When you’re first diagnosed with a chronic illness, especially one you’ve never heard of, you put your faith in your Doctor(s). That isn’t necessarily a bad thing; however, having all the knowledge you can about how that diagnose was reached is also very important.
When I was diagnosed
I had zero idea what Crohn’s was when I was diagnosed and my main focus was how do we treat this and how do I live with this, not how did you come to this conclusion.
I was diagnosed during a hospital stay. I had an ultrasound and a CT scan and based on what they saw I was told I had Crohn’s disease. I was put on a course of IV steroids (Prednisone) plus oral Prednisone after I was released. It did the trick, but every time I got off the steroids I ended up right back where I started. A colonoscopy was booked to see what was going on, and a visual confirmation of active Crohn’s was determined, so back on the dreaded Pred,’ I went.
This course of treatment went on for months, and if you’ve been on the Devil’s tic tacs (a common nickname among the IBD community for Prednisone), you can appreciate how much fun that was . not. In all fairness to my Family Doctor, I was in a small community, on the waitlist for an appointment with a GI in the closest city, and my Doctor did the best he could with his limited knowledge about treating an IBD.
Finally, a Specialist!
My husband’s job relocated us to a major city center, where I was able to see a GI quite quickly. Before she started treating me, she wanted to be 100% sure Crohn’s was what I had. A colonoscopy and a pill came later, her conclusion was the same as the original diagnoses. I’d be lying if I said I wasn’t slightly disappointed. I had hoped that she would tell me the Family Doctor just didn’t know enough about IBD’s and made a horrible mistake. I made my peace with it and started on a course of medications to treat Crohn’s Disease.
As we all know treating an IBD is tricky, medications that work for one don’t always work for others. Two years of medications trial and error nothing was making me feel better, in fact, I was feeling worse. I was told the only option I had left was a biologic. I had been quite resistant to go on a biologic because in my mind weekly injections meant I was really sick, taking pills I could still be in denial that it really wasn’t that serious. I weighed out this option for quite a few months, never coming to a decision before we ended up moving to another state.
Being married to a spouse with a job that moves you, means starting out with a new specialist every few years. This time, boy was I glad I did. Just like my last GI, this Doctor wanted to be 100% sure he was treating me for something I actually had. He took me off all Crohn’s related medications (except one medication which can be used for any IBD) and to my surprise, I actually started feeling better.
Next, he did a blood test called the Prometheus Test – a blood panel which is intended to aid in confirming the diagnosis of an IBD and to help differentiate between Ulcerative Colitis (UC) and Crohn’s disease. Well, wasn’t I shocked when my blood work came back with UC markers. He followed this up with a colonoscopy and took a biopsy, which came back confirming UC.
Know What To Ask For
There is nothing wrong with putting your trust in your health providers, that’s what they are there for. But there is also nothing wrong with educating yourself and knowing what test (or tests) to ask for to confirm your diagnoses. That’s why programs like Pack Health exist – it can be hard, but it’s also so important, to ask the right questions and take action for your health. Getting the proper diagnoses has changed my course of treatment and has changed how I feel. In fact, my most recent biopsy showed inactive UC (fingers crossed it lasts!).
If you haven’t had a Prometheus blood test or a biopsy, I recommend you ask for both. These diseases are complex, yet similar and different at the same time, and visual diagnosis alone may not always be enough.