If you're living with a chronic illness, you're in the right place.

Wednesday, May 29, 2013

The Art of Misdiagnosis

We follow quite a few patient advocacy groups on Twitter, one of which is Hibbs Lupus Trust.  This morning I saw several retweets of their patient-followers discussing how long it took for them to get an accurate diagnosis of lupus.  For some, it was relatively quick - a few months.  I say relatively because for some it was over a decade.  How can this be, in our super-duper modern medical system?  The most advanced technologies to date are at our physician's fingertips, yet it took 15 years to get diagnosed?

Diagnosing a chronic illness can be tricky, especially if the illness is insidious or rare. According to the American College of Rheumatology, there are around 330 possible clinical presentations of systemic lupus erythematosus. Depending on what part of the country you live, your access to high tech medicine may be limited.  Or, depending on how rare your condition is, there may not be any specialists in a 500 mile radius who've heard of, let alone know how to treat, the disease.  I know of many families who travel many miles to go to Cincinnati Children's Hospital for their Eosinophilic GI Disease program.  When I saw clients at Northwestern, the same was true for their adult EGID program.  Imagine getting on a plane instead of getting in your car to see your doctor. 

I just need to go to my appointment.  Thanks.
I know of a lot of people, myself included, who were either misdiagnosed or took a while to find out what the heck was going on.  Personally, I received my Crohn's diagnosis rather quickly - within 3 months of my going to the gastroenterologist.  But when I didn't get better with Pentasa and Entocort as expected, the whole thing was thrown into question because my tests indicated a "mild" case.  I then spent the next year and a half or so undergoing tests that were so randomly positive, negative, or inconclusive it was enough to drive you to drink.  For example, I have chronically low vitamin B12 because I have Crohn's in my terminal ileum, where B12 is absorbed, but the test that measures if I absorb B12 appropriately came back normal.  My IBD serology test came  back positive for Ulcerative Colitis, not Crohn's, yet my colon was clean as a whistle.

So, what does the research say about the average amount of time to accurately diagnose various chronic conditions?  

  • More than 40% of patients with Rheumatoid Arthritis take more than 6 months for diagnosis.
  • It takes twice as long to diagnose autoimmune hepatitis in people over age 65 compared to younger adults (4 months vs. 8 months).
  • In several European studies (Germany, France, Italy, Austria), the average time to diagnose Crohn's disease in children ranges from 4 to 10 months.  In the United States, the average ranges from 3 to 5 years for both children and adults.
  • In rural communities in the United States, it takes around 3 years to diagnose lupus, with the high end of the range approximately 11 years.
  • The median time to diagnose eosinophilic esophagitis in children is around 3 years.  This tends to be longer in adults because the condition is often misdiagnosed as GERD (gastroesophageal reflux disease).
This is just a snapshot of some of the research data on time to diagnose chronic conditions.  I've only included a handful of studies and I'm sure there are bigger ranges than I've been able to capture in this post.  A lot of the time, the average patient gets lost in the research data and their personal experience may fall well outside of lines of text in a journal publication or a value in a statistical analysis.  Medical professionals need to remember that.

What has your experience been in getting an accurate diagnosis of your chronic illness?  We'd love to hear from you!

Dr. T.

Monday, May 27, 2013

CCFA Symposium

7:38 PM Posted by Stephanie Horgan , , ,
This is a belated post from when Tiff and I were able to attend the Crohn's and Colitis Foundation of America's 17th Annual Educational Symposium. This year it was held in Skokie, Illinois, just minutes away from our new office location in Evanston.

Tiffany and I didn't present this time around, but had a booth in the Exhibit Hall. It was truly a wonderful day of meeting with patients and professionals that were all there for a common cause...Inflammatory Bowel Disease. As you all know, IBD is one of our passions at Oak Park Behavioral Medicine, and cause close to our heart. With nearly 1 in 200 Americans with this illness, there seem to be more and more referrals we get that are newly diagnosed kids and adults with IBD. The first place I encourage patients to visit is the CCFA website.

They have a list of research studies and clinical trials currently going on, an interactive disease tracker to help manage symptoms, a special section for college students, and of course information on Camp Oasis, where Tiffany and I met. Camp Oasis is a wonderful place where kids, ages 7 through high school can come for a week to meet other kids with IBD and feel normal.

