“I hope to help inspire other teens with IBD and encourage them to share their own”- Maythem’s story
Even though the people around me kept telling me I was faking, I knew something deep inside was wrong. I remember my childhood slightly; at age 5, I wanted to be a soccer player; at age 8, I wanted to be an artist; and at age 11, I wanted to spend the rest of my years rotting in a hospital bed hooked up to machines that made noises every minute. Oh wait, that’s not supposed to be there, but that’s what happened.
My journey started in 2017 when I was diagnosed with ulcerative colitis, which is an inflammatory bowel disease that causes inflammation and ulcers in the digestive tract. I had just entered grade 5, and I had felt lost and distant from myself. I was confused. I remember multiple occasions where I had trips to the hospital for things like infusions and checkups, and each time my colon would flare. So, as you can imagine, I lost a lot of my youth and my primary school years (all those days off, and I still can’t manage my condition to a hundred percent).
I was also diagnosed with supraventricular tachycardia at 15, which is a type of abnormal heart rhythm that results in fast heartbeats. The heart normally beats at 60-100 beats per minute. With SVT, the heart beats more than 100 to even 200 times a minute while resting. But that’s a story for another day.
My medical journey started in May of 2017, when I began to experience blood-stained diarrhea, intense abdominal pain, and cramps. I was also experiencing other symptoms such as weight loss, fatigue, loss of appetite, and vomiting. After waiting for the results of a stool test, I was finally admitted to the hospital on the 27th. Since then, I’ve had countless tests done, including ultrasounds, colonoscopies, and blood work. And I have also taken many different drugs, all the way from pills like prednisolone, mercaptopurine, and docusate to infusions like ustekinumab, infliximab, and Humira. Now that my disease has calmed down, I’ve settled on daily doses of mesalazine and upadacitinib.
I found myself in a dark and scary place after I was discharged from the hospital and felt as if no one understood what it felt like to be tired all the time. It was difficult to talk about displeasing symptoms with friends and family at the time, especially as a teen freshly entering high school. I struggled with learning how to cope with this rare, incurable diagnosis, and it was hard to accept that my life would be changed forever.
Now a few years have passed, and I live a mostly happy life, with the help of supportive family members and some close friends. By sharing my story today, I hope to help inspire other teens with IBD and encourage them to share their own.
But if I do feel upset for whatever reason, this quote from the Instagram page @livingwithulcerativecolitis helps me out. “There is always light at the end of the tunnel,” meaning that “living life with an illness is and will always be hard; it can make you feel hopeless and feel as if there is no way out. Just know that that is not true.”