name my diagnosis.
Tip: If you are uncertain about your diagnosis, you can ask your caregiver or healthcare team to help you create a 3-sentence summary to help you describe your medical history and needs
explain my disease.
Tip: You can ask your caregiver or healthcare team to explain your medical condition using words you will understand.
fill out a medical history form, and list my allergies.
Tip: You can write down the name of your diagnosis, medications you are taking and any allergies you have and keep this information in your wallet, bag or on your phone.
name my medications past and present.
Tip: At your next medical visit, you can review your past and present medications with your healthcare team and ask them to share a list of your medications.
take my medications, at the right time, using the correct amount (dose).
remember to refill prescriptions on my own before running out.
Tip: You can use apps (e.g. Lyfe MD) to help you keep track of your prescriptions and when to refill them. See the Resources page for more information or ask your healthcare provider if there are drug-specific apps to help you keep track of your medications.
the side effects I might have from my medications.
Tip: At your next medical visit, you can ask to your doctor or nurse to review the side effects you might have from your medications.
manage what to do if I am having a bad reaction to my medications.
how to describe my symptoms to my healthcare team.
Tip: At your next visit, you can ask your caregiver to step out of the room for part of the exam. This will encourage you to take charge and discuss your symptoms with your healthcare team.
the foods/activities that make me feel unwell or uncomfortable.
ways to help myself feel better physically and mentally.
Here's some ways:
how to read a thermometer.
Tip: You can ask your healthcare team about tips for reading a thermometer and understanding what the values mean.
how to keep a pain calendar.
Tip: You can use the notes app on your phone or a small notebook that you can keep in your bag to help you keep track. You can also check out the resource page to learn more about tools that can help you track your pain.
name my gastroenterologist and IBD nurse and know how to contact them.
Tip: You can write down the name and phone number of your doctor and keep this information in your wallet, bag or on your phone.
call the clinic to make appointments as needed.
Tip: You can add the clinic phone number to your speed dial so you do not need to search for the number when you need to make an appointment.
prioritize which health issues matter most to me and share them with the team.
actively participate with my healthcare team when it comes to my care (i.e., asking/answering questions, participating in decision making).
Tip: Before your next appointment, it is helpful to take time to think about and write down any questions you may want to ask your healthcare team about your medications or symptoms.
share past experiences, both successes & challenges, and talk about what matters to me.
It may seem overwhelming to take charge of your health but know that your caregivers and healthcare team are there to support you! Tip: Before your visit, write down or practice saying anything you want to discuss with your team.
communicate honestly and openly with my healthcare team if something is not working or if I'm having trouble with the healthcare plan/treatments.
It may be a little scary or uncomfortable to discuss things that are not working for you, but the more your share with you healthcare team, the more they will be able to support you!
follow-up on any referrals for tests, and check-ups/labs as needed.
Tip: The next time you have a health visit, you can ask your healthcare team to show you how to book lab tests and view the results
manage my IBD when away from home (bathroom access, take medications, diet, etc).
Tip: You can check out the resource page for apps to help you find bathroom access.
speak to my healthcare team about how my condition affects my relationships and sexual health (examples: sexually transmitted infections, protection & birth control).
It may feel uncomfortable to discuss these topics with your healthcare team, but remember they are here to support you and want what is best for you!
speak to my healthcare team about how my condition is impacted by using tobacco, a vape, alcohol, or drugs.
talk to my healthcare team about ways to manage stress.
Tip: You can ask your healthcare team for tips and tricks to help you manage the stresses in your life. They want to help!
speak to my healthcare team about how my diagnosis/treatment may impact my future plans.
arrange for rides/transportation to medical appointments as needed.
Tip: Look up the travel route before your visit so you know how to get there. If you will be taking public transit, you can ask your healthcare team for suggestions on the best transit route to get there.
plan or prepare my own meals/food.
Tip: You can ask your healthcare team if they have any resources that might help you to prepare your own food.
manage my health insurance and know what it covers.
Tip: You can ask your caregiver to help you find information about your insurance coverage (e.g., a website or document). You may also want to carry insurance information with you in your wallet or phone.
manage my money/expenses and know how my medications are paid for.
