“I can’t stress enough the importance of advocating for oneself” – Charlotte’s story
When I was 16, I experienced severe abdominal pain that led me to the hospital where tests revealed pancreatitis. This diagnosis was particularly surprising for a healthy and very fit 16-year-old who didn’t consume alcohol.
I vividly recall the doctors discussing gallstones and the possibility of removing my pancreas with my mother, who was understandably alarmed. As I navigated through my teenage years, I battled with persistent pain and severe bloating until 2017 when I returned home from Bali at 21 years old and noticed blood in my stool.
Embarrassingly, I asked my doctor about this, worrying that I might have a parasite due to the blood filling the toilet bowl. Soon after, I found myself being examined for hemorrhoids, not knowing that dropping my pants for medical procedures was about to become a norm in my life. A colonoscopy a week later confirmed that I had severe Crohn’s disease.
I started taking the typical medications prescribed for the disease but as my symptoms worsened over the following years, doctors began to doubt the legitimacy of my physical symptoms since my test results didn’t align. The bleeding became uncontrollable, prompting visits to three new gastroenterologists, and a new GP, who all failed to provide a conclusive diagnosis. Instead, they attributed my issues to IBS and suggesting dietary changes. I was made to feel like I was going crazy as I was taking 10 laxatives per day with Movicol and suppositories with no improvement. The pain was so severe that I could barely leave the house. I would go weeks without using the bathroom.
Fortunately, through relentless self-advocacy and the search for answers about my condition, I finally connected with a gastroenterologist who truly listened to my concerns. She identified 13cm of inflammation in my colon and diagnosed me with active colitis. My gastroenterologist advocated for me and – since beginning my treatment with Infliximab infusions – I am grateful to be in remission.
I have regained my quality of life.
I can’t stress enough the importance of advocating for oneself when it comes to your health, as only you truly understand how you feel.