Crohn's Awareness Week #crohnsawarenessweek #ibd #crohns #uc

_The word of the week is AWARENESS, just in time for #IBDAwarenessWeek 2014! There are now 1.6 MILLION Americans suffering from these diseases and we need your help. Support our Awareness Week efforts and supporters Great Cookie and Bertucci’s, who are donating a portion of sales to fund IBD research. ALSO this week, sign up for our webcast on IBD diagnostic tests. READ the full round up of our Awareness Week festivities here!

I thought the blog I had prepared for this week's festivities was going to be filled with good cheer and laughter, happy Remicade was keeping me healthy and it was, at least until I woke up Monday morning.

On Monday, the little itchy no bigger than a quarter spot I'd had since my last infusion that I didn't worry about so there Crohn's had grown into a fist sized very uncomfortable rash. Like the good girl I am, I reported it to my GI's nurse who gave the doc the message. He said no way could it be Remicade related. That came eight hours after I'd called.

By yesterday morning the rash had exploded down both legs and was reaching upward in a bid to conquer the rest of my body. I wasn't waiting all day for a call back from my GI doc, so I called my regular doc who saw me within twenty minutes. She'd never seen anything like the rash from hell before so she called in the big doc who looked at it, poked it... At which point I advised her that if that rash was on her, I wouldn't be touching it.

I am known as the "Put the Fire Out One at a Time" patient in their office so she recognized me right away. She smiled up at me, her beautiful brown eyes conveying sympathy, and said, "It isn't catchy, it's Eczema."

I shortly thereafter learned that eczema is a general term for any superficial inflammatory process involving the epidermis marked by redness, itching, minute papules and vesicles, weeping, oozing, and crusting, and later by scaling, lichenification and often pigmentation.

Aha! I got the pigmentation thing. The little spot that started it all was gray and really creepy looking. I couldn't help but wonder if I was turning into the Walking Dead. Shortly thereafter, I was given an injection, though I can't for the life of me remember what it was. I just know it was a steroid of some sort along with some antihistamine stuff that I can't remember either. After adding Benadryl to the mix I was one sleepy female.

My regular doc is not a big fan of Remicade, she told me to march over to my GI's office and show him the rash. Although to be fair, it's not really a rash, it's like the skin was scalded with little pus pockets every which a way. Ewe. In any case, I did march over to his office where his receptionist took the message and I still have yet to hear from him twenty-four hours later. Go figure. This from the man who was adamant I call him immediately if anything suspicious came up.

Eczema is a side effect of Remicade. It happens to about 1% of people infused and my regular doc is sure it is Remicade induced because I've never had Ezcema before and people with Eczema generally get it when they are infants and it becomes a life-long condition.

Well, I'm no infant.

But I have a plan. If I don't hear back from my GI I will go ahead with my next infusion  taking extra special care of my skin. I went out and  bought all the natural creams I could find. My next infusion date is the 29th.  I always feel sick for 4 days afterwards so this is thankfully after the Christmas holidays.

I just can't give up yet. Remicade is the only drug that brought me out of the abyss, that deep dark place where you live with pain and exhaustion every single day of your life. I don't want to go back there. No, not yet.