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Friday, January 19, 2018

I Swear It Wasn't a Resolution

7:31 AM Posted by Tiffany Taft , ,
Hey, happy 2018 everyone!

Did y'all make your new year's resolutions?  Did you fall back to old habits yet?  I hope not, but odds are you have or will because new year's resolutions are usually nonsense.  It's not how humans operate.  So don't feel bad.

I typically don't make resolutions but as 2018 got rolling I had a thought, not to change my behavior in some excessive way, but that maybe this year would be a better health year.  The past few have been kinda off in that department, so I figure I'm due for some peace and quiet on the health front.

I made it 8 days.

While on vacation in a sunny place that my friends and family disliked me immensely for, as most of the country fell into a deep freeze (-11 F in Chicago back then), I developed an odd rash on my shins.  It wasn't raised or itchy like your typical rash so I just kind of ignored it, as I like to do.

After conferring with Dr. Google and a friend of mine while on a long layover, I ruled out lupus (Thanks Dr. House!) but vasculitis became a possibility.

Vasculitis is a general inflammation of your blood vessels and can range from mild to organ destroying, depending on how widespread it is.  Treatments include prednisone and methotrexate, 2 awesome drugs as anyone who've ever taken them will attest to.

Luckily I had an appointment with my gastroenterologist the next day and she could look at the rash and tell me it was something simple and  I would wait for it to magically go away.

So then I was sent for an array of labs to rule out vasculitis.

Thankfully it wasn't that, but she couldn't tell me what the hell it was. Because that's my body for ya.  Never a typical presentation of anything.  But nobody needs vasculitis in their life, so bullet dodged.

I made it another 10 days.

My father is 75 years old and his health is up and down.  After a scare with sepsis late last year, I became more involved in helping with his health care.  I think they call this being in the "sandwich generation" where you're raising young children and helping aging parents.

Does that make me the ham or the cheese?
He's been complaining of trouble swallowing for a while, but mostly to liquids.  After an upper endoscopy last November this progressed to solids as well.  I got him in to a colleague at Northwestern for another endoscopy to get a 2nd opinion and he was diagnosed with Type 1 Achalasia, an incredibly rare disease that causes the esophagus to, well, not work properly.  Thankfully type 1 is the most mild and there are a few treatment options.

Read more about achalasia!  You know you want to:  https://www.medicinenet.com/achalasia/article.htm

So I've been chatting with my gastroenterologist-and-friend about my dad's health issues and she asked me how his endoscopy went and I told her.

G&F: "So what do you think about doing that manometry that we've talked about, now?"

You know, to rule out achalasia.

I'll get into the details esophageal manometry another time, but it's a test to measure how well the muscles in your esophagus work and can diagnose achalasia and is essentially the waterboarding of medical testing.

Ok that might be a bit hyperbolic.  But it's considered generally unpleasant by most people and for those with a strong gag reflex, aka me, it's waterboarding.  I've been refusing this test for about a year and a half because I've chalked up my swallowing issues to eosinophilic esophagitis.  I've never had a manometry but I have been through 2 small bowel enteroclysis, which also involve swallowing a small tube and were highly unpleasant.  HIGH-ly.

But she reminded me of my atypical presentation of EoE, and how bad untreated achalasia would be in my life.  So I begrudgingly agreed to do it.  But not without at least some Xanax.

Cannot WAIT until February!


Friday, December 29, 2017

Game of Crohn's

4:30 PM Posted by Tiffany Taft , ,
There are 2 days left in 2017 and I've considered writing this blog post for most of the previous 363.  It's on a topic that nobody wants to talk about. Ever.

Let me start by saying Crohn's disease is a stigmatized disease.  A recent study found it's more stigmatized than HIV/AIDS and genital herpes among the general public.  And this topic, I think, takes that stigma and multiplies it by about 8.

Most people who know anything about IBD know it involves a few main issues:  diarrhea, abdominal pain, and sometimes blood in said diarrhea.  Because Crohn's is a giving disease, it also comes with a slew of other problems including joint pains, eye inflammation, skin inflammation, bone density loss, mind-numbing fatigue, and fuzzy toenails.

Ok maybe not that last one. 

