By November, Ron and I had insurance through Moda Health at last, so I finally had access to a large pool of doctors. I combed the lists of Moda-accepting gastroenterology clinics and specialists. I was looking for a GI doctor who was nearby and who might also be open to alternative medicine: my very own Perfect Doctor.
(Ironically, our new insurance plan didn’t require referrals from primary care doctors–so my tantrum last month had been moot. Still, I was grateful for having shouted at the woman in the Care Oregon clinic. That incident had given me confidence that when push came to shove, I would stand up for myself.)
Reading doctors’ profiles online, it was hard to tell what they truly believed. Many gave lip service to “treating the whole patient,” but I couldn’t tell what that meant to them. In my experience, gastroenterologists were pretty focused on the digestive system. Eventually, I settled on Dr. L, a youngish-looking man with East Asian heritage whose profile statement mentioned that he cared about patients’ “physical, emotional, and spiritual needs.” I hoped that those words, plus perhaps his heritage, would make him more open to practices like Traditional Chinese Medicine or macrobiotics.
Dr. L’s first available appointment was November 25th, more than four months after I had started seeking him out. My lingering cough and fever had risen again this week–the day before my appointment, I spent several hours resting helplessly, captive to my fatigue. When I awoke in the morning I still felt feverish, but decided to try a new, more empowering tack: pushing through instead of resting. All my life, I’d been taught that you should rest when you have a fever, but I was thinking now about our cross-country move and our hike in the Black Hills. To my surprise, my feeble energy had increased on that hike. What if this fever was not a cold, but was related somehow to my colitis? Maybe rest wasn’t what my body needed. Besides, I somehow had to get to my appointment–Dr. L’s clinic was twenty minutes’ drive from our house.
I hauled myself up and labored through the motions of changing out of sweats and into jeans, even putting on jewelry. Although it took effort, getting dressed boosted my spirits. At least I looked well.
The clinic was 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 and I settled into a comfortable chair with my requisite multi-paged intake forms. A few other people were scattered around the room, too, most of them older than me. Did they all have inflammatory bowel disease? Did any have cancer? Were they afraid? Or was this routine for them?
When I was finished filling out my 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. I gratefully leaned my head against the wall and closed my eyes, feeling my cheeks flush with fever. So far, my energy wasn’t dramatically rising or subsiding–it just was what it was. Perhaps it was best to push through on days like today, trying to overpower my fatigue and get more done.
A light knock sounded. Dr. L entered: a slight and soft-spoken man with a studious, serious demeanor beneath an amiable smile. He seemed boyishly young, but something told me he was older than he appeared and just ageing well. His handshake was soft but firm. He exuded a quiet confidence that could only come from experience.
Sitting across from me, he asked about my history and I wondered if he had any inkling of the emotions swirling beneath the weight of my exhaustion. The wariness, the fear, the cautious hope. I had been waiting four months for this appointment. If he didn’t work out–and so far, no gastroenterologist really had–I would have to start over again with a fifth GI doctor.
For perhaps the twentieth time, I began describing my trajectory, beginning in October 2014. The date surprised me: it had now been over a year since all this had begun. My voice began to waver. Dr. L’s brow furrowed in sympathy.
I pressed on. My doctors had prescribed various meds, I told him–mostly 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 about the effects of my diet. I was convinced that cheating on my diet had impacted my symptoms during the prednisone. In fact, I said, 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 had 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 relieved 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? That was what my last GI doctor in Madison had offered. Privately, I wasn’t quite ready to try them yet if Dr. L said yes. But by now, on the same plateau for months, I was beginning to wonder whether I would, in fact, need stronger meds. Or almost worse, need to choose between stronger meds and true 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, but Dr. L was not so aggressive. He seemed patient, and, well, clinical. All of my other doctors and naturopaths had been either brusque or engaging, but he was neither of those, not even particularly engaging. He was, instead, quietly attentive. His focus and seriousness made him seem almost boring, and I could tell he was conventional, comfortable in his white lab coat. But something about his undramatic, understated style was slowing me down, making my inner gears take on his more measured pace. I liked that he wanted to slow things down with my treatment, too. He was playing the long game.
“I’d also like you to get an MRI,” he 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.”
When I left his office after our appointment, I felt hopeful and relieved. This wasn’t the kind of hope that had come with ordering “Dr.” Klein’s book in the mail, or with meeting Dr. S, the naturopath–I had been more naive then, just weeks ago. Both of those practitioners were fond of experimental treatments that were not backed up by much science. But Dr. L had the weight of the medical and scientific establishment behind him. He was not an integrative doctor like Andrew Weil, and I wished he was more enthusiastic about my experiences with diet–he was more conventional than I had hoped. But he was a gastroenterologist. That was what he was supposed to be, after all, and a gastroenterologist was one of the people I needed in my life right now. He fit that role well. He seemed likely to actually listen to me and not make mistakes, to take seriously my insistence that I was not in remission, and to treat my body as gently as possible. I had been burned several times before, and by now my trust was something any doctor would have to earn over time. But so far, I had a good feeling about this one.
Amidst my glow of happiness, my fever seemed to have receded into the background. I felt a little bounce in my step. Maybe, while I was out, I could get some errands done.