If you have primary sclerosing cholangitis with ulcerative colitis, it can affect the type of treatment you receive and the types of complications you may experience.

Researchers have established a connection between primary sclerosing cholangitis (PSC) and ulcerative colitis (UC). PSC is a rare condition that causes scarring in the bile ducts of your liver.

The scarring can ultimately lead to liver damage and potentially liver failure in some severe cases. Most people who have PSC also have UC.

While doctors don’t know exactly what causes PSC, they have established that UC is a risk factor for PSC. Keep reading to learn more about the potential connections between these two conditions.

An estimated 60 to 80% of people with PSC also have UC or another form of inflammatory bowel disease, and PSC affects about 5% of people who have UC. Neither condition has a known cause, but both conditions are the result of inflammation.

Doctors do know that males tend to experience PSC at higher rates. And there may be a strong genetic component to both conditions, so having a family history of both conditions may increase the risk of developing them.

In addition to these risk factors, there are some theories that UC could increase a person’s likelihood of experiencing PSC. The authors of a 2021 research review suggest that UC may allow bacteria to leak into the liver’s circulation, which can lead to inflammation. But research has not yet revealed the definitive effects of UC on the liver.

Several treatment approaches for UC may change if you also have PSC.

Monitoring

The results of several studies suggest that people who have both PSC and UC typically have milder UC symptoms than those who have only UC. However, the risk of colon cancer is higher in people who have both conditions. As a result, the recommended frequency for undergoing colonoscopies may change.

Medications

People with both UC and PSC are less likely to need medications that doctors usually prescribe to treat more severe cases of UC, such as anti-tumor necrosis factor alpha (anti-TNF-alpha) therapy and corticosteroids. But some people with both conditions may need treatment with these medications.

Surgery

If UC worsens and causes significant damage, a doctor may recommend surgery to remove the diseased portion of your colon. This surgical approach may require an ileostomy, a procedure in which a surgeon will route a portion of your intestine through your abdominal wall. This gives your body time to heal and recover from significant inflammation.

After the healing time, a doctor may perform a restorative surgery in which they reverse the ileostomy so that your stool will once again exit via your rectum. A 2018 study of restorative surgeries found that there was no higher risk that the procedure would fail in people with both PSC and UC than in those with only UC.

However, people with PSC and UC are more likely to experience pouchitis as a complication of restorative surgery than people with only UC.

While pouchitis will not always lead to pouch failure, people with PSC and UC are more likely to have pouch failure if they have pouchitis as a surgical complication. People who have PSC and UC are also more likely to have chronic pouchitis.

A 2019 review found that people with both PSC and UC were more likely to develop abnormal colon tissue cells, such as precancerous and cancerous cells. Those with both UC and PSC are also at greater risk of the following:

Children with both PSC and UC typically experience less severe bowel disease and fewer hospital admissions related to their condition than those who have only UC. However, children with both conditions are more likely to experience colorectal cancer and impaired growth than children with UC alone.

Living with PSC and UC

Currently, there are no treatments for PSC, and the only cure for UC requires major surgery. But support groups and resources such as the following can help you live better with both conditions:

  • Crohn’s & Colitis Foundation: The Crohn’s & Colitis Foundation offers support programs, discussion boards, and the opportunity to ask experts questions.
  • United Ostomy Associates of America Inc: For those who need an ostomy to treat UC, this organization offers more than 300 support groups across the United States.
  • National Ulcerative Colitis Alliance: This organization offers a Facebook page that provides updates on the latest treatments for UC and ways to find support.
  • PSC Partners Seeking a Cure: This organization offers a patient registry that allows you to create a profile that will notify you of new research studies and treatments you may qualify for.

Researchers have theories about why people more commonly experience PSC and UC together, but they have not established a specific link.

If you’ve received diagnoses of both conditions, it’s important to seek support. Options such as participating in research studies and talking with others who have these conditions can help improve your quality of life.