Inflammatory Bowel Disease Digital Toolkit for the Newly Diagnosed
If you have recently been diagnosed with Inflammatory Bowel Disease (IBD) – Crohn’s disease or ulcerative colitis, you are likely to set sail on a journey of new self-discovery. While you can’t change your diagnosis, you can make informed choices so that you can live the best life possible. CDHF knows you may have a lot of questions, and we’re here to help! Empowerment starts with information – so let’s get started!
Scroll through the content or click below to find what you’re looking for.
- Basics of IBD – Learning more about Crohn’s disease and ulcerative colitis
- Living with IBD (what causes it, who gets it (Stats), complications, extra-intestinal Manifestations (EIMs) is there a cure?)
- Coping Emotionally- Mindfulness and Meditation
- Sexuality and IBD
- Diet and Lifestyle Changes
- Transitioning from Pediatric to Adult IBD
- Treatment Options
- Surgery for IBD
- Patient Stories
First things first – let’s understand the basics of 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.
Crohn’s disease can occur anywhere in the digestive tract but is common in the lower small bowel (ileum) or large bowel.
Ulcerative colitis is a chronic disorder affecting the large intestine (colon). The digestive system (including the stomach, small and large intestines) converts food into nutrients and absorbs them into the bloodstream to fuel our bodies. The colon’s main role is to absorb water and salts from undigested food waste. This action helps to thicken and solidify the stool, which is then expelled from the body through the anus.
Ulcerative colitis causes inflammation (redness and swelling) and ulceration (sores) along the lining of the colon, which can lead to abdominal pain, cramps, bleeding and diarrhea. The disease usually begins in the rectal area, which holds stool until you go to the bathroom, and may involve the entire colon over time. Ulcerative colitis is classified as an inflammatory bowel disease (IBD), due to the inflammation that occurs in the intestines. Another common form of IBD is called Crohn’s disease. Although the symptoms of ulcerative colitis are similar to Crohn’s disease, the conditions are different in several ways.
While both ulcerative colitis and Crohn’s disease are types of IBD, they should not be confused with Irritable Bowel Syndrome (IBS). IBS affects the muscle contractions and the sensitivity of the colon. Unlike ulcerative colitis and Crohn’s disease, IBS does not cause intestinal inflammation nor damage the bowel.
What causes IBD?
The exact cause of IBD is unknown. However, it is believed to be due to a combination of factors, including a person’s genes (inherited traits) and triggers in the environment. This interaction of genetic and environmental factors activates an abnormal response of the body’s immune system.
Normally, the immune system protects the body from infection. In people with ulcerative colitis, however, the immune system can mistake microbes (such as bacteria that are normally found in the intestines), food, and other material in the intestines, as invading substances.
When this happens, the body launches an attack, sending white blood cells into the lining of the intestines where they cause inflammation and ulcerations.
Living with IBD
If you have just been diagnosed, it’s important to know that you are not alone. Canada has one of the highest incidences and prevalence rates of IBD in the world with more than 200,000 Canadians living with the disease.
IBD is a chronic (long-term) condition with symptoms that can disappear and then flare up again throughout your life. Living with the unpredictable nature of Crohn’s can pose physical and emotional challenges that may seem overwhelming at times. However, there are several things that you can do to contribute to your health and well-being.
Be informed, proactive, and involved in your care. By establishing a solid partnership with your health care team, developing coping skills, and maintaining a positive outlook, it is possible to stay healthy and happy, despite living with IBD.
Why me? There are common factors that increase your risk of developing the disease and severity.
- Genetics and Environment: Research suggests that it may be a combination of factors including genetics and the environment that causes your immune system to react in a harmful way.
- Ethnicity: Crohn’s disease can affect anyone. Those of Caucasian and Jewish descent seem to be at a higher risk.
- Smoking: Research suggests that smoking increases the severity of the disease and increases risk of surgery.
How Crohn’s disease may affect you:
If you have Crohn’s disease, you may experience periods of active symptoms (also referred to as a flare) and other times when symptoms are absent (remission). When you are in a flare, symptoms of Crohn’s disease can be painful and debilitating.
You may experience:
- Abdominal pain and cramping
- Severe diarrhea
- Rectal bleeding
- Blood in stool
- Weight loss
- Diminished appetite
Why me? Research suggests that it may be a combination of factors including genetics and environment that causes your immune system to react in a harmful way.
How ulcerative colitis (UC) may affect you:
People with UC may have:
- Up to 20 bowel movements a day
- Have false urges to go to the bathroom
- Loose stool that contains blood, pus and mucus.
IBD is a difficult disease to live with when it is flaring because the symptoms It causes can be painful, embarrassing and debilitating.
