Ulcerative Colitis: Frequently Asked Questions

Ulcerative colitis causes chronic inflammation of the colon (large intestine). In severe cases, the disease also causes ulcers in the lining of the colon. Ulcerative colitis is most often diagnosed in people between the ages of 15 and 30, although it can develop at any age.

Ulcerative colitis is a chronic autoimmune condition in which you may experience periods of active disease (flares/relapses) and periods of mild or inactive disease (remission).

Currently, there is no cure for ulcerative colitis. The goals of therapy are to get you feeling back to normal, keep you feeling normal, and reduce the number of flare-ups so you can live without limitations related to the disease.

Ulcerative colitis affects an estimated 600,000 - 1.5 million people in the United States. Males and females are evenly affected. Ulcerative colitis is more common in more developed countries but is becoming increasingly common in developing countries as well. Ulcerative colitis also appears to be more common in urban rather than rural areas and in areas farther from the equator.

Although ulcerative colitis can develop at any age, it most commonly develops between ages 20 to 30. About 25 percent of patients are diagnosed before the age of 20. Although less common, elderly patients can still develop ulcerative colitis.

Ulcerative colitis can run in families.

Ulcerative colitis is more common among Caucasians, particularly Ashkenazi Jews, but is being identified more among Hispanics, Asians, and African Americans.

The cause of ulcerative colitis is unclear and is an area of ongoing research. Factors like a person's genetic makeup, environment and immune system are all thought to play a role in the development of the disease. nm Current theories suggest ulcerative colitis is caused by an inappropriate response by the immune system to normal bacteria in the colon. As the precise triggers for the disease are unclear, current treatment focuses on suppressing the immune response that has been activated. 

The most widely accepted theory is that a person's immune system abnormally overreacts to something in the gastrointestinal tract, increasing the inflammatory cells in the intestines. The immune system then does not properly shut itself off, resulting in the chronic inflammation that is characteristic of ulcerative colitis. This is why many of the current treatments for ulcerative colitis focus on suppressing the body's overactive immune response.

Most patients present with bloody stools and diarrhea.

• Diarrhea
• Crampy abdominal pain
• Bloody stool
• Urgency
• Incontinence of stool
• Weight loss
• Fevers
• Joint pain

These symptoms are not exclusive to ulcerative colitis. In young adults with ongoing diarrhea, infections of the colon are still the most common cause. After infections have been ruled out by a doctor, ulcerative colitis may be diagnosed.

Ulcerative colitis can be classified both by location and severity. The best way to assess the location and severity of ulcerative colitis is by performing a colonoscopy. Over time, the parts of the colon affected by UC and the severity of the inflammation can change.

Extent of ulcerative colitis:

• Proctitis: inflammation only in the rectum. Proctitis is often the most mild form of UC and is often treated with rectal therapy alone. Some patients might start off with only proctitis but later develop more extensive inflammation.
• Proctosigmoiditis: inflammation in the rectum and sigmoid colon. The sigmoid colon is the last part of the colon before the rectum and is located in the lower left part of the abdomen.
• Left-sided colitis: inflammation extends from the rectum to the descending (left) colon near the spleen.
• Pan-ulcerative colitis: inflammation involves the entire colon. This form of colitis tends to be the most severe and is most likely to require surgery.

Severity of ulcerative colitis:

• Mild: No more than four bowel movements per day and either no blood or a small amount of rectal bleeding
• Moderate: More than four bowel movements per day and a moderate amount of blood
• Severe: More than six bowel movements per day and a severe amount of blood. Patients may also have fever, fast heart rate (tachycardia) and anemia.
• Acute severe: more than ten bowel movements per day and constant rectal bleeding. May also include fever, pain, and inability to eat. Patients will typically require hospitalization and may need surgery. Left untreated, very severe ulcerative colitis can be life threatening.

Ulcerative colitis can affect organs outside the GI tract in up to 25% of people and cause symptoms outside the bowel known as extraintestinal manifestations (EIM).

Sites that can be affected include:

• Joints: typically the lower part of the spine or the peripheral joints (hips, knees, ankles, etc.)
• Skin: Two of the most common rashes associated with Crohn's disease are:
  • Erythema nodosum: painful, raised red bumps
  • Pyoderma gangrenosum: ulcerations in the skin
• Eyes
  • Uveitis causes eye pain and/or changes in vision and requires evaluation by an ophthalmologist
  • Episcleritis is painless redness in the whites of your eyes (conjunctiva and sclera)
• Liver:
  • Fatty liver is the most common liver disease if you have Crohn's disease
  • Primary sclerosing cholangitis (PSC) is an inflammation of ducts in the liver that can eventually cause the liver to fail (cirrhosis). If you have been diagnosed with PSC, you also have an increased risk for cancer of the ducts of the liver (cholangiocarcinoma) and an increased risk for colon cancer
• Oral ulcers

