Transitioning to Adult IBD Care
If you were diagnosed with Inflammatory Bowel Disease (IBD) when you were still considered to be a child, you would most likely be treated by a pediatric GI doctor. As you become an adult, a lot of transitions need to be made, including transitioning your care for you and your IBD.
While it’s tempting to stick with what’s working for you and what’s familiar, it’s important to transition your care as you get older. Being proactive with this transition is critical to preventing any gaps in your medical care.
You will have different healthcare needs as an adult, and you will also have other concerns that a pediatric GI doctor won’t have as much experience with such as fertility concerns or questions about sex and IBD. This guide can help you make that transition as easy as possible.
Know the details
Make sure to discuss with your current doctor the full scope of your condition. While your new doctor should have access to your medical records, knowing this is important to make informed medical decisions.
Some questions to ask:
- What type of IBD do you have?
- Disease location(s)
- Medications (current and past)
- Current concerns (need for surgery, fistula formation, etc.)
Self-efficacy, or your own confidence in your ability to independently manage your care, has actually been shown via research to be a useful predictor of readiness for transitioning! Building a knowledge base about your own disease and disease course can be a great way to increase self-efficacy.
With a chronic condition like IBD, having health insurance and knowing your way around it is very important. As you transition to adult care, it is more likely than not that insurance companies and your physician’s office will communicate with you rather than a parent or guardian. As such, having a sense of knowledge about health insurance will be important.
Think about how you are covered by insurance right now.
- Are you still covered by your parents’ insurance? Make sure you have that information.
- Does your employer offer health insurance?
- Will you need to purchase health insurance through the marketplace?
It’s a good idea to learn more about how health insurance works to make sure that you’re adequately covered. Check out this information about understanding health insurance.
Even with insurance, medications can be expensive. However, there are different financial assistance programs that can help keep you on your treatment plan.
Managing your medical care
You are a central part of your care team! As you take on more responsibilities, it includes taking charge of your healthcare. Scheduling appointments, refilling medications, and following your care plan are all important parts of managing your IBD. If you don’t have an adult GI provider yet, you can look for one that specializes in IBD.
Managing your overall health will be very helpful in managing your IBD and limiting its impact on your life.
Try to eat a well-balanced diet with fruits, vegetables, whole grains, healthy fats, and proteins. Limit highly processed snack foods that are high in refined grains and added sugars. Not only do these not provide adequate nutrition, but they are associated with an increased risk of IBD flares.
When you are having an IBD flare, you may need to adjust your diet to help reduce symptoms and stress on the GI tract. For more information, resources, and ideas on diet and nutrition, check out this site!
Having IBD doesn’t limit you from exercising. In fact, regular exercise can help you manage your condition by reducing inflammation, increasing bone density, reducing anxiety, reducing symptoms of depression, improving sleep, and managing stress! Check out our guide to getting started.
Drugs or alcohol
You will want to be very transparent with your doctor about use of alcohol or recreational drugs. While concern for legality may keep you from discussing it, your doctor needs to know as it can affect your disease severity or your treatment plan. There is also a risk of interaction with some medications.
Alcohol will affect everyone differently, so only you will know how much it affects your symptoms or IBD. It’s a known irritant to the gastrointestinal tract and could make inflammation or symptoms worse. When drinking, you also are at a higher risk of becoming dehydrated, which is especially concerning if you are already prone to dehydration. And, of course, you should avoid any alcohol until you are legally allowed to drink it.
Having a chronic condition like IBD can sometimes cause you to feel overwhelmed, stressed, anxious, sad, or any combination of the above. Caring for your mental health is just as important as your physical health. Here are some things to consider when caring for your mental health:
- Try 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 challenges, 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).
Consider your goals
Having IBD doesn’t have to limit you from accomplishing what you want to do in life! It’s okay if you don’t have everything planned out right now, but you don’t need to restrict your options because you have IBD. Here are some additional resources for common concerns that people with IBD have:
Your Care Team is also here to support you during this time, so don’t hesitate to reach out if you have questions!