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 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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Monday, March 16, 2009

Super Fast Digestive Tract!

I have found that my commitment to my disease is cyclical. When I got diagnosed I read everything, did everything I could...and then over time, it just became an inconvenient disease that took away my activities and landed me in the loo. And then it comes back to haunt you if you have not been carefully monitoring your system or perhaps, like in my case, you attempt to go off all of your meds (for personal or financial reasons) and then it bites you in the bum.

So, all of the sudden I am 25 yrs old, want a family, and should not even be attempting to get pregnant because I have active Crohn's and it is spiraling out of control. So I am back in the game! My GI says to me "You know you have to go back on medicine, right?" And I just tear up... I loved removing those toxins from my body. But it will not do me or my future babies any good to start off in the heat of the flareup. You start collecting more information, being open-minded about alternative treatments and start putting your trust back in your doctors. Back to Step 1.

Step 1:

Admit there is something wrong with your digestive system and make a significant effort to determine what is going on so that you can move on with your life.
If it helps- visualize!

Sad, ulcerated small bowel: Now you know why it hurts!

Happy, healthy duodenum
Step 2:
Seek out the advice and consultation of experts. This step involves a number of invasive and horrific tasting tests. (But nothing a little flavor pack can't help:)

Step 3:
Play around with (in a safe and controlled environment) all the possible options to heal you.
What do these tests include? If you are new to Crohn's Disease, chances are you have a scheduled appointment for one of these tests just around the corner, or you just went through a slew of them! If you are old school Crohn's, you already know all this. Here are a few of the tests most commonly used to diagnose and monitor Crohn's Disease (from the perspective of a recent patient). If you have any thoughts or feedback on these tests or your own experiences, please share!
1. Blood tests: to search for elevated white cells which could mean infection/inflammation OR to search for decreased red cells which often means anemia; in addition, blood tests can helf identify nutritional deficiencies (ie. calcium, D, B12, etc.) A good blood witch can make all the difference!
2. Barium X-rays: the upper GI series includes drinking a chalky white barium shake, hopping up on the x-ray table and taking a series of x-ray shots as the liquid travels down from the stomach and into the small intestines. As explained by the technician on my last visit, most people take 1 photo every 30 minutes or so, as the liquid slowly progresses in your system and the tests lasts 2-3 hours. Superfast digestive tract- I was up on that table every 8 minutes!!! Done in 40 minutes! Phew! Warn them if you are fast or they might miss it and you will have to start over!!! Ewwwwwww...
Barium x-rays may also be administered through a barium enema, in which the doctor is looking for pictures of the colon, terminal illeum, etc.
What are they looking for? Ulcerations, fistulae, narrowing of the bowel, you know anything that isn't perfect, pink healthy tissue!
3. Colonoscopy (and/or Endoscopy): You prep the day before by drinking what you can only imagine as the worst jug of crap you will ever have to drink, although it is deceiving and looks like water. I believe it is 4 L total. Pat yourself on the back if you can get through 50%! Then you spend time on the toilet, catching up on your reading. The next morning you are admitted to the hospital and are sent to dreamland. The actual procedure is painless, done before you know it! Sometimes you will be groggy, slow-moving, but that is simply from being put to sleep. If you have an endoscopy, your throat may be a bit sensitive when you wake up.
What are they looking for? ulcers, areas of inflammation, questionable tissue to biopsy
Flexible viewing tubes allow digital video and photography to capture your insides at their best and worst. This procedure allows for a more detailed look, grabbing biopsies, and identifying the true degree of the disease. Note: Bring a friend- the doctor will follow up with you after the procedure and I guarantee you will not remember anything he/she says to you!
4. CT Scans:
x-ray technique where you drink chalky barium substance again, lay down on a cold, hard surface and pass through a tube-like entrance, holding your breath whenever the technicians tell you to.
What are they looking for? A full view of the entire abdomen and pelvis.
To read more about these tests and why they are performed, check this Medicinenet article out.