CW: frank, fairly casual discussion of trauma beyond the cut; reflecting on my experiences with Crohn's Disease and surgeries.
Very very weird to think about how I've had Crohn's Disease for nearly a decade. Come September, it will be 9 years. Looking back, it's hard not to wonder how my life may have been different had my doctors listened, my body cooperated more, and treatments were more successful earlier on. I can't help but wonder who I could have been or what could have come of me had I not had a disease trying to eat me whole all the time. Now, I'm in remission, but those first 5 years still haunt me to this day.
At the end of September, it'll be 4 years since I had my first ostomy placed. That surgery was a blessing and a curse all wrapped up in one. It led to so many complications down the line, but it also gave me my life back. I can eat so much more now without pain. I can sleep through the night. I can go on long road trips. I can sit on the inside of booths at restaurants (that one almost made me cry when I realized that not long after that initial surgery). Finding every bathroom nearby is no longer a top priority for me.
I still have a lot of trauma to contend with and process, and something like Crohn's Disease means that the bulk of it - needles, surgical instruments, how invasive scopes feel, and more I can't think of right now - does not go away. No matter what I do, they'll come back to me. That tension and anxiety is hard to let go of.
I'm okay now, but what if I'm not soon? What if I'm in so much pain that nothing works again? What if the hiatal hernia gets worse and I can't stop it? What if, what if, what if... So much of that.
I'm still trying to navigate this new normal of constant warning symbols popping up from trauma and anxiety, even when they don't need to, even after all this time.
How will year 15 feel, when I've surpassed the barrier of more years with this disease than without? Will I be wounded by that truth, or will I readily accept it without a second thought? How will my thinking and processing have changed in 6 years?
One thing I can say with confidence is that community is everything. I wouldn't have survived much of my journey through 3 surgeries and all the complications in between without the support of the IBD community I joined right when I learned I would need surgery. They have been a light in so many ways. I can see people older than me living their lives - they have bona fide careers, pets, children, and futures so full of light. I didn't know what was possible before. I couldn't see a future worth the "through". Now, I am living it. I am seeing it for myself. It's harrowing, but it's mine. I am alive to see it. What a gift.