Around 1/3 of us develop "fistulizing disease."  Or what I like to call body termites.  Fistulas aren't unique to IBD and can happen for other reasons, but IBD is a main source of the fistulas in the world. A fistula occurs when one part of your body creates a tract, or tunnel, to another part of your body.  It's not entirely known why the hell IBD starts this process, but it does and it sucks when it does.  Many fistulas form between the colon and the skin, but they can also tunnel to your bladder, another part of your intestines, or, for us ladies, the vaginal wall.

Fistulas are a bitch to treat a lot of the time.  And they often come with an abscess that can cause continuous drainage of various fluids. Depending on where the fistula starts, where it ends, and the state of your bowels you have a few treatment options:  1) you can have surgery (e.g. a fistulotomy), 2) have some dental floss strung through them to keep them open to prevent abscess formation (i.e. seton placement), or 3) hope to whatever force in the universe you prefer that one of the fancy biologic medications (e.g. infliximab, adalimumab) close the tunnel without further intervention.

I'm one of the 33% and have 2 fistulas during my 15-year Crohn's tenure. Let's call them Cersei and Joffrey.

Cersei was a simple colon to skin fistula that was repaired with fistulotomy in 2004.  I think it was 2004. That's what I always write on my surgical history forms, but honestly all this shit is a blur.

Joffrey, on the other hand, Joffrey has been in my life since 2006.  He was relatively well-behaved up until the past year when I had a pretty bad Crohn's flare.

For the record, I've seen about 4 and 2/3 episodes of Game of Thrones, but I know enough about Joffrey to liken him to a fistula.

Joffrey is a small bowel to vaginal fistula.  At least that's the theory, anyway.  Nobody really knows where Joffrey starts, but we have consensus as to where he ends. Because of the genuinely fucked up nature of this type of fistula, there are officially zero good treatment options.  The best bet is for medications to keep the disease in check which, in turn, keeps Joffrey quiet.  Surgery for a vaginal fistula is effective less than half the time and when you read up on the approaches you can't help but cringe. Transvaginal inversion repair? Endorectal advancement flap? Or in my case, a small bowel resection with god knows what else.

Joffrey comes with fun symptoms like the passage of bowel contents from a part of your body that should never pass bowel contents.  And because of this, Joffrey irritates the living hell out of things and makes you feel about the least attractive person on the planet. Joffrey is why I had to have 2 c-sections because of the high risk of jacking my area up even more if I went the way nature intended things to go.

Joffrey fucking sucks.

How in the hell do you try to tell people in your life about Joffrey?  I'm at least old and married with an understanding AF husband.  I feel immensely for the young women out there dealing with this S.O.B.

I don't know how many women living with IBD have a Joffrey in their life, but a 2007 study says these account for 9% of IBD-related fistulas.  So if we do a little math, statistically speaking....

1.6 million people with IBD, 33% of which, or 528,000 are in the fistulizing club.  9% of that is roughly 50,000 women.

The same number as those killed by drug overdose last year.
The same number as those who die from colorectal cancer each year.
The same number as those newly diagnosed with Parkinson's disease each year.
10,000 more than annual newly diagnosed cases of HIV.
10,000 more than those who died in a car accident last year.

With a Joffrey in her life. 

We should be talking about this more.  No matter how hard it is.


Sunday, October 1, 2017

The IBD Personality

5:26 AM Posted by Tiffany Taft , , , ,
Let me tell you about the IBD personality.  The antiquated and debunked theory that, due to certain personality structures or tendencies, a person will develop a destructive disease of the digestive system.

Surely we must go WAY back in the medical literature to find people who write about this!

I first learned about the IBD personality during my dissertation.  My project was the first study evaluating disease-related stigmatization in IBD patients.  You can read the publication here but the entire dissertation is about 150 pages long and who has time for that?  Let's just say you have to do a thorough literature review for a dissertation.  In that review, I came across research, published research, on the IBD personality.

I was floored.  Really, people of the 1940s?
I have encountered few calm, phlegmatic persons with this disease. Many of them were emotional, sensitive, rather excitable people. -  Dr. Bockus, 1945
Then again, compared to other prevailing medical theories of the time this wasn't really that bad.  I recently listened to a "The Dollop" podcast on Dr. Henry Cotton, a psychiatrist in the early 20th century who believed focal infection caused mental illness.  So he'd do things like pull out people's teeth, including his own wife and children, and when that didn't work, moved on to remove people's stomachs and colons and thyroid glands (?).

