Ulcerative colitis, an inflammatory bowel disease (IBD) that causes chronic inflammation of the digestive tract, is characterized by abdominal pain and diarrhea. Like Crohn’s disease, another common IBD, ulcerative colitis can be debilitating and sometimes can lead to life-threatening complications.
Ulcerative colitis usually affects only the innermost lining of your large intestine (colon) and rectum. It occurs only through continuous stretches of your colon, unlike Crohn’s disease, which occurs in patches anywhere in the digestive tract and often spreads deep into the layers of affected tissues.
There’s no known cure for ulcerative colitis, but therapies are available that may dramatically reduce the signs and symptoms of ulcerative colitis and even bring about a long-term remission.
Ulcerative colitis symptoms can vary, depending on the severity of inflammation and where it occurs. For these reasons, doctors often classify ulcerative colitis according to its location.
Here are the signs and symptoms that may accompany ulcerative colitis, depending on its classification:
- Ulcerative proctitis. In this form of ulcerative colitis, inflammation is confined to the rectum and for some people, rectal bleeding may be the only sign of the disease. Others may have rectal pain, a feeling of urgency or an inability to move the bowels in spite of the urge to do so (tenesmus).
- Left-sided colitis. As the name suggests, inflammation extends from the rectum up the left side through the sigmoid and descending colon. Signs and symptoms include bloody diarrhea, abdominal cramping and pain, and weight loss.
- Pancolitis. Affecting the entire colon, pancolitis causes bouts of bloody diarrhea that may be severe, abdominal cramps and pain, fatigue, weight loss and night sweats.
- Fulminant colitis. This rare, life-threatening form of colitis affects the entire colon and causes severe pain, profuse diarrhea and, sometimes, dehydration and shock. People with fulminant colitis are at risk of serious complications including colon rupture and toxic megacolon, which occurs when the colon becomes severely distended.
The course of ulcerative colitis varies, with periods of acute illness often alternating with periods of remission. But over time, the severity of the disease usually remains the same. Only a small percentage of people with a milder condition, such as ulcerative proctitis, go on to develop more severe signs and symptoms.
Like Crohn’s disease, ulcerative colitis causes inflammation and ulcers in your intestine. But unlike Crohn’s, which can affect the colon in various sections, ulcerative colitis usually affects one continuous section of the inner lining of the colon beginning with the rectum.
No one is quite sure what triggers ulcerative colitis, but there’s a consensus as to what doesn’t. Researchers no longer believe that stress is the main culprit, although stress can often aggravate symptoms. Instead, current thinking focuses on the following possibilities:
- Immune system. Some scientists think a virus or bacterium may cause ulcerative colitis. The digestive tract becomes inflamed when your immune system tries to fight off the invading microorganism (pathogen). It’s also possible that inflammation may stem from an autoimmune reaction in which your body mounts an immune response even though no pathogen is present.
- Heredity. Because you’re more likely to develop ulcerative colitis if you have a parent or sibling with the disease, scientists suspect that genetic makeup may play a contributing role. Research into which genetic mutations might increase susceptibility to ulcerative colitis is ongoing.
Ulcerative colitis affects about the same number of women and men. Risk factors may include:
- Age. Ulcerative colitis can strike at any age, but you’re most likely to develop the condition when you’re young. Ulcerative colitis often strikes people in their 30s, although a small number of people may not develop the disease until their 50s or 60s.
- Ethnicity. Although whites have the highest risk of the disease, it can strike any ethnic group. If you’re Jewish and of European descent, you’re four to five times as likely to have ulcerative colitis.
- Family history. You’re at higher risk if you have a close relative, such as a parent, sibling or child, with the disease.
- Where you live. If you live in an urban area or in an industrialized country, you’re more likely to develop ulcerative colitis. People living in Northern climates also seem to have a greater risk of ulcerative colitis. Other environmental factors, such as a diet high in fat or refined foods, also may play a role.
- Inflamed bile ducts. This condition, called primary sclerosing cholangitis, causes inflammation of the bile ducts of the liver, and is associated with ulcerative colitis. If you have this condition, you doctor may look for ulcerative colitis even if you don’t have signs or symptoms.
