Your Child Can Live A Healthy Life With IBD Canada

Blackboards and Bathrooms – A comprehensive resource to help teachers support the education of children with IBD – Canadian Digestive Health Foundation

Your Child Can Live A Healthy Life With IBD Canada

Blackboards and Bathrooms was developed by the Canadian Digestive Health Foundation in collaboration with Robbies Rainbow

Inflammatory bowel disease (IBD) is an umbrella term for two disorders:Crohn’s disease and ulcerative colitis. IBD causes inflammation (redness and swelling) and ulceration (sores) in the digestive tract.

Those living with the disease frequently experience the urgent, unexpected need to have a bowel movement and often require immediate access to a bathroom. The disease is unpredictable, embarrassing, debilitating and stressful.

Students with inflammatory bowel disease (IBD) may need additional support.

The Canadian Digestive Health Foundation (CDHF) has created Blackboards andBathrooms, a guide to provide educators with the resources they need to supportstudents living with IBD. Our goals are to help minimize the burden of teaching

students with IBD and minimize the negative impact this disease has on a student’s academic performance and school experiences.

Blackboards & Bathrooms provides practical strategies and tools to help students with IBD thrive in your classroom. As a teacher, you have a special opportunity to enrich the lives of students living with IBD. We’re hoping this guide will ease the way for you and your students.

The Impact of Inflammatory Bowel Disease

Inflammatory bowel disease is chronic and inconsistent. Symptoms can vary dramatically from wellness one week to illness the next. Students with IBD may have flares (when symptoms get worse) that occur unexpectedly and with alternating periods of remission (when they are well). Your student may not appear ill even when the disease is active.

Frequent diarrhea can lead to weight loss, poor growth, dehydration, malnutrition, and anemia. And, medications for IBD can affect mental functioning and mood in highly variable ways.

IBD symptoms, clinic appointments and tests may also interfere with punctuality, attendance and engagement at school.

If students don’t have the opportunity to catch up, they may become frustrated and lose interest during learning activities and risk falling behind.

All of these factors may lead to day-to-day fluctuations in energy, concentration, participation, and achievement. While every day is different for people with the disease, we have tried to summarize some common issues to help you understand what these children live with.

Students with IBD may suffer from:

  • frequent diarrhea/ bloody diarrhea
  • abdominal pain, cramping and urgency
  • nausea and vomiting, decreased appetite
  • weight loss and anemia
  • malnutrition, fatigue
  • poor growth, pubertal delay
  • joint pain, joint stiffness
  • skin afflictions

Students with IBD often miss out on school experiences because:

  • they may be unable to participate fully in activities requiring strength or stamina, such as physical education or extracurricular sports
  • medications can have side effects that impair concentration and well-being
  • they require regular clinic visits and may require hospitalization for surgery and other health care related reasons
  • their overall wellness is hindered by the disease

When attending school, students may struggle with:

  • fatigue and reduced energy levels
  • impaired focus
  • impaired mood
  • social discomfort or inhibition, emotional withdrawal, depression

Privacy in the school and classroom

Certain people at school will need to know your student has inflammatory bowel disease. You, the principal, and resource teacher will be part of an inner circle. Staff members should also be made aware of the student’s need to immediately access the bathroom. The student should always carry the CDHF IBD All Access Pass with them.

Decisions about whether to disclose the illness to schoolmates are best left to the student. Some students are eager to share information about their illness while others prefer complete privacy, and still others fall somewhere in between these two extremes.

Helping classmates understand

To help build a better understanding about inflammatory bowel disease and better relate to the IBD student, you can share some basics with your class. First, be sure to ask your IBD student for permission, to be sure they are comfortable with your doing so.

