IBD | Ostomy
My name is Melissa and I am 32 years old. I was born and raised and currently reside in Philadelphia. I was diagnosed with ulcerative colitis in 1998 at the age of 12.
After six years of trying to control the disease, my doctors and I decided it was time to remove my colon, resulting in an S-pouch with the hope of surgical reversal. I faced the challenge of attending proms and graduation with an ostomy bag, as if being a teenager isn’t awkward enough.
Eight months after that, I had my ostomy closed up, and began accepting my new “normal”. Fresh out of high school, I found it increasingly hard to hold a job.
After falling in love in 2008 and craving a more stable and functioning life, I pursued full disability status in 2010. One incredibly nail-biting year later, i was awarded disability. Shortly thereafter, I married an amazing man named Matt, whom I am lucky to call my best friend.
By that point in my life, I thought I really had this disease all figured out. Sure, I couldn’t work, but I was content and in love. I was also relishing in the added bonus of being off all medicine for the first time in what felt like a lifetime. Life seemed to be on track.
My balloon was pretty much shot out of the sky in 2012, when I started getting abscesses on my bottom. After a few years of surgical biopsies, I was finally diagnosed with fistulizing Crohns disease. This made my whole world spin
For over a decade, I thought I had UC, and now I found out it was Crohn’s disease all along. I saw some success with treatment on the biologic Humira, but after 2017, it stopped working and my doctor switched me to mercaptopurine.
This disease presents new challenges and accompanying diagnoses on a regular basis. Most recently, I was diagnosed with pyoderma gangrenosum (Google it, it’s super fun), which landed me on some pretty strong steroids for the first time since 2004.
Despite being in the trenches of autoimmune disease for almost 20 years, I never fail to see how blessed I really am. I am extremely thankful for my support system at home, most especially the love and strength I draw from my nieces and nephews.
I am also grateful for my Girls with Guts, who give me the chance to commiserate with people who relate to the physical, mental, and emotional challenges that come with this disease.