- Isotretinoin (Accutane) use. Isotretinoin (Accutane) is a powerful medication sometimes used to treat scarring cystic acne or acne that doesn’t respond to other treatments. Although cause and effect hasn’t been proved, studies have reported the development of inflammatory bowel disease with isotretinoin use.
Your doctor will likely diagnose ulcerative colitis only after ruling out other possible causes for your signs and symptoms, including Crohn’s disease, ischemic colitis, infection, irritable bowel syndrome (IBS), diverticulitis and colorectal cancer. To help confirm a diagnosis of ulcerative colitis, you may have one or more of the following tests and procedures:
- Blood tests. Your doctor may suggest blood tests to check for anemia or signs of infection. Two tests that look for the presence of certain antibodies can sometimes help diagnose which type of inflammatory bowel disease you have, but not everyone with ulcerative colitis has these antibodies. These tests aren’t sensitive enough for routine use, but may be helpful in specific circumstances.
- Colonoscopy. This test allows your doctor to view your entire colon using a thin, flexible, lighted tube with an attached camera. During the procedure, your doctor can also take small samples of tissue (biopsy) for laboratory analysis.Sometimes a tissue sample can help confirm a diagnosis. If there are clusters of inflammatory cells called granulomas, for instance, it’s likely you have Crohn’s disease, because granulomas don’t occur with ulcerative colitis.
Risks of this procedure include perforation of the colon wall and bleeding, especially when a biopsy is taken.
- Flexible sigmoidoscopy. In this procedure, your doctor uses a slender, flexible, lighted tube to examine the sigmoid, the last 2 feet of your colon. The test usually takes just a few minutes. It’s somewhat uncomfortable, and there’s a slight risk of perforating the colon wall. It may also miss problems higher up in your colon.
- Barium enema. This diagnostic test allows your doctor to evaluate your entire large intestine with an X-ray. Barium, a contrast dye, is placed into your bowel in an enema form. Sometimes, air is added as well. The barium fills and coats the lining of the bowel, creating a silhouette of your rectum, colon and a portion of your small intestine.Barium enema isn’t as accurate as colonoscopy, it doesn’t allow your doctor to take tissue samples, and it’s not used in people with moderate to severe disease because of the risk of complications.
- Small bowel X-ray. This test looks at the part of the small bowel that can’t be seen by colonoscopy. You drink a barium “shake,” and then X-rays are taken of your small intestine. This test can help distinguish between ulcerative colitis and Crohn’s disease.
The most serious acute complication of ulcerative colitis is toxic megacolon. This occurs when your colon becomes paralyzed, preventing you from having a bowel movement or passing gas. Signs and symptoms include abdominal pain and swelling, fever and weakness. You might also become disoriented or groggy. If toxic megacolon isn’t treated, your colon may rupture, causing peritonitis, a life-threatening condition requiring emergency surgery.
Other possible complications of ulcerative colitis include:
- Perforated colon
- Severe dehydration
- Liver disease
- Inflammation of your skin, joints and eyes
IBD and colon cancer
Both ulcerative colitis and Crohn’s disease increase your risk of colon cancer. Despite this increased risk, however, more than 90 percent of people with inflammatory bowel disease never develop cancer. Your risk is greatest if you’ve had inflammatory bowel disease for at least eight to 10 years and if it’s spread through your entire colon. You’re less likely to develop cancer if only a small part of your colon is diseased.
Once you’ve had ulcerative colitis for eight to 10 years, be sure to have a colonoscopy every one or two years to look for early signs of colon cancer if your disease has spread farther than the rectum.
If you have ulcerative colitis, talk to your doctor before becoming pregnant or fathering a child. Some medications used to treat IBD have the potential to cause birth defects or can be passed to the baby through breast milk. Active ulcerative colitis increases the risk of fetal death or preterm labor. If you’re already pregnant, be sure you’re cared for by a doctor who has experience with IBD and pregnancy.
The goal of medical treatment is to reduce the inflammation that triggers your signs and symptoms. In the best cases, this may lead not only to symptom relief but also to long-term remission. Ulcerative colitis treatment usually involves either drug therapy or surgery.
