Welcome back! Did you see a lot of IBD warriors sharing their ulcerative colitis or Crohn’s Disease journeys this past Sunday on World IBD Day!?
Social media was flooded with fellow IBDers spilling their guts and raising awareness for this invisible disease.
And as you know, the theme for World IBD Day this year is, “Making the Invisible Visible.”
In line with this theme, I’m sharing FIVE invisible aspects of my life with ulcerative colitis.
Thing Number ONE: Joint Pain
One thing that a stranger wouldn’t know about me just by looking at me is that I deal with autoimmune joint pain. This is called an extraintestinal manifestation because it’s an IBD-related symptom that doesn’t occur in my intestines.
Two years ago, I noticed that my right index finger was puffy, swollen, and discolored. It was a little bit tender, too.
First “Diagnosis”: April 2017
Naturally, I went to my general doctor because, at the time, I had NO IDEA it would be related to my IBD.
The doctor took a brief look at it, and said, “Yup, you hit it on the wall when you were sleeping.” 😂🤣
I was shocked. I know I’m not a doctor, but I understand enough about my body to know that hitting it on something wouldn’t cause it to look or feel like this!
However, I let it go because I figured it was nothing too serious, and it wasn’t preventing me from doing anything.
Fast forward to today, two years later, and it’s gotten worse and has spread to my pinky finger. I also feel random aches in other joints now, too, including my elbows, shoulders, and knees.
Partial Diagnosis: May 2019
I’m working with another doctor now (he suppressed a laugh when I told him what the doctor had said two years ago).
In the last few months, I’ve done X-rays and blood work and EVERYTHING came back normal.
I did an additional blood test a few weeks ago; it screens for something called HLA B27. In short, it’s an antigen that, if positive, is oftentimes associated with a reactive arthritis (AKA an autoimmune, IBD-related arthritis).
The doctor’s office sent me a letter with my results: It reads, “Your results show positive. We will review this next visit.”
It’s interesting how having an autoimmune disease or two rewires your brain. I’m not sad, bitter, or fearful about this news.
I’m actually relieved. I actually smiled when I read the letter. It means after two years, we’re actually getting somewhere 😊
The point of all this is that IBD is much more than an intestinal disease. It’s an invisible illness with sneaky, stealthy symptoms that no one would notice unless I decide to share them.
And I choose to share my story because AWARENESS → FUNDING → RESEARCH → CURES 💜💜💜