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

Wednesday, December 7, 2016

13 Reflections on 2016

4:54 AM Posted by Tiffany Taft , ,
2016, what a year eh?  The Cubs won the world series (!!!).  Donald Trump was elected president (???). We lost Prince and David Bowie and Mrs. Brady :( :( :(. People are saying it's the worst year yet.  But people say that every year, probably since the inception of calendars.

I'm going to go out on a limb that 1665 or 1863 or 1942 were worse years than 2016.  By a hair.

I don't like to bitch about an entire year because I know that we humans are programmed to filter out the positive and focus on the negative.  It's supposed to be protective, keeping us in tune with our environment so we don't get eaten by a predator. But in our non-predator based world this mechanism often just turns us into a bunch of Negative Nancys.  Nancies?  Whatever.  Nancy has a bad rap, anyway.

Today is the last day of IBD Awareness week, 2016.  I've enjoyed following all of the stories from people living with Crohn's disease or ulcerative colitis via social media, including inspirational stories and raw, post-surgical stories complete with pictures to show us just how awful these diseases can be.  I think we need these polar opposite stories, and everything in between, to not only lift us up with hope but also let the world know just exactly what this f-ing disease can do to a human being.

I'm excited to get to meet several of these IBD patient advocates on Saturday at the Advances in Inflammatory Bowel Disease conference in sunny Orlando Florida.  I'll be moderating a panel discussion on patient empowerment.  And I get to see my mentor of the last 12 years who moved to New York in 2016 to run the IBD psychosocial program at Mount Sinai in NYC.  AND it's not going to be 25 degrees with snow on the ground.

Plus, room service.

My participation in IBD awareness this year has been less than stellar and certainly lower than in previous years.  I did make a poster via Crohns and Colitis UK:


I'm not sure why I didn't do as much, but I'll go with it's just part of the natural ebb and flow of living with a chronic disease.  Sometimes you're all in and sometimes you just want to put it on the shelf for a little while and not look at it.  You can see the latter is the case based on my facial expression.

Plus, this past year I've been forced to focus on the upper parts of my digestive tract and figuring out this eosinophilic esophagitis thing.  As of today, I'm still on an elimination diet with a PPI medication.  I'll have my 4th upper endoscopy in the next month or so to make sure all the eosinophils are gone and the ol' esophagus is as smooth as a baby's ass. With no diaper rash.

That's such a poor visual. I'm sorry.

So if 2016 is a dumpster fire of a year, then I'd like to look at both the negative and positive that I've experienced this year.  The bags of trash and the marshmallows, if you will. You can decide which is which.

1) We got a puppy.  Her name is Annabelle and she's a Plott Hound mix who showed up in the local humane society from down state Illinois.  Evidently the Plott Hound, a breed of German descent, is the official dog of North Carolina.  Who knew?  She's better at not peeing on the floor but yesterday she chewed on a chair leg for about half an hour before anyone noticed.

2) First inpatient hospital stay is under my belt.  A truly eye-opening experience that showed me how helpless you can feel while at the same time showed me I have an amazing gastroenterologist who truly has my back.  That provides a sense of ease that I can't really put to words.

3) I lost 15 pounds from my symptoms and subsequent elimination diet.  Screw Slim Fast or Atkins.  Want to lose weight? Eliminate soy, wheat, barley, peanuts, almonds, tuna, sesame, celery, and apricots from your diet for 2 months.  Then take out dairy, eggs, all tree nuts, all fish and shellfish for another 2 months.  You're welcome.

4) I discovered I have a secret admirer.

5) I met with clients living with cancer, IBD, IBS, MS, mast cell disorder, EoE, congenital heart defects, obesity, post-traumatic stress disorder, fibromyalgia, vulvodynia, bipolar disorder, cyclical vomiting, GERD, major depression, people hoping to undergo bariatric surgery, people who had bariatric surgery and it failed, and others, over 1,000 times. 

6)  I published a few research articles.

7) We have 2 post-doctoral fellows training with our practice.  One just filed her licensing paperwork and one is 3 months in.  More health psychologists!

8) Got my first iron infusion.  It worked in that it reversed the iron deficiency anemia.  It failed in that I did not become Wolverine.

9) Managed to stay compliant with Cimzia for a year, which for me is a victory because I sometimes like to go off my Crohn's medications.  Bad news is it's wearing off (probably because I've gone off and on the drug for the past 6 years because of pregnancies and being stubborn). I had to switch to 1 shot every 2 weeks rather than 2 shots once a month.  So far that strategy is working and maybe I'll get another year out of it.  Nobody knows and I'm not asking.

10)  I did not win the lottery.  I didn't play, either.  Suppose those 2 things are related.

11) The Cubs won the world-fucking-series!!!!!!!!!!!!!!!!!!!!!!!!

12) A close friend of mine with Crohn's had her 4th fistula surgery.  It worked but then at her follow up appointment with the surgeon they found another one.  Demonstrating just how cruel IBD can be.

13) In 23 days I'll have completed my 41st trip around the sun.  I'm alive.  The rest is secondary.

Happy 2017!

Monday, November 7, 2016

Oh, Hey!

1:10 PM Posted by Tiffany Taft , ,
Greetings, blog readers.

You may or may not have noticed, but our blog has been deactivated for the last few weeks.  I'd like to say it was because we were overwhelmed by the simultaneous anxiety and ecstasy of the Cubs playoff run and World Series victory.  Sorry if you're in Cleveland and are reading this.  Maybe next year?

Alas, it was for a different reason.

I don't want to get into it too much, but let's just say being a semi-public figure while being a patient is a weird, weird place to live sometimes.  Don't get me wrong, I'm not even implying I have any sort of celebrity status.  But I'm out there enough to show up on many Google search hits (that must count for something, right?)  When I put personal information out on this blog, as I have the past year with my experiences with EoE, it creates a vulnerability.

Some people in the world have difficulties with maintaining boundaries. Combine this fact with the aforementioned vulnerability and it can cause one to take a step back to evaluate their online presence, blog included.  But, after some reflection, I decided not to recoil from this weird, weird world I live in and continue to bridge these two identities as well as I can.

It felt wrong to run away.

We have an orchid in our office that has been consistently blooming for 2 years.  I'm no botanist, but my previous orchid experience tells me this is an anomaly.  Hell, other orchids in other rooms in our office suite have come and gone, sometimes rather quickly.  Not this plant.  I've aptly named it "The Highlander" because a) I'm old and like to reference movies from the 1980s and b) anything that refuses to die in my life is named this.  I once had a plecostomus who jumped from a fish tank multiple times, survived a tank water heater mishap when all the other fish died, and went on to live for years.  Highlander fish.

This orchid has sprouted a new stem even though the current stem has 3 blooms open and another coming to life.  This is the most resilient damn orchid I've ever seen.

If this plant can keep going, so can I.  But if any of you decide it's a good plan to call me at 5 in the morning to wish me good health, don't.  Boundaries.

Highlander Orchid
--T2

Saturday, October 1, 2016

The Most Amazing Breakfast

6:19 AM Posted by Tiffany Taft , , ,
My posts have been all negative Nancy lately and that's not how I am usually. I swear. Maybe you've seen that thing going around social media to sum up your persona via 3 fictional characters.  Mine looked like this:

Pippi Lucille Gibbons. So let's shake things up; how about some good news on this fine autumn Saturday?

2016 has been an interesting year for health.  I was looking at my MyChart account the other day and noticed I'm coming up on 1 year since my first upper endoscopy that put me on this EoE with IBD path. 365 days. Time flies when you're having fun! 

If I took the time to add it all up I'm pretty sure I've amassed between $7 and $7 million in medical expenses since then across 8,456 doctor's appointments, tests, medications, and one very enlightening inpatient stay.  Managing my health has literally been a part-time job; except I don't get paid. 

This whole mess keeps evolving and blogging about it has helped me process it all.  Plus, I'm keeping a record of my experiences that I can look back at when I'm 80.  Thank you to anyone who reads these.  I'm sure it's been enthralling for you.  Like the first season of House of Cards.  Or C-SPAN.


Onward! Positivity!

This morning I had the most amazing breakfast:  Udi's gluten free bread, toasted, with REAL cream cheese and some cucumber slices.  Whoa, right?

If I read that sentence a year ago I'd have thought the person writing it was a bit off.  Gluten free bread?  You mean a dried out brick made to look like bread?  Surely you jest.  Now cream cheese is a gift from the gods and cucumber is a staple of my diet.  But even those I wouldn't deem amazing. This breakfast isn't showing up on the menu at Alinea.  Or even Denny's.

Side note:  If you've never heard of Alinea, a restaurant in Chicago, or the story of its chef, Grant Achatz, read this story in the New Yorker.  Or any story about him: a chef that develops tongue cancer and how it propelled him to be one of the best in the world. Truly amazing.

