This post is coming one day earlier than I had anticipated but, just like life, sometimes we can't predict our most inspired moments. Over the next few days, I will have two major UC-related moments. Tomorrow, March 31st, will be my 1-year anniversary of my pouch's creation. It was a rough year, but I made it!On Monday, I will have my second pouchoscopy. The first was done just before my takedown surgery to ensure that my pouch was ready to be used. A pouchoscopy is essentially a colonoscopy of the pouch. Since I no longer have a colon, the camera will look for leaks, poylps, fistulas, and any other issues in this man made, substatutive organ. I will have this procedure annually.
I guess the primary reason I am writing today, though, is not celebratory, nor is it to provide informative updates on my condition. Today also marks my eighth month at my new job, an environment and position that I am just beginning to become comfortable in. It hasn't been easy. At this time last year I was forced to leave my position at Morgan Stanley as I became too ill to work and was about to undergo the most trying period of my life; undergoing two major surgeries (that came with unexpected and serious complications and, then, a third massive surgery on my intestines). I had friends at Morgan Stanley. Friends that provided emotional support in the workplace, a locale where I spent the majority of my time. And let me tell you, I needed that.
Starting this new job at the time I started it has felt like an emotional marathon, requiring constant efforts at making friends and offering niceties when, in reality, I have mostly felt unstable, both physically and emotionally. I have struggled to be both cautiously open and gingerly discreet about my chronic medical condition. Of course, I had to explain why I was abruptly absent for three weeks shortly after taking the job (an acute onset of a complete bowel blockage, requiring extensive surgery and a nearly two-week hospitalization). I had to answer questions about how I had lost fifteen pounds in three weeks, fend off inquiries as to why I don't want to try the salad, and have been required to offer explanations of frequent requests to leave early to attend doctor's appointments. And that is all fine and good. But there has been one thing that has really been bugging me. Actually, it's been eating away at me like a preying mantis feeding on an innocent bumble bee. Disturbingly insidious.
The problem is, talking about your digestive tract is taboo. How can I explain my sudden absences, my drastic weight loss, my inability to help lift heavy boxes, or eat most of the company-supplied lunches? How do I deflect questioning without seeming elusive or feeling dishonest with myself? And, most importantly, how can I get the word out that Crohn's disease and Ulcerative Colitis can be two of the most debilitating diseases on the illness spectrum when it is too f&*king taboo to even mention indirectly? When people say to me, "You had to have your large intestine removed just because of colitis?" I am not surprised. We, IBD patients, are not allowed to talk about being sick without being shunned, ostracized and detested.
I am excited about my pouchoscopy on Monday. I am excited because I have been undergoing annual and bi-annual colonoscopies since I was a 17 year-old child. This is the first year that I will not have to fast. I will not have to drink that disgusting concotion that tastes worse than dog shit (oh, and yes, UC patients are now being asked to to swallow worm eggs from other people's shit to assuage their symptoms). But let's not talk about that, because even though this somewhat disgusting practice might offer life-changing results for millions of people across the globe, we wouldn't want to talk about shit, now would we?
So, now that I am finally feeling comfortable with some of my co-workers, I said to the woman who sits beside me, "I am so excited for my three-day weekend. Even though I have to have this procedure on Monday, I am so glad that I don't need to fast! See there are good things about not having a colon!" She shot daggers at me with her eyes and said, "Please don't talk about that around me." Now, this was the first time that I dared to mention something about my medical condition in front of her since an incident in December, when, during my first week back at work after my surgery I said to her, "I think I may need to leave early as I am having trouble sitting in my chair. My incision is not quite healed." She had given me the same intimidating glare and the exact same verbal response as she did today.
Obviously, my attempts at being more open and honest about a physically and emotionally debilitating illness that has consumed almost every aspect of my life for the past ten years have been met with insensitivity and even scorn. And today I'm feeling fed up. Do cancer patients get treated so indignantly if they talk about nausea from their chemotherapy? Do masectomy patients get ridiculed because they are flat-chested? Ulcerative Colitis and Crohn's disease sufferers have an added challenge put on their plate. How do we stay emotionally stable when people diminish and vulgarize our disease?
My name is Katie Pearce. I have no colon. I have no rectum. And feces, shit, poop, crap, bowel-movements, and excrement are a major factor in my day-to-day life. But, please, keep in mind, I do have feelings.