Ulcerative colitis

Overview

Ulcerative colitis (UL-sur-uh-tiv koe-LIE-tis) is an inflammatory bowel disease (IBD) that causes inflammation and ulcers (sores) in your digestive tract. Ulcerative colitis affects the innermost lining of your large intestine, also called the colon, and rectum. In most people, symptoms usually develop over time, rather than suddenly.

Ulcerative colitis can be draining and can sometimes lead to life-threatening complications. While it has no known cure, there are several new treatments that can greatly reduce signs and symptoms of the disease and bring about long-term remission.

Symptoms

Ulcerative colitis symptoms can vary, depending on the severity of inflammation and where it occurs. Signs and symptoms may include:

• Diarrhea, often with blood or pus
• Rectal bleeding — passing small amount of blood with stool
• Abdominal pain and cramping
• Rectal pain
• Urgency to defecate
• Inability to defecate despite urgency
• Weight loss
• Fatigue
• Fever
• In children, failure to grow

Most people with ulcerative colitis have mild to moderate symptoms. The course of ulcerative colitis may vary, with some people having long periods when it goes away. This is called remission.

Types

Health care providers often classify ulcerative colitis according to its location. Symptoms of each type often overlap. Types of ulcerative colitis include:

• Ulcerative proctitis. Inflammation is confined to the area closest to the anus, also called the rectum. Rectal bleeding may be the only sign of the disease.
• Proctosigmoiditis. Inflammation involves the rectum and sigmoid colon — the lower end of the colon. Symptoms include bloody diarrhea, abdominal cramps and pain, and an inability to move the bowels despite the urge to do so. This is called tenesmus.
• Left-sided colitis. Inflammation extends from the rectum up through the sigmoid and descending portions of the colon. Symptoms include bloody diarrhea, abdominal cramping and pain on the left side, and urgency to defecate.
• Pancolitis. This type often affects the entire colon and causes bouts of bloody diarrhea that may be severe, abdominal cramps and pain, fatigue, and significant weight loss.

When to see a doctor

See your health care provider if you experience a persistent change in your bowel habits or if you have signs and symptoms such as:

• Abdominal pain
• Blood in your stool
• Ongoing diarrhea that doesn't respond to nonprescription medications
• Diarrhea that awakens you from sleep
• An unexplained fever lasting more than a day or two

Although ulcerative colitis usually isn't fatal, it's a serious disease. In some cases, ulcerative colitis may cause life-threatening complications.

Causes

The exact cause of ulcerative colitis remains unknown. Previously, diet and stress were suspected. However, researchers now know that these factors may aggravate but don't cause ulcerative colitis.

One possible cause is an immune system malfunction. When your immune system tries to fight off an invading virus or bacterium, an irregular immune response causes the immune system to attack the cells in the digestive tract, too.

Heredity also seems to play a role in that ulcerative colitis is more common in people who have family members with the disease. However, most people with ulcerative colitis don't have this family history.

Risk factors

Ulcerative colitis affects about the same number of women and men. Risk factors may include:

• Age. Ulcerative colitis usually begins before the age of 30, but it can occur at any age. Some people may not develop the disease until after age 60.
• Race or ethnicity. Although white people have the highest risk of the disease, it can occur in any race. If you're of Ashkenazi Jewish descent, your risk is even higher.
• Family history. You're at higher risk if you have a close relative, such as a parent, sibling or child, with the disease.

Complications

Possible complications of ulcerative colitis include:

• Severe bleeding
• Severe dehydration
• A rapidly swelling colon, also called a toxic megacolon
• A hole in the colon, also called a perforated colon
• Increased risk of blood clots in veins and arteries
• Inflammation of the skin, joints and eyes
• An increased risk of colon cancer
• Bone loss, also called osteoporosis

Diagnosis

Endoscopic procedures with tissue biopsy are the only way to definitively diagnose ulcerative colitis. Other types of tests can help rule out complications or other forms of inflammatory bowel disease, such as Crohn's disease.

