Living a Life with Crohn's Disease
It was towards the end of the school day in fifth grade and we were watching a movie when I got terrible stomach cramps. With two older sisters, I thought this meant a certain aunt was coming to visit. Little did I know, it was something much different.
Fast forward to seventh grade and the stomach pains got worse. I remember lots of doctors visits and even more tests. Their conclusion was that I had Irritable Bowel Syndrome . At this point, I began to learn to live with it. The stomach cramps, the bathroom visits, the feeling of not being able to recognize what was happening in my body as a young teen, the tums & pepto bismol, the fatigue...it all became a part of me.
This is MY Crohn's story, MY Journey, My Experience
In case you don't know, Crohn’s disease is an inflammatory bowel disease (IBD) that causes chronic inflammation in the gastrointestinal (GI) tract.
In high school, I got real good at hiding my pain, partly because I was embarrassed and partly because nobody wanted to constantly hear about my stomach issues. But there was also a lot that I couldn't hide. I was {and still am} one of those people who always takes on a lot...I was very into my academics, involved in the student body and played basketball. My best friend became real familiar of going to the bathroom with me and making lot of noise in the bathroom so I wouldn't feel embarrassed. I also struggled with anxiety and it wasn't until later that I learned about the correlation with anxiety and Crohn's disease.
My senior year of high school was rough.
The stomach issues intensified. My final year of playing basketball was ending and it was hard. There were times I had to run to the bathroom in the middle of practice or during a game. 15 years later and I am still harboring some teenage drama that came about from a girl telling my coach I was faking it. In one of my last games of the season, I was foggy. After the game, I threw up.
Shortly after the season ended, I got sick. I was always the kid with perfect attendance so this was not like me to miss school. The first few days, I still went for first period AP Calculus because AP tests were coming up and I didn't want to miss anything. After a week of being sick with no sign of getting better, my mom took me to urgent care. Later that night, they called and said I needed to go to the ER due to my high number of white blood cells and they thought it could be appendicitis.
I spent a week in the hospital getting tests done to see what was wrong. They attempted a barium swallow and x-ray that failed as I threw up after drinking the barium and could barely stand from being so weak and losing weight. They attempted a colonoscopy that failed because it was so enflamed that they couldn't get the camera through. Their last option....surgery. At this point, they concluded I had Crohn's Disease based on my history and having a grandma with Crohn's and a great aunt with Ulcerative Colitis. The only way to know for sure would have been one of those failed tests or surgery. So surgery it was. March 15 2006, they went in, took out a chunk of my small intestine and officially diagnosed me with Crohn's disease.
I spent another week in the hospital recovering with an 8 inch scar down the middle of my stomach. I then spent the next 2 months at home recovering. It was an interesting time. Not only was I just diagnosed with Crohn's, but I was also missing 2 months of my senior year of high school.
Fast forward a few months into college and the medication they put me on after surgery wasn't working. I found a new doctor and based on my levels, he wanted to put me on Remicade {go in for an infusion every 2 months} or Humira {give myself a shot every 2 weeks}. No way I could give myself a shot, so infusions it was.
College was a challenge for me.
I was trying to figure out life with Crohn's while also life at college. Growing up in the same town, I had the same friends my whole life. I am a huge introvert so socializing was both emotionally and physically exhausting. I struggled with figuring out my diet. One year I basically didn't want to eat anything because that made my stomach feel good, but then that led to body issues. The next year I said F it to Crohn's and ate it all, drank it all. The depression was there. Anxiety was a norm for me, I didn't know a life without it. But depression was new...and scary. College was hard, so hard.
The journey to the real world began.
I was able to start classes for my credential my senior year of college and got a teaching job right away. At this time, I switched from Remicade to Humira and started giving myself a shot every 2 weeks. Life after college at the beginning of my career was...interesting. I was adjusting to being a math teacher, finishing up my masters degree, navigating a serious relationship, and still figuring out life with Crohn's.
There are things that people don't realize with Crohn's, most people know about the literal crap and that's all they think of.
But there is so much more. This is my personal list {other people with Crohn's experience more or different things}: fatigue {I could list that 1,000 times}, joint pain, bloating {like every day because something that you ate the day earlier that was fine is giving you problems the next time you eat it}, holding in gas that can lead to hours of pain, and skin issues.
Fast forward to now, 11 years into teaching and 15 years after being diagnosed with Crohn's disease. I am still giving myself a Humira shot every 2 weeks. Life has drastically changed...for the better. My husband and I got married 8 years ago and now have 2 amazing daughters {5 and 2}. I now work from home for a virtual school because 1. I want to be home with the girls and 2. There is no way I could teach in the classroom all day and then come home and parent, my fatigue wouldn't allow it.
Let's rewind and talk pregnancy real quick.
Both of my pregnancies were amazing. My doctor told me that if we conceived not during a flareup, then I could have a normal pregnancy. And that is what happened for me. It was as if my Crohn's was gone. I definitely indulged and enjoyed every second of it...give me all the fried donuts.
And then I gave birth...and Crohn's laughed in my face, coming back full force. Breastfeeding gets your bowels going, let me tell you. TMI for you but I got real good at breastfeeding the girls on the toilet. It took a while after each birth to get it back under control, but eventually, it did.
Here I am today, a 33 year old woman, navigating life as a wife, a mom, a teacher, a DIY'er, and as a person with Crohn's Disease. I have not had red meat in 15 years. Dairy gives me all the gas. Salads are a bathroom sentence. Popcorn is something I willingly live through the pain for. There are lots of good days and there are lots of bad days. It has taken me years...years...to finally feel confident. There is more to my Crohn's story...there's prednisone, there's nausea, there's panic attacks...but this is enough for now.
Thank you for being here! And if interested, I share what we eat for family meals here.