AUSTRALIAN

ASSOCIATION Inc.

COPING WITH CROHN'S DISEASE AND ULCERATIVE COLITIS

INFORMATION FOR CHILDREN AND TEENAGERS

WHAT IS CROHN'S DISEASE?

Crohn's disease is a condition in which the wall of the intestine becomes sore, inflamed, and swollen. This causes abdominal pain, diarrhoea, fever, and loss of weight. Some people even have pains in their knees, ankles, and other joints. Crohn's disease is called ileitis when it is in the ileum, which is the last part of your small intestine. Crohn's disease of the large intestine, or colon, is called Crohn's colitis.

Ileocolitis is Crohn's disease of both small and large intestines. Crohn's disease sometimes involves other parts of the digestive system too, such as the duodenum, the mouth, and the anus.

WHAT IS ULCERATIVE COLITIS?

Ulcerative colitis causes sores to form in the inner lining of the large intestine. There is diarrhoea, often mixed with blood, abdominal pains, and occasionally pains in the joints.

Because both ulcerative colitis and Crohn's disease inflame the intestines and cause some of the same symptoms, your doctor may have used the term inflammatory bowel disease, or IBD, to describe them.

WHAT CAUSES IBD?

We don't know the answer to this. Some researchers think that viruses or bacteria may be causing the inflammation. Others think that the system which normally defends the body against disease actually may be damaging the intestine and causing inflammation. Most doctors agree that IBD is not "contagious", and is not caused by "nerves" or by any kind of food. There is nothing that you or your parents have done to cause you to have this disease, so there is absolutely no reason to feel guilty.

CAN THESE DISEASES EVER BE CURED?

We don't talk about a cure for these diseases because we don't know the cause. Both Crohn's disease and ulcerative colitis are diseases you have to get used to. Fortunately, we do have some drugs which can help control symptoms and can allow long periods of good health. Some people have severe symptoms and complications and may still respond completely to treatment.

WHAT MEDICINES WILL I HAVE TO TAKE?

Most people with IBD take either sulfasalazine or prednisone (corticosteroids), or both at the same time. Both medicines help reduce the inflammation in the body caused by IBD. Sometimes strong antibiotics are used. Newer drugs, called immunosuppresives, are occasionally used to help control disease. Paediatricians are hesitant to use these drugs for their patients since their long-term effects are unknown. Along with your other medicines, your doctor may prescribe drugs to help control diarrhoea, medications to reduce abdominal pain, and supplemental vitamins and minerals.

DO THE MEDICINES HAVE ANY SIDE EFFECTS?

All medications may have some side effects. Sulfasalazine sometimes causes nausea, stomach upset, headaches and skin rashes. These side effects may go away after a time. If they don't your doctor will try to change the dose so that your body gets used to the drug. If this does not help, your doctor may have to stop the drug and try something else.

While it is helping to control your symptoms, prednisone will probably also increase your appetite, cause you to gain weight, and make you feel moody and restless. Your face will probably become rounder than you would like (doctors call this "facial mooning"), but you can help control this by cutting out foods that are high in salt (potato chips, pizza, French fries, for example). You may also get some acne. As the dose of prednisone is reduced, these side effects will go away. You will probably need to take prednisone only when your symptoms are at their worst.

WILL I HAVE TO HAVE MORE TESTS?

You have probably had x-ray examinations using barium, and you might have had a sigmoidoscopy or colonoscopy - tests using a tube with a light inserted through the rectum into the bowel. These tests are certainly not pleasant. But they are the only way your doctor can tell which part of your intestine is inflamed, and how best to treat it. It may be necessary to have some of these tests repeated from time to time, so the doctor can tell if you are responding to treatment.

WILL THE DISEASE MAKE ME GROW MORE SLOWLY?

It might, for a while. If you become sick as a young child, you may now be shorter than others in your class. Scientists don't really know why this happens to young people with IBD, but they do know that growth hormone levels are normal. They also know that young people with IBD - especially Crohn's disease - eat less food than their bodies need, either because they are not hungry or because eating causes the pain and diarrhoea to get worse. And eating less can definitely affect growth.

WILL I NEED TO EAT A SPECIAL DIET?

Since it is important to get enough calories for good growth, your doctor will probably let you eat almost anything you feel like eating (within reason!) This includes foods like hamburgers, French fries, pizza and soda. But be smart. If any food makes you feel worse, don't eat it. Sometimes raw foods like salads can cause trouble if your intestine is narrowed, or if your diarrhoea is active. And remember that the salt in most junk food will make the rounding of your face worse if you are taking prednisone.

WHAT IF I AM TOO SICK TO EAT?

If you have no appetite for regular foods, there are liquid supplements which you can drink which contain everything your body needs. They come in many flavours, including vanilla and chocolate. If you need extra help with nutrition, or if you are sick enough to be in hospital, your "food" may be given to you through a tube placed into a vein, or through a thin, soft tube passed from your nose into your stomach. These kinds of feedings take some getting used to. Doctors know that improving your nutrition will help your body to fight the disease.

WILL I NEED TO HAVE AN OPERATION?

You might. But your doctor will decide if you need surgery only if the medications prescribed for you don't work, or if you have complications. If you aren't growing properly, that could be another reason why your doctor might be thinking about operating. Sometimes, young people begin to catch up on their growth after the diseased part of their intestine is removed.

If surgery is necessary for ulcerative colitis, the surgeon removes the whole large intestine (colectomy), and the bowel waste then empties into an appliance (a disposable bag) worn on the lower front part of the body. This new opening is called an ileostomy. While this sounds unpleasant, almost all patients adjust well and are able to lead completely normal lives. You should know that newer operations have been developed in which a special "pouch" is created inside the body to collect waste. This makes the wearing of an appliance unnecessary. Once the colon is removed in ulcerative colitis, the disease is cured.

In Crohn's disease, the surgeon usually removes the inflamed part of the intestine and sews the healthy ends together. This is called a resection. Even though you feel much better after a resection, this is not a cure for Crohn's disease, since the disease often comes back in a different part of the intestine after the operation.

IS IT NORMAL TO GET DEPRESSED WHEN I AM SICK?

Yes, it is quite normal to get depressed by painful and embarrassing symptoms, and by drugs which can change your appearance. Sometimes you may feel that there isn't anyone who really understands how badly you feel. You should talk these feelings over with your parents and with your doctor. They may be able to help you, or to find someone who can. It can be helpful, too, to talk to someone your age who has the same disease.

SHOULD I TELL PEOPLE ABOUT MY DISEASE?

Only if you want to. You should be the one to decide how much you want to talk about it. Children and even teenagers can be insensitive, even when they don't mean to be, about things that are strange or unfamiliar to them.

If you are absent from school a lot, or if you have to go into the hospital, you or a parent should have a talk with your teachers to explain the situation. Try using some of this information if this is difficult. Letting the school know what to expect is not making excuses for yourself. It's just a better way to handle the situation.

CAN I GO TO SCHOOL AND PARTICIPATE IN SPORTS?

You should be as active as you feel like being. There is no reason why you can't go to school or play most sports if you feel well enough, and if your doctor permits it. On days when your symptoms get to be too much to handle in school, you shouldn't feel guilty about staying home. If you can attend school, you may find that some strenuous sports will make you tire quickly, or make your abdominal or joint pains worse. See if your teachers and your doctor can work out a modified gym program for you.

On days when diarrhoea is a real problem, knowing the locations of all the bathrooms in your school is a must. If it is not too embarrassing, you might work out an arrangement with your teachers, allowing you to leave the classroom if you need to.