Eosiniphilic esophagitis and telehealth with a brand new GI doc

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Seeing a new doctor is always fraught.  There is no way to know what kind of person this new doctor that you have been referred to is.  Your GP has written down their name for whatever reason, perhaps as simple as habit, and hopefully they will be a good fit.

In truth, it shouldn’t matter if the doctor is a ‘good fit’ or not. They should still do their job. But those of is with invisible illness and high impact chronic pain and a long, complicated health history know that doctors differ widely in their approach, and some are unable to get past their personal biases against people living with chronic pain, especially women, especially the overweight or obese and most especially of all, those who take opioids. 

He called 35 minutes late.  That’s not unusual, and sometimes it’s a good thing, because a doctor who is running late cares enough to take their time with a patient who needs it.

Or other times they just wanted a coffee break and don’t’ mind if you’re waiting.

I think this guy is the second kind. 

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He’d read my file and made up his mind who I was.  That’s never good.  But all doctors do it. Prejudge, that is, not read your file in advance. 

Doctors are taught to look for patterns and to quantify and qualify their patients quickly into categories.  That makes sense, but if they do this process to fast, without thinking it through, they ca very quickly misjudge and then misdiagnose.  Prejudging purely from another doctors clinical notes without even speaking to the patient is a red flag for me.

We both red flagged eachother, almost instantly. 

Great.

After the chitchat he says “what can I help you with”.

I explain that I have eosinophilic esophagitis which I have been trying to control with diet alone, as it hasn’t responded to prednisone, which I am taking for arthritis and adrenal insufficiency.  I eat very little and I’d like to increase my food intake, but I get diarrhea after eating solid food. And I have diarrhea daily, to the extent that some days it is the sole reason I can’t leave the house.  I get woken up two or three nights a week by the urgent need to go to the toilet.  I get severe abdominal pain, about once a week, usually at night, after a meal. The pain is severe, upper GI, but I’ve had my gallbladder removed, so its not that.  I suspect that all of this is related to my increasing my food intake, and eating more solid food. I also am having increasing trouble swallowing, I am being investigated for dermatomyositis and I am wondering if he can determine if my swallowing problem is related to eosinophilic esophagitis, or if it’s related to muscle weakness. 

He said “I can’t tell that.”

Ok, question 2 is answered.  The cause of my swallowing problems are the main reason for the consult, because some days I can’t even swallow water.  I struggle to get all my medications swallowed every day, and its just annoying.  His tone is dismissive, and I’m feeling like hanging up already.  Instead, I put a smile on my face (I know he can’t see me, but I read somewhere, way back when I was working on helpdesks, that the physical act of smiling will make your voice sound happier and more friendly.  I’m not sure why he’s showing zero interest, but I want to turn the consult around.  I’m paying for his expertise and living with constant diarrhea is no fun.

With a smile in my voice I say “I haven’t had any food impactions, so it isn’t as bad as it used to be in that respect, but it feels more like swallowing is really hard work, its hard to explain.”

He asks about my weight, specifically “what’s happening with your weight?”

I tell him that I gained 20kgs after taking Actemra that was impossible to shift, despite reducing my caloric intake to less than 1000 calories per day (it was often much less) and exercising five times a week.  I quickly followed that with the fact that I am a personal trainer and I know how to exercise for weight loss.  I could almost hear his skepticism in the silence on the line.

All doctor are skeptical, and most doctors despise menopausal women who complain about weight they can’t lose.  I race forwards to explain that my endocrinologist, Prof Greenaway, one of the best endocrinologists in the country, prescribed saxenda and then Ozempic to help me lose weight. The medication has been effective and I’m now within 5kgs of my goal weight. 

I state that my caloric intake, my exercise levels should mean that I am underweight, but I am not.

He scoffs. Or maybe it was a little cough.  I don’t know.  I ignore it.

He asks why I haven’t seen a GI doctor in over four years.  I tell him my previous doctor retired, and we were at the end of treatment options, anyway. The plan was for me to continue with my restrictive diet, and just carry on.  I’d been on prednisone of up to 12mg daily and that hadn’t “cured” my esophagitis, as my previous doctors had said it should.  I started to say that I had a clean scope with my current diet – rice, some vegetables, fruit. Chicken, beef, and small amounts of milk. 

