I was diagnosed with IBD on December 28, 2014 after my first ever colonoscopy, it was such a beautiful way to bring in the New Year! 😉 Little did I know how the next two years would be such a rollercoaster of life… I hate rollercoasters 🙁
I had no clue what colitis was
When I woke up after my first colonoscopy procedure, I was calm, eating animal crackers and sipping apple juice waiting to hear from GI on the verdict. He came to me and said “you’re very sick, you have active colitis and we’re going to start you on an intense medical treatment.” Nothing raised an alarm to me because I had no clue what Colitis was and thought, “What’s the harm? It’s just a few pills”… 4 months later, I was admitted to the hospital after my body refused to digest gatorade and chicken broth. During my stay at the hospital I was treated by two different GI specialists and they both debated on which IBD disease I had. When I was discharged my diagnosis went from Colitis to active IBD… okay great
Months later after my massive moon face and 8 months use of prednisone was not stopping the bloody stools, my GI said let’s start Humira. My first phone conversation with my Humira Ambassador was how I have Crohn’s Disease, I responded, “when did that happen?” I immediately called my GI’s office and they stated due to the lab/test results from my stay in the hospital and how inflammation was in the upper part of my colon I think you have Crohn’s Disease… Ok thanks for letting me know Doc!
I was so frustrated by the lack of communication and a clear explanation of my diagnosis, that I started to actively seek a 2nd opinion.
I first spoke with a friend’s father who was a GI and when I explained to him what I think I have, he laughed in my face. He said, “you should know what you have and where the inflammation is, it’s very lazy of your GI to not take the time to inform you properly”. To many this doctor was considered an expert in Gastroenterology, but when a person is trying to figure out what’s wrong, please do not laugh and be condescending. That was the last conversation I had with him. I kept searching.
A couple of months later, I moved to another state and was still taking my bi-weekly Humira shots. I eventually found a GI at my new location and before making any assumptions or an attempt to guess my diagnosis, he said; “let’s do some lab work, a colonoscopy in a few months, and I need all your records from your previous GI office.” After all of the above was done, he said “first your colon is in great shape so your previous GI did something right, and after reviewing all of your labs since 2014, I think you have UC…”
So back to Colitis it is!
I do not know why I care so much about which disease I have, I guess it’s a sense of belonging? When you know your illness that’s how you find your community and are able to create a special bond with others. Also, more people know about Crohn’s than UC, but overall majority of the US population do not know what IBD is… so why does it matter? but it matters to me, and the millions of us that are fighting the battle daily. I just wish more doctors would take into concern the effects of playing a guessing game with peoples’ health, it’s not a game to us.