5 Online Resources Every IBD Family Should Know

Living with Inflammatory Bowel Disease (IBD) can feel completely overwhelming at times. Although the experience can feel isolating, please know that you and your family are not alone. Thanks to the internet, there are several incredible resources that are available to help you navigate life with Crohn’s disease or ulcerative colitis at the touch of a button. Educational materials, dietary guidance, personal stories, supportive communities, and even financial support are available through organizations, websites, and social platforms designed with you in mind! If you or your child are newly diagnosed with IBD, or if you’re facing a challenging period in your journey, it can be hard to know where to start looking for information. At IBD Connect, we do not want the challenge of navigating these resources to stop you from accessing incredible support and educational information. That is why we’ve compiled a list of five online resources that every IBD family should know about! The following organizations and advocates offer support in different ways, each one assisting with a specific need that an IBD patient or family may have. We hope this list of resources provides you with a well-rounded set of tools for your IBD journey, as well as facilitates a springboard for your own research into available resources! 

Before we get to the list of resources, please note that this blog post does not give medical advice and is not intended to be a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to you or your child's individual treatment plan, please seek out the professional medical advice of you or your child's doctor. Now, let's dive into our list! 

1. Crohn’s & Colitis Foundation

The Crohn’s & Colitis Foundation (CCFA) is one of the leading organizations dedicated to supporting patients with IBD.  According to their website, they “are a non-profit, volunteer-fueled organization dedicated to finding cures for Crohn's disease and ulcerative colitis, and improving the quality of life of children and adults affected by these diseases.” Their website is packed with educational resources, from information about treatment options to the latest research advancements. Besides patient and caregiver education, they also seek to educate healthcare professionals via their two scientific journals, health professional workshops, and their annual Crohn's & Colitis Congress conference. They are at the forefront of funding groundbreaking research to help develop better treatment options and, one day, find a cure for Crohn’s disease and ulcerative colitis.

Beyond education and research, CCFA also offers a supportive community through local chapters and support groups, online forums, and in-person events like Take Steps walks, which help raise awareness and funds, and Camp Oasis, a summer camp specifically designed specifically for pediatric IBD patients. The foundation also provides an IBD Help Center, where patients and caregivers can get answers to their most pressing questions. CCFA also advocates for patients by pushing for legislation that improves access to treatments and raises public awareness about the challenges of living with IBD. Finally, CCFA also offers a clinical trials community, whereby you can learn about ongoing IBD clinical trials and connect with those that are undergoing IBD research.

One more thing regarding the CCFA: if you (or your child) are newly diagnosed with IBD, their website has a page specifically for you! Their “Newly Diagnosed” page provides information educational resources, such as videos and pamphlets, as well as helps you to locate healthcare professionals, local chapters, and support groups. 

If you’re looking for up-to-date medical insights, ways to connect with others who understand your journey, help with specific IBD questions, or opportunities to get involved in advocacy efforts or clinical trials, the CCFA is an excellent place to start.

2. Nutritional Therapy for IBD

Nutrition plays a crucial role in managing IBD, but it can be challenging to figure out what works best for your body. Many IBD patients struggle with identifying safe foods, managing symptoms, and making informed dietary choices. Nutritional Therapy for IBD is an invaluable resource that provides science-based dietary guidance to help patients and caregivers explore different nutritional approaches, such as the Specific Carbohydrate Diet (SCD), the Mediterranean diet, and other food-based therapies.

This website not only provides research-backed resources but also features personal stories from patients who have successfully used diet to manage their symptoms. Additionally, their professional network connects patients with registered dietitians and healthcare providers who specialize in IBD. Their website even has a special “IBD Nutrition Navigator,” an evidenced-based tool that helps you determine a personalized approach to using nutrition therapy in conjunction with medication to optimize your health.

Nutritional Therapy for IBD also highlights ongoing clinical studies and the latest scientific findings on how food can impact gut health. Their website includes recipes, meal-planning guides, and webinars led by experts, making it easier to incorporate evidence-based nutritional strategies into daily life. Their social media platforms are consistently updated with recipes, research, and encouragement for your IBD journey. If you’re looking for practical ways to support your health through nutrition, this is a great resource to explore.