So deprivation is a funny thing, psychologically. 

When someone tells us we can't do something (or have something) we're inclined to want whatever is off limits even more.  Suppressing thoughts or behaviors causes the brain to focus on them quite intensely, resulting in cravings or lying in bed at 3 am endlessly going over that one, possibly snarky comment our boss made in a meeting to us or what a Donald Trump presidency might be like. 


The apocalypse.  It will look like the apocalypse.

Then when we give give up on suppressing our behavior and go back to old ways, we tend to intensify that behavior - something we psychologists call the rebound effect.  This is why the vast majority of diets for weight loss don't work and people often regain the weight plus 10-15 pounds.  The coveted food probably tastes even better than it did before.

Hence my amazing breakfast this morning. 

So the good news is I've put dairy, eggs, fish, and shellfish back into my diet.  Eggs are a big deal because gluten free breads use them, and dairy means cream in my coffee.  And butter, so eating out will be a bit less daunting.  I also realized an error in my allergy testing report where I can, in fact, have buckwheat.  You may be asking "what the hell has buckwheat in it other than buckwheat?"  I'd have asked the same thing before but it's often used as a wheat flour substitute in prepared foods like snack bars or cake mixes.  Pretty much anything made by Enjoy Life foods (which makes truly tasty stuff) contains buckwheat.

Having less on the off-limits list is huge. YUGE! It's truly great. The greatest, folks.  Seriously. Couldn't be happier.

Not eating soy, wheat, peanuts, tree nuts, barley, celery, sesame, and apricots doesn't even seem daunting to me at this point.  Maybe the dairy/egg/fish/shellfish period was a good thing in that now the diet based off my allergy testing seems like cake.  Amazing, gluten free, buckwheat-laden cake. 

--T2


Wednesday, September 28, 2016

Side Effects May Include...

4:50 AM Posted by Tiffany Taft , , , ,
I'm old enough to recall the glory days when it was illegal for pharmaceutical companies to directly advertise to consumers on television.  The first drug commercial I remember is the one for Prozac, with the little animated circle-person looking all sad and being followed by a rain cloud.  Then he/she takes a pill and befriends a happy blue bird.

Zoloft (not Prozac) Guy, circa 2003
My Google search informs me that this was, in fact, not an ad for Prozac but for Zoloft.  So much for that, Pfizer.

Now it seems like you can't watch TV without coming across a drug commercial.  In parallel with people driving in convertibles, sitting in bathtubs in flower fields, or Mike Ditka throwing a football through a tire is a voice-over person listing the potential side effects and risks which always seem to go on for days.

People living with chronic illnesses also live with chronic side effects.  And they live with chronic risk for developing another, sometimes more serious, problem from their medications.  My personal favorite is when doctors start treating the side effects with more medication, which also has side effects.  I realize that this is sometimes necessary, but when you step back and look at it, it all seems a little insane.

My most recent, and 3rd, upper endoscopy showed no real improvement over the 2nd one I had in July.  Some things healed, some new things showed up in both my esophagus and stomach, and the eosinophil count remained the same (> 15 per high power field, which is the cutoff for EoE).

The great news is I got to put dairy, eggs, and fish back into my diet because taking those out did absolutely nothing.  Huzzah!

The bad news is I'm likely going to have to go back onto a high dose proton pump inhibitor (PPI) to treat this stuff. I'm likely experiencing EoE and Crohn's disease in my stomach, which is a rare place to have Crohn's show up so there isn't a lot of knowledge about it.  

I'm all about being this special snowflake.

You may have seen in the news new research about the risks of chronic PPI use.  When medical findings are picked up by the media, they're usually over-hyped as either "WE FOUND A CURE!" or "ANYONE ON [MEDICATION A] IS GOING TO DIE!"  Slow your roll, media.  It's never that straightforward - which is good and not so good.

PPIs were once assumed to be these incredibly safe, low-risk medications that could eradicate gastroesophageal reflux disease in the vast majority of people who took them.  To say they were considered miracle drugs might not be far fetched.  PPIs were so successful that their use expanded to even those without a definitive GERD diagnosis and eventually they were approved to be over-the-counter.  So literally anyone who experiences heartburn a few times can hop on over to the store and buy an unlimited supply of PPIs.

Side note:  One of my first mentors in GI, Dr. Michael Jones, wrote a nice piece on heartburn and how our lifestyles impact its presence in the Los Angeles Times in 2013.

The PPI party went south when someone pooped in the pool (my 7th grade literature teacher would be so proud of that alliteration) - I mean people started having significant side effects.

Doodie! Image credit: "Caddyshack"
Major risks/side effects of PPIs include:  osteoporosis, pneumonia, C-Diff infection, iron deficiency, and vitamin B12 deficiency.  More recently, long term PPI use was associated with kidney failure and dementia.

Cool.

The odds of any of these are small, so let's not all have a heart attack about these studies.  However, the consensus among gastroenterologists who know much of anything is that PPI use should be limited and only for people who actually need them.  The days of throwing a PPI at someone who mentions heartburn once are hopefully nearly over.

Turns out I'm one of those people who actually needs them.  The treatment for EoE like mine is 40 mg daily PPI.  The treatment for stomach Crohn's is also a PPI in addition to the anti-TNF medication I'm on, which may not be working so well.

Also turns out Crohn's disease causes bone loss, iron deficiency, and vitamin B12 deficiency and these are all things that I have been diagnosed with.  I've had osteopenia and low B12 since my diagnosis in 2002. My recent hospital stay identified the iron deficiency and I have my first 2 iron infusions starting in early October.  I hope side effects of those include Tony Stark-itis.

I already have a bit of his personality.  Image credit: "Ironman"
My next appointment with my gastroenterologist is in about a week and we'll go over the plan and discuss at length my taking a PPI, which she wants and I don't want.  The results of this endoscopy tell me I'd be foolish to not take the PPI but the side effects that include conditions I already have make me want to run away and hole up on an island like Tom Hanks.

Looking real appealing right now.  Image credit: "Cast Away"
Can I have any more movie references in this post?  Clearly I remember films better than I remember antidepressant commercials.

--T2



Saturday, September 10, 2016

8 Things I Learned While Inpatient

3:19 PM Posted by Tiffany Taft , ,
Hi.  This is long.

So I've had Crohn's disease since 2002. Unlike many of my peers, I've never had to go into the hospital. The only surgery I've had was done on an outpatient basis. My symptoms have never gotten to the this-is-super-bad level. Needless to say, I've been pretty fortunate.

Last week I had my first inpatient hospital experience, aside from having my kids. I didn't go in because of Crohn's disease, but because of a complication likely related to my medication. I'd been feeling really run down with a low grade fever for days but had no other symptoms other than some minor Crohn's activity that I barely considered a problem. My medication, Cimzia, has specific instructions not to take if you have an infection and I was due for my shots. I texted my gastroenterologist and she recommended I get blood work to see what was up.

So I went and did and saw what was up, which was that my total white blood cell count and neutrophil (the part of your immune system that fights infection) count were really low (White blood cells were 1.8, minimum of 4 and neutrophils were 670, minimum of 1900). My doctor called me and said "get yo ass to the hospital." Ok, maybe not in those exact words. In my almost 3 days at what I would say is a highly regarded, university based hospital, I learned a few things that I'd like to share with you.  

1. There are excellent physicians and really really shitty physicians.
The hospital I was in is a teaching hospital, which means in addition to the attending physicians you see a steady stream of residents, fellows, and medical students. All of whom ask you the same questions and regurgitate relatively the same answers. After about a day I noticed this pattern, or script, that all the doctors I saw seemed to be getting their words from.  Any attempts on my part to push them away from this script were met with condescending corrections. I felt like Phil Connors in Groundhog Day.

Drunk is more fun.
I was admitted by my gastroenterologist, who is a phenomenal doctor. I have a bit of a weird relationship with her as she's my doctor, we collaborate on research together, and we've gotten together as friends on a few occasions. Needless to say, I have her cell phone number. I'm pretty sure I'm not her only patient with this number, but as I said it's a weird mix that means I have access to my doctor in ways most people probably don't. We kept in touch via text or call the entire time I was in the hospital. This was a blessing and a curse.

I saw 3 attending physicians: the hospitalist, or doctor in charge of you as an inpatient; the gastroenterologist on call; the hematologist on call. Before I saw each of them, I saw their resident or fellow because hey people gotta learn, right?

The hospitalist was a good guy and did his best to have a conversation with me versus talk to me via the script, although he did correct me that 100F is technically not a fever. 100.4 is a fever. Get it right.

The hematologist seemed to think my condition was NBD. Like, you can go home right now NBD. I realized that she sees cancer patients and I looked relatively well with the exception of the fever and neutropenia, but her response was essentially the polar opposite of my gastroenterologist and the hospitalist. As you can imagine, this messed with my head.

