Yesterday I found myself sitting in the University of Maryland digestive health centers infusion room, occupying the same chair I sat in every time I received Remicade. However, this time I was undergoing an ACTH stimulation test. Earlier in the week I received a phone call from my GI doctor saying they wanted to "touch base with me". Now, because of the fact my next appointment isn't until August and I have been feeling fantastic, I knew something had to be wrong. After calling back, I learned that the results of my last blood work showed a deficiency in cortisol. Therefore I needed to come in soon and have the ACTH test done to assess the functionality of my adrenal glands.
I will try to explain this as easily as possible, and note that I myself am new to this, and I am not a doctor, so I could have things mixed up. Basically your adrenal glands are responsible for releasing cortisol. Cortisol is a steroid hormone and if you don't have enough of it you can feel like crap. The extent to which cortisol can affect ones well being is massive. It can affect your sleep habits, blood pressure, immune response, metabolism, mood, and the list goes on. Bottom line is, you don't want to have a problem with your cortisol levels or your adrenal glands.
After talking with the nurse practitioner who administered my test, I came to understand that there is indeed a connection between my past use of Prednisone (the steroid of Crohns patients) and this deficiency. In short, while I tapered off steroids after my last year-long stint, my body never adjusted to this change. It had gotten so used to the amount I was taking in medicine every day that it slowed down its own production and never compensated once I came off steroids.
While my possible adrenal issues are not to be taken lightly, I know that it is a treatable ailment. I also know that I don't feel like shit so it hasn't been too much of an emotional set back for me. It is just frightening to think about all of the long-term health problems that result from steroid use, which is such a form of relief that Crohn's patients so often turn to because they just want their life back, myself included. But it also makes me feel a little bit better about how long I resisted steroids after my last flare up even when doctors were pressuring me to take them. There are just so many complications that arise from steroid use that do not get discussed openly when doctors place you on them.
For now I have to wait for the results of the test and if there is some kind of functionality issue I will have to see an endocrinologist. I am really curious about this Crohn's and adrenal connection because I couldn't find too much about it online, although I have been assured that it is a fairly common issue for people who have been treated with high doses of Prednisone.
Anyway, just a small update. Today I will be making S'mores bars, a flag composed of jello, red white and blue cheesecake, and orzo pasta salad. This is all in preparation for my sisters July 3rd Independence Day party and I can not wait.
Hope everyone's 4th is filled with good food, drinks, family, and friends.