Crohn's Chronicles: A blog about Crohn's Disease

Dearest Myrtle , We've had our ups and downs over the past year or so. From near death to thriving life, I know it's probably been just as hard for you as it was for me. I want you to know that, while I know I often take my anger and frustration out on you, I understand that it's just not your fault. If it weren't for that pesky immune system always coming between us, our relationship could've been so much easier. Although, then I probably never would've really taken the time to notice you. So, I don't know. You tell me what's better. You've done your darndest to keep me alive over the past few years. Like that one time, when you formed completely new pathways because you were so swollen that no waste could go through you? Remember that? I mean, it wasn't an ideal situation for either of us, but it kept us going for a while, and I guess it was a pretty smart move on your part in the end. So, thanks for that. And now, Myrtle, we're on t...

I attended an event for my new internship with the Neighborhood Writing Alliance tonight. It was pretty incredible to see the different lives the organization has touched and to feel that I am a small part of that now. However, these types of events always build up to a slightly awkward moment: The moment when the food comes out. It was mostly finger food, lots of veggies and things. It looked wonderful, but since I was working the event I decided to stay on the safe side and just wait until I got home to eat. The last thing I needed was for Myrtle to throw a fit while I tried to garner donations for the organization. As I sat next to my fellow intern listening to the series of fascinating speakers, however, she turned to me and asked if I was going to eat anything. The question was entirely innocent and absolutely nothing out of the ordinary, but it still set my mind whirring trying to find a simple answer. Should I just come out and say why I am not eating? Do I want to take the ...

Erm... just saw that typo. Minor mistake. They still do great work. Yesterday, I had the pleasure of attending the Crohn's & Colitis Foundation of America 's Take Steps walk at Soldier Field in Chicago. Our team, the Incrohnables, led by the wonderful Angela, walked along the Chicago lake front with hundreds of others in support of further research into the cause of, and a cure for Inflammatory Bowel Disease. While I have some issues with the walk, (the talk of "overcoming" disease that seems to crop up with these events is always a little strange... although I totally understand that it comes from a place of encouragement and caring) I don't want to talk about that right now. What struck me most as I walked alongside this incredibly diverse group of people, each in some way affected by IBD, was the importance of community and a support system. Almost everyone there, as far as I could tell, walked with a team of people. Some small, some large, almost al...

Possibly worse than feeling awful all the time is feeling great for a while and then flaring up. Okay, maybe not worse, but incredibly frustrating nonetheless. For the first time in years, I have felt like myself for more than a couple months. (Although, as I have come to realize, Crohn's is part of my "self.") I go places and my first thought is not whether there is a public bathroom close by. I wear heels without having to worry whether I will be able to walk the next morning. I treasure these things, which so often go overlooked, because they are not default for me, they are luxuries. For years I worried about these things almost constantly, and I had forgotten how freeing it is to be able to let those go, not entirely, but a little bit. But then some small thing happens. I am stressed about school, rehearsals, or issues in my personal life and Myrtle begins to reflect that stress. The weather changes and my joints freeze up. I get my period and the flare that ofte...

Denial is a way of life for me. I’m not in pain. I didn’t get sick twice last night. I can make it through the day. I’ll be fine. I don’t need help. I could go without my medication today. I don’t need a doctor. I’m good. Today is going to be better. I'm fine. When does positivity turn into denial? Am I lying to myself when I think, “You can do it, just keep on going.”  Or am I just staying upbeat? Where is the line drawn? Call it mind over matter if you want. I’ve always felt uncomfortable with that expression. More than anything, I want a place where I can talk about my disease. No one talks. Denial is not just internal, it is forced on you. We all do it. When someone says, "It will just make you stronger in the end!" they negate and deny what I go through everyday. There is no end. It's chronic.  You blame me for my disease, blame me for letting it get this bad, when at every turn you are denying me a place to talk about it. How messed up is that? I'm starti...

As I sat on the ugly yellow floor of the bathroom in my suite my first semester at Cottey College, I wondered what was happening to me that my body would rebel against itself so violently. What was happening to me that I would wake up at five o’clock in the morning with a pain in my back far beyond anything I had ever felt before and proceed to get sick seven times within two hours? I had no control over my body, and after those two hours nothing had improved. Luckily, one of my suitemates got up early to study for a test and discovered me hobbling back to my bedroom. She rushed me to the local emergency room where they ushered me into triage and asked me a series of questions, one of them being the most pointless question ever to be uttered by a human tongue, “Can you tell me how much pain you are in? Just on a scale of one to ten?” I looked up at her from the keeled over position I had been in for nearly three hours by that time and muttered, “Ten.” Although, what I wanted to say was...

My dancing body. I pause at the barre, my stomach cramps and fondues are too much for me to handle. Close my eyes… gurgle, gurgle… relief. I can keep going. My weight fluctuates. One week I have no appetite. I drop five pounds. The next, I’m ravenous and gain it back plus some. I eat when I want to, because in an hour it could be a different story. Be careful though. Don’t want your rumblings to disturb the other students. Maybe just a light snack. Nope, bad idea. I get weird looks from the other students. I grimace and smile, always making light of it, got to keep other people comfortable. Internally, I curse Myrtle. That’s my colon. Yes, I’ve named her. Like Moaning Myrtle, the ghost from Harry Potter who lives in toilets? I got the idea from a book. Myrtle doesn’t care for tights and a leotard. Too constricting, puts pressure in all the wrong places. Grumble, grumble…

Alright, I figure if I am going to do this I need to do some filling in about my life and how it is shaped by Crohn's. Here are the things that you absolutely must know about me: I am a dancer/choreographer. I am currently pursuing a BA in Dance with a double concentration in Dancemaking and Dance Studies from Columbia College Chicago. I graduate this coming May. (WOOO!!) Obviously, dancing with a chronic disease is a complicated and confusing thing.  I was diagnosed with Crohn's my freshman year of college, but had been having seemingly random symptoms for years. At the time I was attending Cottey College, a small, two-year women's college in Missouri, where I grew up. It was a rough time and, after being diagnosed and getting set with a course of treatment, I never really talked about my disease. I, like many others who face illness, was determined not to let it define me, and so I did not discuss it, or really even think about it. Eventually, this denial wreaked havoc wi...

This idea came to me when I did a google search for blogs about Crohn's Disease. I found that, while there were a few people out there posting about the disease, very few of them discussed what it is to actually live with Crohn's. Mostly, they were posting medical articles and the like. While I totally understand and appreciate the value of staying up to date on current medical findings, I have often been frustrated by the fact that no one ever talks about the actual process of living with a chronic illness. So, that's what this is going to be. I want to create a space to discuss what it is to live with Crohn's, not only for myself, but for others as well. Once we can acknowledge that Crohn's affects not only our physical, but our emotional and mental well-being, I really think life will get less complicated.