Category: crohn’s disease

Categories
crohn's disease diet food health

A beer lover’s Crohn’s diet

beer_for_breakfast_1

Amongst my top five least favorite things that people often say to me is this statement (or something similar to it): “You can eat that? My friend with Crohn’s can’t eat/drink that.” It makes me mad just thinking about it and is, in my mind, akin to asking someone who cannot eat shellfish why other humans can eat shellfish. Perhaps this is why I love this piece by David Obuchowski so much.

David is a touring musician with a severe case of Crohn’s disease — and he loves craft beer…a lot. Check out his piece on Drunkspin’s The Concourse. Lots to learn about beer here, which I for one, love.

Image by Sam Woolley.

Categories
biologic chronic illness Cimzia crohn's disease health pregnancy

Pregnancy, childbirth, and the whole shebang

(Yep, it’s been over three months since I blogged so let me apologize for that first and foremost. New year, new resolution — we’ll see how I do!)

The big news: at the end of November, I gave birth to a baby boy, Kai. Throughout the 10-month stretch, I remained pretty quiet about my pregnancy in terms of my illnesses. As you can imagine, we — my husband and I — were cautiously optimistic going into everything and only made the decision to try for a baby after many tests and gaining the consent of many doctors. Knock on wood, everything went incredibly well. Kai was born at full term weighing 8 lbs 3 oz, 22.75 inches (very tall!) and his Apgar score was near perfect.

Over the next few months of maternity leave, it is my hope to reflect upon the experience of going through pregnancy and childbirth being “high-risk” and maintaining my health while remaining on Cimzia. For any of you wondering, Cimzia is a class B drug (in the same category as Benadryl and Pepcid).

I’m also involved in a study with Cimzia + pregnancy and have already received some of the results from the first round of tests. Here’s the initial great news and I’ll share more as I receive it: a blood draw of the baby’s blood just after birth (literally, minutes after birth), as well as the cord blood, showed no traces of Cimzia. My own blood showed very low traces of the drug, but I wasn’t so concerned with my own draw as you can imagine.

When making the decision to remain on Cimzia, I’d been told that because of the size of the molecules in the drug, it would not cross the placenta. It wasn’t until I was informed of the results of my own tests that I truly believed it. To say I was relieved would be the understatement of the century.

As always, it’s important to know that I’m not a doctor by any stretch of the imagination. I am however a very resourceful and proactive patient. During my pregnancy I was constantly searching for examples of women who’d had babies while on Cimzia and did not uncover much. So if you’ve found this post because you too are searching for answers, please feel free to reach out to me directly and I can hopefully point you in the right direction!

Happy new year Chronic Stylers and stay tuned.

Categories
crohn's disease depression empathy health prednisone steroids stress

Is this normal? Patient communities and the virtual water cooler

For the last month I’ve had a few flares and consequently have been placed on a “low-dose” of prednisone for about 20+ days now (in addition to my usual drug regimen). I’ve noticed, once again, a few things… (see “The $10 cure-all“)

First, my emotions and ability to reason are entirely out of whack. I find myself reacting with a degree of intensity and agitation to things that are completely out of the scope of what is normal for me. Almost like an out-of-body experience where I think, to myself, “Why am I so angered/saddened/frustrated by this?! This is not normal.” (My mom always says that “Normal is a setting on the dishwasher.” How right she is.)

Second, I find myself hyper-frustrated that it is so difficult to express the anguish this drug imposes — with its emotional warpath — to anyone who is unfamiliar with it (not to mention the physical ramifications). I know I write often about the importance of empathy in a chronic illness sufferer’s network, but it feels far more important when you’re right smack in the middle of a flare.

My colleague Rodrigo Martinez shared a really interesting visualization by Symplur on the rise of patient communities on Twitter, and I have to believe that experiences like my own are a large part of the reason for this growth. Symplur calls it the “virtual water cooler” and I couldn’t agree with that epithet more. I may not be able to rationalize the “why” something is happening or “how” I am feeling exactly, but I can find other folks dealing with a similar predicament — and let them know that they’re not alone. Now to tweet, “Is this normal?”