CROHN S DISEASE YOUR Treatment ide Gu DIARY CD What you need to know about your anti-tnf treatment 075_Pediatric Crohns_Brch_Em5.indd 1 4/4/11 5:26:42 PM
SAM 416-123-4567 Hi there! Life can be complicated and confusing sometimes. There s a lot you need to know. On top of all the regular stuff, being told that you have Crohn s disease can seem like too much to handle. But don t worry! You re not alone. In fact, did you know that in Canada, nearly 2,900 kids 18 years old and younger have Crohn s disease? Some of them probably feel the same way you do right now. But there are things you can do right now that may make it a little easier to deal with. You can start by reading this booklet, either on your own or with your parents. It will help you understand more about Crohn s disease and your anti-tnf treatment. It will explain some words that you may hear your parents, your nurse and your doctor use. It may even help you feel less worried about some of the things you re going through. If you find that you still have questions after reading this booklet, remember that you can always talk to your nurse or doctor. And remember, your friends and family are always there to help and support you too! Table of Contents Crohn s Disease What is Crohn s disease? 4 Where did my Crohn s disease come from? 5 Where does Crohn s disease happen? 6 What does Crohn s disease feel like? 7 What kinds of treatments are out there? 8 Anti-TNF Treatment Why did my doctor suggest an anti-tnf? 10 How do anti-tnfs work? 10 How is treatment given? 10 What do I need to do before my first treatment? 11 How often are treatments? 11 What happens during a treatment? 12 Can I take an anti-tnf with my other medications? 13 Does my treatment have any side effects? 13 Who should not take anti-tnfs? 13 What else do I need to know about my treatment? 14 I still have questions 15 Glossary 17 YOUR Treatment Gu ide GI075_Pediatric Crohns_Brch_Em5.indd 2-3 4/4/11 5:26:48 PM
?? What is Crohn s disease? DIARY CROHN S DISEASE? Crohn s disease (CD) is a type of inflammatory bowel disease (called IBD for short). CD is a condition that causes inflammation in your gastrointestinal tract (or GI tract). Inflammation is just a fancy word that describes when parts of your body get red, swollen and painful. When you have CD, all of the body parts that deal with processing what you eat from the time food goes into your mouth to the time it comes out of the other end can become inflamed. The other main type of IBD is called ulcerative colitis (UC). CD and UC are very close to one another, but they are not exactly the same. Your doctor will know how to tell the difference, and will suggest treatments based on which IBD you have. You can get either type of IBD at any age. Many kids your age have it. There are over 4,400 kids under 18 years old in Canada with IBD right now. There s a third type of IBD called IBD-U. The U stands for unclassified. That means that it s too difficult to say for sure whether it s CD or UC. Sometimes IBD-U is called indeterminate colitis because your doctor can t determine which type it is. Where did my Crohn s disease come from? Even though there have been a lot of scientific studies done in the past few years, researchers don t yet know what causes CD. We do know that it can run in families. You re more likely to get CD if you have a brother or sister who has it (and even MORE likely if that brother or sister is your identical twin). Anyone can get CD at any age, but in terms of kids and teens, it happens slightly more often in boys than in girls. Right now, we think CD is caused by a combination of three things: 1. Genetics: You ve probably learned about genes in biology class. Some people or groups of people may have genes in their bodies that increase their chances of getting CD in certain circumstances. 2. Environment: Your environment can be anything your body comes in contact with. Infections and food are the most common types of environmental triggers that may contribute to CD, but there may be others. 3. Immune system: Our immune system protects us from harmful bacteria and viruses, but in some people, it can sometimes cause inflammation in the body (such as in the GI tract). my family my goofy brother 4 5 GI075_Pediatric Crohns_Brch_Em5.indd 4-5 4/4/11 5:26:52 PM
