‘No cure? Like forever?’ I’ve been shot in a drive-by shooting, and I’d still take that pain over Crohn’s. I was so angry.’: Young woman learns to live with invisible illness, ‘It’s not the end of the world if you have to pull over, or ruin a pair of pants’

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“It was my senior year of high school. Life was great, I had friends, a boyfriend, a job, my grades were good, and I had a plan to attend a university after school. Everything was ideal. Suddenly I became ill, and I had a hard time making it to school and work. I could not keep any food inside of me (from either end). I was losing weight and energy and losing it fast. There was one evening, I remember the weather was so nice and my boyfriend, all of our friends and I, went to a restaurant on the waterfront for dinner. Afterwards, my boyfriend took the long, scenic way to bring me home, I was in intense pain and I could tell I needed to get to a bathroom. We finally arrive to my driveway and he insisted on walking me to the door, not realizing I was ready to sprint, and the minute I shut the door behind me I projectile vomited all over the entryway. I felt immediate relief but holy smokes it was the longest car ride of my life. Thank the Lord no one saw me. I maintained a solid lie for a long time in all my relationships, I’d tell everyone, ‘Oh, I just throw up when I eat something I shouldn’t, it’s normal.’ I made them believe it wasn’t also simultaneously coming out of the other end like google tells them it does (insert awkward smile here).

Courtesy of Maizy Dunn

I have an insanely high pain tolerance but this pain would leave me in tears and in my mother’s lap at 17 years old, and that’s when we knew it was time to go to the doctor. Mind you, I’ve had my tonsils out, I’ve been shot with a .45 in a drive-by shooting, and I’d still take that pain over Crohn’s pain any day. I wouldn’t wish it on my least favorite person. I was doing anything I could to prevent it. I had already tried cutting out dairy, and it didn’t work. I cut out gluten, and it didn’t work either. I was left craving mac and cheese and feeling annoyed. My amazing doctor listened to me and took note of what I’d already tried and immediately referred me to a gastrointestinal doctor.

After my visit with the GI doctor, things moved fast. I was scheduled for a colonoscopy and an endoscopy at once. For whatever reason it embarrassed me, a lot. I told my friends and my boyfriend it was just an endoscopy and downplayed everything. I remember sitting at Red Robin telling everyone, ‘Oh, I’m just not hungry, I don’t feel like eating,’ when in reality I was cleansing for my upcoming colonoscopy. So, at 17 years old I’m doing what you normally don’t have to do until you’re in your 50’s. Everything following the procedure is a little fuzzy, I’m told by my wonderful father who was my designated driver, afterward we met my doctor in a meeting room and he very quickly and confidently stated, ‘You have Crohn’s disease, without a doubt.’ However, because I was kind of loopy, I didn’t truly hear it for a couple days until I asked again. I guess my dad thought I was in a better state of mind after the procedure than I really was…surprise!

Courtesy of Maizy Dunn

‘What the heck is Crohn’s?’ I’d literally never heard of it, but now I have it. ‘Wait what? No cure? Wait, hold on, chronic, like forever?’ I was so angry. I became angry with the world, thinking why, why, why! I had no idea where to start. If you’re like I was and you’ve never heard of Crohn’s disease, it is an inflammatory bowel disease which can involve different areas of the digestive tract, depending on the patient. To make a long story short, my body can’t handle certain foods, I’m not able to digest them, and I get a lot of diarrhea.

It’s not as simple as just a google search. Everyone with Crohn’s has different ‘trigger’ foods. There’s a few things which are pretty self-explanatory which are somewhat common across the board, like avoiding high fiber foods, nuts, beans, and things of that nature. To this day, I’m still learning what I can and cannot eat. I began my journey of trial and most of the time error, and boy was it fun. I’m 24 now, soon to be 25 and I still have no idea what I’m doing. When people ask me, ‘What’s safe for you to eat?’ I usually just default to listing what I CAN’T eat because I honestly don’t know the answer. There are things which seem dependable but once in a while they turn on me and I’m left wondering what went wrong. Was it how I cooked it? Was it because I had it two days in a row? It’s such a challenge.

Courtesy of Maizy Dunn

I know this much, I cannot have raw vegetables, most fruit (but I can have applesauce), ice cream, heavily fried food, tomato sauce (but I can have ketchup), nuts, popcorn, fruit juice, excessive amounts of sugar, and the list goes on and on. I haven’t had a freaking banana since 2013, and do you know how badly I want a Dairy Queen cookie dough blizzard? I would consider chopping off a toe to have one…I mean I’d still have nine others, right? There’s been countless times I go to a restaurant and order the same sandwich I’d make at home and things still go south so you can understand why my list of available dining locations is limited.