We will continue to partner with the CCFA and offer those with IBD support that they deserve. Our practice is dedicated to helping patients cope with the mental and emotional pieces of chronic illness. Spread the word!


Saturday, May 25, 2013

A Day in the Life

6:23 AM Posted by Tiffany Taft , ,
Woke up, fell out of bed
Dragged a comb across my head
Made my way downstairs and
Drank a cup...
(The Beatles)

Except yesterday was a rather large cup of hypoallergenic formula, which I committed to drink for 1 day in lieu of food as part of the annual Eat Like Us challenge for EGID awareness.

I'm ready.  Let's do this.  I asked some reliable sources and found out that for my gender and weight, I'd need to drink about 64 oz of formula to get adequate calories for the day.

When I saw clients at Northwestern, I met with a woman who had to go on an all-formula diet for several weeks.  We talked about how hard this was and I remember her saying "I was able to get about 20 ounces down today."  I never really understood what that meant until yesterday.  For my experience, I opted for Alimentum baby formula, which isn't exactly what people with EGIDs typically use, but is similar.

Here are the highlights from my day in the life:

[7:30 a.m.] I left my house for a long day seeing clients as part of a contracting gig I have where I go out to nursing homes in the Chicago suburbs.  So no sitting in my own office.  Today I needed to be in public.  I was also going to 2 new sites where I hadn't been before, so I didn't know anyone.  I head to Walgreens down the road from my house to get the formula, fully intending to get the pre-mixed liquid rather than the powder because, in my mind, the liquid must be somewhat easier to drink.  Unfortunately they only had the powder.  Disappointed, I got in my car and headed west and tried to remember what stores carried the liquid.

[8:15 a.m.] I opt for a CVS down the road from where I need to be at 8:30 but they too only carry the powder.  Running out of time, and my stomach growling, I grab a can of powder, a big bottle of water, and a 32 oz. plastic bottle to mix the formula in.  The dread has begun to set in.

I love the smell of Alimentum in the morning.
[8:20 a.m.] Sitting in my car, I put 15 scoops of formula in the container (1 scoop for every 2 oz of water), fill it with H2O, and shake in a futile attempt to get all of the powder to dissolve.  I open the flip-top lid and the smell wafts out into my nose.  At first, I try drinking with a straw to avoid the formula chunks but it's excruciatingly slow.  I ditch the straw after a few gulps and decide to drink it as quickly as possible.  Think a frat guy shotgunning a can of MGD.

I get in about 24 oz of formula and sit for a minute, eyes closed, hand to mouth, processing what I just consumed.  I spot a piece of Wrigley's spearmint gum, read the label to make sure it's EGID-safe, and pop it in my mouth to try to get rid of the taste, which I can only describe as being like musty corn.

A picture's worth 1,000 words.
[8:27 a.m.]  I pull out of the CVS parking lot and experience my first "formula burp."  I'd been warned about this phenomenon, and it did not disappoint in it's gross factor.  These continued throughout the morning.

[8:35 a.m.]  I arrive at my destination and think about if I bring in my formula container to try to get more down and wonder how the people at the center will perceive me.  I think about my options to explain why I'm drinking baby formula.  I can tell them the real reason, to spread awareness about EGIDs, but that feels like an easy way out compared to what a person not doing this just for a day may experience.  I decide to bring the bottle in with me, but I can't help feel a bit of shame and worry that I'll be thought of as "weird."

[12:45 p.m.]  It's time for me to go to the next center for the day.  Formula burps have subsided for the past hour or so, and I'm hungry.  But I'm dreading drinking the next batch of formula.  I'm sorry to admit I never took out the bottle to drink while I was there.  I go back to my car and decide to drive to the next place before making the next batch.  During my 30 minute drive, I notice how acutely aware I've become of restaurants.  It's like I see every. single. sign.  I pass a pizza place and can literally taste and smell the pizza.  Even White Castle, reserved only for meals after a night of too much drinking, seems oddly appealing to me. I also become acutely aware of how many restaurants there are.  They're everywhere.  It's like they were gremlins who got wet and bred.  I'm pretty sure I passed 67,000 Taco Bells on my 15 mile excursion, and was painfully aware of the recurring thought "You can't have any of that."