Where does Crohn s disease happen? CD can occur anywhere from gum to bum. Compare the pictures below to see which parts of your body can have CD. In CD, inflammation is patchy. This means that parts of your GI tract can be healthy while other parts are inflamed. Knowing where you have inflammation can help you and your doctor understand your symptoms and choose the right treatment. Stomach Large intestine What does Crohn s disease feel like? People with CD can feel a bunch of different symptoms, like stomach pain, vomiting, loss of appetite and even fevers. They can also have diarrhea, weight loss, poor growth, mouth ulcers or swollen lips. Some people may have just a few of these while other people may experience more of them. Some people may have inflammation in the bum (or anus), which could cause fissures (fish-urs) and fistulae (fist-u-lay). Yes, those are crazy-sounding words! Fissures are like small tears inside the anus. Fistulae are like little tunnels that connect your bowel to other areas of your body. If a fistula forms between your bowel and the skin around the anus, you may have some fluid leaking from time to time. This might make it uncomfortable to sit down. A fistula may also connect to tissues around the anus, which can become infected. This is called an abscess, and it can also be painful. Small intestine Ileum Rectum Large intestine Fistula Anus hmm! A healthy GI tract The GI tract of a person with CD CD is a chronic condition. That means that it s for life! Although there s currently no cure, there are a lot of treatment options. When you find one that helps keep your CD in control, you can be in remission (that means symptom-free) for a long time! 6 7 GI075_Pediatric Crohns_Brch_Em5.indd 6-7 4/4/11 5:27:01 PM
What kinds of treatments are out there? There are five classes of medicines used to treat the symptoms of CD No medicine has been invented that cures CD The medicines can be pills, liquids, intravenous (given in a vein), suppositories or enemas The medicines help you go into remission Check with your health care professional or ask your parents more about your medicine 6. 5-aminosalicylic Acid (5-ASA): Used for milder forms of CD, 5-ASA decreases inflammation in the intestinal tract. It can be taken orally (by mouth) or rectally. 5. Immunomodulators: Used for long-term treatment, these drugs work by suppressing the immune system to help reduce inflammation. Immunomodulators may also help patients stay in remission. They are not intended for acute flares. Immunomodulators are given orally or by injection. 4. Steroids: notes These drugs are used for moderate-to-severe CD for a short period of time to help decrease the amount of inflammation in your body. They can be taken orally, intravenously or rectally. 3. Antibiotics: Antibiotics are generally effective for CD patients with an abscess, a fistula or an infection. They can be given orally or intravenously. 2. Enteral Nutrition: Enteral nutrition, used for short- or long-term treatment, can help rehabilitate patients who are malnourished as a result of their CD. It is also helpful for those who have small bowel disease. It can be given orally or by a nasogastric tube. 1. Biologics: These drugs inhibit specific substances in the body to reduce inflammation. They are commonly administered intravenously. Anti-TNFs are a type of biologic drug. 8 9 GI075_Pediatric Crohns_Brch_Em5.indd 8-9 4/4/11 5:27:07 PM
Why did my doctor suggest an anti-tnf? Your doctor suggested an anti-tnf because you haven t responded well to other medications you ve tried. Your doctor may have also recommended an anti-tnf to help you to stop using steroids. Long-term steroid use may have negative effects on your growth in the long run. How do anti-tnfs work? There are molecules in our bodies called cytokines. There are different types of cytokines in the body: some can cause inflammation and some prevent inflammation. People with CD have too much of one of the types that cause inflammation. It s called tumour necrosis factor-alpha, or just TNF-α for short. Anti-TNFs act like a sponge that absorbs all the extra TNF-α in your body and stops it from causing inflammation. What do I need to do before my first treatment? Please make sure to have your parents read the next few pages with you. There s some important information you ll want them to know about before you start your treatment. Actually, it might be a good idea to share this whole booklet with your parents after you read it, or you can read it all together. Before your first dose: Your health care provider will first need to rule out tuberculosis (TB). You will have to have an X-ray and a TB test before getting your first dose. Your parents will also be asked about whether you ve had chickenpox or hepatitis B and what immunizations you ve had. On a regular basis: Your health care provider will request that you have some blood tests done a few days before (or on the day of) your treatment. This is to ensure that your body is ready for your next treatment. How is treatment given? An anti-tnf is given either in the hospital (at least for the first three doses) or at infusion centres. Anti-TNFs are given through intravenous (IV) infusion. This means that anti-tnfs are delivered directly into your bloodstream through a needle placed in a vein in your arm. Treatments are set up and carefully supervised by health care professionals who have received special training. How often are treatments? The first three doses, called induction doses, are at Week 0, Week 2 and Week 6 After that, treatments will generally be every 8 weeks It is important that your treatments be given regularly YOUR Treatment ide Gu 10 11 GI075_Pediatric Crohns_Brch_Em5.indd 10-11 4/4/11 5:27:09 PM
