Maizey Nunn - My IBD Story

Hi, my name is Maizey and I live in Tacoma, Washington, USA. In 2013, at 17 years old, I was diagnosed with Crohn’s disease. Before diagnosis I was experiencing a lot of stomach pain, many urgent trips to the restroom and major fatigue. These symptoms caused me to miss both school and work and the pain was unbearable to the point I was crying in my mother’s lap, which is very unlike me. Finally, after attempting to eat dairy free then gluten free and finding no success, I made an appointment with my primary care physician. It did not take long after describing what I was experiencing that I walked out with a referral to a gastroenterologist. Things went quickly after that, I was scheduled for an endoscopy and colonoscopy and those procedures showed pretty clearly that the result was Crohn’s Disease, without a doubt.

With my newfound diagnosis and warrior label, I began to Google. I had no idea what Crohn’s disease even was, what caused it, or how to subside it. I was so afraid to eat; I snacked all day on things like Pop-Tarts and Goldfish crackers, peanut butter and jelly sandwiches, and chicken nuggets. At that point, I knew I couldn’t have raw vegetables, popcorn, most fruit, nuts, juice, some dairy products, and the list continued on and on. My problem was that I wasn’t willing to try anything new. I knew I couldn’t have an apple so I crossed off pears too, that turned into axing bananas, grapes, oranges, any and all fruit, I sincerely don’t even know if I can or cannot eat those things, but it has been seven years without them and I am not willing to experience the pain that it could result in. Unfortunately, that is the case for many food items, I’m just too afraid to try, it isn’t worth it.

Over the years, my health and the anxiety it brings me has been a roller coaster, I fluctuate good days and bad days on both accounts. I used to travel, adventure, get out of my comfort zone, but that was on days I was basically starving myself to ensure I could do that. Now I’m still continuing to starve myself some days but it’s so that I can make it into a meeting at work without feeling anxious or through a car ride across town without panicking that my stomach could turn. At some point in the last two years, my anxiety heightened and my comfort zone closed in around me, this has been one of my biggest battles.

I’ve found ways to cope with the anxiety through controlling situations when I can. If I’ve made plans with someone somewhere I always meet them there, I try not to carpool. That way if I need to leave I can do that or if I need to pull over to use a restroom, the option is there. There are times when I literally speak out loud to myself in the car, “you’re almost there, you’re almost there”, to convince myself that I’m fine, I can make it to my destination without pulling over or without getting a stomach ache. There are also times when I cancel plans because of the overwhelming stress or anxiety it causes me, and I remind myself that it’s okay to cancel, it’s okay to miss out when you’re putting your health first. See, that’s the tricky part, Crohn’s can be triggered by stress but how do you not stress about Crohn’s?

As of today, I have not had any surgeries, I am thankful for that. I have switched from Remicade (Infliximab) infusions to Humira (adalimumab) about a year ago and so far the tests have come back great. However, my symptoms are not. I fully expected my recent tests to be a mess, I had a colonoscopy, blood work, and CT scan, everything was all good. It’s beyond frustrating, how can everything come back good when I don’t feel good? For now, my doctor and I are discussing the possibility of IBS (irritable bowel syndrome) in addition to Crohn’s and based on what I’m going through I feel that we are not far off.

Lately the days feel more challenging; I have a hard time wrapping my head around why I was given this path for my life. There are so many days that I vow to never eat out again after bad experiences, or only eat plain food for the rest of my life because it’s so much easier. It’s hard not to throw your hands up and just want to give up and cry on the tough days. Today, as I write this, I’m exhausted. I woke up at 2 AM. with awful stomach pains and numerous trips to the restroom. I made it through my eight hours at work and I am just beat. Autoimmune diseases can take so much out of you, they take your energy, your spontaneity, your confidence, peace of mind, and comfort.

I fear for the day I become a parent, how my health will impact getting my child to school or picking them up, how my lack of energy will hold me back from participating, or how I’ll miss out on moments because I’m stuck at home running to the restroom. I’m afraid of my upcoming plane ride to Mexico or even the car ride to and from the airport. I tend to live in a state of fear, fear of my own health and my body turning against me. 

I recently began an Instagram account, @chroniclesofmaizey, to have an outlet and be involved in a community that understands. I have found great support through this account, I’ve received recipes, holistic recommendations, words of encouragement, and have connected with people that truly relate. We are part of an amazing community, the invisible illness fighters, we have a strength that so many can’t even begin to understand. In 2020, I’m on a mission to be better, to push myself more, and to identify what strengths I hold to have caused me to be chosen for this journey.