THESE ARE OUR GOALS AFTER DIAGNOSIS:
Adjust to your diagnosis: Help you adjust to your new diagnosis - answer questions, provide information, clarify expectations, and reduce your worries.
Get you into remission: make the symptoms go away.
Plan for maintenance: Come up with a plan for maintenance therapy - that means keeping you well over time and preventing flares.
Education: Providing you with tools to know what to do and how to help yourself: educating you on what to do when, when and whom to call, what normal is, how to deal with school/friends, etc.
Getting to know each other: Getting to know our team and what we each do.
Lifestyle adjustments: Making sure that all other health issues are taken care of: nutrition, growth, bone health, mental health, self-awareness, and healthy lifestyle.
A LOT HAPPENS DURING THE FIRST YEAR - some of this we can control and some we can’t. We will see you more often during the first year to make sure you are responding the way we want you to and we will be proactive about assessing how you are. Typically, you are seen a few weeks after the diagnosis (to make sure you are responding to the induction therapy and discuss starting maintenance therapy), then a couple months later (to follow the transition from induction to maintenance therapy and make sure you have not lost response), a few months later, and about a year after your diagnosis. Blood work and stool tests will also be more frequent during the first year and it is likely that we will discuss repeated a colonoscopy, MRE, or ultrasound during that year. In some cases, everything goes smoothly and we find the treatment you need immediately but in other cases we need to try something else and tailor the treatment to your disease. You may be feeling fine, but your tests may not be normal and that is sometimes a good enough reason to change your treatment (and prevent complication down the road).
One of the most important points we focus on during the first few months is good communication - we need to hear from you about EVERYTHING you are concerned about and you need to learn what normal is and how to respond to different scenarios.
In summary, the first year is busy for our newly diagnosed patients but it is a good investment to get things right as soon as possible and avoid trouble down the road.
THESE ARE OUR GOALS FOR ONGOING CARE:
Maintain remission: make sure the symptoms don't come back.
Disease monitoring: keep track of your IBD and any changes in your well-being
Keep in touch: be informed on how things are going in your life
By the end of the first year, we hope that you have been adjusting to living with IBD and your disease is under control. WE WANT TO MAKE SURE YOU STAY IN REMISSION. We will continue seeing you in clinic every 3-8 months depending on your disease to check how things are going. To keep track of your disease, we will keep doing tests:
Blood work - every few months depending on your disease and what medications you take.
Fecal calprotectin - 3-4 times a year.
Scope - we repeat a scope at the end of your first year to see whether your intestine has healed. If you are in remission and blood work and fecal calprotectin are normal, we may not need to repeat a scope for a while.
These tests are very important! They allow us to monitor your disease and proactively respond to changes and red flags. Although you cannot control everything, it is in your power to make things better for yourself. Taking your medications regularly, doing the lab tests and seeing your doctor greatly improves your chance of living a healthy normal life.
As always, we want to know about any issues your are facing. This includes your IBD symptoms, mental health or problems in day to day activities. We have a lot of resources to help you deal with these obstacles.