Crohn’s Disease & Ulcerative Colitis: A Guide for Parents You recently learned that your What’s Inside? child has Crohn’s disease or ulcerative colitis. Now you’re IBD: The basics 2 taking an important step: Signs and symptoms 3 learning about these condi- Beyond the intestines 5 tions, how they’re treated, Who gets IBD? 6 and how your child can learn Causes of IBD 7 to live with IBD. Diagnosis 8 Treatment 10 The purpose of this brochure Prescription medication 10 Over-the-counter medication 12 is to start you on that educa- Medication changes and adherence 13 tional path—to inform you of Nutritional support therapy 14 some key points about Crohn’s Surgery 16 Complementary & alternative disease and ulcerative colitis, medicine 17 and what you may expect. Lifestyle modifications 17 Diet and nutrition 17 You won’t become an expert Vitamin and mineral overnight, but gradually you’ll supplementation 18 Vaccinations 19 learn more. And the more you Daily activities 19 School 20 know, the better you’ll be School accommodations 21 able to become an advocate Physical activities 24 for your child. Most important: Emotional health and social support 25 Transitioning to independence You’ll be an active member of and adult care 27 your child’s healthcare team. Living life 29 Hope for the future 31 Credits 31 About CCFA Inside back cover 1 Crohn’s disease and ulcerative colitis are the two most common types of inflammatory bowel IBD: The basics diseases. While these conditions produce simi- lar symptoms and use similar therapies, they It is important to note, first and are not the same. foremost, that inflammatory In ulcerative colitis, only the colon is affected; bowel diseases (IBD), specifi- of the multiple layers of the intestinal wall, only the innermost lining of the colon, the mucosa, cally Crohn’s disease and becomes inflamed. Ulcerative colitis also spreads proximally, meaning it starts from the ulcerative colitis, are chronic rectum and can spread continuously to the rest but treatable conditions. of the large intestine (colon). Doctors and scientists are working hard to find Crohn’s disease, on the other hand, may affect the causes of and the cure for IBD. Despite the any part of the gastrointestinal (GI) tract, from challenges of living with a chronic disease, your the lips to the anus. Unlike ulcerative colitis, child can have a normal, happy, productive life. Crohn’s can skip large segments of bowel While there is not yet a cure for these diseases, before reappearing in others. The areas most appropriate therapy can control the chronic often affected, however, are the lower part inflammation that is a hallmark of IBD. This will of the small intestine (ileum) and the large help achieve long-term treatment goals, includ- intestine (colon). Also, in Crohn’s patients, ing elimination of chronic gastrointestinal the inflammation does not stop at the mucosa symptoms, restoration of growth, and a normal (tissue lining) and may burrow through the quality of life. entire thickness of the bowel wall. Signs and symptoms THE GASTROINTESTINAL (GI) TRACT Despite the differences 1 1 Oral Cavity between Crohn’s disease 2 2 Esophagus and ulcerative colitis, both 3 Liver 4 Stomach cause similar symptoms 3 5 Large Intestine/Colon when active—all brought 4 6 Small Intestine on by chronic inflammation. 7 Terminal Ileum 5 6 8 Rectum 7 Patients may have one or more symptoms, 9 Anus including: 8 9 persistent diarrhea Figure 1 abdominal pain and/or cramps 2 3 fecal urgency intestinal bleeding Beyond the intestines fever In addition to having symptoms weight loss in the GI tract, some people may experience a variety of While these symptoms are the same in children and adults, children may be affected by a delay symptoms in other parts of in growth and sexual maturation. In fact, a sig- nificant number of pediatric IBD patients are the body associated with IBD. diagnosed after reporting growth delays. This primarily affects Crohn’s patients because of Signs and symptoms of the disease may be the direct effects on bone growth and decreased evident in: absorption of nutrients. However, it can affect all pediatric IBD patients if abdominal pain or eyes (redness, pain, and itchiness) other symptoms result in reduced appetite. mouth (sores) It is important to understand that these symp- toms can vary significantly from patient to joints (swelling and pain) patient and do not have to be persistent. Such symptoms are only present when IBD is active skin (tender bumps, painful ulcerations, and can be eliminated by inducing and main- and other sores/rashes) taining remission and avoiding flare-ups (active symptoms) of the disease. Symptoms may bones (osteoporosis) appear suddenly and severely and may seem to be triggered by stress or a viral or bacterial kidney (stones) illness; they may also build slowly over time. liver (primary sclerosing cholangitis, hepatitis, You can learn more about signs and symptoms and cirrhosis)—a rare development through the following brochures offered online at www.ccfa.org: All of these are known as extraintestinal manifes- tations of IBD because they occur outside of the Living with Crohn’s Disease intestine. In some people, these actually may be the first signs of Crohn’s disease, appearing Living with Ulcerative Colitis even years before the bowel symptoms. In oth- ers, they may occur right before a flare-up of Managing Flares and Other IBD Symptoms the disease. 