Ulcerative colitis is a disease that causes inflammation and sores, called ulcers, in the lining of the rectum and colon. Ulcers form where inflammation has killed the cells that usually line the colon, then bleed and produce mucus. Inflammation in the colon also causes the colon to empty frequently, causing diarrhea.
When the inflammation occurs in the rectum and lowest 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 left-sided or distal colitis.
Ulcerative colitis is an inflammatory bowel disease (IBD), the umbrella term for diseases that cause inflammation in the small intestine and colon. It can be difficult to diagnose because its symptoms are similar to other intestinal disorders and to another type of IBD called Crohn’s disease. Crohn’s disease differs because it causes inflammation deeper within the intestinal wall (transmural) and can occur in other parts of the digestive system including the small intestine, mouth, esophagus, and stomach.
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 percent of people with ulcerative colitis having a family member or relative with ulcerative colitis or Crohn’s disease. A higher incidence of ulcerative colitis is seen in Caucasians and people of Jewish descent.
Many theories exist about what causes ulcerative colitis. People with ulcerative colitis have abnormalities of the immune system, but doctors do not know whether these abnormalities are a cause or a result of the disease. The body’s immune system is believed to react abnormally to the bacteria in the digestive tract.
Ulcerative colitis is not caused by emotional distress or sensitivity to certain foods or food products, but these factors may trigger symptoms in some people. The stress of living with ulcerative colitis may also contribute to a worsening of symptoms.
The most common symptoms of ulcerative colitis are abdominal pain and bloody diarrhea. Patients also may experience:
- Loss of body fluids (diarrhea) and nutrients (weight loss)
- Bleeding, leading to anemia (a low count of red blood cell causing fatigue)
- Redness and swelling of the eyes
- Joint pain (arthritis)
- Skin rash or sores
- Liver or lung disease
- Blood clots
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 or lung 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, others may occur independently.
How is ulcerative colitis diagnosed?
Many tests are used to diagnose ulcerative colitis. A physical exam and medical history are usually the first steps.
Blood tests may be done to check for anemia, which could indicate bleeding in the colon or rectum, or they may uncover a high white blood cell count, which is a sign of inflammation somewhere in the body.
A stool sample can also reveal white blood cells, whose presence indicates ulcerative colitis or inflammatory disease. In addition, a stool sample allows the doctor to detect bleeding or concomitant infection in the colon or rectum caused by bacteria, a virus, or parasites.
A colonoscopy is the most accurate method for making a diagnosis of ulcerative colitis and ruling out other possible conditions, such as Crohn’s disease, diverticular disease, or colorectal cancer. For this test, the doctor inserts an endoscope—a long, flexible, lighted tube connected to a computer and TV monitor—into the anus to see the inside of the colon and rectum. The doctor will be able to see any inflammation, bleeding, or ulcers on the colon wall. During the exam, the doctor may do a biopsy, which involves taking a sample of tissue from the lining of the colon to view with a microscope.
Sometimes CT scans are also used to diagnose ulcerative colitis or its complications. Blood tests or imaging cannot diagnose ulcerative colitis on their own.
Smoking and Ulcerative Colitis
Interestingly, people who smoke are less likely to have UC (Ulcerative Colitis), and it has been well established that individuals are prone to develop UC if they stop smoking. However, the multiple negative effects of smoking far outweigh any benefit in managing UC.
Medication Adherence Tips
Try to include one or a combination of the following tips to help keep you on track.
- Set an alarm on your watch or cell phone as a reminder to take your medications.
- Smartphone apps are available to help manage your medications.
- Leave yourself a note on the bathroom mirror or refrigerator, on a calendar or daily planner.
- Put medications where you can see them (examples: next to your toothbrush or on your nightstand)
- Keep a medication journal and check off when you take each dose.
- Stay organized – use weekly pill organizers.
- Plan ahead for refills – call your doctor for a new prescription when on refills is left or sign up for automatic refills through your pharmacy.
What Do I Do If…
Call your physician to discuss and/or make an appointment.
Call your physician to discuss and/or make an appointment within the next few days.
See or call your physician to discuss.
Call your physician immediately and if you cannot reach him/her or the nurse, go to the emergency room.
- Eat small amounts of food.
