A Guide For Children & Teenagers to Crohn's Disease & Ulcerative Colitis.
Crohn's disease and ulcerative colitis are diseases of the gastrointestinal (GI) tract. The GI tract works like this: when you eat, food goes down into your stomach. Food leaves the stomach and goes into the small then large intestines. In the small intestine, which is a long, winding tube, food is broken down and absorbed by your body. What is left comes out of your bottom as a stool or bowel movement.
Crohn's disease is an illness in which the wall of the intestine becomes sore, inflamed, and swollen. This causes stomachaches, diarrhea or watery stools, fever, weight loss, and blood in your stools. In Crohn's disease, any part of your GI tract, from your mouth to your bottom, may have inflammation, but the disease most commonly occurs in the last part of the small intestine (called the ileum) or the upper part of the large intestine (called the colon).
In ulcerative colitis, only the large intestine is red and swollen. The disease also causes stomach pain and diarrhea, often containing blood. Unlike Crohn's disease, ulcerative colitis does not affect other parts of the GI tract.
Because Crohn's disease and ulcerative colitis inflame the intestines and cause similar symptoms, the two diseases are grouped together under the name inflammatory bowel disease, abbreviated as IBD.
What causes IBD?
We do not know. Most people who study IBD, however, think that your immune system, which normally protects you against disease, may be overworking in the intestine. Instead of protecting your intestine from germs that can make you sick, the immune system attacks your intestine, causing inflammation. We do not know what makes your immune system work too hard to cause IBD, but we do know that IBD is not contagious. No one gave IBD to you, and you cannot give it to anyone else. IBD is not caused by "nerves" or by any kind of food. Nothing that you or your parents ever did caused you to have IBD, so there is absolutely no reason to feel bad or guilty about it.
Does IBD affect only the GI tract?
Symptoms may also occur outside the GI tract. These include arthritis, mouth ulcers, skin rashes, and eye problems. Arthritis is joint swelling and stiffness. The knees and ankles are most often involved. Swelling usually lasts a few weeks and then disappears with no permanent damage. Controlling the intestinal inflammation will usually fix the joint problems. Small mouth ulcers are like canker sores inside the mouth. They are present when the bowel is actively inflamed, but they disappear when the inflammation is treated. Sometimes people get skin rashes or painful, reddish bumps on their legs. These get better with treatment of the intestinal inflammation. Eye problems include redness of the eyes, eye pain, or sensitivity to light. These, too, improve with treatment.
Can IBD ever be cured?
We do not talk about a cure for Crohn's disease or ulcerative colitis, because no one has invented one yet. As we said, we do not even know what causes IBD. Even though we have no cure, there is medicine and other things we can do to make you feel better, let you go back to school, and let you do what you want to do. In some persons with severe ulcerative colitis, the disease can be "cured" by removing the colon. You may feel better knowing that many people throughout North America (and the rest of the world) are doing research to find a cure for IBD.
What medicines will I have to take?
Most people take medicine that contains 5-ASA, which is something like aspirin. People may also take prednisone, which is a steroid, or 5-ASA and prednisone at the same time. Some examples of 5-ASA drugs include sulfasalazine (brand name Azulfidine[R]), Asacol[R]), Dipentum[R], Pentasa[R], and Rowasa[R]. These medicines can be pills, but most of them can be turned into liquids if you do not like to swallow pills. Sometimes, the medicines are put into your bottom as solid pellets called suppositories. They can also be mixed in water before going into your bottom; this is called an enema. Sometimes, you have to go into the hospital so that the medicine can be given through a small tube in your vein, called an/V or intravenous tube. People need IV medicine for IBD when the medicines taken by mouth or in your bottom are not strong enough. Other medicines include antibiotics and immunosuppressives, which are best discussed by your doctor.
Do the medicines do anything else to me besides making my intestines heal?
Medicines sometimes do things we do not like; these are called s/de effects. Medicine for IBD can also give you an upset stomach, make your skin break out in rashes, and give you headaches. Prednisone may make you eat more, make your face swollen, slow your growth, and make you feel moody and restless, especially when given in high doses for long periods. You can help control swelling by not adding salt to your foods and by not eating foods high in salt, such as potato chips, pretzels, pizza, and french fries. As the dosage of prednisone is reduced, however, these side effects will go away. You should tell your parents or doctor if you experience side effects. Blood tests will be done to find out if your medicine is working right.
Will I need to eat a special diet?
Because it is so important to get enough calories for good growth, your doctor will probably let you eat anything you want to (within reason). But, be smart. If any food makes you feel worse, do not eat it. Sometimes raw foods, like salads, or hard foods, like nuts or popcorn, can cause trouble if your intestine happens to be particularly swollen and narrowed or if your diarrhea has been worse recently.
What if I feel too sick to eat?
