Ulcerative Colitis, J-Pouches and Med School Oh My!
Wow, I can’t believe we’ve made it to the year 2021. That feels like such a futuristic year. Yet here we are. 2021 also means I have been living with ulcerative colitis (UC) for 15 years, almost 2/3rds of my life.
While I don’t remember the exact day of my diagnosis, I remember how quickly my health, or rather, lack thereof, became serious. All within one year (2006) my life completely changed.
Complications and failed treatments
I was diagnosed with UC; tried and failed the available treatments at the time including prednisone, Pentasa, methotrexate, and others; missed months of elementary school from being sick; and finally ended up in the hospital the day after Christmas with toxic megacolon (scary word, I know).
In a matter of 3 days, the doctors and surgeons talked with my parents about the options and what was happening. I didn’t have time to try any other medications. Nothing was helping and I was miserable.
Miserable symptoms of ulcerative colitis
Vomiting, bloody diarrhea, abdominal pain, NG tube, not able to eat. I just wanted it all to stop. Before I knew it, they were wheeling me to the operating room to have my entire colon removed and an ostomy placed as part of the J-pouch 3 step surgery.
That procedure absolutely saved my life but living as a 9-year-old with an ostomy and no colon was no easy feat. Thankfully, the year went well and at the end of it, my surgeons reversed my ostomy, created the J-pouch I now have and hooked me back up so I could poop like a “normal” kid!
Those challenges early in life really shaped my personality, outlook, and goals for myself. After being intimately involved in the medical system at that age, I knew I had to do something in the medical field as a career.
A bowel obstruction and feeling empowered
Fast forward to my senior year of high school – my life with UC and my J-pouch had been going well – then I experienced my first complication of UC post colectomy and J-pouch creation. I passed out during school and was transported to the hospital.
They found out my small intestine had twisted up over time and adhered to the inner wall of my abdomen, creating a small bowel obstruction that needed surgery to remove.
I had a wonderful female surgeon who sat down with me to fully explain what had happened, what the treatment was and answered all the questions I had. That was one of the first times I was actively participating in the management of my ulcerative colitis and felt so empowered by that doctor.
How my experiences with ulcerative colitis shaped my future
I now deal with chronic antibiotic-resistant refractory pouchitis for which I take Entyvio.
My journey with UC also played a large part in where I am academically – currently completing my first year of medical school! I hope to be able to provide care to my patients from a perspective of really understanding what it is like to live with a chronic illness. Thank you for reading my story.
Do you have a diagnosis story to share?