Back to school is very challenging time for both kids and parents. There are lots of adjustments and preparations need to be made so that everyone feels comfortable and has smooth tradition to new routine. As children grow they meet many people every day, involve in various activities and face daily physical and emotional tasks. There are lots of things happen in school and family life. For children living with chronic conditions every day is a real challenge.
Last week we attended Whiteboards and Washrooms – Managing Chronic Conditions in Kids event to learn more about inflammatory bowel disease (IBD). IBD is a group of conditions that involve chronic inflammation of all or part of the digestive tract. Specifically, the two main types of IBD conditions are known as Crohn’s disease and Ulcerative Colitis. Children with IBD may suffer from a wide range of symptoms, ranging from mild to severe. They include abdominal pain, diarrhea, fatigue, vomiting, nausea and other. While it is believed that genetics and environmental factors are the reasons of IBD, having more information about these conditions is very helpful.
After listening to Dr. Thomas Walters, gastroenterologist at SickKids Hospital, and Kate Murray, founder of Robbie’s Rainbow, I feel more knowledgeable and comfortable about IBD. Children with IBD want to know when they will be "normal" like every other kid, but the rates of IBD grow every year becoming new normal in our society. Having chronic conditions means you have to take care of them every day. Parents, families, siblings, doctors, teachers and community are also need to be supportive and help children living with IDB. Parents play a vital role in helping kids managing IBD conditions and communicating with the school and teachers how they can support the child. While no one likes "poo talk" and most children feel embarrassing about it, it is important to understand that children need help and it all can be manageable if communicated properly. Kids can't catch IBD from someone, like a cold, but the disease may be genetic or based on environmental issues.
Children with IBD need have more absence days because they go often to doctors and tests, they need a special diet to manage their digestive tract, they need to go to the washroom more often, and many other things, which can be incorporated into school day to day life so that children feel comfortable and get positive experience at school and out of home.
There is no treatment to chronic conditions but they can be reduced to the minimum so that every child with IBD feels better and focus on other tasks in life. The major target is to avoid extreme measures like hospitalization and surgery and improve the quality of life.
It takes a village to raise a child. Parents, teachers and communities should communicate effectively how to make every child feel comfortable at school and other places. Parents play a vital role as they are first who come to support the child. There is never "over care" for the child in this case. The more we support the more child feel comfortable and eager to live "normal life". Parents are encouraged to be involved in everyday activities, come to school for lunch time and after school. When talking about the disease, children need to express how they feel and explain it to teachers, friends and coaches like "I have a sore tummy. The Doctors are helping me". My cousin had a urinary incontinence, it was very upset for her. She has a quite stressful time at school until her dad developed a strategy how to behave in different situations, what to say to other people and how to manage the condition. Nowadays there are many supportive groups online to discuss the conditions, how to help kids at school, families to discuss everything from symptoms, activities to medications and menu. There are also great apps to help children manage IBD like myIBDApp or GI Monitor to track food intake, symptoms, pain areas and stress patterns.
At the event we were also happy to meet Kate Murray, founder of Robbie’s Rainbow and her son Robbie. She shared her experience raising a child with the chronic condition IBD, the challenges she faced and how she and Robbie have overcome them. I was impressed how Kate manages a huge load of responsibilities and very patient and supportive. She is a good example and offers great resources for families dealing with IBD. Robbie’s Rainbow helps children access treatments, diagnostic testing and builds educational resources to meet the entire needs of family and child living with Inflammatory Bowel Disease.
Canada has some of the highest rates of IBD in the world, with more than 10,200 new cases diagnosed each year. It is estimated that 1 in every 150 Canadians has IBD. IBD can cause some inconvenience and even hospitalization, but there are ways you can manage the disease and have a healthy and active lifestyle. Visit Robbie’s Rainbow for resources and more information on IBD, including Crohn’s disease, ulcerative colitis & how you can help children living with IBD.
Dr. Thomas Walters is a gastroenterologist at SickKids Hospital, and the co-director of the SickKids’s Paediatric Inflammatory Bowel Diseases program. Dr. Walters will shed light on when to see a physician, what to ask, how to approach new treatments, and how to talk to your child about chronic conditions.
Robbie’s Rainbow is a registered charity with a sole focus on childhood Inflammatory Bowel Disease (IBD). Our charity provides access to medical treatments, procedures and care not covered by private or public health plans and we build educational resources for IBD children and their families.