To help confirm a diagnosis of ulcerative colitis, you may have one or more of the following tests and procedures:

Lab tests

• Blood tests. Your provider may suggest blood tests to check for anemia — a condition in which there aren't enough red blood cells to carry adequate oxygen to your tissues — or to check for signs of infection or inflammation.
• Stool studies. White blood cells or certain proteins in your stool can indicate ulcerative colitis. A stool sample also can help rule out other disorders, such as infections caused by bacteria, viruses and parasites.

Endoscopic procedures

• Colonoscopy. This exam allows your provider to view your entire colon using a thin, flexible, lighted tube with a camera on the end. During the procedure, tissue samples are taken for laboratory analysis. This is known as a tissue biopsy. A tissue sample is necessary to make the diagnosis.
• Flexible sigmoidoscopy. Your provider uses a slender, flexible, lighted tube to examine the rectum and sigmoid colon — the lower end of your colon. If your colon is severely inflamed, this test may be preferred instead of a full colonoscopy.

Imaging procedures

• X-ray. If you have severe symptoms, your provider may use a standard X-ray of your abdominal area to rule out serious complications, such as a megacolon or a perforated colon.
• CT scan. A CT scan of your abdomen or pelvis may be performed if a complication from ulcerative colitis is suspected. A CT scan may also reveal how much of the colon is inflamed.
• Computerized tomography (CT) enterography and magnetic resonance (MR) enterography. These types of noninvasive tests may be recommended to exclude any inflammation in the small intestine. These tests are more sensitive for finding inflammation in the bowel than are conventional imaging tests. MR enterography is a radiation-free alternative.

Treatment

Ulcerative colitis treatment usually involves either medication therapy or surgery.

Several categories of medications may be effective in treating ulcerative colitis. The type you take will depend on the severity of your condition. The medications that work well for some people may not work for others. It may take time to find a medication that helps you.

In addition, because some medications have serious side effects, you'll need to weigh the benefits and risks of any treatment.

Anti-inflammatory medications

Anti-inflammatory medications are often the first step in the treatment of ulcerative colitis and are appropriate for most people with this condition. These include:

• 5-aminosalicylates. Examples of this type of medication include sulfasalazine (Azulfidine), mesalamine (Delzicol, Rowasa, others), balsalazide (Colazal) and olsalazine (Dipentum). Which medication you take and how you take it — by mouth or as an enema or suppository — depends on the area of your colon that's affected.
• Corticosteroids. These medications, which include prednisone and budesonide, are generally reserved for moderate to severe ulcerative colitis that doesn't respond to other treatments. Corticosteroids suppress the immune system. Due to the side effects, they are not usually given long term.

Immune system suppressors

These medications also reduce inflammation, but they do so by suppressing the immune system response that starts the process of inflammation. For some people, a combination of these medications works better than one medication alone.

Immunosuppressant medications include:

• Azathioprine (Azasan, Imuran) and mercaptopurine (Purinethol, Purixan). These are commonly used immunosuppressants for the treatment of inflammatory bowel disease. They are often used in combination with medications known as biologics. Taking them requires that you follow up closely with your provider and have your blood checked regularly to look for side effects, including effects on the liver and pancreas.
• Cyclosporine (Gengraf, Neoral, Sandimmune). This medication is typically reserved for people who haven't responded well to other medications. Cyclosporine has the potential for serious side effects and is not for long-term use.

• "Small molecule" medications. More recently, orally delivered agents, also known as "small molecules," have become available for IBD treatment. These include tofacitinib (Xeljanz), upadacitinib (Rinvoq) and ozanimod (Zeposia). These medications may be effective when other therapies don't work. Main side effects include the increased risk of shingles infection and blood clots.

  The U.S. Food and Drug Administration (FDA) recently issued a warning about tofacitinib, stating that preliminary studies show an increased risk of serious heart-related problems and cancer from taking this medication. If you're taking tofacitinib for ulcerative colitis, don't stop taking it without first talking with your health care provider.

