Overloaded by your recent IBD diagnosis? Start here.
Having just received a diagnosis of IBD can feel overwhelming; you may feel like you have many, many questions and you’re not sure where to turn. These feelings are completely normal. This article is intended to be a non-exhaustive, manageable list of resources that may help you begin.
What is IBD?
IBD stands for Inflammatory Bowel Disease, and it is a lifelong condition that means a part of your GI tract (which runs from your mouth to anus) is inflamed.
- Crohn’s Disease (often just called “Crohn’s”) is one type of IBD, and any part of the GI tract can be inflamed with a diagnosis of Crohn’s.
- Ulcerative Colitis is another type of IBD, and just in the large intestine.
Symptoms of IBD can come and go, meaning that the disease course can often feel cyclical with periods where you feel well and periods where you feel worse.
To help get started, this video goes through a lot of the common “language” of IBD that you may hear in your provider visits!
You may be wondering why you need to learn all of this. Having a basic knowledge of IBD (including what type you have) can help build something called disease self-efficacy, which is your perception of how you can manage your disease. Self-efficacy has been shown to be related to both physical and psychological functioning. So, having a sense of IBD knowledge is an important place to begin.
Setting up your Care Team
One of the first steps after a diagnosis of IBD is to find a gastroenterologist that works with your location and your insurance. You can use this website to help. In addition, the person who gave you your diagnosis may take you under their care or may have recommendations for a doctor for you.
Importantly, managing IBD is a team sport, and takes more than just a gastroenterologist!
- If you are seen in a large medical center, resources like nurses, social workers, psychologists, and nutritionists may be readily available to you as a part of your doctor’s office.
- If you are seen in a different type of medical space, you may need to work to find other people to help support you. A great first step is always to communicate with your primary gastroenterologist to see if they have any recommendations for support.
- You can also find other people who have IBD through support groups or online communities, and get referrals from that community.
- One important thing to remember is that this care can be quite expensive. Check out these resources to help get started accessing insurance and thinking through the costs.
Diet and Nutrition
As you build your care team, a really helpful member to include is a dietician. A dietician can help you create personalized diet recommendations for your specific needs. For more general tips, check out the ones below.
- Stay hydrated.
- Check out our guide for eating during an IBD flare for foods to focus on and eating strategies to reduce symptoms.
- Eating a well-balanced diet is also important for overall gut health and can help to prevent a flare-up of symptoms. A 2020 review from the International Organization for the Study of Inflammatory Bowel Diseases (IOIBD) has the most updated information for foods to eat or avoid for both ulcerative colitis and Crohn’s disease. Their recommendations are summarized in the following graphic.
Communicating with your Care Team
Having IBD means that you will communicate frequently with a wide variety of medical staff (just think about all of the potential people on your Care Team!). Check out our post on “Improving Communication with your Healthcare Team” for some helpful tips and tricks!
One term you might hear in thinking through communication with providers is “Shared Decision Making”. Shared decision making is a process by which you are an active participant in your treatment decisions!
- Shared decision making has been shown to be associated with a variety of positive healthcare outcomes.
- This page on Shared Decision Making can help you make sure you are an active part of your medical visits and has many worksheets to help you get started.
Caring for Yourself
One of the most important things you can do throughout this time is to care for yourself. It is normal to feel overwhelmed, stressed, anxious, sad, or any combination of the above.
Caring for yourself can look like any number of things:
- Trying to continue to participate in activities that are of value to you – whether it be yoga, walks with friends, cooking, activism, reading, watching TV, or any number of other things! What is important is that you try to prioritize activities that make you feel like you, and that you find value and fulfillment from.
- To the extent you feel comfortable, share your experiences with loved ones and allow yourself to be supported!
- In addition to loved ones in their life, people often find it helpful to have an IBD community, where they can speak with those who have similar lived experiences. You can share sorrows, joys, and advice! Check out places to find support groups or online communities.
- Please know, if you find that feelings of overwhelm, sadness, and/or anxiety are impacting your daily functioning, it may be time to consider seeking out a mental health professional. If you ever feel you are at risk of harming yourself, call the toll-free, 24-hour National Suicide Prevention Lifeline at 1-800-273-TALK (1-800-273-8255).
Being newly diagnosed can be an overwhelming time – it is the start of a new phase in your life. Know that there are many resources there to help you beyond this article! And your Care Team is always there to help.
Keefer, L., Kiebles, J. L., & Taft, T. H. (2011). The role of self-efficacy in inflammatory bowel disease management: preliminary validation of a disease-specific measure. Inflammatory bowel diseases, 17(2), 614-620.
Shay, L. A., & Lafata, J. E. (2015). Where is the evidence? A systematic review of shared decision making and patient outcomes. Medical Decision Making, 35(1), 114-131.