Some things I've learned while having Crohn's

Last updated: June 2020

I was diagnosed in 1999, but was sick for a long time before that. I've had 16 surgeries, four that were over 9 to 12 hours long. I've been bowel incontinent and s*** my pants in the grocery store. I've been so sick I couldn't get out of my car and spent hours there. I've been in the ICU, stayed home for four years, lost most of my friends, and have relatives that believe I'm not sick. Yea. And more.

So here are a few things I've learned:

It all depends on attitude and acceptance.
Yea. I know. Hate me now.

Acceptance doesn't mean you have to LIKE it. It just means you accept that OK, this is what's happening. My body is a science project and this is interesting. (Like when I got my first fistula. I'd told myself that would be the limit, but I accepted it and now have four.)

Accepting is not fighting, tensing up, wishing it wasn't so, pushing against it crying, freaking out. I can relax a little. Fighting and getting tense only put a mental horror show on top of the already not-so-fun bits. Controlling that urge to hate and fight and going nuts has helped me more than anything.

I also choose to have a good attitude, even when I'm in a lot of pain I make an effort to tell myself, "You can do this. You will survive this. You've done it before and you can do it." (I remember sitting on the toilet in the basement of a university where no one goes, in so much pain, triggering my vegas nerve so I was dizzy and felt faint, sweat dripping off my nose, telling myself this over and over, and yes, I survived and slowing walked to my car. But it was h*ll and I never want that to happen to me or anyone else, ever.)

So those are my two best things: accepting whatever science project my body is doing and looking at it as interesting.

My glass is overflowing

I also tell myself my glass is overflowing. Just telling myself that helps. If this was 20-30-50 years ago before Humira and the drugs we have now, the surgeries they can do, I'd be dead or suffering a lot more than I do already. I can get CT scans and don't have to have someone cut open my body to see what's going on and I go to a good emergency room where there are people to help me. I have the internet and a phone and can connect with people. I have TV and movies and a library that delivers books. And I have a big choice of what to eat. I can drive myself places even when I'm feeling horrible and sit in my car and look at trees and stuff. None of that was possible years ago.

And I stop and put my whole face into roses and breathe in the smell and feel the touch of the petals. I really do that. Truth.

Living in the moment

I am also right in the moment. Pain taught me that. I don't think about the future or the past and I don't have the yadda yadda yadda going on in my head. No talking in the mind. Just right here. I am just aware of my breathing and am in the moment. Huge, that. Learning to meditate and using my breath (It's always with us), BIG HELP.

Rock on, us. We are the warriors. Even on a good day we suffer more than other people can even imagine. We are tough, we are wise, we are surviving.

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