4 5 Who gets IBD? Causes of IBD Approximately 1.6 million No one knows for sure what Americans have either Crohn’s causes Crohn’s disease or disease or ulcerative colitis. ulcerative colitis, but experts That number is almost evenly split between believe there may be several the two conditions. Here are some quick facts factors that work together and figures: to lead to the development More than 1.6 million Americans have IBD. of the diseases, including: On average, people are more frequently diagnosed with Crohn’s disease or ulcerative Genes—Studies have shown that 5% to 20% colitis between the ages of 15 and 35, of affected individuals may have a first-degree although the disease can occur at any age. relative (i.e., parent/child, sibling) with one of these diseases. Your genes clearly play a role, Males and females appear to be equally although no specific pattern of inheritance has affected. yet been identified. This means that right now there is no way to predict which, if any, family While IBD can affect people from any ethnic members may develop IBD. background, Caucasians develop it more than other groups. Environmental elements—Viruses, bacteria, and other factors have been studied with no conclusive results. Researchers are now focusing on microscopic elements. Inappropriate immune reactions—Scientists continue to study whether a glitch in patients’ immune systems—perhaps launched by an environmental prompt—may result in the body attacking itself. While researchers continue to study possible causes, some have been ruled out, including tension, anxiety, personality traits, or dietary factors. Also, the diseases are not contagious. 6 7 Endoscopy is a test that involves inserting a lighted viewing tube through either the Diagnosis mouth into the upper intestine (upper en- doscopy) or through the anus into the colon Your child’s diagnosis of (colonoscopy). The physician performing the exam can also remove tiny pieces of tissue Crohn’s disease or ulcerative (biopsies) from the intestines, which are colitis likely occurred follow- later examined for microscopic signs of the diseases. During the endoscopy, your child’s ing a few tests. doctor may also insert a video capsule, which takes pictures of the inside of the small In addition to a thorough medical history and intestine. These pictures can show areas of physical examination, children may undergo soreness, ulceration, or bleeding that may a combination of blood tests, barium x-rays, not be detectable by other methods. Generally, magnetic resonance imaging (MRI), and these tests are performed on children who endoscopy of the upper and lower GI tract. In are sedated. A new form of endoscopy, called general, physicians will begin by prescribing the pill endoscopy, does not involve anesthe- the least invasive tests, progressing to more sia. Instead, a patient swallows a small pill- invasive testing until a diagnosis is obtained. shaped camera, which takes pictures as it This is especially true in pediatric patients. travels through the intestines; the images are captured on a device worn by the child. Blood tests are done to check for a low red The camera pill is excreted in the child’s stool. blood cell count (anemia) or high white blood cell count (inflammation). Other blood tests Crohn’s disease and ulcerative colitis may look may be performed to look for evidence of like other conditions. One example of this is inflammation in the intestine and elsewhere. irritable bowel syndrome, or IBS. IBS shares More recently, various antibody tests have many symptoms of IBD, including abdominal been discovered that can show the altered GI pain and diarrhea. However, IBS is a functional immune process in some people with IBD. bowel disorder, meaning the muscles of the intestines react improperly, either moving the Barium x-rays and MRI include the upper GI bowel contents too quickly or too slowly. IBS and small bowel series, which helps to visu- does not involve inflammation, however. alize areas of the intestines that are out of Because there are no physical signs of IBS, reach of endoscopies (see next bullet). (The it is usually diagnosed after ruling out other lower GI series, or barium enema, has been conditions, including Crohn’s and colitis.