The gastroenterologist on call was amazingly awful in too many ways to list here. By the 3rd day, I refused to see him because he was doing absolutely nothing to help me, rather he was just pissing me off.

2. Doctors put patients in categories to check boxes rather than consider individual variables.
As I mentioned, when you go inpatient the narrative seems to be pre-written based on labs and other test results. Any attempts on your part as the patient to push them away from the script is met with dismissal or cheap explanations that make you cock your head to the side like a dog hearing a high pitched noise.
Me, 75% of the time.
Example: The main reason I was hospitalized was that I had a low grade fever in addition to the low neutrophils. Nothing off the charts, just around 100. When I got into the hospital they started taking my temperature with an ear thermometer and even though I felt exactly the same, the temperature on the thermometer was normal or even low. That seemed so weird to me but I didn't say anything. The temperature readings were being used to guide my treatment planning so they were, you know, kind of important. Everyone was happy I didn't have a fever yet I was telling them I felt the same.

You start to feel a bit crazy.

Day 2 a nurse takes my temperature and it's 97.5. Correctly, she thought that was wrong so we took my temp orally. It was 99.5. We did an experiment with the ear thermometer, testing both ears, and each said 97.5. So we concluded that the thermometer was measuring my temperature roughly 2 degrees cooler than it was. Which meant that I actually had a fever (100.4 kids, remember!) a few times when my temperature read 99 on the shitty thermometer. I brought this up to the hospitalist and he blew it off since even with the adjustment my temperature wasn't THAT high.

Internally I screamed "Then why the fuck am I in here!" Externally I just stared at him with disbelief.

The script had been written.  One does not simply change the script. Even with what seems like important information.

3. In order to bill a visit, a doctor has to listen to your lungs.
Ok, this one I can't prove but at no time did I report or show signs of any type of upper respiratory infection. Yet 98% of the time a doctor came through he/she had me take 4 deep breaths and listened to my lungs.  I can only assume this has something to do with insurance.

4. If you have a chronic illness, unnecessary focus will be placed on that even if that's not why you're in there.
I didn't go in to the hospital because I was having a Crohn's problem. Yes, I was having some symptoms and my gastroenterologist ordered an MRI to make sure I didn't have an abscess or something that could cause a lot of problems with a weakened immune system. But I was admitted because my immune system was nearly non-existent and that's a bad thing if you catch a bug.

The gastroenterologist on call spent an unnecessary amount of time going over my history, all the way back to 2002. But he did it in such a way that I felt like he was actually questioning my diagnosis. He also asked questions about my most recent flare up and treatment last fall, which was managed by his colleague, in a way that implied she and/or I was wrong.  

Then he decided I needed to go on a low residue diet, because that's something important? I questioned his decision and mentioned I was on the elimination diet for EoE so I was already pretty restricted.  Then this happened:

Dr. Shitty: "You can stop that, it's not necessary right now."
Me:  "But I have an endoscopy on the 20th.  I have to follow it closely until then."
Dr. Shitty:  waving his hand with a smirk "It's not necessary.  You need to be on a low residue diet."
Me:  "If I do that I've wasted the last 3 months of my life.  Have you read my chart?"

Say what?
5. Sleep, essential for recovery, is non-existent.
Anyone who has stayed in the hospital knows some sadist decided that taking vitals at 2 am is a good plan. Or timing your IV medication to finish at 3 am so alarm bells go off that could wake up the dead. I did have a private room, so that helped. I can't even fathom sharing a room with another sick person. You'd never sleep.

6. Some people will flat out lie to you.
I'm pretty sure at least 4 doctors lied to me. Amazingly, my gastroenterologist's pager didn't seem to work at all while I was in the hospital. She asked me to ask the doctors I was seeing to call her so she could coordinate my care. Remember, texting going on. The residents would report back to me that she hadn't answered her page; she told me no page had been received. If I had to bank on it, she's not the one lying to me. If I hadn't been texting with her, I would have thought she didn't care enough to respond. Throwing your colleague under the bus is a shitty thing to do.  Telling a patient that their doctor isn't responding is an even more shitty thing to do.  Especially when it isn't true.

7. Even if it's 2 a.m. someone is getting an MRI or CT scan.
I had an MRI at like 9:30 at night. I was taken to some underbelly of the hospital where people are wheeled in and out all night to get scans. There are people who work 3rd shift having people drink barium and injecting contrast and instructing you when to breathe. I had no idea.  They might be vampires.

8. You have the right to say no. 
By the middle of the 2nd day I'd gone from courteous yet blinking with disbelief to assertive bitch.  I assumed the Condescending Wonka meme pose whenever a doctor other than my gastroenterologist was speaking with me.  I was done. 


On day 2, during my GI consult visit with Dr. Shitty and his equally shitty fellow, said fellow tried to correct me when I let her know I knew the results of my MRI from my gastroenterologist. I interrupted and told her to just stop talking, which surprisingly she did.  I can only imagine my face relayed my disdain for her and the attending.

On day 3 I told the gastroenterology fellow, the cool one, to tell the attending I had no reason to see him and he didn't show up.

I don't like having to behave this way but I learned that being courteous and submissive wasn't working.  I knew better than to get bitchy with my nurses, who were actually quite good.  But I found my voice with the parade of physicians.  And while they seemed taken aback by my change of tone, I felt better challenging them and their script than just sitting there and nodding like a bobble head.  I'm just glad I was well enough to do so. 

All I could think about was people who are really sick or those without the access to my doctor that I had.  I also have a medical background.  All of these moving parts, a mish-mash of good and not-so-good doctors, most of which generally don't listen to you.  I felt pretty helpless, I can only imagine how bad that can get.  One silver lining to all of this is that this experience helped me understand what it's like for my clients who go inpatient.  Before, I could only imagine what it was like.

So what the hell happened to land me in there?  Nobody seems to know, but the theory is I picked up some weird virus that nuked my immune system.  I probably caught the virus because of my immune compromised state from my Crohn's medication.  I have more labs drawn on Monday and hopefully I'll have reached the low end of normal.  As of Tuesday my white blood cells were 3 and neutrophils 1090, up from their lowest of 540 the day I was discharged.  You read that right - I got worse in the hospital and they sent me home because I didn't have a fever any more.  Honestly, I was glad to get out of there.  I felt better taking my chances at home than putting up with any more bullshit.

Wednesday I see that hematologist I saw while inpatient to get cleared to restart the Cimzia.  I doubt I'll ever know what virus it was, which is a bit disconcerting.  I'm going to go with zika since that's en vogue right now. 

--T2      

Wednesday, August 31, 2016

When Your Medication Stops Working

10:30 AM Posted by Tiffany Taft , ,
It's 4:48 am as I sit down to write this.  I've been up since about 3 after waking up at 1 for the second night in a row.  This is familiar territory as insomnia is a big warning flag that the ol' Crohn's disease is getting up out of its corner to have another tantrum.  Been here, done this.

Except this time there's a big difference from flare ups of recent memory - I'm being a good patient and am taking my medication.  In the past I would stop my meds due to pregnancy or stubbornness or worry about side effects.  You've seen those Humira commercials right?  May cause cancer, heart disease, or serious or fatal infections.  You know, standard side effect stuff.


Since 2004 I've been on 3 different anti-TNF (tumor necrosis factor) drugs to treat Crohn's:  Infliximab (Remicade), Adalimbumab (Humira), and my latest Certolizumab Pegol (Cimzia).  Remicade and I had a short relationship as I developed an allergy after about 6 months.  This was back when Remicade was the only option for this type of medication to treat IBD compared to today where there are, I don't know, 8 of these medications?

Gastroenterologists LOVE these drugs because they've really worked well for the vast majority of people.  They love these drugs so much that they changed the entire way they approach IBD treatment to start with these once-upon-a-time "drugs of last resort" rather than trying other, less risky medications before going to an anti-TNF - or as they like to call it "Top-Down disease management." 

Go big or go home.

These medications are also very very expensive, which is why my cynical side believes pharmaceutical companies are developing more and more of them.  The 2 shots of Cimzia I received yesterday were $3500.  For one month's supply.  The anti-TNF medications that are given via IV infusion can cost more than $10,000 a dose.  This is where having good insurance becomes vital (are you paying attention anti-ACA people?)

Motivations of pharma aside, these drugs are important and they do really good things.  They've saved lives. But they do scare people because of their side effect potential.  They're rare, but if you get one it could be a major problem.  Like death.

So why am I sitting here in the dark feeling like I got hit by a van if I'm on a miracle drug? Simple:  these drugs can wear off.  Nobody really knows why except the body either gets used to them and finds a way back to what it thinks is normal - what I call the Dr. Ian Malcolm effect, or you develop antibodies like I did with Remicade.


Life finds a way.  Dinosaurs change sex to be able to make little dinosaurs.  Bodies reject foreign molecules. Intestines want to be inflamed.

