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Mayo Clinic Q&A: Liver disease is manageable with a plan – Post Bulletin

DEAR MAYO CLINIC: My husband is 45 and has lived with irritable bowel syndrome for many years. He was recently diagnosed with primary sclerosing cholangitis. Are these two conditions related? We were told that a liver transplant was likely in the future. Does everyone need a transplant? Are there other treatments to manage this liver disease?


Primary sclerosing cholangitis

is not associated with

irritable bowel syndrome

but it may be related to another condition usually called

inflammatory bowel disease

or more precisely

ulcerative colitis

. Your husband should be tested for ulcerative colitis if this test has not already taken place.

Primary sclerosing cholangitis is a rare disease that affects the ducts that carry digestive liquid bile from the liver to the small intestine. In people with primary sclerosing cholangitis, the inflammation causes scarring in the bile ducts. The scars make the ducts hard and narrow. Over time, this can cause serious liver damage.

Although many people with primary sclerosing cholangitis eventually need a

liver transplant

, This is not the case of everyone. Regular monitoring and follow-up care can manage symptoms and identify complications of primary sclerosing cholangitis early.

Primary sclerosing cholangitis often progresses slowly. As it progresses, the disease can cause repeated infections and lead to bile duct tumors or liver tumors. Eventually, primary sclerosing cholangitis can lead to liver failure.

On average, it takes about 10 years for most people with primary sclerosing cholangitis to need a liver transplant. However, the rate at which primary sclerosing cholangitis progresses varies greatly. Some people with this condition live a normal lifespan without ever progressing to liver failure or needing a transplant.

To manage care going forward, your husband should work with a hepatologist, who is a doctor who specializes in liver disorders. Based on a number of biological and clinical factors, the hepatologist can help your husband calculate the risk of liver failure and coordinate the necessary ongoing monitoring.

It would also be helpful to discuss with the hepatologist scheduling an appointment


, especially if your husband did not have one. This exam would help determine if underlying ulcerative colitis is a problem. Random tissue biopsies from the colon are recommended, even if the mucosa appears normal, because ulcerative colitis in people with primary sclerosing cholangitis may be mild at first and may not be apparent without tissue samples.

In addition to monitoring your husband’s condition, a hepatologist can also manage the symptoms and complications of primary sclerosing cholangitis, such as fatigue, itching, and infection.

If possible, consider seeing a hepatologist at an academic medical center with a strong hepatology division. The specialists in these centers can offer your family the most up-to-date care. Additionally, these centers often have access to research trials focused on new treatment options.

Although no specific medical treatment is approved for primary sclerosing cholangitis, a number of research trials investigating the treatment of primary sclerosing cholangitis are underway and more are to come. These trials may be a great way for people with primary sclerosing cholangitis to get a treatment they could benefit from years before these agents are approved by the Food and Drug Administration.

Currently, liver transplantation is the only treatment known to cure primary sclerosing cholangitis. Liver transplantation is usually reserved for people with liver failure or other serious complications of primary sclerosing cholangitis. Although rare, it is possible for primary sclerosing cholangitis to recur, even after a liver transplant. —

Dr. Elizabeth Carey

Transplant Hepatology, Mayo Clinic, Phoenix

Mayo Clinic Q&A is an educational resource and is not a substitute for regular medical care. Email a question to MayoClinicQ& For more information, visit