The Struggle of Getting an Accurate Diagnosis

I’ve had stomach issues my entire life. I don’t remember a time when I didn’t have horrible cramping and felt like my bowels were going to explode after a single bite of food. I have always been extremely skinny, which is pretty unnatural in America. It wasn’t unusual for people to encourage me to eat and gain weight by mocking my appearance, wondering where my curves were. I was frequently ridiculed by family as they assumed I had an eating disorder. Nearly every time I ate, I would have to run to the bathroom after just a few bites and would end up just throwing the rest of my food away. If it made me that sick, I couldn’t finish. The girl with her bones protruding doing this regularly was very appalling to those in my circle growing up. They found my chronic pain hard to believe. Those were just my initial hurdles.

CLEAR signs of Crohn’s

Things became significantly worse my junior year of high school. I was hospitalized nearly every 6 months for extreme pain as well as persistent vomiting and diarrhea. I had these “spells” where I would sweat, my heart would race, my ears would ring to the point I couldn’t hear, and I would get tunnel vision until it all went dark. Doctors didn’t seem too concerned and blamed it on anxiety and depression. I went through at least a dozen different medications to treat this miracle diagnosis (sarcasm intended). This continued on throughout college.

I went to the ER for what I assumed was a bad stomach flu my senior year. I was vomiting blood, severely dehydrated, and couldn’t stand without things going dark. One of my roommates took me to the local, small town hospital where they gave me fluids and anti-nausea medicine then quickly discharged me while I was STILL vomiting blood. I went to another hospital the next day and they informed me I had pancreatitis. They scolded me for waiting so long to get treatment because I could have died. Throughout college, I had pancreatitis twice, my gallbladder levels were off the charts, and my spleen was severely enlarged for years. No one could tell me why my digestive system was shutting down one organ at a time. A gastroenterologist finally ordered a colonoscopy right before my 21st birthday. There were CLEAR signs of Crohn’s, but he did not diagnose me. He told me the prep must have irritated my intestines causing moderate inflammation and redness. He gave me a probiotic that I had to sign a waiver for, in case it killed me and closed my case.

Fast forward through 6 more years of suffering

6 more years of suffering with horrible symptoms and thinking it’s all psychosomatic and I’m doing this to myself. At the age of 27, I moved into a new apartment and soon noticed all of my belongings were slowly being covered in mold due to a faulty HVAC system. A month after I moved in, I was convinced an organ was dying. I couldn’t sleep, I cried, screamed, and nearly vomited every time I went to the bathroom because the pain was so intense. My primary doctor treated me for an ulcer based on my verbalisation of symptoms and when that didn’t touch it, I knew I had to hunt down a new GI.

He immediately knew it was Crohn’s, but did the two for one scope to be sure. Both he and I were (are*) infuriated that my first gastroenterologist did not recognize the symptoms as Crohn’s. If he had diagnosed me 6 years ago after a lifetime of serious problems, it wouldn’t have snowballed. Crohn’s was in remission after 5 months of Stelara and 90 days of Budesonide. I am still in pain every day and I’m still looking for more solutions, but I am so thankful I am no longer surrounded by people who doubt my symptoms and make me think that if I were only more positive in my thinking, I would feel fine.