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