Ulcerative Colitis

What is ulcerative colitis (UC)?

Ulcerative colitis (UC) is a lifelong condition that causes inflammation and ulcers inside your colon (large intestine). UC is one of the most common types of inflammatory bowel disease (IBD), alongside Crohn’s disease. UC often causes bloody diarrhea and abdominal cramping. It may make you have to poop more.

Most people with UC experience periods when they experience symptoms (flare-ups), followed by longer periods of no symptoms (remission).

Types of ulcerative colitis

Healthcare providers classify UC based on where the inflammation is in your colon. The inflammation usually starts in your rectum, which is close to your anus (butthole). The inflammation can spread and affect all or part of your colon. Types include:

• Ulcerative proctitis: Inflammation affects your rectum.
• 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.

UC may be mild, moderate or severe, depending on your symptoms. The most severe form, fulminant ulcerative colitis, is rare. It can cause life-threatening complications that require urgent medical treatment.

How common is ulcerative colitis?

Together with Crohn’s disease, another type of inflammatory bowel disease, UC affects up to 1 in 250 people in North America and Europe. According to the National Institute of Diabetes and Digestive and Kidney Diseases (U.S.), up to 900,000 people in the U.S. are living with UC.

What are the symptoms of ulcerative colitis?

Ulcerative colitis symptoms often get worse over time. In the beginning, you may notice signs of mild UC, including:

• 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 UC, including:

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

About half of people have mild symptoms during flare-ups. Others experience frequent fevers, bloody diarrhea, nausea and severe abdominal cramps.

Other UC symptoms

About 25% of people with UC eventually develop conditions and associated symptoms that affect body parts other than their colon. The inflammation can spread to your bones, joints, eyes, skin and liver.

Symptoms include:

• Joint pain and swelling.
• Red, burning or itchy eyes.
• Painful bumps, rashes or ulcers on your skin.

What causes ulcerative colitis?

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. Your immune system’s job is to protect your body from germs and other dangerous substances. But sometimes, your immune system mistakenly attacks your body, which causes inflammation and tissue damage.

Risk factors

Anyone can get ulcerative colitis, but your risk is greater based on your:

• Age: Most people get diagnosed between 15 and 30 years old or when they’re older than 60.
• Race and ethnicity: You’re at greater risk of UC if you’re white, especially if you’re of Ashkenazi Jewish descent.
• Genetics: You’re more likely to develop UC if a first-degree relative (parent, sibling or child) has it. Up to 20% of people with UC have a family member with UC or Crohn’s disease.
• Gut microbiome. Your gut microbiome consists of bacteria, viruses and fungi in your digestive system. Think of it as your gut’s ecosystem. People with UC have differences in their microbiomes when compared to people without. Researchers aren’t sure why.

Other factors, like stress and your diet, don’t increase your risk of developing UC, but they can trigger a symptom flare-up. One of the best things you can do if you’re diagnosed with UC is to note your triggers so you can avoid them.

What are the complications of ulcerative colitis?

Having ulcerative colitis raises your risk of developing other conditions that may require additional monitoring and treatment, including:

• Anemia: Severe bleeding from your colon can cause anemia, or a reduced number of red blood cells.
• Colon cancer: UC increases your risk of developing colon cancer. Your risk depends on where in your colon the inflammation is (with proctitis posing the least risk) and how long you’ve had UC. Discuss your risk factors with your provider.
• Osteoporosis: The inflammation can spread to your bones and joints, causing bone weakening or osteoporosis.
• Primary sclerosing cholangitis: Inflammation that spreads to your liver can cause primary sclerosing cholangitis, a condition that causes liver scarring. The damaged tissue can prevent your liver from working as it should.
• Growth and development issues in children: UC can limit a child’s colon function, so they can’t absorb key nutrients needed for growth and development. In addition to taking medicine to treat UC, your child may need vitamins to get the nutrients their bodies need.

Emergency complications of UC that require immediate treatment in the ER include:

• Dehydration: Frequent trips to the bathroom can deplete your body of the fluids it needs (dehydration). You may need IV fluids in the hospital if your dehydration is severe.
• Perforation: A hole in your colon (perforation) is a medical emergency, requiring immediate treatment.
• Severe bleeding: Depending on your blood loss, you may need a blood transfusion.
• Toxic megacolon: Severe inflammation can cause your colon to stop working. When this happens, the materials inside your colon build up, expanding your colon walls while toxins seep into your bloodstream. This rare complication is called toxic megacolon. It most commonly occurs alongside fulminant ulcerative colitis.
• Blood clots: UC increases the risk of clotting in your blood vessels (veins, arteries and capillaries). These clots can be life-threatening, depending on where they are.

How is ulcerative colitis diagnosed?

To diagnose UC, your healthcare provider will perform a physical exam and ask about your symptoms and family history of IBD. They’ll order tests and perform procedures to rule out conditions similar to UC.

Tests and procedures include:

• Blood tests: Your blood can show signs of anemia, which may mean you have bleeding in your colon or rectum. Blood tests can also help providers rule out other causes of your symptoms, like an infection.
• Stool samples: Signs of infection, parasites (tiny organisms that can live in a person’s body) and inflammation can show up in your poop.
• Imaging tests: Your healthcare provider may need a picture of your colon and rectum. You may need a specialized type of X-ray called a barium enema to reveal signs of inflammation in your colon. A CT scan (computed tomography scan) and MRI (magnetic resonance imaging) can show signs of inflammation in your colon, especially with moderate and severe UC. An X-ray can show complications like megacolon or perforation.
• Endoscopic tests: An endoscope is a thin, flexible tube with a tiny camera. Your provider can insert the endoscope through your rectum to see inside your colon and take tissue samples for testing (biopsy). Common endoscopic tests to diagnose UC include colonoscopy and sigmoidoscopy.