Here are some helpful facts:

  • Inflammatory bowel disease is not contagious so there’s no risk of catching it
  • Students with IBD may need to go to the bathroom often and urgently
  • The disease tends to flare up and quiet down so children may feel well one day and terrible the next
  • Students with IBD may sometimes find it hard to eat
  • Students with IBD may be on a special liquid diet where they are unable to eat normal food for up to 8 to 12 weeks. They may also have a tube inserted through their nose into their stomach to deliver a special liquid diet
  • Students with IBD may have to miss school, sometimes for long periods of time
  • Medications used to treat IBD can make the student look puffy, trigger or worsen acne, and cause mood swings

Returning to School After a Flare

While school can sometimes be a challenge, especially during flares, going to school helps the child with inflammatory bowel disease regain a sense of normalcy and provides a lifeline of hope for the future. The child’s physician or parent should provide the school with a summary of what to expect.

Depending on the student’s academic performance before and during the absence, the resource teacher may recommend setting up an IEP meeting that includes faculty, administrators, special education personnel, and parents.

IBD All Access Pass

Students living with inflammatory bowel disease need immediate access to a bathroom. Every student in your school with the disease will have their own CDHF IBD ALL ACCESS PASS. Teachers and administrators need to understand that a child who shows this pass is not to be questioned or penalized.

Please post a copy of the pass along with the student’s photograph on staff information board(s) to ensure all staff are aware of the child’s disease and need for immediate bathroom access.


Your Child Can Live A Healthy Life With IBD

Your Child Can Live A Healthy Life With IBD Canada

You are not alone
Inflammatory bowel disease (IBD) is an umbrella term for two disorders that cause inflammation and sores in the digestive tract: Crohn’s disease and ulcerative colitis.

Canada has one of the highest rates of pediatric IBD in the world. Most alarming, the number of new cases of Crohn’s disease in Canadian children has almost doubled since 1995. But there is support to help you.

Crohn’s and Colitis Canada has local chapters across the country so you can connect and share your experiences.

Early detection is important
IBD, and particularly Crohn’s disease, are progressive disorders. Research has shown that the earlier the disease is treated, the better the long-term outcome.

“Children will have IBD for their full lives, and the disease is more extensive in children than in adults, affecting longer segments of their bowels. We need to intervene early with effective medications in order to change the course of the disease and prevent complications later in life,” says Dr.

Eric Benchimol, Pediatric Gastroenterologist, Children’s Hospital of Eastern Ontario IBD Centre.

“Untreated inflammation of the bowel will also affect the child’s growth (causing them to be shorter) and bone development (causing osteoporosis).  Once a child is beyond puberty, they won’t grow anymore.

Beyond the age of 25, bone development no longer occurs.

Therefore, we have a very limited window of opportunity to intervene, eliminate the inflammation of IBD, and prevent a child from being stunted or having osteoporosis later in life,” explains Dr. Benchimol.

Talk to your child’s doctor
It’s a good idea to take a list of questions and concerns to your child’s doctor appointment. Ask about:

• Your child’s growth and bone health
The doctor should be tracking your child’s height, weight, and body mass index (BMI), and can provide information about how to prevent malnutrition.

• The cumulative effects of steroids
Steroids are used short-term to rapidly reduce inflammation and control acute flares.

The long-term use of steroids is not recommended as they can be associated with many side effects.

It is important to let your child’s gastroenterologist know if your child has needed multiple doses of steroids to help with symptoms as it may be a sign that your child’s disease is not under control.

• The long-term considerations for living with a chronic illness
Studying abroad and travelling can be done-you and your child simply need to learn strategies to make it all possible.

Help your child thrive in school
School can be tough for any child but school for children with IBD is even more difficult.  Doctor’s appointments, debilitating and embarrassing symptoms, side effects from medications and, fatigue can threaten their academic success.

  However, the Canadian Digestive Health Foundation and Robbie’s Rainbow recently joined forces to create Blackboards and Bathrooms, a new resource to helps educators better understand IBD.

It highlights how symptoms and treatment can impact health, behaviour and academic performance and offers suggestions to help students with IBD thrive in the classroom – and life.