Extra-intestinal Manifestations (EIMs) of IBD
You may have heard your gastroenterologist or IBD nurse mention the term extraintestinal manifestation (extra-intestinal-manifestation) or EIM. EIMs are conditions that affect different parts of the body, outside of the gut, and may be related to your IBD inflammation. The exact cause of EIMs is not completely understood, so more research is needed. EIMs commonly affect the skin, eyes, mouth or joints. Individuals with IBD can experience an EIM prior to their diagnosis, and it’s also possible to develop an EIM while in remission.
EIMs can be quite common among pediatric IBD patients. Research has shown that 50% of patients with UC and 80% with Crohn’s will develop at least one EIM at some point in living with the disease
Areas most commonly affected by EIMs:
Joint inflammation or arthritis, pronounced arth-ri-tis, is a common EIM of IBD and typically affects large joints like elbows, wrists, knees and ankles. Arthritis can cause pain, aching, stiffness and swelling in and around the joint(s). Some patients can develop pain and swelling in small joints like the hands, fingers and feet, and others may experience arthritis in their hips or back. Most arthritis symptoms improve once gut inflammation is under control. Some IBD therapies are also used to treat arthritic conditions, which provides added management of symptoms for IBD patients affected by both conditions.
Erythema nodosum (EN), pronounced era-theema no-dough-sum, is a common condition that affects the fat under the skin. EN appears as tender, red bumps often on the ankles, upper or lower legs, or forearms. The condition is harmless but can be uncomfortable. EN tends to occur during flare-ups and can improve with IBD treatments. 
Psoriasis, pronounced sore-rye-a-sis, is another common skin condition. It causes cells to build up quickly on the skins surface, creating small, dry scaling red patches that can be itchy and can appear anywhere on the body. If scratched, these patches may bleed. Topical creams and ointments can be used to treat mild to moderate psoriasis. Photo or ultraviolet light is another therapy used to treat this skin condition. Some IBD medications also treat psoriasis which is an added benefit to those with both conditions.
Aphthous stomatitis, better referred to as canker sores or cankers, are one of the most common oral EIMs of IBD. Canker sores are small, often whitish bumps found anywhere inside the mouth. This includes the lips, the roof of the mouth, the cheeks and tongue, and they can be painful. IBD patients who experience cankers tend to get sores when their disease is more active. Sores can be minor and disappear within a week. For some, they can last longer and require steroid treatment.
Some IBD patients are affected by eye conditions, with the most common being episcleritis, pronounced ee-pis-kler-itis. This eye condition affects the layer of tissue covering the white outer coating of the eye (also called the sclera), making the eye red, sore and inflamed. Episcleritis may present during an IBD flare and can be treated with cold compresses. In some cases, steroid drops may be required.
Two additional eye conditions linked with IBD are scleritis (skler-it is), inflammation of the sclera itself, and uveitis (u-vee-it is), inflammation of the middle layer of tissue in the eye wall. These conditions are more serious and can lead to vision loss, if not treated. If you experience eye redness and pain to one or both eyes, contact your health care provider. They may ask you to be assessed by an eye specialist. Both scleritis and uveitis may be treated with steroid drops.
Bones play an essential role in our bodies. Not only do they give our body structure, but they also protect our internal organs and store an essential nutrient, calcium. Two important nutrients that contribute to the health of our bones are calcium, and vitamin D. Calcium helps build and maintain strong bones, while vitamin D helps absorb and retain calcium. When you have IBD, inflammation in the small intestine can impair nutrient absorption. In addition, certain medications used to treat flares can interfere with the body’s ability to absorb nutrients like calcium. When the body struggles to develop, build and maintain bone, the bones can become weaker.
How IBD can affect bone health:
- Inflammation: The chemicals released as part of the inflammatory process can affect new bone growth.
- Malabsorption: Calcium and vitamin D are absorbed in the small bowel and are key to bone formation. When intestinal inflammation is present, it can make it more difficult for the body to absorb these important nutrients.
- Corticosteroids: Can slow or reduce bone growth and the amount of calcium absorbed by the body.
Lack of exercise may also contribute to bone loss. This is because impact, or weight bearing exercise, stimulates the body to strengthen the bones.  Health care providers will monitor the strength and health of your bones by ordering a bone density scan, which can be done using ultrasound or a DEXA scanner. Your gastroenterologist might recommend that you take calcium and/or vitamin D supplement to ensure you are getting enough of these bone supporting nutrients.
- Anemia: Anemia, pronounced a-nee-me-a, is another common EIM of IBD. If you are anemic, it means you have fewer red blood cells and/or lower levels of hemoglobin in your blood. Hemoglobin is a protein found in red blood cells and carries oxygen around the body.
