The Story of My Gall

In the summer of 2016, I began to notice that my body had stopped digesting food in the usual way. Pain and pressure and the tremendous sense that my guts were paralyzed began to dominate my life. My food seemed stuck, and my belly blew up like a balloon in increasing levels of severity . I blamed it on stress and stayed away from the doctor. Previous experience told me there would be no help there, as stress causes illnesses that the system cannot see, hear or touch.

I thought I’d never again be well.

When I finally sat myself in my family physician’s  office, the burning epigastric pain pointed to ulcers as the likely culprit. But proton pump inhibitors and stomach-coating Carafate did not help in the least.

On the day of my endoscopy, I waited nearly an hour for Dr. Gastro, laid out in a gown in an endoscopy suite, while the anxious RN (who sensed the growing wait time) chatted with me about his career and family. I thought the oxygen mask and tubing, along with the plastic mouthpiece, would choke me to death. Prior to entering the endo suite, Dr. Gastro had visited with me in a curtained room and spent a total of 45 seconds before the procedure, performing a perfunctory prep consisting of rapid-fire questions  about my symptoms, while allowing me no time to answer. She proclaimed that my ascending colon was likely filling with gas, advised me to cut out gluten and dairy altogether and immediately. I sensed she had no idea of the weight of my pain. And how could she? She was managing truly “sick”  patients out on the floors that day.

Versed takes over quickly. I wished they would just send me home with it, and I could live outside of myself for the remainder of my life. At that point, I would have given anything for safety and relief.

The endoscopy was normal. I should have been delighted that my esophagus and stomach were so pink and perfect on the inside. And no sprue from celiac or ulcers or acid damage to be found. I was sent home with instructions to cut out dairy and gluten, no gum, no bubbles, no apples or beans or FODMAPs. [See the handout.]

Overwhelmed with the sense that my guts weren’t moving, I now believed I would have to live with it for the rest of my life.  There were no answers for me, and I didn’t know how I would come to live with the pain. I recalled the words of my family doc, who had exclaimed when I pointed to my upper right-hand side, “That’s your gallbladder! You’re young and healthy for stones, but I can order an ultrasound.” I had tried to follow the most likely route by proceeding with the endoscopy first (with special consideration for my out-of-pocket costs and a little bit of disbelief). Turns out my attempt at prudence backfired in the end and only added delays.

Patients become familiar with the barrage of statements in the mailbox, notices and questionnaires from the insurance carrier, bills from the hospital – for the nursing and endo suite time, from the clinic – for the gastro doc and the surgeon care, the radiologist, for the interpretation of the ultrasound, the surgery center, for the anesthesia and from pathology and lab for taking a specimen and writing a story about it.  After a year of payments, my financial ordeal did come to a close.

After the endoscopy… while living in limbo, every attempt to eat led to unbearable burning and the inevitable inflation of the balloon on my right side. I drifted in and out of waking dream-state such that dreams became nightmares and shifted back into dreams of fantastic sweetness.  Trauma brain took over, and I sat out back by the stream behind my house and wept. By then I couldn’t even pull on a pair of pants because the waistband seared my abdomen. I resorted to dresses at work, ate little bites of oatmeal, and sucked on popsicles to maintain my blood sugar.

Refer back to list of low FODMAP foods, said the institution. These fermentable oligo-, di-, mono-saccharides and polyols are wreaking havoc for you. After a few weeks, you will feel well, after you cut out fructose, garlic, wheat, milk, soybeans, lima beans, asparagus and stone fruits. It’s Irritable Bowel Syndrome or some sort of food intolerance, nothing more.

“Did you not hear me? I can’t eat anything!” I cried. “Something is terribly wrong.” (But no one was listening…)

I seemed to be so close to answers, and then came to recall again and again that my guts were frozen in time. The pain took over my sense of self, and when the burning became so hot I could barely feel anything anymore except the oblivion of the other side (death?), then my belly turned to ice.

Eventually, Dr. Surgeon reached in for my gallbladder but it didn’t come willingly. She had to increase the size of the incision during the procedure, for the stone had nestled and grown and the organ was grotesque with yellow-green swelling (when bile is static, it melds and hardens).

I had described the Stuck feeling, multiple times, and to multiple sets of shaking heads (kindly though they were). My story didn’t fit the textbook. When vindication finally came, starting with an ultrasound revealing a stone, leading to a HIDA scan demonstrating that the biliary fluid could not escape, the trapped feeling came to make sense to me. This is the way I experience my body, in flashes and metaphor, rather than in collections of symptoms. This is not, however,  the way physicians are taught to diagnose – or to understand.

Today, I find myself catching my breath sharply in memory of the horizon of pain, with no end in sight.

But now it seems obvious. As a clinic manager, I’d watched patients (also known as human beings)  wait months to see a doc,

Weeks for the next test,

days for the results,

more lag between,

waiting for schedulers and staff and processes geared

around systems of production.

And patients were caught in the gaps of that system, which was never designed for them. I’d reassured them and encouraged my staff to follow up, facilitate, make repeat phone calls, or sometimes to even recommend to wait and be “patient”. Radiology is backed up right now. So is the specialist.

Of being not-heard, I’m in good company. But I can’t blame anyone.

Eventually, the surgical report dated August 22, 2017 told the story: “Received labeled ‘gallbladder’. . . . The cystic duct is stenosed. . . . Opening reveals a single stone, yellow-green, measuring 2.1 cm in greatest dimension.” But that revelation was a long time coming.

The System

Has a mind of its own.

(Portions of this work have been previously published in Survive and Thrive:  A Journal for Medical Humanities and Narrative as Medicine.)