navigating college with ibd

The month of June is often an exciting time. Many families are looking forward to making memories with fun summer activities. Trips to the beach, time in the pool, Fourth of July fireworks, family vacations, and campfires are on the horizon. June is the transition month that marks the end of the school year and the official start of the summer season. For some of you, the end of the school year means that your child graduated high school. What an amazing accomplishment! Your child successfully completed the academic requirements for a high school diploma while navigating the extra challenges that come with a chronic illness. You are proud of your child, but nervous about what the future holds. If your child has chosen to enroll in college post-graduation, you may be nervous for the big transition in the fall. Will your child be able to manage his or her medications independently? What will your child's diet look like? Will the stress of the transition cause a flare? Will your child receive academic support? How will your child's medical care transition smoothly? This page is intended to help guide you and your child through the college transition. Your child is now an adult, growing in independence. While I typically write to parents of children diagnosed with IBD, from this point on, I will be writing directly to the impending college student with an IBD diagnosis. Parents, you are still more than welcome to read over the information presented on this page as you help navigate your child through this next step in their life. In fact, it may be beneficial for both the future college student and the parent to read this information together to ensure that the transition to college is as smooth as possible for both parties. To the parent, it is my hope that you feel comfortable and confident with your child's ability to navigate their diagnosis independently away from home. To the future college student, it is my hope that with the right strategies and support, you will be able to thrive academically, socially, and personally while you are at school. However, while you are busy preparing for college, please don't forget to enjoy all those fun summer activities too!

Tip #1: Create a list, folder, or binder with your current pertinent medical information.

Creating a list, folder, or binder with all your medical information in one place will help you stay organized as you navigate your independence in relation to your diagnosis. You can consult your list if you need to make a call to your insurance company, if you are planning to see a new gastroenterologist, or if you unexpectedly get admitted to the hospital.

You can add anything that you deem as relevant to your IBD journey to your list, folder, or binder, but some items to consider including are:

Name, address, and phone number of your current home primary care doctor

Name, address, and phone number of your current home gastroenterologist

Name, address, and phone number of your current home pharmacy

All your current medications, including: medication name, strength, dosage, route, and frequency

Current health insurance information, including a phone number for the insurance company and/or your health insurance card or copy of your health insurance card

Printouts of the doctor's notes from your last visit, your most recent labs and bloodwork, and if possible, the notes from your initial diagnosis

Tip #2: Determine your plan for health insurance coverage.

As you are probably aware, most health insurance plans allow dependents to stay on their parent's policy until age twenty-six. Of course, you should always check with your parents to review any limitations of their health insurance plan, as well as for approval to stay on their policy. If you find yourself in need of health insurance, there are other options available. Most colleges and universities offer a student health plan that you can enroll in at the start of each semester. You should call and do research before enrolling to ensure that your specific healthcare needs will be covered under the plan.

Tip #3: Familiarize yourself with medical and health insurance terminology.

For some, going to college means the transition from pediatric care to adult care. This transition typically happens between the ages of eighteen and twenty-one. This can be overwhelming at first. Your pediatric team is familiar and comfortable, and the world of adult care is new and daunting. Whether you make this transition within your current practice/healthcare system or you are switching to a completely new healthcare system, it is best to start practicing your independence in making your medical decisions. Familiarize yourself with scheduling appointments independently and answering your provider's questions directly, rather than looking to a parent or guardian for help. Research and understand your diagnosis and the medical terminology associated with it. Know your medications and medication schedule. Another huge piece to becoming more independent in your medical care is understanding health insurance. What is a deductible? What are co-pays? What is the importance of going to an in-network provider? Once you understand the basic terminology, apply your newfound understanding to your specific health insurance plan. Will you need referrals for out of state providers if you are attending college out of state? Have you met your deductible? Knowledge is power. The more knowledge you have about your diagnosis, medications, and health insurance, the more comfortable you will feel managing your medical care independently. The more independent you are, the easier the college transition will be.

Tip #4: Inform your current provider of your intent to attend college.

You should inform your current provider of your plans to attend college months in advance for the smoothest transition possible. He or she can help you adjust your medications or treatment plan as needed, as well as provide the necessary prescription refills or medical documentation you may need for disability services during the transition period. If you plan on attending college far away from home and will not be returning to your current provider for care, your current office may be able to help you find a new provider to take over your IBD care. He or she may also be able to fax over any medical records from your current practice to your new practice. If you plan to do this, you should contact the new office to schedule an appointment as soon as possible. This way, you have a better chance of securing an appointment soon after your arrival to college. If you plan on attending a college that is far enough from home where driving to appointments is not feasible, your provider may be able to help you locate another gastroenterologist close to campus to collaborate on your IBD care. You should always double check with your provider and your insurance company to make sure that this is feasible.

Tip #5: Ensure that you update your preferred pharmacy if necessary and locate the nearest in-network hospital.

This tip is pretty self-explanatory! Make sure that you update your preferred pharmacy with your current or new provider's office if necessary. Also, if you take medications that need to be refrigerated, ensure that you have access to a refrigerator while on campus. Locate the nearest hospital to your campus that will accept your insurance in case an ED trip or hospitalization becomes necessary. You can add the new pharmacy and hospital information to your list, folder, or binder.

