If the person is very young or the polyps look harmless, regular bowel checks may continue for a while. When there are lots of polyps in the bowel, it's impossible to know when one might become a cancer. An operation is the safest way to treat FAP and prevent bowel cancer.
Removing the colon
It may be possible to remove the colon and join the small bowel to the top of the rectum. This is called an ileo-rectal anastomosis (IRA). You'll be able to go to the toilet normally but will need to go more often than before. There's still a risk that polyps may develop in the rectum so you will need a test to check this every year.
Removing the colon and the rectum
Sometimes the lining of the rectum is removed to avoid the risk of polyps forming there. If the rectum is removed, a pouch to replace it can be made using a piece of the small bowel. This is a complex operation. After the surgery you'll be able to go to the toilet normally but you will need to go more often than before. You might need to take anti-diarrhoea medicine. Tests on the rectum won't be needed because the lining (where polyps grow) will have been removed
Having a stoma
Some people will need to have the rectum removed. The end of the small bowel is brought out on to the skin of the tummy (abdomen). The opening is called a stoma and a bag is worn over it to collect bowel motions. It can take a while to get used to having a stoma. There are specialist nurses (stoma nurses) who can help and support you through this.
Having surgery for FAP can be very distressing. But it's the best way to stop you from getting bowel cancer.
Videos and information you might find helpful
Video - Having a stoma: A clinical nurse specialist in stoma care talks about having surgery for rectal cancer and living with a stoma.]
Video - Pat's story: Pat talks about her experiences of living with a stoma after surgery for rectal cancer.]
Pre-implantation genetic diagnosis (PGD)
This is a specialised technique that can help couples affected by FAP to have a child who doesn't have the FAP gene. Some people may want to consider this when planning their family.
PGD involves checking the genes of embryos (fertilised eggs) that have been made by IVF (in vitro fertilisation) treatment. A single cell is taken from each embryo and is checked for the altered gene that causes FAP. Only embryos that are unaffected by the gene are then implanted in the womb, and if a baby develops from the embryo it should not have FAP.
There are many things to be taken into consideration if you're thinking about having PGD. For example, very occasionally, testing may miss the altered FAP gene, or sometimes embryos may be damaged in the process. PGD isn't suitable for everyone. There are also risks associated with the IVF process itself. It's important to discuss these risks in detail with your genetic counsellor or geneticist, or a specialist at a fertility clinic.