In observance of Crohn’s and Colitis Awareness Week (December 1-7), I wanted to share a little bit about my story to help anyone who is unsure how devastating these diseases can be, and to help everyone learn more so they might better understand their impact on a person who lives with this every. single. day.
I have had more than a dozen major surgeries and thousands of medical procedures that require me to be biopsied, explored, cut, stitched, stapled, and pieced back together. This disease has affected every part of my body. I have spent years of my life hospitalized trying to fight this disease. I have lost my large intestine, parts of my small intestine, my rectum, my anus, and a few other parts of my anatomy, forcing me to live with a permanent ileostomy. What is an ostomy you might ask? An ostomy is when part of the intestine is pulled through the abdomen wall allowing waste to empy into an ostomy appliance or bag on the outside of the body.
Although my ostomy saved my life, it also destroyed parts of my self esteem, it caused an enormous amount of anxiety, and oftentimes, depression. As much as I’d rather focus on the positives, one bad day, week, or month can pull you right back into the abyss of some pretty heavy feelings. Thankfully, there are now more good days than bad and without my ostomy, I would not be here as a daughter, a sister, a wife, a mother, a niece, a cousin, an auntie, a crochet teacher, a friend and an advocate.
I remember the days when I wanted to just give up. When I sobbed and hurt; when I begged for Allah to have mercy on me and let me just find relief. I remember the days after surgery when I had to relearn to sit-up, to walk, go to the bathroom in a new way, to take care of all my wounds, to treat all the infections, to fight my way through sepsis, infusions, experimental treatments, failed medications, hearing the good news and the bad, the numerous doctors and labs, the constant feelings of being scared, the bag leaks and the humiliation of being covered in poop in
a public place, and ALL. THAT. PAIN.
This disease has not been kind to me, nor has it been kind to the 5 million people around the world who suffer every day from Crohn’s disease or ulcerative colitis. Every year, I pray and fight and campaign and rally for a cure. Each year passes and although it feels closer, it still feels so far away.
This illness is just part of my story. Even if it has dominated my life for more than ten years, it isn’t all of it. There is so much more to my life than this miserable sickness, and thankfully I am still here to live the best parts of my story.
Every step this crooked, crazy journey has taken me on, landed me right where I am today. I would have never had the opportunity to know this kind of joy or feel this kind of love, if this disease had defeated me.
There are millions of people at the mercy of these illnesses. Although my fight continues, I consider myself lucky. Many are not as lucky as me. I am lucky not because of the treacherous medical path this has taken me on, but lucky because it has brought me here.
Please take a moment to share my story. To spread the word about these life altering diseases. Crohn’s disease and ulcerative colitis are debilitating to many who live with these diseases. This deserves more than a week of awareness. We deserve to find a permanent cure. Please help us find one. I have so much to live for. I want to always be here to watch this little boy grow..