Monday, March 30, 2009

Crohn's Casts - Take a Listen

Well, it has been 10 days since the first Remicade treatment, everything is going great. From reading other testimonials, I was expecting to be extra fatigued and achy the few days after, but no such thing. I am still not sleeping (thank you prednisone) but my house is incredibly clean, I have documented every book I own, I am caught up on all my filing, sorted through all my quilting fabric- you know what it's like! You make up stuff to do at 3:30am! Everyone handles medicine differently...

On Wednesday into Thursday evening I did have a bit of a scare. This sounds funny to say out loud, but not so funny at the time- my skin was painful! Has anyone else had this happen to them? It hurt to touch my entire upper body. As if I had bruises all over my chest, arms, abdomen and back. It hurt to wear clothes, hurt to move. My skin was incredibly sensitive. Doctor's visit on Friday- thought I had shingles (viral infection of the nerve roots, pops up when immunity is low)! Follow up with doctor, no shingles, phew! So far we do not think this was a reaction to the drug, just more inflammation. ..

Note: It is not uncommon for individuals on Remicade to develop shingles- check out this article and supporting research.

Crohn's Casts

For those who have not found these yet, these are especially good for the newly diagnosed or friends and family who want to better understand the disease:


I found these very well done, hitting topics that are very relevant and important to consider for an individual living with Crohn's. Turn up the volume! Bottom line: Be mindful of what you put in your body...

Saturday, March 21, 2009

Remicade, Treatment 1

Not so bad! Arrived at 9:30 am and was done by 1:00pm. I guess the first treatment takes the longest...

Because Remicade is so expensive, the drug is not mixed until you arrive on the premises of the doctors' office. After Laryl, the fabulous nurse practitioner, set me up in one of the exam rooms (although you may have an entire Infusion Room available to you at your local hospital), she took my vitals (ie weight, temperature, blood pressure) and determined my treatment dose based on my weight.

She began the IV with a simple saline solution, began a VERY slow drip, and added the Remicade to the solution. Over the course of 2 hours, Lauryl checked on me repeatedly, monitored me for any allergic reaction, took my vitals and over time she increased the rate of my drip once she knew my body was doing well with it. Phew! A big thank you to Dr. Barry Ross and Lauryl for making this first infusion as painless as possible! It helps so much to be surrounded by kind, competent and passionate professionals...

How can you prepare for this infusion?

1. Eat before you go. You don't want to be uncomfortably hungry during the infusion.

2. Pack a bag of fun! You will be there for 2-3 hours or so, bring things to entertain yourself. Book, cards, Nintendo DS, DVD player, magazine, etc. OR prepare for a nap! This can be much wanted relaxation and meditation time. A travel pillow and blanket can make this a much cozier experience.

3. If you are on prednisone, I recomend bringing a snack! That can be a long time without food for those of us on steroids! I know I get ravenous!

4. Go to the bathroom before you begin but yes, you can use the bathroom during the infusion, you can roll right on in there. No worries. Just don't get tangled on your IV:)

Back up...What is Remicade?

Crohn's Disease is an autoimmune disorder. Our own body attacks our healthy tissue causing inflammation, particularly in our small intestines. Remicade is a biologic medication used to treat the inflammation before it occurs by blocking the actions of TNF alpha, a naturally occuring substance in our bodies (WebMD, 09). Many of the drugs we are familiar with when it comes to Crohn's actually treat the inflammation when it shows up. Remicade binds to the TNF alpha, preventing it from signaling cells to attack healthy tissue, before inflammation.

I chose to try this treatment because the typical pills and surgery just haven't worked for me. Like any drug, there are potential side effects, serious and sometimes fatal infections, so it is very important that you collect all of your information and ask lots of questions before making treatment choices.


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Thursday, March 19, 2009

Reasons to smile...


Tomorrow I start Remicade and in anticipation I am a little jittery...so it helped to flip through colorful photos and look at people I love. 10.4.08 A lovely day surrounded by family and friends... This is what living is about. Really living. It's about love.

(photos taken by Anita Bage)

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