Over a year ago, I quit my job and threw myself into wrestling my Crohn’s disease into submission. I was firm in my thinking and knew that I could overcome the worst of my symptoms if I tried hard enough. Even though there is no cure for this often-embarrassing autoimmune disease, Crohn’s patients can achieve a state of “remission” where the disease is not active.
I’ve always been a firm believer in “mind over matter”, and I was anxious to get back to my pre-Crohn’s life with the goal of achieving approximately 10-15 years of peaceful digestion.
Yes, my lovely readers, I can hear you laughing now. What is peaceful digestion, you ask? Well, it’s not having to run to the restroom in the middle of a family dinner after you’ve only taken two bites. It’s not waking up in the middle of the night every single night, running to the restroom before you’ve even opened your eyes.
And it’s not having an accident in public or in front of your children, who consider you one of their strongest heroes.
From the moment I first heard a doctor utter the words, “Crohn’s disease,” I wanted it to disappear. And worse, yet, I thought it was possible. I thought that Crohn’s could become a distant memory because of the hope my doctors gave me.
My first gastroenterologist told me I had “mild” Crohn’s and not to worry about it. It wasn’t a “big deal”. Just take some giant horse pills a million times a day. Others told me that I would achieve remission with the right combination of medications. When that didn’t work as planned, I was told I had a moderate-to-severe case and would achieve remission if I had a small bowel resection to remove scar tissue that was causing frequent obstructions and hospitalizations.
After two surgeries and even more obstructions, I was told by an inflammatory bowel disease (IBD) specialist that my disease was in remission and my problem was once again a “plumbing issue”. When the IBD surgeon opened me up a third time, he was forced to remove over two feet of active Crohn’s disease in addition to the high grade stricture they were after, proving that my disease was not in remission after all.
I was told by another GI that I had stricturing disease, which causes rings of scar tissue that block the bowel, and that I shouldn’t worry about fistulas, or abnormal connections where your intestines create a tunnel from your bowel wall directly to another organ, including your skin. I was also told that my disease would be limited to my small bowel, but then developed a perianal abscess which turned out to be a fistula. The fistula repair required yet another painful surgery and I was really unprepared for how long it would take to sit down without wanting to cry.
After seven years of this, I thought I was the one who was doing something wrong. If each doctor was telling me these hard-and-fast rules of Crohn’s disease and my body was defying each and every one of them, then how could I rely on my body–or my doctors–to not betray me at every turn?
I began to doubt myself, stuck in a dark place, wondering if I would ever find this crazy key to “remission”.
One thing you have to understand about me is that I’m always listening and learning, looking for that one right answer and I’m not afraid to ask for it. When I talked to my gastroenterologists, I took mental notes and framed each conversation as a lecture–as an attempt to learn, to excel at Crohn’s disease. Another thing you have to understand about me is that I jump too quickly at answers, and am not as flexible as I should be in my thinking.
When I went on my quest a year ago, I wanted everything to be black and white–I had no time for that cloudy gray in between.
I also had a very hard-and-fast definition of remission and what achieving it meant to me. It meant that not only would my medical tests come back with zero inflammatory markers, but that I would feel relief from most–if not all–of my symptoms. Now I know that my expectations were unreasonable, and that once Crohn’s disease walks into your life, it will always be with you, whether you are going to the bathroom 15 times a day or not.
In other words, Crohn’s disease becomes a physical and emotional part of you, and to fight the very idea of its ever-changing nature only makes it worse.
This realization’s led me to a more important and valuable remission–one I like to call a “remission of the mind”. My disease will always flare and evolve and surprise me, but I’ve learned to move with it and evolve emotionally each step of the way. I will no longer judge myself for not being able to pass a test that has no grades.
Like everyone else, I’ve done nothing to “deserve” Crohn’s disease, and having a complicated case of it is not a failure on my part. I know, now, that I won’t be able to move forward in life without Crohn’s being a part of my daily steps, and I’m okay with that. Life will never be black and white and there are no hard-and-fast answers. I’ve decided to go back to work, and I’m looking forward to creating a new life in the complicated, yet beautiful, shades of cloudy gray.