There are different types of anemia, however the type most common among IBD patients is iron deficiency anemia (IDA). IDA can occur if there’s not enough iron in your diet, your body has difficulty absorbing iron from food, or you have ongoing blood loss from bowel inflammation. At your clinic appointment, your health care provider may order blood work to check your hemoglobin, vitamin D and inflammatory markers such as CRP. They like to check your iron level too. If it’s low, your health care provider may recommend that you eat more foods rich in iron, take an oral iron supplement, and in some cases, may prescribe an iron infusion.
The main symptom of anemia is tiredness or fatigue. When iron levels are very low, you may experience ongoing fatigue or tiredness along with headaches and general weakness. It is important to share these symptoms with your gastroenterologist so they can monitor and provide you with the best advice and treatment to manage anemia.
IBD is well known to affect the gastrointestinal tract, but EIMs can be just as troublesome to a person’s overall well-being with dramatic effects on a person’s quality of life. It’s important to share any symptoms that you may experience outside of your gastrointestinal tract, because they may or may not be related to a flare, and often times are treatable.
Information from CDHF partner RobbiesRainbow. For more information on IBD and children and/or teens visit RobbiesRainbow Melanie Watson contributed to the content and review of this article for accuracy and balance. Melanie Watson, MN, NP is a Nurse Practitioner- Pediatrics at the London Health Science Centre (LHSC), London, Ontario and has an adjunct appointment in the Arthur Labatt Family School of Nursing at Western University.
 Stawarski A, Iwanczak B, Krzesiek E, et al. Intestinal complications and extraintestinal manifestations in children with inflammatory bowel disease. Pol Merkur Lekarski 2006;20:22-5. Arthritis society of Canada, What is Arthritis? Jang et al. EIMs of pediatric IBD https://www.ibdclinic.ca/what-is-ibd/ibd-and-bones/
Is there a cure for IBD?
There is currently no known way to prevent or for IBD, but the proper strategy for managing this disease can help you lead a happier, healthier, fulfilling life.
Coping Emotionally – Meditation and Mindfulness
Can Meditation and Mindfulness help with Inflammatory Bowel Disease (IBD) symptoms?
Words like Meditation and Mindfulness have been floating around in the media for quite some time now, and the question remains, can these practices help with IBD symptoms? Anyone with a chronic illness can attest to the fact that taking care of your physical health is only half of the battle.
Many chronic diseases & disorders such as IBD are triggered by stress. We also know that there is a direct brain-gut connection. Our digestive tracts can affect our mental health as much as our mental health can affect our digestive systems. So, it stands to reason that practicing things like Meditation and Mindfulness could really help with symptoms of IBD.
There has never been a more stressful time for the immunocompromised! With COVID-19 still plaguing the planet, and back to school coming up, many parents, teachers and students with chronic illnesses such as IBD are more stressed about their health than ever before. So, what are Mindfulness and Meditation? How does one go about including these practices into their everyday lives, and how can they help patients with chronic illnesses such as Inflammatory Bowel Disease?
What are Mindfulness and Meditation?
While over the last few years, these terms have grown in popularity, especially in western culture, their meanings tend to be shrouded in skepticism and often regarded as a form of pseudo-science. However, there have been multiple studies done on the topic, that prove there is a great deal of benefits to practicing these two mental health maintenance strategies.
Practicing mindfulness is a form of therapy for the mind, that trains the brain in things like attentiveness and awareness. Over time, people who practice mindfulness regularly, can find a calm sense of consciousness in the present moment, alleviate anxiety triggers, identify negative emotions, their origins and accept these emotions and move forward with a renewed sense of control over their own minds (Rosenkranz, Melissa A, et al.)
Can practicing Mindfulness and Mediation relieve physical pain in IBD patients?
In a review of 428 empirical studies on mindfulness intervention for chronic pain, only 8 were randomized controlled trials (Song, Yan, et al.). This implies that right off the bat, there’s not quite enough evidence yet to truly answer this question. However, the analysis of the 8 randomized and controlled trials showed that although Mindfulness and Mediation did not alleviate chronic pain, it DID greatly improve the psychological comorbidity of chronic pain.
This means that in patients with IBD and other disorders that cause chronic pain, there is a strong correlation between living with chronic pain and the patient’s psychological health (Workman, Edward A., et al.) By regularly practicing Mindfulness and Mediation, a marked improvement has been shown in those patients involved in the 8 randomized controlled trial studies, in accessory conditions to their chronic illness.
“Mindfulness intervention led to greater improvement in psychological comorbidity with chronic pain, such as depression …and trait anxiety.” (Song, Yan, et al.).
Knowing what we know about the impact stress and depression can have on a patient’s likelihood of reverting into a flare, this fact is worth exploring more. It is extremely important for patients with IBD to be able to recognize what they’re feeling and why they are feeling the way they are. These practices help patients accomplish this, and once they do, they are more likely to respond in a positive way to feelings of depression and anxiety and regain control over their mental health. More research needs to be done on the topic; however, the current evidence is promising!