What happens during a treatment? 1. When you arrive at the clinic, your treatment will already be waiting for you. Since the amount of anti-tnf you get is based on your weight, the nurse will have to weigh you and adjust the dose. Your nurse will also check your blood pressure, heart rate and temperature. In some cases, for example, in a hospital setting, a blood sample will be taken. 2. When you are comfortable, a nurse will place a needle in your arm. You will feel a slight pinching, but this only lasts a few seconds. The nurse will switch the needle with a catheter so that you can begin your treatment. A medicine called hydrocortisone is given just before your treatment to help prevent any possible allergic reactions you may have to the infusion. 3. Throughout your treatment, your nurse will be around to check on you frequently. Clinics are comfortable. They either have beds or reclining chairs where you can relax while you get your treatment. Some centres have IV poles that permit you to walk around if you wish, while other centres require you to remain seated throughout the process. Even if you have to stay seated, many centres have free wireless Internet and DVD access. You re always free to bring a book, a movie or your ipod the choice is yours! my nurse Alessia Can I take an anti-tnf with my other medications? In several scientific studies, patients have been known to take other medications with their anti-tnf, including antibiotics, steroids and other medicines like azathioprine or methotrexate. You may need to be on both antibiotics and an anti-tnf, or shortterm steroids and an anti-tnf. This has been found to be safe when done with close monitoring by your health care provider. Does my treatment have any side effects? Like all medicines, it s important to understand that you may have some side effects while taking anti-tnfs. Common ones you may feel are shortness of breath, rash, itchiness and headache. Other side effects that are less common are stomach pain, back pain, coughing, diarrhea, dizziness, fatigue, pain, upper respiratory infections and urinary tract infections. Some side effects may be mild, but others may be serious and could require treatment. Who should not take anti-tnfs? Anyone with a severe infection in the bloodstream (called sepsis), an abscess or tuberculosis (TB) Anyone with a congenital heart disease Anyone with a known allergy to sucrose, sodium phosphate and polysorbate 80 all ingredients found in an anti-tnf treatment 12 13 GI075_Pediatric Crohns_Brch_Em5.indd 12-13 4/4/11 5:27:13 PM
What else do I need to know about my treatment? The following is a list of safety concerns you and your parents need to know about before you start your treatment. Please make sure that your parents read and understand this section. They may even want to discuss it with you and your doctor or nurse. Allergic reactions: There is a small chance you could have an allergic reaction (rash, itch, breathing difficulties) when you begin your treatment. If this happens, rest assured the staff is well trained to manage the situation. Often, patients who have an infusion reaction may only have it once (and not have any difficulties with future infusions). Other patients may have more severe reactions. Some patients may need to stop using anti-tnfs permanently if the allergic reaction is very severe. Risk of infection: While on anti-tnfs, you are at a higher risk of developing an infection. If you develop a fever, please tell your parents right away and ask them to tell your doctor. If you have a history of tuberculosis (TB) you may re-develop it while on anti-tnfs. Your doctor will assess your risk before you start this medication. You will need to have a blood test and a chest X-ray to ensure that you have no signs of TB before starting anti-tnfs. Chickenpox exposure: Tell your parents to contact your doctor if you re on an anti-tnf and have been exposed to chickenpox. If you re not already immune to chickenpox, you may