Friend

I am a 28-year-old Crohn’s Patient that has been battling this disease for the past seven years. My journey with this chronic inflammatory bowel condition has been a rollercoaster of physical pain, emotional turmoil, and relentless determination.

My symptoms first appeared during my final semester in college. What began as occasional stomach discomfort quickly escalated into severe abdominal pain, bloody diarrhea, and rapid weight loss. I dropped from 135lbs to a concerning 106lbs in just two months. Initially, the universities health center dismissed my symptoms as stress-related IBS or a possible eating disorder. It wasn’t until I had to leave one of my classes during an exam because I was writhing in pain, that I was referred to a gastroenterologist. After three agonizing months of various tests, including blood work, stool samples, a colonoscopy, and an MRI, I was finally diagnosed with Crohn’s disease.

Unfortunately, since that diagnoses my Crohn’s disease has permeated every aspect of my life.

I often struggle with debilitating fatigue. There are days when I can barely keep my eyes open, even after sleeping for 10 hours. I’ve had to take frequent sick days, especially during flare-ups, which has affected my job and made me feel guilty about letting my coworkers down.

I have also become hesitant to make plans with friends, often canceling at the last minute due to sudden symptoms or the fear of needing to make an urgent trip to the bathroom. I have missed important events like a good friend’s wedding and family birthday parties due to unexpected trips to the hospital. Dating has become a source of anxiety, where I worry about when to disclose my condition to potential partners and I can’t help but fear rejection if I do.

My eating habits have also changed because of the need to eliminate many foods I once loved, including raw vegetables, many fruits, dairy, and all spicy dishes. I must meticulously plan my meals and bring my own food to family gatherings, which always feels awkward. The holidays are particularly challenging, as big family meals often center around foods I can no longer enjoy.

My treatment journey has been complex and frustrating to say the least.

I initially started with oral mesalamine and prednisone, but the side effects of prednisone (mood swings, insomnia, and facial swelling) were difficult to manage. I was on Methotrexate and that helped for a while but lost effectiveness after just a year. Currently I am on Humira, administered via bi-weekly injections. While it’s helping, I still experience breakthrough symptoms and worry about potential long-term side effects. I have also experimented with alternative therapies like acupuncture and cannabis oil, with mixed results.

The psychological impact of my Crohn’s disease has left me with anxiety. I do experience panic attacks before important work meetings fearing a sudden onset of symptoms. I also have to plan my driving routes to work and family so I always know where the nearest bathroom is. The unpredictability of my Crohn’s has led to anxiety that affects my daily life.

Despite my struggles, I am trying hard to maintain hope. I am grateful for the Crohn’s and Colitis Foundation and the progress that has been made.

My journey is ongoing. As I continue to navigate life with Crohn’s disease, I take it one day at a time and hold onto hope for advancements in treatment that could dramatically improve my quality of life.

Marathon #85 – Recap