Apply for a post-secondary scholarship
Unfortunately, too many students with IBD are forced to delay completing college or university because of their disease.

The AbbVie IBD Scholarship Program awards ten $5,000 scholarships annually to Canadian post-secondary students of any age living with Crohn’s disease or ulcerative colitis. This program eases some of the financial burden and empowers Canadians with IBD to live their lives to the fullest.

Both parents and students can benefit from watching the Youth Webinar Series, presentations that aim to improve the lives of young people living with IBD.

Learn More!
Check out these useful IBD resources for families:

Crohn’s and Colitis Canada provides helpful information, videos, events and webinars on diet and nutrition, travelling, and more.

The Canadian Digestive Health Foundation empowers individuals to take control of their health. Free web seminars, videos, education guides and more on the disease, treatment options and how to live positively.

The Gastrointestinal Society has articles, videos, infographics, lectures, and more on all diseases and disorders of the GI tract. Contact them to get involved in health care advocacy and for printed resources, including pamphlets and the Inside Tract® newsletter.

The CHEO IBD Centre shares helpful information, events and resources for parents and kids, as well as news about IBD research.

AbbVie IBD Scholarship Program, brought to you by Crohn’s & Colitis Canada, awards ten $5,000 scholarships annually to Canadian post-secondary students of any age living with Crohn’s disease or ulcerative colitis.

Blackboards and Bathrooms helps educators understand the impact of IBD symptoms and treatments so students thrive and reach their academic potential.

You, Me and IBD is an educational magazine which features a variety of topics on IBD for children, teens and parents. The magazine is created by Robbie’s Rainbow, a children’s charity dedicated to improving the quality of life of children living with Crohn’s disease and ulcerative colitis.

My IBD Passport is a free, simple-to-use app that empowers people with IBD to better manage their disease. Parents can use the app to help their child track appointments, medication and test results; store physician contact information; and even export a PDF report to share with their child’s health care team.


What To Expect with Crohn’s Disease

Your Child Can Live A Healthy Life With IBD Canada

You have Crohn’s disease. Maybe you’ve had it for a long time, or maybe you’ve just been diagnosed. You’ve heard and read a lot about it, but you don’t really know what to expect.

The first thing to do is ask your doctor. He can help you understand your condition and provide answers to your questions. It’s a good idea to learn all you can about it.

Crohn’s disease is a type of inflammatory bowel disease. That means that your body’s immune system attacks and damages your bowel or gastrointestinal system.

It’s a chronic, meaning long-term, condition that gets in the way of your body’s ability to take in important nutrients. It can also affect the way you digest food and get rid of waste.

Crohn’s can involve any part of your gut. But the ileum, the last part of your small intestine, is most commonly affected.

Because of inflammation, you might have some of these symptoms:

  • Diarrhea or frequent, watery bowel movements
  • Urgent bowel movements
  • Trouble having bowel movements
  • Bleeding from your rectum
  • Pain or cramping in your abdomen, or belly
  • Weight loss
  • Tiredness

Other parts of your body, your joints, skin, or eyes, can be affected, too.

Symptoms can come and go. You may have periods of time when you feel fine. These times might be followed by flare-ups of the condition.

Remission also is possible. With Crohn’s, remission is sometimes thought to take place when symptoms go away and ulcers in the colon begin to heal.

You should be able to do just about anything. But you may need to make some adjustments.

Each person is different. Your Crohn’s disease might:

  • Affect a large part of your gastrointestinal system or only a small part
  • Be mild, moderate, or severe
  • Go long periods without symptoms or flare-ups
  • Be fairly easy to control, or it may be very difficult
  • Go into remission

Depending on the way Crohn’s affects you and your ability to manage it, you may have some challenges.

Your symptoms. Although most people with Crohn’s are able to have active lives, symptoms and flare-ups may cause you to miss work, school, or other activities – even if you stick to your treatment plan. 