In July I noticed some symptoms coming back in the last week prior to taking my monthly dose of Cimzia.  I decided to make note but not contact my gastroenterologist because it could have been a fluke.  The symptoms went away within a day or 2 of doing the shots.  Fast forward to this month and my body decided to up the ante and throw in a low grade fever in addition to massive joint pains, loss of appetite, and 5-10 bathroom trips a day.  What, no bleeding?

I bit the bullet yesterday and let my gastroenterologist know what was going on.  Mostly because one of the things you're not supposed to do while on Cimzia (or any of these medications) is take a dose if you have an infection.  The warnings are like the robot from Lost in Space.

Really showing my age with this one.

I have no signs of infection other than the fever.  But I'll get some blood work done later today to make sure that's not the case.  The more probable scenario is the Cimzia is wearing off.  And it's probably wearing off because I've stopped and started it 3 times in my life due to pregnancy, which was advised by my doctor.  What wasn't advised was to not take it for a few years after I had each kid.  That probably led to antibody development that's ruining my party today.

After I get cleared to take it this month, the plan is to spread out the shots to 1 every 2 weeks rather than 2 once a month.  That will probably work for a few months before it just stops altogether.  Then I have to figure out which one I try next.  Kind of like a buffet.  I'm thankful to have options.  When I became allergic to Remicade there was nothing other than a clinical trial for Humira that I thankfully got into and received the medication.

Psychologically, having your medication that keeps you well stop working is difficult.  I made a commitment to stick with my treatment last fall but it looks like my choices the last 5 years probably put me in this situation today.  I can't prove that, this could have happened anyway, but I certainly didn't help the process. I can't go back in time and tell me 2 years ago to suck it up and start the Cimzia again. It's hard to take a powerful medication when you feel well. Plus, it's nice to take a vacation from being a patient. But like everything, there are consequences I now have to deal with. Berating myself won't do anything, so I'm in one-day-at-a-time mode.

On the plus side, since I have little appetite, I don't have to worry about finding stuff to eat since I'm still on the EoE elimination diet until the 20th of September.

See, always a silver lining.

--T2

Tuesday, August 16, 2016

Sweet Home Chicago

2:24 PM Posted by Tiffany Taft , , , , ,
In case you missed it, I live in Chicago.  Well, I live in the suburbs of Chicago again, not far from where I grew up because parents = free child care.  The suburbs are OK, I suppose, but I'm more of an urban gal.  Which is why our practice is located in Oak Park.  Technically a suburb, but the first one just west of Chicago.  You can get downtown via the CTA, or "L", as we like to call it.  It's a whopping 10 miles to the lake (Michigan).

Voted one of the best skylines in the world.
Chicago has a lot of reputations.  I'd say our most recent is being the murder capital of the country because we have a bit of a problem with shootings in our poor neighborhoods.  A culmination of extreme segregation, oppression, and gentrification into neighborhoods that resulted in the razing of low income housing and disrupted well-established gang territories.  But that's a whole other set of conversations.


Today I want to talk about food.  Specifically, two things Chicago is world famous for:  pizza and Italian beef.  If you come to Chicago to visit, it's required to try deep dish pizza.  Have you had it before?  It's amazing, contrary to what Jon Stewart thinks.  There's debate among locals as to who has the best deep dish pizza but I side with Giordano's.  Others will say Uno, Gino's East, or Lou Malnatis.  None are bad, it's a matter of slight variations in how the pizza is made and what you like.

A thing of beauty.


Since being on this ridiculous elimination diet, I've had to sit and watch friends and family eat Giordano's pizza.  Twice.  The urge to say "to hell with it!" and take a bite was so powerful, I must now be able to relate to someone addicted to heroin who is a month into recovery.

Another food Chicago is famous for is Italian beef.  Al's is the best, but we like Portillo's as well.  Which you can find in other cities because the owner understood the importance of making this delicious food available to the masses.  For whatever reason, Portillo's beef has wheat and soy in it.  Because, of course it does.

So this past weekend I sat and watched my in-laws chow down on beef sandwiches while I ate the sweet peppers that could be put on said sandwiches.  They were as close as I was going to get to the flavor of the real thing and I guarded them like a rabid dog.

Me on Saturday.  Image credit:  Cujo

In all instances, my family and friends felt bad for me.  Which is not what I'm going for with this whole elimination diet experience.  They've even offered to try to find places to order from or go eat that will have something that I can enjoy.  I don't want them to do this at all.  Mostly because I'll likely only be able to order some lame salad with no dressing. Why should they have to work around my diet?  I tell them this, say it's not a big deal, and eat my carrots.  I think it makes them feel a little awkward or bad that they're able to do something I can't.  And I don't want that, either.  Which is why I do my best to downplay the whole situation. 

The joys of the social interactions while on a restricted diet.  Thankfully nobody has said anything stupid to me.  But I know that it happens, probably more often than it should.  I hear concerns from clients that people will think they're weird or ask too many questions about it if they go out and there's food they can't eat.  So they turn down offers to go to parties or out to dinner or whatever.  And that leads to isolation that makes depression show up or get worse.  Not a good plan, even though it has some sense to it.

To hell with that.  Yes, you feel deprived when you watch people eat [insert delicious food here] and you want to throw in the towel and enjoy yourself.  It's hard.  REAL hard.  And I can see how it'd be depressing if you think about it too long.  But what's more important, feeling sad about a delicious beef sandwich or enjoying time with friends and family?

No really, the beef is amazing.

--T2

Monday, July 18, 2016

Déjà Vu

12:00 PM Posted by Tiffany Taft , , , ,
I've probably had Crohn's disease since high school - which was in the early 90s; I never went to the doctor because I never had major symptoms until I was much older.  I did have mind numbing fatigue and random joint pains through college, but I chalked it up to knee surgery I'd had when I was 14.  Even if it was in the wrong leg...I mean I must have been walking funny to favor the injured side.


It wasn't until I was 26, working more than full time hours in the corporate world, that I had blood in a bowel movement.  Ok, if I'm real about it the toilet bowl looked like it was full of kool aid.  It was a lot of blood and it was scary.  I talked to a friend of mine at work who I knew had some digestive problems and asked her what to do.  She had seen a great gastroenterologist at Northwestern and told me to go see him.

"Do you really think I need to go?  I'm going on vacation in a few weeks." This was my logic in response to filling a toilet with blood.  She cajoled me to go see my primary care doctor, at a minimum, since I could get in to that office in a few days versus several weeks.  So I did, and he told me I needed to see a gastroenterologist and that I should cancel my vacation.

Cancel my vacation?  Surely you jest, good doctor.

After I got home from Jamaica, I got in to see my first gastroenterologist and after a few tests was told I had Crohn's disease.  It took a matter of months, which compared to the 3 to 5 year average to diagnose Crohn's, I was pretty fortunate.  It was mild and confined to my small intestines, so I went on a drug called Pentasa.  Which, if you don't know, is - or was, 16 capsules a day.  Who thought that was a good idea?  I remember them to this day because they were a pretty shade of blue.  I'd pop 4 of those bad boys 4 times a day but after a month it didn't seem to be doing a heck of a lot.

Sixteen of these puppies.  Six. Teen.
So I was put on a milder steroid, budesonide, which ended up giving me headaches and high blood pressure.  The lack of response of my "mild" Crohn's disease to these standard, first line treatments put my diagnosis into question.  Not by me initially, but by my doctor.  I went from a quick, easy diagnosis into what I like to call medical purgatory.  And that messed with my head a long, long time.

Over the next year or so I had every test known to man it seemed.  Sometimes twice.  It was during this time I switched to one of the IBD specialists in the practice and he was pretty sure I didn't have Crohn's disease.  Great!  So why do my hips and knees hurt so badly, then?  Why am I still going to the bathroom 10-15 times a day?  Nobody knew.

The testing was maddening because of its inconsistencies and lack of definitive answers in one direction or another.  I had dangerously low vitamin B12, but after peeing in a jug for 24-hours to measure if I absorbed it properly, the test came back normal.  I took a blood test to look for IBD markers and came back positive for ulcerative colitis, not Crohn's disease.  These are the 2 that stick out in my mind, but there were many others.  Elevated sedementation rate but normal C-Reactive protein  (both general indicators of inflammation in the body) was my personal favorite.  I was literally about to walk away from it all - no more doctors, no more tests, I'll just live with whatever the hell this is when I developed my first fistula.  And that little tunnel in my body from my colon to my skin confirmed the diagnosis in my doctor's mind, without a doubt.

Calling Dr. Fine, Dr. Howard, Dr. Fine!
Unfortunately it didn't confirm it in my mind.  I lived in this parallel process world in my head with fear that they would tell me it wasn't Crohn's again, which meant I'd go back to all the testing and head scratching simultaneously with a vehement denial that I actually had the disease.  I was petrified that they'd take away a diagnosis that I didn't even believe I had.