Other conditions that produce similar symptoms to ulcerative colitis include:

• Irritable bowel syndrome can cause diarrhea and crampy abdominal pain, but bleeding and night-time diarrhea are unusual
• Intestinal infections (Clostridium difficile, salmonella, shigella and campylobacter) can cause profuse diarrhea, rectal bleeding, fevers and abdominal pain (infectious colitis)
• Crohn's disease of the colon may cause similar symptoms to ulcerative colitis, but usually the colon is inflamed only in a patchy manner in Crohn’s colitis
• Ischemic colitis is insufficient blood supply to the colon. This typically occurs in older patients and can cause bloody diarrhea and severe abdominal pain
• Celiac disease, microscopic colitis, bacterial overgrowth and lactose intolerance are among the other conditions that can cause diarrhea and crampy abdominal pain without bleeding

All of these symptoms require medical attention, but symptoms alone are insufficient to diagnose ulcerative colitis.

There is no single test to diagnose ulcerative colitis. The diagnosis is made using a combination of:

• Clinical history of your symptoms
• Physical examination
• Laboratory tests (various blood and stool tests)
• Endoscopy (sigmoidoscopy and colonoscopy)
• MRIs, CT scans and X-rays if trying to differentiate from Crohn’s disease
  • We often use a special MRI of the small intestine called MR enterography
• Tissue biopsy (pathology)

Ulcerative colitis is often treated successfully with conventional medical therapy. Less than 20 percent of people with ulcerative colitis need surgery to remove their colon (colectomy). In many cases, symptoms improve with medications taken by mouth, although if your condition is limited to the rectum, you may feel better with topical agents (enemas, suppositories).

Medications used to treat ulcerative colitis include:

• 5-amniosalicylates (5-ASAs)
• Biologic medications
  • anti-TNF therapies (infliximab, adalimumab, golimumab, vedolizumab, ustekinumab, infliximab biosimilars)
• Immunomodulators (mercaptopurine, azathioprine, and methotrexate)
• Novel small molecules (tofacitinib)
• Corticosteroids (Steroids)

Complementary Therapies

The medications above are considered standard medical treatments for ulcerative colitis. A number of complementary therapies are also used, such as probiotics and curcumin. Diets are also used by some patients though there is little data they are helpful. Very few complementary therapies have been studied in clinical trials. If you are using any complementary therapies, be sure to let your doctor know.

The decision to have surgery, the type of surgery and the timing of surgery for ulcerative colitis is made by you, your gastroenterologist and your surgeon. Not everyone needs surgery for UC but many people do. It is estimated that over a lifetime only 25% of patients with ulcerative colitis will require surgery. If you do decide on having surgery, it is intended to improve your quality of life. Whenever possible the decision can be made electively and under as little stress as possible.

The most common reasons to choose to have surgery for UC are:

1. If the condition does not respond, or stops responding to medications. In some cases, despite aggressive medical therapy the disease persists in a way that greatly impacts or threatens your life. If your UC does not respond to medication, surgery would be the last option and sometimes it becomes the better choice for you.
2. If you become dependent on steroids (cannot wean off the steroids).
3. If you suffer a complication from your disease, such as a perforation of your colon.
4. If you develop cancer or dysplasia (precancerous changes). In this case, the colon represents a significant risk to you and it is recommended to be removed.

Removing your entire colon and rectum, or total proctocolectomy can "cure" your Ulcerative Colitis. No colon = no colitis. However, the impact of that surgery needs to be considered.

If you chose to, or require surgery for your ulcerative colitis there are a number of surgical options for reconstruction to create the best possible quality of life for you. You do not need to have an ostomy ("bag") for life.

Based on a number of personal factors some patients choose to have a permanent ileostomy, or stoma. In this case the ends of your intestines are brought through your abdominal wall and you stool into a bag that is attached to your abdomen, under your clothes. Visit the Fellow American College of Surgeons page to get more information about life with a stoma.

More commonly, the surgeon will recreate your rectum out of your small bowel and reattach it to your bottom. The term for this is an ileoanal pouch anastomosis abbreviated as "IPAA," otherwise known as a "J pouch" operation. A "pouch" operation does not return you to your function before you had UC. But it does allow you to defecate into the toilet and greatly diminishes the feeling of "urgency" that you currently have. A typical result from this operation will result in 4-7 bowel movements per day, which are well controlled and tolerated. Rarely, you might need to get up at night to use the bathroom. Some patients will require anti-motility medications to slow their bowels down to get to this result.

