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.)
Note: I was so honored to get the opportunity to write about my battle with Crohn’s Disease for one of my favorite websites, The Frisky. The article was published online in July. Read it here.
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.
0 Responses
My wife Was diagnosed about 6 months ago and was put on remicaid straight away. She has a moderate case and we are still going for infusions every 2 months. Im just curious if anyone has seen any side effects after getting pregnant, as we recently got pregnant with our second, and she is continuing to get the remicaid.
I’m 31 and was diagnosed with Crohn’s a week ago. This diagnosis comes after battling an extremely rare type of cancer for the past seven years (I’ve been in remission from that since late 2010). I gather that Crohn’s is something that’s primarily diagnosed in people much younger than me, so I keep hoping the doc got it wrong and I don’t really have it…but the genetic testing backs it up and the symptoms don’t lie. I currently have what is considered a “mild to moderate” case, and I’m so frightened of the future. I’m in my first year of college to become a nurse and I’m so afraid this disease is going to take away my dream, ruin my career before it begins. My current treatment is mesalamine (Lialda, 4 pills a day) and prednisone (for at least another month) to get the flare-up I’m in under control. My question is, what then? Will I always have to take meds for this, forever? Can diet really reverse the effects? Is it possible that I may be able to avoid becoming one of these horribly severe cases? I welcome any advice, I am so lost 🙁
Whoops, I put my email in wrong, if you reply, please reply to this last comment.
Ali,
Thank you for sharing your story! I too have Crohn’s disease-diagnosed at age 10. I feel like I was reading my own story while reading your blog. I’m also a marathon trainee-though I have yet to run one. Your story has really inspired me to push forward in my training and not be scared of my bathroom breaks! I live in a very rural area so..It can be a bit intimidating. I hope Remicade going well for you. I had to switch to Humira about a year ago. So far so good!!
Best of luck!
Jocelyn
Enjoyed your story. Diagnosed with Crohns in 2010. Severe allergic reaction to methotrexate, grew antibodies to humira and will start remicade on Friday. Your story helped me understand what to expect.
Thank You:)
I am also on Remicade, too. I have autoimmune arthritis and I found about my Ankylosing Spondylitis two years ago during my senior year in college and started Remicade treatments during that time. So, far the Remicade has made a difference, I feel better than I have in the past few years. The only complaint I have is that Remicade is very expensive. I also recieve Remicade infusions every eight weeks at my rheumatologist’s office. I hope that one day that a cure will be found for chronic illnesses. Now my biggest challenge is to look for a job. I really enjoy reading your blog. I used to run when I was in high school until my arthritis reared its ugly head.
You have an awesome blog! I love reading it! My brother has Crohn’s and was on Remicade. He is crazy active, and loves outdoor ed in school. I am always looking for ways to raise some money for Crohn’s research, but there aren’t a ton of options where I live. I am going to take part in a study on Crohn’s. It’s trying to figure out why some siblings have it and why others don’t! Anyways congrats on completing a marathon! That’s freakin awesome! I am training to complete my first Olympic distance triathlon this summer. I don’t know how you can run for soooo long! It’s also been great reading about NYC! My girlfriend and I will be visiting in 15 and a half days and were both uber excited! Sorry for leaving a rambling comment!
I am inspired by reading your blog. I have a neurological disorder, intracranial hypertension, also known as pseudotumor cerebri. Over the past year I have started running again despite extreme pain in my legs from the “brain pain” as I call it. Despite the pain, I keep running!
Thanks for sharing your story, Ali. I recently just posted on my blog about all of the stomach problems I have had my whole life (which are really similar to yours). I recently went to the doc and am getting a slew of unpleasant tests done soon. I hope they find out the underlying issue soon, because I have to hear “you have IBS” one more time I am going to freak out bc clearly it is NOT… My physician said I may have Crohn;s or Ulcerative Colitis. I have been hearing so much more about it and realizing how (scarily) common it is. You are brave for sharing your story and, for people like me, it is reassuring to know that you can still be active and not let the disease bring a sista down! 🙂 So thanks for the motivation and inspiration.
