Ulcerative Colitis (Pancolitis): Causes, Symptoms, and Treatments

Ulcerative Colitis (Pancolitis)

What is ulcerative colitis?

Ulcerative colitis (UC) causes irritation and ulcers (open sores) in the large intestine (also called the colon). It belongs to a group of conditions called inflammatory bowel disease (IBD). It often causes diarrhea with blood, cramping and urgency. Sometimes these symptoms can wake a person up at night to go to the bathroom as well.

The inflammation in ulcerative colitis usually starts in the rectum, which is close to the anus (where poop leaves your body). The inflammation can spread and affect a portion of, or the entire colon. When the inflammation occurs in the rectum and lower part of the colon it is called ulcerative proctitis. If the entire colon is affected it is called pancolitis. If only the left side of the colon is affected it is called limited or distal colitis.

The severity of UC depends on the amount of inflammation and the location. Everyone is a little different. You could have severe inflammation in the rectum (small area) or very mild inflammation in the entire colon (large area).

If you have ulcerative colitis, you may notice a pattern of flare-ups (active disease), when symptoms are worse. During times of remission, you might have little to no symptoms. The goal with therapy is to remain in remission as long as possible (years).

About half of the people diagnosed with ulcerative colitis have mild symptoms. Others suffer frequent fevers, bloody diarrhea, nausea and severe abdominal cramps. Ulcerative colitis may also cause problems such as arthritis, inflammation of the eye, liver disease and osteoporosis. It is not known why these problems occur outside the colon. Scientists think these complications may be the result of inflammation triggered by the immune system. Some of these problems go away when the colitis is treated.

Ulcerative colitis can occur in people of any age, but it usually starts between the ages of 15 and 30, and less frequently between 50 and 70 years of age. It affects men and women equally and appears to run in families, with reports of up to 20% of people with ulcerative colitis having a family member or relative with ulcerative colitis or Crohn’s disease. In addition, about 20% of patients are diagnosed before they are 20 years old and it can occur in children as young as two years of age.

What’s the difference between colitis and ulcerative colitis?

Colitis means your colon is inflamed, or irritated. This can be caused by many things, such as infections from viruses or bacteria. Ulcerative colitis is more severe because it is not caused by an infection and is lifelong.

How common is ulcerative colitis?

Ulcerative colitis isn’t an uncommon condition. Together with Crohn’s disease, another type of inflammatory bowel disease, it affects up to 1 in 250 people in North America and Europe.

Who gets ulcerative colitis?

• Anyone at any age, including young children, can get ulcerative colitis. Your chance of getting it is slightly higher if you:
• Have a close relative with inflammatory bowel disease (IBD).
• Are between 15 and 30 years old, or older than 60.
• Are Jewish.
• Eat a high-fat diet.
• Use frequent nonsteroidal anti-inflammatory drugs (NSAIDS) like ibuprofen (Advil® or Motrin®).

What causes ulcerative colitis?

Researchers think the cause of ulcerative colitis is complex and involves many factors. They think it’s probably the result of an overactive immune response. The immune system’s job is to protect the body from germs and other dangerous substances. But, sometimes your immune system mistakenly attacks your body, which causes inflammation and tissue damage.

What are the symptoms of ulcerative colitis?

Ulcerative colitis symptoms often get worse over time. In the beginning, you may notice:

• Diarrhea or urgent bowel movements
• Abdominal (belly) cramping
• Tiredness
• Nausea
• Weight loss
• Anemia (reduced number of red blood cells)

Later you may also have:

• Blood, mucous, or pus in bowel movements
• Severe cramping
• Fever
• Skin rashes
• Mouth sores
• Joint pain
• Red, painful eyes
• Liver disease.
• Loss of fluids and nutrients.

Symptoms are similar in pediatric ulcerative colitis and may also include delayed or poor growth. Some ulcerative colitis symptoms in children can mimic other conditions, so it is important to report all symptoms to your pediatrician.

How is ulcerative colitis diagnosed?

To diagnose ulcerative colitis in children, teenagers and adults, your healthcare provider has to rule out other illnesses. After a physical exam, your provider may order:

Blood tests: Your blood can show signs of infection or anemia. Anemia is a low level of iron in your blood. It can mean you have bleeding in the colon or rectum.
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 have tests including a magnetic resonance imaging (MRI) scan or computed tomography (CT) scan.

Endoscopic tests: An endoscope is a thin, flexible tube with a tiny camera. Specialized doctors can slide the endoscope in through the anus to check the health of the rectum and colon. Common endoscopic tests include colonoscopy and sigmoidoscopy.

Who diagnoses ulcerative colitis?

If you have symptoms of ulcerative colitis, your regular healthcare provider will probably refer you to a specialist. A gastroenterologist — a doctor who specializes in the digestive system — should oversee the care for adults. For young patients, a pediatric gastroenterologist who specializes in children should manage the care.

