Monday, February 1, 2010

A day in the life....

Alrighty, so here is a day in the life of a Crohn's Patient. Today is my Remicade infusion, so let's get this party started.

8am - Rise and shine. My alarm was set for 8:30 but my dear Basset Hound Watson starts whining a little before 8am. Even though my wonderful husband gets up with them, I can't get back to sleep. I have a couple of things to do this morning before I leave for my appointment. I always pack a bag of stuff to take with me since I will be sitting in the same place for three hours. Mostly it is filled with magazines and books, some DVD's to play on my computer, my ipod (which i will probably never put on), and lots of (healthy) snacks.

9:50 - I arrive at my GI Doctor’s office. There is one room for all the Remicade patients, and one nurse, Nurse E, who takes care of us all. We can only schedule infusions on Mondays, Wednesdays, and Fridays. So depending on the day I can be waiting out in the lobby for quite a while. Today it wasn’t so bad..

10:00- Nurse E comes out to get me. She is one of the nicest people I know. She always has a smile for everyone and asks me what’s going on in my life. She actually knows more about our fertility treatment issues than most of my friends. As soon as I walk in she gives me the look and says “any news?” I fill her in on the tube and ovary issues as we get my weight, blood pressure and all that fun stuff.

10:15 - The real fun begins. Time to place my IV. I have horrid veins. They are tiny and extra delicate. Nurse E calls me her problem child. So she gave it one shot on my left hand and it infiltrated right off the bat. Basically what happens when a vein infiltrates is it tears and the fluid starts filling up under the skin instead of going into your veins. I can see right away the back of my hand starting to puff up, I will most likely have wicked bruise later. Nurse E decides not to torture me and went to get the nurse that specializes in children’s veins. So we finally got it on the second try in my right hand. My record is four tries to get a good vein. That was not a good day. Now it is just a matter of sitting here and waiting for the drugs to drip into my body.

10:30 - Nurse E fills a huge syringe with the actual remicade, dose of which depends on the weight of the patient. I am not actually sure what my dosage is. She injects the Remicade right into the IV bag, and we are off. Now it is gossip time! I am usually with the same two ladies while getting my remicade, I have no clue what their names are, but they are both very nice. The conversation usually centers around our various stomach issues. Today we start off talking about my fertility treatments because one of the ladies overheard Nurse E and I talking.

11:15 - The conversation turns to our stomach issues as it always does. Since going on remicade two years ago I have been in remission for the most part. I get little tiny flares sometimes when I go overboard on fiber or really acidic foods. This poor girl who is always in at the same time as me is still having lots of diarrhea issues. Most Remicade patients get infusions every 8 weeks. She is coming every 4 weeks to try and get her symptoms under control. Technically she is in remission for the Crohn’s but now they thing she may have Irritable Bowel as well. Oy, that must suck!

11:45 - Time to turn up the meds again and get vitals again. They check blood pressure temp and heart rate once every hour to make sure you don’t have a reaction to the drugs. They also start the IV off at a very low drip and gradually work up. They do this because if they just put it wide open from the get-go than the patient would almost certainly have an allergic reaction. Some people still get the allergic reaction even with the slow build-up, these people usually get benadryl as soon as they come in and then sleep through the infusion.

12:35 - I am bored. I have read all my magazines, the other patient is asleep, Nurse E is dealing with a problem patient and her problem insurance. I have played a couple rounds of solitaire. The good news is I am now in the home stretch. My IV is wide open and the bag only has about a half hour to go.

So this was a morning in the life of a remicade patient. After my IV bag is empty I will go home and take a nap. It may sound weird but these infusions always take it out of me. Getting such high doses of medication forced into your body is exhausting. But it keeps me out of the hospital and not running for the bathroom every five minutes, so I will continue to do this every eight weeks for the rest of my life.


  1. Wow. I had no idea how much you go through. I'm so glad its working for you, but it must be so hard knowing you'll have to do it for the rest of your life. You are my hero.

  2. I'll bet at some point, they'll discover a new method of treatment that won't be so taxing. My mom used to take osteoporosis meds every day, and now just once a month. I even heard there's a new shot that you only have to take once a year.

    Point is, maybe it'll get easier at some point :)

  3. Hey, I just sent you a PM on the bump.

  4. I follow your blog from the bump, but I just now realized you have Crohn's. I have ulcerative colitis which is very similar to Crohn's. I have been on steroids, 6-mp, and mesalime for a couple of years now. It is awful. I just finished reading the book 'Breaking the Viscious Cycle' Its about healing your stomach through diet and many people with Crohn's, UC, IBS, IBD, and other issues have found relief. I have tried to start the diet but it is very difficult and you need a lot of will power to follow.