Hailee’s IBD Story
Hi there, my name is Hailee, I’m 24 years old, from Colorado, USA and this is my IBD story.
My senior year of high school started off on the wrong foot in 2015. I was constantly sick; feeling nauseous, fatigued, losing weight and blood in my stool. I had a colonoscopy done and it was immediately determined I had Crohn’s disease in my small intestine and rectum. At the time, I didn’t really take this diagnosis very seriously at the time. I was prescribed Budesonide and put on Remicade infusions and continued to live my life. Fast forward to starting college, I entered one of my worst flares, which caused me to take a break from school and work.
In 2018, I had a surgery completed to resect stricturing parts of my small intestine. There were some complications a few months after the surgery, which led to me making friends with an NG tube for a while in the hospital. From there on I’ve been on just about every Crohn’s medicine there is and my health was continuing to decline. Fast forward to 2022, I had been hospitalized multiple times due to Crohn’s and C-Diff, stuck on Prednisone for over a year, and fighting my GI about next steps to heal. My GI was perfectly content with continuing my failing treatment plan of Prednisone and non-working Entyvio infusions every 4 weeks. In fact, my GI had said I’ve been in a flare for so long that some of my symptoms could be “psycho-symptomatic”. I felt hopeless and at my rock bottom. I couldn’t work, go to school, sleep, eat, or even leave my house for that matter. I didn’t feel human anymore.
Hitting my breaking point, I flew out to meet with the GI team at the Mayo Clinic in Rochester, Minnesota. It was determined through a colonoscopy and MRI’s that I was severely sick. I had severe inflammation and three different fistulas. My new GI told me I would have gotten sepsis within 6-12 months if I would have continued my old treatment plan. We decided the best course of action would be to give me a temporary ileostomy bag, switch meds, and finally wean off Prednisone.
Thus, Stevie the Stoma was born! I think I’m proof that there is light at the end of the tunnel. It took me a long time to accept that I wouldn’t be “normal” ever again. Instead of closing my eyes to the truth, I opened them and realized I also wouldn’t be the gal I am today if it wasn’t for Crohn’s. This illness has taught me empathy, bravery, self-love and so much more! It’s helped me find my voice and I’ve learned how to get up every time life pushes me down. I’m not ashamed of my disease and I’m finding out small victories go a long way. I am still learning so much through this journey, but I am so grateful for this new life that Stevie has given me!
Hopefully my story can give you a little encouragement throughout your own IBD journey and remember to always listen to your gut (even if it’s not always working right!)
Hailee
IG: @stevie.the.stoma
