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My Life With Crohn’s Disease
Every eight weeks, on a Wednesday morning, I go to St. Luke’s—Roosevelt Hospital in NYC to receive a Remicade infusion. The IV keeps my Crohn’s Disease at bay. Today was one of those Wednesdays. So I’ll start at the beginning to fill y’all in. (Y’all? That was weird.)
I was diagnosed with Crohn’s Disease when I was 7 years old, so it’s something I’ve had my entire life. Crohn’s Disease is marked by severe stomach cramping, bloody diarrhea and the inability to properly digest food. So it’s both convenient and sexy. [Insert well-intentioned sarcasm here.]
Though my case is more or less under control today, there have been plenty of ups and downs over the years.
On the day to day, I feel fine. There are certain foods I avoid (friend chicken, oh vomit) but since I’m generally conscious of what I put in my body anyway, I tend to feel OK with almost any kind of non-fried food.
When I do get super-sick, the doctors refer to it as a flare-up. Though doctors don’t know what causes Crohn’s or what the best way is to treat it, they have speculated that the flare-ups are brought on by stress. (My mom swears that’s true, too, and I kind of believe her.)
Over the years, my flare-ups occurred during the following times, to name a few:
- When I first went away to college
- When I left school in Connecticut to study abroad in Australia for four months (incredible, even despite the sickness that got me down for the first two months)
- When I landed my first job out of college
- Right after I got promoted at work and took on a new, huge workload
So maybe the doctors (and my mom) are right after all. Stress gets me down, man.
One treatment that has worked particularly well for me in recent years is receiving this Remicade infusion. The drug helps put Crohn’s into remission and relieves symptoms by binding and blocking the effects of TNF-alpha, a protein involved in the inflammation process (so science-y, I know).
The first time I got Remicade was at Dartmouth Hospital in New Hampshire. I was a senior in college and I was terrified. My dad (famous in the family for his innate ability to pass out as if on cue when he enters a medical examination room) took me and we were taken to a big infusion suite filled with reclining chairs and sick people. I was crushed. Everyone in there looked sick and I had a hard time thinking of myself as in that same classification.
The doctor tried inserting the IV in my hand. It didn’t work. I screamed and cried. Then they tried again. It still wouldn’t go in. I was so dehydrated from being sick that my veins wouldn’t cooperate. Not a good way to get started…
But now, my wonderful IV nurse (Hi, Gina!) and I have the process down to a science. Here’s how Remicade Day, as I call it, usually goes:
- I arrive at the hospital by 8:20 am.
- I get checked in am taken to the Vital Signs room, where they take my blood pressure, temperature and weight.
- Next, I’m taken to a holding room where I wait for Gina to come get me. I used to have a different nurse every time, but since I would always get fainty and dizzy when I saw the needle, Gina took over as my regular. She’s so sweet and takes wonderful care of me.
Here’s a view of the Infusion Suite:
- I like the corner seat, away from the drafty window.
- The room is filled with reclining chairs, all of which have TVs. We also get spoiled with lots of pillows, blankets and snacks.
- Then comes the least-fun part: Inserting the IV. I used to be TERRIBLE at this. Physically, my veins would collapse and mentally I’d go nuts and come super-close to passing out almost every time. But now that I’m staying hydrated all the time, Gina and I are pros.
- Once the IV is in, I take some Benadryl and Tylenol. I love the Benadryl because it knocks me out!
- The entire infusion takes about 3 hours. It’s nice to sleep for some of it. I also read, watch some TV—and enjoy visitors!
Overall, the Remicade process isn’t a bad one. I had a hard time adjusting to it because I dislike needles and don’t like hospitals in general. But now I’m comfortable and I don’t freak out about it anymore.
In fact, when the process was over today (I took a vacation day to prepare for my actual vacation, hehe) I went to the gym for a Cardio Tai Boxing class, then went for a 7-mile run! I felt great. I used to be groggy all day afterward but now I’m good to go. Thank you, body recovery!
So that’s the deal with Remicade. Any questions?
I’ll be going again in January and there’s no “end date” to my treatment. The doctor has me going every 8 weeks indefinitely in addition to taking a daily dose of 6 mp. I hate taking it every single day, but if that’s what it takes to be comfortable, I’ll suck it up.
Chances are you know someone with Crohn’s Disease or its “sister disease” Ulcerative Colitis. They are both conditions relating to IBD (Irritable Bowel Disease), which affects more than 1.4 million Americans. Crazy, right?
The frustrating thing is that there’s no cure. That’s why I was so proud to join Team Challenge, a 1/2 Marathon training program that raises money for the Crohn’s & Colitis Foundation of America. It’s an incredible program and I highly recommend it.
Fun (?) Fact: My brother has Crohn’s Disease, too. Doctors say it’s not hereditary, but it is common among siblings. Guess we’re two of the lucky ones!
So that’s it for my Crohnsy talk today. I’ve had a productive evening of cleaning, laundry-ing and packing. ABS and I are getting picked up at 5 am for our super-early flight out of Newark tomorrow. Then it’s off to sunny (I hope) Mexico for his friend’s destination wedding!
I’m planning to bring my laptop and will hopefully be able to post some pretty pictures while I’m away. In case I can’t update, I’ll chat with y’all (there it is again, that weird y’all…) when I return on Sunday evening.
I WANT TO KNOW: Do you or someone you know have Crohn’s Disease or Ulcerative Colitis? I’d love to hear your story.
Posted in Crohn's disease, Gym Classes, Running, Team Challenge, Travel, Workouts and tagged Australia, Cardio Tai Boxing, Crohn's and Colitis Foundation of America, Crohn's Disease, Destination Wedding, Mexico, Remicade, St. Luke's Roosevelt Hospital, Studying Abroad, Team Challenge, Travel, Vacation-