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Ulcerative Colitis

What is ulcerative colitis?

Ulcerative colitis is part of a group of diseases called inflammatory bowel disease (IBD).

It's when the lining of your large intestine (the colon or large bowel) and your rectum become red and swollen (inflamed). In most cases, the inflammation begins in your rectum and lower part of your large intestine and slowly moves up to affect the whole colon.

Ulcerative colitis doesn't normally affect the small intestine. But it can affect the lower part of your small intestine called the ileum.

The inflammation causes diarrhea, making your colon empty itself often. As the cells on the lining of the colon die and come off, open sores (ulcers) form. These ulcers may cause pus, mucus, and bleeding.

In most cases, ulcerative colitis starts between ages 15 and 30. Sometimes children and older people get it. It affects both men and women. It seems to run in some families (hereditary).

Ulcerative colitis is a long-term (chronic) disease. There may be times when your symptoms go away and you're in remission for months or even years. But the symptoms will come back.

If only your rectum is affected, your risk for colon cancer isn't higher than normal. Your risk is higher than normal if the disease affects part of your colon. The risk is greatest if it affects your whole colon.

What causes ulcerative colitis?

Experts don’t know what causes ulcerative colitis. Some of the causes that may contribute to ulcerative colitis are:

  • Genetic causes. People who have a parent, sibling, or child with ulcerative colitis have a 4-times higher risk of developing the disease.
  • Infections. A virus or bacteria may affect the system in the body that fights infection (immune system). The immune system may create abnormal redness and swelling (inflammation) in the intestinal wall that doesn't go away.
  • Autoimmunity. Many people with ulcerative colitis have abnormal immune systems. But experts don’t know if immune problems cause the disease. They also don’t know if ulcerative colitis may cause immune problems.
  • Imbalance of your gut microflora. These are the good bacteria that are present in your large intestine (colon). They help with the digestion of food. An imbalance between gut microflora and your immune system can produce an abnormal immune response. This can lead to inflammation and damage to the colon's lining.

Having stress or being sensitive to some foods doesn't seem to cause ulcerative colitis.

Right now, there is no cure except for surgery to remove the colon. But good treatments are available to manage the inflammation and symptoms.

Who is at risk for ulcerative colitis?

Some things may make you at higher risk for ulcerative colitis. These include your:

  • Age. The disease most often starts when you're between ages 15 and 30.
  • Family history. Having a family member or close blood relative with ulcerative colitis raises your risk for the disease.
  • Race and ethnicity. It happens more often in white people and people of Jewish descent.

What are the symptoms of ulcerative colitis?

Each person’s symptoms may vary. The most common symptoms include:

  • Belly pain.
  • Bloody diarrhea.
  • Feeling a constant urge to have a bowel movement even though your bowel may be empty.
  • Extreme tiredness (fatigue).
  • Weight loss.
  • Loss of appetite.
  • Rectal bleeding.
  • Loss of body fluids and nutrients.
  • Loss of blood (anemia) caused by severe bleeding.

In some cases, symptoms may also include:

  • Skin sores.
  • Joint pain.
  • Redness and swelling (inflammation) of the eyes.
  • Liver disorders.
  • Weak and brittle bones (osteoporosis).
  • Rashes.
  • Kidney stones.

These symptoms may be caused by other health problems. Always see your health care provider to be sure.

How is ulcerative colitis diagnosed?

Your health care provider will give you a physical exam. You'll have some blood tests. The blood tests will check the amounts of your red blood cells and white blood cells. If your red blood cell count is low, this is a sign of anemia. If your white blood cell count is high, this can be a sign of infection or inflammation.