How does one get started with mindfulness and meditation?
There are tons of resources out there to help anyone get started with these practices. However, getting started is always a bit of a process, so we’ve done some research for you to deliver the best ways to get started if you’re new to practicing mindfulness and mediation.
The three most important aspects of mindfulness are:
- This is the act of having a serious conversation with yourself about WHY you are practicing mindfulness. What has brought you here? What is important to you, and what are you hoping to get out of this practice? Setting a hierarchy of things in your life that you would like to get under control is a good first step. You can check out this video interview we did with three ulcerative colitis patients to see what they do to organize their priorities. We love Emma’s ‘Pyramid of Prioritization,’ where she consciously maps out three major categories of her life and what needs to always come first. You can watch the full interview here.
- This is the toughest one. Attention refers to practicing your ability to draw your attention to the current moment. Anxiety tends to manifest due to our minds worrying about potential future outcomes, were as depression tends to revolve around feelings of regret and sadness over the past. (Eysenck, Michael W., et al.) By training our minds to pull out of these destructive patterns and re-ground ourselves in the present moment, we are able to achieve greater control over these feelings of fear, stress and anxiety.
- This last piece is about training our minds to treat ourselves kindly. Self-care starts with being kind to yourself and redirecting negative feelings into positive affirmations. This takes time and practice, but in time, this conscious attitude of calm and kindness towards yourself can make a huge difference in your overall mental well-being.
Other Resources on Mindfulness and Meditation:
Check out this great list by psycom.net to find some great resources to help you get started!
Eysenck, Michael W., et al. “Anxiety and Depression: Past, Present, and Future Events | Request PDF.” ResearchGate, www.researchgate.net/publication/247497269_Anxiety_and_depression_Past_present_and_future_events. Accessed 24 Aug. 2020.
Genentech. “A Mindful Approach to Chronic Disease.” Genentech: Breakthrough Science. One Moment, One Day, One Person at a Time., www.gene.com/stories/a-mindful-approach-to-chronic-disease. Accessed 24 Aug. 2020.
Rosenkranz, Melissa A, et al. “A Comparison of Mindfulness-Based Stress Reduction and an Active Control in Modulation of Neurogenic Inflammation.” Brain, Behavior, and Immunity, vol. 27, no. 1, 2013, pp. 174–84, www.ncbi.nlm.nih.gov/pubmed/23092711, 10.1016/j.bbi.2012.10.013. Accessed 22 Sept. 2019.
Rosenkranz, Melissa A., et al. “Reduced Stress and Inflammatory Responsiveness in Experienced Meditators Compared to a Matched Healthy Control Group.” Psychoneuroendocrinology, vol. 68, June 2016, pp. 117–125, 10.1016/j.psyneuen.2016.02.013. Accessed 17 Feb. 2020.
Song, Yan, et al. “Mindfulness Intervention in the Management of Chronic Pain and Psychological Comorbidity: A Meta-Analysis.” International Journal of Nursing Sciences, vol. 1, no. 2, 1 June 2014, pp. 215–223, www.sciencedirect.com/science/article/pii/S2352013214000490, 10.1016/j.ijnss.2014.05.014. Accessed 24 Aug. 2020.
Workman, Edward A., et al. “Comorbid Psychiatric Disorders and Predictors of Pain Management Program Success in Patients With Chronic Pain.” Primary Care Companion to The Journal of Clinical Psychiatry, vol. 4, no. 4, 2002, pp. 137–140, www.ncbi.nlm.nih.gov/pmc/articles/PMC315482/. Accessed 24 Aug. 2020.
Zeidan, F., et al. “Mindfulness Meditation-Related Pain Relief: Evidence for Unique Brain Mechanisms in the Regulation of Pain.” Neuroscience Letters, vol. 520, no. 2, June 2012, pp. 165–173, 10.1016/j.neulet.2012.03.082. Accessed 7 Oct. 2019.
Sexuality and IBD
Dr Mary Zachos, pediatric gastroenterologist at McMaster Children’s Hospital, offered up some insightful advice for IBD patients, addressing some commonly asked questions in regards to sexuality and IBD.
Do IBD medications affect body image?
Most medications we currently use to treat IBD do not change how a person looks. However, corticosteroids are occasionally used and can cause temporary side effects, including weight gain, acne or increased hair growth.
Do certain medications affect sex drive?
They do not. However, some medications can decrease energy levels – as can active disease symptoms. Consequently, the desire for sex might be reduced.
Does an ostomy impact body image and sexual functioning?
