23 May 2012

My Hate/Hate Relationship with Crohn's

I have been very candid in this blog about my experiences with depression, but it occurs to me that I haven't elaborated much about my experiences with Crohn's disease. What follows is what I wrote for a private Crohn's support group. I was reluctant to share it, but eventually I concluded that this belongs here.

As a child, I avoided lots of foods high in acid content, high in dairy content and things that were likely to lead to scar tissue. It was an instinctual thing, I think, though at the time I was interpreted to be "picky." In my teens and early 20s, it became more obvious that I had to run to the bathroom within minutes of eating. Coworkers once accused me of being bulemic, and only half in jest. It became worse, though like most Crohnies I downplayed it for a while. Where I'm from, that's "bellyaching" and griping about it just invites scorn. "Suck it up and quit your whining," the voices would say.

I was certain it was just routine psychosomatic stress from being in college, working at my family's shop and the flurry of activity that went along with having a new girlfriend. Once school let out for summer, I was certain things would calm down. Eventually, though, it reached a point where I decided I'd rather be teased for making too much out of my discomfort if it meant actually making it go away. I went to my doctor, her new physician's assistant ran some tests and diagnosed me with GERD and prescribed some Protonix for the heartburn. It helped for a very short time, but then that seemed to make no discernible difference in how I felt. I gave up taking the Protonix (my family couldn't afford insurance through our shop) and consigned myself to being miserable.

Then in the middle of the night, as my then-girlfriend was preparing to go to work (her shift started at 5 AM), I was in excruciating pain. I was curled up in the fetal position, shaking uncontrollably and incapable of making the pain even subside, much less go away. She called into work and took me to the emergency room. Eventually, the E.R. doc came in to tell me it looked like Crohn's, but that it would have to be a gastroenterologist to make the final determination. I was treated with IV fluids, steroids and antibiotics and eventually released to follow up with a gastro. who did, of course, confirm that it was Crohn's. I learned almost two years after my colonoscopy that they couldn't even finish that test because of the damage. The camera simply couldn't get through.

Life with Crohn's
I tried to manage to carry on with my daily life as best I could, allowing that Crohn's could and would be an interruption. I was, of course, hopelessly naive. I was only able to even complete my final year at the University of Louisville because my professors were all very understanding and supportive and elected to not hold me to their respective attendance policies. Had any of them wished to have me removed from the class roster and assign me a failing grade, they would have all been well within their rights to do so. I often came to class late and left early. Some sessions, I was there on time but spent the majority of class in the bathroom. More often than that, though, I was outright absent as I was incapable of even making the drive to campus.

As frustrating as that was, it was worse at work. As with school, I was often tardy, in the bathroom or outright absent. The only reason I wasn't fired was because I worked for my own family. Even then, though, they frequently complained about the short notice when I called to say I couldn't make it, 20 minutes before we opened. I couldn't know in advance when I would feel miserable or how badly. That uncertainty came to dominate my daily life.

Every bite of food became a game of roulette. Would this be the bite that put me in the hospital? Every visit to the bathroom was filled with anxiety. What if I saw a lot of blood? What if I had a blockage? It wasn't just that it was inconvenient and often painful. It became the bogeyman. Despite all this, my girlfriend was unfazed and we married 7 January 2006, between semesters of my final year.

Eventually, my family realized that it was impractical (if not outright impossible) to continue to operate the business. My mother's health had already forced her out of it and my grandmother was nearing her 70s. My uncle "worked" there, but he was the epitome of a useless employee. (I know for a fact he often closed the place down and left just because he got bored on the days when he was supposed to work alone.) Without me being 100% reliable, or even 90%, it just couldn't be done. So it came to be that our 20th anniversary year was also our final year. I still feel badly about that.

I tried to find ways to carry on in a worthwhile capacity, but the unpredictability continued to cause problems every step of the way. I missed at least three job interviews because of Crohn's. Before I even graduated with my bachelor of arts degree, I met with someone in the admissions office at the graduate school. I explained my medical situation and she told me pointblank that it was foolish for me to even bother trying to get my master of arts in education and go into teaching as I had planned. I would be lucky to even function as a student, much less could I handle the logistics of being a teacher. So much for the dream I'd been working on for several years.

Being a non-contributor was more than just a financial drain on my marriage. I had dealt with depression issues off and on since my youth, and eventually they overwhelmed me. This time, all the self-doubts and self-criticisms had their evidence to win their case. I really was worthless. I came to resent every day that I woke up. I came to my wife about all this in January, 2011 and we went to see my doctor. Over the next few months, we experimented with anti-depressants, but nothing worked. Each failure felt like one more door closing on me, pushing me down a hallway toward the inevitable.

I have always been interested in social events and politics, and the open hostility towards people like me vis a vis health care became another bogeyman in my life. I had no right to expect any help from anyone, it was selfish of me to even exist and the only decent thing for me to do was either suffer alone or go off and decrease the surplus population. I resented being alive and so too did my fellow Americans. Wolf Blitzer, moderating a debate of Republican candidates, asked Ron Paul what to do about a hypothetically uninsured patient. "Let him die!" yelled someone in the audience. The outburst garnered applause, but not one admonition from a single candidate. The message was clear: I should die.

Ultimately, my wife insisted I check into a mental health facility after my third near-attempt. It was tremendously helpful, but the morning I was discharged I learned that my wife was leaving.
For more on my hospitalization, see "Confessions of a Therapy Patient."
Since being discharged, I've made a point to speak out about my experiences because I know firsthand how troubling it is to feel isolated by these conditions. I can't treat anyone or help with the research or anything like that, but I can hopefully help people just not feel so alone, and maybe even demonstrate to them that there really is more to our lives than prescriptions, missed appointments and unpayable medical bills.

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