So what's new with you?
Yesterday, May 19th 2016, was World Inflammatory Bowel Disease (IBD) Day. And tomorrow, May 21st 2016, is the last day of Eosinophilic GI Disorder (EGID) Awareness Week. We sure have a lot of awareness days, weeks, and months don't we? I personally am all for advocacy efforts, especially for diseases that are poorly understood, not well known, and potentially stigmatized. I get my panties in a bunch when corporations come in to make a buck, like when they made those pink drill bits for breast cancer awareness month. No.
Twitter was full of great informational posts and stories about life with IBD yesterday. And on Wednesday, Steph and I hosted a Twitter chat on mental health in IBD and it was fantastic with really great insights from people living with IBD.
You can check it out under #IBDSC.
So we haven't been totally lazy when it comes to social media.
This weekend is the big gastroenterology conference, Digestive Diseases Week, in San Diego. I'll be heading out way early Sunday morning to attend for the last 2 days and stand by my poster on a novel test for dysphagia, or difficulty swallowing. I know, exciting stuff! DDW is a bit of a crazy experience because it's so. big. I have my schedule planned and will scan the poster sessions for any and all mental health research to write about here. Unfortunately the poster sessions are where most mental health research ends up at DDW, not the actual presentations to a room of people. I really wish that would change.
Back to the convergence of World IBD Day and EGID Awareness Week.
I had a bit of a flare up in the ol' Crohn's disease last fall and at an appointment with my gastroenterologist I brought up a symptom I'd had for, oh, about 5 years that had never crossed my mind to mention to her - sometimes when I eat, food gets sort of stuck in my esophagus (technical term: dysphagia. You know, like the RESEARCH I just mentioned I did. What is wrong with me? 5 years?). It always makes its way down to my stomach, but there are times where it seems like it might not make it. Putting your arms over your head was a trick I learned from an EGID patient I once saw for therapy and I'd just do that. It's painful in the moment but it passes. I blamed eating too quickly ever since having children. I mean, seriously, those things make you hoover your food like you've never done before. She informed me that this was not normal, hoovering aside.
Fast forward through the upper endoscopy, round of PPI medication, and meeting with an allergist for allergy testing (I'm already allergic to cats, trees, mold, grass, dust mites), lo and behold I have eosinophilic esophagitis (EoE). After the endoscopy came back highly suggestive of EoE I didn't really react other than to laugh because this is my thing. I research social and emotional issues for people living with EGIDs. I wrote the quality of life questionnaire many researchers use now. Somehow this was supposed to protect me? Let's be real, this stuff happens with no explanation other than it happens.
Learning: EoE is considered an allergic disease but not true food allergies. Instead, certain foods trigger an increase in eosinophils (a type of white blood cell) to attack the esophagus. Kind of like Crohn's but different enough. The current treatments are topical steroids, systemic steroids like prednisone (nope), and eliminating the foods that trigger the allergic response. I opted for the diet.
But let's continue with the "say what?" for a second.
How in the hell did I have EoE? Am I hanging out with EoE docs too much? Did it seep through my computer screen or did I catch it from people at a CURED Patient conference? Of course not. But seriously, EoE and Crohn's Disease?
Turns out this is somewhat of a rare thing. I don't want to say I'm now a super special snowflake, but there don't seem to be a whole lot of people (that they know of, anyway) living with IBD and EoE. So you can interpret how special this is as you'd like.
After the allergy testing came back positive for a ridiculous number of foods, ok like 10 foods, my doctor and I came up with an elimination diet plan that I'll start after I get back from DDW. This is one of the things I love about my doc, she gets that life has to continue while you're following one of these crazy diets. And going to a wedding, having my own wedding anniversary, and traveling to San Diego would be a lot harder on an elimination diet that includes soy, peanuts, almonds, sesame, barley (BARLEY?!?! But, beer!!), wheat, apricot, and celery. But who cares about celery? Buckwheat is also a no-no, but other than some Japanese noodles where does one consume buckwheat, and tuna was on the line but not on the elimination list. I start the diet Tuesday and get another upper endoscopy July 5th to see what the state of the union is.
Because my doctor isn't a sadist, she said I could keep wheat for now and see what happens. If you don't have a non-sadist doctor, I highly recommend getting a new one.
Have you ever read food labels? Pretty much every food product made in the United States contains wheat or soy. A lot of the time, it has both. Whenever I make the drive down through central Illinois to visit my husband's family, all we pass along Interstate 55 is corn on one side, soy on the other. I get it, farmers need to make a living.
|Soy. Soy everywhere.|
In the past I have done the 6 food elimination diet, but not for EoE, so I know what this entails.
The endless reading of food labels, checking for hidden ingredients on the do not eat list.
The risk of cross-contamination when eating anything you don't make yourself.
No more non-dairy creamer.
Explaining to other people why you can't eat this, that, or the other.
Did I mention I'm a vegetarian? That'll be simple with the whole no soy thing.
As the time to start the diet gets closer, all of this has started to sink in and I've had my "are you kidding me!?" moments. When I go grocery shopping for the family, walk down any aisle, and take a box of some food off the shelf and put it back because "CONTAINS SOY" is clearly written on the side over and over again, I feel this weight on my shoulders and a little knot in my stomach (thanks, brain-gut connection).
I'm so focused on soy I've forgotten the other stuff I have to avoid. Like delicious almonds. And peanut butter. And a good craft beer. This is the Dean Wormer of Animal House diet. No more fun of any kind!
I may be a clinical psychologist, an expert in cognitive behavioral therapy, and know my way around EGIDs and IBD but I'm not immune to the emotional weight of a new diagnosis. Or an old diagnosis that flares up. Or the treatments. The damn treatments we have to go through.
I know how to reframe my thinking, not blow things out of proportion, not see things in absolute terms, relax, and all the other stuff I work with people on on a daily basis. But I still feel angry and sad, and I worry. Because that's what you're supposed to feel when your life changes so drastically. It's a human reaction.
I also know not to go there for too long. And to get it out. So if you'll bear with me, I'll be using this blog space for a while to do so. I thought about keeping a separate personal blog for this because I'm supposed to maintain boundaries as a psychologist. But you're not my patients, and if my clients are reading this blog then (hi) they know a bit more about me, and if my entries help someone learn something or feel better then it's worth it.
Cheers (until Tuesday)