Doctors use several categories of drugs that control inflammation in different ways. But drugs that work well for some people may not work for others, so it may take time to find a medication that helps you. In addition, because some drugs have serious side effects, you’ll need to weigh the benefits and risks of any treatment.
Anti-inflammatory drugs are often the first step in the treatment of inflammatory bowel disease. They include:
- Sulfasalazine (Azulfidine). Sulfasalazine can be effective in reducing symptoms of ulcerative colitis, but it has a number of side effects, including nausea, vomiting, heartburn and headache. Don’t take this medication if you’re allergic to sulfa medications.
- Mesalamine (Asacol, Rowasa) and olsalazine (Dipentum). These medications tend to have fewer side effects than sulfasalazine has. You take them in tablet form or use them rectally in the form of enemas or suppositories, depending on the area of your colon affected by ulcerative colitis. Mesalamine enemas can relieve signs and symptoms in more than 80 percent of people with ulcerative colitis in the lower left side of their colon and rectum. Olsalazine may cause or worsen existing diarrhea in some people.
- Balsalazide (Colazal). This is another formulation of mesalamine. Colazal delivers anti-inflammatory medication directly to the colon. The drug is similar to sulfasalazine, but uses a less toxic carrier and may produce fewer side effects.
- Corticosteroids. Corticosteroids can help reduce inflammation, but they have numerous side effects, including a puffy face, excessive facial hair, night sweats, insomnia and hyperactivity. More serious side effects include high blood pressure, type 2 diabetes, osteoporosis, bone fractures, cataracts and an increased susceptibility to infections. Long-term use of these drugs in children can lead to stunted growth.Also, corticosteroids don’t work for everyone who has ulcerative colitis. Doctors generally use corticosteroids only if you have moderate to severe inflammatory bowel disease that doesn’t respond to other treatments. Corticosteroids aren’t for long-term use and are generally prescribed for a period of three to four months.
They may also be used in conjunction with other medications as a means to induce remission. For example, corticosteroids may be used with an immune system suppressor — the corticosteroids can induce remission, while the immune system suppressors can help maintain remission. Occasionally, your doctor may also prescribe steroid enemas to treat disease in your lower colon or rectum. These, too, are only for short-term use.
Immune system suppressors
These drugs also reduce inflammation, but they target your immune system rather than treating inflammation itself. Because immune suppressors can be effective in treating ulcerative colitis, scientists theorize that damage to digestive tissues is caused by your body’s immune response to an invading virus or bacterium or even to your own tissue. By suppressing this response, inflammation is also reduced. Immunosuppressant drugs include:
- Azathioprine (Imuran) and mercaptopurine (Purinethol). These drugs have been used to treat Crohn’s disease for years, but their role in ulcerative colitis is only now being studied. Because azathioprine and mercaptopurine act slowly, they’re sometimes initially combined with a corticosteroid, but in time, they seem to produce benefits on their own, with less long-term toxicity.Side effects can include allergic reactions, bone marrow suppression, infections, and inflammation of the liver and pancreas. If you’re taking either of these medications, you’ll need to follow up closely with your doctor and have your blood checked regularly to look for side effects.
- Cyclosporine (Neoral, Sandimmune). This potent drug is normally reserved for people who don’t respond well to other medications or who face surgery because of severe ulcerative colitis. In some cases, cyclosporine may be used to delay surgery until you’re strong enough to undergo the procedure; in others, it’s used to control signs and symptoms until less toxic drugs start working. Cyclosporine begins working in one to two weeks, but because it has the potential for severe side effects, including kidney and liver damage, fatal infections and an increased risk of lymphoma, you and your doctor will want to talk about the risks and benefits of treatment.
- Infliximab (Remicade). This drug is specifically for adults and children with moderate to severe ulcerative colitis who don’t respond to or can’t tolerate other treatments. It works by neutralizing a protein produced by your immune system known as tumor necrosis factor (TNF). Infliximab finds TNF in your bloodstream and removes it before it causes inflammation in your intestinal tract and contributes to the formation of infected sores called fistulas.Some people with heart failure, people with multiple sclerosis, and people with cancer or a history of cancer can’t take Remicade. If you’re currently taking Remicade, talk to your doctor about the potential risks. The drug has been linked to an increased risk of infection, especially tuberculosis, and may increase your risk of blood problems and cancer. You’ll need to have a skin test for tuberculosis before taking infliximab and a chest X-ray if you lived or traveled extensively where tuberculosis has been found.