- Limit high-fiber foods in favor of cooked or steamed fruits or vegetables.
- Increase your water intake (at least 8 cups of water a day to avoid dehydration).
- Call or email the office.
- Begin a liquid-only diet.
- Call your physician.
- If physician approves, slowly begin a low-residue diet.
- New severe abdominal pain.
- New anal pain.
- Fever that doesn’t go away.
- Vomiting that doesn’t stop.
- Continuous rectal bleeding.
- Medication refills.
- Prior authorizations.
- Change in insurance.
- Routine appointments or scheduling.
- New, non-severe symptoms.
- Long-standing or occasional symptoms.
- General questions.
Keeping open the lines of communication will help your healthcare team work together.
And don’t forget yourself in this equation. YOU are the most important caregiver on your team. As the one person who is involved in every doctor-patient interaction, you act as the hub of your treatment process. It may be helpful to take notes at each appointment and keep them in one notebook or binder.
As part of your process, don’t forget to look at the details in your health insurance plan, such as which doctors are in or out of your network and how your choices will impact you financially.
Treatment for ulcerative colitis depends on the severity of the disease. Each person experiences ulcerative colitis differently, so treatment is adjusted for each individual.
There are many drugs that are effective for the treatment of ulcerative colitis. The goal of treatment is to induce and maintain remission and to improve the patient’s quality of life. Some drugs are effective at inducing remission and other drugs are effective at maintaining remission. Some drugs can do both. Most drugs need to be taken every day, others less frequently. Drug therapy can not cure ulcerative colitis. Several common drug types are listed below.
Aminosalicylates, drugs that contain 5-aminosalicylic acid (5-ASA), help control inflammation. These drugs are often taken several times a day. Sulfasalazine is a combination of sulfapyridine and 5-ASA. The sulfapyridine component carries the anti-inflammatory 5-ASA to the intestine. However, sulfapyridine may lead to side effects such as nausea, vomiting, heartburn, diarrhea, and headache. Other 5-ASA agents, such as olsalazine, mesalamine, and balsalazide, have a different carrier, fewer side effects, and may be used by people who cannot take sulfasalazine. 5-ASAs are given orally, through an enema, or in a suppository, depending on the location of the inflammation in the colon. Most people with mild or moderate ulcerative colitis are treated with this group of drugs first. This class of drugs is also used in cases of relapse.
Corticosteroids such as prednisone, methylprednisone, and hydrocortisone also reduce inflammation. They may be used by people who have moderate to severe ulcerative colitis or who do not respond to 5-ASA drugs. Corticosteroids, also known as steroids, can be given orally, intravenously, through an enema, or in a suppository, depending on the location of the inflammation. These drugs can cause side effects such as weight gain, acne, facial hair, hypertension, diabetes, mood swings, bone mass loss, cataracts, and an increased risk of infection. For this reason, they are not recommended for long-term use, although they are considered very effective when prescribed for short-term use.
Immunomodulators such as azathioprine and 6-mercaptopurine (6-MP) reduce inflammation by affecting the immune system. These drugs are used for patients who have not responded to 5-ASAs or corticosteroids or who are dependent on corticosteroids. Immunomodulators are administered orally, however, they are slow-acting and it may take up to 6 months before the full benefit.
Patients taking these drugs are monitored for complications including pancreatitis, hepatitis, a reduced white blood cell count, and an increased risk of infection. Cyclosporine A may be used with 6-MP or azathioprine to treat active, severe ulcerative colitis in hospitalized people who do not respond to intravenous corticosteroids.
Biologic and small molecule treatments: Some patients may require medications that target specific proteins in the body’s immune system to help control the cascade of inflammation. Tumor necrosis factor (TNF) can cause your immune system to attack healthy tissues in your body and cause inflammation and damage. Anti-TNF medications recognize, attach to and block the action of TNF. These agents are used for the treatment of moderate to severe ulcerative colitis that does not respond to standard therapies (aminosalicylates, corticosteroids or immunosuppressive agents). Infliximab is an Anti-TNF medication approved for ulcerative colitis and is given as an infusion regularly in your doctor’s office or hospital.
Other advanced medications include Vedolizumab, and infusion that prevents white blood cells from getting to the gut to cause the inflammation.
