Coping | IBD
After 6 months of excruciating pain, lack of appetite (and let me tell you, this girl LOVES food), and constant worrying about where the nearest bathroom was…. my doctors were stumped. They didn’t know what the root of my problem was and had spent too much time trying to manage my symptoms instead of running more diagnostics. I finally discovered that Crohn’s disease was to blame.
By the time I had been diagnosed with Crohn’s disease, I was only a month out from my wedding in Mexico. I was scared! Not only had I been miserable for months, but I had just received news that my problem wasn’t one that would go away. While I was worried about my long term future, I also wondered if I would even be able to enjoy what was supposed to be the happiest day of my life. My doctors did their best to help me manage my symptoms and I powered through in the meantime. My wedding ended up being a beautiful day that I will remember forever, and NOT just because of Crohn’s disease! The preparation was actually quite comical. One of my bridesmaids was a nurse. She helped portion out and split my pills so that I would have the right dosage of medicine throughout the day without feeling too loopy. My sweet photographer was also kind enough to hold said medicine and distribute it at the exact times we had discussed. Was my day completely without pain or worry? No. However, what I remember is dancing the night away with my husband, friends, and family followed by my own special firework display!
I was up one day, and down the next. At the time, was seeing a doctor whose nurse wouldn’t communicate with me and my visits with him were unproductive. Rather than try other treatment options, we just kept “sticking it out.” It was really frustrating when my symptoms would get so bad that I would end up in the emergency room only to have him tell me something along the lines of “I don’t think you understand what a flare is.” “A flare can’t last that long!” “Are you sure the pain is that bad?” “There’s obviously something else going on.” In June of 2013, I landed myself in the emergency room one more time before being taken seriously.
While in the hospital, I found a new doctor, an extreme go-getter who dramatically changed my treatment plan. There was so much damage to my intestines that I was kept in the hospital for a week and he recommended a bowel resection. Surgery had been my greatest fear! I was extremely emotional over the next few days, but somehow I found a way to make peace with my doctor’s advice. It became clear to me that only so much of my healthcare was in my hands. It was time to hand over the reins and submit to surgery.
By this time, I had started writing to get my feelings out and to hopefully reach others who were in similar situations. I started www.chronically-inspired.com to share the ups and the downs of my journey. I’m not sure if it was the fear I had, the knowledge that I was out of options, or the fact that my husband and I were buying a home in the same month as my surgery… but somehow, I learned to let go and let others take the lead. My surgery date moving closer became less about worry and more about the hope that I would be healthier soon!
Now that I’ve made it through surgery, I’m still learning to accept my scar and the changes my body goes through due to medication side effects. However, I do feel like I have a new lease on life! I know that I can’t control when my body will flare, if I will need surgery again, and how long my current medicines will work. What I can control is my attitude. I’ve chosen to feel inspired, be active, and take action where I can. Now, I use my extra energy and confidence to take on more responsibility within the Junior League of Fort Wayne, help to raise more awareness and truly advocate for Crohn’s & Colitis patients, and try new fitness classes to stay in shape. This year, I have three goals:
Be half-marathon ready by 2015
Support others with inflammatory bowel disease
Volunteer as a CCFA Camp Oasis counselor
I feel so fortunate to have such a supportive team of family and friends to lift me up when I need it the most. My hope is to pay that blessing forward and continue to support and inspire others! My advice to others who struggle with IBD or who are newly diagnosed? Advocate for yourself and speak up with your doctors. If you don’t, no one else will!