Happy World IBD Day!
If you’re new to my blog, you might not realize I have Crohn’s Disease. Crohn’s is one of two types of IBDs (Inflammatory Bowel Disease). The other is Ulcerative Colitis, which my mother-in-law has.
I was diagnosed with Crohn’s when I was 8. I have yet to meet anyone diagnosed as young as I was.
I’ve had my ups and downs with the disease over the years, including dropping to 77 pounds when I was 15 and spending a few days in the hospital in January 2010. Lately, my Crohn’s has been more down than up.
Last week I had my colonoscopy and my MRE (Magnetic Resonance Enterography) to figure out why I’ve struggled with weight loss and suffered so much abdominal pain over the last nine months or so.
I have to be honest. While I won’t know the full results until my follow-up appointment this Friday, the initial results were bad.
My intestine was red and inflamed. While my gastroenterologist described my Crohn’s as only “moderate,” his initial suggestion for new treatment is usually reserved for severe cases.
While I plan on discussing other medical alternatives on Friday, I will most likely need to choose between Humira and Remicaid. Taking Humira would involve giving myself painful injections every two weeks. The upside would be the freedom to take the drugs at home. Taking Remicaid would involve going to the hospital every six weeks to spend a few hours hooked up to an IV for an infusion.
I’m not exactly thrilled by either option.
Of course, one of the medical alternatives I plan on discussing could prove interesting. Georgia recently passed a law permitting the use of cannabis oil for certain medical conditions, including Crohn’s Disease. While some studies suggest it might help with the inflammation itself, at the very least it could help with my stomach discomfort and low appetite.
Regardless of what treatments I end up taking right now, Crohn’s is a lifelong journey. Both Crohn’s and Colitis are incurable diseases, but most of us can manage them with medication.
For this year’s World IBD Day, I ask you to have a bit more patience and kindness for the people in your life suffering from IBD. No, we’re being boring or anti-social when we say we’re too tired to go out. No, we’re not lying when we say we’re in pain and can’t help with chores. You might not like sitting at the restaurant table alone for 15 minutes while our bowels explode in the public restroom, but trust me, it’s worse for us.
Please remember that just because we “don’t look sick” nor do we complain constantly about discomfort or pain, that doesn’t mean we use Crohn’s as a crutch. All of us do the best we can to live normal lives, but when you have a chronic illness, normal looks just a little bit different.
For more firsthand stories of life with an IBD, check out the following blogs.
I co-moderate the Tumblr blog Crohn’s Sucks with my friends Stewart and Nicole.
Rebecca has written about her diagnosis of Crohn’s Disease.
Kristyn has written about her marriage to someone with Ulcerative Colitis.
Do you or a loved one have IBD? How has that affected your life? Are you doing anything for World IBD? Share your experiences in the comments!
Wow, I can’t imagine. Right now I’m dealing with pregnancy constipation. And it’s not fun either, but I know it’s temporary (hopefully, I’ve had this problem for most of my life, but pregnancy makes it much worse!) and I am trying different things to deal with it. I can’t imagine struggling with something since you were 8 (or probably before that when you didn’t know what was wrong!) I wish there was a cure. Ugh. Inflammation is no fun.
It’s actually kind of funny–because you need to find the humor in chronic illness. I pretty much scoff at anyone who calls in sick to work for diarrhea. If I thought that diarrhea was a reason to miss work, I’d have to go on disability for a complete inability to work! One thing I hope to do by talking opening about Crohn’s is get rid of the stigma and shame regarding public pooping! It’s part of life! Let’s stop embarrassing each other for needing to answer nature’s call during an inopportune time.
Thank you for sharing my story! I am so incredibly sorry you are going through this right now. This disease is not fun in the slightest, but I do know that the people that have it are some of the strongest and most inspiring people that I know. You included. Personally Humira has been one of the biggest blessings in my life. Taking the shot is a weekly (sadly I have to do it weekly) pain, but it has allowed me to (almost) forget sometimes that I am sick. I hope that your doctors find something for you that gives you some relief!
My follow-up appointment with my GI was Friday, and he approved my decision to go on Remicaid, which I will supplement with 6mp. So I had a chest x-ray and a ton of blood work (I think they took 5 vials?) to make sure I don’t have any dormant infections before weakening my immune system. One of my Crohnie friends is on Remicaid, and he always feels amazing after his infusion.
I’m glad that Humira is working for you! I know it’s more convenient for most people, but since I just quit my job to start my own business, I think my new boss will approve me taking time off every few weeks to go to the hospital. 😉
Wow thank you for sharing! We have a family friend who is 10 dealing with this, such a battle each day! You are clearly a fighter! Keep your chin up!
Thank you for your encouraging words!
I enjoyed this post, thank you for sharing! My sweet husband had severe Ulcerative Colitis, progressed to Colon Cancer, and he had a complete colorectomy at 23. He was in the marines then, and it was a very hard time in our lives. He still deals with the problems even though he no longer as a colon. I wrote a post today about having severe Rheumatoid Arthritis since I was 10…it is arthritis awareness month. I really love connecting and reading posts like this, we all need to be there to support each other. I hope we can connect further 🙂 http://www.chemistrycachet.com
Thank you so much for your honesty. My MIL has UC (or Crohn’s–she never received a 100% definitive diagnosis), and she doesn’t have a colon either. She’s also a survivor of childhood polio, so she’s really had the double whammy of illnesses! But she gets around great on her scooter whenever she and my FIL travel, and they LOVE to travel.
I will check out your blog.
My friend and old coworker does the IV injections every 6 weeks at the hospital. She says she feels like $1Million dollars right after then as the 6 weeks come to a close she’s ready to feel good again if that makes any sense. She was diagnosed 10 years ago I believe so again you hold the age record but I’m happy to put you two in contact, though I’m sure you have many friends to relate to. xoxo Joc