What Is Pancolitis?

In ulcerative colitis (UC), location is everything. There are several types of this autoimmune disorder, and they’re classified by the part of the colon that is inflamed. If you have pancolitis, inflammation runs through the whole length of your colon.

Why does location matter? Because the more of your colon that’s inflamed, the more severe your symptoms could be. And your doctor considers the type of UC you have when deciding which treatments to recommend.

Pancolitis is inflammation in your entire colon, also called your large intestine. The inflammation goes from your rectum (the bottom of your large intestine that sits right on top of your anus) to the very top of your colon. UC may have been that widespread when you were first diagnosed, or it could have started in a smaller segment of your colon and grown from there. Anywhere from 14% to 35% of people with ulcerative colitis have pancolitis, depending on which study you read.

Pancolitis is one of four types of ulcerative colitis, each of which causes inflammation in a different part of the colon:

Ulcerative Proctitis

In this mild form of UC, inflammation is confined to the rectum (usually no more than the last six inches), according to New York-Presbyterian. Pain and bleeding from the rectum, along with an urgent need to have a bowel movement, are indications that you have ulcerative proctitis. Unlike some other types of UC, this one doesn’t increase your risk for colorectal cancer.

Left-Sided Ulcerative Colitis

As the name suggests, inflammation in this form of UC affects the curve in the top-left part of your large intestine—the part of your colon that goes from your rectum to your splenic flexure, according to the Crohn’s & Colitis Foundation. Symptoms include bloody diarrhea, appetite loss, weight loss, and pain specifically on the left side of your belly.

Proctosigmoiditis

This is a subtype of left-sided ulcerative colitis that inflames the rectum and the sigmoid colon, the portion of the colon that attaches to your rectum, per the Crohn’s & Colitis Foundation. Symptoms are the same as for left-sided ulcerative colitis.

Pancolitis

In pancolitis, inflammation affects the entire length of the colon. It can cause symptoms like diarrhea, abdominal pain, weight loss, and fatigue, according to Yale Medicine.

You may be wondering if there were factors that made you more prone to developing ulcerative colitis. There is a genetic component to inflammatory bowel disease (IBD), meaning that if you have it, there’s a chance that one of your family members has it too. An aunt or sibling, for instance, might have UC or Crohn’s disease, the other type of IBD that can affect not only the colon but any spot along the entire digestive tract.

While genes can make you more prone to UC and related disorders, something else actually triggers the disease. That catalyst might be a challenge to your immune system, an infection, a medication you take, or something in your environment. Genes, lifestyle habits, and your immune system function all factor into your odds of getting pancolitis and other types of UC.

According to Maia Kayal, M.D., a gastroenterologist and assistant professor in the division of gastroenterology at the Icahn School of Medicine at Mount Sinai in New York City, you may be more likely to have pancolitis if you:

• Have other family members with inflammatory bowel disease (IBD)

• Smoke, or you smoked in the past

• Take birth control pills, hormone replacement therapy, or NSAID pain relievers like ibuprofen or aspirin

Other possible risk factors for UC in general include:

• Being of European and/or Ashkenazi Jewish ancestry

• Having another autoimmune condition

• Long-term use of antibiotics

No matter which type of ulcerative colitis you have, you can expect some diarrhea. “When the whole colon is involved, most of the time people have frequent diarrhea, with or without blood,” says Russell Cohen, M.D., a professor of medicine and director of the Inflammatory Bowel Disease Center at the University of Chicago Pritzker School of Medicine.

Finding blood in the toilet when you poop can be scary. The bleeding comes from sores called ulcers that pancolitis inflammation creates in the lining of your colon. The closer to your rectum those sores are, the brighter red the blood will look. Blood that comes from higher up in your digestive tract is darker—usually brown or black. Bleeding can be alarming, but it’s one of the symptoms that UC drugs were designed to treat.

Other symptoms of any type of UC, including pancolitis, are:

• Abdominal pain or discomfort

• Fatigue

• Fever

• Reduced appetite

• Tenesmus, or when you have a sudden and constant feeling that you need to have a bowel movement

• Weight loss

How severe your diarrhea and other symptoms get depends, in part, on how much of your colon is inflamed. “People who have more of their colon involved may be at risk for more severe disease,” explains Dr. Kayal.

If you’ve been having symptoms like bloody diarrhea and cramps, the only way to know for sure whether you’ve got pancolitis is through a colonoscopy. After giving you medication to sedate you, your doctor will put a long, flexible scope with a light and very small camera on the end up into your colon to look for signs of sores and inflammation in your large intestine. If you’re particularly nervous about getting a colonoscopy given your symptoms, take heart: Colonoscopies are “very safe and effective ways of diagnosing patients with inflammation of the colon,” Dr. Cohen says. Plus, “You’re sleeping through it.”

While the scope is checking out your colon, your doctor might take a small piece of tissue from inside your colon, known as a biopsy. The tissue sample goes out to a lab, where a technician examines it under a microscope for signs of disease. A biopsy is a way for your doctor to get more information about your pancolitis.

After you get a diagnosis like pancolitis, you might be curious about what your future will look like. Will your disease get worse? Could pancolitis cause serious long-term problems?

