Understanding Your Benefits and Risks

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1 IBD Treatment Options Understanding Your Benefits and Risks benefit risk assessment tool

2 Understand your options. Improve your health... and life. Inflammatory bowel disease (IBD) is 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 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. Canada has one of the highest incidence and prevalence rates of IBD in the world with more than 230,000 Canadians living with the disease. As a person living with IBD, it is important that you understand your disease and treatment options. Together we will explore the options available for treating your IBD so that you can understand the benefits and risks associated with each type of treatment.

3 Taking proactive steps to control your IBD IBD is a chronic disease there is currently no cure. This means you will have IBD for the rest of your life. There are multiple therapies that can help you enjoy a healthy, fulfilling life. You need to be informed, proactive and involved in your care. Understanding your options and the benefits and risks of each type of therapy can help you make the best decision for your body, situation and lifestyle. IBD is typically treated with a series of medications. You may be prescribed: biologics immunosuppressants steroids 5-ASAs IBD Therapy Options Biologics Immunosuppressants Steroids 5-ASAs The goal of these therapies is to reduce the inflammation that triggers your symptoms, limit complications and help get you into remission so you can maximize your overall health.

4 No therapy is not an option! When you do not take your medication as prescribed, or stop taking your medication altogether, you risk flaring your disease and putting your health and quality of life at risk. Like all medications, those used to treat IBD have different potential benefits, risks, and side effects. It is imperative that you understand that while medications have potential risks and side effects, not treating the disease can be even more dangerous. The potential risks of not treating your IBD include: Symptom flare Reduced quality of life Missed school / work Malnutrition Hospitalization Surgery Ostomy Infections / abscess Cancer Anemia Bowel obstruction Pregnancy complication Perianal / vaginal complications Depression Death

5 Enjoy your life 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. 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 When you understand the benefits and risks of treatment, you can take control of your health and live your life with confidence and optimism.

6 Alarm symptoms... recognize your risks A change in your symptoms may mean that additional treatment is needed. Talk to your doctor immediately if you experience a new symptom, a change in your current symptoms or any of the following: Increased bowel movements and sense of urgency Rectal bleeding, blood in stool Unexplained or unintentional weight loss An unusual amount of cankers or sores in your mouth Failure to gain weight (especially in children) Delayed puberty in teens Drainage of pus or an abscess near the anus Anemia Eye redness / pain Severe joint pains Nausea / vomiting

7 What are 5-ASAs? 5-amino salicylic acid (5-ASA), also known as mesalamine, reduces inflammation in the intestine, controls diarrhea and helps maintain remission (freedom from symptoms). 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. Generally, 40% to 80% of IBD patients respond to this medication. 5-ASAs can be used at the same time as other medications, such as immunosuppressants and steroids. 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 5-ASAs / Salicylates Benefits Mild to Moderate IBD Risks Quality of Life Surgery Flares Healing Complications Infection, Intolerance & Reaction Cancer

8 Very low risk of infection Infection may occur when an organism such as a virus, bacterium, fungus or parasite invades your body, multiplies and causes your body to create harmful toxins. Symptoms of infection may include fever, redness, swelling, tenderness, and heat at the site of the infection. The risk of developing an infection while taking 5-ASAs is no higher than if you re not taking any medications. The dose of 5-ASA does not affect the risk of infection. Infection 5-ASAs / Salicylates Infection

9 Very low risk of developing intolerance or an allergic reaction Intolerance to a drug means that your body has a negative reaction to that drug. An allergic reaction to a drug means that the drug has triggered an abnormal response in your immune system. This can occur after the first dose or over time. Symptoms of intolerance and allergic reactions are often similar and may include hives, rash, swelling or fever. A serious drug reaction may cause anaphylaxis, which is life-threatening and requires immediate medical attention. Intolerance and allergic reactions to 5-ASAs are very rare. In the unlikely event you have such a reaction, your symptoms will be treated by a healthcare provider and the drug stopped. You will recover quickly. Intolerance or Allergic Reaction 5-ASAs / Salicylates Intolerance / Reaction

10 Cancer No extra risk of developing cancer Cancer occurs when abnormal cells multiply uncontrollably in a particular area of the body. 5-ASAs have not been found to increase the risk of cancer in IBD patients at any dose taken for either a short (months) or long (years) period of time. Cancer 5-ASAs / Salicylates Cancer

