When you’re diagnosed with inflammatory bowel disease, no matter what age or stage of life you are in, it’s a big shock. Navigating this newfound identity, label, diagnosis and these unchartered waters can be overwhelming. As someone who’s battled Crohn’s disease for nearly 13 years, I’m the first to admit, that first year was brutal. I recently read a book entitled, “The Complete Guide to Crohn’s Disease and Ulcerative Colitis”—A Roadmap to Long-Term Healing, by Alexa Federico. It’s a good thing “roadmap” is in the title, because that’s exactly how I felt while taking in each passage.
Alexa was diagnosed with Crohn’s disease at age 12. She’s now 23 and says, “A lot has changed since my diagnosis! My mindset is probably the biggest change I have gone through. I began this autoimmune journey as a child, holding onto a grudge against my body, bitter about the foods I couldn’t eat and the pain I felt. I felt like my body betrayed me and that I would be a victim my whole life. Over the years, I slowly started realizing that these lifestyle changes that I followed begrudgingly were the very things keeping me healthy. From there, I accepted my lifestyle and started to become interested in nutrition and other ways that people can influence their own health. Today, I couldn’t be more grateful for the path I have walked. I know my experiences and the knowledge I have gained have led me and my family to make smarter lifestyle choices and now I am helping others to do the same.”
No matter where you are along your patient journey, this book will speak to you. Whether it’s how to find a solid support system and how to detach from the “Negative Nellies” in your life or what types of alternative medicine and selfcare options are available—there’s something for everyone. I personally found the techniques for managing stress to be really beneficial.
In one passage, Alexa writes, “I want to stress to you this point: healing is more than a physical process. Once you have accepted IBD, it’s important not to dwell on “Why me?” Instead of focusing on what you can’t change (the fact you have this illness now), focus on what you can change. Your healing will be limited if you do not move past the pity-party stage. We all do it; just don’t make it your new life.”
That attitude. That perspective. That’s how I choose to take on Crohn’s. This book is helpful to not only those with IBD, but their caretakers, family and friends. It provides an inside look from the patient prospective, while showing that there’s a big world out there when it comes to healing, managing and feeling empowered every step of the way through your patient journey. I would have given anything to have had this book available when I was told at age 21 that I had Crohn’s disease.
Alexa says reflecting on her personal experience as a child being diagnosed with Crohn’s inspired her to write this book. “I remember my medical team in the hospital going over the diagnosis with me and my parents, but they gave us little direction to go in. We just had my prescriptions and a few words on dietary advice, but other than that, it felt like we were on our own to figure it out. Since then, I have learned so much and I felt like writing a book was the way to share it with people who are getting started on this journey.”
As a fellow patient and advocate, I can assure you this book is one that will educate you, comfort you and help guide you through periods of remission and flare-ups. It’s a reminder that living well with IBD is possible, but take taking on IBD is a multi-faceted approach.
“I want readers to feel a sense of empowerment after reading the book and realize that there are many ways they can control their lives. I want them to feel equipped to try out new health management strategies and determine what feels good for them.”