It’s been quite the journey regarding my health, my relationships, and self-care. I have had a wild ride trying foods, explaining my issues to new people in my life and trying to remain positive and stay in control. After my diagnosis, I became a homebody. I needed to be near a toilet, always. I never really wanted to go out and do anything or be too far from home. My boyfriend and I broke up, I think I got too boring for him. We were young and he wasn’t willing to take the time to let me overcome what I was going through, but it’s okay, I forgive him even though it was difficult to be left during such a life changing diagnosis.

Courtesy of Maizy Dunn

My friends tried their best to understand. How do I explain, ‘Hey, we have to go back to the same restaurant we went to two weeks ago because I know for a fact I can have french fries there, and I’m not sure I could have french fries at the new restaurant five blocks away.’ It’s a hard concept to grasp, trust me I know. Throughout the years I dated and re-explained my disease over and over, I was accused of things like, ‘You just want pity. You’re lazy.’ I was made to feel unworthy.

Crohn’s is sneaky; it creeps up on you from all different directions. It also causes more than just digestive issues. I experience a great deal of fatigue. I’m told stress is a huge trigger, but how can I not stress about the disease itself? Exercise can also be a trigger, the disease can cause dental issues, and my hair to fall out. I’m on medication which will damage my body over time. There are just so many other factors people don’t realize and just because I’m strong doesn’t mean I’m not feeling it. Crohn’s is an invisible illness but I am far from invisible. At the end of the day I know now those people I lost who were growing inpatient while I tried to find my new path with Crohn’s weren’t worth fighting for.

A bad day with Crohn’s looks like: trips to the toilet every 3 minutes, canceling plans, missing work, and crying in pain. I used to starve myself. I’d eat a handful of goldfish crackers just to tide me over if my stomach was growling, and then I could go out to the bars with friends, I basically would not eat and fill up on alcohol instead, which was stupid, and a waste of money. Hindsight is an amazing thing.

My days look a little different now, I have a lot more responsibility at work, and I plan my eating around meetings because I can’t afford to miss them. I meal prep so I don’t make dumb choices from the vending machine which could backfire. I’m in an amazing relationship with a man who loves eating the same tacos every other week from the same happy hour down the road, but also isn’t afraid to tell me he’s going to eat something new without me…and I’m okay with it! I can tell him when I need to go to the bathroom and I can openly explain how I’m feeling without being embarrassed or ashamed. I’ve become a bit of a homebody once again, as the mentality that I can’t be far from home or on a long car ride without a toilet is still debilitating. I’ve missed out on a lot. Traveling is a nightmare, motherhood scares the crap out of me and I fear I will hold not only myself back but those I’m closest to as well.

Courtesy of Maizy Dunn

A few months ago, I decided to create an Instagram page so I could connect with other young women with this crappy (haha, get it) disease, and I’ve discovered this supportive community who rallies around each other and supports one another. It’s beautiful. As of today, I give myself an injection every other week and even though remission is the goal, once it is achieved it still doesn’t mean I can finally eat ice cream or a salad. I have to do what I have to do. I’m going to Mexico in a few months, what if the medication still isn’t working? What if I get worse? Does Mexico have Jimmy John’s!?

I’ve always lived by the phrase, ‘Everything happens for a reason.’ I have a tattoo down my spine which says, ‘Your faith has to be greater than your fear.’ I truly do have faith. I was chosen because I can handle it. Had it been someone else, maybe they couldn’t, and maybe it would be worse. Often times I handle it in silence and I bottle up my feelings, but my Instagram page  has given me an amazing outlet where I can just spam the heck out of my followers about my feelings and what I ate for dinner, what my day looks like, how sleepy I am, and basically anything else I want.

Courtesy of Maizy Dunn

I’m thankful for all I’ve faced and I’m proud to say I’ve overcome so much already. I look forward to tackling what’s to come. My advice for those diagnosed with Crohn’s is to be honest with how you’re feeling. Know your limits, do what you need to do to feel better, and be selfish. Find the healthy balance between resting and pushing your body when you can, it’s so important not to limit yourself and become accustomed to the ‘I can’t’ phrases. Don’t overthink, you will, but try not to. I’d be lying if I said I didn’t think about how my stomach will feel on my wedding day, how I’ll get my children to school in the morning if I’m stuck on the toilet, or even how I can get through busy traffic on a weekday after work. Just remember that it’s not the end of the world if you’re late, if you have to pull over, or if you ruin a pair of pants. It’s just a sh*tty day, not a sh*tty life (shameless pun intended).”

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Courtesy of Maizy Dunn

This story was submitted to Love What Matters by Maizey Nunn of Tacoma, WA. Follow her on Instagram. To find out more and Crohn’s disease visit the Crohn’s Colitis Foundation. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

Read more inspiring stories about living with Crohn’s Disease here:

‘It must be stress’. The doctors made me feel I was making things up. This was all in my head, and I’m just wasting their time.’

‘I went to the bathroom 10-12 times a day. Each time, I sat crying and begging for it to be over. Then it was the last straw. I had it. My bottom ripped open after a 2-week recovery.’

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