Other tests for ulcerative colitis include:

  • Stool sample test. Some stool tests check for any abnormal bacteria or parasites in your digestive tract that may cause diarrhea and other problems. To do this, a small stool sample is taken and sent to a lab. In 2 to 3 days, the test will show if there's any abnormal bacteria or parasites. Other stool tests check for inflammation in the colon that would suggest ulcerative colitis. The stool may also be checked for a protein called fecal calprotectin. If it's present, there is inflammation. It is most often higher in ulcerative colitis and other inflammatory bowel diseases.
  • Upper endoscopy. This is also called EGD (esophagogastroduodenoscopy). This test looks at the inside or lining of your food pipe (esophagus), stomach, and the top part of your small intestine (duodenum). This test uses a thin, lighted tube, called an endoscope. The tube has a camera at one end. The tube is put into your mouth and throat. Then it goes into your esophagus, stomach, and duodenum. Your provider can see the inside of these organs. They can also take a small tissue sample (biopsy) if needed.
  • Colonoscopy. This test looks at the full length of your large intestine. It can help check for any abnormal growths, tissue that's red or swollen, sores (ulcers), or bleeding. A long, flexible tube with a light is put into your rectum and up into your colon. This tube is called a colonoscope. The tube lets your provider see your colon lining and take out a tissue sample (biopsy) to test it. They may also be able to treat some problems that may be found.
  • Flexible sigmoidoscopy. This is a special type of endoscope to view the lining of your rectum and lower colon.
  • Biopsy. Your provider will take out a tissue sample or cells from the lining of your colon. This will be checked under a microscope.
  • Lower GI (gastrointestinal) series. This is also called a barium enema. This is an X-ray exam of your rectum, the large intestine, and the lower part of your small intestine (the ileum). You'll be given a fluid called barium. Barium coats the organs so they can be seen on an X-ray. The barium is put into a tube and inserted into your rectum as an enema. An X-ray of your belly will show if you have any narrowed areas (strictures), blockages, or other problems. This test is not often done anymore.
  • Blood tests. Blood tests cannot diagnose or rule out ulcerative colitis. But some blood tests can help keep track of the disease. They can detect a sudden (acute) flare-up. In most cases, signs of inflammation are higher during an acute flare-up. These can include ESR, C-reactive protein, and white blood cell counts (leukocytosis).

How is ulcerative colitis treated?

Treatment will depend on your symptoms, age, and general health. It will also depend on how bad the condition is. And it will depend on if you're pregnant or planning a pregnancy.

There is no special diet for ulcerative colitis. But you may be able to manage mild symptoms by not eating foods that seem to upset your intestines.

Medical treatment is aimed at reducing symptoms and bringing about a remission.

Your treatment plan may include:

  • Medicines. Medicines that reduce redness and swelling (inflammation) in your colon may help to ease your symptoms. More serious cases may need other medicines, such as steroids, medicines that fight bacteria (antibiotics), or medicines that affect your immune system. If you have a moderate to severe case, your health care provider might add biologics medicines or small molecule drugs to your treatment plan. Steroids aren't a good choice for long-term treatment. They can affect your bone health and make infections more likely. Your provider will talk with you about medicines for long-term control. This may include pills, shots (injections), or both. Placing a medicine into the rectum (foam, enema, or suppository) can help control symptoms.
  • Fecal microbiota transplantation. This procedure puts healthy bacteria into the GI tract.
  • Time in the hospital. This may be needed if you have severe symptoms. The goal will be to give you the nutrients you need, stop diarrhea, and replace lost blood, fluids, and electrolytes (minerals). You may need a special diet, I.V. (intravenous) feedings, medicines, or sometimes surgery.
  • Surgery. Some people may need surgery to remove their colon. That might happen if you have heavy bleeding, are very weak after being ill for a long time, have a hole (perforation) in your colon, or are at increased risk for cancer. You may also need surgery if other treatment fails. Or you may need surgery if you can't handle the side effects of your medicines or if the side effects are harmful.

