The No Gluten Girl: Rachel's Crohn's Disease Story

ulcerative colitis blogger

Her Story

My sophomore year of High School was when I knew I wasn’t myself anymore. It felt as if I had a never-ending stomach flu. I stopped going to lacrosse practices and started getting vials of blood drawn. I started spending hours in doctor’s offices instead of classrooms. They had to put me on homebound instruction because I was too sick to get out of bed let alone make it to school. For about 2 years, nobody knew what was wrong with me. I remember laying on my bedroom floor and crying for help. The pain was too much to handle and I was taken to the emergency room and hospitalized for 2 weeks.  My time in the hospital was a wakeup call. My mom and I decided that maybe, after all, the doctor’s might be missing something. We took matters into our own hands, contacted a new Gastroenterologist, and scheduled a colonoscopy. When I woke up from the procedure, I heard the doctor say “The test revealed nothing.” Defeated didn’t even begin to describe it.  A few days later, I got a phone call that changed everything. My new doctor reported that a further biopsy of the colonoscopy revealed that my inclination was right all along; there was something more. He said it was Crohn’s Disease, and described it in a way that fit every single one of my symptoms. I immediately hung up the phone, googled “What is Crohn’s Disease”, (even though I know now that WedMD is not my friend) and told myself, “This makes sense. This is my answer.”

Accepting Her Diagnosis

At first, my diagnosis was almost a relief.  I had been searching for answers for so long and no one knew what was wrong with me. I finally felt validated. I thought I could easily accept it because it was an answer. When I got to college, though, that’s when it became difficult for me to accept my diagnosis. I wanted to be like everyone else who was going out and drinking and eating mozzarella sticks until 4 in the morning. I tried to pretend like my diagnosis didn’t exist so that I could feel “normal,” even though I knew deep-down what had the power to heal me vs. hurt me. That period of denial led to my first flare in college, which is what led me to truly change my lifestyle and my mindset around IBD. I was forced to face the fact that have Crohn's Disease. I was forced to realize that my definition of normal will never be like anyone else’s. Accepting your diagnosis isn’t something that happens over night. It takes time, trust me. But, when I slowly began to embrace what made me different, when I began to own the fact that, hey, I have Crohn's Disease and I am that girl who can’t have gluten, that’s when it all began to change. I started doing everything “right.” I watched my diet, I took my meds, I practiced every holistic approach in the book. Yet, here’s the kicker. After two years of having been flare free, I am now faced with a new, deeper level of acceptance that I must embrace after two recent flares this year. Two must be my number or something. IBD can be unpredictable and it can have a mind of its own. I’m now learning how to accept the idea that, while some things may be out of our palpable control, there are a lot of things that we CAN control. Our true power lies in our ability to control the way we respond to what’s happening. After all, that’s all you can do.  

Tati’s Top 3 Tips For Women Living With IBD:

  1. It’s okay to let yourself feel all of the emotions. Do that, and then use them as the driving force to tackle what’s in front of you: when you’ve gone through hell and back with IBD, the easy thing to do is to give in and accept defeat. There are times when I want to let the anger and the frustration consume me, but I know I can’t. Yes, I let myself feel really angry and really frustrated, but then I use those emotions to pick myself back up every time I’m knocked down and keep on fighting.

  2. You know your body better than anyone else, so be your biggest advocate: with IBD, you become so incredibly in tune to your body. In a way, it’s a blessing and a curse. You’re forced to feel and analyze every symptom, but you also learn how to become an advocate for yourself and your health, because you know your body better than anyone else. Listen to what your body is telling you and fight for it until you have the answers you deserve.

  3. Your healing process may not be linear, but healing will happen: that’s the thing about a chronic illness. It comes in waves. Healing your body isn’t a linear kind of thing. It takes time and there will be really good days and there will be really bad days. So, remember this: bad days don’t mean that everything is bad, and even on those bad days, you’re learning, which, in a way, is still moving you forward. We can let our setbacks define us, or we can choose to rise up and keep going, trusting the fact that we’re doing all that we can. Your body hears what your mind says, so be kind, gentle, and patient with yourself and your healing process.

Rachel’s Favorite Mantra/Quote To Get Her Through the Hard Times:

“She believed she could so she did.”

ulcerative colitis blogger

My name is Rachel and I am an IBD Warrior Woman