Are you living with Ulcerative Colitis?

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Unpredictable ups and downs.

Ulcerative Colitis (UC) is a disease that causes long-term inflammation and sores (ulcers) in the large intestine (bowel). It is a type of inflammatory bowel disease (IBD), a group of disorders causing inflammation in the digestive tract. The symptoms – such as bloody diarrhea, abdominal pain, weight loss and fatigue – develop gradually, with times they are worse (flare-ups) and other times they improve (remission). Living with UC can be unpredictable. Flare-ups can greatly impact your work, school and social activities. You may feel anxious or fearful of the next bout of symptoms, or very isolated due to the stigma associated with it.

Although there is no known cure for UC, treatment aims to help reduce symptoms and prevent future flare-ups. Clinical researchers are seeking to better manage the disease and improve quality of life for people affected by it. Read on to learn more.

If you have UC, we would like to hear from you.

  • Take our brief online survey to be considered for an upcoming clinical trial.*
  • We also invite you to join our IBD Team online patient community to connect with others facing this condition.

*If you are eligible and choose to participate, you will receive all study-related care and study medication at no cost during your participation. Compensation for study-related travel costs may also be provided.

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Symptoms & Complications

What are the signs and symptoms of Ulcerative Colitis (UC)?

The signs, symptoms and severity of UC can vary greatly from one person to the next. The main symptoms include:

  • Diarrhea with blood or pus
  • Cramps and pain in the abdomen
  • Feeling an urgent need to pass a stool
  • Tiredness
  • Nausea or loss of appetite
  • Weight loss
  • Fever
  • Anemia (a reduced number of red blood cells)

What other signs and symptoms may I have with UC?

Because UC is an autoimmune disease, it can cause inflammation in other parts of the body as well. These “extra-intestinal manifestations” may affect:

  • Eyes (redness, pain, and itchiness)
  • Mouth (sores)
  • Joints (swelling and pain)
  • Skin (tender bumps, painful ulcerations and other sores/rashes)
  • Bones (osteoporosis)
  • Kidney (stones)
  • Liver (primary sclerosing cholangitis, hepatitis [inflammation] and cirrhosis [scarring])

What are the possible complications of UC?

For some people, UC may lead to other problems:

Man in the bathroom

  • Severe dehydration or malabsorption – resulting from excessive diarrhea and inflammation, preventing the large intestine from absorbing fluids and nutrients.
  • Toxic megacolon – a serious condition where the colon rapidly widens and swells.
  • Perforated colon – a hole in the colon, commonly caused by toxic megacolon.
  • Bleeding – from the sores, which can lead to anemia, or too few red blood cells, leading to extreme tiredness and weakness.
  • Osteoporosis (bone loss) – resulting from corticosteroids, which are used to treat UC.
  • Other diseases – people with UC are at a slightly greater risk for some other diseases, including colon cancer, blood clots, and primary sclerosing cholangitis (PSC) – where inflammation causes scars within the bile ducts, making them narrow, which can gradually lead to liver damage.

Sources: Mayo Clinic, CDC, NIDDK; Crohn’s and Colitis Foundation; and Crohn’s and Colitis UK.


Causes & Risk Factors

What causes Ulcerative Colitis (UC)?

The causes of UC are not fully known, but a combination of factors is believed to play a role:

UC diagram

  • Genetics – People with a close relative who has UC are more likely to develop it. This suggests genes may make you more susceptible to it.
  • Overactive immune system – The immune system malfunctions and attacks the intestines, leading to inflammation, possibly in response to a viral or bacterial infection, or due to an imbalance of bacteria in the intestines, or in response to “good” bacteria in the intestines.
  • Environment – Certain environmental factors may slightly increase the risk of developing UC, such as taking antibiotics or oral contraceptives. A high-fat diet may also slightly raise the risk.

Stress or certain foods may also trigger a flare-up of UC in some people, although these are not causes.

Who is at risk for developing UC?

Although anyone can get UC, it occurs more often in some people.

  • Age – People can develop UC at any age, but it is usually diagnosed between age 15 and 35 or after age 60.
  • Gender – Slightly more men than women tend to get UC.
  • Ethnicity – UC is more common in white people of European descent, in particular Ashkenazi Jews. In the US and UK, black people are also at higher risk. It is less common in people of Asian descent.
  • Where you live – People who live in Westernized countries are more likely to develop UC, suggesting that certain environmental factors, such as a diet high in fat or refined foods, may play a role. People living in northern climates also seem to be at greater risk.
  • Medications – Taking nonsteroidal anti-inflammatory drugs (NSAIDS) may be linked to an increased risk of developing UC, although recently studies have found no connection and further research is needed to confirm.

Sources: Mayo Clinic; NIDDK; NHS; Crohn’s and Colitis Foundation; Johns Hopkins


Diagnosis & Treatment

How is Ulcerative Colitis (UC) diagnosed?

