I am hoping to spread awareness about something that has become increasingly prevalent in my life within the past few months. I know it’s long, but please read my story and then Like, Share, and Comment on this post in order to inform the world about a disease that affects over 5 million people worldwide and is rarely talked about.
My name is Chayla Fisher. I’m 16. When I was 8 months old, I was diagnosed with called Ulcerative Colitis (UC), an autoimmune disorder in which my immune system mistakes food, bacteria, and other materials in the intestine for foreign or invading substances. When this happens, the body sends white blood cells into the lining of the intestines, where they produce chronic inflammation and ulcerations. My entire life has been filled with severe pain, discomfort, fatigue, increased frequency and urgency of bowel movements, bloody stools, and other debilitating symptoms. In addition, I have always had to watch my diet, control my stress levels, and take numerous harsh medications in order to reduce my symptoms.
I’ve spent the majority of my life hiding in the shadow of my disease, not understanding what was going on with me and not seeking support for dealing with it. I didn’t even know something was “wrong” with me until I was 14, and I had to take a medication called prednisone to make my symptoms better. Although this helped, it also had side effects, including weight gain and bone pain. I gained 60 pounds in one month, and with that, I lost all of my self-confidence. That year, I also found out about Team Challenge, a half-marathon training program that benefits the CCFA. A couple months later, I ran my 1st half-marathon in Kona, Hawaii. Since then, I have run 3 half-marathons and raised over $14,000.
Although I have been able to fight off the symptoms of my disease with mild drugs and diets for most my life, these past 10 months have been a horrible downward spiral. In May of 2014, my symptoms started up again, but I ignored them in order to finish my sophomore year of high school and continue playing soccer. Since then, I have had 3 hospital stays and tried numerous medications, all with horrible side effects. The worst being an antiTNF drug called Gulimimab (also a chemotherapy drug, used for treating cancer). When I was driving home from my 2nd hospital stay, I ran my hand through my hair and a clump came out. I watched my hair slowly fall out, clump by clump, until I couldn’t take it anymore, and I shaved it off.
I am writing this in the hospital bed that I have been lying in for over a month, hoping every day that they will find a cure other than removing your colon. I am on so many medications, I can’t keep track. I’m on my last resort med called Entyvio. It has been approved for adults, but not for children, so I am scared that something might happen. I’m building a tolerance to the pain meds and am still in so much pain. It’s hard not to cry from all of this.
No, I don’t have cancer. No, I’m not dying. No, I just have to take the medications that cancer patients do and suffer in pain for months in the hospital like cancer patients do. But I don’t get the compassion that cancer patients do. My disease does not get the publicity that cancer does. Most people have never even heard about Ulcerative Colitis. I am not the only one that has a story like this. UC is not a disease to be forgotten about, laughed about, or embarrassed about. It is a disease to be talked about.
Even though l lost my hair, have missed over 3 months of my junior year of high school, and have been stuck in the hospital for 35 days, I am trying to keep a smile on my face. I missed Christmas and New Year’s. I haven’t felt well in 10 months. I almost forget what it feels like to feel normal. But I know this isn’t forever. I am a fighter, and I will not lose this battle.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.