I was a Junior or Senior in high school when I remember feeling my tummy “burn” for the first time. It was to the extent that I asked my parents for heartburn medication. I was an avid tennis player, playing up to 7 days a week multiple times a day and I gained a significant amount of weight in that time. In addition to that, I had my first yeast infection. It would be 20 years before I understood the significance of those symptoms, but they meant something. And something big. Had I known then what I know now, oh how I could have stopped the momentum of my lifelong struggle. It was a struggle including too many late-night drives to the ER to count, hospital stays, blood transfusions, iron infusions, many surgeries, incredible amounts of pain, guilt, time away from my family, missed school events, missed ball games, so many things I missed that a Mom doesn’t want to miss. And, I would be a rich girl if I was paid per hour for the time I spent in doctor’s waiting rooms.
All of that was brutal, yes. But it didn’t just hurt me. It hurt my family, my husband, my parents, my in-laws, and my kids. My illness affected nearly everyone that was in my world. My friends who prayed for me, cooked for my family, took care of my dogs and house in our absence and swooped in to care for my 3 young boys. My incredible neighbors just always seemed to know what to do without being asked. There are no words to express our gratitude to the people in our lives that just loved us and ultimately carried us through this difficult time.
By the time I was a Junior in college, I actually went to a GI doctor for the first time. I saw many doctors between undergrad, graduate school, and my first job, all in 3 different cities. Each doctor wanted to perform their own tests and exams. Every doctor was stumped. I grew tired of hearing how unusual my issues were, but that became the norm for the next 20 years of going to specialist after specialist in city after city. My ultimate diagnosis was Crohn’s Disease. But the complication arose in that my colon was completely healthy. While most people with Crohn’s have chronic diarrhea and weight loss, I had chronic vomiting and bloating. Perhaps I will hit on those symptoms later. Even after I saw the top doctors while in graduate school at Washington University/ Barnes Hospital in St. Louis, trekked to Mayo Clinic in Rochester, MN , saw the namesake for Ertan Digestive Disease Center at the University of Texas in Houston, and the multiple amazing doctors whose names may not be in lights but were unbelievably loving and supportive of this very sick young girl. Even after I saw all of them, they really had no true solution for me. I did all the meds, meds that were created to release in the colon. I never asked questions. Those didn’t work. I took brand new systemic drugs that worked once or twice, but inflammation turns to scar tissue and no meds remove scar tissue lining your stomach and intestines. I cried buckets as I signed my life away to all the 500 side effects, including death and a horrible list of adverse reactions to taking the “latest and greatest” medicine for Crohn’s. At that point, my pain was so intense and so chronic, my sanity was waning, and it was all I knew to do to relieve my pain. I signed it, while dosed on large amounts of morphine. That medication provided gradual relief over the next few months, and ultimately, I had to be taken off of it because I was hospitalized with pneumonia twice. That medication suppressed my immune system in an effort to suppress the Crohn’s. But so much so, my body had no fight. I had nothing. My doctors had nothing. If there was a pit, I was laying at the bottom of it and still managing to raise 3 precious little boys that cared for me deeply.
It was a normal day to pull over on the side of the road, vomit, and get back in the car with 3 boys in car seats and move along. I can just hear my oldest, “Mom, did you frow up?” I tried my hardest to hide my hurt, but very little slipped past him. He found me on the floor of the bathroom in the fetal position just trying to breathe thru severe pain. He wanted to help. From what they could understand, they all wanted to help. To my delight, they gave me foot rubs, brushed my hair, and waited on me hand and foot. I received pictures and strange play dough pieces. Those things made me feel so good and yet so bad at the same time. I wished so desperately, my boys had a healthy mom.