Once I had moved to Portland and the ordeal of switching health insurers was behind me, I could finally find myself a new GI doctor. I hadn’t had one for months. That worried me—I needed someone I could call on if my colitis took a turn for the worse, and that person needed to know my case history.
I combed the lists of Portland’s gastroenterology clinics and specialists, relieved to have many doctors to choose from at last. In Madison I’d had access to only one clinic and three doctors, two of whom had earned my mistrust within months. While I’d liked the third, he didn’t have any ideas for me besides strong, risky meds. I’d been so averse to that blunt-hammer approach that I’d parted ways with him, too, leaving me to fend for myself in experimenting with diet.
But surely, among these dozens of doctors, I could now find one who was more on the same page as me?
Reading doctors’ profiles online, it was hard to tell much about their approaches. Many gave lip service to “treating the whole patient,” but I couldn’t tell what that meant to them. Eventually, I settled on Dr. L, a youngish-looking man with East Asian heritage. His profile mentioned that he cared about patients’ “physical, emotional, and spiritual needs,” and I hoped that that philosophy, plus maybe his heritage, would make him more open to Eastern alternatives like my current macrobiotic diet.
Dr. L’s first available appointment was November 25th, more than four months after I’d started seeking him out. Although macrobiotics had been helping me, I was still not in remission—I often had bouts of fatigue, and in the past couple months I’d developed a lingering cough and fever that came and went. The day before my appointment, I spent several hours resting helplessly once again.
In the morning I felt feverish. I hauled myself through the motions of changing into jeans and even putting on jewelry for the appointment, and although it took effort, getting dressed boosted my spirits. At least I looked well.
Dr. L’s clinic was twenty minutes from my house, inside a large brick building that was part of a hospital complex. I found my way to the elevators and emerged into a spacious waiting room with nature scenes adorning the walls. The woman at the front desk greeted me warmly; I settled into a comfortable chair with my requisite multi-paged intake forms.
On one wall, a giant TV screen showed tropical fish swimming slowly in an aquarium, then faded to a peaceful scene of light rain pattering on a woodland stream. What a contrast between this place and the state-run health clinic!
A few other people were scattered around the room, most older than me. Did they all have inflammatory bowel disease? Did any have cancer? Were they afraid, or was this routine for them? I cast sidelong glances at them before turning to my forms.
When I’d finished filling out my health history, a nurse led me through a door, down a hall, and through all the familiar steps—height, weight, blood pressure. She left me in my room to wait for Dr. L, and I gratefully leaned my head against the wall and closed my eyes, feeling my cheeks still flushed with fever.
A light knock sounded and Dr. L entered. He looked just like his profile picture: a slight and soft-spoken man with a serious demeanor beneath an amiable smile. He seemed boyishly young, but something told me he was older than he appeared. His handshake was soft but firm, and he exuded a quiet confidence that could only come from experience.
Sitting across from me in his white lab coat, he asked about my history. I wondered if he had any inkling of the emotions swirling in me beneath the weight of my exhaustion: the wariness, the fear, the cautious hope. I had been waiting four months for this appointment. If Dr. L didn’t work out—and so far, no gastroenterologist really had—I would have to start all over again with a fifth GI doctor.
For perhaps the twentieth time since the previous October when my symptoms had started, I began describing my trajectory to a new practitioner. As I mentioned the date of onset, I felt a jolt of surprise: it had now been over a year since all this had begun. My voice began to waver at that thought. Dr. L’s brow furrowed in sympathy.
I pressed on. My doctors had prescribed various meds, I told him—first mesalamines like Canasa and Lialda, and eventually, prednisone.
He moved to speak. “Yes—I saw that in your intake forms. I was surprised they tried prednisone so early in your treatment.”
I nodded. It felt important that he understand how serious my disease was. “I know I only have proctitis, but my symptoms have always been really severe for proctitis. My illness has basically turned my life upside down. My symptoms often seem more like full-blown colitis—when a flare-up gets bad, I can have twelve to twenty BMs a day, and a lot of pain, usually up here.” I pointed to the spot where my pain often concentrated, on the upper left side of my abdomen. “I think that’s why they opted for prednisone.”
He frowned. “Did the prednisone help?”
“It helped at first, but then after a few days, my symptoms got bad again.”
Watching him closely, I explained what I had observed about the effects of my diet. I was convinced that cheating on my diet had impacted my symptoms during the prednisone, I said—in fact, I was convinced that my diet affected me more than medication did, in general.
