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

Saturday, June 9, 2018

Everyone Can Fall Down the Rabbit Hole

5:01 AM Posted by Tiffany Taft , , , , , ,
A few months ago my 3 year old son uttered the words, "I hate you, mommy."  It was after I yelled at him for doing something wrong, which I've long forgotten what exactly the source of our exchange was. But I certainly can remember those words. I can hear them in my head if my brain decides, at random moments, to replay them.

My intellectual, clinical psychologist brain can explain this for days. He's 3, he doesn't know what he's saying, he learned the word hate somewhere else, presumably at preschool, as I discourage its free use in our house. He's using it to express his anger not his true feelings toward me because once he self-regulates (psychobabble for calms the F down) he tells me he loves me.  Blah blah blah.

Regardless of all that knowledge and shit I have from too much education, those words destroy me emotionally.  Maybe they hit me harder because of my profession because my head goes to all the subsequent pathology he'll surely go on to develop due to my shit parenting. And if my brain decides to mess with me and replay them, usually in a convenient scenario like on the bus, it's impossible not to cry.

My training in cognitive behavioral therapy (CBT) tells me to reframe my thoughts, examine the evidence, accept the reality that my 3 year old doesn't hate me.  Things I teach people almost every day to help manage their anxiety or depression. I'm a fucking expert at CBT.

Yet I can't "CBT" my way out of that one.

In the past week, 2 celebrity personas opted to take their own lives. It's brought mental health and its treatment back into the national discourse.  Why it takes a mass shooting or celebrity suicide to make this happen is beyond me.  Unfortunately, none of these events change the fact that we have an abysmal mental health system that continues to be gutted of resources at every opportunity.  And this, at least in my home state of Illinois, is one trend that is truly bipartisan.

The suicides of Kate Spade and Anthony Bourdain also have spurred reminders of the existence of crisis hotlines. I don't know how many tweets and retweets I've seen, and it's all well and good to remind us there are dedicated people out there just a phone call away. But, like the inevitable "Thoughts and Prayers" that come after a major tragedy, this really doesn't open up the conversation in the way it needs to be.

This blog post would be nauseatingly long if I got into all of the nuance of this topic, so I want to try to get my thoughts into some bullet points, because who doesn't like bullet points?
  • Instead of saying "mental health" use the actual language of the diagnoses we're talking about. And not just saying depression or anxiety or bipolar or PTSD, as these are somewhat arbitrary labels we like to slap onto people's lived experience. If you've never experienced depression, ask someone who lives with it what it feels like. What their asshole brain likes to tell them at 2 am after 2 straight weeks of insomnia. How everything you once enjoyed has a shadow cast over it making these things seem like the biggest waste of time, or pain in the ass. We're too clinical about "mental health" in our conversations, so those not living with depression or anxiety or schizophrenia don't know what it feels like, making it easy to dismiss or judge because "there's no way I'd ever get depressed." But when you break it down, we've all had some symptoms of depression at one point or another.

  • If a loved one is depressed or anxious, try not to say stupid shit. And realize even the most well-intended things you say, that you think are on point and would totally help you, might make your loved one feel worse. Before you offer advice, simply listen and reflect on what they're saying. Ask them what helps them feel better, and if they say "nothing," that may very well be true at that given moment. Check back with them often but give them some room to breathe, too.

  • Don't be afraid to talk about suicide with someone feeling suicidal. You're not going to convince them to actually go through with it. Ask them why they feel hopeless (this is the number one predictor of someone getting to a suicidal state). Ask them for reasons why they wouldn't go through with it (this is a huge predictor of why someone would not commit suicide). Don't freak out on them and call the police or haul them off to the ER, unless it's REALLY clear they're in imminent danger to themselves. While we want to keep people safe, depending on the ER, it could make things worse.

  • Understand that even people with in depth training on how to treat depression or anxiety can fall down the same rabbit hole, and all that training won't always pull them out of it. So if you've tried CBT or DBT or CPT or ACT or any other acronym we've come up with in psychology and it's been really really hard, or didn't work, or maybe kinda worked - you're not broken, you're not a failure, the treatment isn't bullshit. It's just really hard and kinda imperfect.

  • Even if your loved ones aren't depressed, check in on them. Invite them out for a cup of coffee or to come over and watch The Matrix trilogy, fully recognizing that the third installment will be a couple of hours of your life you'll never get back. Send them a random card in the mail or some flowers with a funny note. These gestures will do much more for us as a society, and our mental well being, than retweeting a suicide helpline after a celebrity death.  But absolutely do that, too.