Funny, a lot of them didn't get any better.

However, Dr. Cotton was considered a pioneer in his field, the American Medical Association backed his work and the New York Times published an article on his work's virtues when it started to come under scrutiny. AND his practices were used up until the 1950s.

Maybe I should slow my roll about an IBD personality.

Now, if you do a Pubmed search for "IBD personality" you'll get some hits from recent research that doesn't imply IBD is caused by personality traits, rather personality traits can affect how a person responds to having IBD emotionally and socially.  That I get.  Our personalities do determine how we respond to anything, to a degree.
Dr. Riemer, 1960, believed Crohn's disease was a new disease from the "tensions of our times" and patients turned anger at the external world into internal anger, focused on the gut. He called this "entrail aggression."
So, what types of personality traits do patients with IBD have?
  • obsessive-compulsive behavior 
  • neuroticism
  • introversion
  • dependency
  • anxiety
  • overconscientiousness
  • repressed rage that cannot be appropriately expressed
  • perfectionism
The focus appeared to be more on ulcerative colitis than Crohn's disease, but both underwent personality inquiry and differences emerged.  I'll get to that in a minute.  Even Dr. Burrill Crohn, whom the disease is named after, wrote in his 1949 book:
The personality of the ileitis case is more stable than that of the patient suffering from ulcerative colitis or peptic ulcer .... The nervous, or rather, psychic manifestations of this disease are sometimes so manifest that they overwhelm the somatic manifestations .... The evident psychic and nervous symptoms that accompany ileitis often lead to delayed cognition of the true causes of the symptoms.... However ileitis can hardly be classed as a psychosomatic disease; occurrences or recurrences do not follow upon psychic shock as evidently as they can be observed in ulcerative colitis, with obvious relationship of cause to effect.
Other suggestions include patients with Crohn's disease have a constant desire "to be rid of'' events in their lives.  They repeatedly say they want to be done with school exams, with graduation, with a divorce, etc. And this personality trait can be acted out through the physical symptom, diarrhea.

That's right, Crohn's patients, you have diarrhea due to your deep aversion to tasks not being done.
The unconscious significance of cramps and diarrhea is a way of omnipotently controlling frustrating objects by squeezing them through the intestines and by devaluing them and getting rid of them as feces. - Dr. Sperling, 1960
Moving on.

Crohn's patients also tend to be in the middle.  As kids, when parents would argue, people with Crohn's attempt to act as peacemaker.  Crohn's patients repeatedly enter into conflict situations to try to resolve them, first with their own parents, then between boss and co-worker, spouse and in-law, etc.

So, Crohn's patients have diarrhea and, I assume pain, because they want tasks to be done except for those involving being a referee in conflicts.  Then it's game on, people.

We didn't forget about you, ulcerative colitis patients. You tend to withdraw from conflict. UC patients are also inclined towards introjection, or the unconscious incorporation of the traits of others into your own. You also tend to be neat and tidy, perhaps to an OCD extent.
Most of the housewives in the series were of the "neat and fussy" variety. The males were prone to express themselves by their care in personal appearance and dress. One of the patients became highly disturbed if anyone disarranged her toilet articles. One can only speculate as to whether the diarrhea is a subconscious symbolic method of expressing one's resentment at a neat and clean world which has betrayed one.  - Dr. Sullivan, 1935
Neat...and fussy....variety.  Someone wrote that in a medical journal.  Just putting that out there.

In the 1970s, things started to get offensive.  The creation of the Minnesota Multiphasic Personality Inventory, or MMPI, allowed psychiatrists and psychologists to give a True-False questionnaire to gauge several aspects of personality.  We still use the MMPI today, in its revised form.  I can say, however, I've never given it to an IBD patient.
Dr. Ford and his colleagues concluded that Crohn's patients use their illness to gain attention from their parents and to try to prevent loss - loss of love, loss of family unit (e.g., divorce).
You get the idea.

An unfortunate effect of this early, yet decades-long, theory of the psychological cause of IBD is a pendulum swing that resulted in gastroenterologists, and even some patients, essentially ignoring or denying mental health as part of the IBD patient experience.  Thankfully, the pendulum is swinging back to a place of integrated, multidisciplinary care that includes mental health.  But old ideas die hard, so patients need to continue to express desires for help without fear of judgment that it's them causing their disease, not a defunct immune system.

