Pancreatitis runs in some Ky. families, but new treatment may offer hope

Dr. George Fuchs

Written by Dr. George Fuchs, a pediatric gastroenterologist at Kentucky Children’s Hospital.

The pancreas is an organ that serves two main functions: it produces enzymes that aid digestion and it produces insulin, a hormone that controls blood sugar levels.

When the pancreas becomes inflamed, it can wreak havoc on the body. This disease is known as pancreatitis, and there are two types. Acute pancreatitis can appear suddenly and last for days, and chronic pancreatitis can be life-threatening or persistent.

Although outside factors such as gallstones and alcohol abuse may cause pancreatitis, it can also be hereditary. Pancreatitis is a major health problem, especially in Appalachia where multiple family members often struggle to manage the disease. In my first year working at Kentucky Children’s Hospital, I saw more cases of hereditary pancreatitis than in 14 years at my previous institution.

Signs and symptoms

Symptoms of this disease usually begin before the age of 20 with pancreatitis episodes that can last a few days and include severe symptoms such as vomiting, nausea and abdominal pain. Patients may describe the pain as a “rib-crushing” or “stabbing” sensation in the abdomen. Other symptoms include fever, chills, weakness, fatigue and foul-smelling stool.

Because pain usually worsens after eating, many patients eat less frequently, resulting in unintentional weight loss and malnutrition. Children with debilitating pain may need an extended stay in the hospital. Other complications can arise including diabetes, pancreatic cysts and even pancreatic cancer later in adulthood.

Diagnosis and treatment

Chronic pancreatitis can be diagnosed with blood testing and/or imaging studies like CT scans or ultrasounds. Imaging studies are not as accurate for detecting pancreatitis in children as in adults, and blood tests in chronic pancreatitis might not show any abnormalities. Because of this, hereditary pancreatitis is often underdiagnosed and children reporting abdomen pain might not immediately be diagnosed with pancreatitis.

Treatment varies depending on the patient and severity of the disease. Patients may be given IV fluids and medications for pain or asked to fast to let the pancreas rest. Some patients need to follow a strict diet and take pancreatic enzymes to prevent flare-ups.

Managing pain

Because pain is one of the most difficult issues for children with this disease, medications to control pain and nausea are prescribed. The overuse of opioids has become a crisis in this country, affecting our state particularly hard, so this leaves many children and their parents in a difficult position: trying to find a balance of medication that keeps pain at a manageable level without causing addiction.

In recent years, a relatively new surgery for chronic pancreatitis has offered hope for patients. Known as a total pancreatectomy with islet autotransplantation (TPIAT), the procedure involves removing the entire pancreas, saving the islet cells (which produce insulin) and then re-implanting those cells in the liver, where they take up residence and ideally resume their essential function.

Although the procedure is complex, it can potentially offer permanent relief for many children who deal this painful disease on a daily basis.


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