Pancolitis

Pancolitis is a form of ulcerative colitis in which inflammation affects the entire colon. Ulcerative colitis is a chronic inflammatory bowel disease that causes inflammation in the lining of the colon and rectum. It usually starts in the rectum and can extend through part or all of the colon. Pancolitis also may be called ulcerative pancolitis, pan-ulcerative colitis or extensive colitis. The name describes the extent of ulcerative colitis, not a separate disease.

The term pancolitis also can describe inflammation throughout the colon caused by conditions other than ulcerative colitis. These can include Crohn's disease, infections such as C. difficile and graft-versus-host disease. Causes also can include reduced blood flow to the colon and the effects of certain medicines or radiation treatment.

The exact cause of ulcerative colitis is not known. Genes, the immune system, bacteria in the gut and environmental factors all may play a role.

Ulcerative colitis often has periods when symptoms get worse, called flare-ups or flares, and periods when symptoms improve or go away, called remission. Medicines can reduce inflammation and help keep the disease in remission. Surgery to remove the colon and rectum may be needed in some situations.

Pancolitis can be mild, moderate or severe. Having inflammation throughout the colon does not by itself mean the disease is severe. To understand how severe the disease is, healthcare professionals consider symptoms, the amount of inflammation and how the disease affects daily life.

Ulcerative colitis often is described by how much of the colon is inflamed:

• Ulcerative proctitis affects only the rectum, the last part of the large intestine.
• Left-sided colitis affects the rectum and the left side of the colon.
• Pancolitis affects the entire colon.

Symptoms of pancolitis can vary depending on how active the inflammation is. Some people have mild symptoms, while others have more frequent or severe symptoms during a flare.

Common symptoms of pancolitis include:

• Loose stools, also called diarrhea.
• Blood or mucus in the stool.
• A sudden need to have a bowel movement.
• Frequent bowel movements.
• Stomach pain or cramping.
• Feeling as though you still need to have a bowel movement after using the bathroom.
• Bowel movements during the night.
• Fatigue.
• Weight loss.
• Fever, especially with more severe inflammation.

Pancolitis flare-ups

A flare is a period when ulcerative colitis becomes active and symptoms worsen. During a pancolitis flare, diarrhea may become more frequent, and stools may contain blood or mucus. Stomach pain or cramping, urgency, and fatigue also may increase. More severe flares can cause fever, dehydration, weight loss and frequent bloody stools.

How a flare is managed depends on how severe it is and which treatments you are already using. The healthcare team may review your symptoms and use blood tests, stool tests or imaging, such as a CT scan, to check for inflammation. Sometimes, the colon also may be examined. Treatment may include starting a new medicine or changing a medicine you already take. Severe flares may need treatment in a hospital.

When to seek care

See a healthcare professional if you have ongoing changes in your bowel habits or symptoms such as:

• Belly pain.
• Blood in the stool.
• Diarrhea that does not improve.
• Diarrhea that wakes you from sleep.
• An unexplained fever.

If you have already been diagnosed with pancolitis, contact your healthcare team if your symptoms suddenly become much worse or you have heavy bleeding, severe belly pain or signs of dehydration. Severe ulcerative colitis can cause life-threatening complications.

The exact cause of pancolitis and other forms of ulcerative colitis is not known. Researchers think several factors may work together, including genes, the immune system, the gut microbiome and environmental exposures. Some genes can raise the risk of ulcerative colitis, but genes alone do not determine who develops the disease.

Ulcerative colitis is an immune-mediated condition. This means the immune system contributes to ongoing inflammation in the colon. It is not clear why this immune response develops in some people.

Stress does not cause ulcerative colitis. But stress may make symptoms worse. Some research suggests that people with ulcerative colitis who feel more stressed may be more likely to have a flare, although it is not clear whether stress directly increases inflammation in the colon.

There are no known risk factors that specifically predict who will develop pancolitis rather than another form of ulcerative colitis. Risk factors are generally described for ulcerative colitis as a whole.

