Hello! My name is Madison and I was diagnosed with Crohn’s Disease in 2001 as a first grader. However, I think it is important to note that my diagnosis was not a simple one - though really, I am not sure they ever are.
Over the years I have gotten accustomed to the phrase “I was diagnosed with Crohn’s Disease.” because that has become accepted as the general consensus by my doctors over the years. However, a more realistic statement would be, “I was diagnosed with an Irritable Bowel Disease”. When I was younger, despite countless tests and various medical procedures, it has always been a bit of a toss up between Crohn’s Disease and Ulcerative Colitis. I often forget about this since it has largely been accepted that I have Crohn’s Disease, but recently, I was reminded of this discrepancy and told by my surgeon that it actually may actually be Crohn’s Colitis - though there is no way for us to confirm this one way or another. Regardless, I have struggled to get a handle on this disease for the past 16 years and still have yet to find a medication that works for me. A few weeks ago, I tried to go through my medical history and assign a number to the ridiculous amount of medications I have tried, but honestly, I lost patience with this daunting task after listing about 20 different medications without even making a dent. What’s important though is this: if it can be used to treat an IBD, then trust me, I’ve tried it.
Now, as a 22 year old college student, having this illness is second nature to me. I grew up dealing with the difficulties that come along with an IBD and after more than a decade, have more or less learned how to deal with them. However, over the past few months I have been giving a lot of thought to how simply dealing with these issues is stopping me from living the life I want. I want to be able to get in my car and drive to school without feeling the rush of panic that comes along with not knowing if I’ll make it to the nearest restroom. I want to know what it’s like to go somewhere without having to meticulously plan out every last detail and ensure that I will have access to the facilities. I want to reclaim the freedom that this illness took from me as a young child. For this reason, I, along with the help and support from both my GI doctor and my family, have decided to embark on a new part of this journey. Currently, I am in the midst of an array of pre-op appointments and procedures to prepare for what is to come at the end of this year: a total proctocolectomy with permanent end ileostomy.
Looking back, it’s hard not to be sad for the younger version of myself who had to go through all of the testing, trial and errors, and pain that unfortunetly comes along with such a diagnosis. I tear up when I look at pictures of myself from the times I was on prednisone and had the signature “moon face”. When I think of the times spent with my friends in middle school and high school, rather than remembering the fun I’m sure we all had, I recall the anxiety - which I desperately tried to repress at the time - of not being near a restroom constantly. Even looking back on some of my college years, which I’ve been told are supposed to be some of the best years of my life, I can’t help but lament for the girl who just wanted to go on a normal date or tailgate with her friends without having to worry about hiding the stomach pain and urgency to use the restroom in an effort to feel slightly more normal, if only for a few hours. However, despite all of this, I am also able to look back and see some pretty amazing positives come out of these circumstances. Living with an IBD has made me a much stronger person than I ever thought possible. Beyond simply being able to get blood drawn without even blinking an eye, it has forced me to appreciate even the smallest of things. Days that I am able to go on a bike ride and not feel that tinge of fear just as I reach the furthest point from my house are some of the best days - and though they are rare, they mean the world to me.
However, I think the most powerful thing that this disease has taught me is that it is okay to be different. I spent a large portion of my life doing everything I could just to keep up the appearance that I was “normal”. But now, as I am rapidly approaching my surgery date, I am finding that feeling better and gaining back control of my life is exponentially more important than maintaining a perfectly healthy appearance. For one, who decides what a “healthy appearance” is anyways? While yes, for some, this may be a perfectly sculpted body and flawless skin, for other - myself included - it is the proud display of an ostomy bag that afforded us the freedom that was stripped away before we could even begin to comprehend what was happening in the first place. For the past few years, I had started to feel as though there was no point in trying new medications because I had began to accept that fact that I would never get my life back. However, with a new outlook on my condition, I am proud of how far I have come and genuinely look forward to conquering my symptoms in the new year.