During transition, you have to become responsible for your own health and healthcare decisions.
What does it mean to be “responsible for your own health”?
Being responsible for your health means that it is up to you to do all the things that help keep you well.To Top
You keep track of, arrange transportation for, and attend all medical appointments – doctor’s appointments, endoscopy appointments, and blood tests. If you are not able to attend an appointment, you should call in advance to cancel or re-schedule. We understand that life is busy and things change, but if you cannot attend you should call so that someone else can be booked into that appointment time. The earlier you call to change, the better.To Top
You know your medical history and monitor for symptoms of your disease – this means you need to listen to your body and know what symptoms could mean that your disease is flaring or is active. Depending on your disease, your symptoms may be different. Common symptoms of a “flare” include: abdominal pain or cramping, diarrhea, bleeding, fatigue and weight loss.To Top
Knowing what to do or who to call when you are having symptoms of a disease “flare” is VERY IMPORTANT. The first step is to tell someone and ask for help.
Who to call/What to do:
- Call the IBD Nurse – many IBD specialists will have a nurse you can talk to about your symptoms (this is similar to pediatrics). It is important for YOU to call – they will listen to you and ask questions about what you are experiencing. Often they will ask you to get blood and/or stool tests done to assess how sick you are. The nurses are only available on weekdays.
- Call your IBD Specialist/Gastroenterologist to make an appointment. If you are sick, you need to let the office know so that they can book you sooner.
- Call your Family Doctor or General Practitioner to make an appointment – tell the office that you think your IBD is flaring.
- If you are really sick or cannot wait until the office is open (e.g. over a weekend or holiday season), go to emergency. It is best to go to the hospital where your doctor works, but we know that this is not always possible.
Take your medication as prescribed (see medication section).To Top
Pay for your medications or find out about insurance coverage – Since the majority of patients with IBD are on some type of medication to get and/or keep them well, it is important that you are able to pay for your medications. Most patients have an insurance plan(s) to pay for their medications. Depending on your age and your student status, you may or may not be covered under your parents’ insurance plan. It is your responsibility to know. It is important to look into this BEFORE you turn 18, as you may need to purchase or apply for extra insurance. If you do not have coverage, each province has insurance that you can apply for to help cover the cost. In Alberta, it is Non-Group Blue Cross. You will need to pay the premiums associated with these plans, but often the premium is less expensive than the cost of the medication if you do not have an insurance plan. If you are on a biologic, a support coordinator can help you with the insurance transition.
Make decisions about your health – One of the ethical principles of medicine is the right to autonomy. Autonomy refers to the right to refuse or choose your treatment. You have a right to decide for yourself, provided that you have the capacity to understand the risks and benefits and have the ability to make the decision. When you are a minor, your parents are usually the ones who make decisions regarding your health. An example of this is providing consent for a procedure, like a colonoscopy. As a minor, your parents decide and sign the legal consent form and you only have to agree (also called “assent” – we wouldn’t do it without your agreement). As an adult, you will be asked to sign the consent form for any procedures.To Top
Discussing your Health
During appointments, you talk about any health issues you are experiencing – It might be helpful to jot down questions or notes as things come up between appointments, so that you remember to ask when you see the gastroenterologist. Speaking up during appointments also means that you answer all of the questions asked by the nurse or gastroenterologist, on your own.