Friday, December 14, 2012

A history of... shhhhhh.....crohn's. And, learning to accept.

Why does it seem like so many of my Crohns and ostomate friends have been getting sick lately? Or having unpleasant setbacks with their disease?

Is it something about the time of year? The stress of school, work, and family as we all get closer to the end of the semester and the holidays?

"I never make it through finals without having at least a little flare up", my friend Jacinta said. I was taken aback. Two or three anticipated flares, often landing her in the hospital, as the price of academia?! Seriously?

This was in 2003, when I was working full time as a Paramedic and living in a tiny Philadelphia appartment. She was my housemate, who also had Crohns. She was one of... no, scratch that. She was THE first person my own age who I met who had Crohn's Disease, or IBD at all for that matter. And, she was a stunningly beautiful, long legged, bubbly, athletic, Ivy-league lady! Maybe in the back of my mind I had always thought people with Crohns were hiding somewhere because they were too socially damaged or otherwise unpleasant to come out. And, who would talk about Crohn's anyway? Wasn't it something to be ashamed or embarrassed about?

It might seem strange that I had never previously met anyone with Crohn's, in all of my years as a child going to doctors appointments and all of my years in and out of hospitals from the age of about 8 until then. But, somehow, it's true. I was never offered the opportunity to talk about my illness, or connect with others who were experiencing the same fears, pain, and often isolation that I was - all on top of the struggle of surviving elementary, middle, and then high school!

My parents treated my illness as a burden, or as some sort of punishment from the universe for something that I should have done better in my childhood. They alternated between avoiding even saying the word "Crohn's", and shaming me for it, and sometimes oversharing details about my illness with friends and relatives in ways that were the exact opposite of supportive. But, for the most part, they defaulted to pretending that it was non-existant, something to be hidden away. During this time, there was no internet, then the internet was new and my family didn't have a computer, and then finally with computer and internet access I didn't even know that I might be able to find community or information online. There wasn't the same easy access to online community and resources that we have today. And, I'm not even all that old!

As the years went on and my disease worsened, with increasing failure of treatments, and hospitalizations tallying in the tens, my parents years of shame and denial left them clearly unprepared for the reality of having a critically ill pre-teen. At one point I was even threatened with something that made absolutely no sense to me at the time; that if I didn't get better/be a better patient/do whatever it was that they thought I should be doing at the time that I would be "pooping in a bag". That sounded pretty gross, and also like a sick and twisted threat. I remained mystified by this for years afterwards.


Back to Jacinta, my lovely Crohnie housemate in a slightly overcrowded West Philadelphia apartment.

She wasn't ashamed about her illness, or how it had effected her life. She was happy to talk openly about growing up and being diagnosed with Crohns, giving up salad for good, what past treatments with Humera were like, how a fuzzy blanket and a heating pad got her through chills during flare, and finally... about the time when she got sick in high school. She got really, really sick and ended up not being able to eat for months. She refused to be hospitalized and stay home from school, instead electing feeding by a nasogastric tube, which she inserted HERSELF! When she finally did end up in the hospital, after months of trying to go on with life despite her illness, she was in pretty bad shape and ended up having ileostomy surgery. At that point, she still stayed positive and adjusted to her new life. Around the kitchen table in Philly, she told funny stories about having to educate new resident physicians about her altered GI anatomy, and about botched bag changes.

I was simultaniously in awe of her, floored, and horrified. But, mostly in awe of her and fairly sure that I would never be able to be as accepting of my own IBD as she was, and definately wouldn't be able to adjust to living with an ileostomy if, God forbid (!), I ever had to.

Yet, somehow I have adjusted.

Sometimes I have a hard time staying positive, especially during weeks like this when I've spent more time in a hospial bed than my own. But, I do find that one of the things that helps me the most is connecting with other people who have Crohn's or an ostomy, and sharing my own experience. Maybe my experience will help somebody else adjust to having an ileostomy, but even if it doesn't acheive that specific aim, I hope that it at least helps remove Crohn's disease from somebodies list of things to be ashamed of or silent about.

And, just as important as connecting with other Crohnies and ostomates, is being comfortable enough with non-Crohnie friends to allow them into my life. Keeping it a secret means no hospital visits! And, as far as I'm concerned, friends and friendly faces make a hospital stay that much less boring, anxiety-making, and unpleasant. So, friends, if you are reading this, thanks so much for all of the support and cheer this week!


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