or 10 or 20 years, there is a slightly increased risk for them to develop pre-cancerous changes of the bowel^[14]. Patients with long-standing ulcerative colitis that involves a third or more of the colon are at increased risk and require closer screening^[6].

Emergency complications

In some cases, ulcerative colitis may lead to serious complications that develop quickly and can be life-threatening. These complications require treatment at a hospital or emergency surgery^[6]. The most severe complications generally stem from serious damage to the affected area (the colon and rectum)^[2].

Emergency complications include^[2]:

Severe dehydration, which can result from the colon’s reduced ability to absorb water and from fluid loss during frequent trips to the bathroom
Severe bleeding from the rectum, which can happen when ulcers cause a lot of blood to pass from the anus during a bowel movement
Perforated (torn) colon, which can happen when ulcers and chronic inflammation cause a hole in the colon
Toxic megacolon, which is when inflammation spreads to the deeper tissues of the intestines, causing inflammation so severe the colon stops working
Fulminant ulcerative colitis, which causes extremely severe symptoms, such as more than 10 bloody bowel movements in a day, often with fever, rapid heart rate, and severe anemia

If you think you are experiencing one of these life-threatening complications, seek medical attention right away^[2].

Living with ulcerative colitis

There are some things you can do to help keep symptoms of ulcerative colitis under control and reduce your risk of complications^[15]. Most people who have it can still lead active lives with long periods of remission^[2].

Dietary advice

Most people with ulcerative colitis are recommended to follow a healthy, balanced diet and drink plenty of fluids. This is to avoid dehydration and ensure you get all the nutrients you need^[15].

A specific diet is not thought to play a role in causing ulcerative colitis. But some people with inflammatory bowel disease may be recommended to make temporary changes to their diet after surgery, or to help control symptoms during a flare-up^[15]. For example, eating smaller meals more often, rather than 3 main meals, eating a low-fiber diet, or taking food supplements^[15].

It’s important to speak to your care team before making any changes to your diet^[15].

Keeping a food diary that documents what you eat can be helpful. You may find you can tolerate some foods, while others make your symptoms worse. By keeping a record of what and when you eat, you should be able to identify problem foods and eliminate them from your diet^[15].

Certain foods and beverages can trigger inflammation and a flare of your disease. Consider eliminating or seriously limiting alcohol, caffeine, fruit that hasn’t been peeled, dairy products, dried fruits, and foods with high sulfur content^[18].

Although high-fiber foods such as fresh fruits and vegetables and whole grains are generally excellent sources of nutrition, if you have ulcerative colitis, these foods may make your symptoms worse^[16]. Steer clear of nuts, seeds, corn and popcorn^[16].

Stay active

Exercising has many well-known benefits. But sometimes it can be tough to exercise, especially if you’re experiencing ulcerative colitis symptoms. If this is happening to you, you may find it best to limit exercise or consider low-impact activities like walking^[17].

Stress relief

Although stress does not cause ulcerative colitis, successfully managing stress levels may reduce the frequency of symptoms^[15]. Exercise has been proven to reduce stress and boost your mood. Relaxation techniques such as breathing exercises, meditation and yoga are good ways of teaching yourself to relax^[15].

Emotional support

Living with a long-term condition that’s as unpredictable and potentially debilitating as ulcerative colitis can have a significant emotional impact. In some cases, anxiety and stress caused by ulcerative colitis can lead to depression^[15].

You may find it useful to talk to others affected by ulcerative colitis, either face-to-face or via the internet. Living with ulcerative colitis can be frustrating and isolating, and talking to others with the condition can help^[15].

Fertility and pregnancy

The chances of a woman with ulcerative colitis becoming pregnant are not usually affected by the condition^[15]. But infertility can be a complication of surgery carried out to create an ileoanal pouch^[15].

The majority of women with ulcerative colitis who decide to have children will have a normal pregnancy and a healthy baby. But if you’re pregnant or planning a pregnancy, you should discuss it with your care team^[15].

If you become pregnant during a flare-up or have a flare-up while pregnant, there’s a risk you could give birth early (premature birth) or have a baby with a low birthweight. For this reason, doctors usually recommend trying to get ulcerative colitis under control before getting pregnant^[15].

Bowel cancer screening

You have a higher risk of getting bowel cancer if you have ulcerative colitis. It’s recommended that you have regular bowel cancer screening so any cancer can be found early, which may mean it’s easier to treat^[15].