Catheters, Colonoscopies, and Radioactive Oatmeal

As I set out to write this post, I’m simultaneously working my way through a bowl of Cream of Wheat with bananas and pureed strawberry compote. Although Cream of Wheat is among the list of approved foods on the new diet I’ll be adhering to for the next month, if not longer, I’m struggling to finish my modest portion. The nausea I woke up with has yet to dissipate, and my upper stomach, a place I commonly experience discomfort, already throbs with pain.

These symptoms–along with bloating, early fullness, a lack of appetite, and occasional reflux and constipation–have troubled me on a near-daily basis for the last several months. They’ve made maintaining–never mind gaining–weight a challenge, and have turned mealtimes into a dreaded chore. Until recently, not having an explanation for my GI distress plagued me with worry and doubt; at times, I’ve wondered if what I’m experiencing is all in my head, if my mind is making me sick.

Over the past two months, in the hopes of obtaining answers, I’ve undergone a barrage of procedures, beginning with a colonoscopy and upper endoscopy in January. At twenty-four years old, I got to experience firsthand the abhorred prep which my parents have previously bemoaned, and for days afterward suffered from a burning sensation in my throat and stomach, the result of the many biopsies my doctor had taken. Neither procedure revealed anything abnormal save for some mild gastritis; as I was still symptomatic at a follow-up appointment three weeks later, my doctor ordered two more tests: an esophageal manometry and a gastric emptying study.

I wrote all about my traumatizing manometry experience on Medium–you can read that post here–but in summary, it’s a test that measures the motility of the esophagus by inserting a catheter through a patient’s nose, down their throat, and into their stomach, and then having them swallowing saline water at minute-long intervals. The procedure, which lasts for about forty-five minutes, is incredibly painful and invasive, and like the endoscopy, I felt the effects on my body in the days that followed. The results showed normal swallowing and motility, but also several instances of supragastric belching, or frequent, involuntary belching where air does not enter the stomach.

At the time, belching was one of my main symptoms, one which typically cropped up partway through a meal as well as during exercise and postural changes. Belching as often as I did–at least a hundred times a day–was hurting my throat, worsening my reflux, and making me anxious to eat around anyone other than my parents. As supragastric belching is a self-learned behavior, my doctor prescribed diaphragmatic breathing exercises to do before each meal; I was also supposed to breathe through my mouth whenever I felt an urge to belch. To my amazement, the exercises–along with a lot of mental willpower–worked, and within days I’d significantly reduced the frequency and severity of my belches. Though I experienced little improvement in my other symptoms, it was a small, much-needed win after a trying few months.

One month later, I returned to the hospital for my gastric emptying study, though instead of the bright and bustling Procedure Center, I found myself in a vacant, dimly-lit waiting area in Nuclear Medicine, proximate to a locked unit with foreboding Keep Out signs on the double doors. I was escorted to a room by a tech, where I consumed a bowl of gelatinous oatmeal that contained a small amount of radioactive dye. Then, at one-, two-, and four-hour intervals, I lay down on a narrow bed and a massive machine took a minute-long scan of my stomach, to measure the rate which with the oatmeal emptied.

It was a long, stressful morning (I’ve written a detailed account of my GES experience here), and I was surprised to receive the results that same afternoon, as my other tests had had much longer turnarounds. The results revealed that four hours after eating the oatmeal, thirteen-percent remained in my stomach, enough to meet the criteria for gastroparesis, a chronic condition–likely caused by my Ehlers-Danlos Syndrome–where the stomach digests food too slowly.

To finally receive a diagnosis after months of discomfort and uncertainty was a relief; that the diagnosed condition is incurable, unpredictable, and largely misunderstood, not so much. Because my gastroparesis is mild, the best treatment is dietary: eating low-fat, low-fiber, easily digestible foods in small portions several times throughout the day. For a vegan who loves fresh fruits and vegetables, nuts and seeds, and whole grains, these guidelines are far from ideal; however, symptom relief is my top priority at the moment, and if that means a lot of pureed soups, white breads and pastas, and applesauces, then so be it.

As my parents keep reminding me, this may be only temporary; for many, gastroparesis improves with time and self-management, and if that’s the case for me, then it’s likely I’ll be able to reintroduce foods in the future. For the time being, that I have a diagnosis and a plan to treat it gives me some hope and peace of mind. At the very least, I can be assuaged by the knowledge that what I have is not just in my head.