11 Other Risks 5-ASAs cause side effects in up to 15% of patients. Common side effects include abdominal pain, nausea, diarrhea, headache, worsening disease, rash, nose and throat inflammation, and low blood platelet count. Of course, you may experience similar symptoms even if you re not taking any medications. 5-ASAs have been linked to the development of inflammation of the kidney (nephritis), liver (hepatitis), pancreas (pancreatitis) and the sac linking your heart (pericarditis), although these events are very rare. It is important to alert your physician if you experience: Cloudy or bloody urine Dark urine Yellowing of the skin and the whites of eyes. If you find side effects hard to manage, your doctor can reduce the dose of 5-ASAs or switch to a different formulation. Other Risks 5-ASAs / Salicylates Other Risks

12 Fewer flares The word flare refers to the symptoms you experience when your disease is active and causing tissue to 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. 5-ASA treatment reduces your risk of having a flare: out of every four patients treated with 5-ASAs, three will have a lower risk of flare than if they didn t take any medication. Disease flares and loss of remission often occur when 5-ASAs are not taken as prescribed, so it is important to continue to follow your doctor s prescription even if you start feeling better. If a 5-ASA is stopped and no other IBD-related medication is taken, you are at risk of losing control over IBD symptoms. Because IBD is a chronic disease, medication should always be taken as prescribed even when you are feeling well. 5-ASAs / Salicylates Flares

13 Reduced complications IBD is a chronic disease that can lead to several health complications, including: 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 Your doctor may prescribe 5-ASAs if you have mild to moderate IBD. In general, 5-ASAs are well-tolerated by IBD patients over a wide range of doses. 5-ASAs / Salicylates Complications

14 Reducing hospital stays and surgery Having surgery and spending time in hospital can be risky for anyone, so it is better to avoid these events unless absolutely necessary. Surgery 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 puts you at risk of infection. In addition, surgery disrupts personal relationships and requires you to take time off work or school. Because 5-ASAs help induce and maintain remission, they reduce the risk of hospitalization or surgery. 5-ASAs / Salicylates Hospital / Surgery

15 Supporting healing When you have IBD, the interior layer of tissue lining your intestine (called the mucosa) gets damaged. Mucosal healing is the restoration of a healthy mucosa. 5-ASAs support mucosal healing. 5-ASAs / Salicylates Healing

16 Enjoy Your 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 can 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 is a realistic goal. Patients taking 5-ASAs have achieved a better quality of life within 2 4 weeks, as well as a reduction in pain, fatigue, and depression. 5-ASAs / Salicylates Quality of Life

17 What are 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, so they 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 steroids. Depending on the severity and location of the disease, steroids can be delivered orally, rectally, or intravenously. 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 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. Steroids Benefits for moderate to severe IBD Risks Quality of Life Surgery Severity of Flares Inflammation Complications Reaction & cancer Infection & intolerance

18 High risk of infection Infection may occur when an organism such as a virus, bacterium, fungus or parasite invades your body, multiplies and causes your body to create harmful toxins. Symptoms of infection may include fever, redness, swelling, tenderness, and heat at the site of the infection. High-dose steroid therapy triples the risk of infection in IBD patients to 13 out of 100 Infection High-dose steroid therapy increases the risk of developing infections after surgery Because of the high risk of infection, steroids are only used for short periods of time and only to induce remission during a flare. Risk of serious infection 13 out of 100 Steroids Infection

19 High risk of developing intolerance Very low risk of an allergic reaction Intolerance to a drug means that your body has a negative reaction to that drug. An allergic reaction to a drug means that the drug has triggered an abnormal response in your immune system. This can occur after the first dose or over time. Intolerance Symptoms of intolerance and allergic reactions are often similar and may include hives, rash, swelling or fever. A serious drug reaction may cause anaphylaxis, which is life-threatening and requires immediate medical attention. Many patients are intolerant to steroids. There are many risks associated with these drugs (outlined in the other risks section of this publication). Allergic reactions to steroid therapy occur very rarely, if ever. Allergic Reaction Steroids Intolerance / Reaction

20 Cancer NO risk of developing cancer Cancer occurs when abnormal cells multiply uncontrollably in a particular area of the body. Steroid therapies have not been found to increase the risk of cancer. Cancer Steroids Cancer

