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.”
“The Complete Guide to Crohn’s Disease and Ulcerative Colitis” is available on Amazon. Be sure to check out Alexa’s awesome blog, Girl in Healing.
est to paint a picture for you. My legs feel like complete jelly. My brain feels in a fog. I feel so lethargic; the thought of showering seems overwhelming. I’m not in pain. My stomach feels fine. But, there’s something “off” and you feel it with every part of your being.
Living in the Midwest, I didn’t want two winter days with temps in the 80s to pass without enjoying them. I knew the fresh air and exercise would be a welcome excursion for my little man and me. Did those two walks with the stroller push me to my limits? What is too much? What is not enough? At 34, you feel lazy when you can’t keep up or have to admit you’re just too tired. You look perfectly fine on the outside, you feel like those around you wonder if you try and take advantage of your disease.
that stated, “Fatigue in IBD is experienced by up to 86 percent of patients with active disease and 41 percent in remission.” It’s crazy how common this is! For people with IBD, fatigue can be physical, mental or a combination of both.
As Valentine’s Day approaches and love is in the air, I’m choosing to look at my disease with my whole heart and to share my feelings with you.
I may have ended up marrying a person who really wasn’t about being with someone in sickness and in health.
There’s no sense in wondering and wishing for something that is not possible. Once you take a deep breath and stop living in your healthy past you come to realize that you were given this hand of cards for a reason.
You take those steps to heal. You focus on getting better. You do all you can to make it through. Crohn’s and any chronic illness for that matter gives you this opportunity over and over. So, while we all tend to have negative feelings about our health and worry about what the next hour will bring, try and pause and stop for a moment. Think about all the beauty and insight it’s provided—and love yourself and your disease for a second.
Three days later, at 10 pm the night before we were going to hang out, Amanda was admitted back into the hospital.
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