New Beginnings #crohns #ibd #colitis

As much as I wanted things to work out in a natural way, they didn't.  Crohn's has returned with a vengeance ruining my Christmas vacation. Thank heaven for pain pills and sick time.

I love my doctor. He made a slight grimace when I told him I'd quit Humira, but he didn't throw it in my face. I made myself clear when I said that obviously, I am going to be a long term medication user. My immune system is on hyper-drive compared to most people. Wish I had the easy form of Crohn's, but no.... I gotta get the full hyperactive immune system in overdrive.

One thing Humira did was to slam me with headaches. Serious migraines that lasted for 5 days. As much as my butt hurts, I do not miss those headaches. And since the 6mp didn't work with my liver, I have no choice but the biologics and, err, Prednisone, which I start tonight. 

My doc wanted to try Cimzia first, but he didn't know when the rep would be back in the office, so it's off to the hospital for Remicade infusions as soon as they can get me in. I really pray this biologic doesn't give me headaches. I can take pain anywhere else, but in my head. For me, a headache is pure torture.

Remicade is a chimeric monoclonal antibody against tumour necrosis factor alpha used to treat autoimmune diseases. And from what my doc told me, they've been using it for years. Infliximab (Remicade) was approved by the U.S. Food and Drug Administration for the treatment of psoriasis, Crohn's disease, ankylosing  spondylitis, psoriatic arthritis, rheumatoid arthritis, and ulcerative colitis.

 It is delivered through an I.V. with two loading doses then once every 6-8 weeks. The hard part is you have to give up your time. (As if I don't give enough to this disease.) Treatment is done at the hospital and takes 1-3 hours depending on whom you talk to, and again depending on whom you talk to, treatment wipes you out for the rest of the day. You are given meds before beginning as some people are allergic to the drug. If you have a severe reaction you can kiss treatment good-bye. Otherwise, Remicade has the fastest symptom knocker-downer than any of the other medications.

It comes with the same risks as Humira, but at this point, it doesn't matter. Life cannot be lived like this for long. My hair is falling out which means no B vitamins are getting in. Being in chronic pain is not a fun way to live your life. On top of it, you imagine what is going on inside of you to cause that much pain.  It can't be pretty.

I have learned a lot through my experiment. I learned that to survive a flare go to liquids. I learned that the magic pill I need can't be found in alternative medicine. There are things you can take to make you feel better, but the bottom line is, there is no cure. And that sucks.

On another note, CMP has assigned me a new editor. She seems like a lovely woman and I'm looking forward to her comments on The Light and the Flame, book two in the Gemini series. Writing is a great way to distract myself from pain. I forget all about my troubles while creating a few for my characters.  I think I will blog my way through the editing process. It will be a great way for aspiring authors to see what the process is like.  I think I will use the blog to document my experience with Remicade as well, maybe there is someone out there I can help through my experience.

After all, isn't that what life is all about?

(((hugs)))

and a very happy new year to everyone.

Louann

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