The pain had been brewing for weeks. It was a familiar pain because it was the pain that I had been feeling for the seven years prior. A pain that would often send me to the Emergency Department, only to be told that I had an irritable bowel and I needed to adjust my diet, something that I tried but never gave me relief. After explaining this lack of relief, I would feel the shift in the people who were treating me. They would question the authenticity of the pain and begin to treat me as a narcotics seeker. Their tones ringing with condescension and disbelief.
Finally, I had given up. I noticed that when the pain would come, after a few days of intensity, it would eventually start to subside. I stopped going to the Emergency Department, and I walked away from two different Gastroenterologist with a diagnosis of it’s just IBS, nothing serious. However, on this night, rather than subsiding, the pain woke me from my sleep it was so intense, I couldn’t stand. I crawled to the toilet where my body forced bloody stool out. After cleaning myself, I fell back to the floor. I began to talk myself through the pain “Just breathe, it won’t go away if I don’t relax.”
On my way crawling back to my bed, I noticed my husband now awake sitting on the side of the bed, seeming to be getting dressed. As I got back into the bed, I asked him to lay back down. “I can get through this,” I told him. Without hesitation, he told me to get dressed because he was taking me to the Emergency Department right now. The pain was so unbearable that I could barely dress myself, and in the car, I reclined my seat and curled my body.
When we arrived at the Emergency Department, my husband got a wheelchair and because it was about 4am and empty inside, I was taken straight to triage. I remember the nurse asking what my pain level was, and I remember feeling like it was worse than any number could explain. After getting an IV started, I was given morphine, which did nothing to ease the pain. The doctor then ordered dilaudid, which finally gave me some relief so that I could get the CT scan that was supposed to show what was going on. It was the first time that a CT scan had been offered to me in an emergency room. Once my results came, the Emergency Department physician admitted me to the hospital to be treated by the gastroenterology team. As the medication began to wear off and the pain started to return, my blood pressure dropped very low, a sign for them that my body was going into shock from the pain. They increased my fluid and administered pain medication to be given regularly. I was being prepped for a colonoscopy, the third one in seven years, but this time, it was while I was having symptoms and not months after.
After my colonoscopy, the hospital gastroenterologist met with me and my husband. I remember his words. “You have severe Crohn’s disease. It is pretty bad. Every part of your colon is affected. You have scar tissue and strictures. Why haven’t you gotten checked for this?”
When I told him that I had these symptoms for seven years and not only did I seek emergency care, I saw two Gastroenterologist, and they never checked me for Crohn’s disease. One doctor even told me that the inflammation I had was probably from drinking, even though I didn’t drink more than once a month, if that.
In disbelief, he said “I don’t know how they could miss this, and I don’t know how you dealt with it untreated for so long.” All I could think was it’s because I am a Black woman. I was dismissed as being dramatic, and although there was absolutely no evidence that suggested I was ever a drug abuser. It was easier to write me off as one rather than order a simple CT scan, which would have shown the active inflammation attacking my intestines.
After seven years of suffering from abdominal pain, bloody stool, nausea, vomiting, and extreme fatigue, it had a name. I finally had a diagnosis.
That was May 2nd ten years ago. Since that time, having Crohn’s disease has done it’s part of ravaging my body as well as blessing me with learning how to live through pain, rest, and appreciate the times of calm. It forced me to attend to myself and pay better attention to what I feel in my body. It taught me to be a strong advocate for myself and not to back down or minimize my experience in order to make others comfortable in their biases.
Eight years after my diagnosis, despite some irreparable damage and years of treatments that often left me isolated, I learned how to live with this disease and entered into remission. There is no longer active disease in my body, just remnants left to carry and manage.
This is one of the blessings of my life. So today, ten years later, I give thanks for the journey.
Ifayinka 