Your day-to-day activities. You may want to plan your activities with your Crohn’s in mind. For example, know where the closest bathroom is.

Your diet. Stay away from some foods if they make you feel worse. For instance, if milk products or greasy foods cause diarrhea, don’t eat them.

Your mood. Crohn’s disease, other chronic conditions, may affect your mood. You may feel more stressed or depressed at times. You may have pain, which also affects your emotions. If your condition starts to get to you, look into seeing a counselor and joining a support group.

If you’re female, Crohn’s could affect your ability to get pregnant. If it isn’t well-controlled, it may cause problems once you are pregnant. Your doctor may recommend a C-section if you have certain complications.

Crohn’s causes two types of complications:

  • Local, which involve the intestinal tract
  • Systemic, which affect your entire body

Local complications of Crohn’s include:

  • Abscess: This pocket of pus results from a bacterial infection. It can form on your intestinal wall and bulge out. Or you might get one near your anus that looks a boil. You’d notice swelling, tenderness, pain, and fever.
  • Bile salt diarrhea: Crohn’s disease most often affects the ileum, the lower end of your intestine. This part usually absorbs bile acids, which your body creates to help it absorb fat. 
  • Fissure: Painful tears in the lining of the anus. They can cause bleeding during bowel movements.
  • Fistula: Sores or ulcers can turn into openings that connect two different parts of your intestine. They can also tunnel into nearby tissues (bladder, vagina, skin).
  • Malabsorption and malnutrition: The disease affects your small intestine, the part of your body that absorbs nutrients from food. After you’ve had it for a long time, your body may no longer be able make the most of what you do eat.
  • Small intestinal bacterial overgrowth (SIBO): Your gut is full of bacteria that help you break down food. When this happens higher up in your digestive tract than normal, you can get gas, bloating, belly pain, and diarrhea.
  • Strictures: These narrowed, thickened areas of your intestinal tract result from the inflammation that comes with Crohn’s. They can be mild or severe, depending on how much of your intestine is blocked. Symptoms include cramping, abdominal pain, and bloating.

Systemic complications are often called extraintestinal. Some of the most common ones include:

Arthritis: Joint inflammation — which leads to pain, swelling, and a lack of flexibility — is the most common complication. There are three types of arthritis that sometimes come with Crohn’s:

  • Peripheral: This type affects large joints in your arms and legs, your elbows, knees, wrists, and ankles.
  • Axial: This type affects your spine or lower back (the doctor will call it your sacroiliac joint).
  • Ankylosing spondylitis: This more serious type of spinal arthritis is rare among people with Crohn’s, but it can happen. Besides causing arthritis in your back, it can lead to inflammation in your eyes, lungs, and heart valves.

Bone loss: Medications steroids can lead to bone loss, a condition known as osteoporosis. They can:

  • Stop your body from absorbing calcium, which your body needs to build bone
  • Make your body get rid of calcium when you pee
  • Boost production of cells that break down bone
  • Lower the number of cells that help form bones
  • Lower your body’s output of estrogen. Estrogen also helps build bone.

The proteins that cause inflammation change the pace at which old bone is removed and new is formed.

Vitamin D deficiency. If your body can’t absorb vitamin D because of Crohn’s damage to the small bowel or a small bowel resection, you’re less ly to be able to absorb calcium and make bone. 

Crohn's may also affect your body's ability to absorb other fat-soluble vitiamins, iron, and copper. 

Skin problems: These are the second most common systemic complication. Those most often linked to Crohn’s disease include:

  • Erythema nodosum: These small, tender, red nodules usually show up on your shins, ankles, and sometimes your arms.
  • Pyoderma gangrenosum: These pus-filled sores often follow an injury or other skin trauma. They often appear on your legs but can show up anywhere.
  • Skin These small flaps of skin are common in people with Crohn’s, especially around the anus or hemorrhoids.
  • Mouth ulcers: You might hear them called canker sores. They form between your gum and lower lip or along the sides and bottom of your tongue.