Also, because Remicade contains mouse protein, it can cause serious allergic reactions in some people — reactions that may be delayed for days to weeks after starting treatment. Once started, infliximab is often continued as long-term therapy, although its effectiveness may wear off over time.
These skin patches — the same kind smokers use — seem to provide short-term relief from flare-ups of ulcerative colitis for some people, especially people who formerly smoked. How nicotine patches work isn’t exactly clear, and the evidence that they provide relief is contested among researchers. Talk to your doctor before trying this treatment.
Don’t take up smoking as a treatment for ulcerative colitis. The risks from smoking far outweigh any potential benefit.
In addition to controlling inflammation, some medications may help relieve your signs and symptoms. Depending on the severity of your ulcerative colitis, your doctor may recommend one or more of the following:
- Anti-diarrheals. A fiber supplement such as psyllium powder (Metamucil) or methylcellulose (Citrucel) can help relieve signs and symptoms of mild to moderate diarrhea by adding bulk to your stool. For more severe diarrhea, loperamide (Imodium) may be effective. Use anti-diarrheal medications with great caution, however, because they increase the risk of toxic megacolon.
- Laxatives. In some cases, swelling may cause your intestines to narrow, leading to constipation. Talk to your doctor before taking any laxatives, because even those sold over-the-counter may be too harsh for your system.
- Pain relievers. For mild pain, your doctor may recommend acetaminophen (Tylenol, others). Don’t use nonsteroidal anti-inflammatory drugs (NSAIDs) such as aspirin, ibuprofen (Advil, Motrin, others) or naproxen (Aleve). These are likely to make your symptoms worse.
- Iron supplements. If you have chronic intestinal bleeding, you may develop iron deficiency anemia. Taking iron supplements may help restore your iron levels to normal and reduce this type of anemia once your bleeding has stopped or diminished.
If diet and lifestyle changes, drug therapy or other treatments don’t relieve your signs and symptoms, your doctor may recommend surgery.
Surgery can often eliminate ulcerative colitis. But that usually means removing your entire colon and rectum (proctocolectomy). In the past, after this surgery you would wear a small bag over an opening in your abdomen (ileostomy) to collect stool. But a procedure called ileoanal anastomosis eliminates the need to wear a bag. Instead, your surgeon constructs a pouch from the end of your small intestine. The pouch is then attached directly to your anus. This allows you to expel waste more normally, although you may have as many as five to seven soft or watery bowel movements a day because you no longer have your colon to absorb water.
If you have surgery, your doctor may discuss whether an ileostomy or an ileoanal pouch is right for you. Between 25 percent and 40 percent of people with ulcerative colitis eventually need surgery.
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.
- Limit dairy products. Like many people with inflammatory bowel disease, you may find that problems, such as diarrhea, abdominal pain and gas, improve when you limit or eliminate dairy products. You may be lactose intolerant — that is, your body can’t digest the milk sugar (lactose) in dairy foods. If so, try substituting yogurt or low-lactose cheeses, such as Swiss and cheddar, for milk. Or use an enzyme product, such as Lactaid, to help break down lactose.In some cases, you may need to eliminate dairy foods completely. If you need help, a registered dietitian can help you design a healthy diet that’s low in lactose. Keep in mind that with limiting your dairy intake, you’ll need to find other sources of calcium, such as supplements.
- Experiment with fiber. For most people, high-fiber foods, such as fresh fruits and vegetables and whole grains, are the foundation of a healthy diet. But if you have inflammatory bowel disease, fiber may make diarrhea, pain and gas worse. If raw fruits and vegetables bother you, try steaming, baking or stewing them.You may also find that you can tolerate some fruits and vegetables, but not others. In general, you may have more problems with foods in the cabbage family, such as broccoli and cauliflower, and with very crunchy foods such as raw apples and carrots.