If you are having a lot of stomach pain, diarrhea, or bleeding, and medicine is not helping enough, you may not want to eat much. If you do not want regular foods, there are special liquids that you can drink. These often contain everything your body needs and come in many flavors, like vanilla and chocolate. Sometimes, a thin soft tube can be passed through your nose into your stomach, and liquid food is put in through the tube (called a nasogastric or NG tube). This can be done while you are asleep at night. Other times, you may be sick enough to be in the hospital. There, food may be given to you in liquid going through an IV. Giving food this way is called total parenteral nutrition or TPN. Not everyone needs these special kinds of liquid diets. Your doctor knows that eating more food will help your body fight the disease better.
Will IBD make me grow more slowly?
It might, for a while. If you became sick as a young child, you may now be shorter than others in your class. This may be because IBD slows down your growth or makes you eat less food. If you do not eat enough, you will not grow as fast as you could.
Will I have to take more tests?
You probably already know what a barium x-ray is. Barium is a pink or white chalky liquid, which you drink, that makes your intestines show up on the x-ray. A barium enema means that the barium is put in through a tube that is put into your bottom. Barium x-rays let your doctor see how sore your intestine is and whether it is getting better with medicine. The other way to see is by doing endoscopy. An endoscope is a bendable tube with a bright light and a tiny TV camera at its tip that allows the doctor to see the inside lining of your intestine. The endoscope may go down your throat or into your bottom. Usually, the endoscopy is not done while you are awake. Instead, you get medicine through an IV or a gas mask on your face to make you sleepy. That way, you will not be scared during the test, and you will have a hard time remembering it. For the endoscopy through your mouth, you must have an empty stomach, which means skipping a meal. For the barium enema or the endoscope through your bottom, stools in your colon need to be cleaned out. This means drinking a lot of clear liquids and eating jello and popsicles for a day or two before the test, and taking laxatives for a few days or drinking a special solution to "flush out" your intestines the night before the test. Barium x-rays and endoscopies are not fun. But they may be the only way your doctor can tell which part of your intestine is sore and what the best medicine is to make it better.
Will I have to have an operation?
Surgery is not usually the first way to make you get better Your doctor may decide you need surgery only if the medicines prescribed for you do not work. That is why it is so important for you to take all your medicine without missing any. If you aren't growing well enough could be another reason why your doctor might think about operating. For some young people, having surgery is the best way to start growing again.
If surgery becomes necessary for ulcerative colitis, all or most of the large intestine is removed. While healing is going on inside, your intestine may temporarily drain stool through an opening in the front next to your belly button. This is called a stoma. The liquid stool is caught in a disposable bag that sticks to you with a special glue. Having a stoma sounds bad, but people do get used to it. Usually, stomas are just for a short time. After you have healed up inside, you may be reconnected on the inside with more surgery, so you can start to have bowel movements out of your bottom again.
In Crohn's disease, the surgeon usually removes the inflamed part of the intestine and sews the healthy ends of bowel together This is not a cure for Crohn's disease because the disease often comes back in a different part of the intestine after the operation.
What can I do to make myself feel better?
Some people who get sick think the doctors and nurses will make them well. IBD is different. If you have IBD, you will get well only if you work with your doctors and nurses. These are the things you will need to do: (1) Take all your medicine and tell your mom or dad if you think the medicine is making you worse not better; (2) Pay attention to how much pain you're having and what your bowel movements are like, how watery they are, and how much blood they have. Remember, everyone knows how hard it is to take medicine all the time. But, if you take your medicine, you will feel better.
Is there any way I can get used to having IBD?
IBD will be with you off and on for many years. You might feel that you spend too much time thinking about having to take medicine and about bowel movements. The medicine may make you feel and look different. There are times when you may be having even more pain and stools. You want your mom and dad to take care of you. But, once you start feeling better, you want to take care of yourself again.
Sometimes, it helps to tell a friend about your feelings. That way, someone you like understands what you are going through. Your school nurse and teachers may also be able to understand if they know more about IBD. You, as well as your parents, can tell them how you feel. You may be able to get permission to leave the classroom to use the bathroom without asking every time. People with IBD often find that keeping a calendar makes it easier to remember their medicine. If you do things like that, you are taking control over the IBD and your own body.
Can I go to school and take part in sports?
You should do anything you feel like doing. You can play in sports if you feel well enough and if your doctor permits it. On days when you do not feel well, you should not feel guilty about staying home until you feel better. Maybe your teachers and doctor can work out something special just for you.
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|Publication:||Pamphlet by: The Crohn's & Colitis Foundation of America (CCFA)|
|Article Type:||Topic Overview|
|Date:||Jan 1, 1997|
|Previous Article:||Questions & answers about Crohn's disease & ulcerative colitis.|