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

Friday, August 3, 2018

Hey Guess What? There Are Mental Health Concerns Other Than Depression and Anxiety

5:13 AM Posted by Tiffany Taft , , ,
Greetings! This post may come across as my being bitchy or complaining about something important, especially in the critical advances being made in integrating mental health into the understanding of and care for people living with chronic medical diseases. People who know me well would never describe me as bitchy. Ok, they might.

But, if I get one more fucking paper to review that studies "Anxiety and Depression" in patients living with inflammatory bowel disease (IBD) I'm going to start yelling.

Or maybe I'm yelling now. Into the ether via a MacBook screen and drinking a mug of what's really 2 cups of coffee, let's be honest.

Hear me out.

I've been one of the biggest proponents of incorporating mental health into IBD patient care. Since the early 2000s, my sensei master, Dr. Laurie Keefer, is doing amazing things. First at Northwestern and now in New York at Mount Sinai managing their IBD patient medical home. As is my partner in crime, Dr. Megan Riehl at the University of Michigan who started their behavioral medicine program in GI a few years back. Dr. Sarah Kinsinger, Dr. Sarah Quinton, Dr. Anjali Pandit, Dr. Brad Jerson, Dr. Miranda Van Tilburg, Dr. Jim Kantidakis. I can go on and apologize to those I've left off the list. But blogs are supposed to be short and I'm not very good at that rule.

Disclaimer: I, in no way, speak for any of them.

My point is we, and other mental health providers across the world, have fought hard to make mental health happen in IBD. We've had to fight hard because unfortunately our predecessors in psychiatry kinda fucked things up with the whole "lobotomy for UC" thing back in the 1950s. Patients, patient groups, and even gastroenterologists have been leery of mental health talk up until more recently. Now, it's being embraced more and more and I couldn't be happier.

But.

Doing a study on the presence of "anxiety and depression" in IBD is not novel. If I check the PubMed there are 366 papers on the topic.  The good news is we've come from 1 paper in 1983 to 42 published so far in 2018.  FORTY TWO!

Image Source: Groundhog Day, Columbia Pictures (Meme-ified)
Circling back to my yelling.  Why do we keep doing studies on anxiety and depression in IBD?  Surely in 366 papers we've kinda figured this out?  We've repeatedly shown depression and anxiety screw things up (symptom experience, treatment adherence, quality of life, social function, etc.). And this isn't unique to IBD. It happens in EVERY disease. Hell, depression and anxiety screw things up for anyone experiencing them. That's why they're, you know, a diagnosis.

So WTF is going on?

1) Why wouldn't some patients with IBD experience anxiety and/or depression, and why wouldn't it be slightly higher than the general population?  We're talking around 20-30% of IBD patients having this issue, compared to around 10-15% of people not living with IBD.

2) The reality is more IBD patients experience what we'd call "sub-clinical" anxiety or depression. So if a person showed up in my office with IBD, which they tend to do, and I did a structured clinical interview for the DSM-5, more would only check a few boxes for anxiety or depression than those who I would diagnose as clinically depressed or anxious.  And this is what most of us in the GI psychology business see.  Repeatedly.

3) The number one mental health diagnosis I use in my clinical practice is "Adjustment Disorder with Anxiety."  Which is psychobabble for hey, living with IBD is hard and you feel kinda worried or stressed out about it.  You don't have an anxiety disorder.

I'd like to propose that by constantly using the terms "anxiety and depression" in the vast majority IBD mental health research titles, we're doing a disservice to patients.

Important: This is in no way a diss to people with anxiety and depression diagnoses. And I realize to destigmatize a condition we have to talk about it over and over and over. This is to talk about the complexities of incorporating mental health into chronic medical illness, which is still a bit of a mine field. 

First, mental health is stigmatized. It just is. I wish like hell it wasn't but we have to operate in the realities of society. So when patients keep seeing clinical terms used it's going to turn them off to talking about their mental health because they don't want to be labeled as "crazy" because their MD will dismiss them, or have a depression diagnosis in their medical record, for example.  It'd be cool if clinicians didn't dismiss patients who are depressed or anxious, but it happens. I've seen it and I hear the stories.

Second, the vast majority of patients with IBD aren't depressed or anxious. They might have some symptoms, some difficulty adjusting, all really normal in the context of what the average IBD patient deals with. But they've figured out how to navigate this shit disease (pun intended). Why aren't we talking about that?  Oh wait, Dr. Keefer just did in her Nature Review on the role of resilience and Positive Psychology in chronic GI illness (Abstract Here).

Third, there are MANY other areas of mental health concern that IBD patients face.  Thankfully these have all been investigated (some more than others), but on a much smaller scale than anxiety and depression. I wrote a review of these last year (Abstract Here).  If you'd like a copy of the article, please contact me via Twitter (@OPBMed).  These include, and are not limited to,
  • Eating and food-related concerns, including disordered eating habits
  • Sleep issues
  • Fatigue
  • Trauma, post-traumatic stress or post-traumatic stress disorder due to illness experiences
  • Concerns about treatments
  • Body image
  • Intimacy and sexual health issues
  • Pregnancy and breastfeeding
  • Infertility and child bearing concerns in general
  • Stigma
I should add, there's barely any research in racial and ethnic minorities or patients who identify as LGBTQ.


So, to any of my peers reading this, consider it a free list of research ideas to move from the "anxiety and depression" Groundhog Day-esque feel of IBD mental health research.

To my fellow IBD patients. We're listening and we continue to push forward with really understanding the positives, negatives, and all the shit in between for life with IBD.

