IBD on the College Campus: Getting the Medical Logistics in Check

Moving away from home and embarking on a college career is bittersweet. You’re excited. You’re anxious. You’re curious. So many emotions. The world is your oyster and you quickly discover what a small fish you are in this big world. For those entering college with an IBD diagnosis, life comes with many more challenges and fears. Medical concerns are a biggie. You are often forced to find an entirely new GI and care team that is local, in case you flare. You may have always counted on your parents to do your injections, now you may have to do them on your own. If you get infusions, you’ll need to find a new place to receive your medication, that may be out of your comfort zone and be complicated due to your course schedule.

That lack of comfort and consistency in care with a GI you know and have built trust with can be a scary chapter in your patient journey. IMG-0902Jennifer Badura’s son was diagnosed with Crohn’s while in high school. As a parent, she found her son’s transition to college challenging.

“It’s difficult to find a new place for getting lab work completed and a new place for infusions. Getting insurance, prior approvals, etc. along with the unknowns and anxiety about going to a new place for treatments and trying to get everything scheduled is tough.”

Dr Fu

Nancy Fu, BSc.(Pharm). MD. MHSc. FRCP(c), University of British Columbia

is a GI based in Vancouver, with research interests in IBD, infection and adolescent transition. She recommends making sure your primary GI connects you with a GI close to where you are attending school in case a flare requires urgent assessment.

“As a GI who sees adolescents, I make sure I am at least electronically available for my patients via texts or emails. Studies have shown young adults prefer to communicate via email as opposed to over the phone.”

Other recommendations that may be of help to you:

Get acclimated. Set up an appointment with a GI local to campus over the summer months or at the beginning of the school year, so you can build a solid relationship with a new physician. Keep your “hometown” GI’s number in your phone in case you’re flaring, hospitalized, or if your current GI has a question. hospital-840135_1920Use the patient portal to your advantage. Never hesitate to reach out if you have a question or medical issue going on. Listen to your body’s signals and don’t wait until it’s too late.

Make sure you remain compliant and manage your disease. Have enough medication on hand and have a game plan in place for how you’ll receive refills—whether it’s your parents bringing your prescriptions to you, mailing them to you, or you physically picking your medication up from a nearby pharmacy. laboratory-313864_1920Set reminders in your phone or utilize apps that track your symptoms and whether you’ve taken your medication.

Keep your prescriptions in a safe, undisclosed place. Let’s keep it real. Chances are there will be someone on your floor or even a roommate who may want to get their hands on your prescriptions, specifically your pain medications. Don’t flaunt them. Keep them hidden. Count your pills each day if you need to.

Discover local support and build a new support community. Being away from home and away from your personal support network is daunting. Check out the local Crohn’s and Colitis Foundation chapter near your campus and connect with local people who understand your reality. See if new friends from campus want to join you for a local IBD charity event. Not only will this be uplifting for you, but it will open their eyes and give them a bit of perspective about what life with IBD entails.

Click here to check out IBD on the College Campus: The Challenge of Academics.

The patient physician dynamic: 5 tips for finding your match

Raise your hand if you’ve considered switching physicians. Raise your hand if you’ve driven more than an hour to seek care. IBDSocialCircle2While attending IBD Social Circle at Digestive Disease Week in San Diego, I listened to a panel with Dr. Neilanjan Nandi, MD, FACP and Dr. Aline Charabaty, MD about the patient and health care practitioner dynamic.

It was an enthralling discussion that opened my eyes to the medical care available to the IBD family. They talked about how physician and patient relationships should not feel like speed dating. Seek a physician who truly cares about how IBD is impacting your life, someone who wants the context behind your symptoms. Rather than a physician wearing a white coat and sitting in front of you, look for one who sits next to you and leaves the white coat off.IMG-2081

If you’re constantly feeling like your GI is being complacent with your care or that you are just a number, you may want to consider finding a physician who’s a better fit. When doing so, it will take some effort on your part. Here are some tips to make the transition a bit less stressful.

  1. Look for a GI who specializes in IBD. Not every GI is passionate about Crohn’s or ulcerative colitis, it may not be their specialty. Finding an IBD specialist will put you in the hands of a care provider who knows the ins and outs of your disease.
  2. If you’re making a road trip to attend the appointment, let the office know. Before you drive hours for an appointment, let the nurses in the practice know that this isn’t a run-of-the-mill appointment. Maybe they can allot more time.
  3. Have your records sent over before you go. Provide the new physician with your back story, so they can familiarize themselves with your patient journey before your first face-to-face.
  4. If tests will be needed, see if they can all be arranged in one day. Save yourself a trip (or two) and check with your physician to see about them getting preauthorization for any tests or procedures ahead of time. This way insurance is notified and it’s one less headache to deal with down the road.
  5. Build a rapport with the nurses in the office. Don’t be afraid to lean on nurses for support. They are often the “middleman” between you and the physician. I rely heavily on the nurses in my GI office. Nurse Penny and I are buds!
  6. BONUS TIP: See if a family member or friend can attend the appointment with you. As the patient, sometimes it can feel as though the teacher from Charlie Brown is talking while we’re sitting in an appointment. So much is being thrown at us, so much is being said—but we’re not comprehending what it means for the present and the long term. By having a loved one by your side, they can take notes—so you can focus on asking the questions you need answered. That extra set of ears and eyes works wonders.

IBDSocialCircleSwitching physicians and entrusting someone new with your well-being is not easy. Trust your gut (for once!) and advocate for care that makes you feel like you have a voice. Think about how you feel leading up to an appointment, while you’re face to face with the physician and the emotions you may experience on that drive home. If anything makes you feel less than or not heard, connect with fellow patients in your area to see who makes up their care team. Do research about IBD specialists within drivable distance and take the steps you need to feel like you have your best ally against this disease.