This week is Invisible Illness Awareness week. IBD is considered to be an invisible illness. There are a few minor things that others are able to see when it comes to Crohn’s and UC. One of these is Prednisone moonface.
Most everyone who has had to take the dreaded drug knows what I’m talking about. For those select few who don’t experience moonface, I envy you. I can remember my first bout with Prednisone back in 2011. About a week after I started taking the drug, I found myself looking in the mirror with a slightly noticeable puffy face.
Knowing that this was not the way I normally looked, I Googled Prednisone side-effects. Sure enough, moonface was at the top of the list.
And it didn’t stop there. Not only did my face swell, but so did the rest of me. Joints and all. I started getting joint aches, acne, massive food cravings, dentin hypersensitivity (tooth sensitivity), hair loss, etc., etc. And the list goes on and on.
I became steroid dependent. I could not get past 10mg of Prednisone before being sent back into a raging flareup. After a year of this roller coaster ride, I had had enough. On April 15th, 2014 I had my colon removed and was given a temporary ileostomy.
On May 25 of 2014, I took my last dose of Prednisone. And then I BURNED those cursed pills (For a video of this, click here!). I have been off of it now for a little over 3 months and I have vowed to NEVER go back. I actually told my husband I’d rather die than take Prednisone again… that may sound extreme, but I’m sure if you’ve ever had to take them, you’d say the same thing. My face has finally “deflated,” my joint pain is slowly going away and I feel better in general.
I was cleaning out my kitchen drawer the other day and found about 4 more bottles of Prednisone. I think another pill burning is in order (I’ll keep ya posted on that!). On July 15th, I had my takedown or reversal. Surgery was not a fun or easy decision. Not everyone has good/successful results, but so far, I’m so glad I had it done. I know I’m not 100% up to par, but I feel much better than I have in a long time.
Invisible Illness is a real thing. Please talk to your family and friends about Crohn’s and Ulcerative Colitis. Join a support group. Start a blog. You do not have to suffer in silence. And you definitely don’t have to suffer alone. Take care and God Bless!!!