Hidden options in health care - Part 1

IBS

Photo by Igor Miske on Unsplash

I have been meaning to write about this for years.  Now that my first two posts have centered on the “jib-jabs”, I want to explain how and why it has been so important to me, personally, to avoid them.

The story begins when I was a college student.  I think it is fair to say that I was more idealistic than most..  as an Econ student, I honed in on development economics as a way to have a positive impact on the world.  So when it came time for semester abroad, instead of choosing the then-typical options of England or France or Spain or Italy, I went to Sub-Saharan Africa.  It was an incredible experience - which I can get into in a future post.  In addition to all the wonderful, life-changing experiences I had there, I also picked up some unfriendly gut bacteria that messed up my digestion severely.

This was my first experience with a tremendously inconvenient, uncomfortable, life-limiting but non-life-threatening health condition.

When I first came back from Africa, the episodes were sporadic.  Maybe it was brought on by frozen yogurt, or alcohol, or rich food.. it was so hard to identify the triggers with any certainty.  This was the 90s, food allergies weren’t broadly a thing and IBS and IBD were not as well known or studied.  For over a year I toughed it out, sometimes ending up curled up in fetal position to deal with the stomach pain.  Other times I got rid of everything I had eaten, unintentionally, violently, every which way.  Yup, it was truly, literally a mess.

After I graduated, I moved to Boston and at some point decided to try to figure out what was going on.  What I remember is that I was alone in a new city, young and completely shocked when the doc mentioned stomach cancer.  They wanted to rule out anything life-threatening, so I went through a series of moderately uncomfortable and oddly intriguing tests.

The test facility was a funhouse of German branded machinery, the most memorable of which was a gray machine with arms that vaguely resembled something you would see at an amusement park, if they had painted rides gray and put them in sterile rooms with little rooms behind them, for the machine operator to stand in.  I was strapped into it, laying down, and it rotated around the room and up and down, like a ride, but slower and without any fun music.  I also got to drink a Barium milkshake, which is nearly inexplicable in taste - imagine phlegmy milk with a slight cherry flavor, overpowered by metal.  Not good.  I wore Doc Marten’s and a hospital gown as I walked the halls, sipping my barium shake. I got hit on by a young guy in a wheelchair, likely because half of my ass was hanging out the back of my breezy, ill-fitting robe.

The outcome of this adventure was positive, in the doc’s view, because I did not have stomach cancer.  This led to a diagnosis of IBS or IBD (I dont remember which and not sure I fully appreciate the differences between them - let’s go with IBS as it can be easily remembered if you imagine it as a doctor’s confession).  It seemed like if you had stomach problems and they did not know why, you had IBS: a diagnosis that describes the symptom, not the cause… “you are sick and I don’t know why”, but let me maintain authority by using a multi-syllabic scientific-sounding word to say it.

At that time there was a recommended treatment for my “condition”: anti-depressants.  I was definitely not going to take those.  For one - it seemed totally unrelated!  And potentially sexist.. or at least what we would now suspect as “gaslighting”.  My problem is stomach cramps and occasional literal shitstorms, and you want me not to feel bad about it??!!  The other reason ran deeper.  During my early teen years my mother had suffered a series of panic attacks.  At that time, the recommended treatment for anxiety was Xanax (!!!). Mom was the kind of person that hardly took an aspirin when she was sick.  But with a small army of kids, a relentless schedule and a spouse who could have used help moderating his own emotions, she was out of options.  When the lowest dose didn’t work, they told her to take more.  Ultimately she did not like how it made her feel (maybe bc it’s now a recreational drug people deliberately use to get high??!!) and she had terrible, debilitating headaches as she weaned herself off.  I was a middle schooler at the time, and it was rough on the whole family.  Bottom line - no way I was gonna take anti-depressants for my stomach issues. That was 1996.  My semester abroad was in 1994.

Life went on.. I could go a few months without a major incident, sometimes.. It was very clear that dairy was a bad idea, but every now and then I decided a certain dish or cheese was worth it.  By the late 90s, I had moved to California and on one of my first dates with my now husband, I drank one beer and ended up vomiting unexpectedly in an alley.

Thankfully, in 2002 I made friends with a colleague who encouraged me to try Chinese medicine.  At that point I had been “sick” for 8 years and I figured I had nothing to lose by giving it a shot.

At the acupuncture clinic she recommended, which was actually a teaching facility, the first doc I was assigned to suspected food allergies. So I went on a “food elimination diet”.  Kinda sounds like an oxymoron, doesn’t it?  Or maybe like an overzealous diet….which it was!  After a week or two of taking dairy out of my diet, we went on to grains.  I remember a time when I would snack on dried peas at work and eat rice for meals.  I lost weight, I was magazine-model skinny, hungry, and full of rage.

At the end of the multi-week no food diet, the doc declared that I did not have food allergies, and looked a bit lost. For my next appointment, I was reassigned to a new doc.  He was a white guy at the Chinese acupuncture clinic, which seemed a little strange to me at the time.  He told me that he had seen lots of patients like me, that he knew what it was, and he could fix it.  Hot tears streamed down my cheeks, which was embarrassing.  I was not sure if I could dare to allow myself to hope that he could be right.

I worked with that doc over a series of months. He ran a stool test and sent it to a parasitology lab (I have done this a few times now.. it’s memorable at the post office.. I smirked knowingly as I declined the insurance.  Nope, I did not need to insure my shit, ha!).  Results came back identifying a bacterial parasite I undoubtedly picked up in Africa, and we treated it with some herbal anti-parasite pills and lots of horrible-smelling home-brewed Chinese herbal teas.  By then I was married and my husband came to loathe the smell of them.. mostly the tea looked like mud, opaque and yellowy-green.  It did not taste any better than it looked.  But by Spring 2003, I had my last appointment, where we celebrated by sharing a delicious thin crust pizza with some of the students who had helped with my acupuncture treatments.  I was cured!!

Through eight years of illness, mainstream medicine offered intensive, expensive tests, an IBS diagnosis and anti-depressants.  Health insurance covered it.  Chinese medicine identified the problem and fixed it, with a lot of work on my end (diet changes, brew-at-home herbal teas).  I paid out of pocket, because acupuncture was not recognized at the time by insurance companies as having any proven health benefits.

Lessons learned.. mainstream medicine:

-uses expensive technology

-focuses on cancer (ruling it out, or identifying potential chemo patients, both?)

-is not above meaningless diagnoses

-may prescribe seemingly irrelevant treatments

-can be emotionally “out of tune” (eg celebrating ruling out causes when the patient is seeking an explanation)

-did not even try to cure my IBS, a clear fail compared to traditional Chinese medicine, which cured me

I realize this does not yet fully explain my formerly-private-and-protected personal health care choice, which turned my life upside-down.  Stay tuned for Part 2.