Before I was diagnosed with ulcerative colitis, I can’t remember ever having a bowel movement. That’s how unmemorable my digestive system was. I don’t remember having diarrhea. I don’t remember being concerned about how what I ate would affect my digestion. I don’t remember ever having discomfort or even throwing up.
And So It Begins…
When I was 16, however, and starting my junior year in high school, that all changed. The blood in my stool came first. It may have been going on for some time before I even noticed it (again, I don’t ever remember thinking about stool before). When I did notice it, I had no idea what it meant. It went on for a few days before one morning I told my dad what was going on. He called out of work that morning and took me to the prompt care at the local hospital.
After describing my symptoms, I was escorted to a treatment room. So, I wasn’t in the large ward where beds are only separated by curtains. I was in a room with a door. I only remember seeing one physician that morning. I believe he palpated my abdomen (pushed on it), and I’m sure they took a history and some blood and urine, and that was about it.
No One Ever Suspects A Misdiagnosis…At First
My official diagnosis? “Intestinal flu.” To this day I have no idea what that means. Because intestinal flu is not a thing.
I was sent home with some medication, given instructions to rest until I felt better, and told to see a pediatrician in a few weeks for a follow-up. I believe I was also to bring in a stool sample, but I don’t know how long after that initial diagnosis a stool culture was done. I remember laying around on the couch a lot. I remember my boyfriend of the time bringing me juice and puzzles to do, but I don’t remember feeling any better. As a matter of fact, I felt worse as the days went on. I know I was losing weight, but as weight was not an issue for me at that time, I didn’t think about it a lot.
When I saw the pediatrician, she put me through the paces of a history and palpation again, and referred us to a gastroenterologist. Clearly, the pediatrician had a strong idea of what was going on, and she knew where she needed to send me. It was not a pediatric gastroenterologist — I don’t even know if there were any practicing in the area at that time (it was 1989).
Where Did We Go Wrong?
I know now how ridiculous that first exam at the clinic was, and how off-base the diagnosis. I fit a profile, which the first doctor completely failed to recognize. Here’s what went wrong:
- He palpated my abdomen (which was good). He would have been looking for anything amiss, like a spot of hardness, or a particularly tender area. Any unusual finding during this very simple but very effective exam could have found something like an obstruction or an abscess. But I didn’t have those things, the only symptom I had was bloody stool. He did not do a digital rectal exam, and he should have. His glove would have come away with bright red blood, but he would not have found any hemorrhoids. This would mean that the blood was coming from somewhere north of my anus, but south of the upper digestive tract. In other words — my colon.
- He took a history, so he knew that my main concern was bloody stool. Blood in the stool is never normal. Never. Full stop. It’s not normal once in a while, or after you eat spicy food. Blood in the stool is never, never normal. That symptom should have spurred him to look harder for the cause of the bleeding.
- He missed the obvious. Have you ever heard the expression “When you hear hoofbeats, think of a horse, not a zebra”? I was a horse and he treated me like a zebra. Ulcerative colitis and Crohn’s disease are not uncommon conditions. They are not rare at all. What’s more, the diagnosis of these diseases (collectively known as inflammatory bowel disease, or IBD), tends to spike between the ages 15 and 25. I was 16, I was white, I lived in Michigan, I had blood in my stool — IBD should have been on the short list of differential diagnoses.
- I probably should have been admitted to the hospital or at the very least, undergone more tests. The physical exam didn’t turn anything up, but there was clearly something going on. What if I had developed toxic megacolon, or if I had an intestinal perforation? My life might have been in jeopardy. Did he do enough tests to rule out these serious problems? Obviously he thought so, but in hindsight, I feel as though more should have been done.
I eventually did get to physicians who diagnosed and treated me properly, but this initial misdiagnosis really set us back. If the ulcerative colitis had been discovered sooner, I might not have gone on to become as ill as I consequently did.
Forgive? Eh, Maybe I’ll Get To That Someday
Perhaps I’m too hard on this doctor. Maybe he was working too hard, had too little support, and had never seen a case of IBD before. His days were probably filled with influenza and strep throat. Sprains, strains, concussions and broken bones. I come along and don’t fit into these buckets. So, what to do with me? Pass me off to a pediatrician.
But then again — perhaps he got his medical degree from a Cracker Jack box.