Pancolitis damages the colon, explains Dr. Kayal, which eventually can lead to certain complications such as:

• A perforation (hole) in the colon

• Fulminant colitis, a more severe form of UC

• Severe bleeding

• Toxic megacolon, extreme inflammation in the colon

Your risk for colorectal cancer also increases the longer you live with pancolitis, according to a study in Medicine. That’s because inflammation causes cells in your colon to change. In time, those cells could turn into cancer.

While these are scary complications to ponder, don’t panic: There are good treatments available to prevent them. Let’s look at those now.

The first line of treatment for ulcerative colitis, including pancolitis, is medication. The goal of UC meds is to ease inflammation in your colon lining so it has time to heal and to reduce symptoms like urgent diarrhea so you can get on with your life. As with many conditions, which treatments your doctor recommends will depend on the severity of your disease.

Starting on treatment as soon as possible is important because it will help you avoid complications. To get the right treatment, it’s best to see a gastroenterologist—a doctor who specializes in treating diseases of the GI tract. Make an appointment with an expert “sooner rather than later,” Dr. Cohen suggests. “Even if you have to travel [to see one], you should definitely do it.”

Medications for Mild to Moderate Pancolitis

With UC, mild to moderate disease means that you poop fewer than four times a day and you have only mild inflammation throughout the colon. A group of anti-inflammatory drugs called aminosalicylates (5-ASAs) are often recommended for people living with mild-to-moderate UC. They include:

• Azulfidine (sulfasalalzine)

• Asacol HD, Pentasa, Lialda, Apriso, Delzicol, Canasa, and Rowasa (mesalamine)

• Dipentum (olsalazine)

• Colazal and Giazo (balsalazide)

5-ASAs come as pills or, in some cases, as a rectal suppository or enema, Dr. Kayal explains.

Medications for Severe Pancolitis

If your disease is severe, meaning that you poop more than six times a day, your poop is often bloody, and you have signs of damage in your colon, you will likely need a more powerful medication such as a steroid, an immunomodulator (such as methotrexate), a biologic, or a small-molecule drug such as a JAK inhibitor or S1P receptor modulator. Also known as advanced therapies, biologics and small-molecule drugs are newer medications that work more precisely by targeting the parts of your immune system that are overreacting and attacking your colon.

Biologics are delivered through a needle, either as a shot or an infusion. Some examples are:

• Entyvio (vedolizumab)

• Humira (adalimumab)

• Remicade (infliximab)

• Simponi (golimumab)

• Stelara (ustekinumab)

There are two JAK inhibitors and one S1P receptor modulator approved by the U.S. Food and Drug Administration (FDA) for treating moderate to severe ulcerative colitis, all taken orally:

• Rinvoq (upadacitinib)

• Xeljanz (tofacitinib)

• Zeposia (ozanimod)

Lifestyle Changes for Pancolitis

While they are not a substitute for medication, lifestyle changes can help keep your symptoms in check as well as improve your health overall. Steps your doctor might recommend include:

• Eating an overall healthy diet such as the Mediterranean diet

• Exercising

• Limiting high-fiber foods in your diet during a flare

• Managing stress

Your doc can give you specific advice on these as well as other lifestyle changes to try.

Surgery for Pancolitis

If you’ve tried several medications but they’re not controlling your symptoms, or you have complications, you may need to have a surgical procedure called colectomy or proctocolectomy to remove the damaged parts of your colon. Having pancolitis, especially if the inflammation is severe, increases the likelihood that you’ll need surgery since it means the entirety of your colon is affected.

If you are experiencing symptoms like belly pain, bleeding from your rectum, or a fever that doesn’t go away and you haven’t already been diagnosed with pancolitis or another form of UC, call your primary care doctor or see a gastroenterologist to be evaluated, per Mount Sinai. If you’ve already been diagnosed, you should call your GI doc if you experience any new or worsening symptoms or if you feel your current treatment regimen isn’t helping.

Time with your doctor is limited, so come prepared. Before your appointment, you should start keeping a diary of any symptoms you’ve been having, according to Mayo Clinic. Log all your symptoms—even ones that seem unrelated to UC (sometimes symptoms are unexpected).

You can use your symptom diary to guide the conversation with your doctor. While you’re at it, note any changes to your diet or recent life changes (included major stressors like a divorce or job loss) that might be affecting your health.

Bring a list of all the medicines you take, too, per Mayo Clinic. It’s possible that a drug you’re on is behind your bowel symptoms.

Not sure what to ask your doctor during the visit? Here are a few suggested questions to start the conversation:

• What do you think caused my symptoms?

• Which tests will I need to diagnose pancolitis?

• What treatments are available? Which one do you recommend?

• What kinds of side effects could pancolitis medications cause?

• How often should I see you for follow-up visits?

• What kinds of changes should I make to my diet?

Have your phone or a notepad ready to write down the answers. Or better yet, bring a friend or family member to take notes for you so that you can focus on your doctor’s advice.

Pancolitis is a type of ulcerative colitis that inflames your whole colon. Symptoms like diarrhea, cramps, weight loss, and tiredness are clues that you have pancolitis, but only a colonoscopy can confirm the diagnosis. While pancolitis (and other types of UC) are chronic conditions, there are effective treatments including anti-inflammatories and biologics, which can get symptoms under control and prevent complications.