May or may not be actual road.
[1:15 p.m.]  I arrive at the next center, park my car, and whip up the next batch of formula.  I've been dreading this all morning.  I don't shake it long enough and when I take the first few sips I'm greeted by some rather large chunks of mushy powder that I spit back into the bottle.  Regrouping after giving it a few more shakes, I drink another 24 oz or so.  This time, I'm out of gum.  I look around my car for something to kill the taste and there's nothing to be had.  I actually considered licking some chocolate off an old protein bar wrapper in the compartment of my door.  The sad thing is the only thing that kept me from going that low in life was that I knew it wasn't EGID-friendly.  I gain my composure and walk into the center to see my last clients of the day.  Thankfully the formula burps weren't as frequent this round.

I considered burning the container.
[4:00 p.m.]  I get in my car to head home for the day and look at the can of formula with sheer disgust.  I'm thankful that I only have a few more hours of this and on my drive home reflect on what it must be like to not have that option.

[4:45 p.m.]  I get home and decide I can't drink any more formula.  That 48 oz will have to do, and think of my old client.  This is what she meant.  I would rather be hungry than drink another drop of formula.  I switch to water for the rest of the day, and watch my husband and daughter have dinner, trying not to feel bitter.

Later on, I was talking to my husband about the experience, especially those formula burps which serve as a disgusting reminder of what my diet was.  When we were in Japan in 2007, we went to a Thai festival and had durian.  You may have heard of this fruit, which is thought to be one of the worst smelling things on the planet.

Smells like raw sewage, rotten onions, or "smelly rocks."  Who wants some?
My friends and I felt like we had to try it, because we're stupid.  It actually doesn't taste too bad.  Being naive Americans, we were having beer with our durian and a nice Japanese man approached us with a warning that drinking beer with durian would cause "fire" in our stomachs.  We assumed he meant heartburn and shrugged it off.  What this nice man meant was we would get durian burps, and these burps wouldn't be like the taste of the fruit but its smell.

I'm still trying to figure out which is worse, formula or durian burps.

This morning I was able to resume my regular diet, yet I can still vaguely taste the formula every once and a while.  I know how fortunate I am that my day in the life was only a day, and that kids and adults living with EGIDs who must use formula for their nutrition don't have this luxury.  And how this must affect their mental well-being, especially in the beginning.  I'm glad I did this, as I have an even deeper appreciation for their experiences. It's not something I'll be forgetting any time soon.

Dr. T.

Tuesday, May 21, 2013

National Eosinophil Awareness Week

10:20 AM Posted by Tiffany Taft ,
May 19 through the 25th is National Eosinophil Awareness Week.

Last week I blogged about the "Eat Like Us" challenge that I hope you have decided to take part in this Friday.  I will be drinking only Alimentum formula for the day and eating a lot of dum dum suckers to disguise the taste.  I realize there is some milk derived product in Alimentum, but my access to Neocate and other truly hypoallergenic formulas isn't what it once was; and since I've done the 8 food elimination diet in my life, I wanted to kick it up a notch and see what life on these not-so-tasty formulas is like.  No offense to Abbott Labs, but this stuff leaves something to be desired.

Why beat around the bush about it?
I hope you'll join me on Friday for the challenge, whether it's eliminating the top 6 foods from your diet to sustaining for a day on formula.  Let's put on the shoes of those who live with EGIDs and experience first hand what life is like, if only for 24 hours.

EGID factoid of the day:

The first study to mention eosinophilic esophagitis, a case study in the journal Gastroenterology, was published in 1978.  Over the next 20 years (1979 - 1999) a total of 150 studies were published on EGIDs.  Since 2010 alone, 593 studies have been published.  However, only a handful address the emotional and social issues EGID patients face, but we're working on increasing that number as we speak.

Here's one you can help us out with:  https://www.surveymonkey.com/s/egidips

Dr. T

Tuesday, May 14, 2013

Eat Like Us

6:03 AM Posted by Tiffany Taft , , , ,
May 24th marks the 5th annual "Eat Like Us For a Day" Challenge, an event sponsored by GAEOS (Georgia Eosinophilic Disorder community) that aims to raise awareness of Eosinophilic Gastrointestinal Diseases (EGIDs).  Even if you've never heard of an EGID before, I highly recommend taking part in this one-day event.

So, what's an EGID?  

EGIDs are chronic conditions of the digestive system that are caused by too many of a certain white blood cell, the eosinophil, congregating in a certain area of the system. These white blood cells respond to some sort of environmental trigger, usually food, and attack it.  Please note that EGIDs are not the same thing as a food allergy, which is caused by a different reaction from the immune system.

