Me and My Body: How Crohn’s Disease Helped Me

Most days I am a very smiley and peppy person. It’s pretty rare to catch me not smiling! I am so grateful for the life I live and the experiences I’ve had. I have a truly world-class husband and a family that loves and supports me unconditionally. But most of all, I am so grateful for my auto-immune disease, even though it beats me down many days of my life. I am so grateful because it gave me a passion for something I never imagined possible: health and wellness. I am obsessed with learning about everything wellness related and I have my life-long chronic illness to thank for that. My disease gave me a new perspective on diet, and introduced me to the world of gluten-free/SCD/Paleo, etc. These diets have helped manage my symptoms and have allowed me to live a more normal life, and I am forever thankful.

I would have never explored different diets without my diagnosis of Crohn’s disease. For years after my diagnosis, I ate strictly Paleo/SCD, but more recently I would consider myself 100% Gluten Free & Soy Free because I don’t limit my food groups as much as those diets. Over time, I was able to add foods back in and the benefits  outweighed the risks, at least for me, personally. For example, I eat cheese and gluten-free baked goods!

Anyway, back to the beginning of my story: I’ll never forget being in the hospital in October 2011 while my surgeon was determining whether to remove a foot of my small bowel. I wasn’t allowed to eat for 5 days, except for some ice chips here and there that I had to spit out most of the time. I remember being SO HUNGRY and in so much pain. I remember watching the TV and salivating at the Taco Bell commercials. I couldn’t wait to get out of the hospital and get some Taco Bell and maybe a donut. When I finally left the hospital, I had my mom take me to Dunkin Donuts and I ate my chocolate glazed donut like nobody’s business. And then, I immediately got SO SICK. I was doubled over in extreme pain. This started to happen often and I eventually surrendered to the idea of exploring and adopting a restricted diet. Spoiler alert: Now 7 years later, I still I never got that Taco Bell.

Crohn’s Disease is part of who I am. This has taken me many years to accept. About a year after my original diagnosis, I was off all meds and managed most of my symptoms with strict diet, or so I thought I did. Honestly, I often tried to pretend that I completely beat the disease and that diet was truly a cure-all. Sometimes I even believed my own lies. I would even secretly judge those who had similar health issues for not being able or willing to change their diet to help themselves. I am so ashamed of those thoughts, because everyone’s body is truly different and there is NEVER one sure way to better yourself.   But in January 2018, the year I was getting married, a doozy of a flare came that got the best of me. Since my original diagnosis in 2011, I have had what I like to call “mini flares”, but they were usually manageable and would eventually go away. Even when I had a mini-flare I would white-knuckle through my day-to-day obligations, even if when I was physically and emotionally exhausted. Yet this recent flare would not budge and white-knuckling was not an option. It knocked me down so hard. It stopped me in my tracks and I would literally fall to the ground, even in a public place. I had pain that I would not wish on my worst enemy. And the worst part about this pain, is that most people only saw my reaction to it, and I felt like a fraud. I felt like people thought I was likely exaggerating and I was embarrassed. My failing health was invisible to most, except to maybe my husband and mom who saw it in my eyes every day. People would ask: “What did you eat?… Did you eat some corn, some gluten?… You know you can’t cheat, did you cheat?.”  I was embarrassed and felt so angry.  I knew my body was failing me. Even drinking plain water hurt. I was harshly reminded that I shared my body with a life-long chronic illness that wasn’t ever going away. I was lost and so damn scared.

At the end of 2018 I got a new GI doctor, who I am extremely happy with. My Crohn’s disease is alive and well, but my symptoms are very well managed. Despite my desire to be med-free, I gave in and allowed myself to fully embrace science and allow it to help me, in conjunction with diet. My doctor was very understanding of my limits on what meds I was willing to try and we have been working on a plan that keeps my symptoms at bay.

I truly appreciate my body and I love what it has given me. It is constantly teaching me about who I am as a person. It has given me willpower, it has given me permission to listen to my heart, it has given me my endless pursuit of knowledge, and it has given me compassion for others in a way I cannot really describe. .

Cheers!

-Amanda