At the age of five, my life took an unexpected turn with the diagnosis of ulcerative colitis, an autoimmune disease characterized by chronic inflammation of the colon, or large intestine. Ulcerative colitis fluctuates between periods of active symptoms called “flare-ups“ and remission, where symptoms subside. While there are many possible catalysts of ulcerative colitis, my doctors believe that my journey originated after I contracted a bacterial infection called C. difficile. 

My childhood, from the ages of five to fourteen, was a cycle of remission and flare-ups, marked by countless treatments, medications, and annual colonoscopies. During flare-ups, I experienced daily internal pain and side effects such as fevers, severe fatigue, relentless stomach aches, weight loss, and blood loss, often requiring blood transfusions and iron infusions. I relied on intense steroids and anti-inflammatories like Prednisone, Sulfasalazine, Mesalamine, and Imuran/Azathioprine for several years at a time. Though initially effective, my body eventually began to reject these treatments. 

When I was thirteen, I felt a loss of control and strong sense of helplessness after a myriad of medications had failed me. As a last resort to gain control of the inflammation and painful symptoms I was suffering from medication-wise, my doctors and I collectively decided to put me on Humira, a biologic drug. When this medication, too, proved to be ineffective, my medical team arrived at the unfortunate conclusion that I required a colectomy, a surgery to remove my entire colon. 

My hospitalization leading to the colectomy was unexpected and urgent. I was admitted to the hospital after losing a significant amount of blood and my fatigue had reached a tipping point, inhibiting me from performing necessary daily activities. I was immediately hooked up to multiple IVs, pumping iron, steroids, painkillers, and saline simultaneously into my veins. Additionally, in the first 48 hours of hospitalization, I began preparing for a colonoscopy to confirm that I did, in fact, require surgery. Overwhelmed by both physical and emotional pain, I knew this procedure would change everything. 

The emergency colectomy saved my life. The result of this surgery is an ileostomy bag, a temporary pouch on the outside of the body. I dealt with this extreme lifestyle change for about two months, an extraordinarily challenging time for me, particularly as a teenager.  The visible alteration to my body created immense emotional strain and insecurity despite the massive amount of support from those around me. 

After two months of living with an ileostomy bag, I underwent a second surgery called a “takedown to j-pouch” surgery, or ileoanal anastomosis. This surgery entails attaching the ileum to the rectal cuff, creating an internal pouch (called a j-pouch) made out of existing small intestine to replace my colon, and removing the ileostomy. Now, nearly seven years with my j-pouch, the primary adjustment is more frequent bowel movements, as a j-pouch is significantly smaller than a colon. Additionally, j-pouches are not as proficient at absorbing nutrients, leading me to avoid spicy or rough foods like nuts, whole grains, or raw vegetables that are challenging to digest. 

 Even without my colon, I still have ulcerative colitis due to the small bit of rectal cuff left after the colectomy. My new diagnosis post-op is “ulcerative colitis post-colectomy with j-pouch.” Despite the colectomy providing immense relief and significantly reducing inflammation, it is not a cure; my journey with a j-pouch has not been without its complications. I have had pouchitis (inflammation of the j-pouch), a stricture (a narrowing of the intestine), and cuffitis (inflammation of the rectal cuff). The other potential risks of j-pouches, such as obstructions, fistulas, or pouch failure, are always in the back of my mind. 

In recent years, I have managed my condition with various biologic infusions. After an allergic reaction to Stelara, I found stability with Inflectra (a biosimilar to Remicade) that helps manage inflammation in both my j-pouch and my joints, especially since my recent diagnosis of ankylosing spondylitis, or inflammation of the spine. 

While I may always battle symptoms of ulcerative colitis in some capacity, my life completely transformed in the most positive way since my colectomy. No one could have ever predicted the severity of my disease or the necessity of life-saving surgery, however, I firmly believe that everything in my life happens for a reason. My health journey has molded me into a stronger, kinder, and more compassionate person because I understand the isolation of experiencing invisible pain. I am eternally grateful to my medical team for saving my life and never giving up on me, and to my family and friends for their ongoing support and love. 

My life is beautiful chaos, and I wouldn’t have it any other way.