At 16, I was finally diagnosed with Inflammatory Bowel Disease after years of consistent symptoms. My family took me to specialist after specialist to try to find a cause for my frequent “stomach upset” and chronic vomiting, but we never got an answer until my symptoms became so severe they almost killed me.
When I was 15, I had my first full-on IBD attack. I use the word attack vs. flare because that’s what it felt like. It happened frighteningly fast. I lost control of my bowels and was passing nothing but blood and mucus, in addition to the Exorcist-style vomiting that left me dangerously dehydrated. It wasn’t until a year later, when I started passing blood again that I had a series of tests that diagnosed me with severe Ulcerative Colitis. Although an immediate total colectemy was recommended by my pediatric gastroenterologist, I wasn’t about to give in to a disease I’d never heard of, so I opted for medication therapy instead.
After trying a version of every drug, diet, and holistic treatment available at the time, and failing each of them (nothing ever induced remission for more than a month), surgery was no longer an option. I had my colon removed when I was a Junior in college, and proceeded to have a 3-step J-pouch surgery done laproscopically. I did my research and found the best, most-qualified surgeon my insurance would cover. Although I had several rare complications including the pouch twisting twice causing a complete blockage, recurrent strictures, and a re-diagnosis of Crohn’s Disease, it never occurred to me that any of this could be caused by surgical error. In my mind, I’d accepted that complications and sickness were just part of my life, which was in stark contrast to my initial teenage reaction of outright denial.
I finally started to realize the affect IBD was having on my mental state and on my life in general after 10 years of diagnosed disease activity. It wasn’t something that allowed me to ignore it-it was something that had to be dealt with. It attacked me on all fronts, I had to reciprocate. So, I began seeing a therapist, doing yoga, and walking the long path to acceptance; a path I struggle to stay on.
In 2010, after having a rare complication from a biologic drug I was using to treat Crohn’s, I began to feel cursed. With my Murphy’s Law history of luck regarding my health, it felt like a cosmic joke-that this was simply what life was like for me-to quote Limony Snicket, “A Series of Unfortunate Events.” However, I never stopped searching for help or answers, and in the fall of 2010, I found a doctor who would change my life. He offered safe alternatives, and proper diagnoses in a matter of days. With him, I was no longer the medical mystery I’d become to previous doctors all over the country. I wasn’t a freak to him. Not an anomaly. I was his typical patient and he was able to help me for three years until my J-pouch finally gave out in early 2013. His name is Bo Shen and he’s a Pouch Specialist and GI at the Cleveland Clinic in Ohio.
I just underwent a massive reconstructive surgery to re-do my J-pouch, and surprise, I had an uncommon complication despite having one of the best surgeons in the world this time around. Of course, I was disappointed to hear I had a fistula or sinus cavity between my pouch and vagina after my barium enema test, but was I surprised? Nope. Did I cry? Yep.
Life with Crohn’s disease is a daily struggle-mentally, physically, and emotionally. Just when you think you’ve got it licked, it sneaks back and reminds you it’s still very much a player in your life. I’ve spent over half my life trying to accept IBD, and most of the time I don’t do a very good job. My knee-jerk reaction when things go wrong is to engulf myself in another project-any distraction will do, but I try to opt for good distractions that enrich my life vs. bring me down. My ideal distraction is something positive that will help others. Something that can provide me with the purpose I desperately need to keep going. A lot of my purpose comes from my work with Girls with Guts. Other times I delve into current IBD research or do pro-bono work as a patient advocate to try to help others in my position. Other times, I write. I also paint, make jewelry, meditate, travel, and spend time with my precious friends and family.
I’d be lying if I said this disease hadn’t taken a lot away from me. It’s beat me to the breaking point, but it’s not broken me yet. It’s given me perspective and an appreciation for the good days that’s inspired me to do things I doubt I’d ever have done without it. I’ve gone SCUBA diving at one of the most beautiful dive sites in the world, I’ve traveled all over Europe, I’ve gone to more concerts than I can count, I’ve rafted one of the most difficult rivers in the world, and I never miss an opportunity to try something new. I’m not shy anymore and I’m no longer ashamed of IBD. I share gruesome photographs on my blog at www.jpouch.net and on my personal social media pages in an attempt to raise awareness. I speak openly about my ostomy. I’ve put myself out there 100% with a disease that society tells me I should be ashamed of, but thanks to IBD, and my experience with it, I know I get to decide how to feel about the things I can control. I can control my reaction to IBD. I can choose how to deal with it. I have very little control, unfortunately, over my physical body. When it behaves, I put it into crazy, yet therapeutic yoga poses, I swim, I travel, I dance to my favorite music-In short, I enjoy it. For this perspective, I am very grateful, but I still struggle daily with acceptance. Because those days of freedom, of enjoying my body, give me a taste of something I fear I will never know consistently. They make those days I receive bad news even more devastating, yet consciously, I choose to go on. I choose to do something positive with my time. Let’s not pretend that I don’t get angry, furious in fact. Let’s not pretend that I don’t lose patience, that I don’t get tired, because I absolutely do all of those things. But I get over it and I realize that this is my life. The time I have is what I have and I get to decide what to do with it. So I choose to have fun-crazy, insane amounts of fun when my body cooperates. I choose to put good things out into the world and help others in a hope that I’ll get some back in return. And I do. Doing something positive for others is one of the most feel-good things you can do. I firmly believe that choices to do good are what keep me going and help me on this long road to acceptance. They are what sustain me and keep me on this path when depression and frustration threaten to throw me off. So are the ladies of Girls with Guts, my wonderful husband, mother, friends, and family. And I’d be doing myself a major disservice if I didn’t throw Liz onto that list. I’m a pretty strong, badass chick to endure what I have and maintain a generally sunny perspective. I hope you are all able to find the same love and purpose for yourselves. I’m very grateful to the work of communities like Crohn’s Forum for supporting patients with IBD, and am grateful for the opportunity to share my story. Blessings and love to all of you.
Written by Liz Jordan from Girls With Guts