Biologics

This class of therapies targets proteins made by the immune system. Types of biologics used to treat ulcerative colitis include:

• Infliximab (Remicade), adalimumab (Humira) and golimumab (Simponi). These medications, called tumor necrosis factor (TNF) inhibitors, work by neutralizing a protein produced by your immune system. They are for people with severe ulcerative colitis who don't respond to or can't tolerate other treatments. TNF inhibitors are also called biologics.
• Vedolizumab (Entyvio). This medication is approved for treatment of ulcerative colitis for people who don't respond to or can't tolerate other treatments. It works by blocking inflammatory cells from getting to the site of inflammation.
• Ustekinumab (Stelara). This medication is approved for treatment of ulcerative colitis for people who don't respond to or can't tolerate other treatments. It works by blocking a different protein that causes inflammation.

Other medications

You may need additional medications to manage specific symptoms of ulcerative colitis. Always talk with your health care provider before using over-the-counter medications. Your provider may recommend one or more of the following.

• Anti-diarrheal medications. For severe diarrhea, loperamide (Imodium A-D) may be effective. If you have ulcerative colitis, do not take anti-diarrheal medications without first talking with your health care provider. These medications may increase the risk of an enlarged colon (toxic megacolon).
• Pain relievers. For mild pain, your provider may recommend acetaminophen (Tylenol, others) — but not ibuprofen (Advil, Motrin IB, others), naproxen sodium (Aleve) and diclofenac sodium, which can worsen symptoms and increase the severity of disease.
• Antispasmodics. Sometimes health care providers will prescribe antispasmodic therapies to help with cramps.
• Iron supplements. If you have chronic intestinal bleeding, you may develop iron deficiency anemia and be given iron supplements.

Surgery

Surgery can eliminate ulcerative colitis and involves removing your entire colon and rectum (proctocolectomy).

In most cases, this involves a procedure called ileoanal anastomosis (J-pouch) surgery. This procedure eliminates the need to wear a bag to collect stool. Your surgeon constructs a pouch from the end of your small intestine. The pouch is then attached directly to your anus, allowing you to expel waste in the usual way. This surgery may require 2 to 3 steps to complete.

In some cases a pouch is not possible. Instead, surgeons create a permanent opening in your abdomen (ileal stoma) through which stool is passed for collection in an attached bag.

Cancer surveillance

You will need more-frequent screening for colon cancer because of your increased risk. The recommended schedule will depend on the location of your disease and how long you have had it. People with inflammation of the rectum, also known as proctitis, are not at increased risk of colon cancer.

If your disease involves more than your rectum, you will require a surveillance colonoscopy every 1 to 2 years. This begins as soon as eight years after diagnosis if the majority of colon is involved. Or 15 years after diagnosis if only the left side of your colon is involved.

Lifestyle and home remedies

Sometimes you may feel helpless when facing ulcerative colitis. But changes in your diet and lifestyle may help control your symptoms and lengthen the time between flare-ups.

There's no firm evidence that what you eat actually causes inflammatory bowel disease. But certain foods and beverages can aggravate your signs and symptoms, especially during a flare-up.

It can be helpful to keep a food diary to keep track of what you're eating, as well as how you feel. If you discover that some foods are causing your symptoms to flare, you can try eliminating them.

Here are some general dietary suggestions that may help you manage your condition:

• Limit dairy products. Many people with inflammatory bowel disease find that problems such as diarrhea, abdominal pain and gas improve by limiting or eliminating dairy products. You may be lactose intolerant — that is, your body can't digest the milk sugar (lactose) in dairy foods. Using an enzyme product such as Lactaid may help as well.
• Eat small meals. You may find that you feel better eating five or six small meals a day rather than two or three larger ones.
• Drink plenty of liquids. Try to drink plenty of liquids daily. Water is best. Alcohol and beverages that contain caffeine stimulate your intestines and can make diarrhea worse, while carbonated drinks frequently produce gas.
• Talk to a dietitian. If you begin to lose weight or your diet has become very limited, talk to a registered dietitian.