Gastroenterologists (specialists in diseases of the digestive tract) use a variety of tests and procedures to diagnose UC and rule out other potential causes of inflammation. These may include:

  • Blood tests – to check for anemia (low red blood cells), low albumin (a liver protein) or signs of infection.
  • Stool (fecal) sample – to check for blood in the stool.
  • Colonoscopy – a procedure used to view the entire colon using a thin, flexible, lighted tube with an attached camera. During the procedure, a biopsy (tissue sample) may also be taken for evaluation.
  • Sigmoidoscopy – a procedure used to examine the rectum and sigmoid (the last portion of the colon) with a slender, flexible, lighted tube.
  • X-ray – taken of the abdominal area to check for certain problems such as a perforated colon.
  • Computerized tomography (CT) scan – to check for problems with any part of the entire bowel, or tissues outside the bowel, including the small intestines.
  • Magnetic resonance imaging (MRI) – may be used for evaluating a fistula around the anal area (pelvic MRI) or the small intestine (MR enterography).

Sources: Mayo Clinic; NHS; American Society for Gastroenterological Endoscopy; Crohn’s and Colitis Foundation

How is UC treated?

There is no known cure for UC. Treatment is aimed at relieving the symptoms and preventing future flare-ups or complications. Some people are treated with a combination of medicines.

Medicine

Medicines used to treat UC include:

  • Anti-inflammatories – such as aminosalicylates or mesalazines, given by mouth, enemas or suppositories.
  • Immunosuppressants – such as corticosteroids or azathioprine, used to “turn down” the immune system response.
  • Biologics – specially developed medicines given as shots (injection) or as intravenous infusions (IV) that target a specific part of the immune system.

Other medicines used for problems related to UC may include:

  • Iron supplements – to treat anemia resulting from excessive diarrhea and bleeding.
  • Pain relievers – such as acetaminophen or paracetamol (but not NSAIDs, which may worsen symptoms).
  • Anti-diarrheal medicines – such as loperamide, for severe diarrhea (these must be used cautiously in people with UC so as to avoid toxic megacolon).
  • Antibiotics – used to treat or prevent an infection.

Surgery:

For more severe UC, surgery may be needed. One procedure involves the removal of the large intestine, leaving the small intestine to pass waste out of the body. Sometimes a pouch called a J-pouch is created to allow stool to pass normally from the small intestine through the anus. Another option (called an ileostomy) diverts the small intestine out of a hole made in the abdomen, where special bags are placed to collect waste materials. Together, you and your surgeon will determine which approach is best for your situation.

Lifestyle changes:

Choosing water

  • Diet: It is recommended that people living with UC eat a healthy and balanced diet. It may be helpful to avoid foods that may irritate your gastrointestinal tract. Suggestions during flare-ups include:
    • Take time to eat your meals slowly
    • Eat smaller meals at more frequent intervals
    • Eat bland, soft foods rather than raw vegetables, spicy or high-fiber foods
    • Limit consumption of milk and choose lactose-free dairy products
    • Drink plenty of water to stay hydrated
    • It’s also a good idea to get checked for mineral or vitamin deficiencies
  • Exercise: Getting regular exercise can help with managing fatigue and keeping a positive outlook. Current research is looking into which types of exercise may have the greatest positive effect, but it is best to speak with your doctor to determine which exercise, and amount, is right for you. During a flare-up, if you are feeling fatigued, you may need to ease up on your regular exercise plan until you feel better.

Clinical Trials: Clinical trials are helping medical researchers better understand, diagnose and treat UC in the future. Learn more.

Sources: Crohn’s & Colitis UK; Crohn’s and Colitis Foundation of America


Resources

Woman using laptop to find answers

The symptoms of Ulcerative Colitis (UC) can make you feel awkward, frustrated, anxious or distressed. Several resources are available to help provide helpful tips on how to handle certain situations, a few of which are listed below:

  • For more about foods and diet, see the Crohn’s and Colitis UK’s leaflet, Food – Your Guide
  • Tips on Daily Life With Ulcerative Colitis are available from the Crohn’s and Colitis Foundation of America’s website.
  • Crohn’s & Colitis UK offers an online tool called IBD Companion to help anyone diagnosed with IBD explore a number of topics and find information, guidance and support.
  • An Open Letter on HealthCentral gives a spouse’s perspective on what it’s like to be in a relationship with someone who has Ulcerative Colitis.
  • A brochure on Managing Flares by the Crohn’s and Colitis Foundation of America is available as a PDF download, including coping tips and resources for help coping with a flare-up of IBD symptoms.
  • World IBD Day takes place on 19th May every year to help raise awareness about IBD and unite people worldwide in their fight against Crohn’s Disease and Ulcerative Colitis. The website provides links to national organizations and related events around the world.

Clinical Trials – Learn More

Clinical trials are investigating potential treatments for people with Ulcerative Colitis (UC). They are often seeking volunteers to take part.

If you are eligible and choose to participate, you will receive all study-related care and study medication at no cost during your participation.

Have you considered taking part in a clinical trial for people with UC?

Potential benefits of participating in a clinical trial include:

  • Close care and monitoring by a study doctor and staff throughout the study
  • No cost for study treatment, related tests and procedures
  • Contribute to our understanding of the treatment options for UC in the future

If you would like to be considered for an upcoming clinical trial in UC, take our survey.

Please take some time to answer a few questions and be considered for an upcoming clinical trial for people with UC. We also invite you to join our IBD Team community to connect with others affected by the disease.

Take Survey

Thank you for sharing with us.

If you would like to be notified about an upcoming clinical trial, you may sign up at the end of our survey.