Your Guide to Preparing for College with IBD
Congratulations on preparing to begin college! Starting college is a very exciting time and a time of many transitions. Large life transitions always come with both joys and challenges, and this can be especially true for people with IBD.
In addition to considering your course of study, you also need to consider what managing your IBD will look like in college. Having IBD can create unique challenges in planning for and adjusting to college, and this has been shown in multiple scientific studies (like this one or this one).
There are some common challenges that people with IBD work through or experience in getting ready for and transitioning to college. This guide is meant to help you start thinking through some of them!
We’ll cover 6 key areas in this guide.
- Academics
- Transitioning Medical Care
- Residential Life
- Social Support
- Dietary Considerations
- Lifestyle Approaches
Starting with …
Academics
Transitioning from high school to college academics is a big change! The academics are less centralized, you may have much more freedom in what you choose to study and making sure you receive accommodations is much more on your shoulders than ever before.
Here are some aspects to consider as you create your academic path.
Contact the Disability Support Services Office
Contact Disability Support Services Office (some campuses call this something else, but a quick Google search of “Your College Name Disability Services” should get you to your school’s specific relevant office). This is the office that can help you receive the academic supports you are entitled to, whether this is extra time on work or tests, or notifying your professors that you may have absences due to medical procedures.
This office is particularly important to contact if you have an Individualized Education Program (IEP) or a 504 Plan in your high school — arranging to have similar academic supports as you transition to college can be extremely helpful!
Just like you do when you go to a doctor, it can be helpful to have a list of things you want to discuss when you meet with Disability Support Services. For example:
- Existing accommodations you get (from your IEP or 504, if applicable)
- How to communicate with professors that you may miss classes, homework, or exams
- Priority registration for classes (if you know you feel worse in the afternoon, for example, you may want to try and get priority registration so you can attend classes in the mornings)
Walk your class route beforehand
Once you have your class schedule, you may want to walk the routes on campus with an eye towards where there are good, accessible bathrooms you’d want to use. Knowing this in advance can help you feel less overwhelmed once classes start.
Check-in with your professors
Check in with your professors early in the semester!
If you go through Disability Support Services, you’ll likely get a piece of paper to hand to your professors outlining your accommodations. If you don’t, it can be great to send an email or pop into office hours early in the semester both to get to know your professors and give them a heads-up that you may need flexibility and accommodations throughout the semester.
Doing this earlier rather than later is essential! While the conversation may seem awkward to have, most professors want to get to know students and help them learn in the best way they can. Communicating with professors is a great way to not only make sure you’re set up for academic success but also make connections and relationships!
Initiating this conversation can feel daunting, so feel free to check out this template to help you get the conversation started!
Reach out to Counseling Services
Colleges also often have Counseling Services available for their students. Setting up some appointments to have a safe, structured place to talk about your adjustment to colleges (the challenges and the triumphs) can be helpful! While counselors are also always there for large issues, think of setting this up early — it’s more like preventative medicine this way!
Transitioning Medical Care
Starting college, especially if you’ll be moving out of your home, may mean that you are more responsible for your IBD care than ever before. Transitioning to adult care can be a sensitive time, and research shows that youth with IBD can experience poorer outcomes when transitioning to adult providers, especially if there is a gap in their medical care (see this article or this one to learn more).
However, research shows that having higher self-efficacy can be associated with improved readiness for this transition!
Develop your sense of IBD self-efficacy
Self-efficacy has to do with your feelings of confidence in your ability to manage your care. Developing your sense of IBD self-efficacy can take time, but here are two places to start.
Making sure you have concrete skills and knowledge around your care! This ranges from being able to set up your own doctors’ appointments, to knowing your medications and dosages, to being able to describe your symptoms and disease trajectory.
Feel comfortable asking and advocating for yourself in a medical context. Especially if you are at school away from home, you are your own best advocate with doctors (both on campus and off) to help meet your needs! Writing down notes and questions you want to ask before a medical visit can help you feel more prepared to ask and advocate for what you need with your provider.
Here are a few resources to develop your IBD self-efficacy
- Check out this quiz on IBD skills!
- You can also look through this checklist to help you think through this!
- This resource has more information about multiple aspects of the transition of care.
Create your care team
If you’re going to school away from home, you may need to find a new care team. Reach out to campus health (you can use this template to get started) to see what they can offer you, and to see if they have a recommendation for a local gastroenterologist!
You also may need to speak with your insurance to find out what is covered. Check out this script to get started.
Always remember that both physical and mental health are important. Creating a relationship with a counselor at school or a mental health provider in the area can help you navigate all areas of this transition!