How is ulcerative colitis treated?

There’s no cure for ulcerative colitis, but treatments can calm the inflammation, help you feel better and get you back to your daily activities. Treatment also depends on the severity and the individual, so treatment depends on each person’s needs. Usually, healthcare providers manage the disease with medications. If your tests reveal infections that are causing problems, your healthcare provider will treat those underlying conditions and see if that helps.

The goal of medication is to induce and maintain remission, and to improve the quality of life for people with ulcerative colitis. Healthcare providers use several types of medications 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 less diarrhea. For children, teenagers and adults, your provider may recommend:

Aminosalicylates: For mild to moderate ulcerative colitis, your healthcare provider may prescribe sulfasalazine (Azulfidine®). Let your provider know if you’re allergic to sulfa. He or she can prescribe a sulfa-free aminosalicylate instead, such as mesalamine (Canasa®, Delzicol®, Asacol® HD, Pentasa®, Lialda®, Apriso®). The medications come in both pill form and enema or suppository form, which can better reach the inflammation low down in the colon or rectum.

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. Other medications will be used to help maintain the remission.

Immunomodulators: Your healthcare provider may recommend an immunomodulator. These medicines include 6-mercaptopurine (Purixan®, Purinethol®), azathioprine (Azasan® and Imuran®), or methotrexate (Trexall®). These medications help calm the overactive immune system.

Biologics: Biologics treat moderate to severe ulcerative colitis by targeting parts of the immune system to quiet it down. Medications like infliximab (Remicade®), adalimumab (Humira®), golimumab (Simponi®), certolizumab pegol (Cimzia ®), vedolizumab (Entyvio®), and ustekinumab (Stelara®) are biologics.
Janus kinase (JAK) inhibitors: Drugs like tofacitinib (Xeljanz®) stop one of your body’s enzymes (chemicals) from triggering inflammation.

Children and young teenagers are prescribed the same medications. In addition to medications, some doctors also recommend that children take vitamins to get the nutrients they need for health and growth that they may not have gotten through food due to the effects of the disease on the bowel. Ask your healthcare provider for specific advice about the need for vitamin supplementation for your child.

You might need surgery that removes your colon and rectum to:

• Avoid medication side effects.
• Stop uncontrollable symptoms.
• Prevent or treat colon cancer (people with ulcerative colitis are at greater risk).
• Eliminate life-threatening complications such as bleeding.

Can I get surgery for my ulcerative colitis?

Surgery is an option if medications aren’t working or you have complications, such as bleeding or abnormal growths. You might develop precancerous lesions, or growths that can turn into colorectal cancer. A doctor can remove these lesions with surgery (a colectomy) or during a colonoscopy.

Research shows that about 30% of people with ulcerative colitis need surgery sometime during their life. About 20% of children with ulcerative colitis will need surgery during their childhood years.

There are two kinds of surgery for ulcerative colitis:

Proctocolectomy and ileoanal pouch

The proctocolectomy and ileoanal pouch (also called J-pouch surgery) is the most common procedure for ulcerative colitis. This procedure typically requires more than one surgery, and there are several ways to do it. First, your surgeon does a proctocolectomy — a procedure that removes your colon and rectum. Then the surgeon forms an ileoanal pouch (a bag made from a part of the small intestine) to create a new rectum. While your body and newly made pouch is healing, your surgeon may perform a temporary ileostomy at the same time. This creates an opening (stoma) in your lower belly. Your small intestines attach to the stoma, which looks like a small piece of pink skin on your belly.

After you heal, waste from your small intestines comes out through the stoma and into an attached bag called an ostomy bag. The small bag lies flat on the outside of your body, below your beltline. You’ll need to wear the bag at all times to collect waste. You’ll have to change the bag frequently throughout the day.

Your medical team will teach you how to care for the stoma and empty the attached bag. You can also use a fabric cover for the pouch so that even when you’re undressed, the waste isn’t visible. With proper care, the pouch doesn’t smell and isn’t noticeable under clothes.

Once you and the ileoanal pouch have healed, your surgeon will discuss taking down the ileostomy.

Your new ileoanal pouch still collects stool. That allows waste to exit your body through your anus as it would normally. Afterward, because you have less space in your large intestine to store poop, you’ll have frequent bowel movements (on average four to eight times a day once your body has adjusted). But you should feel a lot better when you recover from the surgery. The pain and cramping from ulcerative colitis should be gone.

Proctocolectomy and ileostomy

If an ileoanal pouch won’t work for you, your healthcare team might recommend a permanent ileostomy (without an ileoanal pouch). Your surgeon does a proctocolectomy to remove your colon and rectum. The second part of this surgery, done at the same time, is to perform a permanent ileostomy (as described above).