Although an ostomy itself does not impact sexual functioning, having an ostomy or surgical scar can make a person feel even more insecure. Your healthcare team and ostomy nurse can offer sound advice to help you manage the ostomy apparatus during intimacy.
Are there any risks with respect to sex and IBD?
All individuals – whether they have IBD or not – take on certain risks when they have sex, including contracting a sexually transmitted infection (STI), becoming pregnant or making someone else pregnant. However, these can have greater consequences in people with IBD. For example, some IBD medications affect the immune system, and STIs can; therefore be
more severe in people with IBD. In addition, certain medications are not safe for fetal development and should be strictly avoided if there is any risk of pregnancy. Young women should also consider being vaccinated against HPV, a sexually transmitted virus that can increase the risk of cervical cancer.
Can a person with IBD have a normal sex life?
Just because you have IBD does not mean you cannot have a healthy sex life, you can! However, you might just not feel well enough to be interested in sex during flares. Some types of IBD can affect the area around the vagina or anal canal with a fistula or abscess, which can make sex uncomfortable or even painful. It can be beneficial to speak to your healthcare team about any discomfort or worries regarding sex.
Does IBD affect puberty?
Active IBD can delay puberty in the same way it can have effects on growth. In some people, the main manifestation of disease activity is its effect on growth and pubertal development, and gastrointestinal symptoms are minimal. Therefore, in addition to reviewing symptoms and having tests such as blood work, stool analysis, imaging and endoscopy/colonoscopy, an important part of monitoring IBD is keeping a close eye on pubertal development.
How should parents approach the topic of sex?
“A parent should aim to create open lines of communication and approachability about all aspects of life, including school, relationships and behaviours. This will make it easier to have the same openness about sexuality. This communication needs to begin in early childhood and continue in a positive, non-judgmental and trustworthy fashion, so your teen with IBD will feel comfortable approaching you, or a healthcare team member with questions about sex.”
Information from CDHF partner RobbiesRainbow
Diet & Lifestyle Changes
Date Written: 09-2020
This information is intended for educational purposes and is not intended to replace recommendations that have been provided by your Physician and Health Care Team. Healthy eating objectives for IBD include managing symptoms, ensuring and optimizing adequate intake, promoting healing, reducing complications and meeting other relevant personal needs.
There is no miracle cure for Crohn’s and ulcerative colitis, through a special diet, food combinations, or exclusions of select foods or nutrients. Individuals with IBD, including Crohn’s disease and ulcerative colitis may feel well, or ill during a flare-up, leading to variations in appetite and nutritional intake depending on the state of their IBD.
During a flare-up and even when feeling well, it is important to be well-nourished to support healing, build strength, reduce inflammation and optimize nutritional intake. If you feel ill during a flare-up, making effective changes to diet may potentially help you to manage symptoms.
You may find some improvements or worsening in your symptoms based on certain foods. Keep a diary, it is worth tracking food intake to try and determine possible symptom triggers. However, it is important to assess whether other factors like stress, hormones, level of sleep and physical activity contribute to worsening of symptoms rather than merely foods as the cause.
Take the time to track your symptoms in the CDHF app that can help you and your doctor see patterns in your activities and identify specific triggers for your symptoms.
Canada’s Food Guide is a tool that can be used to guide your meal and snack choices. Consuming a variety of vegetables and fruits, whole grains, lean meat and protein choices provides a range of vitamins and minerals that you need daily.
Aim to fill half the plate with a variety of vegetables and fruit, fill one-quarter of the plate with healthy whole grains like bread, unsweetened cereals, pasta, rice and quinoa. Fill the remaining quarter of the plate with protein, including lean meat, poultry, fish, eggs, soy, dairy and non-dairy fortified milk, yogurt and cheese.
If your appetite is low, consume small frequent meals and snacks to consume adequate intake and prevent malnutrition.
Consume adequate amounts of fluid intake to move wastes through your system and prevent dehydration.
- Follow the advice of your Physician and Health care team during a flare-up.
- Aim to consume a healthy diet.
- Restrict only the foods that make you feel worse.
- Do not try to limit intake to “rest your intestines”, as starvation provides an added stress to the body.
If your diet intake is inadequate due to poor appetite, reduced intake, or malabsorption and difficulty meeting nutritional needs, discuss strategies with your Physician and Registered Dietitian. Consuming small frequent meals and snacks, high-calorie foods, or supplements like Ensure or Boost may be beneficial.
Daily fibre intake and goals should be discussed with your Physician, especially for those with Crohn’s disease with strictures and at risk of a bowel obstruction.
Dietitian’s of Canada PEN Inflammatory Bowel Disease Practice Guidance Toolkit, 2020, does not recommend a high fibre nor a low fibre diet to help manage Crohn’s disease, either active or in remission, so it is best to maintain normal fibre intake.
