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.
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.
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.
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!
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.
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.
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.
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.