A Rage Email to a GI That I'll Never Send (but want to)

 It's been a long time since I've blogged. I finally have a reason now.  I, again, had a bad experience with a GI (link to that entry on the word 'again'- note I was in pain and 10 years younger, so forgive my angrybadgrammar and fightingwords). 

Fast forward to 2022. Complainblogging!  My favorite thing to do when I feel wronged. Just look at some of my earlier blog history, particularly in 2011 :) or maybe not. :-X

For context:

Throughout the spring and summer of 2021, I had excruciating pain from my head down to my throat (right side) that affected my ear and my tongue. Talking was difficult without pain. I had a lot of tests done with zero answers. My onc thought it could be trigeminal neuralgia, my neurologist didn't (and doesn't) think so but treats me for it anyway (usually does this to prove him right if it doesn't work- he's that kind of doctor). The medication he prescribed over the summer was an XR nerve pain medication. A couple of months later (September), my belly just stopped working. I couldn't eat. It took over a month to have a BM. I lost almost 8 pounds from not eating. Guess what? Without a stomach you shouldn't take XR mediations. I stopped the medication and slowly it started working again. I take an immediate release version now which has helped my symptoms. Anyway, I think it was October when I called for a motility appointment. FIRST OPENING WAS MARCH.  Meanwhile, I had an EGD/CLS in December because I was due for them anyway- EGD for my post-surgical scope (delayed due to COVID). CLS because I have to have one every 5 years.  

March Appointment finally arrives. Obviously, I have figured out the issue (at least I think I did) but wanted to talk to someone about gut motility given my anatomy. As I said, it was an awful appointment. 

Doctor starts appointment with someone else at my appointment time. This happens, but usually the doctor comes by to apologize and gives me a time frame. I got nothing. This doctor even avoided walking by me sitting in an open exam room- went the other way after other appointment over to avoid seeing me. 15 minutes after that (30 minutes post appointment time) I find him in his office and an MA (and an empty clinical area)- was told he's "SO BEHIND" and "with a patient" but I know it's not the case. He comes in one second after I get back in. Obviously, he heard me complain about my appointment time. 

He starts off the appointment very confrontational, "SO WHY ARE YOU HERE?" (in a not so friendly voice) which always flusters me. I hate when I am asked this question by a new provider. Doctors reading this take note!  I feel like he got the information from me he needed but asked a lot of confrontational questions and even told me that the person who did my scope should be doing this appointment, but I told him I waited 5 months for this appointment and the scopes were done in the meantime. I expressed my dissatisfaction with being ping ponged. He ended the appointment with the most disingenuous "You have been through so much for your age, I am so amazed by you" (it was so grossly disingenuous). 

So, I wrote out a letter that I will not send him. I will make it more civilized. I wrote this out by hand, and it felt so good to rage write. So now I am sharing with anyone who cares to read this. 

Dear -----

I am writing to you extremely dissatisfied with your care on --appointment date--.  While there were probably a lot of factors that went into your day, I feel like I suffered as a result of your inability to read my patient history prior to my appointment. If you read my history, then I would feel even worse about our visit.  

Gastroenterology's standard of care is for people with stomachs. There is not enough support for nor understanding of patients without stomachs, particularly stomach cancer survivors who no longer need oncological care. This is not particular to GI. This is across medicine, hence being prescribed an extended-release medication as if it's an appropriate treatment for me. It wasn't. This could have really hurt me. Well, it did.  It wreaked havoc on my system and *I* was the one who advocated to stop the medication. *I* was the one who had to educate my prescribing physician that this was an inappropriate mediation for me to take. I am not a doctor. Why did I have to be the one to bring this to their attention?

I don't feel fully supported as a patient without a stomach. While I have stopped this medication and no longer have to worry about it, what are the long-term effects of processing ANY medication in the long run without my stomach, particularly the medications you see on my list? Do you know anything about that? What about new medications? Some medications have to be taken "on empty stomachs". Our guts can't ever be "empty". This affects our ability to get the intended effect of the medication. Not having a stomach to begin with effects our ability to absorb medicines the way they were intended for the human body. Very few physicians consider this. 

I am constantly ping ponged between providers. I am tired of this. I thought to involve GI on my team because most of my issues pertain to my GI tract. 

To make it clearer: 

I have an oncologist, but I don't have cancer anymore. He orders my labs and ensures I have my scopes done, but I am otherwise not a priority. He takes care of people in active treatment. That's fine. I accept that. 

My PCP feels specialists are better suited to care for my plethora of complicated needs but will order tests for acute symptoms. Ok. ((ping pong ping pong))

My neurologist keeps tabs on my tumors, particularly the ones that cause me pain, but he is a terrible pain doctor.(ping) So I have a pain doctor to manage my pain. I am happy with this arrangement. (pong!)

For my pulmonary nodules and chest CTs to follow them, I am ping ponged between a random pulmonologist (usually a fellow so there is zero continuity of care) and my PCP. I honestly don't think anybody cares about this aspect of my medical history even though one bout of inflammation looked like cancer. It's so fun to see that on a radiologist report. 

Of course, I have a general gyn, an endocrinologist (well, a NP) , and yearly mammograms. The list goes on! I am not even 40!!!!!!!!

But who is going to help me when my belly stops working again? Because it could happen again. Who is going to help me when I lose weight suddenly? Or when I develop intolerances? Or when I am faced with taking a medication that could harm me in the long run, but there is not enough knowledge to know this prior to prescribing to me? Or if/when scar tissue goes haywire and blocks my guts?

In my 13 years of dealing with this post cancer, post gastrectomy body, I have had colossal failures finding a GI who cares. In my experience, a GI is happy to order tests and then take credit for things they find. My first GI took special credit for being the reason my cancer was found (it was actually thanks to my PCP at the time (who I miss dearly); my GI fought doing the tests she ordered all the way!), but withheld information from me when one of my nerve tumors was found because he didn't think it was important. It was the root cause of my pain. He still told me I had IBS and was too sensitive to menarche pain. 

Most of my GI care in my 13 years of surviving was followed my SURGICAL ONCOLOGIST who sadly does not practice anymore, and I am left without someone who can help me. 

Gastroenterologists will find answers, but then play no real role in helping patients manage long term. I have not been proven incorrectly yet. 

 I have zero confidence in your ability to help me or anybody who does not have a stomach. While I hear that you told me that you specialize in working with stomach cancer patients, I am not impressed. So please, by ALL MEANS, go ahead and make sure the person who did my scopes is the one who follows up. He won' t. He hasn't even followed up about my scopes at all. Nobody has. The results were clear of course, but I should have still spoken to someone about plans for follow up care. A Joke! This hospital's GI department is a JOKE.  Based on my GI care to date, I feel better off without a regular GI. I can be my own GI! I obviously have more understanding of a stomachless body than you do. 

Most Sincerely,

A VERY TICKED OFF PATIENT