Little did I know that my journey was really just beginning and it was going to take a turn for the nasty. In February 2013, I had my colectomy surgery (removal of the colon/large intestine/large bowel), donating the organ to research in hopes of finding a cure so others don't have to go experience my story for themselves. I'm planning on writing a completely separate post about the colectomy, so I won't say much about it here other than we were all hoping that this was where the story would end.
It was about a month after my colectomy when I knew that things weren't going well. I was still passing a lot of blood, having low energy problems and just feeling plain awful. At first the doctors were wondering if it was just that I was a slow healer from the surgery, so we gave it a bit of time. By July/August we knew that it wasn't just a problem of "not healing" that there was something else going on. Despite my earlier major blood loss from the bleeding, my body always kept up and my blood levels would stay normal (surprising my docs!). Now, my iron was basically 0 so I spent my summer getting weekly IV iron infusions. August rolled around, the doctors decided to go in and take a look at what was going on again, and discovered for the first time that I had inflammation in my stomach and MAJOR inflammation in the duodenum (the first area of the small intestine after the stomach). The doctors said that this type of damage could be seen with Celiac Disease, so I went on a strict (and horrible!) gluten-free diet for 6 months. We bought new toasters, learned new ways of cooking, and tried every type of gluten-free pizza out there without finding one we liked. Not once did we cheat on the diet. But the diet wasn't the problem.
After 6 long months gluten-free, the doctors went back to take another look inside and found that things were even worse than they had been. I could have told them that from how I was feeling! The doctors started me on Humira, another biologic medication designed to suppress the immune-system similar to Remicade that is injected every 4-12 weeks like Remicade. The Humira shots were painful, I'd rather have an injection of just about anything else. But if it controlled the symptoms it would have been worth it! Unfortunately the Humira left me looking like a car-accident victim. I had at one point over 80 bruises on my body. Here's my legs: