This is the story of our lives as IBD patients

Note: As a patient advocate, I wrote this article to raise awareness (not to make anyone feel badly). So please read it with an open mind and I hope you enjoy!

Living with IBD is very challenging. It’s hard work managing a chronic condition 24/7/365 – but somehow, we do it! We never give up, because we are stronger than IBD.

I believe that all my fellow IBD friends will agree with me on this list of concerns that we face:

1. We do battle with pain; many of us are faced with it each day. And some of us, like me, are in Remission. But we still remember and know how it feels to be in pain.
2. We have been inducted into the Super Poopers society. We love pooping! 😊 Many of love using the poop emoji, buying poop hats, shirts, socks, using poo-pourri, hosting poop parties, and doing other poop-related things. We are not ashamed of how our IBD makes us poop more; instead we’ve learned great ways to embrace it.
3. Since we do a lot of pooping, we need to know where all the restrooms are. Because when duty calls…we need to act quickly. Some of us have restroom access cards or use a restroom finder app on our phones.
4. We run through rolls of toilet paper like crazy. As for me, I dislike using public restrooms because they lack the proper tissue paper to finish my “pooping session.”  There is nothing like soft tissue folks, and I love taking a roll of Charmin with me in my car.
5. We are always stressed out about so many things. From school, to work and internships, to personal lives and self-image, to eating enough and what to eat. There is so much that IBD affects. One day we may feel great and like we’re managing everything OK. And the next we might not have the energy to get out of bed.
6. We miss out on a lot of things. I cannot tell you all how many events, school functions, meetings, and more I have missed out on or had to cancel because I just didn’t feel well enough. Canceling plans with friends and family feels especially hard.  
7. We wonder and worry about how the world views us as we walk around with NG tubes, ostomy bags, surgical scars, or our lunchboxes full of formula. I remember in 2014 when I had a NG tube that I would wear for two weeks at a time, before changing it. It was hard having people stare me down in public. Some would be kind and ask about it, and I would explain why I had it. While others would make confused faces, and speculate why I had it in my nose. I tried to never let this get me down.
8. We feel sick, but we don’t necessarily look sick. IBD is mostly an invisible illness – most of the damage & the pain is on the inside. It can be exhausting to have to explain yourself all the time. It is especially frustrating when people don’t believe that your struggle is real.
9. We always need a true friend; someone we can rely on to understand, and someone we can tell anything to.

These nine things might not be exactly the same for all IBD patients, but I bet many of them are. Actually, I invite you to add to the list by posting a comment below. What’s something that you worry about, or manage or need 24/7/365 because of your IBD?

Thanks for reading!

- Christian

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