As I spoke, Dr. L was developing a wary look that I recognized, having seen it in every other gastroenterologist I’d spoken with about diet. Preempting his protest, I hurried on: I was open to medication. I did want his suggestions. But I also wanted to explore diet, even just on my own, in conjunction with meds. Macrobiotics was working wonders for me, although I wasn’t in full remission.
As I had expected, he seemed to relax when I emphasized my openness to conventional medicine. Now he was nodding with me again.
When I finished my story, I asked tremulously whether he thought I would need to go on stronger meds. Since the prednisone hadn’t worked, did that mean I would next have to try immunosuppressants?
Privately, I wasn’t ready to try them yet if Dr. L said yes. But by now, on another health plateau for months, I was beginning to wonder whether I would, in fact, need stronger meds. Or, almost worse, need to choose between going on stronger meds and ever achieving remission.
“No. We’re not there yet,” he said quickly.
“Really?” I breathed a sigh of relief.
“Yeah.” He gave a little smile. “I was really surprised that your doctors put you on prednisone so early. There are a lot of other, gentler options that you haven’t tried yet. Have you heard of Apriso?”
I shook my head.
“It’s another form of mesalamine. You take it orally; it’s what I would recommend starting you on at this point, to see if it might work for you.”
“But the other mesalamines didn’t work,” I said, confused. “Wouldn’t that mean that mesalamine doesn’t work for me, in general?”
“Not necessarily. Often, one form won’t work but another one will,” he explained. “My philosophy is to always try the gentlest approach first. That way you’ll hopefully have fewer side effects, and usually, with mesalamines, there are no side effects at all. I would definitely recommend trying the various forms of mesalamine before switching to something stronger like prednisone. And even if Apriso doesn’t work, there are more forms we can try.”
I felt myself relaxing more. “I like that philosophy.”
Something about Dr. L was calming to me. It was both what he said and his general demeanor. In Madison, it had felt as though my doctors wanted to throw everything they had at my disease, to get it under control as quickly as possible. Their goal had been to get me out of my flare asap. But they had ignored my own comfort level with the stronger meds, and had also brushed aside my desire to understand what lifestyle factors might be contributing to my disease.
Dr. L was not so aggressive. He was slower, both in manner and approach. He seemed patient and clinical—not brusque, not excitable, just quietly attentive. I liked that he wanted to slow things down with my treatment, too.
It seemed like there were advantages to each approach with meds. The aggressive approach of my Madison doctors treated the flare itself as the biggest risk and aimed to nip it in the bud. But Dr. L’s gentler approach saw that meds didn’t always work, and that potential dependence on strong, risky meds was also a risk in itself.
Being gentler meant possibly tolerating flares for longer…but to me, it also felt like playing the long game. If we could find a gentle med that worked for me, in the long run, that would be better.
“I’d also like you to get an MRI,” Dr. L went on. “We can do a scan of your colon and upper intestines, to check for inflammation. Especially since you’re saying your symptoms can sometimes be severe, and that you feel pain up higher, it would be good to check whether there’s evidence of inflammation higher up than the rectum. But you’ve had a lot of scopes lately, so I don’t want to put you through that again.”
This made me even happier. No more colonoscopies or flex sigs for a while. Dr. L was factoring in the stress of a scope on my body, and he was taking my description of my symptoms seriously.
When I left his office, I felt hopeful and relieved. This wasn’t the kind of tenuous hope that had come with starting macrobiotics or with ordering Dr. Klein’s book in the mail. Dr. L had the weight of the medical and scientific establishment behind him. His methods had strong evidence to back them up, and that counted for something with me, scientist that I was.
Dr. L was not an integrative doctor like Andrew Weil, and I wished he was more enthusiastic about my experiences with diet—but he was a gastroenterologist, after all. A gastroenterologist was one of the people I needed in my life right now. He fit that role well.
Now I understood why my books had recommended finding a doctor I trusted. When I’d mistrusted my Madison doctors, I’d stopped following their advice, veering onto my own less-tested path of dietary experiments. But that may have put me in danger: without a gastroenterologist in my life, I was cut off from many treatments and options I might have needed.
I needed a doctor who followed my case, someone who came to know my colon over time and what it responded to, and someone who also understood my comfort levels with different approaches. My first meeting with Dr. L opened the door to him becoming that person for me. Over the coming years, he would remain my doctor, and my relationship with him would help keep me safe.
After my appointment, amidst my glow of happiness, my fever seemed to have receded into the background. I felt a little more bounce in my step.
