I was diagnosed with Crohn’s Disease when I was 18, my senior year of high school, when the stress of coming life changes were hitting a peak. It took me years until I could deal with my disease – years until I could even handle reading a book about it from cover to cover without skipping the parts I dreaded most. The parts I’m dealing with now.
Lets face it: life is pretty hard to handle without having an illness on top of it. In the past 10 years, I’ve managed to graduate college, move to a major city in another state, find a full-time job, pay bills, move twice within Chicago, and then move back to Cleveland. Honestly that’s just normal life stuff and thankfully I’ve spent the past 8 years with my partner in crime helping to lighten the load, but when you add doctor’s appointments, blood work, colonoscopies, and more poop talk than you can imagine, it gets to be a bit much.
I don’t want to make excuses, though. I need to remember to be thankful that I went for over 10 years without needing surgery. I know that when you’re in the thick of it, it’s hard to see the bigger picture.
Since I was diagnosed in 2005 I’ve kept this all mostly secret, sharing the truth only with those closest to me. However, I’m beginning to realize I can’t keep it secret anymore and that I don’t actually want to try. It’s very much a part of who I am and has become something I can’t ignore or, honestly, hide as easily. I don’t really want to hide anymore, which is why I’m writing this.
A month ago I woke up from surgery to find that what I had been afraid of for a decade had finally happened: I had an ileostomy.
I don’t think I ever told anyone how scared I was of maybe dealing with this someday – I just assumed that if you knew anything about my disease, you knew this was a possibility and a terrifying one for anyone to contemplate. In the months leading up to surgery I often became depressed. “I feel blue,” I’d tell Ed and he’d become a ball of optimism and cheer, which if you know Ed is not exactly his natural state. I fell in and out of worry, which only escalated as I got closer and closer to the date.
Know that this portion is temporary
even though it feels like forever.
Since coming home from the hospital I’ve wanted to go back. Life was much easier on the inside – I didn’t have to cook for myself or think about how the food I was eating was affecting me. I didn’t have to keep track of what was coming out of me. There were nurses and staff to do that and I attempted to be overwhelmingly nice and courteous because I knew I didn’t want the duties I’d be taking over from them.
I’ve been told overwhelmingly that I’m doing a good job, that I look great, that I’ll be okay. I want to believe, but truthfully I just want it to be over. I’ve been counting down the days and weeks until my reversal surgery, knowing there are so many events and so much time to get through between now and then. I can only hope as the weather improves and my days fill up with responsibilities that time chooses to pass more quickly and I’ll arrive at June faster than anticipated. I’m ready for it. In the meantime I’m going to try to be open and honest and maybe that will provide me a little relief.