Disability | IBD | Ostomy
It was one of those sacred first warm days of spring after a long, cold, dark winter. On this day in 2015, I made the forty-five-minute trek to the nearest large town to have tacos. Sitting outside, the warm spring breeze melting the still-frozen earth, I was nervous. My dining partner reassured me, “Your surgeon said it was fine. Your doctor said it was fine.” As I waited, the anxiety built, but then right before I panicked, the tacos arrived. I took my first bite, and all apprehension fled. Flavor exploded in my mouth; the tangy, spicy meat hit me first. Then, the explosion of flavor, tomato contrasted with sharp onion, and guacamole colliding with sour cream cooled it all off with a refreshing after taste of lime. I was twenty-four, and for the first time in my life, I was eating Mexican food.
When I was nine, after several years of testing, I, like my Dad, was diagnosed with Crohn’s disease. By 23, my body had done everything in its power to kill me, and after fighting for years, I consented to a proctocolectomy. Or in other words, my anus, rectum, and colon were removed. In their place, I was left with a permanent non-reversible ileostomy, and my life has not been the same since. The first-year post-operative was hard. An infection channeled in my body from my perianal line, where the surgeon had given me my barbie butt, and I struggled to find supplies that worked for me. However, I also had made myself a promise. No matter what, I was going to accept this, and I was going to live.
Eating tacos on that spring day was my first taste of this new life. Like the warm spring waking up the world, sitting outside eating tacos, I woke up, and for the first time in a decade, I felt good. From that moment forward, I adventured. I ate amazing food that I had only read about or seen on television. I attended birthday parties, graduations, and weddings. I started a yoga practice, began to lift weights, became a runner, hiked mountains, and went places that I could never have before. I went to so many baseball games. I spent entire days at the beach, swimming in my bikini. But then, only a few years later, the life I built was threatened when I woke up in the dark hours before dawn with severe pain.
I knew I was in trouble, and by evening I was hospitalized with a bowel obstruction and a very nice all be it slightly out of his element rural ER doc was placing an NG tube. It has been five years since that first obstruction, and with it, I left the only remission I had ever truly been in. Today, in many ways, my worst nightmares have come true. My body is not the same body it once was, and additional surgery resulted in a high-output ileostomy that has been on the good days a challenge to manage. Today, with my multiple self-injectable medicines, various over the counters to combat increasing joint pain, and popping anti-nausea meds like Tic Tacs to counter medicine induced nausea, it can be easy to forget the young woman eating tacos in the spring breeze. Yet, she remains. Underneath the sick and frustrated layers, I remain- the woman who will not accept anything other than a full life.
Accepting this part of the journey, and my body’s current state has been the biggest challenge of my Crohn’s and ostomy journey. Unfortunately, most of the health problems I encounter today are simply the effects of multiple major surgeries, a lifetime of treatment-resistant Crohn’s Disease, and damage my body has sustained. Yet, I still have good days and moments where I can live, and, on those days, I swiftly abandon life responsibilities and usually take to the woods.
On one such day, I chose to hike my first “up hike” since 2018. Three quarters up, with tears in my eyes, after vomiting from the exertion, I sat down and said, “I am done. I can’t do it.” My hiking partner looked at me and said, “ok, we still got a good view. We can sit right here and have lunch.” I looked at him, and I assessed how I felt, “no.” So, with breaks every 20 feet, I hauled my broken body up the mountain. Sitting at the top, eating strawberries looking out over the Green Mountains of my home state, I learned what IBD and an ostomy had given me- an appreciation for moments like this that others who are well, take for granted. In my quest to get more moments like that, I have learned to put my health before all else.
I have applied for disability, and while at first, it felt like giving up, it is my final act of living. I cannot do it all, at 36, I have finally accepted I have limitations. But if I must choose a life of sick, pushing my body to work past its limits, or a good disabled life- I will select a good disabled life. I need time to heal and relearn my body and today I know, life is far too short. After all, the good days are meant for the mountains.