If I had to guess, IBD wasn't the only disease to be attributed to personality flaws.  But for some reason, people in the early to mid-1900s were kinda obsessed about poop and gastrointestinal functioning, so it may have gotten more attention than other conditions.

The good news is the last published study on the IBD personality was in 2017, thankfully in a pay-to-publish journal so it's essentially regarded as crap.

What I'm saying is this IBD personality nonsense is totally in the past. ¯\_(ツ)_/¯


Saturday, September 30, 2017

That's Probably Nothing

6:43 AM Posted by Tiffany Taft , ,
Ever read something on a medical test result that looked bad?  Or, at a minimum, a little suspicious and your doctor either doesn't bring it up or if you ask about it they say "oh that's nothing"?  And you're sitting there, kinda confused, kinda concerned. Why do they do that?

Since the creation of the electronic medical record, and patient portals, people have unprecedented access to their medical information.  Including reports from tests, from routine blood draws to complicated MRIs, that historically have only been seen by physicians.  Unless we specifically requested paper copies. This, combined with Dr. Google, has led to much more educated and informed patients.

*Cue old timey music*

Now kids, pull up a chair. I have a story for yuns....

People my age have one foot in pre-internet times and one in post. I first saw the internet and email in college in 1995 (Netscape Navigator, what?!)  I had an AOL account on a dial-up connection.  My first cell phone was a Nokia 5110 with PrimeCo as the carrier.  I used Limewire and Napster to stea....download music.  It took, I don't know, 4 days to get 1 mp3.
I was 22 years old in 1998, living in Wicker Park, a neighborhood in Chicago, before Wicker Park was "cool" (Thanks, Real World).  I literally had a prostitute living in the apartment below me and I sold cigars in a shop down Milwaukee Ave. where the owner was later sued for sexual harassment. I kneaded bread in a local bakery alongside undocumented Polish workers at 5 in the morning. My apartment building was between the "Occult Bookstore" and a gaudy Mexican furniture store. Across the street was The Double Door, where iconic musicians like The Smashing Pumpkins, Cypress Hill, and Chance the Rapper played before they were big.  These were good times.

Little did I realize, in the midst of all this 20-something fun and sweet technological advancements, I would be diagnosed with Crohn's disease in 2002.

I'm pretty sure my cell phone was a Sony Ericsson of some sort; I just remember a high tech color display. At this time, my early medical records were on paper, but some did end up in the newly implemented electronic system including the 2 barium studies that were the basis for my Crohn's diagnosis.

Back in '02, the "bottom-up" approach to IBD treatment was the norm - start with the least potent meds then work your way up to the strong stuff if those were ineffective. Remicade was the only biological medication on the market for Crohn's and it was considered new and risky and kinda scary. My GI wasn't sure it was really Crohn's after I failed to respond to budesonide, so I went a year or so with no treatment as he tried to figure it out.  He didn't want to be wrong and put me on Remicade.

In 2004, when I'd upgraded to the ultra-cool Motorola Razr, I grew my first fistula and my whole world changed. Little did I realize, I'd really grown my first fistula in 2002 (or maybe earlier) but my then-gastroenterologist either ignored it or missed it on those 2 barium studies.  I don't know what he was thinking because my clinic notes were on paper and I have no clue where those are today.

Also available in pink.
I've been in a bit of a flare up for a while, most of this year, and I was talking about my early Crohn's days with my current GI doc, which prompted her to go back and look at those old barium studies from 2002 I brought with me when I switched my care.  She sent me the following message via MyChart then asked me to call her:

"I went back and reviewed the enteroclysis scanned from 2002 into EPIC, 
and it appears there was a [small bowel] fistula based on that result."

I added the "small bowel" part.

In 2002, on 2 separate barium studies, a fistula was present from my small bowel but hadn't made it anywhere yet.  I'd never heard about this.  It never came up with my old doc.  My current doc periodically mentions a small bowel fistula in the context of my current flare and I was like "nah, that's not a thing" in my head, and just assumed she was confused there was one, not that she had read it 7 years ago when I came to her for my care. 

