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

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.


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.


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.