A Twenty-Something-Year Health Reset

me, before.

me, before.

me, after.

me, after.

These days - I think of the world as before and after:

Before, when I got to choose which food I liked, and I spit carrots on the floor, and I hid raisins in my pocket, and baked potatoes stayed wrapped in tin foil.

After, when a rare bacteria began to colonize my gut. Time slipped into a pattern of dislike because of discomfort, instead of dislike because of choice.

As an older child, and then a teenager, and into adulthood, my stomach rebelled against food.

I remember omelets, made fresh by my dad, hot on a saturday morning: and yet, eating one would cause cramping for the rest of they day. He had worked at a cafe! Omelets were his forte! And yet, the joy of melted cheese between hot eggs slipped away one day.

At school, I would eat a bite of my sandwich and my stomach would twist into a knot. In college, I sat across from my date and thought, “Which of these foods on the menu will make me the least sick?” Teachers questioned if I had an eating disorder, peers mocked my thin arms.

As a child, I assumed that this was normal: that people lived their lives with the same frantic anxiety that made a home in the pit of my stomach.

But then it got worse, and I found myself taking the bus from the U District to Urgent Care in Capitol Hill, and I heard the doctor telling me that it made sense that I could only eat popcorn, because fiber is good for digestion.

Fifteen years of sporadic doctors appointments. Fifteen years of hoping, maybe this doctor will figure it out.

And yet:

“We did all the bloodwork and an ultrasound. You just have IBS.”

“Take this medicine. Maybe see a therapist.” 

“Drink more water.” (this one was my favorite answer)

“Take a probiotic.”

“Cut out grains.”

“You’re actually losing too much weight. Have an avocado and almond butter with every meal.”

“Now that you’ve spent $2,000 on allergy testing, I’m here to tell you that I’ve never seen inflammation responses this high - cut it all out - except tofu.”

So I did. I cut away at the foods that I thought were harming me. I cut into the parts of my heart that were most vulnerable: if only I can meditate better, if only my diet were healthier, if only I processed more of my trauma, if only I see a more expensive therapist with my student loan money. I twisted the knife as I sat in the dark, picking popcorn kernels from my gums, badgering myself: why me?

Four months ago, I was surviving on smoothies and coconut yogurt when my new PCP looked and me and asked with confusion, “They never did a colonoscopy when they diagnosed you?”

I shook my head. They tested blood. They gave me an ultrasound. They gave me medication that made me dizzy and told me to take it before I ate something that bothered me. Everything bothered me. 

My new PCP, let’s call her an angel, ordered all the tests.

The new gastroenterologist, let’s call her angel #2, said, “We’ll get to the bottom of this,” before they injected me with propofol and I prayed for life.

At first, they found nothing. But the gastroenterologist refused to believe that, and biopsied my colon.

I remember getting the lab results. I began to shake as I read the words “human intestinal spirochetosis.”

I read all the journal articles I could - poring through words like “rare” and “commonly found in countries with poor drinking water.” I strike gold:

“Importantly, we found that CS was strongly associated with IBS, a functional GI disorder that is characterized by abdominal pain and a change of bowel habits. 42 Although the etiology of IBS is still unclear, there is evidence that suggests GI infections may play a role in the initiation and development of IBS.”

A real diagnosis. From contaminated drinking water?

There’s an ambivalence that hangs in the spaces between desperation and discovery.

When did this happen? Was I eight years old in Mexico? What about twelve in Fiji? Or maybe, it was on a backpacking trip? A diagnosis like this, with 15+ years of symptoms, leaves me with questions and no way to unearth answers.

Two weeks later: my infectious disease doc gets up from her chair and begins to leave. She pauses as gets to the door.

“I’m sorry everyone told you that you were crazy,” she says.

And now, treatment begins.

A new “after” approaches.