Why my former GI doc ignored the fistula is an unknown.  Am I angry about it?  Yes, because now that the eagle has landed, so to speak, I don't have good treatment options if my new medication doesn't work.  It behaved for 10 years, so I'm going to go with the meds will work.

But it also shows that tests are sometimes an imperfect science and clinical judgment is vital. There are going to be findings on a test that don't mean much of anything in the big picture of each individual patient, and a doctor will decide they're not worth treating or further investigating and everything is fine.  Additional testing or treatment would actually be worse, both in terms of the patient's health and unnecessary costs.  That's good doctoring.  But when something like this happens, it feels catastrophic.

I've had my share of normal tests when I'm symptomatic, abnormal tests when I'm not, and inconclusive tests that confuse the whole situation.  For me, medical tests invoke anxiety.  Not because I'm claustrophobic and need to spend time in MRI tubes, or I have a needle phobia.  The tests themselves don't scare me, it's the results process.  How will my doctor interpret something that isn't blatantly obvious, which, for me, is rare?  Will something get dismissed that will later come back to bite me in the ass?

My current GI doc understands this anxiety, and is able to talk me down when I get worked up.  I'm fortunate in that regard.  But if I could go the rest of my life without a medical test, that'd be cool.


Monday, August 21, 2017

Breaking: 100% Chance We're All Going to Die Some Day

5:26 AM Posted by Tiffany Taft ,

People love to cite them.  This is especially true in the context of medical research,  You know, so we all can be reminded of our inevitable mortality which will be brought on by some unpleasant disease because we ate too many rice cakes.

I would go so far as to say we have a love-hate relationship with statistics in that people are natural information seekers and simple numbers make it easy to understand complex things. But sometimes the simple numbers are associated with things we don't want to consider, causing a whole lot of cognitive dissonance, so we reject them as spurious tricks some nerd in an ivory tower came up with.

(Don't tell anyone but I'm a nerd in an ivory tower)

Research Mark. Possibly the best meme on the internet.
I've had this topic on my "what should I write about" list for a while, and a tweet by a member of my IBD tribe (Are people over the age of 40 allowed to use the word "Tribe"?) prompted me to sit down and write a, hopefully, clear how-to-read-common-statistics guide.  What are my qualifications?  I'm writing a blog, that's sufficient right?  I also spend half my time doing clinical research at Northwestern University and as part of that I run a whole lot of statistical analyses.  I've also taught advanced statistics courses to doctoral students.  I am, however, by no means a true expert on stats.  I do know enough to be dangerous.

Here are 3 statistical terms/keywords/phrases you often see in medical reporting and what the hell they actually mean:

1. Correlations.  You've probably heard the phrase "correlation does not mean causation."  Which is 100% true.  A correlation states 2 events or things are related to each other.  It does not mean that A causes B or B causes A.

One example is a large correlation between eating delicious chocolate ice cream and weight gain.  Let's say this correlation, reported as a small letter r, is 0.70.  Correlations range from -1 to 0 to +1.  If a correlation is positive (0 to 1) as A increases so does B (example:  heat on a stove and the temperature of a pot of water). If a correlation is negative (0 to -1) as A increases, B decreases (example: amount of water consumed and thirst).  So a correlation will never be 1.5 or 7.9 or -1200.  The closer the value is to 1 or -1, the bigger the relationship and if it is actually 1, we call this a "true relationship" in that when A happens B will always happen.  Or if it is -1, when A happens B will never happen.  True correlations almost never happen, especially in medical research.

Ok, nerd, what does that r = 0.70 for weight and ice cream actually mean?  A correlation of 0.70 is pretty big, by statistics standards.  When we see correlations this big in our results we generally get excited because it means we've found a strong relationship.  But in terms of how 0.70 explains the relationship between weight and ice cream, we have to think of a pie charts.  Mmmm, pie.
Literally my house on Sunday
There's a trick you can apply to correlations to find out how much of the pie chart is shaded in by the relationship of the 2 things the correlation is measuring.  You square it (not the pie, the correlation value), then multiply that by 100 to get a percentage.  The squared value of the correlation tells you, roughly, how much (or what percent) A explains B.  Or like this:

r = 0.70 (Ice cream sales and weight).  0.70 x 0.70 = 0.49 x 100 = 49%

So, this tells me that if I eat chocolate ice cream and gain weight, I can attribute 49% of my weight gain to eating chocolate ice cream.  That means that the other 51% is explained by other things.  What are these other things?  Could be genetics.  Could be exercise habits.  Could be metabolism rate.  Who knows?  Unless those things were also measured in the research study, we cannot answer the question.  There's a term for these things:  confounds.

