When IBD care is far away, treatment can be close to home

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Has this ever happened to you? Your Crohn’s disease or ulcerative colitis symptoms suddenly get worse, you need treatment, and…the closest inflammatory bowel disease (IBD) specialist is hours away.

You’re not alone. Roughly 1% of Americans live with Crohn’s disease or ulcerative colitis, and many don’t live near a major city. 

People in rural, remote, or underserved areas often have limited access to healthcare and specialized services. Although these gaps in care are real, no one has to suffer in silence. If you’re located far from specialized care, you can still get the treatment you need, build connections, and find support.

Earning the “special” in specialty care

IBD is a complex condition. An IBD care team may include providers with a range of specialties, including:

• Colorectal surgeons

• Dietitians

• Gastroenterologists

• Mental health professionals

• Nurses

• Primary care physicians 

• Radiologists

So, what do you do when many of these specialists are miles and miles away? 

Start local

Your primary doctor or local clinician can help if you experience a flare-up or need a medical decision fast. They may be able to refer you to a PCP or community gastroenterologist with expertise in IBD.

Explore your resources

These tools from the Crohn’s & Colitis Foundation can help local providers offer the care you need:

• Find a Medical Expert: If you need to expand your care team beyond your local doctor’s office, search the Find a Medical Expert page for an IBD expert near you. This online tool lets you search for a doctor, nurse, surgeon, dietitian, and other healthcare professionals within 100 miles of where you live.

• RADIUS™ and other telehealth options: You and your doctor may be able to connect with a dedicated, multidisciplinary IBD care team through the RADIUS™ program when geography makes specialized care hard to reach. You can also explore other telehealth platforms and services, such as Oshi Health, alongside other vetted apps and digital health platforms on the Foundation’s helpful apps page.

When you need more care options

For more specialized care, ask your doctor to recommend or refer you to a specialist for a consultation. Many doctors and medical practices coordinate care with specialists who prescribe and monitor treatment.

Expand your care team

If your treatment isn’t working, seek a second opinion or look for another doctor. Advocating for yourself is important, especially if your symptoms persist, your treatment does not work as expected, or you’re facing a major surgery. The Crohn’s & Colitis Foundation’s IBD Help Center can help you prepare questions to ask when seeking a second opinion.

Explore telehealth

Virtual appointments can make care more accessible. Remember that while telehealth can eliminate the need for travel in some situations, it does not replace in-person care. 

If you’re seeking a consultation, a meeting with a specialist, or a conversation with a dietitian, explore virtual care options. Follow these steps to get started with telehealth:

• Ask whether your local physician can provide the lab work, imaging, or follow-up care to support virtual treatment.

• Check your insurance coverage and costs.

• Confirm that your new healthcare professional is licensed to provide telehealth in your state.

• Find a quiet, private place to take your appointment.

• Test any required technology in advance.

Connect local and specialty care

Make it easier for your specialists and local doctors to work together by bringing an overview of your health history to your appointments. Make sure to include your:

• Diagnosis

• Medications

• Recent lab, imaging, endoscopy, or pathology results

• Records of emergency room visits and/or hospitalizations

• Symptoms

• Treatment history 

• Questions and care goals

Use this form to record symptoms, treatment experiences, and goals, or explore helpful apps to track symptoms and share your updates with your care team.

Also, ask your providers to share medical records electronically and coordinate your care, so you can focus on feeling better.

Prepare for travel 

If you need to travel for care, plan ahead to help save time, effort, and money.

• Ask your care team to schedule tests and appointments for the same day.

• Ask your local doctor to monitor your treatment to reduce repeated travel.

• Request virtual follow-ups after in-person visits.

• Speak with a social worker or patient navigator about transportation and financial support options.

Build your support network 

Your IBD care extends beyond the exam room. A support community can help you manage symptoms and feel connected. 

These free resources can help you build a supportive, reliable, and empathetic community of care: 

• Information specialists at the IBD Help Center

• Community and support resources from the Crohn’s & Colitis Foundation

• Patient and caregiver education programs sponsored by MyIBD Learning

Ready to take the next step on your care journey? Check out these tips for communicating with your care team.

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