Understanding Your Benefits and Risks

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1 IBD Treatment Options Understanding Your and What is IBD? Inflammatory bowel disease (IBD) is a chronic disease for which there is currently no cure. It is a group of disorders that involve chronic inflammation of all or part of the digestive tract. Like many chronic diseases, IBD can alternate between severe episodes (flare-ups) and stretches of time with milder symptoms or no symptoms at all (disease remission). It can be painful, affect growth in children, and sometimes lead to serious complications. The disease has two main forms: ulcerative colitis (UC) and Crohn s disease (CD). the large intestine. Symptoms, which usually develop gradually, include: Bloody diarrhea of variable severity False urges to have a bowel movement Abdominal pain and cramping Nausea and vomiting Decreased appetite and weight loss Mild fever Anemia Loss of body fluids Poor growth, in children In some cases, symptoms outside the digestive tract (e.g., arthritis, osteoporosis, sclerosing cholangitis, uveitis) Ulcerative colitis Crohn s disease Ulcerative colitis UC typically affects only the innermost lining of the rectum and large intestine (colon), starting in the rectum and extending continuously for variable stretches through Crohn s disease CD may develop gradually or suddenly and can occur anywhere along the digestive tract from the mouth to rectum ( gum to bum ), though it usually affects the lower part of the small intestine and the upper part of the colon. Diseased sections of bowel may alternate with healthy, uninvolved sections, and the inflammation may spread deep into the affected areas. Symptoms, which vary widely depending on the site(s) or location(s) of disease along the digestive tract, may include: Abdominal pain Cramping Diarrhea Nausea Vomiting Reduced appetite and weight loss Poor growth and pubertal delay in children

2 2 / 5 IBD Treatment Options Understanding Your and Understanding the benefits and risks of IBD treatment options Ongoing treatment of any chronic disease is imperative. IBD is typically treated with a series of medications. Your treatment plan will likely revolve around medications designed to reduce intestinal inflammation, control your symptoms and even prevent long-term damage from inflammation. When you have the proper treatment, you can expect to enjoy improved physical health, greater quality of life, less abdominal pain, less fatigue and significantly less depression. There is no clear roadmap of how your IBD will progress over time. Everyone is different. You will experience peaks and valleys of symptoms over the years. To make the right decision about your IBD treatment, you need to balance the benefits and risks of treatment against the risks of no treatment. All medications have benefits, risks, and side effects. However, it is vital for you to understand that not treating the disease can be even more dangerous. When you get the right treatment for your stage of disease, situation and lifestyle, the benefits of treatment far outweigh the risks. Most people living with IBD go on to lead fulfilling lives despite the challenges of the illness. Treatment can help you maximize your health. With the proper treatment, you can: Reduce complications Reduce the number and frequency of flares Minimize hospital stays and surgery Improve healing Enjoy longer periods of remission Experience a better quality of life IBD can be frustrating and debilitating. Finding the best medicine and consistently following the recommended treatment can help you control your disease. When you achieve your best health, you multiply your opportunities to develop physically, intellectually, emotionally and socially. A standard of health that allows you to enjoy and fully participate in work, school and social situations should be your goal. Learning the Language What is adherence? Researchers and doctors often use the term adherence or compliance to describe how well patients follow the treatment they have been prescribed. This can include taking medication at the proper times, taking all of the medication, refilling prescriptions and coming to appointments for infusion or injections faithfully. The word flare refers to the symptoms you experience when your disease is active and causing tissue to become become inflamed and irritated. The most common symptoms of IBD flares are abdominal pain and bloody diarrhea. Common symptoms also include weight loss, fatigue, fever, aching joints, skin and mouth sores, and inflamed eyes. are additional ailments that you may experience as a result of living with a chronic disease. When you have IBD, you may experience: inflammation of the eyes, skin or joints, liver or bile ducts anemia, malnutrition, osteoporosis bowel obstruction, ulcers, fistulas, anal fissures, colon cancer delayed growth or sexual development in children When you have IBD, the interior layer of tissue lining your intestine (called the mucosa) gets damaged. Mucosal healing is the restoration of healthy mucosa. Another challenge of living with IBD is the development of abnormal connections between your intestine and other organs. These are called fistulas. Proper medication may help reduce the likelihood of developing fistulas. Having surgery and spending time in hospital can be risky for anyone, so it is better to avoid these events unless absolutely necessary. is generally accompanied by pain and muscle loss and puts you at risk of a reaction to anesthesia, bleeding, blood clots, heart attack and stroke. The time you spend in hospital for surgery also puts you at risk of infection. In addition, surgery disrupts personal relationships, work and school.