IPAA or Pouch surgery is not simple and requires time and effort to heal. Almost all patients who have pouch surgery will require a temporary ileostomy or external "bag" to defecate in (see above). This surgery has the same rare potential complications of most abdominal surgeries like bleeding, infection, and blood clots. Even when there are no complications after surgery there can be consequences including:

• More frequent bowel movements despite medication
• Incontinence (accidents, especially at night)
• Chronic inflammation of the pouch (pouchitis) or the attachment to your anus (cuffitis)
• Impacts on fertility and sexual function (male and female)

For patients with Ulcerative Colitis, surgery can be a great solution. It can provide a medication-free, ostomy-free (no bag) lifestyle and cure the disease. Visit the Crohn's & Colitis Foundation page for more information about about surgery for ulcerative colitis and IPAA – pouch surgery.

No diet has been identified as a direct cause of ulcerative colitis. However, there are dietary factors that may increase the risk of developing ulcerative colitis. Diets high in sugar, refined carbohydrates and fat and diets low in fiber, fruits and vegetables are all more common in patients diagnosed with ulcerative colitis.

Once you are diagnosed with ulcerative colitis, we recommend a healthy, balanced diet. Be sure to talk to your doctor before making major changes in your diet. Restricting fruits and vegetables can lead to nutritional deficiencies and is not likely to improve your symptoms. You may need to reduce your dietary fiber during flares when diarrhea is severe. Dairy products should only be restricted if you have known lactose intolerance.

A number of nutritional deficiencies can develop in patients with active ulcerative colitis.

If you are planning to become pregnant, be sure to discuss this decision with your doctor. In general, women with ulcerative colitis in remission have similar fertility rates and birth outcomes to women without ulcerative colitis. Your doctor may recommend that your ulcerative colitis is in remission before attempting to conceive. Consulting a high-risk obstetrician is also typically recommended.

Women with well-controlled ulcerative colitis appear to have similar birth outcomes to women without the disease. Some studies have shown an increased risk of premature birth (before 37 weeks) and low-birth weight infants. If your disease is active, you may be at greatest risk for these negative outcomes.

The risk of a disease flare during pregnancy is similar to the non-pregnant population. We continue most ulcerative colitis treatments throughout pregnancy. By continuing to take your medications, you reduce your risk of flaring your ulcerative colitis and having complications with your pregnancy. Notable exceptions include methotrexate and tofacitinib which must be stopped prior to pregnancy because they can cause birth defects.

In most cases, the method of delivery (vaginal versus C-section) is up to you and your obstetrician. Only in cases of active perianal disease will a gastroenterologist recommend C-section over a vaginal delivery.

Long-term ulcerative colitis increases your risk for other conditions. The most common include:

Disease flare

About two-thirds of people with ulcerative colitis have a mild disease controlled by medical therapy. About 15-25% of patients end up in hospital at some point needing intravenous steroids. The cumulative risk of a disease flare is 60-70% over 10 years. About 10-20% of patients will require surgery to treat their ulcerative colitis.

Colon cancer

The risk of colorectal cancer increases in people with ulcerative colitis after they have had the disease for eight years. Your doctor may recommend routine surveillance colonoscopies every one to three years to reduce this risk. People with ulcerative colitis who have extensive disease, were diagnosed at a young age, have a family history of colon cancer, or have a diagnosis of primary sclerosing cholangitis (PSC) are at a higher risk of colon cancer. However, if you have PSC, you should start yearly colonoscopies immediately.

Osteoporosis

Mild thinning of the bones (osteopenia) occurs in up to 50 percent of people with ulcerative colitis, and more severe thinning of the bones (osteoporosis) can occur in up to 15 percent. This complication is more common if you have required steroid therapy, are a cigarette smoker, or have low calcium and vitamin D intake.

A special X-ray called a bone mineral density scan (DEXA) is recommended if you have been on steroids, are postmenopausal, a male over age 50, or have had a low-trauma fracture. If you have osteopenia or osteoporosis, your doctor will examine for other causes of bone loss, including an overactive thyroid and low levels of vitamin D. Your doctor may instruct you to take supplemental calcium and vitamin D on a daily basis. You may require other special medications (such as bisphosphonates) to prevent further bone loss. Your doctor may also refer to an endocrinologist for further care.

Nutritional Deficiencies

Nutritional complications may also occur if you have ulcerative colitis. This can include deficiencies of protein, calories, or vitamins. These deficiencies are caused by inadequate dietary intake, intestinal loss of protein, or rectal bleeding as a result of the underlying inflammation.

• Vitamin D Deficiency – Vitamin D deficiency is common in the general public, especially in the Northeastern United States. Patients with ulcerative colitis have even lower levels of vitamin D for a number of possible reasons including reduced consumption of dairy products due to a fear of lactose intolerance and reduced sun exposure because of medications that increase the risk of skin cancer.
• Iron and Magnesium Deficiency – Patients with active ulcerative colitis may be low in iron or magnesium. You should discuss with your doctor whether you should have your iron and magnesium levels monitored.