Factors linked with a higher chance of developing ulcerative colitis include:

• Genetics. Many gene changes have been linked with ulcerative colitis and other forms of inflammatory bowel disease, although genes alone do not determine who develops ulcerative colitis.
• Age. Ulcerative colitis can begin at any age, but it is most often diagnosed in younger adults.
• Environmental factors. Researchers have identified several environmental factors that may affect the risk of ulcerative colitis, but their exact roles are still being studied.

Pancolitis can cause complications, especially during a severe flare-up or when inflammation has been present for many years. Possible complications include:

• Heavy bleeding from the colon.
• Anemia, which means the blood does not carry enough oxygen to the body.
• Dehydration from frequent diarrhea.
• A severely swollen colon, called toxic megacolon.
• A hole or tear in the colon.
• Blood clots.
• Inflammation outside the colon, such as in the joints, skin or eyes.
• Liver and bile duct conditions.

Colon cancer

Having ulcerative colitis that affects a large part of the colon raises the risk of colorectal cancer. The risk rises the longer a person has the disease and when inflammation remains active over time. People with pancolitis have a higher risk of colorectal cancer than people whose ulcerative colitis affects only a small part of the colon.

To diagnose pancolitis, the healthcare team looks at symptoms, medical history, imaging scans and test results. Pancolitis is diagnosed when ulcerative colitis affects the entire colon. Because infections and other conditions can cause symptoms similar to those of pancolitis, testing also helps rule out other causes.

Tests may include:

• Blood tests. These can check for anemia and signs of inflammation.
• Stool tests. These can look for infection and may measure calprotectin, a protein that can increase when the intestines are inflamed.
• Colonoscopy. A thin, flexible tube with a camera is used to look inside the colon. This helps show where inflammation is located and how much of the colon is affected.
• Biopsy. During colonoscopy, small tissue samples are taken from the colon and examined under a microscope. These samples help confirm ulcerative colitis and rule out other conditions.
• Computerized tomography (CT) scan. A CT scan may be used if the healthcare team is concerned about a serious complication.

Colonoscopy and biopsy also can help distinguish ulcerative colitis from Crohn's disease, another type of inflammatory bowel disease that can cause similar symptoms.

Treatment for pancolitis depends on how severe the disease is, how active the inflammation is and which treatments have already been tried. Because pancolitis affects the entire colon, treatment usually needs to reach the whole colon.

Medicines

Treatment for pancolitis usually involves medicines. Medicines cannot cure ulcerative colitis. But they can reduce inflammation, ease symptoms and help keep the disease in remission.

• 5-aminosalicylates. These medicines, also called 5-ASAs, reduce inflammation in the lining of the colon. They often are used to treat mild to moderate ulcerative colitis.

  For pancolitis, 5-ASAs usually are taken by mouth so the medicine can reach inflammation throughout the colon. Mesalamine (Apriso, Lialda, others) is one commonly used 5-ASA.

• Corticosteroids. Corticosteroids are medicines that quickly reduce inflammation. Examples include prednisone and budesonide (Entocort EC). Corticosteroids may be used when a flare does not improve enough with other treatments or when the disease is more active.

  Corticosteroids are generally used for a short time because long-term use can cause serious side effects. They are not used to keep ulcerative colitis in remission over the long term.

• Biologic medicines. These medicines, also called biologics, target specific parts of the immune system involved in inflammation. They may be used for moderate to severe ulcerative colitis or when other treatments have not worked well enough.

  Biologic medicines used for ulcerative colitis include medicines that block tumor necrosis factor, also called TNF, and medicines that target other parts of the inflammatory response. Examples include infliximab (Remicade), adalimumab (Humira), golimumab (Simponi), vedolizumab (Entyvio), ustekinumab (Stelara), risankizumab (Skyrizi), mirikizumab (Omvoh) and guselkumab (Tremfya). Some biologics are given by injection. Others are given through a vein, called an infusion.

• Small molecule medicines. These medicines are taken by mouth and block specific signals that contribute to inflammation.