He cuts me off  “But you haven’t followed any of the treatment protocols, how can you say you’re treating it with diet?  What you need to do is a proper elimination diet..”

I interrupt (politely), because he clearly hasn’t been listening, and I don’t want to waste his time or mine and I tell him I have done the elimination diet, as I said I had a clean scope…

He interrupts rudely in a condescending tone and says “No, you DON’T understand.  I’m not talking about removing a few things from your diet, it’s called the Top Six Elimination diet…”.

“I’ve done that.” I say.

He continues to talk over the top of me.  “…and it’s a very strict elimination diet where you remove all the top six allergens and you STICK to it”

“I HAVE DONE THAT.”  I have to speak more firmly.  He is not listening. He is condescending, he clearly has made up his mind that I’m a whinger and I wonder furiously what my notes say that has given him this impression.

“NO you haven’t!” He is just as firm. “There’s nothing about it in your notes!”  It feels like he’s yelling at me.  “it’s not as as just not eating a few foods, and that isn’t the protocol to treat EE”

Another day, another arrogant doctor.

“I HAVE DONE the top six elimination diet, but actually we called it the Top Eight when I did it. It WAS very strict and I followed it to the letter.  It was very restrictive, you don’t forget something like that. I saw a dietician as well, and we even did an elemental diet for a while, but its not covered by medicare for adults, and it was too expensive to continue down that path.  I have NO IDEA why there is nothing about it in my notes, but I promise you, I HAVE DONE THE TOP SIX ELIMINATION DIET.”

Still polite but very firm.

But in my head I’m thinking “Listen to me, you stupid pratt!”  I can’t stand people who have prejudged a person or situation, and then refuse to take on new information, sticking to their own perceptions which were based on incomplete or wrong information.

I loved my previous GI doc, but she clearly didn’t do me any favours in her clinical notes!

I mean honestly, here he is telling me that I have never done a proper elimination diet.  I am the patient. I think that I would know whether I have followed an extremely restrictive diet for a few years.  I’d kinda notice.  I’d remember that.  And his reasoning? Its not in the notes, so I must not have done it.  He believes what has been left OUT of my clinical notes over what I am telling him.

Pretty sure this doctor is going to be useless to me. 

He asked what medications I am currently on. I list my medications and tell him I recently retried a proton pump inhibitor to no effect.  And that’s when the suggestion that it might be a symptom of a neuromuscular disease came up, and the decision to consult with a GI doc.  I also told him that I have lost my voice, I am often hoarse and can no longer sing.

He grunts.  Singing is clearly not important to him.

And then he says “So are you still taking the opioids for pain?”

And THERE it is. The reason for his deplorable attitude.

“Oh yes,” I say. “I still take those, sorry I forgot about those.  I also use a testosterone cream daily, forgot that too, sorry about that.”

I keep it light, but I now know exactly why he’s treating me like an idiot, or scum.  He’s read my file, I have chronic pain, I take opioids, according to his profile, I’m clearly lazy, a malingerer, I exaggerate my pain.  I clearly have no willpower or determination, otherwise I wouldn’t be taking opioids. Therefore, no WAY could I stick to a very strict elimination diet.   

It all becomes very clear.  I understand the way he thinks, because those of us living with high impact chronic pain who rely on opioid pain-relieving medications have become highly stigmatised in the medical community over recent years. MOST doctors don’t want anything to do with us.  We have been profiled and now get treated like third rate citizens. Unhelpable.  Not worth their time.  Because clearly, we only want the easy way out, a pain pill!  So no point working with us!

You see the messaging that doctors have received from Painaustralia, the AMA, the APA, the RACGP, all of their professional organisations infact, is that ALL people who take opioids regularly are ADDICTS (not true, the addiction rate is less than 2%).  That opioids are NOT effective for chronic pain  (not true, all the studies show statistically significant improvement with opioids, but use side effects as a reason to not recommend opioids long term).  That these patients are difficult and refuse help, because they are addicted to opioids (also not true, chronic pain patients want to keep their opioids prescriptions because opioids ARE effective AND safe for their pain. And they don’t want their pain to return. NOTHING to do with addiction.)  The narrative has been twisted and created an underclass of patients – those who take opioids for chronic pain.