Ustekinumab blocks inflammatory proteins from causing the inflammatory cascade as does Rizankizumab. Both of these are shots, and not infusions.
Tofacitinib, Upadacitinib and Ozanemod are tablets that block these inflammatory molecules in a similar manner.
Narcotics, such as morphine derivatives, are usually discouraged during treatment for ulcerative colitis.
Some people have remissions—periods when the symptoms go away—that last for months or even years. However, most patients’ symptoms eventually return.
Occasionally, symptoms are severe enough that a person must be hospitalized. For example, a person may have severe bleeding or severe diarrhea that causes dehydration or have a superimposed infection of the colon. In such cases, the doctor will try to stop diarrhea and loss of blood, fluids, and electrolytes and diagnose and treat any infection. The patient may need a special diet, feeding through a vein, medications, or sometimes surgery.
About 20 percent of ulcerative colitis patients must eventually have their colons removed because of massive bleeding, severe illness, rupture of the colon, or risk of cancer. Sometimes the doctor will recommend removing the colon if medical treatment fails or if the side effects of corticosteroids or other drugs threaten the patient’s health.
Surgery to remove the colon and rectum, known as proctocolectomy, is usually performed by a two-step procedure, separated by 3-4 months, and can include:
Colectomy with Ileostomy, in which the surgeon removes the colon and creates a small opening in the abdomen, called a stoma, and attaches the end of the small intestine, called the ileum, to it. Waste will travel through the small intestine and exit the body through the stoma. The stoma is about the size of a quarter and is usually located in the lower right part of the abdomen near the beltline. A pouch (external bag) is worn over the opening to collect waste, and the patient empties the pouch as needed.
Ileoanal anastomosis, or pull-through operation, which allows the patient to have normal bowel movements (no pouch is worn) because it preserves part of the anus. In this operation, the surgeon removes the ileostomy and then attaches the ileum to the inside of the rectum and the anus, creating a pouch inside the body. Waste is stored in the pouch and passes through the anus in the usual manner. Bowel movements may be more frequent and watery than before the procedure. Inflammation of the pouch (pouchitis) is a possible complication. If a rectal cuff (a remnant of the very distal colon) is left in place, this will still require colon cancer screening.
Not every operation is appropriate for every person. Deciding on which surgery to have depends on the severity of the disease and the patient’s needs, expectations, and lifestyle. People faced with this decision should get as much information as possible by talking to their doctors, to nurses who work with colon surgery patients (enterostomal therapists), and to other colon surgery patients. Patient advocacy organizations can direct people to support groups and other information resources.
Frequently Asked Questions
Less than 5% of people with ulcerative colitis develop colon cancer. The risk of cancer increases with the duration of the disease and how much the colon has been damaged. For example, if only the rectum is involved, the risk of cancer is no higher than normal. However, if the entire colon is involved, the risk of cancer may be as much as 32 times the normal rate.
Sometimes precancerous changes occur in the cells lining the colon. These changes are called “dysplasia.” People who have dysplasia are much more likely to develop cancer than those who do not. Doctors look for signs of dysplasia when doing a colonoscopy or sigmoidoscopy and when examining tissue removed during these tests.
According to updated guidelines for colon cancer screening, people who have had IBD throughout their colon for at least 8 years and those who have had IBD in only the left colon for 12 to 15 years should have a colonoscopy with biopsies every 1 to 2 years to check for dysplasia. Such screening has not been proven to reduce the risk of colon cancer, but it may help identify cancer early. These guidelines were produced by an independent expert panel and endorsed by numerous organizations, including the American Cancer Society, the American College of Gastroenterology, the American Society of Colon and Rectal Surgeons, and the Crohn’s & Colitis Foundation of America.
Many young women with ulcerative colitis desire pregnancy. Women with this disease may get pregnant and have pregnancies and deliveries which are not different from women without ulcerative colitis, despite being on medications. However, the risks of having a flare of ulcerative colitis during the pregnancy are increased at the time of conception (when the sperm fertilizes the egg) if the woman is not in remission. Therefore, women with ulcerative colitis who would like to get pregnant should visit their gastroenterologist before pregnancy to help develop a treatment plan.