Compulsory awareness pimping #IBDAware

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wired up for the pillcam

I already knew quite a bit about inflammatory bowel disease, as my brother was diagnosed with Ulcerative Colitis two years before my Crohn’s diagnosis.  In the past 4 years, the mention of IBD has gone from responses like “wtf is crohn’s?” to instant recognition.  It seems to have gone from rare to common.  There are even drug commercials for IBD now.  Still, the fact that most people know IBD means we with IBD probably shit a lot, and kill a lot of trees, it is sometimes seen as no big deal because the disease won’t kill us.  It just makes us miserable.

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Inflammatory bowel disease effects the whole body, and poor quality of life can lead to severe depression and anxiety.  These are known as EIM’s, or extra-intestinal manifestations.  The symptoms vary greatly between people, and there are lucky ones who are barely effected by active disease, while others continue to experience symptoms while considered to be in remission.

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Heparin, I hate you

Fatigue, fever, joint pain/stiffness, apthous ulcers in mouth (and sometimes on my lady bits), multiple food intolerances, bloody diarrhea, nausea, vomiting, lack of appetite, abdominal pain, and acute kidney injuries are all things I experience during a flare.

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It’s party time.

 

Let’s not forget about drug side effects that can include irritability, weight gain, rash, infections, insomnia, depression, hair loss, and bone density loss.  The hardcore drugs can even cause cancer!

rashy

 

So maybe it’s no big deal because I’m not in imminent danger, but it’s a pretty big deal to me because this disease dictates everything I do or don’t do.

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My second home

I think given the great variability in disease course, that there are probably some who have a yet to be named version of inflammatory bowel disease.  Everything the science community knows about the gut is changing daily, and it is quite a fascinating field to follow.

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IV #100

I wish every day that I could’ve dodged the genetic bullet that gave me Crohn’s, and I’m still learning how to live life this way.  Some days are better than others, but I do know it has made me a more compassionate and patient person, so sometimes the bad comes with a tiny bit of good.

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Still sorta smiley 😉

My hope is that all rare diseases will become as recognized as Crohn’s and Colitis, because with greater awareness comes more research and better treatments.

5 thoughts on “Compulsory awareness pimping #IBDAware

  1. Pingback: Are You IBDAware? | All Things Chronic
  2. What a great post and I relate 200%. My daughter has a rare thing called gastroparesis or delayed gastric emptying. I wrote a post about it today as she’s just performed as part of a huge choir and overcome quite a few hurdles: https://beyondtheflow.wordpress.com/2015/12/01/the-rugged-road-to-school-spectacular/
    I also have a chronic auto-immune disease and have some understanding of Crohn’s through friends. I wrote a post about gratude as part of the 1000 Voices for Compassion monthly blogshare here: https://beyondtheflow.wordpress.com/2015/11/22/the-wisdom-of-gratitude-1000speak/
    Glad to find you xx Rowena

    Liked by 1 person

    • Hi! I also have gastroparesis, and know of a few others who have it. Mine responds well to prokinetics, so I’m one of the lucky ones. It certainly is an ugly disease, and I’m sorry to hear your daughter has to deal with it as well. Thanks for visiting, and I’ll be sure to check out your links when I’m not half-asleep 🙂

      Like

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