Health Canada recommends Canadian women consume 25 grams of fibre/day and men consume 38 grams of fibre/day, though most Canadians are consuming about half that requirement.
Some people find fibre to improve their symptoms of constipation, yet others find fibre tends to irritate their symptoms during a flare. If you have concerns or questions about your fibre intake, consult your Physician or Registered Dietitian.
During a flare-up, protein needs are higher. Increase protein intake at meals, and with snacks, including meat, fish, poultry, soy and soy products like tofu, dairy and fortified non-dairy milk, yogurt and cheese, plain nuts and seeds and nut and seed butters.
Typical portion servings are about the size of a regular deck of playing cards, 2 tablespoons of nut butter, ¼ cup of plain nuts or 2 eggs.
Adults should consume 2-3 tablespoons of healthy fats in cooking and in foods throughout the day. Unsaturated fats like olive oil, avocado oil, omega-3 found in fatty fish like salmon, sardines, trout as well as plain nuts are all healthy choices.
Vitamin and Minerals
Some common nutrients of concern for adults with IBD, and select food sources containing the nutrients:
- Iron: red meat, fish, dark leafy vegetables, iron-fortified cereals
- Calcium: dairy products, almond and nut beverages, dark green vegetables, fortified soy
- Folic acid: fortified pasta, flour and noodles and dark green vegetables
- Niacin: meat, poultry, whole grains, enriched grains, milk
- Selenium: eggs, fish, poultry, pasta, nuts
- Zinc: shellfish, nuts, eggs, dairy products, poultry
- Vitamin B12: beef, fish, eggs, shellfish
- Vitamin C: strawberries, lemons, lime, orange, red pepper, mango
- Vitamin D: milk, fortified soy beverages and milk alternatives, salmon, fatty fish, margarine
- Vitamin K: leafy greens, asparagus, soybeans, broccoli
Source: Dietitians of Canada. 2019. PEN. Inflammatory Bowel Disease in Adults.
Certain medications (methotrexate and sulphasalazine) can increase the need for folic acid supplements.
Some individuals have increased nutrients needs, including calcium, iron, and vitamin D. Discuss your specific needs, including potential benefits of vitamin supplements with your Physician or Registered Dietitian. Regular screening for iron deficiency anemia may be advised.
Dealing with Flare-up Symptoms
- Rehydrate with plenty of fluids to replace losses. Consume 2 – 2.5 litres of fluid/day, including water, broth, sports beverages, diluted juices and weak tea.
- Avoid sugary sweet drinks, alcohol and caffeine-containing beverages like coffee, tea, colas, and chocolate beverages.
- Limit or avoid foods high in fat, high in fibre foods, and those containing lots of sugar.
- Your Physician may recommend rehydration solutions.
Gas and distension
- Limit foods that typically cause gas, avoid fried and spicy foods, beer and carbonated beverages, beans, peas, lentils, broccoli, cabbage, cauliflower, mushrooms, onions and whole-grain products.
- To limit gulping down extra air, avoid using a straw to drink liquids, talking while eating and chewing gum.
- Chew your food well.
You could temporarily remove one food from your diet at a time to see if your gas symptoms improve.
If you find some dairy products cause gas and bloating, it could be due to lactose. Some people, particularly during a flare-up, may become intolerant to lactose, the sugar in dairy products. A lactose-free diet may help to alleviate symptoms. Look for lactose on food labels and buy lactose-free dairy products. The lactose intolerance may be temporary. Some of the symptoms of lactose-intolerance are like a flare-up, so before altering your diet, discuss your symptoms with your Physician.
Do you need to avoid any food groups, gluten or lactose?
Unless you have symptoms to specific foods, do not remove them from your diet. Everyone is different, and what causes issues for one person may not have the same reaction for others. If you remove foods from the diet, make sure to check your tolerance to these foods from time to time, as symptoms can vary over time. Also, restricting foods can lead to extensive lists of foods excluded from the diet, which can increase the risk of nutrient deficiencies.
Low FODMAP diet
If a low FODMAP diet is advised by your Physician, consult with a Registered Dietitian who has expertise with the diet. This diet is meant to only be temporary for just a few weeks, then foods are added back into the diet systematically to expand nutritional intake. Following the low FODMAP diet for longer than a few weeks can have negative effects on the body. The FODMAPs are food for the microbes that reside in your intestine and provide health benefits. Staying on this diet can have negative effects on your microbiome (microbes). The low FODMAP diet may be effective in helping you, and your Registered Dietitian determine what foods potentially trigger your symptoms.
