Some things I've learned while having Crohn's

By suzan

3 min read

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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SusanHU Community Admin
Thank you for sharing your story Suzan! It can be so difficult to remain positive at times but it's a great reminder that it can also help. I love that you share real tips and don't sugarcoat your experiences. Thank you for being part of the community and we hope you'll keep sharing! You may also want to check out our forums - I think you may have thoughts to add on some of those topics as well! <a href='https://inflammatoryboweldisease.net/forums' target='_blank'>https://inflammatoryboweldisease.net/forums/</a> - Susan (InflammatoryBowelDisease.net Team Member)
cherylc Member
You are so right about all of it. Crapping yourself in the store, alone in a far off unused toilet sweating and dizzy, surgeries, emergency rooms and on and on and on. But the one thing you are most right about? Now. Right now. In this moment we are alive, we still breathe, we are still here. My struggle started in 1969 and I am still here. I have thought many, many times over the years how lucky I was to be born when I was so that I didn't die at 17 when my small intestine separated from my large in the middle of the night. I woke up the next day in the hospital because my mom woke up feeling something was wrong and found me passed out on the bathroom floor and because medical science was where it was in 1975. I should have been dead more than once but I am still here. Thank you for sharing that because coming to that realization and embracing each moment as it comes, finding the glimmer of light in the darkest of places... THAT is what each and every one of us with this illness must learn. An emergency room nurse once came up to see me the next day after one of my blockages that brought me to emergency followed by admission. She wanted to know how it was that I was so calm, so resolved when I had this horrendously painful thing happening to me and yet I did not cry or scream in pain, when others in emergency with far less painful problems were screaming in agony. I had never thought about it before that so I was surprised by the question. I smiled at her and after a moments thought I told her that I lived with pain every day which, I suppose, made me more tolerant of it. I told her people that normally do not deal with horrible pain on a regular basis have not learned how to deal with it when it happens to them. I suppose this philosophy applies to all of what we with Crohn's go through every day, not only the pain. Embracing it, all of it, and learning to live with it, learning to be in control of your life by not letting the disease control your life. Like having a special needs child that you know will never move out and will always be there making demands of you that you do because you love them? yeah that's Crohn's disease. You just have to love yourself and life enough to do what you need to do, on moment at a time.
thedancingcrohnie Moderator & Contributor
Absolutely love your outlook. We really are warriors and through our suffering comes much strength! Living in the moment is such a key to living life well. Being present, being in the now offers so much freedom. Thank you for sharing this with us. I found it to be so refreshing to read and I wish you nothing but health in this new year. Always dancing, Elizabeth (team member)
Matt Nagin Moderator
Thanks for sharing! You have been through quite the intense ordeal. My heart goes out to you. I enjoyed these tips. Acceptance and being present are definitely important. Take Care! Best, Matt (Team Member)