Familial Adenomatous Polyposis (FAP)

What are the signs and symptoms of familial adenomatous polyposis?

People with FAP usually first develop symptoms in their mid-teens, including:

• Abdominal pain
• Diarrhea
• Rectal bleeding
• Changes in character of the stool (diarrhea, bloody stool, constipation)
• Gas, bloating and fullness

FAP may also lead to growths or tumors in other parts of the body, including the soft tissues (desmoid tumors), pancreas, biliary tree, thyroid and other parts of the gastrointestinal system.

What tests are used to diagnose familial adenomatous polyposis?

If you have FAP, your child’s doctor may recommend genetic testing to look for the genetic change that causes the condition. Your child’s doctor may also recommend imaging tests, such as a CT scan or colonoscopy to look for polyps.

We diagnose FAP based on several factors, including a family history of FAP and/or colon cancer. We also diagnose FAP in children who have 100 or more polyps in the intestine or fewer than 100 polyps and a family history of the disease.

Why choose us for a colonoscopy for FAP?

If your child needs a colonoscopy, they’re in expert hands. Our gastroenterology and surgical teams are trained specifically to work with children. We use equipment and procedures designed with kids in mind. The child life team at Children’s Colorado is here to help prepare children for the procedure with age-appropriate information and support.

What to expect from a colonoscopy?

Most of the time, children do colonoscopy prep at home to remove stool from the colon. Your child will take oral prep medication or an enema.

During a colonoscopy, your child is under general anesthesia to keep them comfortable. Your child’s doctor uses a flexible tube with a camera to examine the colon. We remove any polyps we find and send them to our lab for analysis. The results typically take a few days.

How is familial adenomatous polyposis treated?

We treat FAP with a combination of several therapies. Your child’s doctor removes polyps during a colonoscopy. If any of the polyps are cancerous or if there are many polyps, we may recommend surgical removal of part or all of the colon (colectomy). This surgery is usually performed in the late teens or early 20s as a preventative measure against colon cancer later in life.

Children who have FAP need long-term follow-up care and imaging tests for the rest of their lives to prevent colon cancer.

Why choose us for treatment of familial adenomatous polyposis?

Our team includes national leaders in the diagnosis and treatment of FAP who publish research on hereditary syndromes and cancer, as well as contribute to treatment in our Polyposis Program. In addition to expert surgeons, we have extensive experience in caring for children that have syndromes leading to the development of polyps. Our multidisciplinary approach to the treatment of FAP provides the most leading-edge care possible for our patients and their families.

Helpful resources

The Colorectal Cancer Alliance provides support for patients and families, caregivers, and survivors. This organization also raises awareness of preventive measures and inspires efforts to fund critical research for diseases like familial adenomatous polyposis.