The Mediterranean diet is rich in plenty of vegetables and fruit, cereal, nuts, legumes, fish, olive oil, and low in saturated fat, meat and sweets. A 2020 study of patients with Crohn’s disease and ulcerative colitis on the Mediterranean diet for 6 months found a significant reduction in malnutrition parameters, body mass index, clinical disease activity, reduced inflammation, improved gut microbiota balance, and improved quality of life. The researchers reported that the Mediterranean diet is effective for IBD patients as part of a multidimensional approach.
No clinical trials have been reported on this diet with IBD patients.
Tempted to trial an exclusion diet?
Eliminating various foods and nutrients from the diet should be done in consultation with your Physician and Registered Dietitian. Removing foods from your diet can increase the risk of malnutrition, weight loss and nutrient deficiencies.
Probiotics have received increasing attention from patients and researchers. Probiotics are defined by WHO as “live microorganisms that, when administered in adequate amounts, confer a health benefit on the host”. However, the data are limited with respect to their efficacy for Crohn’s disease. The Canadian Association of Gastroenterology Clinical Practice Guideline for the Management of Luminal Crohn’s Disease notes that individual probiotics may prove useful, and further study is warranted.
World Gastroenterology Organisation Global Guidelines, 2017 provided the following recommendations for probiotics, which included specific probiotic strains and dosages.
“There is good evidence for the use of certain probiotics in preventing an initial attack of pouchitis, and in preventing further relapse of pouchitis after the induction of remission with antibiotics. Probiotics can be recommended to patients with pouchitis of mild activity, or as maintenance therapy for those in remission”.
“Certain probiotics are safe and as effective as conventional therapy in achieving higher response and remission rates in mild to moderately active ulcerative colitis in both adult and pediatric populations”.
“Studies of probiotics in Crohn’s disease have indicated that there is no evidence to suggest that probiotics are beneficial for the maintenance of remission of Crohn’s disease”.
Specific probiotic recommendations for IBD-C and IBD-UC are available in the Clinical Guide to Probiotics Available in Canada, 2020.
A prebiotic is defined as “a substrate that is selectively utilized by host microorganisms conferring a health benefit”. Prebiotics are frequently thought of as fibre, though not all fibres are prebiotic. Commonly known prebiotics are resistant starch, inulin, galactooligosaccharides (GOS), fructooligosaccharides (FOS), mannooligosaccharides (MOS) and xylooligosaccharides (XOS).
Small-scale prebiotic studies have been conducted, though further larger-scale trials are currently being planned.
Dietitians of Canada PEN Inflammatory Bowel Disease Practice Guidance Toolkit, 2020 recommends additional prebiotic and probiotic research with studies with larger numbers of participants targeting specific disease states (active, in remission and with IBS-like symptoms.
Provincial Call Centres with access to speak to a Registered Dietitian free of charge:
- B.C. (8-1-1)
- Alberta (811)
- Manitoba (1-877-830-2892) or (204-788-8248)
- Saskatchewan (1-833-966-5541) M-R, 10 – 4 pm CST
- Ontario (Telehealth Ontario) (1-866-797-0000)
- Newfoundland and Labrador (8-1-1)
Includes tips, recipes, meal and snack suggestions for healthy eating
First things first. Let’s go over the language of treatment options.
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 going 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 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.
Complications 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.
As mentioned, there is no cure for inflammatory bowel disease at the present time; however, there are effective treatments available that may control your disease and even place it into remission. Remission means that your symptoms disappear completely.
Medication(s) are chosen specifically for YOU based on your history and severity of disease. It is important you speak openly and regularly with your doctor so you can make the best decisions for your health – together.
Biologics and Biosimilars
What is a Biologic?
Biologic drugs (also called reference or originators) are medications made by using living organisms (such as yeast or animal cells) to produce complex proteins that are purified then administered to affect certain processes in the human body.
What is a Biosimilar?
A biosimilar is a drug proven to be highly similar to its copy, a reference biologic, and has been authorized for sale in Canada. Biosimilars can only come to market after the 20-year patient protection on a reference biologic drug has ended.
Are biosimilars the same as reference biologics?
No. Reference biologics and biosimilars are complex molecules made from living cells. Due to this fact, biosimilars are highly similar, but not identical versions, of their reference biologic drugs.
Biosimilars are NOT the same as generic drugs
Generic medications are exact copies of a brand-name drug. Generics contain the same chemical substance(s) as branded drugs and provide the same therapeutic effect. Biosimilars are similar to but not exact copies of a reference biologic. The difference lies in the inactive components within the product. Because biologics and biosimilars are made with living cells, and not chemicals, they are more complex and have a natural variability.
These slight variations exist within ALL biologic and biosimilar medications, including batches of reference biologics that have been on the market for years. Biologics and biosimilars must meet Health Canada’s safety, immunogenicity, and efficacy requirements.
