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

Alright, I'm very wary of this , but I'm going to give it my best. It was finally happening. After months of feeling awful, Maggie was finally going to the doctor. Or maybe it had been years. Who knew? She couldn't even identify what health felt like anymore, all she knew was that something had to change and this felt like the first step. She sat in the backseat of her aunt and uncle's car on the way to the hospital, (she couldn't even get herself together to make it to the appointment on her own) wondering what the doctor would be like. Her experience with gastroenterologists had not been great so far. "Clearly," she thought. "Just look at the mess I'm in." But as she walked in, she knew this guy was different. The office was comfortable and soothing. Copies of the New Yorker sat on an end table between two cushioned chairs. Maggie walked up to the counter where the nurse sat and said she was there for her 9am appointment. The nurse ha...

Introducing: Crohnicure! The amazing new cure for Crohn's Disease! ...Nope. I can't do it. I can't make up a cure for Crohn's. However I try to write the next sentence of this announcement, it always ends up way too snarky to be made public. The thing is, we aren't even sure what causes Crohn's. Sure, there's a lot of speculation out there, but nothing certain. I know I have a gene that caused mine, but the rate of disease in my family has increased dramatically and we have little clue as to why. We just don't know that much about the disease. And, honestly, I don't care to talk about finding a cure too much. I think I've said this before. There are a lot of people out there devoting time and resources to finding a cure and they're doing a lot better job than I ever could. I feel like my place is to talk about the bodily, emotional and cultural impact of Crohn's. I have something to contribute to that conversation.

When I first read today's prompt  to pick my five ideal dinner guests, my first thought was, "Easy. Tina Fey, Amy Poehler, Maya Rudolph, Kristen Wiig and Melissa McCarthy. Done." While this dinner would be pretty much the highlight of my life, however, my choice does not have a whole lot to do with Crohn's.  So, since this is a blog about Crohn's Disease, let's see if I can find five people that would be a little more relevant to my cause, eh?  I'm keeping Tina Fey, though. She's my number one. She doesn't have a chronic disease that I know of, but I know in my heart of hearts that she's a cool enough lady to be able to chat about poo without blushing. I mean, it's Tina-Freaking-Fey. If you need more explanation than that, you obviously haven't been paying attention and I urge you to read her book while watching a marathon of 30 Rock. Right now. I'll wait. My number two is Robert McRuer , the author of Crip Theory: Cultural...

I've started to write this particular post several times in the last couple months, and today is health activist's choice for HAWMC, which means I get to write about whatever I want. So, I figure now's the time to get it out there. I've written several times about how I named my colon, but I never really specified why, and I think that's pretty important. The truth is that I didn't even know why I was doing it at first. I was going through a really rough flare and reading Are You My Guru: How Medicine, Medication & Madonna Saved My Life   by Wendy Shanker  (which you should totally pick up). I had read a review of the book on Feministing.com and it sounded really interesting, so I bought it on Amazon. At one point, Wendy visits some sort of non-western medicine practitioner (I can't remember the proper terminology, it was a while ago...) and is asked whether she's named her liver, the organ that was causing the most trouble for her at the time...

I've been thinking about this a lot recently. How, in my life, there are a series of identifiable moments when someone said something and it opened up the world in an entirely new way. These are often called "aha moments" in the feminist community. I've had a lot of these moments. Not all of them have been these incredible moments of clarity that allow me to better identify and speak about the injustices of the world, many of them have been much more personal. Instead of these sweeping realizations, they are slight awakenings. This does not mean that they have had a smaller impact, however. In fact, I think these  moments, more than the grand moments, change the way I live my everyday life. I've had a few of these moments in relation to Crohn's, and I know I'm bending the prompt (to pick a quote and write about it) a little bit here, but I'm having a hard time choosing which of these moments was more important to developing my understanding of what...

The scene: You're sitting on a comfy couch having a conversation with a good friend or a family member. Someone you're very close to. Maybe you're having a cup of coffee/tea or a glass of wine. It's been a good night of sharing with someone you trust. The issue you're talking about doesn't necessarily have to be Crohn's, but let's say it is. You're feeling comfortable, so you are very honest about your experience. You decide it's okay, just for a moment, to let go of that tone of optimism you normally adopt when speaking about your disease. It's not that you've actually given up hope, you're just tired. After you finish your tale, your friend/family member looks at you lovingly and says something like, "you're the strongest person I know" or, my personal favorite, "it'll just make you stronger in the end." I've been trying to write this post for a while now, and I've been having a lot of troub...

This comes up a lot. Every time I meet someone new, there's always that point where they know that I have Crohn's, we've talked about it briefly, and they have a vague understanding of what Crohn's means. One day, we have a more in depth conversation about what Crohn's actually is and how I live with my disease. At some point during this conversation, my friend/co-worker/family member/ect. will express their fear of saying "the wrong thing." I totally understand. It's not an easy subject and we aren't really equipped with the tools to speak about disease until we are forced to figure it out. So, don't feel like you are alone. I'm right there with you. I work everyday to figure out the most effective way of speaking about my disease. Also, don't ever worry about offending me. Now, I can't speak for everyone with a chronic illness here, but I promise you, I am just thrilled that you are expressing interest. If you say something ...

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...