Heading off to college brings a lesson in independence, a skill that's particularly important for young adults with inflammatory bowel disease.
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Teens need to take charge of their chronic condition, whether it's Crohn's disease or ulcerative colitis, says Michigan Medicine gastroenterologist Michelle Muza-Moons, M.D., Ph.D., a clinical lecturer at the University of Michigan.
IBD affects about 1.6 million people in the United States. Symptoms include abdominal pain, diarrhea and fatigue.
Although doctors don't know why, most IBD diagnoses occur when patients are ages 18 to 24.
"When you're diagnosed as a teenager, you tend to rely on your parents to handle a lot of it," Muza-Moons says. "As you go to college, you strike out and live independently, and that's the time I tell them to strike out independently in your health care, too."
There is no cure for IBD, she notes, but it can be managed well with proper treatment.
Here, Muza-Moons offers a "syllabus" for those living away from home for the first time:
Tips for college students with IBD
Keep medical contacts handy: Gather all of the medical information your parents have. Know your doctor's name, address and phone number and your home pharmacy.
"Keep a list, and now start making a new list when you move to your new school of a nearby pharmacy and doctor," Muza-Moons says.
Know the lingo: Understanding health insurance is also critical. If you're going to school out of state, secure insurance referrals for new doctors closer to campus.
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Familiarize yourself with basic terminology and best practices, too. Do you understand copays? Or the importance of going to an in-network provider? Where is the closest in-network hospital? Do you know how to answer questions on various forms?
Make an appointment now: Contact a local gastroenterologist as soon as you know your first-semester schedule.
"Sometimes it takes a while to get that first appointment, so find a doctor as early as you can that fits your class schedule — even if you haven't had a flare-up," Muza-Moons says. "Having a local doctor to help coordinate care with the home doctor is so important."
This is an absolute must for patients who receive medicines intravenously: "There is a lot of administrative paperwork involved in infusion therapy, with a lot of insurance approvals and such, so it's critical to make that connection with a specialist early on," she says.
Pack your paperwork: When visiting a new specialist, bring photocopied documentation from your most recent gastroenterologist visit — including labs and bloodwork, your current medicine list and, ideally, a copy of the report from your initial diagnosis.
"All of this will help the new physician, and together you can work on a care plan," Muza-Moons says.
Be ready for emergencies: College students are always on the go — and flare-ups can happen at any time. Which is why your backpack should be ready for emergencies.
SEE ALSO: Traveling with IBD: 4 Key Ways to Prepare
Carry copies of your medicine list, your pillbox, a change of clothes, wipes, creams and whatever else you need to get you through an episode on the fly.
Take advantage of technology: Download apps that help you navigate your new surroundings and make you feel comfortable should an emergency arise. Those apps include the restroom finder SitOrSquat and Poop Tracker, which records stool color, frequency and urgency.
Because so much change is going on for new college students, flare-ups often happen.
"Mom's cooking isn't around and you're eating new foods, getting less sleep and probably more stressed out because everything you know has changed and, well, exams are hard," Muza-Moons says. "A stool tracker provides insight into how it's all impacting the student."
Be proactive: Make an appointment and file paperwork with your college's disabilities office. Staff there can help create a plan if you must miss class because of illness. Bring a letter from your gastroenterologist to prove your chronic condition.
"Many of my patients gripe about doing this because they feel fine and feel their IBD is controlled," Muza-Moons says. "I remind them that it's a bit of an insurance policy if something does happen. The office can step in to help you if you miss an exam or something else important."
Tell your professors: In addition to the disabilities office, tell your professors about your IBD, perhaps offering a written lesson on Crohn's or colitis. U-M provides such a resource for students. Then if you miss a class, they're more likely to understand.
SEE ALSO: How to Shop for Groceries With IBD
"This is an important one because some people have trouble with their IBD when they take tests because tests cause stress and stress can cause flare-ups," Muza-Moons says. "If you're running out to use the bathroom during a test, the knowledgeable professor will be accommodating."
Picking a seat near the door also shows you're trying not to disrupt others with your quick exits.
Ask peers for help: Finding fellow students who will share notes when you miss class or slip out for a bathroom break could prove invaluable during an unplanned absence.
Another relationship to build is with a local chapter of the Crohn's & Colitis Foundation or a campus support group. "Members live with the disease, too, and they will have great advice," Muza-Moons says.
And while informing roommates or other friends about your IBD is a personal decision, it also offers a chance to help educate others.
Create a safe living space: Talk to your college's residence life office about getting a single room with a private bathroom to help eliminate anxiety. Have a doctor's letter explaining the condition when stating your case.
Such accommodation also ensures a quiet space for sleeping, which is important for people with IBD.
"An IBD student can't tolerate the same behaviors of other college students," Muza-Moons says, noting that the typical coffee and energy drinks favored by this crowd are a no-no. "Caffeine exacerbates diarrhea, and it causes inflammation."
To schedule an appointment with a Michigan Medicine gastroenterologist to discuss treatment for Crohn's disease or ulcerative colitis, call 888-229-7408.