3 3 / 5 IBD Treatment Options Understanding Your and 5-ASAs 5-amino salicylic acid (5-ASAs), also known as mesalamine, reduces inflammation in the intestine, controls diarrhea and helps maintain remission (freedom from symptoms). 5-ASAs can be used at the same time as other medications, such as immunosuppressants and steroids. The goal of 5-ASA therapy is to help you achieve and maintain remission if you have mild to moderate ulcerative colitis and colonic Crohn s disease. Some formulations also help induce and maintain remission of mild, small intestinal Crohn s disease. 5-ASAs are available in different forms that target specific areas of the intestines: Orally to treat the small intestine (Pentasa ) Orally to treat the colon (Asacol, Salofalk, Pentasa, Mesavant, Measal ) Rectally (as a suppository or enema) to treat the bottom part of the colon (Salofalk, Pentasa ) Oral and rectal 5-ASAs are often used in combination during disease flares. Mild to Moderate IBD Infection, Intolerance & Cancer Steroids Steroids rapidly reduce inflammation by suppressing the activity of immune cells. The most common steroids used to treat IBD (prednisone, methyprednisone, and hydrocortisone) circulate throughout the whole body. Some newer steroids (e.g., budesonide) target specific areas of the intestine, and tend to have fewer side effects and less toxicity. Steroids are a short-term therapy to control acute flares and achieve remission. They are not used as maintenance therapy. Steroids can be taken with maintenance medications such as 5-ASAs, immunosuppressants, and biologics. This means you can begin treatment with a maintenance drug while still on steroids. Once your symptoms improve, your doctor will carefully and gradually wean you off the steroid. Depending on the severity and location of the disease, steroids can be delivered orally, rectally, or intravenously. Do not stop taking steroids on your own! It is very important to slowly wean your body from these drugs under the direction of your physician. When using steroids, you should: Wear a Medical Alert bracelet or necklace with the steroid name engraved Get your blood pressure checked at each visit Have your blood sugar checked at least once while on the steroid for moderate to severe IBD Severity of Inflammation & cancer Infection & intolerance

4 4 / 5 IBD Treatment Options Understanding Your and Immunosuppressants Immunosuppressants are drugs that suppress the immune system, thus reducing inflammation and preventing the body from mistakenly attacking its own digestive system (a feature of IBD). Immunosuppressants aims to decrease the use of steroids, bring about remission, and maintain remission for patients with moderate to severe disease. Immunosuppressants have fewer and less severe side effects than steroids, so you can use them for longer periods of time. It can take several months for oral immunosuppressants to achieve their full effect but they can be combined with steroids until that time. You can also use them with other medications for example, to prevent your disease from flaring while you are tapering off steroids. Commonly used immunosuppressants are azathioprine (Imuran), 6-mercatopurine (Purinethol), and methotrexate. Immunosuppressants can be taken orally and Methotrexate can be taken orally or by injection. Infection, intolerance & cancer Biologics Biologics are proteins specifically engineered to block one or more inflammatory pathways in your body and thus reduce the inflammation that causes your IBD. One class of biologics blocks the action of a protein called tumor necrosis factor (TNF-α), which your body makes naturally. If you have IBD, you produce more of this protein than normal, which causes inflammation and damage to healthy tissue. By suppressing TNF-α production, anti-tnf biologics reduce inflammation and damage. Biologic therapy aims to induce and maintain remission for patients with moderate to severe disease. Sometimes, biologics are used in combination with other IBD medicines to achieve a better treatment effect and/ or reduce the risk of developing antibodies against the biologic. Biologics are delivered in one of two ways: through intravenous (IV) infusion by a healthcare provider at a clinic by subcutaneous injection which you can do yourself or have done by a trained nurse at home or in a clinic Infection, Intolerance & Cancer