Felt like I could have written this myself. Again, brings back memories of all of my remicaide and iron infusions years ago. So sad that you are still going through this – I actually feel lucky to have only had UC and could essentially be “cured” by the surgery. But glad you found something that seems to be working!
I’m also on remicade too. Hate that it costs so much but what can you do. It helps me survive.
From what I’ve learned, crohns is highly genetic. In fact, they are studying crohn’s and genetics like crazy right now.
James,
Antibiotics may be linked to crohn’s, or possibly push someone predisposed to crohn’s over the edge. Makes sense if you think what antibiotics do to your gi tract. And I have talked to a lot of people whose acne is closely connected to their crohn’s flare ups. It seems like I read the reasoning for this once, but my brain doesn’t want to throw out the information right now 🙂
I too used Remicade for a little over a year then it was no longer effective. They then put me on Humira. This too worked for about a year. I now take nothing and have been fine. The weird thing is what my body is doing. I used to have really bad acne and all of my life i took some sort of acne medication. Mostly antibiotics! Before I came down with Crohn’s I had acne that was all over my back and face. Then one day it all went away. GONE. I felt cured of acne, but then….well you know how it went. I was so sick the doctor said it was the worst case he has ever diagnosed. I was sick for months. Even through treatment with the Remicade and Humira I would have mini flare ups. After the last flare up I decided I might try stopping everything. Well… the Crohn’s feels like it’s gone. The acne is back however. I’m not talking pimples, more like boils. The funny thing is when I was on Remicade and Humira and the Crohn’s was active I would catch any cold I was around and had multiple sinus infections. Now with no medication I have been in a house with my wife and two children have been sick twice now and I got nothing. It’s like my immune system is on overdrive. There has to be some correlation between acne and Crohn’s. Or maybe something between antibiotics and Crohn’s. I would really like to find out. I am glad I could share this. I do not recomend quitting any medication, for some reason it just worked in my case. I just had to try. Let me know what you think. Are there currently any studies you know of?
Were you on Accutane? I took Accutane twice in my life, my first round of beng on it is when I was diagnosed with Crohn’s in 2004, although I truly know I’ve had it at least 8 years prior to taking the Accutance, it just went undiagnosed. The second round, I had no complications but it is something I had heard before. After that, I was flare free for nearly 7 years. Them I got supe sick and underwent Remicade in 2011. It has completely ruined my health and life! I would love to find a side effects about Remicade study.
I only had 4 Remicade infusions and then quit, despite the disagreement of my doctors. I didn’t like the idea of being on something so serious.
Were you on Accutane? I took Accutane twice in my life, my first round of beng on it is when I was diagnosed with Crohn’s in 2004, although I truly know I’ve had it at least 8 years prior to taking the Accutance, it just went undiagnosed. The second round, I had no complications but it is something I had heard before. After that, I was flare free for nearly 7 years. Them I got supe sick and underwent Remicade in 2011. It has completely ruined my health and life! I would love to find a side effects about Remicade study. I only went through 4 infusions and quit despite the reluctance of my doctors.
Ali,
What is your email address? I want to invite you to the NYC blogger brunch on 11/21!!
I am so intrigued! Thanks for all the information!
Have a blast in Mexico!
a boss i had once suffered from the disease. he also wrote a book or maybe it was a documentary? i cant remember?
hahaha i say yall too!
a friend of mine from high school also has crohn’s. i never fully understood what was going on, i just knew she was constantly in and out of hospitals and had to get numerous surgeries. like you, she’s got a pretty good idea now of what medicines work and don’t work and she knows who all the good doctors and nurses are.
no worries if you can’t update while you are on vacation. after all, it is supposed to be a vacation. have fun!