  These include Janus kinase (JAK) inhibitors such as tofacitinib (Xeljanz) and upadacitinib (Rinvoq). Another group, called sphingosine 1-phosphate receptor modulators, includes ozanimod (Zeposia) and etrasimod (Velsipity).

• Immunomodulators. These medicines reduce certain immune system responses that contribute to inflammation. Medicines such as azathioprine (Azasan, Imuran) and mercaptopurine (Purinethol, Purixan) may be used in some situations.

  Immunomodulators can affect the liver, pancreas and blood cells, so regular blood tests may be needed while taking them.

Surgery

Surgery may be recommended when medicines no longer control pancolitis, when treatment causes serious side effects, or when complications, precancerous changes or colorectal cancer develop.

Surgery for pancolitis usually removes the colon and rectum. This operation is called a proctocolectomy. Afterward, there are different ways for stool to leave the body.

One option is an ileoanal anastomosis, also called J-pouch surgery or ileal pouch-anal anastomosis surgery. In this procedure, the surgeon creates a pouch from the end of the small intestine and connects it to the anus.

Another option is an ileostomy. The surgeon creates an opening in the stomach and brings the end of the small intestine through it. Stool passes through the opening into a collection bag.

Removing the colon and rectum eliminates ulcerative colitis from those organs, but this surgery can lead to other health concerns that need ongoing care.

Treatment of severe flares

A severe flare may need treatment in a hospital. Treatment can include corticosteroids given through a vein and close monitoring for complications.

If symptoms do not improve after several days, medicines such as infliximab or cyclosporine may be used. Surgery may be needed if medicines do not work or if complications develop. Complications may include a hole in the colon, severe bleeding or toxic megacolon, a condition in which the colon rapidly swells.

Cancer surveillance

Because pancolitis affects the entire colon, the risk of colorectal cancer is higher than it is when ulcerative colitis is limited to a smaller area. The risk also increases the longer a person has the disease and when inflammation remains active over time.

People with pancolitis generally begin colonoscopies to check for cancer about eight years after the disease starts. How often colonoscopy is repeated depends on factors such as ongoing inflammation, previous test results, family history and other health conditions.

Pancolitis is a long-term condition. Symptoms may come and go, with periods of active disease, called flares, and periods when symptoms improve or go away, called remission.

Many people are able to manage symptoms and inflammation with treatment. The course of the disease varies from person to person, and treatment may need to change over time if symptoms or inflammation return.

The overall risk of death from ulcerative colitis is low, but severe inflammation and complications can be life-threatening. These can include heavy bleeding, a severely swollen colon, a hole in the colon or serious infection.

Medicines can control ulcerative colitis but do not cure it. Surgery that removes the colon and rectum can eliminate ulcerative colitis from those organs. Some people still need ongoing care after surgery for problems related to an ileostomy or an internal pouch.

Some people with pancolitis are interested in probiotics, supplements or other complementary treatments. These approaches should not replace medicines prescribed to control ulcerative colitis.

Probiotics

Probiotics are live microorganisms that are found in some foods and supplements. Some research suggests that certain probiotic products may help people with ulcerative colitis reach or maintain remission, but the quality of the evidence is low.

Because probiotic products are not all the same, talk with your healthcare team before using one. A probiotic that has been studied for ulcerative colitis may be very different from products sold for general digestive health.

Daily habits can help you manage pancolitis symptoms and support your treatment. These steps do not cure the disease or replace medicine, but they may make symptoms easier to manage.

Diet and nutrition

There is no single diet that has been shown to prevent ulcerative colitis flares. Foods that cause symptoms also can vary from person to person.

