It’s hard to wrap my head around the fact that it’s been over two years since my emergency proctocolectomy. It seems like it was yesterday, and a lifetime ago all at the same time. A lot can change in two years. Before September 3, 2014 I didn’t really know who I was.
I was struggling with this identity of being a fun, energetic, happy young adult trapped in a sick girl’s body that I didn’t know, recognize, or like. I was “me” but I wasn’t. Since the diagnosis of Crohn’s disease at age 18, I've come to terms with the fact that I will always be a girl with a chronic illness, but I've learned to cope with it and accept it. What I needed to learn (the hard way) was that there's really no right way to cope with a disease such as Crohn’s because it is constantly changing. No two days are ever the same and I never know what tomorrow holds. Even on good days, it's there — this becomes the sad reality of life. I have always embraced the challenge of accepting my body and all the different challenges that comes with it.
I had never heard the words Crohn’s before the phone call from my doctor in 2008. From that moment on I promised myself that I would make it my life’s mission to inform as many people as I could about this disease that stole so much from me. Crohn’s has taken more from me than I ever imagined it would, but it has also given me more in return than I could have ever asked for. It taught me compassion, it taught me empathy, it taught me that it is okay to ask for help, and most importantly, it taught me about the strength deep inside me I never knew existed. Sometimes I sit and I wonder who I would be and what choices I would have made if I never had to deal with this disease, and to be honest with you, I don’t know that I like the answer. It’s easy to look at someone in my situation and feel pity for me (its most people’s first reaction) but once you get to know me, you'll know that this couldn’t be further from the truth. I don’t feel sorry for myself because I know who I am, and for that I can thank Crohn’s.
In August, 2014 I was preparing myself for what would be the biggest game changer in my disease progression so far. When I was told that I would need an ileostomy for the rest of my life (at age 24), it felt to me at first like there was a death in the family. A part of me died that day. My whole life as I knew it was turned upside down and for once I had no control over what was coming. I was entering uncharted territory and while I had a wonderful support group around me, I felt absolutely alone because unless you have an ostomy, you don’t get it.
Two years ago, I was experiencing a lot of “lasts” and some were stranger than others. You all may laugh, but farting... I will never fart again. I can no longer take long, hot showers. I can’t eat mushrooms, or pineapple, or brussel sprouts. I would never have a soft, smooth stomach that my husband could rest his head on. These may all seem like small things to you, but to me they were life-changing, and still are. What I didn’t realize at the time was, two years later, I wouldn’t remember this whole situation as a “death” but rather as the start of a new life.
I will always consider September 3rd as a “birthday” of sorts to my ostomy. Here's to another year of balancing acts!
It’s hard to believe we have made it through two years together. There have been (countless) times where I wanted to give up, where I thought we would never be able to make this work. When we first met, I can’t even describe to you the resentment I felt towards you. I never wanted you. I told numerous doctors to let me die before giving me an ostomy bag. I was a kid when I met you, and now, because of you, I have grown up. I will never be able to put into words what you have done for me and my quality of life. I simply didn’t have a quality of life before you came along, and together we have accomplished more than I ever thought possible. It’s only been two years, but I find myself not being able to remember what life used to be like without you. This is probably because some of my best memories have you in them, and it isn’t hard to understand why. You saved my life on so many levels. Physically and emotionally I was ready to give up two years ago, and you were able to give me the gift of a lifetime; you made me healthy. Being healthy is something that I think a lot of people take for granted. Until you or someone you love is sick, you’ll never understand how lucky you are to be able to do day-to-day activities. Every single thing I do in my life I know I have you to thank for, because I know that two years ago without you it wouldn’t have been possible. Sometimes I get emotional thinking about how people I meet in my life now have NO idea what it took to get to where we are today. They will never be able to see the struggle, pain, and determination it took to get to this point in my life and that is because I am not sick anymore, and I owe that all to you. Two years may seem like a long time, but in the bigger picture of things, we have a long time left together. I may not like you all the time, some days I will cry and hate you, but I promise to always remember a time when I didn’t have you, and I will associate those times with pain that I no longer feel because of you. I promise you to continue to do my part to break the stigma and raise awareness about you, and most importantly I promise to live my life to the fullest, never take a breath for granted, and be the best me I can be. Happy birthday ostomy!
This post originally appeared September 3, 2016 on Balancing Crohn's In The City.