As time went by, the diagnosis stuck. Nobody questioned it and I was put on a high powered drug called Remicade.  I only received 3 doses before I developed an allergy, but even in those 3 doses I felt better.  I've never gone back to less powerful medications since then (2004).  Thankfully the pharmaceutical industry has invested heavily in these types of medications (will refrain from cynical commentary about how much money they make from them) and I have options should my current medication, Cimzia, stop working.  Since 2004 I've only had surveillance testing, whether it's the every 3 year colonoscopy or blood draws every 6 months to make sure things are cool.  For the most part they have been, or if things went uncool there was a logical reason and course of action.

On Friday I met with my current gastroenterologist.  The IBD guy I saw at Northwestern moved to another state.  Plus when he got promoted he technically was my boss, and that was a little bit weird for me.  I really like and respect my current doc, but Friday gave me a bit of Déjà vu.  We talked about my endoscopy and how the eosinophil count only went down a little bit, and my esophagus essentially looked the same, so the diet didn't work.  In addition to removing dairy and egg from my diet and doing another 6-8 weeks of food elimination, she started talking about additional tests:  1 to measure the pH in my esophagus for 24-hours to see if acid reflux is a factor (Bravo pH test), another to measure if food exits my stomach in a timely manner (gastric emptying test), and another to take images of my esophagus by drinking barium to see if it's narrowed or has other issues that might be causing symptoms (fluro-esophagram).

A is a normal esophagus. B is narrowed due to EoE.  Not sure which I'm hoping for.
3 more tests, in addition to the next endoscopy scheduled for the end of September.  I cringed, for multiple reasons, but primarily because of what I wrote about above.  She's being thorough, I understand that, and if I didn't have those experiences in my past I probably would view this as a hassle at worst.  One source of amusement in all of this is the irony that the gastric emptying test requires me to eat some eggs, which I can't have because I've removed dairy and eggs from my diet to round out the top 8 most allergic foods.  So that one will have to wait.  Damn.

The esophagram is scheduled for a few weeks.  My cynicism tells me not to expect much.  After all,  I've been here before.

--T2

Monday, July 11, 2016

No, I Don't Have Gluten Sensitivity

12:57 PM Posted by Tiffany Taft , ,
I have a lot of good people in my life.  Since my 20s, I've adopted a "low drama" friend strategy in that I don't have friendships with people who create unnecessary bullshit.  It's a good method, you should try it if you haven't already.

I also have a job where I'm constantly talking to people, listening to their stories, sharing parts of mine if it's appropriate (therapy relationships are strange things). What do I mean by appropriate?  When I'm meeting with a client, that hour is their time.  It's about them and what they're dealing with that day.  We're taught in graduate school to establish boundaries for many reasons I won't get into here, but boundaries are a good idea and therapists vary on how strict or loose they keep boundaries with clients.  Like a lot of things in my profession, this is a grey area.

I've heard some crazy stories of loose therapist boundaries.  Cray. Zee.

Speaking of loose boundaries.
I tend to land somewhere in the middle.  I have pictures of my kids in my office, for example.  I do disclose my illness to some of my clients, some I don't.  It depends on if them knowing I have Crohn's disease - or now, eosinophilic esophagitis on top of that, will help with their treatment somehow.  I know that sounds kind of strange, but it's a critical decision I make with each disclosure.  If I don't think it'll be useful, or even harmful, I don't bring it up.  I've seen many clients who never knew I was ill.

Then again, I'm blogging on the internet about my experiences.  So, there's that.

Disclosure is something every person living with an invisible illness deals with on a regular basis.  We know that trying to keep an illness hidden from everyone is actually more detrimental than telling just one person.  Keeping an illness hidden can be downright exhausting.  And the stress of being outed certainly doesn't help anything, and can lead to considerable anxiety and social isolation.

When you socialize with an illness that impacts what you can or cannot eat, it almost immediately puts you in a situation to disclose.  And deal with all the circumstances that go along with it.  I've been on this elimination diet the past 6 weeks or so and have had to explain to people that I can't eat several foods like soy or wheat.  For some reason that seems like an open invitation for many people to launch into a discussion on gluten sensitivity.

My immediate reaction is to cringe, which isn't fair.  Even though the jury is still out in the research world about what, exactly, gluten sensitivity is there are plenty of people who feel crappy after eating too much gluten.  Or FODMAPs, as the case may be panning out.  However, I do think that gluten has gotten a bad rap and is this black sheep of the food chain like eggs were in the 90s.  And I think there are more people claiming gluten sensitivity than the actual prevalence, so much so that a stigma about it has emerged.

Oh, you're one of those people.


Where those implies that my symptoms or condition isn't real rather some made up bullshit that I hide behind so I can be picky in restaurants.

I cringe because my esophagus is full of eosinophils, which shouldn't be there at all, and there's active inflammation - damage is being done.  The biopsies came back positive for EoE from my endoscopy last week.  I will say I probably have fewer symptoms than someone with gluten sensitivity has, to be honest. But I know as I eat, the food I put into my system is causing my system to attack itself and I don't know what food(s) are the culprit.  But I fall silent instead of trying to explain the details of EoE, nod in understanding of how difficult a gluten sensitivity must be, and change the subject.

I thought Crohn's disease was hard to explain, but it seems like someone usually knows someone with it.  Or I just haven't met enough new people to have to explain it again.  It sits on the back burner, I deal with it when it decides to flare up, then I put it back on the shelf.  EoE is in my face.  The people in my life don't mean to cause me to cringe.  As I said, they're alright.  But it just seems to come with this new territory I'm in.

I look forward to the days I can put EoE on the shelf, too.

--T2



Saturday, July 9, 2016

Results Anxiety

6:55 AM Posted by Tiffany Taft , ,
I stood and stared into my refrigerator this morning for about 5 minutes.  Not because it's empty except for a lonely bottle of ketchup.  We're fortunate to have food in our house, including a host of fruits and vegetables that I get from the internet (Door to Door Organics).  Because I'm lazy.  Actually it was the bowl of apples that drew my stare.  I love a good, cold apple.  Preferably honey crisp or fuji or granny smith.  Red delicious run too much risk of being mushy, in my opinion.

My face when biting a mushy apple.

I don't want to eat any more apples.  The thought of eating another apple sends me into a catatonic state, staring into my fridge.  I look around at the other food, most of which is off limits to me right now because I'm still on the elimination diet.

My endoscopy wasn't clear.  As my GI doc put it "It's not too bad" but I still have inflammation in my esophagus and stomach, plus some new stuff that I don't really want to even think about.  It could be nothing or it could be the Crohn's disease causing issues further up the system than it usually likes to cause issues.  I have an appointment on Friday to go over everything and next steps.

A likely option will be to eliminate the last 2 "Top 8" foods that trigger EoE - dairy and eggs.  My gastroenterologist was trying to be nice when we planned this diet and let me keep these 2 food groups because my allergy testing for them came back 0/6, or no reaction.  But according to the research, 50% of people with EoE have symptoms after dairy exposure even without a positive allergy test.



I've worked at Northwestern University since 2004 and have a good relationship with the 2 experts in eosinophilic GI illness there, so I can bounce things off of them.  I'm not going to lie, it's nice to have that access and I'm very privileged.  I know what it's like to not have access to your doctors, personally and through stories I hear from my clients. I chatted with one yesterday who said removing dairy and egg was the logical next step, then repeat endoscopy in 6-8 weeks.  I'm guessing my doctor will say the same, unless by some miracle the biopsy results are better than the last time.  I'm not very optimistic, but hey stranger things have happened.  Like "The View" still being on the air.

As I looked into the fridge this morning I scanned the foods I've been able to have the past 2 months that will no longer be allowed.  What the hell am I going to put in my coffee?  Rice milk?  Pretty sure that's a crime in some places.

I recently had a conversation with a client on the versatility of the word "shit." 

(Hey, I do important work, people)

All I seem to think when it's time to find food these days is "shit, nothing to eat" if I'm out and not prepared with bringing my own food or "this is some bullshit" when shopping and reading food labels or "fuck this shit" and resisting the urge to just eat a loaf of bread. 

See, versatile. 

Profanity aside, I'm feeling pretty frustrated and defeated right now. This is a natural progression through adjustment to something like this that thousands of people have done before me, and will do after me.  It'll get better, but the light at the end of the tunnel is still pretty far in the distance right now as my doctor and I try to figure out what the hell to do.

In the meantime, I ate the apple.

Thanks for reading about my bullshit.

--T2


Friday, July 1, 2016

Test Anxiety

6:47 AM Posted by Tiffany Taft , , ,
T-minus 3 days until my next endoscopy.  You'd think with the sheer volume of times I've been through medical testing, it'd be no big deal.  Yet here I sit, waiting for Tuesday, 9 am, to arrive so I can get my esophagus checked out to see if this diet I've been on is actually working at a physiological level.