21 Other Risks Steroid therapy poses many significant risks, such as weight gain, puffiness around the face, emotional and psychiatric disturbances, and infections. Long-term use may lead to skin markings similar to stretch marks, delayed wound healing, metabolic bone disease (e.g., osteoporosis), glaucoma, and cataracts. Common adverse effects of steroids: Acne /100 Swelling of the face /100 Osteoporosis (with long term use) /100 Glaucoma (with long term use) /100 High blood pressure /100 Eye cataracts (with long term use) /100 Easy skin bruising (with long term use).... 7/100 Other Risks Risk of other adverse effects 7-50 out of 100 Alert your healthcare provider if you experience: Blurred vision Vomiting/nausea Shortness of breath Chest pain Headaches IMPORTANT: Never stop your steroid abruptly or without your physician s guidance as this action could cause you to become extremely sick. Steroids Other Risks

22 Severity of flares The word flare refers to the symptoms you experience when your disease is active and causing tissue to 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. Steroids are used to reduce inflammation and its symptoms during a flare. They are for short term induction use only and are not appropriate as maintenance therapy. Stopping steroid therapy prematurely will lead to disease relapse in 100% of patients. Steroids Flares

23 Reduced complications IBD is a chronic disease that can lead to several health complications, including: 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 Steroids are prescribed when your disease is active. When your disease is active, it is important to reduce the inflammation and achieve remission as quickly as possible. If you don t respond to other medications, a short course of steroids could help you avoid disease complications or hospitalizations. Steroids Complications

24 Reducing hospital stays and surgery Having surgery and spending time in hospital can be risky for anyone, so it is better to avoid these events unless absolutely necessary. Surgery 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 puts you at risk of infection. In addition, surgery disrupts personal relationships and requires you to take time off work or school. Oral or rectal steroids can help treat your disease flare. This may allow you to avoid hospitalization from a worsening flare. Up to 75% of ulcerative colitis (UC) patients with severely active disease require an operation that removes the large intestine. If you have a severe UC flare, intravenous steroid therapy may help you avoid this operation. Steroids Hospital / Surgery

25 Controlling Inflammation IBD may cause sores, or ulcers, that tunnel through the intestine and into the surrounding tissue. These abnormal tunnels, called fistulas, often become infected. While fistulas can often be treated with medication, they sometimes require surgery and healing can be problematic. Steroids do not heal intestinal ulcers or fistulas very well. Their function is to control and reduce inflammation during a flare until the maintenance medication (5-ASAs, immuosuppressants, biologics) starts working. The maintenance medication is generally what heals the intestine. Steroids Inflammation

26 Enjoy Your 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 can achieve your best health, you multiply your opportunities to develop physically, intellectually, emotionally and socially. By reducing the inflammation and thus the symptoms of a flare, steroids may help you enjoy and participate more fully in work, school and social situations. Patients with moderate to severe IBD who respond to steroid therapy typically start feeling better within 2 weeks. Within 8 12 weeks they report a better quality of life, as well as a reduction in pain, fatigue, and depression. Steroids Quality of Life

27 What are immunosuppressants? Immunosuppressants are drugs that suppress the immune system, thus reducing inflammation and preventing the body from mistakenly attacking its own digestive system. Commonly used immunosuppressants are azathioprine (Imuran), 6-mercatopurine (Purinethol), and methotrexate. Immunosuppressant therapy aims to decrease the use of steroids, bring about remission, and maintain remission for patients with moderate to severe disease. Benefits 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; 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 re tapering off steroids. All immunosuppressants can be taken orally. Methotrexate can be taken orally or by injection. Risks Immunosuppressants Quality of Life Surgery Flares Healing Complications Infection, intolerance & cancer Reaction

28 Low risk of infection Infection may occur when an organism such as a virus, bacterium, fungus or parasite invades your body, multiplies and causes your body to create harmful toxins. Symptoms of infection may include fever, redness, swelling, tenderness, and heat at the site of the infection. Some immunosuppressants are known to decrease white blood cell count. This may lead to a condition called leukopenia, which increases the risk of infection by 3-fold. If you re taking immunosuppressants, your doctor will monitor your white blood cell count regularly so appropriate action can be taken in case you develop leukopenia. When immunosuppressants are used at the same time as steroids, the risk of infection increases. However, the benefits of starting immunosuppressant therapy while tapering off steroids outweigh this temporary risk increase. The risk of serious infection from immunosuppressants is 5 out of100. Infection Risk of serious infection 5 out of 100 Immunosuppressants Infection

