Early in 2016, I began to experience severe stomach pains, especially after I ate. I stayed quiet about it for almost two months until I realized that these stomach pains were affecting how I was eating and that they were getting to the point that I was in tears. I mentioned it to my parents but they just waved it off and thought it was my acid reflux.
The pain got worse, and one day it just took me to the floor. My parents took me to the ER, but it seemed like the doctor there wasn’t taking me seriously. After a CT scan (which looked normal) and some bloodwork (which showed elevated white blood counts), I was admitted. I had bouts of pain off and on and had to have morphine to control it.
My symptoms made the doctors suspicious of appendicitis, so I had to have an ultrasound, which felt like a million needles stabbing me as the tech pressed on my belly. After the ultrasound, I finally had an appetite, only to have my mac and cheese whisked away as my nurse told us that I needed surgery to remove my appendix. The surgeon noticed that my appendix was not inflamed at all and was as healthy as can be, but my intestines were very inflamed. The surgeon recommended that we see a pediatric gastroenterologist.
This was not good news--we all thought for sure that I had appendicitis and that the pain would be gone after surgery.
I was transported to Children’s Hospital in Omaha by ambulance, and we then met with Dr. Vanderhoof and his nurse practitioner, Rosemary Pauley-Hunter. We showed Dr. Vanderhoof the pictures my surgeon took of the inflammation in my intestines. He didn’t look at the pictures more than 2 minutes before he had a diagnosis for me. “It’s Crohn’s Disease.” When I heard those words, my first thought was, “What is that?” He explained it as a disease that causes inflammation in the intestines and severe pain when digesting certain foods. He then said, “This disease is incurable,” and that is the exact moment I realized that my life was going to change forever. A gazillion questions ran through my head. “How did this happen to me? Why? Am I always going to be in pain? How is this going to affect my health later in life?”
I started a steroid to help the inflammation in my intestines and also took hydrocodone to help manage the severe pain. I was taking 13 pills a day when I was released from the hospital, so I was always checking the clock to take my meds, and I had a lot of doctor’s appointments. About a month later, I began feeling much better. I was still living with pain but it never got really intense. My face and body became very puffy from the prednisone, and I looked like a different person. I became very self-conscious because I didn’t feel like myself anymore. I stopped some medications but also started new ones. I became scared and overwhelmed with everything being thrown at me, along with getting caught back up in school. I remember thinking to myself: “This is what my new normal will be, but everything will be okay.” When you are standing right in front of a box full of syringes, fear can, and will, get the best of you.
Dr. Vanderhoof was confident that I had Crohn’s Disease but we had to know for sure, so I had to do a colonoscopy and an endoscopy. The pre-prep for this was awful! I had to completely clean out my stomach and intestines before the procedure so they could get the best image possible. It was not fun! After the procedures, I was officially diagnosed with Crohn’s Disease. The next step was to start treatment to try to get the inflammation under control so I wasn’t experiencing so much pain all the time. I decided to go with an injectable pen my parents and I could do at home. My first injection was very traumatic. The shots were so painful and I had to do four shots total, two in my right leg and two in my left leg. Eventually, I only had to do one shot every two weeks, but my anxiety was horrible before the injections, and I began taking anti-anxiety medicine to help me calm down.
I was back to MY normal for the next few months. I still had severe pain off and on. Many of my peers were starting to say that I was just saying I was in pain for attention, and hearing all this negativity was bringing me a lot of stress. Stress can easily cause a flare (pain) at any moment, so I try to control my stress and try not to listen to the naysayers.
That fall, my medication didn’t seem to be working as it should have been so we had to move on to plan B. My doctors thought my best option was to remove the bad part of my intestines so all of the active Crohn’s would be removed. My mom and I met with the surgeon that was going to perform the surgery on me. Surgery was scheduled for Dec. 21, and we just prayed that the pain would remain controlled until that date.
In November 2016, I began to have severe pain again, but this time it was different. The pain was constant all the time, and I couldn’t keep any food or drink down. I went from the ER in Lincoln to Children’s Hospital in Omaha by ambulance once again. I had to have an NG tube placed because I had a lot of bile and backed up feces in my stomach, and it was making me really sick. I got worse instead of better and needed another CT scan, which showed a complete blockage, not only in my small intestines but also my lower colon. I had a fever, was very sick and in extreme pain to the point that I couldn’t even talk. At this point, emergency surgery was the only option, and I had 12 inches of my small intestine and 6 inches of my colon removed. There was a possibility of me coming out of surgery with an ostomy bag.
After surgery, my whole body ached and the new, bigger NG tube in my throat hurt so badly, to the point that I couldn’t talk. I was really scared to move because I didn’t want to mess anything up. I had another surgery to get a picc line in my arm and spent Thanksgiving in the hospital. I was lucky enough to have my parents, brother and grandparents there with me. While my family ate a thanksgiving meal, I feasted on a purple Popsicle because that was all I could eat at that time.
A few days after surgery, I tested positive for Clostridium Difficile Colitis or also known as C-Diff. Once that was treated, I finally started feeling better. The feeling of being able to walk outside after spending two weeks in bed in the hospital was the most amazing feeling in the world. It felt even better to see all of my friends who supported me and loved me no matter what.
I was in remission from December 2016 until the end of 2017. Recently, my symptoms started back up and I’ve had to switch to a different biologic medication. I still have to take a painful injection every two weeks, and I don’t feel 100% yet.
As I’m sitting here writing this, you may think Crohn’s Disease is this awful, life-changing disease; and truthfully it is. But it’s how you decide to handle the disease; how you decide to tackle the disease; fight the disease; and win your life back. I’m proud to say I’m not only a survivor of Crohn’s Disease, but also a fighter and a stronger person because of it! I wouldn’t be anywhere near remission if it wasn’t for the amazing support from my friends, my cheer girls and my hockey families and of course, my family. I am so thankful to have such an incredible amount of love and support from everyone. Its helps me feel like I’m not fighting this rough battle alone!