3. About IBD

About IBD is an online platform and podcast created by Amber Tresca, an ulcerative colitis patient and IBD advocate. With more than 20 years of experience navigating life with IBD, Amber shares personal experiences, expert interviews, and educational content that breaks down complex topics into easy-to-understand insights.

Her blog and podcast cover a wide range of topics, including treatment options, coping strategies, mental health, parenting with IBD, and patient rights. On her podcast, she also interviews other patients, caregivers, and medical professionals to ensure a well-rounded perspective on IBD. Amber’s content provides valuable information and fosters a sense of connection by sharing the lived experiences of others who have faced similar challenges. She covers topics that mainstream medical resources often overlook, such as navigating relationships, dealing with medical trauma, and finding strength in advocacy. Whether you or your child are newly diagnosed or have been managing IBD for years, Amber’s content is informative, relatable, and empowering. If you want a mix of education and real-life stories, and a way to combat the isolation often felt by IBD families, this is a must-visit site. 

If you would like to listen to the About IBD podcast, it is available on several different platforms, including Apple Podcasts, Spotify, Google Podcasts, Amazon Music, and others. 

4. Lights, Camera, Crohn’s

Another powerful patient-driven resource is Lights, Camera, Crohn’s, created by Natalie Hayden, a former TV news anchor who was diagnosed with Crohn’s disease at age 21. Natalie’s blog is a deeply personal and inspiring space where she shares the realities of living with IBD, from navigating flare-ups to the emotional and physical challenges of surgery.

Her content covers crucial topics such as motherhood with IBD, mental health struggles, maintaining relationships, and balancing a career while managing a chronic illness. She also provides advice on advocacy, self-care, and lifestyle adjustments that can help patients reclaim their confidence. Natalie’s raw, honest, and encouraging approach offers comfort and validation to those who may feel isolated in their journey. Her advocacy helps break the stigma surrounding IBD and reminds readers that they are more than their disease. She also collaborates with guest writers, healthcare professionals, and fellow patients to provide a well-rounded view of life with IBD. Many of her blog posts are also applicable to pediatric and adolescent IBD patients, such as a previous post that synthesizes information about college scholarships for IBD patients. Natalie is a trusted voice in the IBD community and is involved in several other pursuits in addition to her blog, including being on the Advisory Board for IBD Moms, being an advocate for IBD Social Circle, volunteering and being a spokesperson for the Crohns and Colitis Foundation, and more! If you’re looking for an uplifting yet realistic take on living with IBD, Natalie’s blog is one you won’t want to miss! 

5. IBD Connect

Last but certainly not least, our very own IBD Connect is here to fulfill our mission to support, engage, and empower pediatric IBD patients and their families. A diagnosis can be overwhelming, not only for the patient but also for caregivers and loved ones. That’s why we focus on providing resources that help both the patient and the family! We offer several different support groups options, both in-person and virtual, including family support groups, a caregiver support group, and a young adult support group. We also offer financial assistance, a scholarship program, volunteer opportunities, and even a welcome gift for new members and families. One of our most impactful programs is the IBD Warrior Bag Program, which provides newly diagnosed children with comfort items and helpful resources to ease the transition into life with IBD. Our blog is regularly updated with insights from healthcare professionals, practical tips, and personal stories from the IBD community. Whether you’re looking for information, support, or an understanding community, IBD Connect is here for you every step of the way. 

Final Thoughts

Managing IBD is a journey, and having the right resources can make all the difference. Each of these organizations and websites offers something unique, from scientific research and dietary support to personal experiences and community connection. The key to navigating IBD is education, support, and self-advocacy. These resources hopefully provide you and your family with all three. No matter where you and your family are in your IBD journey, you don’t have to do it alone. We encourage you to explore these resources, reach out for support, and get involved. Use these resources as a springboard for your own research to find other organizations and platforms that may be able to support you. The list of resources above is certainly not exhaustive; there are many other great organizations and platforms! Whether you or your child is newly diagnosed or have been living with IBD for years, there is strength in knowledge and empowerment in connection. Check out these websites, stay informed, and remember: you are stronger than IBD. As always, stay strong IBD Warrior families! 

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