- Avoid problem foods. Eliminate any other foods that seem to make your symptoms worse. These may include “gassy” foods such as beans, cabbage and broccoli, raw fruit juices and fruits — especially citrus fruits — spicy food, popcorn, alcohol, caffeine, and foods and drinks that contain caffeine, such as chocolate and soda.
- Eat small meals. You may find you feel better eating five or six small meals rather than two or three larger ones.
- Drink plenty of liquids. Try to drink plenty of fluids daily. Water is best. Alcohol and beverages that contain caffeine stimulate your intestines and can make diarrhea worse, while carbonated drinks frequently produce gas.
- Ask about multivitamins. Because ulcerative colitis can interfere with your ability to absorb nutrients and because your diet may be limited, vitamin and mineral supplements can play a key role in supplying missing nutrients. They don’t provide essential protein and calories, however, and shouldn’t be a substitute for meals.
- Talk to a dietitian. If you begin to lose weight or your diet has become very limited, talk to a registered dietitian.
Although stress doesn’t cause inflammatory bowel disease, it can make your signs and symptoms much worse and may trigger flare-ups. Stressful events can range from minor annoyances to a move, job loss or the death of a loved one.
When you’re stressed, your normal digestive process changes. Your stomach empties more slowly and secretes more acids. Stress can also speed or slow the passage of intestinal contents. It may also cause changes in intestinal tissue itself.
Although it’s not always possible to avoid stress, you can learn ways to help manage it. Some of these include:
- Exercise. Even mild exercise can help reduce stress, relieve depression and normalize bowel function. Talk to your doctor 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. You’re then taught how to produce these changes yourself. The goal is to help you enter a relaxed state so that you can cope more easily with stress. Biofeedback is usually taught in hospitals and medical centers.
- Regular relaxation and breathing exercises. An effective way to cope with stress from ulcerative colitis is to regularly relax and exercise. You can take classes in yoga and meditation or practice at home using books or tapes.You can also practice progressive relaxation exercises. These help relax the muscles in your body, one by one. Start by tightening the muscles in your feet, then concentrate on slowly letting all the tension go. Next, tighten and relax your calves. Continue until the muscles in your body, including those in your eyes and scalp, are completely relaxed.
Deep breathing also can help you relax. Most adults breathe from their chests. But you become calmer when you breathe from your diaphragm — the muscle that separates your chest from your abdomen. When you inhale, allow your belly to expand with air; when you exhale, your abdomen naturally contracts. Deep breathing can also help relax your abdominal muscles, which may lead to more normal bowel activity.
- Hypnosis. Hypnosis may reduce abdominal pain and bloating. A trained professional can teach you how to enter a relaxed state and then guide you as you imagine your intestinal muscles becoming smooth and calm.
- Other techniques. Set aside at least 20 minutes a day for any activity you find relaxing — listening to music, reading, playing computer games or just soaking in a warm bath.
Ulcerative colitis doesn’t just affect you physically — it takes an emotional toll as well. If signs and symptoms are severe, your life may revolve around a constant need to run to the toilet. In some cases, you may barely be able to leave the house. When you do, you might worry about an accident, and this anxiety only makes your symptoms worse.
Even if your symptoms are mild, gas and abdominal pain can make it difficult to be out in public. You may also feel hampered by dietary restrictions or embarrassed by the nature of your disease. All of these factors — isolation, embarrassment and anxiety — can severely alter your life. Sometimes they may lead to depression.
One of the best ways to feel more in control is to find out as much as possible about ulcerative colitis. Organizations such as the Crohn’s and Colitis Foundation of America (CCFA) have chapters set up across the country to provide information and access to support groups. Your doctor, nurse or dietitian can locate the chapter nearest you, or you can contact the organization directly.
Although support groups aren’t for everyone, they can provide valuable information about your condition as well as emotional support. Group members frequently know about the latest medical treatments or integrative therapies. You may also find it reassuring to be among people who understand what you’re going through.
Some people find it helpful to consult a psychologist or psychiatrist who’s familiar with inflammatory bowel disease and the emotional difficulties it can cause. Although living with ulcerative colitis can be discouraging, the outlook is brighter than it was even just a few years ago.