The most common place for battle seems to be the esophagus, resulting in eosinophilic esophagitis, but the stomach, small, and large intestine can also be affected.  The symptoms reflect the part of the GI tract affected, and include abdominal pain, reflux, nausea, vomiting, and diarrhea.  Patients also report that they experience other symptoms outside the digestive tract like joint pains, fatigue, and eczema. 

In eosinophilic esophagitis, the esophagus can be damaged pretty severely which can lead to significant narrowing, sometimes even to the point its opening is the size of a straw.  Swallowed food will get stuck and a doctor, usually in the emergency room, will need to go in and remove it.  There are procedures to stretch the opening again, but these are invasive and risky.

Normal Esophagus
Eosinophilic Esophagitis
EGIDs are pretty poorly understood by the medical community, but are getting more attention in recent years.  The number of people newly diagnosed with these conditions is exploding all over the world (Around 1 in 2000 now), and a condition that was once considered one of childhood has shown up repeatedly in adults.  

Treatments for EGIDs are limited and include steroids, either topical (e.g. swallowed Flovent) or systemic (e.g prednisone), and allergy medications (e.g. Singulair). Unfortunately there is an ongoing problem of even the best physicians not having heard much about EGIDs and not being able to identify them when patients come in with symptoms.  It can take years to get an accurate diagnosis, which is something we see in many chronic conditions, but frustrating nonetheless.  

Uh, doc....doc....hello?
Another potential treatment for a person living with an EGID is changing their diet and eliminating the foods that cause those eosinophils to attack.  The top 8 offending foods are:  dairy, eggs, wheat, soy, peanuts, tree nuts, fish, and shellfish.  No problem, right?  There are lots of people who are lactose intolerant or who have Celiac disease.  

Unfortunately, for a lot of people with an EGID, it's not just dairy or wheat or soy, but a combination of several if not all 8 of those foods.  For others, their list expands beyond the top 8 to include anything from lettuce to beef to blueberries to sweet potatoes.  It can take months, or even years, to pinpoint the exact trigger foods through elaborate elimination diets that include removing all food from your diet and living on formula for a while to let things in your system calm down.  

For some, they find out they can only eat a handful of foods without getting sick. 

Imagine the impact that this has on a person's quality of life, no matter what age.  You can experience the EGID diet first hand by taking part in the Eat Like Us day on May 14th, which wraps up National Eosinophil Awareness week.  Check out their Facebook page and join in on the cause.  

Just be sure to read your food labels - dairy, wheat and soy is in just about everything!

For more information about EGIDs please visit two great patient advocacy groups

Dr. T.

Tuesday, May 7, 2013

Why Blogging is Good for You

When I was in graduate school one of the first research projects I worked on was evaluating expressive writing as a form of treatment for people living with Irritable Bowel Syndrome.  In case you haven't heard of this term, expressive writing  in the research world involves the use of directed writing exercises as a means to reduce the negative effects of stressful life events.  Anyone living with a chronic illness would agree that it can be a stressful life event.

May or may not be actual representation of my 1st year with Crohn's Disease.

One of the pioneers of the research on expressive writing is James Pennebaker down at the University of Texas at Austin.  He has devised an entire system and software to analyze writing samples and understand how expressive writing can have positive health effects.  His findings include:

  • People who write about their worries and concerns have a decrease in physician office visits when comparing pre- and post-writing periods.
  • Writing about troubling topics has been shown to improve immune system functioning, including antibody responses to various viruses and increases in T-Helper cells.
  • Expressive writing leads to reductions in autonomic nervous system activity, including decreased heart rate and increased muscle relaxation.
  • While writing about emotionally distressing topics can stir up negative feelings in the moment, the long term effects show an overall decrease in emotional distress after these writing exercises.
  • Actively trying to suppress thoughts about unpleasant or traumatic experiences leads to suppression of the immune system.
Pretty cool, isn't it?  If you're a blogger, you may have already noticed the benefits of getting it all out on paper.  Or on screen, as the case may be.  We know that writing creates different changes in our brains compared to simply thinking about an event.  When we write, our thoughts are translated into expressed language and that seems to be where the magic happens, although it's not clear why. 