29 Very low risk of developing intolerance Medium risk of an allergic reaction Intolerance to a drug means that your body has a negative reaction to that drug. An allergic reaction to a drug means that the drug has triggered an abnormal response in your immune system. This can occur after the first dose or over time. Symptoms of intolerance and allergic reactions are often similar and may include hives, rash, swelling or fever. A serious drug reaction may cause anaphylaxis, which is life-threatening and requires immediate medical attention. The risk of intolerance to immunosuppressants is very low (2 out of 100). Pancreatitis is one of the more common intolerance reactions. The risk of allergic reactions from immunosuppressants is medium causing a drug-related reaction in 5-20 out of 100 with IBD. Intolerance Risk of intolerance 2 out of 100 Reaction Risk of reaction 5-20 out of 100 Immunosuppressants Intolerance / Reaction

30 Cancer Very low risk of developing cancer Cancer occurs when abnormal cells multiply uncontrollably in a particular area of the body. One class of immunosuppressant, called thiopurines, do not increase the risk of developing a solid tumour but increase the risk of lymphoma 4-fold in IBD patients. The risk is still extremely low at 1 out of 250,000. Immunosuppressants have been linked to an increased risk of non-melanotic skin cancers. Cancer Immunosuppressants Cancer

31 Other Risks Like all medications, immunosuppressants may have side effects. Nausea occurs in 10 to 20% of patients, but generally subsides after a few days. Common side effects also include diarrhea and vomiting. Elevated liver enzymes occur in about 10% of patients. Your doctor will monitor your liver enzymes through blood tests. In rare cases, liver enzymes get too high and the immunosuppressant needs to be stopped. Alert your health care provider if you experience any of the following symptoms: Yellowing of the skin or whites of eyes Dark urine Chest pain Fever Shortness of breath Other Risks Immunosuppressants Other Risks

32 Fewer flares The word flare refers to the symptoms you experience when your disease is active and causing tissue to 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. Immunosuppressants significantly reduce the risk of flares and their symptoms. Stopping immunosuppressant therapy on your own will lead to disease relapse, especially if no other IBD-related medication is taken. If immunosuppressant therapy is stopped prematurely while taking other IBD medications such as biologic therapy, this may reduce the likelihood that the biologic will induce and maintain remission. Immunosuppressants Flares

33 Reduced complications IBD is a chronic disease that can lead to several health complications, including: 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 Immunosuppressants are recommended in the treatment of fistulas for patients with moderate to severe IBD. Immunosuppressants can reduce the risk of developing fistulas. Immunosuppressants can improve IBD symptoms that occur outside the digestive tract (e.g., arthritis). Immunosuppressants Complications

34 Reducing hospital stays and surgery Having surgery and spending time in hospital can be risky for anyone, so it is better to avoid these events unless absolutely necessary. Surgery 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 puts you at risk of infection. In addition, surgery disrupts personal relationships and requires you to take time off work or school. Immunosuppressant maintenance therapy can significantly reduce your risk of both hospitalization and surgery. Immunosuppressants Hospital / Surgery

35 Supporting healing and longer periods of remission When you have IBD, the interior layer of tissue lining your intestine (called the mucosa) gets damaged. Mucosal healing is the restoration of a healthy mucosa. Immunosuppressant therapy helps to promote mucosal healing in the gastrointestinal tract. Immunosuppressants Healing

36 Enjoy Your 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 can 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 is a realistic goal. Immunosuppressant therapy is an important aspect of therapy that will help you regain remission, avoid steroids, and improve quality of life. Immunosuppressants Quality of Life

37 What are 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 the 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 injection, which you can do yourself at home or obtain from a health care professional in a clinic Benefits Risks Quality of Life Healing Surgery Complications Flares Infection, Intolerance & Cancer Reaction Biologics

38 Very low risk of infection Infection may occur when an organism such as a virus, bacterium, fungus or parasite invades your body, multiplies and causes your body to create harmful toxins. Symptoms of infection may include fever, redness, swelling, tenderness, and heat at the site of the infection. Infection The risk of serious infection related to biologic use is 3 out of 100. Risk of serious infection 3 out of 100 Biologics Infection

