Hi! My name is Julia (friends and family call me Joules), I am 28 years old, live in Munich, Germany with my boyfriend and cat, and I have ulcerative colitis.
My symptoms started back in 2013 with a horrible anal fissure that put me straight into hospital (yep, no sugar coating here from the beginning…). As a 20-year-old college student, who was all about partying at the time, this whole experience (e.g., literally needing my mom to help me go to the toilet) was very traumatic and affected not only my physical but also my mental health greatly thereafter. I got very insecure about going out with friends and became a more and more introverted and private person, especially since I felt I couldn’t tell anyone about my struggles (it seemed too embarrassing at the time).
I suffered from severe diarrhea and/or constipation in the following years, got tested for all sorts of food intolerances and tried various diets, got told I was having an eating disorder, that I should “just eat more”, or that it was “just the stress”, that it would become better after my bachelor’s thesis (and then after my master’s thesis…), got sent into therapy for an anxiety disorder, and was ultimately diagnosed with IBS.
Around Christmas of 2018 I started bleeding quite heavily (having ignored there being mucus for a while before) and was scared that it could be another anal fissure. I reluctantly went to the doctor after the holidays and the inflammation was so severe by then that I pretty much got diagnosed with ulcerative colitis right there on the spot (my calprotectin being at 7,000 at this point). “Finally,” I thought, not knowing what that actually meant, just happy about having a diagnosis that felt real to me. As the inflammation was so severe, we thankfully started with infliximab pretty soon thereafter (summer of 2019), which did help me a lot in the beginning but also came with a whole bunch of side effects. I caught infection after infection and lost my very first “real” job after college due to too many sick days and “being a risk to the company” (as my boss nicely put it…). Being an honors student with high aspirations, I was devastated and my mental health deteriorated. Luckily, I could seamlessly start working as a content marketing manager at my dad’s company where I experience a lot more understanding for my condition.
As infliximab stopped working for me after 1.5 years, we tried Entyvio next (end of 2020). However, my symptoms got worse and worse in the past months, my calprotectin was back at 2,000, I got put on prednisone, and the last colonoscopy showed severe inflammation/ulcers in my rectum. This is pretty much where I’m at right now (summer of 2021), waiting for my loading dose of Stelara in August, hoping for it to work!
As the last months were particularly hard on me, I also started an Instagram account @colitisandmorefun dedicated to my daily ups and downs with ulcerative colitis, which helped me connect with a lot of fellow “spoonies”/chronic illness warriors and finally made me feel less alone with my struggles. 🙂