Snoopy, the original blogger.
The reason researchers in the chronic illness world are interested in expressive writing is the positive effects it can have on patient outcomes.  Don't get me wrong, this isn't the magic cure for any one condition; but it can help.  For example, there are published studies on the benefits of expressive writing for:
  • Cancer
  • Irritable Bowel Syndrome
  • Infertility
  • Heart Disease
  • Hypertension
  • Chronic pain
  • Rheumatoid Arthritis
  • HIV
So are there guidelines about writing from all of this research?  It seems that writing once a week over a month (or longer) seems to have greater benefits than writing every day for several days in a row.  Everyone seems to benefit from writing, regardless of age, gender, ethnicity, or personality traits.  If you're just getting started, you may want to write every day for 3 or 4 days about a topic that's bothering you.  Then you can taper back to roughly once a week.

I realize some of your calendars look like this.
Find more of a down time in your day to write, rather than trying to cram it in somewhere between meetings or appointments.  Writing shouldn't be stressful  or feel like a chore.  You don't have to publish your writing on a blog to get these benefits.  Writing works whether others read it or not, and some research suggests keeping it anonymous may be helpful for some people.  What we do know is getting it out is good for us.  So find a way to make that happen.

We'd love to hear your thoughts on this, especially if you've found blogging to be helpful in your journey with chronic illness.

Dr. T

Friday, May 3, 2013

Chronic Illness and Suicide

8:31 PM Posted by Stephanie Horgan , , ,
Chronic illness is complicated. When one is newly diagnosed, there is a challenge of learning how to explain your illness to others, and learn who to let in on your journey of ups and downs. Here are some of the common reactions we get when we see clients who are newly diagnosed with an illness, trying to navigate a world of stigma and shame. "Why would anyone want to hear about my illness? And what's the point of talking about it- either way I have to deal with it and I don't want pity. I hate burdening my loved ones. What if people change how they think of me? What if people ask embarrassing questions or have judgmental reactions?" 

Honestly, these are all valid concerns! We spend time talking with clients about each of their questions and also encourage them to tell people who are safe, and to only disclose what they are comfortable with. We also know that not everyone benefits from a support group, and that everyone reacts differently to their diagnosis. Some may want to externally process every detail of their illness with many loved ones, some may keep things completely private, and then there are people in the middle. 

One thing we know, regardless of who you tell, is that chronic illness is not easy, and is a lifelong challenge that should not be done alone. An amazing organization is out there called the Great Bowel Movement. Their mission is to help patients embrace their disease, be proud of their experience, and spread awareness throughout their communities. We at Oak Park Behavioral Medicine are proud to know the founders, and are encouraged at just how many people are choosing to wear their "Ask me" shirts in order to diminish the stigma there is about illness, just by starting conversations with people. What a simple, yet incredible idea! 

One person who did not openly talk much about his illness was Internet pioneer and activist Aaron Schwartz, and a Rolling Stone article briefly mentioned his ulcerative colitis and described it as "a condition that would embarrass and plague him for the rest of his life." He was a well-known blogger and did not talk about his illness much, and when he committed suicide this year (despite being part of a well-known lawsuit), it made me stop to think about what role chronic illness has in suicide. Does living with a chronic illness put you at higher risk for suicide? What toll does hiding embarrassing symptoms day after day from others take on someone? I am not implying that everyone needs to blog about their illness, as suicide is much more complicated. But I am suggesting that social support and openness about your illness may help prevent depression and suicidal ideation

Its not something people talk about very often, but its something that needs to have light shed on it. Chronic pain is a known risk factor for suicide. In a recent study, it was found that significant predictors of suicidal ideation was both distress in interpersonal relations and self-perceived burden to others. 

Another study found physical illness constitutes a significant risk factor for suicide, independent of psychiatric and socio-economic factors. This same article states that previous epidemiological studies have indicated an increased suicide risk associated with cancer, diabetes, epilepsy, multiple sclerosis, stroke, myocardial infarction, and allergy. 

So in order to bring awareness to this important issue, we are beginning the discussion. We encourage you to speak up. Dial 911 or a suicide hotline if you are having suicidal thoughts. Reach out if you are struggling. Push through the hopelessness and depression, and let someone know how you feel. Call a loved one if you need help. And when necessary, enlist a professional to guide you along the way. You may be surprised how letting someone into your darkness can be helpful and give you hope. You are not alone.