need to take medicine to reduce your risk of developing it. If you develop chickenpox, make sure your parents contact your doctor immediately. Vaccinations: Live vaccines (vaccines that contain live virus particles) are not allowed when you are taking anti-tnfs. These types of vaccines include those for varicella (chickenpox) and MMR (measles, mumps, rubella), as well as oral typhoid, oral polio, intranasal influenza, tuberculosis BCG (Bacillus Calmette-Guérin) and yellow fever. This is information your parents will need to know about! (Parents, if your child requires any of these, speak to your health care provider and they can work out a schedule for getting vaccinated without missing the next infusion.) Other vaccinations, such as DTP (diphtheria, tetanus, pertussis), injectable influenza, pneumococcal, hepatitis A and/or B, meningococcal and HPV vaccines, are safe as they are inactivated or non-live vaccines. Lymphoma: There have been a few reports of a very rare form of lymphoma (called hepatosplenic T-cell lymphoma ) in patients receiving both azathioprine and anti-tnfs together. However, the numbers are so small that the benefits of treatment outweigh the risks. To date, there have been no cases of this type of lymphoma in patients receiving an anti-tnf alone. I still have questions Do I need to fast or eat a special diet before my treatment? No, there are no special preparations. Can my parents leave me by myself at the infusion centre or hospital clinic? No. In case something happens, a grown-up guardian needs to be present to make important decisions.??? 14 15 GI075_Pediatric Crohns_Brch_Em5.indd 14-15 4/4/11 5:27:15 PM
Do I need to stay on my other medicines? Your health care provider will determine exactly which medications you need to take and which ones you can discontinue. Make sure your parents know what you should be taking. I hear some kids stop after a few doses Anti-TNFs don t work for some people. Your doctor or nurse will evaluate your response to your treatment after three doses. If it works for you, you will be advised to keep going. If not, your health care professional will discuss other options with you. There s a lot of paperwork involved! Is there someone who can help me? Clinic coordinators are always available to help you and your parents handle all of the paperwork involved with your treatment. Glossary Abscess: a pocket of pus in the body caused by infection Aminosalicylates: also known as mesalamine or 5-ASA, a drug used to treat an inflamed intestine with few, if any, side effects Anus: the opening through which stool (poop) leaves the body Autoimmunity: an inflammatory reaction to one s own tissues Corticosteroids: medical term for a medicine more commonly known as steroids, they can be taken in oral, injectable or topical form to treat CD Crohn s disease: a chronic disease that causes inflammation of the small intestine, large intestine, or both Cytokine: a protein released by cells of the immune system that helps cells talk to one another Enema: a medicine in liquid or foam form that is given through the anus Fissure: a crack in the skin; with Crohn s disease, usually near the anus Fistula: abnormal connection between two locations in the body, for example, the connection can be between loops of intestine or between the intestine and another structure, such as the bladder, vagina or skin 16 17 GI075_Pediatric Crohns_Brch_Em5.indd 16-17 4/4/11 5:27:21 PM
Glossary (continued) Gastroenterologist: a physician specially trained in the diagnosis and treatment of patients with stomach and intestinal disease notes Gastrointestinal tract (GI tract): the digestive system, extending from the mouth to the anus and including the small and large intestine Immunomodulators: drugs that suppress or strengthen the body s immune response Inflammation: when parts of your body get red, swollen and painful Inflammatory bowel disease (IBD): a collective term for Crohn s disease and ulcerative colitis Intravenous (IV): when medicines are put directly into the bloodstream through a vein Remission: when symptoms of your IBD disappear for a period of time Small bowel: small intestine Suppository: medicines in capsule form that are given through the anus Ulcerative colitis: a chronic disease that causes inflammation of the large intestine 18 YES!! Photography is being used for illustrative purposes only and any person depicted in the content is a model. GI075_Pediatric Crohns_Brch_Em5.indd 18-19 4/4/11 5:27:26 PM
YOUR Treatment ide Gu Insert health care professional business card Sponsored by an unrestricted education grant from Merck Canada Inc. 075_Pediatric Crohns_Brch_Em5.indd 20 4/4/11 5:27:28 PM