"Good evening, Clarice."
 I want to think it is, I am better.  But I still have some symptoms depending on what I eat - rice, for example, takes a bit to make it down the ol' pipe.  It could be something as simple as there's some narrowing going on from the inflammation I had so I need a dilation, or my gastroenterologist will every-so-carefully stretch my esophagus back to it's normal width with some type of tool that I don't even want to think about.  It probably belongs on Game of Thrones or something.

Full disclosure, I've watched about 3 1/2 episodes of GoT.  Enough to hate Joffrey like the rest of the world.  That's about it.

At least this isn't my gastroenterologist.
I do get propofol for sedation, so there's that.

My worry is she's going to see not much improvement and that while I feel better, the diet isn't right.  There might be other foods that could be causing me problems, so I could face another 6 weeks of eliminating even more foods and having yet another endoscopy.  I honestly have no clue what the plan is, and that makes it easy for me to go down the "what if" rabbit hole.


I tell people all the time not to go down that rabbit hole, or if they do, don't spend a whole lot of time there.

Medical testing is stressful, whether you're new to the whole thing or have been in the system for over a decade, as I have.  We say anxiety decreases with exposure to feared events because we learn that we can manage through situations that seem almost catastrophically bad and come out the other side relatively OK.  But for some reason medical testing is a different animal, and research backs up the negative effects it has on the body.

According to a 2011 American Medical Association article, between 8% and 26% of abnormal test results are not discussed with patients in a "timely" manner, even with the use of electronic medical records.  Depending on who your doctor is, patients can wait over a week for results, which may not be explained well or even left on a voicemail.

I remember when I was being worked up for Crohn's disease and the tests I went through, sometimes 2, 3, 4 times.  It was before the popularity of MyChart or other patient portals, and it was excruciating in terms of the wait, the phone tag, the anticipation.  I hear stories from clients about this dance with the health care system and the anxiety it creates.  For people seeking a diagnosis, waiting to only find out everything is normal can be a harder thing to hear than "you have [insert illness here]." I know that sounds strange in a way, but it also makes complete sense.

A few years ago I wrote about the Catch 22 of normal test results.  You can check it out here.  For Tuesday, I don't think I've wanted test results to be more normal in my life.  Here's hoping.

No Whammies!
 --T2




Friday, June 10, 2016

Let's Talk About Soy

4:53 AM Posted by Tiffany Taft , , ,
Who knew a 3-letter word could be such a royal pain in the ass?

Living in the #1 state in the union when it comes to soy production (Go Illinois!) I knew it was a commonly used legume. According to the internet, and the government's website on soy production, the vast majority of soy grown in the US is consumed by animals. The next most common use, and subsequently the bane of my existence the past 2 weeks, is that it's made into oils which, in turn, are used in everything.

Ok not everything.  I have yet to run into soybean oil in a container of strawberries.  But there's still time.


As I mentioned in our 200th post, I've started a strange elimination diet in that it's not the typical six/eight food elimination diet commonly used as a treatment for eosinophilic esophagitis (EoE), rather a modified version that allows fun things like dairy and eggs but excludes things like celery and apricots.  The diet is based off of skin prick allergy testing I had in May, which actually has a pretty high false-positive rate (up to 50% for some foods), so I'm banking on it all just being wrong.

One problem with that theory is since starting this diet 2 1/2 weeks ago, my EoE symptoms have all but disappeared.  I went from near-constant burning in my esophagus and daily dysphagia (i.e. this food better go down eventually) to only an occasional bout of heartburn.  I was starting my day with coffee and non-dairy creamer (soy) and ending it half the week with a craft beer (wheat, barley).  In between I was eating various vegetarian foodstuffs (soy), finishing off my kids' peanut butter and jelly sandwiches, and having a few chocolate covered almonds as an afternoon snack on the regular.  Basically eating or drinking everything that I'm not supposed to have on a daily basis. 

I'm cured!  It's a friggin' miracle!


Or, maybe it's just all psychosomatic - the "nocebo" effect, as it's called.  If you remove a food from your diet and you think it will make you better, it does. This phenomenon was demonstrated in a follow-up study in Australia re-evaluating non-Celiac gluten sensitivity and led to the discovery of how FODMAPs, or these thing-a-ma-bobs found in a lot of foods, not just gluten-y foods, may contribute to irritable bowel syndrome (IBS).

My nocebo effect theory will be tested on July 5th when I get another endoscopy to check how things really look and if there are any eosinophils still hanging around my esophagus.  I'm cautiously optimistic that things will look better, but part of me expects to be told "nope, still there. Now you have to eliminate wheat, too."
I mentioned in my last post that I study quality of life and other psychological issues in people living with EoE as part of my part-time job at Northwestern University.  I also see a handful of patients with EoE in my practice.  So I've heard stories upon stories about life on some form of elimination diet.  These stories spurred the 6 questions we wrote on our questionnaire to measure quality of life that are specific to being on an EoE diet:

I worry when I'm out that I won’t find something to eat.  Check.  I took my husband out for his birthday the other night to our favorite German restaurant and just read the menu over and over and over to find something that would be ok, and there simply was nothing except for a lame salad.  Germans are not known for their salads.  Even the cider on tap had apricots in it.  

I worry about eating out for fear of contamination.  Check.

I spend a lot of time planning my meals.  Not really, they're usually some combination of fruit (but no apricots!) and cheese sticks.  So I should be spending more time planning my meals. 

I find it troublesome to read food labels and shop at special stores. Troublesome isn't the word I'd use.  It's almost reflexive at this point to check the label.  What's troublesome is the near-constant disappointment that something contains soy.  Or peanuts.  Or almonds.

Side note: In my last blog, I scoffed at celery and buckwheat being simple things to remove from my diet. Both of those have shown up on food labels.  Apparently celery is naturally high in nitrates and farmers who run small operations use celery juice as a preservative in bacon.  I have bacon in my fridge with celery on the label as an ingredient.  Bacon.


And buckwheat is used in one of my favorite "top 8 free" snack bars from Enjoy Life, which I bought in bulk off Amazon before I realized this was the case.  My kids are enjoying them.

I find myself spending more money on food because of EoE.  Maybe a little.

I have difficulty finding foods I can eat because of my EoE.  If I'm prepared, then no.  But gone are the days of just grabbing something out of the pantry after a 10 hour day at the office and I get home and cooking is the last thing on my mind.  Even my easy go-to of raw vegetables and dip is out the window because dip has soy in it.  As do practically every salad dressing on Earth.

I have yet to bring myself to eat raw broccoli plain.  My 1.5 year old son does that and, frankly, I'm a little worried about his decision making abilities.

It is not lost on me at all that my challenges on this diet are small in light of the fact that millions of people in the world are hungry right now and knowing where their next meal will come from is an enormous anxiety.  I have food I can eat, quite a bit actually, if I put the time into it.  I have the resources to buy fruits and vegetables and specialty bars with buckwheat in them.

This diet is a pain in the ass, but if I keep perspective - it's making me feel better, it's hopefully repairing the damage to my esophagus, I have food I can eat - versus focusing on the inconveniences it doesn't fester in my head.

But I do think we could cool it a little with the soy, ok US food industry?

--T2

Friday, May 20, 2016

Post 200: Doubling Up

5:09 AM Posted by Tiffany Taft , , , ,
Greetings and salutations.  Welcome to our 200th blog post!  It'd be more exciting with necessary fanfare if our blog hadn't been defunct since January.  And most of 2015 if I'm honest. I've really dropped the ball on writing and am making a pact with myself, and you all, to do more of it going forward.  I might change what I write to more personal stories in addition to our usual fodder.

So what's new with you?

Yesterday, May 19th 2016, was World Inflammatory Bowel Disease (IBD) Day.  And tomorrow, May 21st 2016, is the last day of Eosinophilic GI Disorder (EGID) Awareness Week.  We sure have a lot of awareness days, weeks, and months don't we?  I personally am all for advocacy efforts, especially for diseases that are poorly understood, not well known, and potentially stigmatized.  I get my panties in a bunch when corporations come in to make a buck, like when they made those pink drill bits for breast cancer awareness month.  No.

Twitter was full of great informational posts and stories about life with IBD yesterday.  And on Wednesday, Steph and I hosted a Twitter chat on mental health in IBD and it was fantastic with really great insights from people living with IBD.

You can check it out under #IBDSC.

So we haven't been totally lazy when it comes to social media.

This weekend is the big gastroenterology conference, Digestive Diseases Week, in San Diego.  I'll be heading out way early Sunday morning to attend for the last 2 days and stand by my poster on a novel test for dysphagia, or difficulty swallowing.  I know, exciting stuff!  DDW is a bit of a crazy experience because it's so. big.  I have my schedule planned and will scan the poster sessions for any and all mental health research to write about here.  Unfortunately the poster sessions are where most mental health research ends up at DDW, not the actual presentations to a room of people.  I really wish that would change.

