My Journey with Crohn’s Part I: Diagnosis

I was diagnosed with Crohn’s in 2013, and it was a strange journey getting there. Any time you are sick or feel weird for a long period of time, you spend your days confused, wondering, anxious, and, usually, exhausted.

I had the weirdest set of symptoms that I had no idea were connected, so I didn’t know to tell doctors all of them. I assumed that because they were disconnected , I didn’t need to talk about them all. Boy, have I learned a lot about how to communicate with healthcare professionals!

In this post I’m sharing my journey to a diagnosis with Crohn’s disease. I don’t really know when it all began, so I chose to start my story in 2009 when I had my gall bladder removed.

2009 – Maybe the Beginning of My Journey with Crohn’s

Doctors looking at a scan
How I imagine doctors looking at the scan of my gall bladder

In 2009 I was eating a terrible diet – like, multiple bacon cheeseburgers with fries a week. Some Skittles and a Dr. Pepper were my idea of an afternoon snack. I shudder at the thought today. I never exercised; in fact, I was proudly stationary. I’d almost go out of my way to be lazy. When I started getting abdominal pain, my doctors found that my gall bladder had gone kaput, so they took that bad boy out.

I continued to eat terribly, not exercise, and not get enough sleep. It was all I knew, so it’s hard for me to determine if I was starting to demonstrate Crohn’s symptoms or if I just treated my body terribly.

2010-2011 – Big Lifestyle Changes

I learned that eating huge bowls of vegetables made me feel great

I was fine for quite a while after having my gall bladder out. Then, in 2010-11ish, I watched a segment on Ellen with Kathy Freston who wrote a book with a ridiculously LA title: The Quantum Wellness Cleanse. I didn’t know much about food back then, so it piqued my curiosity. In this cleanse, you cut out five things for 21 days:

  • alcohol (fine, I don’t drink much)
  • caffeine (also fine, I don’t drink coffee often)
  • sugar (okay, getting harder)
  • animal products (but what will I eat?!)
  • gluten (what the heck is that?!)

That’s a lot of stuff to cut out when you eat the standard American diet of processed junk food and don’t know how to cook. As I listened to Kathy explain the cleanse, I heard this voice saying, “21 days isn’t that long.” so I took the plunge. I bought the book and went grocery shopping. There were recipes included in the book, so I started there. Because I didn’t know much about food or cooking, I ended up buying a lot of processed, frozen vegan food. The concept of buying fresh fruit and vegetables was so foreign to me, I didn’t know to start there. (I can barely recognize the woman in this story right now!)

At the end of the 21 days, my mind was clearer, my pants a tad looser, and I had more energy. The result that struck me most was how quickly I could make decisions. I had no idea the food I ate impacted that! Teachers make about a zillion decisions a day, so having a sharper mind and more energy meant I was killin’ it in the classroom.

I learned that cooking myself simple recipes from whole foods was my idea of a good time

While I reintroduced small to moderate amounts of alcohol, caffeine, sugar, and gluten, there was something to the vegan thing. I called myself “mostly vegan” because my kitchen was vegan, but then I would eat anything when I was out with friends or family. Over the next year or so, I fully transitioned to a vegan diet and learned to cook. Teaching myself to cook has been the greatest gift I’ve given to myself.

2012 – The Abdominal Pain Returned

In 2012, I started getting abdominal pain again, but I couldn’t find a pattern so I didn’t do anything about it. Then my joints started to ache. Then my eyes hurt – like, my very eyeballs would ache. I lost a lot of weight, I had terrible cystic acne, and my energy plummeted. It felt like I had the flu every day, but without the fever, cough, and runny nose. It was all I could do to get out of bed and go to work. For a teacher, writing sub plans is ALWAYS worse than just going to work sick, so I kept showing up looking like death and teaching.

It was all so confusing. I thought I had made all of these great choices for a healthy lifestyle, and I still feel sick and crappy? I had no idea this was moving me along my journey with Crohn’s.

2013 – Abdominal Pain Sent Me to the Emergency Room

My sister and I took a surf lesson the day after my evening in the ER. They gave me a ton of steroids so I felt GREAT.
My clothes look crazy because of how much weight I had lost.

On Spring Break in 2013, I experienced abdominal pain that had me in the fetal position crying and throwing up. I was in San Diego on a girls’ trip with my mom and sister. I thought I just needed to sleep, so we went to the hotel for me to rest, but once I began throwing up my mom rushed me to the ER. There, they put me on IV pain meds and sent me for a scan. The doctor came in with the results and told me I had inflammation indicative of Crohn’s disease, so I needed to schedule an appointment with a GI when I got home. They gave me some steroids, and the next day I was good as new. Took a surf lesson, even!

I had only known of one person with Crohn’s, and all I knew was that it took over his life. He couldn’t do much of anything because he was sick and pooping all of the time. The shock and anxiety of the possibility of having a chronic illness was paralyzing. All I could think was, “No, not Crohn’s. That’s a life sentence.” Or, “Come on! At least something like Celiac so all I have to do is avoid gluten!” I know now that I was beginning to work through the stages of grief.

Diagnosis

Back in Oklahoma, I saw a GI who told me he couldn’t do a colonoscopy for 6 weeks because the ER gave me steroids. Essentially, we had to wait for me to get sick again. 6 awful weeks later, I had the colonoscopy and he officially diagnosed me with Crohn’s in May of 2013. My journey to diagnosis with Crohn’s was complete.

It’s been a crazy road since that day. Working through my grief and finding my new normal with a chronic illness over the past years is what inspired me to create our community here at Balanced Life and Travel. I may have thought a chronic illness like Crohn’s was a life sentence, but now I know it’s just life altering. I can still live a life I love.

What was your journey to a diagnosis? Tell us in the comments. Share this post far and wide because we all feel less alone when we hear others with stories like ours.

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