--T2

Monday, July 2, 2018

That Time I Became Allergic to Benadryl

7:10 PM Posted by Tiffany Taft , , ,
Hey, what's up?  Enjoying your summer?  It's been a pendulum swing between 98 degrees with 6000% humidity and 65 and raining here in Chicagoland. Climate change?  What?  Nah.

Today I'm going to change gears from my usual digestive system talk and move on over to a different thing - allergy.  In my repertoire of medical doctors is an allergist/immunologist, whom I was sent to when my gastroenterologist suspected I had eosinophilic esophagitis. 

Spoiler:  I do.

A very recent study, like last month recent, suggests that EoE is a "late manifestation of the atopic march."  The atopic march?  When did that become a thing and why does it sound kinda ominous, especially given today's political climate?

Thankfully it's simply the tendency for a person who develops some sort of an allergy to go on and develop other allergic conditions as they age.  Like a fine wine.  Typically this starts with eczema as a baby, which I have no idea if I had.  I don't think I did, but my brother had eczema as a baby so I'm sure I'm somehow guilty by association.  I did, however, develop hay fever as a kid, then an allergy to cats as a teenager, which eventually evolved into adult onset asthma in my 20s.  

The right breed of cat can send me into a serious wheeze today. 

Around the time I figured out I was allergic to cats I underwent skin prick testing for other allergens. I'm allergic to trees. And grass. And mold. And dust mites. Earth. I'm basically allergic to Earth.  Thankfully, prescription grade antihistamines became more accessible when they received the OK from the FDA to be sold OTC. And I cruised into my 30s on periodic zyrtec or allegra.

In 2013 I got pregnant with my my first, and I also got a rash on my foot.  I assumed it was fungal because what the hell else could it be?  It would flare up from time to time and I applied anti-fungal creams like it was my job for years.  Literally, years.

It was not fungal.

About a year before the EoE stuff started, and 5 years into my "it's gotta be fungal" foot rash, I brought it up to my gastroenterologist as a possible side effect to my Crohn's medications.  Certain medications, anti-TNF drugs to be exact, can cause psoriasis.  Which is funny because they're also used to treat psoriasis.  It goes to show you the human body will fuck with you at every opportunity.  She referred me to a dermatologist who ruled out the fungal infection and gave me a generic diagnosis of eczema and prescribed me a topical steroid cream to be used as needed.  Cool.

Except the rash didn't really go away.  And it seemed to be getting worse.  Let me break this rash down for a second.  It's itchy AF. Like you want to take a belt sander to your skin level of itching.  Put that on your foot.  I should add this was only affecting my right foot, which confused everybody. Again, body fucking with you.  The problem is, itching this rash makes it worse because it breaks the little blister thingies (technical term) and makes the skin raw and, subsequently, more pissed off.

I WILL ITCH YOU!
But really, picture the most intense itch you've ever experienced and multiple it by 50.

After my second kid was born, so now 8 years into the rash, I heard about a good dermatologist and went to see her for a second opinion.  At first she said she thought it was fungal.  Clearly she hadn't gotten the memo.  But a skin biopsy revealed a massive eosinophilic infiltration to the skin, along with other stuff that indicated an allergic response.  I went on to get patch testing and 3 allergens were found:  shellac, a disperse blue dye, and sorbitan sesquioleate.

Sorbitan sesquioleate is one of the main ingredients in the steroid cream I'd been using for years.  Disperse blue dye is often used in blue and black fabrics, so most of my shoes and socks were offending to my foot.  Shellac is in nail polish.  Essentially my foot was being attacked from all angles by an army of allergens.  The solution?  Simply avoid any possible exposure to these 3 things.

Anyone know where you can find the ingredients list for shoes?  Yeah, me neither.  Assuming a wardrobe of white socks and shoes that don't have any blue, colors made with blue, or black has helped.  I also received a prescription for a tacrolimus ointment to bypass the steroid cream issue.  Sorbitan sesquioleate is actually in most lotions, so that's cool.

I decided to try a topical benadryl gel we had lying around for bug bites on the small people in my house as it advertises right on the label it's superior anti-itch properties.  Plus, benadryl!  Allergy!  Win!  And man did it work.  Cleared that shit right up. It became part of my nightly regimen to keep the foot happy and offset any possible allergen exposures during the day, because let's be real I'm never going to figure out the shoe/sock thing 100% of the time.

Over the past couple of weeks I've noticed the rash has returned and isn't responding as it once did to the mighty benadryl gel.  It crossed my mind a while ago "What if you get an allergy to the benadryl?" which I promptly shooed out of my brain because how can anyone become allergic to the drug everyone takes when they have an allergic reaction?  Seriously, brain, you go too far.

But my researcher brain decided to investigate. I started with Dr. Wikipedia which listed the most common sources of allergic contact dermatitis.  

"Topical anesthetics – such as pramoxine or diphenhydramine, after prolonged use." There are a handful of studies on Pubmed on the topic as well, so Dr. Wikipedia is vindicated.

Diphenhydarmine is the primary ingredient in benadryl gel.

I'm allergic to benadryl.

Ok, I'm not 100% sure and will test it out by eliminating the gel from my regimen, then trying it again to see if I react.  But the odds seem high.  I went on to look up allergy to tacrolimus and that's a thing, too.  I feel like it's only a matter of time and prolonged use of that treatment until my foot says, nah, you're done.

These allergies never reverse themselves.

I don't know whether to laugh or cry. So I wrote a long blog instead. Thanks for reading.

--Dr. T2

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.

Hot.
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.

--T2

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.

--T2

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)_/¯

--T2