Kid's Korner
Kids' Korner offers information about different polyp (bumps that grow inside the bowel) conditions that can occur during childhood and adolescence. This area answers your questions and talks about worries that children and teenagers may have which are quite different from adults.
It is important for kids to understand how their body works. Kids
have really excellent questions about intestines ("guts") and polyps. We
hope Kids' Korner is interesting and helpful to you. We want kids to
understand what certain tests are and what they are for. If kids
understand more about their treatment, they will feel more in control of
their body.
Kids' Korner is divided into the following sections:
What is my Intestine?
Your intestine is a very long tube that is curled inside your stomach. The two main parts of the intestine are the small intestine and the large bowel. Another word for the large bowel is 'colon'.
Where does my Food Go?
All of the food you eat moves from your stomach into your small intestine. Your body uses the food to keep you healthy. The extra food keeps moving down into your colon.
The waste passes through your colon and comes out when you use the toilet.
Buddy System
You may feel like you are the only person in your school or area who has polyps.
It can be helpful to meet other kids who are going through the same thing. Often, kids with the same condition can really understand what you are going through.
We have a "buddy system" that allows you or your family to be in touch with other kids.
Kids decide if they want to connect with another person in the same situation. Some kids want to talk on the telephone, others like to use e-mail or write letters. Some kids want to meet face-to-face. However you want to participate, let the buddy system help you.
Please contact the Registry Co-ordinator, at 416-586-4800 ext. 5112 or fgicr.msh@sinaihealth.ca if you want to meet a buddy or learn more about the buddy system.
Polyps & You
What Are Polyps?
Polyps are bumps that can grow inside the bowel. Polyps usually have the shape of a grape or a mushroom. You can't feel polyps grow. Polyps usually do not make you feel sick.
Are there Different Types of Polyps?
Yes. It's important to find out from your doctor what type of polyps you have because the conditions are very different. Polyp conditions are treated and monitored very differently depending on what type of polyps you have. Intestinal polyps in children are of two major types: 1) adenomatous polyps and 2) inflammatory (also called juvenile) polyps.
Do I Get to Talk to My Specialist?
Definitely. The first meeting with the Paediatric Gastroenterologist is a chance to ask all the questions you may have. It's an opportunity for you and your parents to meet the doctor so you can feel comfortable. Some kids and teenagers like to have a chance to talk to the doctor privately for a few minutes as well (it's up to you). At the first appointment we may talk about a test to look for polyps. We can discuss ways to make the experience as positive as possible for you. We can work with you to book a date for the polyp test which works best with your school schedule.
How Do Doctors Check For polyps?
Doctors check for polyps using a colonoscope. A colonoscope is an instrument that uses a thin tube with a light on the end to see inside your intestines. This is not an operation and no cuts are made in the skin. The colonoscope is passed through your rectum into the colon (large intestine) to check the lower bowel.
Depending on where the doctor needs to check this test may be called a sigmoidoscopy or a colonoscopy. A colonoscopy is a test where the tube is placed into your rectum and carefully passed around the colon to the very end of the right side. A sigmoidoscopy is a test where the tube only goes into the left side of the colon. There is a tiny camera on the end of the colonoscope that shows the inside of your intestine on a television monitor. If polyps are found they often can be removed during the colonoscopy.
How Do I Get Ready for the Scope?
The preparation for a scope depends on the exact test you are having. Sometimes the doctor only needs to look a short distance into your large bowel (sigmoid colon). This type of test is called a sigmoidoscopy. If the doctor needs to look at your whole large bowel (colon) this is called a colonoscopy.
In order to clearly evaluate inside the colon (large bowel) it is important to clean out the bowel. During the week before the endoscopy most patients take a liquid medicine (usually one tablespoon per day of lactulose) at home to help soften the stool. Some kids are able to drink a special clean-out liquid at home. You can help decide with your doctor and nurse the best way to prepare your intestine for the test.
The remainder of the preparation is completed on the Paediatric ward at the hospital on the day of the procedure. Many patients receive enemas into the rectum. An enema is fluid which the nurse will give you to help your body empty all of the stool. Your parents will be with you during all of this. Some kids like to have a tour of the ward in advance so they know exactly what to expect on the day they come back for the test. A 'child life worker' is available to stay with you and your parents throughout the day if this is helpful.
Will I Be Awake for the Scope?
You will need to check with your own doctor to find out if you will be awake for the scope. Most of the time kids and teenagers receive medicine to go off to sleep for the scope. Kids wake up very soon after the scope has finished. Usually an intravenous (a tiny needle) is started in your hand or arm. Medicine is given into this needle by an anaesthetist (the doctor who is an expert in giving sleep medicine). Going off to sleep feels just like falling asleep on your own at nighttime. You will not feel any pain during the test. Some kids worry that they will wake up during the scope. The anaesthetist monitors you during the test and will give you more medicine if needed during the scope so you won't wake up until after the test. Many kids wake up after the test is finished and they ask if they have had the test yet.
Will the Scope Hurt?