General suggestions include:

• Eat a balanced diet. A Mediterranean-style diet is a good option for overall health. It focuses on fruits, vegetables, whole grains, beans, fish and healthy fats such as olive oil.
• Adjust fiber during a flare. High-fiber foods may be harder to tolerate when symptoms are active. Softer, lower-fiber foods may be easier to eat for a short time. As symptoms improve, fruits, vegetables and other sources of fiber usually can be added back gradually.
• Avoid unnecessary food restrictions. There is no good evidence that everyone with ulcerative colitis needs to avoid gluten. A gluten-free diet usually is not needed unless you have celiac disease or another reason to avoid gluten.
• Watch for foods that worsen your symptoms. Keeping track of what you eat and how you feel afterward may help identify foods that are harder for you to tolerate.
• Stay hydrated. Diarrhea can cause your body to lose fluids. Drinking enough fluids is especially important during a flare.
• Pay attention to nutrition. Ulcerative colitis can raise the risk of low iron or vitamin D levels and poor nutrition. If you are losing weight or having trouble eating enough, a registered dietitian can help.

Managing flares

A flare is a period when symptoms return or get worse after a period of improvement.

During a flare:

• Contact your healthcare team if symptoms are getting worse or your usual treatment is not helping.
• Keep track of changes in diarrhea, bleeding, belly pain and other symptoms.
• Take medicines as prescribed. Do not stop or change ulcerative colitis medicines without talking with your healthcare team.
• Keep up with recommended blood tests, stool tests and colonoscopies. These tests help your healthcare team check inflammation and see how well treatment is working.
• Make sure you are getting enough fluids and nutrition, especially if diarrhea is frequent or you are eating less.

Handling stress

Stress does not cause ulcerative colitis. But it may make symptoms worse. Some research suggests that people who feel more stressed may be more likely to have a flare, although it is not clear that stress directly increases inflammation in the colon.

Ways to manage stress may include exercise, relaxation techniques, mindfulness or counseling. These approaches can support well-being, but they do not replace treatment for inflammation.

Living with pancolitis can be stressful, especially when symptoms are unpredictable or interfere with daily activities. Some research suggests that people with ulcerative colitis who feel more stressed may be more likely to have worsening symptoms or a flare.

Stress-reduction approaches such as cognitive behavioral therapy, mindfulness and biofeedback may help some people cope with stress. These approaches are not a substitute for medicines that treat inflammation.

If symptoms are affecting your mood, sleep or quality of life, talk with your healthcare team. They can help identify additional support that may be useful.

Symptoms of pancolitis may first lead you to see your primary healthcare professional. You may then be referred to a specialist who treats digestive diseases, called a gastroenterologist.

Here's some information to help you get ready for your appointment.

What you can do

When you make the appointment, ask whether there is anything you need to do ahead of time, such as fasting before a test. Make a list of:

• Your symptoms, including when they started and whether they come and go.
• How often you have bowel movements and whether you notice blood or mucus.
• Any recent weight loss, fever, fatigue or belly pain.
• Key personal information, including major stresses or recent life changes.
• All medicines, vitamins, supplements and herbal products you take, including the doses.
• Questions you want to ask your healthcare professional.

If possible, consider taking a family member or friend with you to help remember the information you receive.

Questions you may want to ask include:

• What is the most likely cause of my symptoms?
• What tests do I need?
• How will you tell if ulcerative colitis affects my entire colon?
• How severe is my disease?
• What treatments are available?
• Which treatment do you recommend and why?
• What side effects could treatment cause?
• How will we know if treatment is working?
• How often will I need a colonoscopy?
• Are there foods I should avoid during a flare?
• Could I eventually need surgery?
• What symptoms should prompt me to contact my healthcare team or seek urgent care?

What to expect from your healthcare professional

Your healthcare professional may ask questions such as:

• When did your symptoms start?
• Are your symptoms always present, or do they come and go?
• How often do you have diarrhea?
• Have you noticed blood or mucus in your stool?
• Do you have belly pain?
• Do you wake during the night because of diarrhea?
• Have you lost weight without trying?
• Have you had fever or unusual fatigue?
• Does anything seem to make your symptoms better or worse?
• Have you recently traveled or taken antibiotics?
• Does anyone else in your household have diarrhea?
• Have you had issues with your joints, eyes, skin or liver?
• Do you have a family history of ulcerative colitis, Crohn's disease or another inflammatory bowel disease?