So after feeling like I have been on an emotional roller coaster of uncertainty for the past few months I finally am feeling a little confident in understanding what is going on with my body and that I am now in good hands to work on treating it.
Basically I was fed up with the lack of communication on the part of my previous doctor. Prescribing medications without much explanation I felt so in the dark about what my results were showing that I knew I needed a second opinion.
Enter social media. I shared my last health blog update on my Facebook page with a call for help for GI doc recommendations and got a whole SLEW of answers. I am not one to share much on the FB unless it is running related but it was such a good decision.
And so it began that I was able to get an appointment within a week at a new doctor. The most challenging part was having my results faxed over - I had to call every day to the office to make sure that they were sending them.
Friday morning I had my appointment and not only was I seen on time, but they spent about 2 hours with me - from reviewing and writing up my entire history, to explaining the test results from all the blood work and procedures thus far to laying out a new plan of action for me.
They wanted ME to get it. Heck he started drawing diagrams at one point.
So basically yes, I definitely have IBD. He is mostly positive it is Crohn's but I also have a couple of symptoms that would point to Ulcerative Colitis - BUT the ulceration that I have is a definitive indicator of Crohn's which the several biopsies taken during my colonoscopy confirmed (seriously my doctor told me it was "inconclusive" and my new doctor read the results to me which said otherwise).
He wants to do an upper GI test though since that is where most of the damage is to see although he isn't pressing for me to get it immediately. Apparently the next one will be more fun because I get to swallow a capsule camera sounds like way more fun than a colonoscopy ;)
He also explained that my celiac test showed that I have one of the markers for it - I then let him know I had been gluten free for a few weeks when I took the test and asked if that could have skewed results; and he said absolutely so more labs are being done. Again previous doc said I came back totally negative. (I still refuse to believe I have celiac or sensitivity but who knows).
My first doctor had told me that I had low iron levels. Well apparently that is just the tip of the iceberg - basically I have NO ferritin. My level isn't low, it is non existent. Ferritin is the protein that stores iron, I am anemic but the lack of any in my blood panel is because of the ulcers in my gut as well as right now I am probably not really absorbing many nutrients in general. All ties in with the fatigue, dizziness etc etc that I am experiencing.
The good news in all of this is that the severity as to which I experience during my current flares is probably as bad as it will get. That was a great source of comfort. While it is definitely not a walk in the park to go through, I am hoping that we can get it into remission and under control quickly if it does flare up again.
I felt guilty going to another doctor for a second opinion because the first one was so NICE. But, at the end of the day if your gut (no pun intended) is telling you something is wrong, then trust it. I was kind of sitting there in shock as he went through my results and told me that basically I should have been diagnosed during the colonoscopy.
So continuing on anti inflammatories, which, have been starting to work so he didn't feel the need to switch, although he did take me off the second unnecessary medication. And besides that wait on the new lab results for now. I didn't want to be diagnosed with a chronic condition but I wish it had happened sooner versus a few years of uncertainty and hell just dealing with it. But, now I know and hopefully will feel normal (whatever that is because it has been so long since I have felt it) soon.
And feel brave enough to venture from the treadmill to the streets without being scared of what will happen. That, will be a victory.