Navigating the Health Care System

It's not just you and your doctor. It's a little more complicated than that.

Winning half the battle is about knowing the rules of the game. Having had close to zero exposure to the health care system prior to my UC diagnosis was a big disadvantage. Learning how to navigate left me more exhausted and defeated on top of the struggles with my UC symptoms. These are some of the things I wish I knew earlier.

Family Doctor: In Canada, you NEED one. Not because they have the medical knowledge to address all your health needs, but because they are the single point of contact for everything. They are like the hub of the wheel. Any referals go through them, any test results go back to them.

GI Doctor: They specialize in gasteroenterology, but not all GI doctors are the same. They specialize in their own areas of interests. Not all patients who see the GI have UC. A lot of their patients are old people. Some may not be that experienced in treating UC. It's okay to shop around for your doctors. Not everyone has the same way of treatment, communication style. You are going to need a GI for your life, so you better get along with them. No doctor will know your body better than you do. Do not expect them to empathize and understand. Speak up, vocalize and be proactive about your concerns. It's especially hard when you are the most vulnerable, but a good GI makes all the difference. They have hundreds of patients to treat, and you are just patient xxx. Do not take anything they say too personally. It's hard to hear all the details. When I was diagnosed, all the information I had from my doctor was a prescription and the word colitis. I played down my symptoms because I didn't want to scare myself.

Other specialist doctors: If you develop complications that may or may not be related to UC. You must go back to your family doctor for them to refer you to another appropriate specialist. This specialist may or may not work with your GI doctor on your conditions, hence the importance of a family doctor. But always know all the dosage and names of the medications you are taking. And the dates and results of any medical exams you have had. Keep in mind the referral process may take up to few months. If your symptoms worsen. my personal suggestion is to go to the ER and let them know of your UC conditions and any complications and see if they can put in a referral to a specialist. Be prepared there will still be a wait time from a ER referral but in many cases it will be faster than a referral from your family doctor.

ER visits: The goal is to keep your body in remission so we avoid ER visits. But sometimes flare ups and complications are unavoidable. Please let the registering nurse know that you have UC and they will prioritize accordingly. The ER is not the best place to treat your flare ups or any chronic conditions.

Insurance Companies: Know your coverage! What your deductibles are. What percent is covered. If there is a yearly maximum. Even though Canada does have a "free" health care system. Many services are not covered. Including physio therapy, osteopaths, natural-path, massage therapist, psychologist, chiropractor, etc. These alternative therapies can be beneficial in achieving full remission.

Drug Coverage: Drugs are not covered in Canada. Biologic drugs that have been very successful in treating colitis can costs upwards from $1000-$3000 a month. Asacol for me costs around $300-$400 for a 3 month supply. It is very important to figure out what your drug plan is through work. And if you are unable to work there are programs such as the Trillium drug plan in Ontario that the gov't offers for people with low income. Sad and unfortunate fact about drugs are that, the more effective and helpful a drug is, the more expensive it costs. And the more dangerous a drug is, the cheaper the costs. Ex. Prednisone is very cheap $20 compared to a biologic drug such as Humira. Doctors are very reluctant to put patients on biologic simply because of the costs of the drugs and the life long dependency. The catch 22 of you have to be well enough to work so you can have drug coverage to stay healthy. Be careful when selecting the drug benefits that are offered by your company. In many cases, the more expensive higher coverage plans will offer benefits like automatic billing which saves you the trouble of dealing with the pharmacy and drug company.

Disability Insurance: They are like debt collectors. They are not your friends. Their sole purpose is to get you back to work as soon as possible so they do not have to pay for your disability leave. Do not think they are your friends. It's normal to feel harassed by them. They will call you every week. Stay strong.

Pharmacy: Your pharmacy is your point of contact for your medical supplies. In many cases medicine such as Asacol are not always on stock. You may want to stock on your medication well in advance or call beforehand to make sure they have the medication in stock before making a trip there. Biologic drugs such as Humira will not be available in your pharmacy and are scheduled to be delivered to your house or the closest pharmacy nearby. They are also the place to dispose your recycled syringe or pens.

Biologic drug companies: They supply you with your expensive biologic drugs. They are a separate entity that has a team dedicated to serving you including delivery, nurses, personal care specialist. There are some biologic drugs that you will need to go to a clinic to be administered by a nurse through IV such as Remicade. Know their contact details.