Back to the convergence of World IBD Day and EGID Awareness Week.

I had a bit of a flare up in the ol' Crohn's disease last fall and at an appointment with my gastroenterologist I brought up a symptom I'd had for, oh, about 5 years that had never crossed my mind to mention to her - sometimes when I eat, food gets sort of stuck in my esophagus (technical term:  dysphagia. You know, like the RESEARCH I just mentioned I did.  What is wrong with me?  5 years?).  It always makes its way down to my stomach, but there are times where it seems like it might not make it.  Putting your arms over your head was a trick I learned from an EGID patient I once saw for therapy and I'd just do that.  It's painful in the moment but it passes.  I blamed eating too quickly ever since having children.  I mean, seriously, those things make you hoover your food like you've never done before.  She informed me that this was not normal, hoovering aside.

Fast forward through the upper endoscopy, round of PPI medication, and meeting with an allergist for allergy testing (I'm already allergic to cats, trees, mold, grass, dust mites), lo and behold I have eosinophilic esophagitis (EoE).  After the endoscopy came back highly suggestive of EoE I didn't really react other than to laugh because this is my thing.  I research social and emotional issues for people living with EGIDs.  I wrote the quality of life questionnaire many researchers use now.  Somehow this was supposed to protect me?  Let's be real, this stuff happens with no explanation other than it happens. 

Learning:  EoE is considered an allergic disease but not true food allergies.  Instead, certain foods trigger an increase in eosinophils (a type of white blood cell) to attack the esophagus.  Kind of like Crohn's but different enough.  The current treatments are topical steroids, systemic steroids like prednisone (nope), and eliminating the foods that trigger the allergic response.  I opted for the diet.

But let's continue with the "say what?" for a second.

How in the hell did I have EoE?  Am I hanging out with EoE docs too much?  Did it seep through my computer screen or did I catch it from people at a CURED Patient conference?  Of course not.  But seriously, EoE and Crohn's Disease?

Turns out this is somewhat of a rare thing.  I don't want to say I'm now a super special snowflake, but there don't seem to be a whole lot of people (that they know of, anyway) living with IBD and EoE.  So you can interpret how special this is as you'd like.


After the allergy testing came back positive for a ridiculous number of foods, ok like 10 foods, my doctor and I came up with an elimination diet plan that I'll start after I get back from DDW.  This is one of the things I love about my doc, she gets that life has to continue while you're following one of these crazy diets.  And going to a wedding, having my own wedding anniversary, and traveling to San Diego would be a lot harder on an elimination diet that includes soy, peanuts, almonds, sesame, barley (BARLEY?!?!  But, beer!!), wheat, apricot, and celery.  But who cares about celery?  Buckwheat is also a no-no, but other than some Japanese noodles where does one consume buckwheat, and tuna was on the line but not on the elimination list.  I start the diet Tuesday and get another upper endoscopy July 5th to see what the state of the union is.


Because my doctor isn't a sadist, she said I could keep wheat for now and see what happens.  If you don't have a non-sadist doctor, I highly recommend getting a new one.

Have you ever read food labels?  Pretty much every food product made in the United States contains wheat or soy.  A lot of the time, it has both. Whenever I make the drive down through central Illinois to visit my husband's family, all we pass along Interstate 55 is corn on one side, soy on the other. I get it, farmers need to make a living.

Soy.  Soy everywhere.

In the past I have done the 6 food elimination diet, but not for EoE, so I know what this entails.

The endless reading of food labels, checking for hidden ingredients on the do not eat list.

The risk of cross-contamination when eating anything you don't make yourself.

No more non-dairy creamer.

Explaining to other people why you can't eat this, that, or the other.

Did I mention I'm a vegetarian?  That'll be simple with the whole no soy thing.


As the time to start the diet gets closer, all of this has started to sink in and I've had my "are you kidding me!?" moments.  When I go grocery shopping for the family, walk down any aisle, and take a box of some food off the shelf and put it back because "CONTAINS SOY" is clearly written on the side over and over again, I feel this weight on my shoulders and a little knot in my stomach (thanks, brain-gut connection).

I'm so focused on soy I've forgotten the other stuff I have to avoid.  Like delicious almonds. And peanut butter.  And a good craft beer. This is the Dean Wormer of Animal House diet.  No more fun of any kind!


I may be a clinical psychologist, an expert in cognitive behavioral therapy, and know my way around EGIDs and IBD but I'm not immune to the emotional weight of a new diagnosis. Or an old diagnosis that flares up.  Or the treatments.  The damn treatments we have to go through.

I know how to reframe my thinking, not blow things out of proportion, not see things in absolute terms, relax, and all the other stuff I work with people on on a daily basis.  But I still feel angry and sad, and I worry. Because that's what you're supposed to feel when your life changes so drastically.  It's a human reaction.

I also know not to go there for too long.  And to get it out.  So if you'll bear with me, I'll be using this blog space for a while to do so.  I thought about keeping a separate personal blog for this because I'm supposed to maintain boundaries as a psychologist.  But you're not my patients, and if my clients are reading this blog then (hi) they know a bit more about me, and if my entries help someone learn something or feel better then it's worth it.

Cheers (until Tuesday)

--T2



Thursday, January 7, 2016

Caring for Crohn's Interview (repost)

8:13 PM Posted by Stephanie Horgan , , ,
Welcome to 2016, blog readers! Since its been a busy season for both myself and Tiffany, we are starting by reposting a wonderful interview that we did exactly three years ago back when we were new at this whole business thing. We've come a long way, but a lot of the things we talk about in this interview with our friend Rebecca at Caring for Crohn's still hold true. Thanks again for your support and spreading the word to all your chronic illness pals! 

Caring for Crohn’s Interviews Oak Park  Behavioral Medicine (reposted from 1/7/13)