What causes ulcerative colitis flareups?

When you’re in remission from ulcerative colitis, you’ll want to do everything you can to prevent a flareup. Things that may cause a flareup include:

Emotional stress: Get at least seven hours of sleep a night, exercise regularly and find healthy ways to relieve stress, such as meditation.
NSAID use: For pain relief or a fever, use acetaminophen (Tylenol®) instead of NSAIDs like Motrin® and Advil®.

Antibiotics: Let your healthcare provider know if antibiotics trigger your symptoms.

What role does diet and nutrition play in ulcerative colitis?

Diet does not cause the development of ulcerative colitis nor can any special diet cure the disease. However, the foods you or your child eat may play a role in managing symptoms and lengthening the time between flareups.

Some foods may make symptoms worse and should be avoided, especially during flareups. Foods that trigger symptoms are different from person to person. To narrow down what foods affect you, keep track of what you eat each day and how you feel afterward (a food journal).

Problem foods often include:

• Greasy foods
• High sugar foods and drinks
• Carbonated beverages
• High-fiber foods
• Alcohol

In addition to the problem foods listed above, infants, children and teenagers can also experience issues with:

• Salt
• Dairy products

Keep a careful eye on your child’s diet and nutrition. Their appetite may decrease during a flareup and they might not eat enough to stay healthy, and grow. Also, the inflammation caused by ulcerative colitis may keep their digestive tract from absorbing enough nutrients. This can also affect your child’s health. For these reasons, you may have to increase the amount of calories your child consumes.

It’s best to work with your provider and nutritionist to come up with a personalized diet plan if you or your child has ulcerative colitis.

What can I expect if I have a diagnosis of ulcerative colitis?

Ulcerative colitis is a lifelong condition that can have mild to severe symptoms. For most people, the symptoms come and go. Some people have just one episode and recover. A few others develop a nonstop form that rapidly advances. In up to 30% of people, the disease spreads from the rectum to the colon. When both the rectum and colon are affected, ulcerative symptoms can be worse and happen more often.

You may be able to manage the disease with medications. But surgery to remove your colon and rectum is the only “cure.” About 30% of people with ulcerative colitis need surgery.

When should I call my doctor about my ulcerative colitis?

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

What is the best diet for ulcerative colitis?

There’s no single diet that works best for ulcerative colitis. If the disease damages the lining of the colon, your body might not absorb enough nutrients from food. Your healthcare provider may recommend supplemental nutrition or vitamins. It’s best to work with your provider and nutritionist to come up with a personalized diet plan.

How often do I need a colonoscopy?

Especially when you have symptoms or are just starting or changing medications, your doctor may want to periodically look at the inside of the rectum and colon to make sure the treatments are working and the lining is healing. How often this is needed is different for each person.

Ulcerative colitis also increases your chance of developing colon cancer. To look for early cancer signs, your healthcare provider may have you come in for a colonoscopy (a procedure to check the health of the colon) every one to three years.

How does pediatric ulcerative colitis affect my child’s mental/emotional health?
Like many conditions, ulcerative colitis can have a negative psychological effect, especially on children. They can experience physical, emotional, social and family problems. Because of the medications and/or general stress from the situation, your child may experience:

• Mood swings
• Teasing from classmates
• Anger, embarrassment and frustration
• Worry about appearance and physical stamina
• Vulnerability because their body doesn’t function normally
• Poor concentration
• Misunderstandings with friends and family

Children need mutual support from all family members. It’s helpful for the entire family to learn about the disease and try to be empathetic. Seek out a psychiatrist and therapist to help your child manage such challenges of their ulcerative colitis.

Does ulcerative colitis make you immunocompromised?

Ulcerative colitis doesn’t make you immunocompromised. Some of the medicines that treat it may change the way your immune system responds. This change is different for each medication. Some of these changes may increase the risk of certain infections or other issues. A discussion with your health care team before starting a medication is the best way to understand these risks and ways to prevent them.

What should I ask my doctor?

If you have ulcerative colitis, you may want to ask your healthcare provider:

• How much of my large intestine is affected?
• What risks or side effects can I expect from the medication?
• Should I change my diet?
• Will ulcerative colitis affect my ability to get pregnant?
• What can I do at home to manage my symptoms?
• What are my surgical options?
• What should I ask my doctor on behalf of my child or teenager?

Ask your healthcare provider the following questions in addition to the ones listed above:

• What vitamins should my child take?
• Will my other children have pediatric ulcerative colitis?
• Is my child at risk for other conditions?
• Can you recommend a psychiatrist or therapist to help my child with emotional issues related to pediatric ulcerative colitis?
• Is my child growing at a normal rate?
• What can I do to help my child cope at school?