Tip #6: Speak with your college's disability office or center.

Many colleges have a disability office or center. If you will be attending a public university or a government-funded institution, you can have assurance that your school will be able to provide you with learning adaptations to accommodate your diagnosis under Section 504 of the Rehabilitation Act of 1973. Depending on your college or university, you may be able to receive accommodations, such as priority enrollment to classes (selecting classes ahead of peers), note-taking assistance, extended time for test taking, ability to take tests in a separate room, adjusted deadlines/attendance requirements, housing and/or dining accommodations, and more. Some students are able to request rooms with a kitchen to prepare meals from home rather than having a meal plan. You also may be able to request a single room or a room with a bathroom. It is best to set up a meeting with your college's disability center as soon as possible. Bring copies of your current 504 if you had one in high school! Most private universities also have a disabilities office that will work with your specific needs to help you achieve academic success. It is always best to call first to ensure that receiving accommodations is feasible.

Tip #7: If you are comfortable, talk with your professors and roommates about IBD.

Whether or not to have a conversation with other individuals about your diagnosis is dependent upon your personal comfort level. Many college students with IBD find that being open and honest about their diagnosis and the accommodations and/or restrictions they have is more freeing, leading to less stress overall. If you choose to talk with a professor, it may be better to talk with them one-on-one during their office hours. Be sure to have a letter or note from your school's disability office on hand so that your professor has written proof of your need for accommodations. Having a conversation with your professor may help him or her to better understand your diagnosis, as well as remember your face in connection to the type of accommodations you need. If you have a roommate or several roommates, choosing to talk with them about your diagnosis is also a very personal decision. If you choose to discuss your diagnosis with them, it may be helpful to explain what IBD is and communicate to them your need to urgently use the bathroom or the importance of prioritizing rest. If you are living in a suite with other roommates and have a kitchen, you may want to mention any dietary restrictions you have. This may help to prevent awkwardness in the future.

Tip #8: Plan ahead to ensure you are receiving adequate nutrition.

If you will be purchasing a meal plan, you may want to talk to dining hall staff or a manager about ingredients used in food preparation or any special concerns or considerations you have when it comes to food. There are typically several different meal options presented in the dining hall at any given time. Be smart with your food choices and pick items that meet your specific nutritional needs. It may also be helpful to keep healthy snacks in your dorm room that you know will not provide you any discomfort. If you are living in a dorm with a kitchen or in an apartment, you will be able to prepare all of your meals. Meal prepping and/or making meals to keep in the freezer can be a huge time saver, especially as you navigate the busyness of your course work and social life while at school. When it comes to your nutrition, the best thing you can do is to be proactive. Planning healthy meals in advance before you become overwhelmed with academics is your best option!

Tip #9: Know your terrain.

This may sound silly, but when you receive your class schedule, walk through your campus to locate the nearest bathroom to each of your classes before your classes even begin! That way if there is ever a situation in which you urgently need to use the bathroom, you at least have some idea of where the closest one is. There are also apps that you can download to your phone to help you locate the nearest bathroom. It also may be helpful to identity other resources on campus, such as the disability center, student counseling services, the student health center, etc.

Tip #10: Prioritize your health and enjoy your time at college!

The last tip is to prioritize your health! Going to college is an incredibly exciting time for many young adults, but it can also be a challenging transition. You will be away from home in an unfamiliar environment and will be completely responsible for your medical care for the first time. This increased stress has the potential to cause a flare, therefore, it is important to prioritize your health by finding or creating a support system you can lean on if you find yourself getting overwhelmed. Your support system can include your parents or family members, friends from high school, new friends from college, or a counselor. Many colleges and universities offer a certain number of free counseling or therapy sessions for students each semester. Take advantage of those opportunities. Reach out to people and build your support network before you become overwhelmed. That way, if you do ever feel overwhelmed, you have people you can lean on for support. Ensure that you rest, eat well, and stay hydrated. And enjoy the experiences and opportunities that college has to offer. You got this!

If you are a high school graduate with plans to attend college in the fall, I hope the information on this page was helpful for you as you prepare for your big transition. Please use this summer to organize your medical information and create a plan for doctor's visits, prescription coverage, health insurance approval, etc. Remember, if you are going to run into a problem, it's best to run into the problem in June rather than August so there is time to correct it before starting school! If you have any questions or need support, IBD Connect is here for you. We offer a virtual young adult support group for ages 18-30 that meets one time monthly. For more information about how to get connected with this support group, click the link at the bottom of this page. You can also feel free to email me. My email address is linked below! If you are a parent reading this page, I hope that this information was useful to you as you assist your child through this major life transition. If you would like more support, we offer a virtual caregiver support group that meets one time monthly. If you would like more information about this group, click the link at the bottom of this page. As always, I would like to remind everyone not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child's individual treatment plan, please seek out the professional medical advice of your child's doctor. Stay strong IBD Warriors/IBD Warrior parents!