Residential Life
If you’re attending a residential school, chances are you’ll live in a dorm for at least part of your college experience! There are a few things to consider ahead of time to help make your transition into dorm life as easy as it can be.
Work with the office of residential life and disability support services
Check-in with your Office of Residential Life and be clear about what you need. You can have a conversation with them about things like access to a private bathroom, access to a fridge for medication, etc.
You can use this dorm room request as an example. If you have any advocating for these needs and getting them accommodated, your college may have Student Support services you can reach out to for help! Or you can always check in with Disability Support Services.
Talk to your roommates
If you’re living with a roommate, it may be helpful to tell them a little bit about your IBD so you feel comfortable in your living space. Check out the “Social Support” section below for more information!
Prepare in advance for procedures
Preparing for procedures like a colonoscopy may require some planning in advance. Speak with your school’s Office of Residential Life to see if there is a more private dorm with a bathroom attached that you may be able to use while you prepare.
Alternately, you may want to try and see if it’s possible to leave the dorms for a day and prepare at your home, a friend’s house who lives close by, or even a hotel.
Social Support
College can be an exciting time to make new friends, and the social scene in college can be overwhelming! Remember to pace yourself, not everything will click into place at once.
Think about disclosure and building new relationships
One thing you may need to navigate is deciding when and if to disclose your diagnosis to new friends. In general, feeling you can communicate openly and feel supported by those around you helps create strong relationships!
For more information about navigating disclosure, feel free to check out this resource. Navigating romantic partnerships and sexual intimacy can also be a huge consideration. If this is something you’re thinking about or worried about and you want to learn more, this webinar is a great place to start.
Create an IBD community
Having social support from others who understand what it is like to have IBD while transitioning to college can be extremely helpful. Your college health center may have a group already running for students with IBD or chronic illness in general.
In addition, there are online support groups for college students with IBD like Campus Connection via the Crohn’s and Colitis Foundation.
Make new friends but keep the old
Keeping relationships with old friends who know you well can be an excellent, grounding source of support. Even though you may be busy, consider setting aside some time for phone calls or FaceTime’s with old friends!
Dietary Considerations
If you’re attending a residential school, you’ll likely be eating many of your meals in a dining hall. Dining halls can be wonderful for meetings, hanging out with friends, and meeting new people, and they can pose unique challenges for someone with IBD!
Work with campus dining services
One of the first things to consider is reaching out to dining services at your school if you are on any sort of specialized diet. They can help you learn more about what is offered at your school (e.g., a gluten-free section, a separate cabinet with specialized foods).
Feel free to use this template letter to get the conversation started! Many dining halls also post menus in advance so you can try to plan where you would like to eat when depending on the options available.
Do some alternative dining research
Research options around your college (grocery stores, restaurants, etc.). This may help you not only grab some snacks to keep on hand that you know work well for you but also help you be able to propose specific locations if you’re going out to eat with friends.
If you want to keep food in your dorm that would need to be heated/refrigerated, check out the “Residential Life” section above to help you get started requesting appropriate food storage for your dorm (e.g., microwave, fridge, minifridge, etc.)!
Alcohol use
Alcohol and parties can be a common part of college life for many students. 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. There is also a risk of interaction with some medications, so be sure to discuss this with your doctor or pharmacist. And, of course, you should avoid any alcohol until you are legally allowed to drink it.
Lifestyle Approaches
Think about balance
One huge thing to consider as you prepare for and start college is balance. It can be common to want to do everything and join everything and never rest! Finding balance is never easy, but especially with IBD, it’s important to think through thinking through how much to do versus how much rest you need.
There may be some natural trial and error here — that’s completely normal! But, if you feel you’re struggling, reach out to friends or campus services for support, and don’t be shy about asking for help.
Take small social steps
Another common concern is having difficulty finding things to join and participate in. Take it slowly. Think of one new thing you’d like to try each week (this could be attending a club meeting, making a study date with a new friend, or attending a show).
Reflect on what you are interested in and passionate about. This can help guide your choices! It can take time to find your social stride in college, so be patient with yourself.
Be proactive in your self-care
Whatever your social life looks like as you transition into college, it is always essential to prioritize your self-care. Self-care looks different for everybody.
For some, it is mindfulness, yoga, meditation, or journaling.
For others, it is taking a moment to breathe, take a mindful walk, or mindfully make a meal or a snack.
Think about scheduling your self-care the same way you would schedule class or meetings. It’s that important!
Wrapping Up
Maybe the most important to remember is that you are not alone in this process! Starting college with IBD is an exciting and complex time all at once. Don’t hesitate to reach out to your support systems for help and be proactive! You can also use some of the great resources below for additional information on any of the above.