--Dr. T2

Tuesday, May 1, 2018

You Should Totally Meditate

4:26 AM Posted by Tiffany Taft , , , , ,
So, have you tried meditation?  Because it's AMAZING.  It's a simple and effective way to fix essentially any problem you have.  You just need to breathe and clear your mind and your issues will simply fade away.  That's all there is to it!  Just breathe and clear your mind and your issues will vanish.

Can't concentrate?  Meditate!

Got pain?  Meditate!

Falling behind at the tech office?  Meditate!

Failing your class?  Meditate!

You name it, meditation can fix it.  And it's EASY.  Just ask anyone who's tried it.

I've asked people who've tried it. Turns out it's not so easy, it doesn't fix everything, and many people give up on it too soon because they feel like they can't do it.  But if you Google "meditation benefits" you get 500 health stories about how good it is for you and how you're missing out if you don't meditate on the regular.  Yet very few of them actually get into the weeds of learning this skill.  

That's right, meditation is a skill.  

I recommend relaxation to every person I see (with a couple exceptions) and meditation falls under the "relaxation" umbrella, obviously.  With how mainstream meditation has become, most people have at least heard of it and I sometimes get a blank pause or subtle (or not so subtle) eye roll: 

"Yeah I tried that and it doesn't work for me."

When I dig deeper, the vast majority of the time people a) gave up after about a week, b) didn't have any guidance, c) were under the idea that meditation is simple and rather natural, you just need to tap into it, then felt bad about themselves when they couldn't, or d) started it during a peak shit show in their life.

Of course it didn't work.

Meditation has been around for a couple thousand years now.  There are people who dedicate their entire lives to perfecting their ability to reach a state of Zen mastery.  Roll in the United States with our quick, easy, fad-based solution process and we bastardize the whole thing.  Kind of like Yoga.

Seriously, hot yoga?  WHY?

When I broach the topic of having my patients learn relaxation, including meditation, I use one of 2 metaphors:

If you hadn't run a mile in your life and I sat here and said "ok what I want you to do is go home and tomorrow run a marathon" you'd think I was out of my mind.  It's the same thing with my asking you to learn these relaxation skills without any time or training.

Anyone suggesting that you can simply go meditate, especially when you're feeling extra stressed, is like me saying "hey, you never bench pressed more than 5 lbs?  Here's 300.  Let's GO!"

People seem to like those analogies, so I'm sharing them with you.  I'm also going to share some other tips about getting started with a relaxation routine.  Because I do think regular relaxation, whether it's meditation or some other form of mind-clearing-body-relaxing exercise, is vitally important to everyone, but especially those of us living with a chronic medical illness.  

When you're starting out, DO:
  1. Use an app or a YouTube video or recording of someone to guide you through the relaxation.  It's easier than trying to do it on your own.  There are an abundance of resources, just watch out for the weird ones.
  2. Accept your mind will wander.  Usually within about 30 seconds of starting.  And it'll go to random things like "need to buy ketchup" or "remember when you farted in 8th grade algebra? THAT was embarrassing." This is expected, normal, and should subside after a few weeks of regular training
  3. Pick a normal "down time" for you.  For most, this is in the evening before bed.  This is also a time when some people get more anxious because they start reviewing things when the distractions of the day are over.  There's no right time to practice, so find what works for you.  Preferably not while driving 80 mph down the expressway, though.
  4. Practice at least 4 times per week.  Daily is better, but I realize we all have shit to do.
  5. Be aware you might notice something called "rebound anxiety" which is normal within certain degrees.  This is usually a sign you're more of a shallow, chest breather so when you switch to deeper, belly breathing it feels unnatural.  This will go away with practice.  If you feel immense anxiety or panic, that's a different story but is very rare (affects less than 5% of people).  Seek guidance from a professional if this continues to happen.
When you're starting out, DON'T
  1. Only try to use relaxation exercises during times of peak stress.  Trying to deep breathe, when you don't regularly practice deep breathing, in the middle of a panic attack isn't going to help and could make the panic worse.  If your life is constant stress, try to find times when it's even slightly lower to practice. 
  2. Give up after a few tries because it feels like you can't get into it.  The odds are rare that you can't get some benefit from regular relaxation.  Even if you can't be a Zen master, taking stress down even a couple pegs is good for you.
  3. Assume meditation will fix [insert problem] immediately.  It may not fix what you're trying to fix much at all.  But it will likely show benefits perhaps in places you didn't expect.
  4. Get hung up on "doing it right" especially if you have a few practice sessions where you barely relax, if at all.  There may be nothing more ironic than worrying about relaxing.  Let any practice sessions go that don't do much and try again the next day.
The good news is after a month or so, meditation will feel rather natural and easier than when you started.  You may be able to relax more quickly, just by clearing your mind and taking some deep breaths for a few minutes while looking out the window at work or school.  This, to me, is the whole point of all the training you do.  You practice practice practice so when your boss yells at you or your kid's teacher calls to tell you little Johnny pulled the fire alarm, you can easily calm yourself down because meditation won't be a foreign idea to your body.  It's supposed to be portable and subtle enough to do almost anywhere, any time. 

