FAP & You

Many kids with FAP (Familial Adenomatous Polyposis) start to get polyps when they are 10, 11, or 12 years old. Some people may be older or younger when they first get polyps. You do not feel polyps grow, and you may never know they are inside you. Some kids may have problems with bowel movements or they may have bright or dark red drops of blood intheir stool, but this does not happen to everyone. People cannot tell from looking at you if you have polyps.

The best way to stay healthy is to be checked for polyps. Beginning around 10 to 12 years of age, doctors recommend a scope. This usually involves a sigmoidoscopy to check inside your rectum and lower bowel. This allows the doctor to look inside your bowel to check for the number and size of the polyps. You should have a scope every year to monitor the polyps. Polyps can be different sizes. The polyps in FAP usually look like round bumps.

Do I Tell My Friends that I have FAP?
Some kids feel better when they can share what is happening with a close friend. Being able to talk about your feelings with someone you trust can help you feel better. Since FAP is so rare, a good friend may not understand the disease but that does not mean he or she does not care about you. Other kids are more private and will prefer to avoid long explanations, especially with kids they are not close to. Sometimes, going over what you want to say ahead of time helps when other kids ask questions about what is going on. Being able to keep your sense of humour really works when there is an awkward moment and you aren't sure what to say.

Some kids want to tell their teacher. Your parents can help you decide if you should tell your teacher. We can give you information booklets that you may want to show to your teacher to help explain FAP.

Will I need an Operation?
Most people who have FAP usually start to get polyps in the large bowel (colon) sometime between the ages of 10 and 18. At the beginning, there may just be a few polyps. Over time more polyps grow and when there are too many polyps you will need to have surgery to remove your colon. Another word for this operation is colectomy (removal of the colon).

When you meet with your surgeon, he or she will go over the best operation for you. Often, the operation can be done laparoscopically. This operation uses special instruments and a camera. Small holes are made in the skin and the instruments are passed into the abdomen. The instruments are designed to fit through tiny openings. This procedure allows smaller holes to be made and this means that the scars are also smaller.

When you wake up from the operation, you usually have a tiny tube in your nose. This tube goes down into your stomach and allows air to easily come up out of your stomach. Once you start passing gas the tube will be pulled out. People do feel pain after having any operation but there are medications to help decrease the pain. Most people are ready to start taking sips of fluids less than a week after the operation.

Most people stay in the hospital for about 10 days. After you go home, you will want to take it easy for a month. Most people are ready to go back to school in 4-6 weeks

How Can I Contact Other Kids with FAP?

We have a "buddy system" which will allows you to contact other kids who have FAP. Through the Registry, you can telephone, write, or e-mail other people your own age who have had the same operation. Many kids and teenagers find it very helpful to talk to someone who understands FAP, in addition to talking with your family. You can contact Registry Co-ordinator at 416-586-4800 ext. 5112 or FGICR.MSH@SinaiHealth.ca and let her know what works best for you.