2.  Odds Ratios.  These are a favorite to be picked up by the media.  Drinking wine every day makes you twice as likely to be awesome!  These types of headlines typically come from research studies reporting odds ratios, which is a more complicated statistical analysis than correlations.  If correlations are the equivalent complexity of the plot of a Curious George cartoon, odds ratios are more like the plot of Planet of the Apes.  So I won't get into the weeds of how they're calculated, but rather stick to how to understand them.  The important number to remember in odds ratios is 1, because as an odds ratio gets closer to 1 it's relevance decreases.  Odds ratios are always reported as a number followed by a range.  If the range includes 1 in it, even if the number is bigger than 1, the odds ratio is not valid.

Let's use the odds of a head injury in a car accident and not wearing my seatbelt.  I do a study and my statistics say the odds ratio of someone getting a head injury is 12.5 (Range: 8.2 - 17.9).  That means I'm 12.5 times more likely to bust my head in an accident if I don't wear my seatbelt, on average, but it ranges from 8.2 times to almost 18 times more likely.  This is an example of a good odds ratio (nowhere near 1, the range doesn't get close to it either) and the odds are significantly higher.

Now let's use the odds of drinking wine making people awesome.  I do another study and my statistics say the odds ratio is 1.9 (Range 0.37 - 3.5).  Notice the odds ratio is bigger than 1, but not by a lot, and my range passes under 1 (the 0.37).  So while, technically, people are 1.9 times more likely to be awesome after drinking wine, it would be wrong for me to report this as a significant increase in odds of awesomeness.  Even though that 3.5, or 3.5 times more likely to be awesome, looks pretty good, I have to take into account the whole picture.

3.  Percentages.  Another favorite of the media. My aforementioned tribe member tweeted an article on how using hair dyes or straightening products increases the odds of getting cancer in women by somewhere between 50% and 75%, depending on the march-of-death chemicals used.  She was rightfully concerned but skeptical about what the numbers mean.  Big percentages can look pretty scary, especially when we throw them out with the word "risk."  In statistics, the calculation is something called Relative Risk Ratio.  These are also more complicated stats, like odds ratios.

Any time you see percentages with risk increase, or decrease, you have to know the original risk value of the issue being discussed.  Without this context, the percentage is meaningless but can also look really fucking scary.

For example, if my risk of developing any type of cancer is 5%, and a study says using chemical hair dye increases my risk by 50%, then my new risk of getting cancer is 7.5%.  (5% x 0.50 = 2.5%; 5%+2.5% = 7.5%).  If a study says eating rice cakes increases my risk of cancer by 200% (note: there is no such study) then my new risk of cancer is 15%.

The thing about risk and odds is both of these statistical analyses rely on correlations at their foundation, so the same problems in over-interpreting them exist.  We use more complicated statistics to try to control for those confounds I mentioned, but we never can control for all of them.  It's literally impossible, but we try our best.  We also always report our statistics with cautious language.  Unfortunately this caution is lost in the hyperbole of today's media landscape and can leave people unnecessarily fearful.

So whenever you're reading the latest breaking medical news, drill down into the numbers a little.  Go to PubMed or Google Scholar and read the abstract.  You might even find the whole article available, depending on the publisher.  You'll probably see at least one of the terms in this blog entry and the cautionary way the stats are reported, because life, and people, are complicated.

Enjoy your chocolate ice cream, rice cakes, and wine.  And wear your seat belt.


Monday, August 7, 2017

Don't Tell Me I Have An Eating Disorder

5:53 AM Posted by Tiffany Taft , , , , ,
a disturbance in physical or mental health or functions; malady or dysfunction

I was in New York this weekend for the annual meeting of the American Neurogastroenterology and Motility Society, a gathering of experts in the field of functional digestive illness. This year had a heavy psychology presence, which was pretty exciting since psychology was integrated into most sets of talks on a certain topic or condition. Because, you know, psych is important.