There are several types of surgery, including:

  • Proctocolectomy with ileostomy. This is the most common surgery. It's done when other treatment doesn't help or you are at high risk of colon cancer. Your whole colon and your rectum are removed. A small opening (stoma) is made in your belly wall. The bottom part of your small intestine (the ileum) is attached to the new opening. Your stool will come out of this opening. It will collect in a drainage bag that will be attached to your body.
  • Ileoanal anastomosis. Your whole colon and the diseased lining of your rectum are removed. The outer muscles of your rectum stay in place. The bottom part of your small intestine (the ileum) is attached to the opening of your anus. A pouch is made out of the ileum. The pouch holds stool. This lets you pass stool through your anus in the normal way. You will still have fairly normal bowel movements. But your bowel movements may happen more often. They may also be more watery than normal.

If your colon remains inside, you'll need routine colonoscopies.

Recommended screenings. The American College of Gastroenterology has guidelines on preventive care in patients with ulcerative colitis. These include:

  • A follow-up colonoscopy every 1 to 2 years. This is because of your increased risk of colon cancer.
  • A cervical cancer screening every year for women with ulcerative colitis.

What are the possible complications of ulcerative colitis?

Ulcerative colitis is a long-term condition. It can lead to problems over time, including:

  • Loss of appetite, leading to weight loss.
  • Lack of energy (fatigue).
  • Dehydration, loss of electrolytes.
  • Severe bleeding (hemorrhage).
  • Hole or tear (perforation) in the colon.
  • Colon infection.
  • Severe fluid loss (dehydration).
  • Joint pain.
  • Eye problems.
  • Kidney stones.
  • Weak, brittle bones (osteoporosis).
  • Infections at the site of the stoma.
  • Anemia.
  • Colon cancer, especially if ulcerative colitis affects most of the colon or the whole colon over a long time.

In rare cases, when severe problems occur, ulcerative colitis can lead to death.

What can you do to prevent ulcerative colitis?

Experts don’t know what causes ulcerative colitis. They also don’t know how to prevent the disease.

But good nutrition can play an important role in managing the disease. Changes in diet can help reduce symptoms. Some of the dietary changes that may be advised include:

  • Not drinking carbonated drinks.
  • Not eating high-fiber foods, such as popcorn, vegetable skins, and nuts while you have symptoms.
  • Drinking more liquids, especially water.
  • Eating more frequent, smaller meals.
  • Keeping a food diary that lists foods that cause symptoms.

Nutritional supplements and vitamins may be advised if nutrients aren't being absorbed. If you use complementary or alternative therapies, including dietary supplements and probiotics, tell your health care provider. This is important for making sure you have safe care.

Ulcerative colitis needs long-term management. It can cause great physical, financial, and emotional stress to both the person and their family. If you or your family members are having trouble coping with this disease, ask your provider for resources. These can include mental health counselors or local and online support groups.

In some cases, your provider may tell you not to take NSAIDs (nonsteroidal anti-inflammatory drugs), such as ibuprofen and naproxen. This is because these pain medicines can cause ulcerative colitis to flare in some people.

When to contact your doctor

Contact your health care provider right away if:

  • Your symptoms come back after they have gone away.
  • Your symptoms get worse.
  • You have new symptoms.
  • You are pregnant or plan to get pregnant.

Key points about ulcerative colitis

  • Ulcerative colitis is when the lining of your large intestine and your rectum become red and swollen (inflamed).
  • It's part of a group of diseases called inflammatory bowel disease (IBD).
  • It's a long-term disease.
  • Experts don’t know what causes it or how to prevent it.
  • While medicines can't cure it, they can control symptoms in most cases.
  • Lifestyle changes may help manage symptoms.

Next steps

Tips to help you get the most from a visit to your health care provider:

  • Know the reason for your visit and what you want to happen.
  • Before your visit, write down questions you want answered.
  • Bring someone with you to help you ask questions and remember what your provider tells you.
  • At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.
  • Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.
  • Ask if your condition can be treated in other ways.
  • Know why a test or procedure is recommended and what the results could mean.
  • Know what to expect if you do not take the medicine or have the test or procedure.
  • If you have a follow-up appointment, write down the date, time, and purpose for that visit.
  • Know how to contact your provider if you have questions, especially after office hours or on weekends.