Most of the time kids and teenagers are asleep during the scope and therefore will not feel any discomfort. After you wake up from the procedure some kids feel a bit of cramping (like a gas pain). This cramping usually only lasts a short while. Shortly after the procedure most kids are ready to drink and eat something. Most kids are ready to go home within two hours after the procedure. We expect you to be fully ready for school the next day.
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.
HNPCC & You
It's very important for families with possible Lynch Syndrome (HNPCC) to be evaluated by a genetic counsellor. A very thorough family history is crucial to evaluating a specific family. This usually involves obtaining medical reports from other family members who have had certain cancers. The genetics centre where your family is being evaluated will take care of this.
Colonoscope
It is unusual for patients with HNPCC to develop colorectal cancer in their teenage years. The average age of colorectal cancer in most families with HNPCC is in the early 40's. However, there have been some patients with HNPCC who have developed colorectal cancer in their teenage years. We take a careful family history to see if there are any young cases of cancer in the family. It is important to watch for any unusual bowel symptoms in young people at risk for having HNPCC. Unusual bowel symptoms are blood and/or mucus (looks like saliva) in the stool or on the toilet paper.
In general, we recommend beginning colonoscopy between the ages of 20-25, but we may start earlier if someone in the family has colorectal cancer or an adenomatous polyp younger than age 30-35.
For example, if a father had colorectal cancer at are 22, we recommend his children have a colonoscopy at age 12 (10 years younger than the earliest colorectal cancer diagnosis in the family). These guidelines are for someone who is feeling well, but if someone is having bowel problems we recommend following up with a doctor right away.
These screening guidelines have been developed by the Canadian Association of Gastroenterology and the Canadian Digestive Health Foundation (February 2004).
PJS & You
PJS (Peutz-Jeghers syndrome) is a condition where people can develop polyps in the intestine and freckling on the skin. The polyps in PJS grow mainly in the small bowel but can develop in the stomach and colon. The polyps look like a mushroom on a stalk.
Freckling occurs in most but not all people with PJS. The freckling occurs most often on the lips and inside of the mouth. You can ask your doctor about having freckles on your lips safely removed by a skin specialist. Sometimes, kids don't understand why the freckles develop, especially when there are lots of them on the lips. Removing them can make a big difference. Sometimes, freckling is seen on the hands, feet, and eyelids.
The polyps in PJS can cause problems in some people. Polyps can cause a blockage of the bowel. People usually have belly pain and may start vomiting. If you ever have these symptoms, you should be checked out right away by a doctor. Sometimes, polyps can bleed causing your red blood cell count (hemoglobin) to decrease. A low red blood cell count can make you feel tired. It is important to have a physical examination every year by your doctor.
Kids with PJS should be monitored by a specialist. Generally, colonoscopy is recommended when symptoms start or, if no symptoms occur, to begin in your teens. Generally, upper endoscopy and colonoscopy is recommended at least once every two years once started. In the future, tests such as capsule endoscopy will likely become available to check for polyps. This is a tiny capsule (the size of a large pill) which you can swallow. The capsule goes down into your stomach and through your intestines. The whole time the capsule is inside it is taking pictures of the lining of your intestines. This allows your doctor to review the film to check the number of polyps, to see where the polyps are, and to check the size of the polyps. This test is being studied in adults and kids
JP & You
We need to tell the difference between a condition with several juvenile polyps and a solitary juvenile polyp. Doctors do tests to find out if a patient has just one or two juvenile polyps or several juvenile polyps. Having one or two juvenile polyps usually doesn't cause any difficulties as you get older. In contrast, a patient with several juvenile polyps should be monitored by a specialist and will need further testing. This condition is called juvenile polyposis. This topic can be confusing for anyone. To understand your specific type of polyp condition, you should check with your doctor.
What is a Solitary Juvenile Polyp?
A solitary juvenile polyp is usually found in the colon and looks like a mushroom on a stalk.
You can see an example below of a solitary juvenile polyp in a five-year-old boy. This boy noticed rectal bleeding which was painless. Most children with a juvenile polyp may have painless rectal bleeding or the polyp coming through the rectum. Studies have not shown an increased risk in colon cancer in people with a solitary juvenile polyp.
What is Juvenile Polyposis?
Juvenile polyposis is a rare condition with multiple juvenile polyps in the gastrointestinal tract. The number of polyps needed to make the diagnosis of juvenile polyposis remains controversial. Most specialists agree that about 7 or more polyps are a reasonable cut-off. Doctors need to find out if a person has juvenile polyposis because patients have to be checked regularly.
Some patients with juvenile polyposis may be born with other problems, for example, heart problems.
What are the Symptoms of Juvenile Polyposis?
Children with juvenile polyposis usually develop rectal bleeding, anemia (a low red blood cell count), rectal prolapse, or protrusion of a polyp through the rectum. Rarely, juvenile polyposis can present during infancy with failure to gain weight, rectal bleeding, and diarrhea.
Do Polyps need to be removed?
If the polyps are causing problems such as bleeding they can usually be removed during colonoscopy. Most juvenile polyps can be removed by placing a snare (a wire) around the stalk of the polyp and pinching it tight.