On Saturday, Dr. Sarah Kinsinger, now director of the adult GI behavioral medicine program at Loyola University outside of Chicago, spoke on the topic of eating disorders. Sarah and I worked together at Northwestern for about a decade before she moved on to start the Loyola program. We talked a bit the day before about her presentation and she expressed some concerns about the potential for controversy due to the highly sensitive nature of the topic.

If you live with a chronic illness that makes you feel nauseous 23 hours a day or causes vicious abdominal pain or explosive diarrhea or constipation that makes your guts feel like they’re full of cement, you’re probably going to adjust your eating habits. It’s the logical and protective thing to do.

Temporary changes in diet are sometimes recommended to people with digestive illness.  Low residue or even enteral nutrition are used for active inflammatory bowel disease. Elimination diets for IBS (e.g. low FODMAP) or eosinophilic esophagitits (e.g. 6 food elimination diet) are evidence-based treatments regularly recommended by physicians and dietitians.

So who the hell are we to come in and talk about eating disorders in this context? Eating disorders are mental illnesses and the vast majority of people with GI illness are not mentally ill.

Traditional psychiatric eating disorders include anorexia nervosa and bulimia nervosa, with some variants based on symptom presentation, but overall these are the 2 most people have heard of. These are highly stigmatized conditions, even though the culture of the United States values thinness and equates it with beauty and health. That’s a whole other post. Hell, a whole series of posts.

 So when psychologists who operate in the gastroenterology world start talking about eating disorders, haunches can get raised. And I get that, both personally and as a professional. Let’s break down a few reasons why.

Back to the protective behavior of adjusting diet to control symptoms. I can’t think of a single patient I’ve seen over the past decade who came into my office and said “nope, haven’t done a thing to my diet since all this happened.

It’s a fundamental part of the information gathering I do when I meet with someone the first time - tell me about your diet and how it impacts your symptoms.

What have you tried to change? 
What works? What doesn't?
How does this impact your life? 

Answers range considerably, but overall I see some degree of food restriction, whether it’s a type of food (e.g. pizza or broccoli) or a group of foods (e.g. dairy), all the way to the extreme answers such as “I only eat white foods” or “I can only eat these 6 foods.”

People's relationship to food and eating can get dicey when, again, food is causing some pretty awful symptoms.  In an attempt to control these symptoms, we try to identify cause-and-effect patterns so we can make the necessary changes to feel better.  This is where the "disorder" thing can come in.  There's a line.

If I restrict my eating to the point my weight becomes unhealthy, this is a problem.

If I restrict my foods to the point I become malnourished, this is a problem.

If I become so anxious about eating that I avoid it as much as I can, this is a problem.

If I restrict my social life to the point of depressing isolation because of food, this is a problem.

Are these problems, either on their own or collectively, an eating disorder? Without the traditional criteria of fear of weight gain, body image distortion, or some other red flag behaviors absolutely not.

They are, however, disordered eating behaviors that need to be addressed.  But there's that word disorder again.  I honestly prefer to say unhelpful or problematic with my patients to avoid the sense of stigma that "disorder" when paired with eating can elicit in some.  But if we're honest, typically the behaviors that are intended to be solutions aren't solving the symptoms OR they're resulting in so many other issues both physically and psychologically that the person is still coming in to their doctor and they've been referred to me to help.  So something needs to change.

How do we change them?  That's complicated and a topic for another post that I'll get to soon. But I wanted patients to know that while us psychologists use the term disorder when talking about eating issues in digestive illness, it's much more complex than that 3 syllable word.


Tuesday, July 25, 2017

I Walk the Line

10:05 AM Posted by Tiffany Taft , , ,
Recently I ran a very scientific Twitter poll and asked people about how they'd feel if they found out their therapist had the same/a similar chronic disease as they did, if the disease was the reason the person was seeking counseling.

Here are the results:

Most people, 42 out of 49, would be thrilled to indifferent about the news.  However, 13% (or 7) would feel some concern or even switch therapists.  Since this is a very small sample of people, we shouldn't disregard that some people don't find this appealing.

I was diagnosed with Crohn's in 2002 and at that time was living a completely different life.  I worked in a corporate job writing code for .NET applications for a commercial real estate company. Exciting stuff, I know.  I was making a good wage, had health insurance (!!), and a clear career path laid out at 26.  I was also working on a huge project for Microsoft, as a client of the company I worked for, that I knew was going to fail.  We're talking 80+ hour work weeks, repeated trips to Seattle to try to essentially polish and roll out one enormous turd of a product upper management at the time decided was a good idea.

