Remicade, Treatment 3

Wordles: A Way to Cope

Sometimes you just need a new way to cope...and a wordle is a terrific way to express yourself. Above is my sad wordle. This is how I feel when I am inflammed and depressed- warm colors, everything all over the place! When I am in this state of mind I can only focus on the challenges of getting through the day. In the last few days, this wordle describes me...

On Friday, May 1st, I went in for my 3rd Remicade infusion. It started just fine, but 30 minutes in, it got interesting! It was then I began to fully appreciate the slow drip. Because my mom had an allergic reaction to Remicade in the past, I have always been a little weary. So, for the first 4 infusions I wanted to have someone with me. I am grateful my sister-in-law Vicki came with me this time around.

So there we are chatting about Grey's Anatomy and Private Practice (by the way, unbelieveable Private Practice finale!!!!) and my chest begins to tighten, it's getting more difficult to breathe and I can feel intense heat rising...I felt like my body was a thermometer. That is when we called in Laryl, RNP, and she immediately stopped the drip and made me lie down. Apparently I looked like a talking red beet. Now I know what a hot flash feels like and I do not envy my mom and mom's in law!

After waiting 30 more minutes and flushing my system with saline, we started that Remicade back up. Try try try again! Vicki taught me the card game "Spit" and despite what my husband says, she does not cheat:) So there we are having a lovely time, playing one hand spit. That's when it happens- I get the ITCHIEST palms I have ever had! If Vicki would have left me alone I probably would have rubbed my hands raw. Come back Laryl! And then the bottoms of my feet began to itch...red, raw, and I could not stop scratchin'...

The bottom line- after painful skin, excrutiating joint pain, hot flashes and intensely itchy hands and feet- my docs put a stop to my Remicade treatments. Oh Dear. Where are my sweatpants?

On to Humira

Apparently, my body can not tolerate the mouse protein found in Remicade. Pretty depressing, I had high hopes for Remicade. Now, we have a new plan and we are going to try another biologic medication called Humira. This drug is also a TNF blocker, but it is administered by giving yourself an injection under the skin.

My sanity is being tested. I really just want something to work! But I am going to breathe and focus on what my happy wordle looks like instead. The cool colors, the organization. I am lucky in so many other ways. This disease will not rule.

A big thank you to my husband- for sitting through the first two infusions and keeping me laughing at all times- and to both Vicki and Laryl- for getting me through these allergic reactions!

To create your own Wordle- check out http://www.wordle.net/
Hope you have a great day!

Remicade, Treatment 2

HAPPY EASTER!

It wouldn't be Easter if I didn't blow up a Peep in the microwave! And let me tell you, trying to capture it on camera was no easy feat before it deflated!

So, last Friday, April 3rd, I went in for my second Remicade treatment. It took about 3 hours. Same slow drip to begin that speeds up over time. It was uneventful, yay; no allergic reaction (and I hear that usually treatments 2 and 3 are when you would react: fever, can't breathe, break out in hives, etc.). My husband came with me and destroyed me in rummy...

The real excitement happened 5 days later. Around 3am on Tuesday evening I woke up in horrible pain- the muscles and joints in my legs were on fire, as if someone were constricting my legs until I could not breathe. The intense pain only lasted an hour. Through Wednesday, the aches and pain traveled throughout my body. When I woke up, my lower jaw hurt (could not chew or open my mouth), my wrists hurt (as if I had done hundreds of back handsprings, yes, I was a gymnast), and my knees still had remnant of the pain the night before. I felt very shaky throughout the day, very weak and achy. This was not a "I worked out and my muscles hurt" kinda achy- it was "a bus slammed into me" kinda achy. The pain got progressively better throughout the day, completely gone in 24 hours.

Last night, unfortunately, the terrible leg pain started back up, just in my right leg, and lasted only an hour and a half. Elevation and anti-inflammatory helped a great deal. BUT cutest thing ever, bright light in a very dark moment...my mini schnauzer, Finnegan, knew my legs hurt. She knew I was uncomfortable. While I was trying to breathe and find a level of control and meditation, Finnegan went under the blankets and layed across my legs! She put her cute little head right on my knee and fell asleep. I am grateful for my furry angel.

Question: Has anyone found anything to counteract these aches? Any nutritional or herbal supplement perhaps?

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:

Crohn's Disease Webcasts

Crohn's Casts: Speaking from the Gut

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...

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.

My Story

"Excuse me, can you tell me where the bathroom is?"


"Are you pregnant?" "Nope, just bloated because of mass quantities of steroids, but thanks for asking!"


"Any accidents?" "Any urgency?"

I hope you have not lost your sense of humor. Chances are if you are in remission, you can smile at these questions. And if you are in the middle of a flare-up, you are just groaning ...


Welcome to my life. I am 25 years old and living with Crohn's Disease. As I search online for enlightenment concerning this disease, I am aware that not enough people talk about it! I want to hear your story, I want to learn from you and your experiences. I want you to learn from mine. It also makes it easier living with this disease when you know someone else has also raced to the bathroom or driven white-knuckled all the way home. Of course, our disease is unique to each individual. That's what makes it such an adventure!


Luckier than most, I have an incredible family support system that begins with my mom. She has suffered with Crohn's Disease since age 20. I know she feels bad that genetically she passed on this disease to me, but I don't feel bad. She gave me the best genes she had plus Crohn's. It could be a lot worse. In addition, my husband is amazing. We actually wonder if any other couples talk about bowel movements as much as we do. It is typical of him to point out bathrooms in restaurants and loyally follow me into every health food stores we see. We have been together for 6 years and he has done as much research on Crohn's as I have. He doesn't grumble about our very typical and unflavorful meals and for that I am very thankful.


I was diagnosed at age 17, after a rocky soccer season composed of "run, sprint, dribble, race to the bathroom, get back on the field, run, sprint, defend the goal, race to the bathroom." I didn't eat lunch so that I could participate in soccer practice. My pediatrician did not believe I could have IBS and/or Crohn's so my mom took it into her own hands, bringing me to her GI doctor. And you know the outcome. Cobblestoning anyone?


I have never reacted well to drugs and since being diagnosed in 2001, I have never been in remission. At different points in my life I have tried Pentasa, Imuran, Prednisone, Entocort, Cholestyramine, Lialda, Prilosec, and Cipro just to name a few. In 2004, after extreme abdominal pain I ended up with emergency surgery and a small bowel resection. Goodbye 12 inches of diseased intestine...take the appendix with you! Oh, and don't forget part of the cecum. Fortunately, surgery opened my very narrow small bowel back up, unfortunately, it did not help control the Crohn's.


Fast forward- For the past 6 months I have had incredibly active Crohn's. I finished graduate school, got married, got a real job and with all that positive and negative stress I found "normal" to mean trips to the loo about 10 times a day. Isn't that normal? With a 5'0" frame, dropping 20 pounds seems like a lot...


This Friday, March 20th, I will begin my first Remicade treatment. After careful consideration of my options, I would like to be more aggressive about my treatment. Since very little exists as to patient testimonials and experiences with Remicade, I would like to use this blog as a way to share my story.

For those you living with Crohn's Disease or supporting somone who does, you are in my thoughts and prayers. I applaud you and hope you are doing well managing your sense of humor, your optimism and your sweatpants:)