Consumer Information

Ulcerative Colitis

WHAT YOU SHOULD KNOW:

Ulcerative colitis (koh-LEYE-tis) is a long-term disease of the colon (large intestine). The colon is a 5 to 6 feet long tube inside your abdomen (belly) where stool is formed. The colon connects your small intestine to your anus (opening through which stool passes). Ulcerative colitis usually involves the rectum and the lower part of the colon, but may also involve the whole colon.
It is not exactly known what causes ulcerative colitis. Problems with the immune system and the way the colon handles infection are thought to cause this disease. With ulcerative colitis, there is inflammation of the inner lining of the colon. Tiny open sores or ulcers form on the lining, where they bleed and make pus and mucus. This causes a crampy abdominal (stomach) pain and bloody diarrhea (loose bowel movements with blood in them). You may have times with few or no symptoms which is called a remission (quiet). At other times, you may have more signs or symptoms which is called a relapse (active). Ulcerative colitis is treated with medicines and surgery.

CARE AGREEMENT:

You have the right to help plan your care. To help with this plan, you must learn about your health condition and how it may be treated. You can then discuss treatment options with your caregivers. Work with them to decide what care may be used to treat you. You always have the right to refuse treatment.

RISKS:

Ulcerative colitis if not treated may lead to dehydration (not enough water in your body), malnutrition (not enough calories and nutrients to keep you healthy) and severe anemia (low blood iron). Long-standing ulcerative colitis may lead to cancer of the colon, and may also affect other parts of the body. There may be swelling of your joints, eyes, or mouth. You may also have skin problems, kidney stones, gallstones, spine problems, and diseases of your liver. Talk to your caregiver if you have questions about ulcerative colitis, and its treatment.

WHILE YOU ARE HERE:

Informed consent: You have the right to understand your health condition in words that you know. You should be told what tests, treatments, or procedures may be done to treat your condition. Your doctor should also tell you about the risks and benefits of each treatment. You may be asked to sign a consent form that gives caregivers permission to do certain tests, treatments, or procedures. If you are unable to give your consent, someone who has permission can sign this form for you. A consent form is a legal piece of paper that tells exactly what will be done to you. Before giving your consent, make sure all your questions have been answered so that you understand what may happen.

Activity: You may need to rest in bed. You may be allowed out of bed once you are feeling better. Your caregiver will tell you when it is OK to get out of bed. If you are not allowed out of bed, you can still exercise your legs in bed. Do this by lifting one leg off the bed and drawing big circles with your toes. Then do it with the other leg. Call your caregiver before getting up for the first time. If you ever feel weak or dizzy, sit or lie down right away.

Bowel movements: Bowel movements are also called BMs or having a stool. You may often diarrhea (watery BMs) and they may have blood in them. Severe diarrhea may cause you to be dehydrated (not enough water in your body) and anemic (low blood iron). Caregivers will treat the diarrhea, dehydration, and anemia while you are in the hospital.

Intake and output: Your caregivers may need to know the amount of liquid you are getting. They may also need to know how much you are urinating. Men 19 years old and older should drink about 3.0 Liters of liquid each day (close to 13 eight-ounce cups). Women 19 years old and older should drink about 2.2 Liters of liquid each day (close to 9 eight-ounce cups). Certain foods also contain liquid. You may need more or less liquid each day. Ask your caregiver how much liquid you should have each day. Ask caregivers if they need to measure or collect your urine before you dispose of it.

Medicines: You may be given any of the following:

Aminosalicylates: These are also known as 5-ASA. These medicines work by preventing your immune system from releasing substances that can cause swelling.
Anti-tumor necrosis factor (anti-TNF) medicine: This medicine blocks inflammation.
Immunosuppressants: These medicines may be given to slow down the immune system.
Nutritional supplements: Caregivers may give you vitamins or minerals to improve your nutrition if you have severe ulcerative colitis.
Steroids: Steroid medicine may be given to decrease inflammation, which is redness, pain, and swelling.

Tests: You may have one or more of the following tests:

Blood tests: You may need blood taken for tests. The blood can be taken from a blood vessel in your hand, arm, or the bend in your elbow. It is tested to see how your body is doing. It can give your caregivers more information about your health condition. You may need to have blood drawn more than once.
Colonoscopy: A colonoscopy is a test that is done to look at your colon. A tube with a light on the end will be put into your anus, and then moved forward into your colon.
Sigmoidoscopy: A sigmoidoscopy test looks for changes in your intestinal (bowel) wall that may be caused by a disease or condition. This test may also help find the cause of bleeding or pain. A long, thin tube with a tiny camera on the end is put through your anus into your rectum (rear-end). It also goes to the part of your intestine called the sigmoid. Caregivers will look for problems in your rectum and lower colon. A small amount of tissue may be taken from the intestine wall and sent for tests. Follow your caregiver's instructions for what to do before, during and after the test.
Stool sample: A sample of your stool or bowel movement (BM) is sent to a lab for tests. The stool may show what germ is causing your illness. This helps caregivers learn what medicine is best to treat you.

Treatment options: Your treatment may change depending on your response to medicines and after you have follow-up tests. You may have any of the following:

Blood transfusion: During a blood transfusion, you will get whole blood, or parts of blood through an IV. Many people are worried about getting AIDS, hepatitis, or West Nile Virus from a blood transfusion. The risk of this happening is rare. Blood banks test all donated blood for AIDS, hepatitis, and West Nile Virus. If you refuse a blood transfusion, your condition may get worse, and you may die.
Surgery: You may need surgery to remove all or part of your colon. Surgery is the only cure for ulcerative colitis. There are different types of surgery that can be done depending on how bad your ulcerative colitis is and the kind of life-style you live. Talk with caregivers to find out what surgery might be best for you.

The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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