Unbearable gastrointestinal distress, excruciating stomach pain, uncontrollable bowel movements, and practically living on the toilet. All these things are commonly associated with Crohn’s Disease and Ulcerative Colitis, but as someone living with Indeterminate Crohn’s/ Colitis, this disease is so much more.
I was diagnosed with Indeterminate Crohn’s/ Colitis 12 years ago as a 14-year-old child. I understood that I had Indeterminate Crohn’s/ Colitis, but at the time I didn’t know what that meant. My life was consumed with bloody diarrhea, nausea, fatigue, weight loss, and excruciating stomach pain. No matter how badly I wanted to spend time with friends, go to school, or live the normal life of a teenager, I couldn’t find the strength to peel my body out of bed.
My diagnosis meant that I exhibited symptoms characteristic of both diseases, making medicating my condition very difficult. I went through the ringer of prednisone, causing my body to endure severe side effects of acne, weight gain, and a swollen face (commonly known as moon face.) My body quickly changed, and soon enough I could no longer recognize the person I saw in my reflection. It was heartbreaking and still hard to think about.
I dove into harsh medications like Remicade and Methotrexate, which are sometimes used to treat Cancer. I tried everything from infusions, oral medications, and even EpiPen’s, until 10 years of this disease left my colon in a precancerous state. My only option was to live with a permanent ileostomy bag, at the young age of 24.
Living with Crohn’s and Colitis does not just take a toll on you physically, but also mentally. It’s a mental roller coaster where you are never sure whether you will come out on top or plummet to the bottom. Sometimes, it’s difficult to remain positive, and that is okay. But, its important to always stay hopeful and continue to fight. The best advice I can give anyone fighting Crohn’s or Colitis is to find support. Whether your support system is made up of family, friends, or an online community, having others to confide in and share your highs and lows is extremely important for mental health. Being able to connect with others and form meaningful friendships has not only given me the strength to share my story, but also the strength to live with a positive outlook.
Always know that you are not alone – there are a million other people out there who have dealt or are dealing with the same issues you may be going through. Connect with them, confide in them, and work towards healing with them.
Article by Eleanor Meghan Cary Brown