Navigating Transition in IBD Care: Preparing for What Comes Next

Build confidence in managing IBD. Learn how teens and young adults can transition to adult care and create lifelong skills to navigate their Crohn’s disease or ulcerative colitis. 

What Is Transition in Crohn’s Disease and Ulcerative Colitis and Why Does It Matter 

One of the most rewarding parts of my job as a pediatric gastroenterologist is helping youth who are navigating inflammatory bowel disease (IBD) transition from pediatric to adult care.  

It’s important to me that this transition is handled thoughtfully. IBD is a chronic illness, which means patients who are diagnosed young will navigate their Crohn’s disease or ulcerative colitis for the rest of their adult lives.  

Dr. Tolulope Falaiye

By empowering my patients to take an active role in their care when they’re young, they become more prepared as adults. 

I tell my patients and their families that transition is a process of building confidence and skills. And the best time to prepare is when you’re feeling well.  

Understanding the Transition from Pediatric to Adult IBD Care  

Transition isn’t just about changing doctors. It’s about the patient taking a more active role in managing their condition. There is no single “right” way to do it. However, there are skills that can help make it easier to navigate. 

Key Self-Management Skills for IBD Patients 

• Knowing your diagnosis and treatment plan  
• Understanding the names and doses of your medications  
• Knowing how and when to refill prescriptions  
• Recognizing symptoms that require medical attention  
• Scheduling appointments  
• Understanding your infusion schedule, if applicable  
• Navigating insurance and pharmacy systems  

IBD care is more than showing up to appointments. It’s knowing what’s going on with your body, how to manage it, and when to reach out for support. 

Common Challenges During IBD Care Transition 

Transition typically occurs around late high school, college, and early career; years that are filled with change. Young adults are juggling academics, social lives, jobs, and often living away from home for the first time. It’s not uncommon for routine medical appointments to feel less urgent, especially if symptoms are well controlled. 

But IBD doesn’t pause during these milestones. It’s important to maintain a treatment plan to prevent flares and to make sure care is available when and if needed. 

Navigating Insurance Changes with IBD 

Insurance changes are another major hurdle during this period. Patients may age out of a parent’s plan or switch to employer-based coverage, Medicaid, or military insurance. Coverage for biologics, prior authorizations, and infusion sites all vary based on insurance. Reviewing these key details before a change happens helps prevent disruptions in care. 

Tools to Support a Smooth Transition 

I always encourage patients to reference transition checklists, like this one or others recommended by their provider. Keep in mind that these aren’t tests; they’re skill-building checklists. 

Common questions include: 
 

• Do you know how to refill your medications?  
• Can you schedule your own appointments?  
• Do you know your infusion schedule?  
• Do you understand what to do if you miss a dose?  
   

Answering “not yet” simply identifies an opportunity to learn. 
 

Using Electronic Medical Records to Manage IBD Care 

Technology also makes transition easier than ever. Most electronic medical record (EMR) systems allow patients to download or share their records. I encourage young adults to keep digital copies of colonoscopy reports, recent lab results, imaging, and infusion history, and take these documents with you to your new provider. 

Travel and College: “Mini Transitions” 

I often describe travel as a mini transition and a great opportunity to practice your transition skills. Heading to college or moving into your own place are transition moments, too. A weekend away, a semester abroad, or moving into a dorm all require planning. 

For college students, I recommend: 

• Checking to see if your dorm room has a personal refrigerator, since medication should not be stored in communal spaces 
• Requesting housing near a bathroom  
• Confirming that dining halls offer enough options if you have food triggers 
• Identifying a local pharmacy and lab 
• Knowing where and when you can receive infusions if you relocate  
• Having a reliable transportation plan to the local doctor and pharmacy 

For travel, many recommendations remain the same while others include: 

• Packing medication in carry-on bags and bringing a note from your providers stating which medications you’re prescribed  

• Considering travel insurance if you go abroad and know what coverage you have if you get sick 

   

Preparation allows young adults to focus on living their lives and not scramble during a flare. 

Start Early—While Things Are Stable 

The most successful transitions begin early, often in early high school. During visits, I gradually shift more questions directly to the patient. Families remain essential supporters, but the patient begins to take ownership. 

When disease activity is stable, there is space to build skills thoughtfully. A flare is not the ideal time to learn how to navigate insurance or transfer infusion services. You should focus on healing. 

There is not one model of transition. What matters most is having the tools for the next step. 

The Goal: Smoothing the Path, Not Perfection 

Transition isn’t about doing everything alone overnight. It’s about building confidence step by step. 

With preparation, young adults with IBD can travel, attend college, start careers, and pursue their dreams without losing continuity of care. 

My goal isn’t simply to transfer a patient to an adult practice. It’s to ensure they are provided the tools to manage their health for the long term. And that preparation starts long before the handoff ever happens.