Crohn's Disease. What does it mean and what is it? A question I have been asked more times than I can remember in the last 4 years. But as I type, I still know some are unaware of what it means; allow me to explain.
Crohn's Disease is a digestive issue caused by your body attacking itself, it's an auto immune disease that affects the mouth to anus. Some go their life on no treatment, only treatment, just surgeries, or as in my case, both. But why am I even writing about a disease I have you ask, to spread awareness of what is, what it does to yourself, and how you can cope and help those who suffer from this shitty (pun intended) disease.
My first surgery was in February of 2012. Not only was it my first surgery, it was also my first IV, hospital stay, and first time on pain killers. I could hardly walk and it felt like I was dying every time I took a step. I felt swollen in places that should never feel that way.
I still went to school and still spent my day miserably at a school field trip. Once I got home my mom took me to the local anyone-can-get-in doctor office who not only didn't charge us but sent me straight to the ER.
First CT scan, first major anxiety attack, first IV and some pain killers later, I'm rushed to the hospital for emergency surgery. I can't tell you what I was telling nurses before I went to sleep, but I know I woke up confused and in pain. The next day I experienced the worst pain of my life. I had dried gauze about 10 inches long pulled from a 1 inch incision on my butt. I screamed and kicked, and immediately apologized as I started a body shaking cry. I have never screamed at people the way I did these nurses trying to help me. I regret treating them like that every day.
Months later I graduated my senior year. As I was preparing for my first job in July I came down with what I thought was a stomach bug. Stomach pain, fevers, and throwing up. But something wasn't right.
As we go to the ER for the second time that year, I was told I have a fistula. (Now, a fistula is an abnormal connection between two systems in your body, I had one from my intestines straight to my butt cheek making pus pool causes abscesses.) I was once again sent to the hospital and stayed for a colonoscopy.
They said I had Crohn's Disease, I had no idea what that was or how it was going to affect me. They wanted to start a treatment that my insurance would only pay for as an out patient thing so I was discharged. Ignoring my complaints of a pounding headache and a blood pressure that was way too high I went home to my family to start my treatments the next day.
It was nice to be home again, with my family not driving to see me and getting to see my baby niece. I made my way to the bathroom and dropped my phone as soon as I sat on the toilet, no big deal I'll just get it. I watched as the floor sunk further away from me and my hand raise up on its own. I woke up on the floor and my family crying. My aunt had just preformed CPR on me. I was blue, bleeding and had a seizure.
The ambulance arrived and I had two of the worst EMTs I've ever dealt with. They made me walk to the ambulance because I was too aware to need to go if I didn't want to. I went because I woke up on the floor after going to the bathroom, something wasn't right with me. Finally I made it to the ER and I had another seizure while retelling my story of the first.
My hours and days blurred together, I couldn't breathe. All I can think of at that time was being unable to breathe. I was suffering and my nurses didn't seem to care. My mom called my granny and aunt early in the morning and they rushed to me. Then I don't remember much. I was put out and on a ventilator. My heart was failing and I wasn't going to make it, my mom knew she'd have to bury her 18-year-old, newly graduated daughter. Luck for me, I was transferred hospitals.
In October I ended up have my first surgery at my new hospital that's now my home away from home. I had 2 parts of my intestines and my appendix removed. It was supposed to be a laprascopic surgery, but I had intestines that had collapsed onto my ovary and I had to be cut open.
As of October 16th, 2012, I had a definite answer, I have Crohn's disease. I stayed for what seemed like years before I was finally able to make it home.
2013 came with more tears and surgeries. My papaw, the first man I ever loved, got sick when I did. It was a constant juggle of who would be home and who wouldn't. He was in, I was out. He was out, I was in. We hardly saw each other and when we did we cherished our time together. We understood each other's pain and struggling. We laid and cried together because we were so tired of fighting. Tired of living. Yet we still fought on, a pinky promise and a hug later we got up and decided we couldn't give up on our struggles. Not yet.
He got diagnosed in August of 2013 with stage 4 cancer. He died in September of 2013. My world stopped turning. My disease was going to win. I couldn't live if he didn't. I cursed at God for taking him and not me. He had more to live for than me, how was it fair to take him? Our pinky promise was in the back of my head and pushed me on. I have never broke one, I sure as hell didn't plan to break ours. One funeral, some more small surgeries, and a lot of crying later I survived again until 2014.
2014 was uneventful honestly. Small surgeries here and there. Failed treatments and way too many er trips to even count. I was still walking through a daze. I was alive and suffering while looking "healthy", but was dying on the inside. It just wasn't worth my time.
2015 rolled around and some things finally changed. More surgeries and treatments, but I finally found something to ease the depression of the disease enough to feel okay. A boy who just happened to be at the right place at the right time. I've known him since high school. He looked a lot different than when I saw him last. Bright blue eyes shining like the stars I looked up to every night, his long brown hair finally cut short, and a smile that lit up the darkness I had been living in.
He accepted me. Disease, surgeries, medicine, doctor visits and all. He accepted me. I've never thanked him as much as I should have or still should do, but he finally made me feel like a disease i never asked for just made me more of who I was growing to be.
I've gone through 4 treatments, 9 surgeries, 2 jobs and a whole hell of a lot of pain meds to get to 2016. Was it an easy ride? Hell no. Did it make me a better person? Maybe. Do I over share about me having a "shitting disease", definitely. But I still get my story out.
Struggling with a disease has made me suffer from a pretty nasty depression. A lot of the times I don't know where the disease and depression ends and I begin. I never feel the prettiest, I'm self-conscious of my scar down my stomach, and worst of all I feel as though I will never be worthy of love from someone who understands. But things can always change.
This isn't all about how this disease has brought me down, it's the opposite actually. I'm stronger from what I've gone through. Braver than I ever knew I could be, you can't make some of these decisions not knowing what it could do to you. I've even managed to find someone who truly loves me, disease, scars, depression and all. That's why I wrote this story. It's not all sunshine and rainbows. Sometimes it rains so long you forget what the sun light looks and feels like, but it will always shine again.