Eye problems: Over time, the inflammation from Crohn’s, or sometimes the other complications that come with it, can affect your eyes. Common conditions include:

  • Episcleritis: Inflammation of the area just below the conjunctiva (the clear tissue that covers the inside of your eyelids and the white of your eye) is the most common complication of Crohn’s. It can affect one eye or both. You’ll notice pain, itching, burning, and intense redness, but it won’t hurt your vision.
  • Scleritis: This condition causes a constant pain that gets worse when you move your eyes.
  • Uveitis: This is a painful inflammation of the uvea, the middle layer of your eye. It can cause blurry vision, light sensitivity, and redness.

Kidney problems: These organs can be affected by Crohn’s because they play a role in processing waste and are near your intestines. Potential issues include:

  • Kidney stones: They’re a common problem with Crohn’s because your body has a hard time absorbing fat. It binds to calcium and leaves a salt called oxalate that gets absorbed into your kidneys and can turn into stones.
  • Uric acid stones: These kidney stones form due to dehydration and a process called metabolic acidosis in which the balance of acids and bases in your blood gets thrown off. 
  • Hydronephrosis: This happens when the ileum (where you small intestine meets the large) swells from Crohn’s and puts pressure on your ureter, the tube that carries urine from your kidney to your bladder. When urine can’t drain the way it should, your kidney swells and scar tissue can form.
  • Fistulas: In addition to forming within your intestines, fistulas can also develop between the intestine and other organs, the bladder or ureter.

Liver problems: Your liver processes everything you eat and drink. It can get inflamed as a result of Crohn’s treatment or the disease itself. You’re only ly to notice low energy and fatigue unless you develop a more serious problem. Among the most common issues:

  • Fatty liver disease: When your body doesn’t process fats as well, they can build up in your liver. Steroids can help.
  • Gallstones: Your gallbladder stores bile, a liquid that helps your body dissolve fats. When Crohn’s affects the terminal ileum (where your small intestine meets the large intestine), it can’t process bile salts, which help cholesterol dissolve in bile. When that happens, the cholesterol can form into stones that block the opening between the liver and the bile duct, which sends bile down to your intestines.
  • Hepatitis: Crohn’s disease can cause chronic (long-term) liver inflammation and primary sclerosing cholangitis.
  • Pancreatitis: Inflammation of the pancreas can result from gallstones and from medications. It can cause pain, nausea, vomiting, and fever.

Physical development problems: Crohn’s can start at any age. When kids get Crohn’s, parents are ly to notice:

  • Growth failure: Kids with Crohn’s are ly to be shorter and weigh less than those without. They may stop getting taller before symptoms start.
  • Delayed puberty: Kids with Crohn’s are ly to start puberty later than their friends. Causes include malnutrition and lower fat mass, and interactions between proteins that cause inflammation and the endocrine system, which governs hormones.

Most people with Crohn’s disease will have periods of disease activity followed by periods of remission.

Doctors say if these things apply to you at diagnosis, your Crohn’s may be more severe if you:

  • Are younger than 40
  • Have perianal or rectal disease
  • Are taking steroids first thing
  • Smoke
  • Have a low education level

Some general facts:

  • A small number of people will go into a long remission right after their first diagnosis.
  • Many will get strictures or penetrating disease about 10 years after disease starts. Most will need surgery.
  • Up to 80% of people with Crohn’s will be hospitalized at some point.
  • Most people have symptoms that come and go, but a small number will either have continuous, active disease or prolonged remission.
  • About half the people in remission who have surgery will have a recurrence at the 5-year mark.
  • Some people have a more aggressive form of the disease that causes recurring obstructions or perforations. These people will need more surgery.

There are a lot of things to consider, the fact that Crohn’s affects everyone differently, and no two people have the exact same level of medical care.

But doctors estimate that higher odds of death from Crohn’s range from zero to five times that of people who don’t have it.


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