Then one day in February or so I went to the bathroom and created a crime scene in the toilet.  The rest is history. The annual mulling-over of my plan to return to graduate school for clinical psychology I'd done the last 7 years prior became a whole lot clearer and I walked away from everything to pursue my doctorate in 2004.  Bye, corporate Felicia.

The reason I bring up that history is, while my programming training took my analytical brain up a few pegs and made comprehending statistics easier, and my corporate days taught me invaluable lessons on navigating interpersonal dynamics and politics, I had to learn a completely new way of being and working that coincided with my new narrative of someone with an incurable disease.

When you learn how to be a therapist, they drive a few things in your head.  1) Boundaries with patients are vitally important, both for you and, more importantly, your patients.  2) Disclosure of personal information should be done with extreme caution and gravitas.  3) Don't have sex with your patients.  No really, don't do that.  4) Obligatory jokes about your mother, mind reading, analyzing people at parties will become status quo. And probably a few other things I've forgotten.

As someone who straddles the patient world and the clinician world, the first 2 on that list have evolved over the last 13 years.  If you follow us on Twitter or read this blog, you can see how I've opened up about having Crohn's disease, and as of 2016, eosinophilic esophagitis.  I still withhold a lot because I know patients, or potential patients who are Googling us, read our social media.  And stalkers. I had one of those, once.

As Twitter and Facebook and Instagram et al. either weren't around or in their infancy in 2004, and those who were users most likely weren't doctors or psychologists operating in the open under their real names, maintaining boundaries became trickier as social media use exploded, including among those who work in medicine.

If you ask 10 psychologists their thoughts on personal disclosure you'll get 7 different answers.  Opinions vary widely, from you should never tell patients anything personal to stories of completely inappropriate role reversal where the therapist is using the patient's time to work through their own issues.  Early on, I fell more to the "don't disclose" end of the spectrum but as I've worked with hundreds of patients over the years, I've learned the value of making myself less robotic and more human.  Keeping it real.  Whatever you want to call it.

Do I disclose in my sessions with patients my illness status?  Sometimes.  It really depends on the person and situation.  If I feel compelled to disclose, I do rapid mental calculations in my head about whether my disclosure will somehow benefit the patient, our relationship, and ultimately their treatment.  This calculation, to me, is critical. Whether a therapist has a chronic illness or wants to discuss any part of the human condition they relate to in their patient's story.

If the patient is newly diagnosed with Crohn's, or has never met anyone else with IBD and feels incredibly isolated, will my telling them "hey I have this too" help or will they launch into a lot of personal questions about my experience in an attempt to predict their own course?

If a patient with UC is struggling to reach their life goals with work or starting a family, will my disclosure that I have IBD and, thus, I have IBD and got a doctorate and am married and have 2 kids, help or make them feel worse because they compare themselves to me?

If I tell a patient with IBS that I have Crohn's disease as a way to relate to their symptoms, will that help or will they worry that I judge their disease as not as severe as mine?

If a patient with Crohn's is considering a new biologic medication, of which I've taken many, if I disclose my experience with these medications, including my own concerns about side effects, will this help normalize the patient's experience and generate a discussion of pros/cons or will they pick up on any biases I may have no matter how careful I am with my words?

You get the idea.

I can't really say how often I disclose versus not, I'd guess it's about 30% of the time I do.  That means 70% of the time I keep my status on the down low because it's just not appropriate with that particular patient. But in the back of my mind I will wonder if they've seen our social media posts or found information on the Google, and if they know.  

Then there are my peers on social media, other health psychologists, social workers, dietitians, and physicians who know my status.  What do they think?  Do I offer a unique perspective as both patient and professional?  Or does my patient status automatically cloud my clinical judgment and perspective?

I suppose the point of this blog entry is there's a hell of a lot behind disclosure as a therapist.  It's something to reflect on often, and accept you're never going to get it perfectly correct.  But I accept my dual role and will continue to share and speak up about my illnesses on social media and other patient and professional events where I deem it to be appropriate.  I feel like it'd be wrong not to at this point.

Fade out to Johnny Cash.....