“Remember, you are not alone, and you are doing amazing” – Julia’s story
My name is Julia, and recently I turned 21. When I was 16 in 2021, I was diagnosed with Crohn’s disease. I had just started year 11, senior years are meant to be the most memorable ones, right?
For me, I spent a lot of time off school in and out of the hospital with flare ups and difficulty being able to function on a daily basis. My gastroenterologist at the time was very busy and rarely had time to focus on what I would be concerned about. For the next two years I was on and off of prednisone to help try and control my flare ups, unfortunately for me, this didn’t work and only made my condition worse. I trialed numerous medications, including Humira, Rinvoq and Remicade which are some of the strongest biological medicines to help Crohn’s, none of these worked. Rinvoq gave me a quality of life for a short period of time, until it stopped working in mid 2024, but around this time I found a new gastroenterologist who is amazing.
After listening to my concerns, we tried the strongest dosage again which did not work, after this I was admitted to hospital for a sigmoidoscopy the day after my 21st birthday. This showed my large intestine was inflamed with ulcers and granulomas, and I was diagnosed with Crohn’s colitis of the large bowel. I tried the EEN (Exclusive Enteral Nutrition) which made my condition worse. A few weeks after trying the EEN, I was back in hospital, and a few days after being admitted I had a semi-emergency surgery for an ileostomy bag, which essentially saved my life. For me, I had to have a second surgery due to fluid in my stomach and having fevers. Which brings us to today; still recovering from the surgery but the path is looking brighter each day that passes.
If I had been told two years ago that I would end up with an ostomy bag, I probably would have cried and not wanted it and would have worried about being “different”. Today, it’s something I’m incredibly grateful for, and for my surgeons and gastroenterologist who listened. There are plenty of support networks out there for those who are struggling and knowing who they are can be a huge help, not just for your physical health but for your mental wellbeing too.
Remember, you are not alone, and you are doing amazing.