How is ulcerative colitis treated?

The goal of treatment is to put you into remission if you’re experiencing a flare-up or help you maintain remission if you’re not currently experiencing symptoms. Treatment options include medications and surgery.

Medications

Healthcare providers use several medications (alone or in combination) to calm inflammation in your large intestine. Reducing the swelling and irritation lets the tissue heal. It can also relieve your symptoms so you have less pain and diarrhea.

Medications for UC include:

• Aminosalicylates: Your healthcare provider may prescribe sulfasalazine (Azulfidine®) for mild to moderate ulcerative colitis. Let your provider know if you’re allergic to sulfa. They can prescribe a sulfa-free aminosalicylate instead, such as mesalamine (Canasa®, Delzicol®, Asacol® HD, Pentasa®, Lialda®, Apriso®).
• Corticosteroids: If you have a severe form of ulcerative colitis, you may need a corticosteroid such as prednisone (Deltasone®) or budesonide (Entocort® EC, Uceris®). Because corticosteroids have serious side effects, healthcare providers only recommend them for short-term use.
• Immunosuppressants: Your healthcare provider may recommend an immunosuppressant to calm your immune system. These medicines include 6-mercaptopurine (Purixan®, Purinethol®), azathioprine (Azasan® and Imuran®) or methotrexate (Trexall®).
• Biologics: Biologics treat moderate to severe ulcerative colitis by calming parts of your immune response. Medications like infliximab (Remicade®), adalimumab (Humira®), golimumab (Simponi®), certolizumab pegol (Cimzia ®), vedolizumab (Entyvio®) and ustekinumab (Stelara®) are biologics.
• Janus kinase (JAK) inhibitors (small molecule drugs): Drugs like tofacitinib (Xeljanz®) stop one of your body’s enzymes (chemicals) from triggering inflammation. Upadacitinib (RinvoQ®) is another JAK inhibitor.

Surgery

Surgery is an option if medications aren’t working or if you’re experiencing serious complications. About 30% of people with ulcerative colitis need surgery at some point. About 20% of children with ulcerative colitis will need surgery.

There are two kinds of surgery for ulcerative colitis. Both involve a proctocolectomy, surgery to remove all or part of your colon and rectum.

• Proctocolectomy and ileal pouch: The proctocolectomy and ileal pouch is the most common procedure for ulcerative colitis. This procedure removes your colon and rectum but leaves your anus intact. Then, the surgeon forms an ileal pouch, a section of small intestine that attaches to your anus. Once you’ve healed, this section of your small intestine acts as a new rectum that allows you to poop as you typically would.
• Proctocolectomy and ileostomy: If an ileal pouch isn’t an option, your healthcare team might recommend a permanent ileostomy (without an ileal pouch). Your surgeon removes your colon, rectum and anus. They make an opening in your belly that attaches to a pouch outside your body (ileal stoma) that collects poop. You’ll empty the bag regularly.

How can I prevent ulcerative colitis flare-ups?

You can reduce your likelihood of a flare-up by identifying and avoiding your triggers. Tips for avoiding common triggers include:

• Managing stress: Get at least seven hours of sleep a night, exercise regularly and find healthy ways to relieve stress, such as meditation.
• Avoid NSAIDs: For pain relief or a fever, use acetaminophen (Tylenol®) instead of NSAIDs like Motrin® and Advil®. NSAIDs can worsen ulcerative colitis symptoms.
• Avoid foods that trigger flare-ups: No single meal plan prevents flare-ups. Your food triggers may be different from someone else’s. Still, many people find it helpful to avoid dairy and high-fiber foods. Work with your provider to develop a personalized meal plan to avoid trigger foods without depriving yourself of essential nutrients.

It’s a good idea to note your triggers in a diary you can share with your provider. Together, you can work on strategies to avoid things that may cause a flare-up.

What can I expect if I have ulcerative colitis?

A few people have one flare-up and never have another. Others have chronic symptoms that are difficult to manage. Most people have symptoms that come and go, with periods of flare-ups and longer periods of remission. In up to 30% of people, ulcerative symptoms worsen and happen more often. Eventually, they’ll need surgery.

Most people manage UC by avoiding triggers and taking medicines regularly to prevent inflammation. You’ll also need frequent provider visits to monitor your health. For example, depending on your risk, you may need regular colonoscopies to screen for colon cancer. Your provider can advise you.

Does ulcerative colitis ever go away?

The only “cure” for UC is surgery to remove your colon and rectum. Still, most people can manage UC with medications or surgery. With UC treatment, the goal is achieving and maintaining remission. Your healthcare provider can help you get there.

When should I call my doctor about my ulcerative colitis?

Call your healthcare provider immediately if you have:

• Heavy, persistent diarrhea.
• Blood leaking from your anus with clots of blood in your stool.
• Constant pain and a high fever.

What should I ask my healthcare provider?

Questions to ask include:

• How does the type of UC I have affect my prognosis (outcome)?
• What’s my risk of experiencing complications from UC?
• What treatments do you recommend?
• What risks or side effects can I expect from treatment?
• How can I change my lifestyle to prevent flare-ups?
• What can I do at home to manage symptoms of a flare-up?