The Looming Fear of the Next Flare
When's it going to happen next? Oh, you know what I'm talking about. That moment when your inflammatory bowel disease randomly, haphazardly, decides to interrupt your day and your life. I was recently at an IBD Patient Symposium in Chicago. The doctors speaking talked about surgery and the fact that most patients would need an additional surgery about 100 months later. I'm currently 27 months "post-op" from my bowel resection surgery. Prior to this, I hadn't thought my surgical "remission" by months. It's consumed my thoughts a few times in the past couple of weeks. Would I need surgery before the "100 months"...what if I never needed it again? I'm sure many of you have endured several surgeries in a year, and may laugh at this figure.
Life with inflammatory bowel disease is such a mind game.
For all we know, we may never have another flare. But to us, we know it's inevitable. When people tell me that maybe I'll never be hospitalized again, I kindly let them know that's simply not possible. It's like trying to explain to my husband that I'm not really the best candidate for a Flexible Health Spending Account. For those of us with chronic illness, we know we'll have plenty of doctor appointments and tests, but we never know when that next hospitalization is going to be. What if it's an amazing year where we manage to stay out of a hospital gown for an extended period of time... or what if we find ourselves being reacquainted with the ER staff more often than we'd like? So much of the disease is grappling with the fear or what's to come.
Thinking about your own personal patient journey, I'm sure you can attest to wondering when the rug is going to be pulled out from underneath your feet next. The thoughts that creep in your mind, day after day, are relentless. I go to bed with them and wake up with them. Even after not being hospitalized since my surgery in August 2015.
This disease isn't something you only worry about when you're tethered to an IV pole. It's with you every moment, of every day.
One positive thing I can tell you after having 18 inches of my intestine removed, and after having a c-section, is that once you've had surgery, you're much more prepared for what's ahead. You know what that burning surgical pain feels like. You know what to expect as they roll you into a bright white room with blinding lights. You know how it felt the first time your feet touched the ground and the first time you walked that hospital corridor. You remember how it felt to be able to tie your shoes for the first time without wincing in pain. I know if I'm told I need an additional surgery to treat my Crohn's, I will feel much more at ease. Been there, done that.
But regardless, nobody likes to be the patient. Nobody likes to have to recover. The best part of all is that each setback and road to recovery allows us to rise again and be even better than before, in every sense of the word. So, when I hear that "100 month" statistic about IBD operations, I repeatedly tell myself to focus on the now. Try not to fear the future. And take this battle one breath, one bowel movement, one hour and one day at a time.
What type of IBD have you been diagnosed with?