Stress

Although stress doesn't cause inflammatory bowel disease, it can make your signs and symptoms worse and may trigger flare-ups.

To help control stress, try:

• Exercise. Even mild exercise can help reduce stress, relieve depression and correct bowel function. Talk to your health care provider about an exercise plan that's right for you.
• Biofeedback. This stress-reduction technique helps you reduce muscle tension and slow your heart rate with the help of a feedback machine. The goal is to help you enter a relaxed state so that you can cope more easily with stress.
• Regular relaxation and breathing exercises. An effective way to cope with stress is to perform relaxation and breathing exercises. You can take classes in yoga and meditation or practice at home using books, CDs or DVDs.

Alternative medicine

Many people with digestive disorders have used some form of complementary and alternative medicine. However, there are few well-designed studies showing the safety and effectiveness of complementary and alternative medicine.

Although research is limited, there is some evidence that adding probiotics along with other medications may be helpful, but this has not been proved.

Preparing for an appointment

Symptoms of ulcerative colitis may first prompt you to visit your primary health care provider. Your provider may recommend you see a specialist who treats digestive diseases (gastroenterologist).

Because appointments can be brief, and there's often a lot of information to discuss, it's a good idea to be well prepared. Here's some information to help you get ready, and what to expect.

What you can do

• Be aware of any pre-appointment restrictions. At the time you make the appointment, be sure to ask if there's anything you need to do in advance, such as restrict your diet.
• Write down any symptoms you're experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
• Write down key personal information, including any major stresses or recent life changes.
• Make a list of all medications, vitamins or supplements that you're taking. Be sure to let your health care provider know if you're taking any herbal preparations, as well.
• Ask a family member or friend to come with you. Sometimes it can be difficult to remember all the information provided to you during an appointment. Someone who accompanies you may remember something that you missed or forgot.

Your time is limited, so preparing a list of questions ahead of time can help you make the most of your time. List your questions from most important to least important in case time runs out. For ulcerative colitis, some basic questions to ask include:

• What's the most likely cause of my symptoms?
• Are there other possible causes for my symptoms?
• What kinds of tests do I need? Do these tests require any special preparation?
• Is this condition temporary or long lasting?
• What treatments are available, and which do you recommend?
• What types of side effects can I expect from treatment?
• Are there any prescription or over-the-counter medications I need to avoid?
• What sort of follow-up care do I need? How often do I need a colonoscopy?
• Are there any alternatives to the primary approach that you're suggesting?
• I have other health conditions. How can I best manage them together?
• Are there certain foods I can't eat anymore?
• Will I be able to keep working?
• Can I have children?
• Is there a generic alternative to the medicine you're prescribing?
• Are there any brochures or other printed material that I can take with me? What websites do you recommend?

What to expect from your doctor

Your provider is likely to ask you a number of questions. Being ready to answer them may reserve time to go over points you want to spend more time on. Your provider may ask:

• When did you first begin experiencing symptoms?
• Have your symptoms been continuous or occasional?
• How severe are your symptoms?
• Do you have abdominal pain?
• Have you had diarrhea? How often?
• Have you recently lost any weight unintentionally?
• Does anything seem to improve your symptoms?
• What, if anything, appears to worsen your symptoms?
• Have you ever experienced liver problems, hepatitis or jaundice?
• Have you had any problems with your joints, eyes, skin rashes or sores, or had sores in your mouth?
• Do you awaken from sleep during the night because of diarrhea?
• Have you recently traveled? If so, where?
• Is anyone else in your home sick with diarrhea?
• Have you taken antibiotics recently?
• Do you regularly take nonsteroidal anti-inflammatory medications, such as ibuprofen (Advil, Motrin IB, others) or naproxen sodium (Aleve)?