My first onset of symptoms is an experience that I will never forget.
It was 1993, and I had just missed another day of school because my “stomach hurt.” My mom and I had just returned home from an appointment with a pediatrician who did not have any answers for my pain.
I was only 8 years old, but I still remember how scared and confused I felt. Even at this young age, I was experiencing nausea, vomiting, gastrointestinal pain, and regularity problems. Somehow, even though it did not feel like my pediatrician believed me, I knew that something just wasn’t right. But I was a kid, and I did what kids do: I adapted to my situation and learned to live with my symptoms.
Over my childhood years, I played sports and was in my school band, but still lacked consistent school attendance. I was a straight-A student, lettered in volleyball and band, became captain of my school’s bowling team, was a member of the National Honor Society, and tried so hard to just manage symptoms that seemed to get worse with every passing year.
I’d have episodes of good followed by episodes of symptoms that I did not understand, but my pediatrician still did not have any answers for me. Somehow, I learned to just live with it all until I couldn’t ignore it any longer.
In 2006, I was a sophomore in college and started to experience symptoms that kept me away from my on-campus college classes, my part-time job, and my social life. Unfortunately, I had gastrointestinal pain on the right side of my abdomen, nausea, vomiting, weight loss, severe regularity problems, and extreme fatigue. No matter what I ate, it didn’t seem to stay in my body for very long. Even though I tried everything I could think of to get answers (medical appointments with primary care doctors, gastroenterologists, and even psychologists as well as diet changes, extra vitamins, digestive supplements, etc.), I still did not have any definitive diagnosis.
Over the next year, I’d return to my gastroenterologist over a dozen times. I had food allergy testing done that proved that I was allergic to dairy, had my gallbladder removed (also known as a cholecystectomy), and started to follow a strict dairy-free diet. In the fall of 2007, I had my fifth total colonoscopy that finally brought a diagnosis.
I had Crohn’s disease.
During that time, my gastroenterologist had seen intestinal inflammation, specifically related to the ileum, which is a small section that connects the small and large intestine. Through a physical exam, intestinal biopsies, and lab work, my gastroenterologist was able to determine what had been the primary cause of my pain and symptoms for the last 14 years.
It was at that time that I also received the diagnoses of ileitis, gastritis, gastroesophageal reflux disease (also known as GERD), and gastroparesis. It was apparent that my entire digestive system was inflamed and seemed to be working overtime.
Almost immediately, I was placed on steroid medications and was given a stack full of papers explaining medical information about these conditions and a multitude of questions rolling around in my brain. I honestly didn’t know or understand how to put it all together.
It was at this point that I started a lifelong journey with managing my symptoms, balancing health-related appointments and treatments, and researching my own conditions as much as I could.
The following years would bring forth one heck of a battle, both within my own body and as an advocate for my own care. Since that time, I’ve experienced consistent medical appointments and testing, repeated diet changes, and a multitude of recommendations from specialists in the field. I’ve experienced steroid medications, TNF blockers, infusion treatments, and natural alternatives through functional medicine.
Even though it feels like I’ve been through a lot, I do try to stay positive as much as I can. I’ve always felt that if you lose your positivity in these type of situations that you are no longer living your life; you’re only surviving, and no one deserves to go through life in that way.
Even though health problems, especially autoimmune disease and chronic illness, can be very difficult to manage, it is always better to stay positive. It’s not about what you can’t do but what you CAN DO that truly matters.
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