The other good news is actual structural changes take place in the stress centers of your brain after about 8 weeks.  I liken this to the Hulk shrinking down to Bruce Banner. These changes endure even if you stop meditating for a while. And if you start up again after a long break, it's easier to get back into it than when you started.  Kinda like muscle memory.

However, I'll share my last metaphor I use regularly with you.  You don't stop brushing your teeth after you go to the dentist and they say "No cavities!" So why would you stop meditating after your stressful life event is over?

I like metaphors.

I also like good technology to help make this easier.

If you're looking for an app to use, I recommend these but there are many other good ones.  Some are free and the paid apps all have a free trial period before you commit:
  • Stop, Breathe, Think
  • Mindfulness Coach (By the Dept. of Veterans Affairs)
  • Calm
  • Breathe2Relax
  • Buddhify
  • Headspace
Happy meditating!

--Dr. T2

Friday, March 30, 2018

The Long Shot

5:31 PM Posted by Tiffany Taft , , ,
I don't even know where to begin as my head is still spinning with the news I received today.  So I'm just going to put it out into the ether:

Entyvio (vedolizumab), which I started for my Crohn's disease about 6 months ago, did what no other approach has:  cleared my eosinophilic esophagitis. 

But wait, isn't Entyvio a drug for inflammatory bowel disease?  Yes.

Is Eosinophilic Esophagitis a type of inflammatory bowel disease?  Nope.

Are IBD and EoE related at all?  As far as we know today, no.  There are very few overlapping cases.

So WTF happened?

Without getting into the biomechanics of a drug that's way over my pay grade in medical understanding, my gastroenterologist had a theory that the way Entyvio works would block the cascade of eosinophils (a part of your immune system, a type of white blood cell) through it's magical way of selectively keeping my immune system from attacking my digestive tract.

She was fucking right.

Since being diagnosed with EoE in early 2016, I have never had a clear pathology report from an upper endoscopy.  There have always been eosinophils in my esophagus, the lowest being 20 per high power field (aka under the microscope) and most recent being 30 per high power field.  Elimination diet reduced the count but never got me below the cutoff of 15.  In a normal person, there are 0 eosinophils in your esophagus.

Fast forward to yesterday, when I finally and begrudgingly agreed to undergo an esophageal manometry.  A test not for the faint of heart or of strong gag reflex.  Having a few rough gos in the past with tubes up my nose and down my esophagus, I was actively avoiding this test for over a year.  The test measures how well your muscles in your esophagus work in the rhythmic way they should (i.e. peristalsis).  In EoE, peristalsis can get screwed up and I had symptoms that suggested screwed up peristalsis.

Or "Ineffective Peristalsis" as the manometry showed.  Nothing too heinous.  My esophagus is lazy, I don't know.  It's not achalasia, which was the big rule out.

While she was in there, the doc took more biopsies to see where the EoE was.  Knowing this would happen, I cheated like an Amish teen on Rumspringa and ate all the things I shouldn't eat for the past month.  I had real bread.  And soy lattes from Starbucks.  And peanut butter.  And almonds.  And beer.  All. The. Things. 

And it was a magical month.  A month where I noticed something odd:  the usual horrible burning in my esophagus when I'd cheat in the past didn't happen nearly as often or as intensely.  However, I'm so cynical at this point with my health I chalked it up to me imagining things. But my mind went to the "what if" of the Entyvio hypothesis. 

GI doc:  "Your biopsies are clear."
Me:  "Wait, clear?  As in zero eosinophils"
GI doc:  "Correct"
Me:  "Was it..."
GI doc:  "The Entyvio, it has to have been."
Me:  "Does this mean I can go off the diet?"
GI doc:  "Slow your roll, Taft. But you can loosen it up a bit."

This is huge news for me.  It could be huge news for people with EoE.  I'm a single case, but the long shot theory my GI doc posited last fall seems to have landed true. Could Entyvio be a treatment for patients with EoE, which currently has zero FDA approved drugs?  A 2015 article suggests that it could work in EoE, but it hasn't been investigated to my knowledge.

Maybe a long shot, but maybe not.


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.