5 5 / 5 IBD Treatment Options Understanding Your and Summary While you can expect to have IBD for the rest of your life, current treatment options can help control the disease and minimize symptoms so you can enjoy a healthy, fulfilling life. Understanding your options and their associated benefits and risks can help you make the best decisions about your health. To get the most out of your treatment, you need to follow the plan that you and your doctor have discussed and agreed upon as being best for you, your body, situation and lifestyle. It is important that you be involved in decisions about your treatment. If you don t understand something your doctor tells you, don t be afraid to ask questions. If you find your drug regimen difficult to follow or wish to try out a different type of treatment, tell your doctor. If cost is a barrier, discuss it with the staff at your doctor s office: there may be a solution you didn t know about. To get the most out of your treatment, become a partner with your doctor: deciding on a treatment plan together, asking questions or for more information, and letting your doctor know how things are going at every step of the way. About the CDHF The Canadian Digestive Health Foundation provides expert advice and compassionate support to the millions of Canadians suffering from digestive disorders. We help patients living with IBD and other gastroentestinal illnesses recognize symptoms, understand treatment options, communicate with their health teams, and find effective ways to successfully manage their disease so they can enjoy living life with confidence and optimism. CDHF App helps track information The CDHF has developed a smart phone app for iphone and Android called Gi BodyGuard to help you quickly, easily and privately track and share your digestive symptoms with your physician. Gi BodyGuard has a built-in symptom tracker (stool, pain, blood), food, fitness and medication trackers, a health history form and appointment/ medication reminders. Using Gi BodyGuard is quick, easy and private. As well, Gi BodyGuard lets you produce comprehensive reports so you can share important information with your physician during your next appointment. You can download Gi BodyGuard for free at: Overview Learning more about IBD and your treatment options Tools developed by the CDHF include fact guides, videos, on-line seminars, Gi BodyGuard app and more. UNDERSTANDING INFLAMMATORY BOWEL DISEASE IBD Inflammatory bowel disease (IBD) is at least two, separate disorders that cause inflammation (redness and swelling) and ulceration (sores) of the small and large intestines. These two disorders are called ulcerative colitis and Crohn's disease. Ulcerative colitis causes ulceration and inflammation of the lining of the large bowel only, beginning at the rectum (proctitis) and extending upwards varying distances. Crohn's disease can occur anywhere in the digestive tract but is common in the lower small bowel (ileum) or large bowel. Malnutrition and blood disorders are common conditions in IBD patients found to be caused by avoiding food items either because of existing symptoms or concern that they may bring on symptoms. Almost half of IBD patients have additional health issues affecting their joints, skin, eyes, and biliary tract that may be more debilitating than the bowel symptoms. Canada has one of the highest incidence and prevalence rates of IBD in the world with more than 200,000 Canadians living with the disease. These disorders are expensive and can be debilitating. The total direct and indirect costs of IBD are $1.8 billion with the main indirect cost being related to long-term work loss. The average age for people developing IBD often coincides with the most important socioeconomic period of life. The severity of symptoms may prevent those with IBD from realizing their career potential or family creation. Symptoms Many of the symptoms of IBD are similar. Symptoms outside the gut may include aching, sore joints, skin and mouth sores and red, inflamed eyes. The most common symptom of ulcerative colitis is bloody diarrhea. There may also be weight loss, fatigue, fever and abdominal pain. The most common symptoms of Crohn's disease are abdominal pain (often in the right, lower area of the abdomen) and diarrhea. There may also be rectal bleeding, weight loss and fever. Children may suffer poor growth. How do I know if I have IBD? Tests are needed to determine whether the patient has ulcerative colitis or Crohn's disease and to rule out other causes. To diagnose these disorders the doctor will take a complete history and perform a physical examination. In addition, blood tests are used to find out if you are anemic (low blood count) as a result of blood loss, or if there is an increased number of white blood cells in your body, suggesting an inflammatory process. A Family Resource for Living with Crohn s Disease PANCREATITIS IRRITABLE BOWEL SYNDROME (IBS) PEPTIC ULCER COLITIS DIARRHEA IBD CELIAC DISEASE ACID REFLUX GERD COLON CANCER PEPTIC ULCER CONSTIPATION PANCRATITIS ULCERATIVE COLITIS CROHN S DISEASE IBD ACID REFLUX BARRETT S OESOPHAGUS OESOPHAGEAL CANCER DIVERTICULITIS CROHN S DISEASE IBS CELIAC DISEASE GERD GASTROESOPHAGEAL REFLUX PANCREATITIS IRRITABLE BOWEL SYNDROME (IBS) PEPTIC ULCER COLITIS DIARRHEA IBD CELIAC DISEASE ACID REFLUX GERD COLON CANCER PEPTIC ULCER CONSTIPATION PANCRATITIS ULCERATIVE COLITIS CROHN S DISEASE IBD ACID REFLUX BARRETT S OESOPHAGUS OESOPHAGEAL < CDHF.ca> A family resource for living with Crohn s Disease 1 CDHF.ca Please note: The information contained in this digestive disorder guide is not a substitute for medical care and the advice of your physician. There may be variations in treatment that your physician may recommend based on your individual facts and circumstances. Always consult with your physician when you have concerns about your health. This guide was made possible through an educational grant from AbbVie. The CDHF is the foundation of the Canadian Association of Gastroenterology.

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