To the right is an example of a juvenile polyp in the lower bowel of an eight-year-old girl with rectal bleeding. During colonoscopy, the wire was placed around the stalk and the polyp was safely removed. It does not hurt to have a polyp removed.
Is Juvenile Polyposis Inherited?
There is more than one form of juvenile polyposis. Sometimes more than one family member is affected. In other cases, there is just one family member with juvenile polyposis syndrome. In most cases there is a 50 per cent chance each child of an affected parent to have the disease gene.
Is there a Risk of Cancer?
Yes. Having juvenile polyposis does increase the chances of developing bowel cancer. Patients with juvenile polyposis may have a lifetime risk of colon cancer as high as 50 per cent.
How Should I be Monitored?
The screening recommendations include a colonoscopy beginning with symptoms or in early teens if no symptoms occur. The frequency of the colonoscopies is determined by the number of polyps but at least every three years once begun. Talk to your doctor to find out how often you should have colonoscopy.
Juvenile Polyposis and Kids
Some kids have of lots of polyps in their bowel. The polyps do not usually hurt but can cause some bleeding from the rectum. Tell your parents if you see bleeding on the toilet paper or in the toilet bowl. The best way to help keep you healthy is to check the polyps every two or three years. This is done with a colonoscope. Colonoscopy allows the doctor to see inside your bowel to make sure everything is fine.
Your Family Tree
Make YOUR FAMILY TREE
Your doctor or genetic counsellor will ask you and your parents about your family history. The genetic counsellor will also want to learn more about any illness in the family. This helps the doctors look after you in the best way possible. Let’s think of all the different names for people related to us:
- Brother, sister, twin, mother, father, grandmother, grandfather, uncle, aunt, cousin, niece, nephew.
The genetic counsellor draws a family “tree” to understand how everyone is related. The circles stand for girls and the squares stand for boys.
This is a sample tree created by one of our patients.
Exercise
Create your own family tree using our worksheet (20 KB pdf ) . You simply have to cut out the circles and squares and glue them on to a piece paper labelling your family members.
Resources - Books
Digestion
- What Happens to Your Food? Smith A. Usborne Publishing Ltd, London , UK , 1997
- I Know Where My Food Goes. Maynard J. Candlewick Press, Cambridge , MA , 1998
- The Organ Wise Guys. Lombardo M. Wellness Incorporated, Duluth , GA , 1996
Family Tree
- Me And My Family Tree. Sweeney J. Crown Publishers, Inc, New York , 1999
- The Family Tree Detective. Douglas A. Greey de Pencier Books Inc, Toronto , 1999
Feelings
- Liking Myself. Palmer P. Impact Publishers, San Luis Obispo , CA , 1977
- Let's Talk About Being Afraid. Johnston M. The Rozen Publishing Group, Inc, New York , 1998
- Why Am I Different? Simon N. Albert Whitman & Company, Morton Grove , IL , 1976
- Aarvy Aardvark Finds Hope. O'Toole D. Mountain Rainbow Publications, Burnsville , NC , 1988
- When Something Terrible Happens. Heegaard M. Woodland Press, Minneapolis , MN , 1991
- When Someone Has A Very Serious Illness. Heegaard M. Woodland Press, Minneapolis , MN , 1991
Fun Reading
- I Have To Go. Munsch R. Annick Press Ltd, Buffalo, NY, 1987
- Everyone Poops. Gomi T. Kane/Miller Book Publishers, Brooklyn, NY, 1993
Hospital
- Jessica's X-Ray. Zonta P. Firefly Books Ltd, Toronto, 2002
Loss
- When Someone Very Special Dies. Heegaard M. Woodland Press, Minneapolis, MN, 1988
- The Tenth Good Thing About Barney. Viorst J. Macmillan Publishing Company, New York, 1971
- Vanishing Cookies. Doing OK When A Parent Has Cancer. The Benjamin Family Foundation, Downsview, Canada, 1990
- Guardian Angels. Judd N. Harper Collins Publishers, Inc, New York, 2000
Your Body
- The Magic School Bus. Cole J. Scholastic Inc, New York, 1989
- Your Insides. Cole J. The Putnam & Grosset Group, New York, 1992
- Color Anatomy! Becker C. RGA Publishing Group, Inc, Los Angeles, CA, 1997
Your Genes
- Amazing Schemes Within Your Genes. Balkwill F, Rolph M. Harper Collins Publishers Ltd, Hammersmith, London , 1993 DNA Is Here To Stay. Balkwill F. Harper Collins Publishers Ltd, Hammersmith, London , 1992 Cells Are Us. Balkwill F. Carolrhoda Books Inc, Minneapolis , MN , 1993 Ingenious Genes. Baeuerle P A, Landa L. Barron's Educational Series,Inc, Hauppauge , NY, 1997
We want to hear from kids and families. You are the best people to inform us about what works and how we can improve Kids' Korner for you.
Please feel free to send your feedback so we can continue to improve Kids' Korner: fgicr.msh@sinaihealth.ca