How I Was Diagnosed With Crohn’s Disease

Growing up Latina, illness wasn’t something we talked about. Any kind of symptoms someone had often got dismissed as looking for attention, being dramatic, or just being caused by stress. When you hear this repeatedly you learn to ignore the warning signs your body is giving you. Even if you do know that something is wrong you don’t know what it is, how to ask for help, or even that you can.

Once you finally seek medical attention it can take weeks or even months to get an actual diagnosis, not to mention all the tests and appointments that go with it. Personally, it took me 6 months before I was finally diagnosed with Crohn’s disease.

For the first few months, my symptoms were mild, and I was without insurance. I tried eating better and exercising more, but that only made things worse. How was I supposed to know that I should’ve been resting and eating low-fiber instead? When I was finally able to see a doctor after 4 months, she told me that based on my bloodwork I had anemia and should see a specialist instead. That was another month of waiting. When the gastroenterologist saw me she told me to schedule a colonoscopy. Yet another month.

I didn’t make it to the colonoscopy appointment. I kept getting worse and worse each day. I got to the point where I could barely walk because my joints hurt so bad and I couldn’t eat for days due to nausea and a lack of appetite. I was losing blood every day and I had a fever that left me feeling freezing no matter what I did. Suddenly my feet were swollen like balloons and I had to go to the emergency room. After hours of waiting and a couple of CT scans, at 5 am a doctor wearing a devil costume came in and told me I had severe Crohn’s disease. Best Halloween ever, right?

That was my first 5-day hospitalization. My mom, being a mom, immediately dropped everything, packed her bags, and drove 5 hours to come to stay the whole week with me while I was in the hospital. Up until that point, I hadn’t told my mom everything that was wrong with me. I had mentioned to her that I had anemia and not much appetite, but that was about it. She was working 3 jobs and taking a certification course, and I didn’t want to add to her stress and make her worry about me when I thought it would be cured once I got a diagnosis. That was clearly not the case.

Back in 2016, nobody in my family had ever even heard of Crohn’s disease. We didn’t know what it would mean for me and we didn’t understand the severity or permanence of it. It took me months to accept that it would always be a part of me, and it took some of my family members much longer. A couple of years later and here I am, still with severe Crohn’s, now with an ileostomy, and living a completely different life than I expected.