39 Very low risk of developing intolerance Low risk of allergic reaction Intolerance to a drug means that your body has a negative reaction to that drug. An allergic reaction to a drug means that the drug has triggered an abnormal response in your immune system. This can occur after the first dose or over time. Symptoms of intolerance and allergic reactions are often similar and may include hives, rash, swelling or fever. A serious drug reaction may cause anaphylaxis, which is life-threatening and requires immediate medical attention. Intolerance Reaction The risk of developing intolerance to biologics is under 3 out of 100. The risk of having an allergic reaction to biologics is 3 17 out of 100. Biologics are usually mild and respond well to conventional therapy. Some people taking intravenous biologics develop infusion reactions. In most cases, these reactions are easily managed by treating symptoms, and future reactions can be minimized by: Using premedication Slowing the infusion rate Temporarily stopping the infusion until the reaction stops Risk of intolerance 3 out of 100 Risk of reaction 3-17 out of 100 Biologics Intolerance / Reaction

40 Cancer Very low risk of developing cancer Cancer occurs when abnormal cells multiply uncontrollably in a particular area of the body. In very rare cases, individuals using a biologic may develop lymphoma or skin cancer. The risk of cancer related to biologic use is 6 out of 100,000 Risk of cancer To help reduce this risk even further, people on biologics have regular blood tests to monitor changes in bodily functions. If test results are abnormal, the doctor will investigate the problem and may change the treatment regimen. Biologics Cancer

41 Other Risks Common side effects of biologics include headache, fatigue, nausea, rash, and psoriasis (red scaly patches or raised red bumps under the skin). Serious side effects from biologic treatment are rare. See your doctor immediately if you experience any of the following alarm symptoms: Other Serious Risks Bruising or bleeding very easily Difficulty breathing or shortness of breath Tingling/numbness/weakness in arms or legs Vision problems Yellowing of the skin or whites of eyes Dark brown urine Fever that does not go away Swelling of the ankles/feet Sudden, unexplained weight gain Chest pain Biologics Other Risks

42 Fewer flares The word flare refers to the symptoms you experience when your disease is active and causing tissue to 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. Among people taking biologics for IBD, it is generally accepted that: Fewer than 20% will have a disease flare within the first year of treatment Up to 40 70% with moderate to severe disease will have a clinical response Up to 17 41% will go into clinical remission Stopping some biologic therapies may lead to disease relapse and flares in most patients. Biologics Flares

43 Reduced complications IBD is a chronic disease that can lead to several health complications, including: 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 Biologics help reduce TNF-α levels, which reduces inflammation and tissue damage in the gastrointestinal tract Some biologics may reduce the need for colectomy and the risks from this surgery Biologics can protect you from complications after surgery Biologics can reduce common IBD symptoms including pain, fatigue, and bleeding Biologics Complications

44 Reducing hospital stays and surgery Having surgery and spending time in hospital can be risky for anyone, so it is better to avoid these events unless absolutely necessary. Surgery 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 puts you at risk of infection. In addition, surgery disrupts personal relationships and requires you to take time off work or school. IBD patients taking biologics have significantly lower hospitalization and surgery rates than those who do not use biologics. NOTE: If you need to have surgery, whether related to your IBD or not, being on a biologic has no impact positive or negative on the outcome of your procedure. Biologics Hospital / Surgery

45 Supporting healing and longer periods of remission When you have IBD, the interior layer of tissue lining your intestine (called the mucosa) gets damaged. Mucosal healing is the restoration of a healthy mucosa. IBD patients taking certain biologics experience greater mucosal healing and longer periods of remission than those who do not use biologics. A fistula is an abnormal connection between your intestine and another organ. Fistulas heal in about 40 to 50% of IBD patients taking biologics, compared to just 13% of those who do not use biologics. Biologics Healing

46 Enjoy Your 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 can 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 is a realistic goal. Patients taking a biologic have been shown to experience: Improved physical health Greater quality of life Less abdominal pain Less fatigue Significantly less depression Biologics Quality of Life

47 A Family Resource for Living with Crohn s Disease 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. Tools developed by the CDHF include fact guides, videos, on-line seminars, Gi BodyGuard app and more. A family resource for living with Crohn s Disease To learn more, visit UNDERSTANDING INFLAMMATORY BOWEL DISEASE IBD Overview 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. 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> 1 CDHF.ca Development of the CDHF IBD BRAT was made possible through an education grant from Janssen Inc. The views herein do not necessarily reflect those of Janssen Inc. UNDERSTAND. TAKE CONTROL. LIVE BETTER.

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