As well, it must be developed and manufactured following the same strict quality requirements as any other biologic; therefore, delivering the same therapeutic benefits as its reference biologic.
In addition to medication to control inflammation, your doctor may recommend additional products to help relieve your symptoms, including antibiotics (for fever), pain relievers (for abdominal pain), antidiarrheals (to control diarrhea) and iron supplements (for anemia). Talk to your doctor about which medications are safe for you to take.
This has become a standard regime recommended by GI’s as concomitant therapy.
Studies have found that, in some cases, probiotics may help to improve symptoms of IBD. Probiotics are live microorganisms that, when taken in adequate amounts over sufficient time, may provide a health benefit. They are natural, ‘healthy’ bacteria that may help with digestion and offer protection from harmful bacteria in the intestines.
Probiotics are not medicine. They are available to purchase as capsules, tablets or powders, and can also be found in some fortified yogurts and fermented milk products. However, not all probiotics are the same. Although many products claim to have benefits, only two probiotics formulations – E. coli Nissle and VSL#3 – have been shown to be effective in ulcerative colitis and pouchitis.
Ask your doctor or pharmacist if one of these formulations may be right for you. It is important to take the probiotic in the dose and duration recommended by the manufacturer to achieve the best results.
Surgery for IBD
People with both Crohn’s disease and ulcerative colitis may need surgery at some point in their lives. Surgery is less common in ulcerative colitis than in Crohn’s disease and is often performed when ulcerative colitis is no longer responding to medical treatment.
Unlike Crohn’s disease, surgery will cure ulcerative colitis by removing all diseased bowel. With the colon being completely removed, the patient may require an ileostomy (bag outside the body to collect waste) or a second operation to form a new rectum (called a pouch procedure). Despite all of the advances in medical research over the last several decades, we still do not know the cause of IBD and much further research is required.
We had compiled a number of patient stories of when they were originally diagnosed and what they do to manage their day-to-day. Please keep in mind everyone is different when it comes to IBD.
- Emma, Effie and Katie share their experiences, in a campaign called #ImagineUC Differently
- Living Positively with Ulcerative Colitis: Webinar
- My first surgery: life changed forever
- Right hemicolectomy: My experiences. What’s next? Where do I go?
Am I going to get cancer because I have IBD?
People with IBD are at an increased risk of developing colon cancer. Having regular colonoscopies will help identify polyps that could potentially develop into cancer.
Does diet affect (IBD)? Maybe move this up to the diet section?
Diet alone is not effective in treating Crohn’s disease or ulcerative colitis. However, it is important patients with IBD have a well-balanced diet. Calcium is important to protect bones. Fibre may not be tolerated during flare-ups. Certain vitamins (for example, B12) may be required. Selected patients may sometimes be helped by a registered dietician.
How is IBD different than IBS?
Although both illnesses can be seriously debilitating, there are several primary differences between Inflammatory Bowel Disease (IBD) and Irritable Bowel Syndrome (IBS). IBD is an autoimmune disorder that causes swelling and ulcerations (sores) in the bowel. IBS involves problems with motility (how the bowel moves contents through our intestines) and sensitivity (how the brain interprets sensations in the bowel). Symptoms of IBS may wax and wane and possibly disappear altogether, whereas IBD is a chronic condition.
How can I tell if my treatment is working?
For some people, IBD symptoms will significantly improve within a short time after starting medication or making lifestyle and dietary changes. For others, finding relief from symptoms is a slow process, and it may take longer for a definite improvement to be noticed. It is important for you and your doctor to work together to determine what triggers your symptoms and to find the right treatment to manage your symptoms effectively.
How can I prepare for an appointment with my GI to discuss my ulcerative colitis or Crohn’s disease?
Good communication with your doctor is an important part of effective management of a gastrointestinal disorder such as IBD. Before your appointment, take the time to keep a symptom journal that can help you and your doctor see patterns in your activities and identify specific triggers for your symptoms. Include the following information in your journal:
- Write down the symptoms that are bothering you and for how long you have had them.
- Write down key personal and medical information, including any recent changes or stressful events in your life.
- Make a list of the triggers (food, stress, activity) that seem to make your symptoms worse.
- Make a list of medications you are taking, including the conditions you take them for. Also, note if any of your medications seem to affect your symptoms.
- Talk to your family members and find out if any relatives have been diagnosed with IBD or another digestive disorder.
Also, create a list of questions to ask your doctor during your appointment. Specifically, you may want to ask your doctor questions such as:
- What do you think is causing my symptoms?
- Are there other possible causes for my condition?
- What diagnostic tests do I need?
- Do these tests require any special preparation?
- What treatment approach do you recommend trying first?
- If the first treatment doesn’t work, what will we try next?
- Are there any side effects associated with these treatments?