I recently had the opportunity to ask Dr. Tiffany Taft and Stephanie Horgan of Oak Park Behavioral Medicine some questions for Caring for Crohn’s and I am very excited to share the interview with everyone.
From L to R, Dr. Tiffany Taft & Stephanie Horgan
From L to R, Dr. Tiffany Taft & Stephanie Horgan
Oak Park Behavioral Medicine, located in Oak Park, Illinois, specializes in working with adults and children living with chronic medical illnesses. Dr. Taft and Stephanie are experts in the psychology of digestive illnesses, including IBS, Crohn’s Disease, Ulcerative Colitis, and Eosinophilic GI diseases, but also treat patients with other chronic illnesses.
What’s even more unique about this practice aside from the focus on treating patients with chronic illness is that both Dr. Taft and Stephanie are fellow Crohnies!
Read on to hear about their practice and how they help improve the psychological health of IBDers.
Caring for Crohn’s: How long have you been in practice?
Tiffany Taft: We’ve been together in private practice since August 2012, so we’re quite new but not new to working with people with chronic illness. Steph worked for the past three years at a hospital in the Chicago suburbs in the oncology department helping people living with cancer. She continues to work there doing part-time clinical work and part-time research. I spent eight years at Northwestern University in the gastroenterology department working with people with chronic GI illness and doing research on the psychological aspects of these conditions.
C4C: Why did you decide to focus your practice on people with chronic illnesses?
TT: There are a couple of reasons we did this. First, both Steph and I have been personally affected by chronic illness, so we felt this was a natural area for us to give back to those who live every day with an illness. Second, we understand that there’s a gap here in that there aren’t many therapists who specialize in working with people with chronic illness or who have undergone specialized training while in graduate school for this. There’s more to it than saying “Oh, I can help people with medical illness.” We wanted to let people know there are therapists who understand both the psychology and the medicine of a chronic illness, and who are experienced working side-by-side with physicians so everyone is on the same page.
Stephanie Horgan: We have both worked in a hospital setting and been patients in a hospital setting and have seen the lack of support first-hand. We feel that having the option of a therapist is a crucial component of treatment when someone is diagnosed with a chronic illness.
C4C: Do either of you or anyone in your family have IBD or other GI ailments? If not, what drew you to wanting to help patients with these ailments?
TT: Both Steph and I have been diagnosed with Crohn’s disease for roughly the same amount of time – 10 years. So we understand what it’s like to live day-to-day with IBD, but we also understand that each person’s experience is unique and what we’ve been through may not be the same as what our IBD clients have been through. We do our best not to blur our experience with our clients’ and only use our own experience if it’s helpful for our clients to know about. Some people want to know more, some less.
SH: I have had Crohn’s for 13 years now, and actually just finished a three week stay in the hospital for another surgery. I don’t have a family history of IBD but my own experience is what inspired me to help others with similar conditions. When I was first diagnosed, I saw a therapist that specialized in GI ailments and found it tremendously helpful. She worked alongside my gastroenterologist and surgeon and I didn’t need to educate her on everything. Having someone like this made my experience better, but not everyone is open to that kind of support. If a therapist sounds uninteresting to you, I encourage you to at least reach out to CCFA(Crohns and Colitis Foundation of America) as they have lots of helpful resources for those newly diagnosed. Something that keeps me going is my network of other people I know who are diagnosed, as they inspire me to keep going and give back.
C4C: How does a behavioral medicine therapist help patients with chronic illnesses? How does it differ from a traditional therapist?
TT: A behavioral medicine therapist will focus on how the chronic illness fits into the person’s life story, and where it may be causing problems. It all depends on what the person wants to work on in therapy. Some people are newly diagnosed and are just trying to wrap their brains around the whole thing, so we can help with that through education and just giving the person a safe place to talk about their illness. Some people are anxious about their symptoms, so we help treat this anxiety by evaluating what’s triggering it and teaching relaxation techniques. Or a person may be depressed and feeling isolated, so we help them cope and increase their social interactions.
The main difference between a behavioral medicine therapist and a traditional one is the central focus with us is the medical diagnosis.
Behavioral medicine therapists can be psychologists or social workers. I’m a licensed clinical psychologist, which means I havea doctorate in clinical psychology. I specialized in health psychology so I have expertise in working with those with chronic medical illnesses. We even bill insurance differently than a traditional therapist, using the person’s medical diagnosis rather than a mental health diagnosis with special treatment codes.
SH: Technically, I am a Licensed Clinical Social Worker, which means that I have completed 2 years of graduate school as well as 2 years of clinical supervision. During my training, I focused on clinical work/therapy, as it was something I knew I wanted to do in the future. I also took many courses on mental health and health, which is something I was interested in looking at the intersection of. Both Tiffany and I do very similar things, but we have different training and different letters after our name.
C4C: What techniques are used in your practice?
TT: Steph and I use a lot of Cognitive-Behavioral Therapy (CBT) techniques in our practice. The basic idea of CBT is how we think affects how we feel emotionally and physically, and that affects how we behave. I like CBT because it empowers people. We ultimately only have control over ourselves and how we think and react to what life brings us. So one of the first things we have clients do is start paying attention to their self-talk, especially as it relates to their illness.
For example, I had a client with Ulcerative Colitis who was very anxious about having an accident, and her anxiety was causing her to have urgency and a lot of close calls. She was stuck in a vicious cycle. I had her think of the places that she was most likely to feel urgency, and then pay attention to her self-talk even before she was in that place but knew she would be soon. Once she was more aware of what she was saying to herself, we then worked on changing these thoughts to ones that were more productive and less likely to lead to worry and urgency.
At the same time we evaluated and changed her thinking, I also taught her some relaxation techniques. The basic skill is deep breathing, which sounds really easy – but if it’s not something you do regularly (like in yoga, for example) it’s actually pretty difficult for most people when they start. We also added some guided imagery exercises so she could picture herself in a relaxed place – for her it was a beach in Puerto Rico that she’d visited. She was able to reduce her anticipation of having an accident, her anxiety went down, and she had fewer close calls. This all took about 8 weeks.
SH: Each patient is different. Some may need long-term support, some may just need a few sessions. Our goal as therapists is to give the client tools and help them become independent of us so that they can live their life fully. When I work with kids, I use play therapy and mindfullness so that the child can start to explore what living with IBD will look like and get to know their body’s cues.
C4C: Are any techniques more successful than others in treating IBD patients?
TT: I wouldn’t say there are techniques that work specifically for IBD. We know that the most important predictor of therapy being helpful for someone is the relationship they have with their therapist. So finding someone who is a good fit is key. There are many approaches to therapy, and your experience will be different depending on the approach your therapist uses. CBT tends to be an active discussion with problem solving and home practice, where in other types the therapist may do more listening and not ask you to do things in between sessions. It all depends on what style works best for you. We have some questions on our blog to ask a potential therapist.
C4C: What sort of benefits do patients with IBD typically see after seeking therapy?
TT: The most common benefits we see are a greater acceptance of the IBD diagnosis with less impact on day-to-day life. People who feel socially isolated because they’ve withdrawn for fear of having symptoms in public find the courage to go out again. Worry about a flare or symptoms goes down. People feel more empowered to self-manage their condition and more in control.
SH: People find that their stress goes down and it helps with overall life enjoyment.
I also see people move past the stigma of having a chronic illness and begin to feel less awkward talking about it. The best part of it for me is when I see a client who starts to give back to others who are in the same boat.
C4C: Do many of the patients you see with IBD come to you with depression as a result of the disease?
TT: We do see some depression in people with IBD.
The statistics tell us about 25 percent of people with IBD will experience depression even when in remission, and that number goes up to 60 percent during a flare.
Usually depression is related to social withdrawal and isolation, or feeling like they have very little control over their illness.
C4C: How does medical hypnotherapy work? Is it successful in treating IBD?
TT: Medical hypnotherapy is a special type of relaxation that should only be done by people who are trained in the technique. The way I describe it to clients is you go to that place where you’re about to fall asleep but you’re not quite there, so if there were a loud noise or something you’d be wake right up. You’re never not in control, we don’t make you do or say things like you may have seen on TV or stage hypnotists. When a person is in a state of hypnotic relaxation, the thinking part of the brain is pretty quiet and the theory is that the more primitive parts of the brain are better able to receive information. If the person was coming in for abdominal pain, I would talk about their pain decreasing using various “suggestions.” Hypnotherapy usually takes eight visits, and I give people a home practice CD to use in between visits. Medical hypnotherapy is very helpful in treating various medical conditions, and I’ve used it with irritable bowel
syndrome (IBS), ulcerative colitis, migraine, and chronic pain to name a few. Generally we see improvement in about four weeks.
Medical hypnotherapy is successful in maintaining remission in people with IBD. We did a cool research study when I was at Northwestern where we had people with Ulcerative Colitis undergo hypnotherapy, regular supportive talk therapy (not CBT), or treatment as usual. We followed them for a year after they finished treatment, and found that people who underwent hypnotherapy maintained remission for about six months longer, on average, than people in the talk therapy or treatment as usual groups. We still don’t know if hypnotherapy would actually treat active IBD, but we do know that relaxation strategies like hypnotherapy have an effect on the immune system. So it’s possible but more studies are needed.
C4C: What would you say to an IBD patient who is resistant to therapy but is very angry/depressed about their diagnosis? How can a loved one help them through it?
TT: I guess first I would say that we know there’s a very real stigma in our society toward mental health treatment, so it’s understandable to be resistant to coming in to see “the shrink.” However it is not a sign of weakness to need help adjusting to a chronic illness diagnosis like IBD. It doesn’t negate the severity or imply that your symptoms are “in your head.” So we would encourage people who are very angry or depressed to give therapy a try for a few weeks. If that’s not an option, then we’d say find someone to talk to about how you’re feeling. There are online support communities for pretty much every illness out there. For IBD, there are many Facebook groups, blogs, and support groups including those through The Great Bowel Movement and the CCFA. For loved ones, I’d recommend offering yourself up to be there to listen without giving advice. Many people say to us that family and friends mean well, but often they railroad a conversation with unsolicited advice (“have you tried…”), comments that feel judgmental (“what did you eat?”), or failed sympathy (“I had the stomach flu really bad so I get it.”). So try to keep that in check.Let the person come to you, but also check in periodically to see how they’re doing since people who are depressed tend to withdraw from others. Don’t only ask “how are you feeling?” but keep it more general since IBD isn’t the only aspect of the person’s identity and life. Finally, if you’re struggling with your emotions related to a loved one living with IBD, you may want to consider seeing a therapist. Steph and I not only see patients but their family members, and our peers would say the same.
C4C: Are there many behavioral medicine therapists across the nation? How would someone go about finding a therapist who focuses on treating people with chronic illnesses?
TT: There are many, although I’m not sure how many specialize in GI illness. That number seems to be pretty small. There are websites out there that you can search for a therapist and check off certain criteria. I’m listed on Psychology Today andGoodtherapy.org, which both have the option to filter your search by “medical illness” or “chronic illness.” Patient organizations like the Crohn’s & Colitis Foundation of America have professional directories that include mental health professionals, so this is another place to look. You can also call your local chapter’s office and see if they have a directory for your area. You can also ask your physician if they know anyone in the area that they recommend. Some therapists are more web-savvy and may be on Twitter or Facebook.
SH: We know how much people use the Internet now to address their health issues, so we decided to start a blog, Facebook page, and Twitter account. Feel free to check us out as we post about all kinds of chronic illness issues.
To learn more about Oak Park Behavioral Medicine, you can visit them online on their blogFacebook page, and Twitter account.