So many people ask me how I knew I had Crohn’s Disease. I didn’t. For at least six to eight years. No one in my family had Crohn’s despite all the literature saying it’s hereditary. I grew up as a very picky eater, so in many ways, I used to think it was my fault. I have since learned a lot about my illness and I really do not think it was directly related to my diet. I didn’t have a poor diet. But picky I was. When I was roughly a Junior or Senior in high school I had my first case of heartburn. Bad enough that I asked my parents for some liquid medication. I also inexplicably gained a good amount of weight and had my first yeast infection. At the time all 3 of those seemed completely unrelated. However, I discovered they were all related twenty years later when a nutritionist told me I had Candida Yeast overgrowth. That overgrowth had been stewing in my body for twenty years! What does yeast do? It gets puffy (weight gain), causes yeast overgrowth (yeast infection), and it causes an imbalance in the gut flora (heartburn). I wish so badly I knew then what I know now because I firmly believe I could have turned this trainwreck around.
So you might wonder how all this came about? In high school, my dermatologist had me on a long-term low-dose antibiotic as a prophylactic for my skin. I had breakouts like any teen, but I certainly didn’t have acne. I took it some days, others I didn’t. We had NO idea of the detrimental effects of antibiotic use at the time. Nor, did we appreciate what a probiotic was. I had never even heard of a probiotic. Again, something that could have really helped me. So, I do believe that the origin of my illness was due to the overuse of antibiotics. Perhaps I have a bad gene in there, but the constant antibiotic use and misuse combined most certainly contributed to the downward spiral of my health. Each month/year forward I got progressively worse with progressively more symptoms and more severe symptoms. By the time I was a Junior in college, my heartburn became ulcer pain and pain I couldn’t ignore. So, I went to my first doctor to discuss my pain. At that point, he put me on ulcer medication and referred me to a Gastroenterologist. They were both very nice doctors, but I finally got in to see them as I was leaving town. It was the summer after my Junior year of college and I was moving to St. Louis for graduate school. So, while these doctors did tests and scopes and all the fun stuff to diagnose me ultimately with an ulcer, I had to start all over just a few months later with new doctors in St. Louis.
While in St. Louis, I saw the best of the best physicians. It happened that many of my doctors were accompanied by medical students, which was the case throughout most of my years before diagnosis. The things those students did were often comical, but I was a student myself, so I gave a lot of grace and understanding. One med student asked me to change into a robe and literally turned his face to the corner of the room so I could have privacy. Bless his heart. He, however, was the only student or doctor to detect that I had a heart murmur. So, his quirkiness was forgiven. I went thru an entire gamut of testing and drugs and pain for the three years I was in St. Louis. I think my mom flew up there more to take care of me post procedures than weekends I was alone. I was getting much worse and most of the doctors chalked it up to a “stressful time of life” for me. Yes, it was stressful. But I knew there was more. I was not an anxious person, nor did I worry about much.
As soon as I was done with my first rotation in graduate school, my second placement was closer to home in Tulsa. So, I, fortunately, was able to move home with my parents for three months while I found new doctors and tried desperately to remain healthy during my last rotation. My heart was headed back to Texas to find a job, but my rotation ultimately ended up in a job and it was only a God thing. I had no idea the challenges ahead of me with my health. I never could have survived living so far from family for the surgeries I was about to endure.
After about two years in my first job, I had to have emergency surgery on my stomach. The challenge for doctors with me was that my colon was and has always been completely healthy. Unlike most people with Crohn’s, my stomach was a mess, including the upper portion of my small intestine. It was from that emergency surgery when I couldn’t even swallow water that enough of my stomach and small intestine was removed that they were finally able to definitively diagnose me with Crohn’s Disease. It was always suspected, but never proven. I officially had a label now. The Scarlet Letter of gastrointestinal disease. Crohn’s Disease. A terrible name for a disease, in my opinion, and, despite working in an acute care setting in the hospital, it was a disease I had never heard of before. And so the learning curve began in December of 1999.