I read these kinds of opinions on doctors’ websites regularly.  Personal opinions from doctors,  pharmacists.  THAT’s what the change in opioid regulations has done, and THAT’s what Painaustralia has done to pain patients who rely on opioid pain relief.  Personal opinion? Yep, but its not hard to find studies that support all of this.  And I have lived this. I have felt myself being relegated to the “dirty” pile.  Exactly like I was treated today. 

Check out this link from 2019 when opioid hysteria first took hold in Australia.  Read the comments by the doctors.  See how many doctors abandoned their patients who were taking opioids. This is just a small sample.

https://www1.racgp.org.au/newsgp/professional/racgp-president-raises-concerns-after-palliative-c

He grunts again.  He says the only way to find out if my EE is active, is to do a scope.  He’s not keen to do that though (surprise, surprise, he doesn’t want to take me on as a patient).

He says he can prescribe a medication that should stop my diarrhea.  Symptomatic relief.  I agree, and thank him.  I agree that we’ve ruled out Crohn’s Disease or anything ‘serious’ and that it’s a harmless symptom, but obviously unpleasant.  He says he will send me the script, and that he’ll send a form for bloodwork.  He tells me that next time I get the upper GI pain, I should get my liver function tested the next day.  He says we’ll see how that goes, and that I should think about whether I want an endoscopy.

The other option is the topical steroids, swallowing a corticosteroid slurry, which would be preferable to systemic steroids.  But, since I already have adrenal insufficiency, maybe it isn’t worth it. He says if I want to try the oral steroids, first we’ll have to do a scope so we have a baseline to work with and can then do another scope a few months latera and see if the topical steroids are actually working.

I agree, because that’s perfectly sensible.  It will also be helpful to know if my current diet is still fine or if I have currently eosinophils in my GI tract.  I ask him what happens if my disease is progressing, what’s the end point.

He says he doesn’t know. No one knows. Eosinophilic esophagitis progression is not well understood.  Most people are controlled with oral steroids.  There aren’t enough studies.

He tells me again how complicated I am as a patient, and I guess part of the reason he doesn’t want to take me on is that complexity.  I understand that.  I get that from a lot of doctors too – they don’t want to touch anything, in case they upset something or someone else.  He tells me that I am already taking ALL the medication that are generally being used for EE, prednisone, methotrexate, even JAK inhibitors are being used on refractory cases (like mine).  His enthusiasm is underwhelming. 

I say I understand that I’m a complicated patient, with a lot going on disease and treatment-wise.  I thank him for the advice and tell him I’ll try the medications and get the bloodwork done.  I say that I think I’d like to have a scope done to see what kind of shape my esophagus is in, but its not urgent and can wait.

He agrees.

The wait is to give me time to decide whether I want to find another GI doc, or persevere with this guy. Consulting another doc is expensive, and there are no guarantees the next doc won’t have the same biases and attitudes.  Or the next doc could be even worse.  In the scheme of things, this guy is pretty good. He is providing quality treatment, he just has a bad attitude.  I’ll probably stick with him, better the devil you know, but I’ll think about it.

I resolve to ask for a copy of my clinical notes and see what my previous doc wrote about me.

I thank him again and tell him his treatment plan sounds great to me.  He becomes more friendly as the consult is clearly coming to a close. He reasserts an endoscopy should be done, but that it can wait until after the COVID lockdown. He suggests I make an appointment for eight weeks, to give me time to try the prescription and to get the blood work done. 

I thank him again, and we hang up.

Sigh.  Could be worse.  He’s clearly biased, and not terribly interested.  I’m sure he’s very capable of performing an endoscopy and telling me how my eosinophilic esophagitis is going, and whether my esophagus is damaged.  I’ll see what the eight week follow up appointment is like, then decide if I want that done. 

I wonder if the appointment would have gone better if it were face to face.  I am a relatively normal weight now.  When I was obese, that worked against me.  The second most hated trait by doctors is obesity.  Put together with opioids use, it creates a profile of disgust.  I am always hyper friendly, hyper respectful, hyper polite and try to be a perfectly compliant, easy patient.  My medical history means I am complicated, I want to make my personality as easy to deal with as possible. To try to balance my complicated history somewhat.  

That’s easier to do in person. 

I suspect the telehealth consult made it easier for him to imagine me as a certain kind of person, but I believe the same thing would have happened in person.  Maybe to a lessor extent.  Telehealth is great in a lot of circumstances, but when you’re meeting a doctor for the first time, its far from ideal.

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