After my diagnosis with ulcerative colitis, I began earnestly reading books and websites about my complex disease. Remission was going to be a matter of trial and error. I would need to work closely with doctors to figure out what was best for my body, and my books said to find a gastroenterologist I trusted.
I lived in Madison, Wisconsin and there were various GI clinics in town, but my health insurance only covered one single clinic. There were only a few doctors there to choose from. Several weeks after diagnosis, I would realize this was a problem.
The doctor who’d first diagnosed me had been flippant about my disease and had prescribed me the wrong med. I’d been grateful when a physician’s assistant, Carrie, had later caught and corrected the error. In the weeks since then, she’d taken me under her wing. She had answered my questions over email, and I was relieved and grateful to be in her caring hands, even though she wasn’t an MD herself.
For a while, everything went well with Carrie. At first, on the Lialda and Proctofoam she’d prescribed, my symptoms dramatically improved. Instead of five or more bouts with diarrhea each day, I only had two or three. There was less blood, less pain, less urgency. These meds seemed to actually work!
I was doing everything I could to help things along. Every night, I diligently took four huge Lialda pills, and I used my trusty Proctofoam three times a day. As I lay on the couch waiting for the foam to infuse into my colon, I worked my way through the four colitis books I had recently checked out from the library. And I ate only my new diet, avoiding fiber and whole grains and legumes, sticking to meat and refined grains and almond butter and applesauce.
The more I read, the more questions I had. Should I try to get into complete remission before trying for a baby? How risky was a flare during pregnancy? Should I try to gain weight, as a buffer against more diarrhea? I emailed these questions to Carrie, explaining proudly that I’d been reading up on colitis.
She suggested we meet again. Then she added:
While you wait to visit with me, you should go on ccfa.org (Crohn’s and Colitis Foundation of America) ONLY. This is a very patient-friendly website and is so helpful. Please try to stay away from other sites as there is lots of badness out there too. You will drive yourself crazy.
I knew Carrie was trying to be protective, but her advice surprised me. I had a master’s degree in environmental science, and my books and Googling had brought me comfort and a sense of empowerment. I felt she had missed the mark here, even though I had already encountered some of the “badness” she’d mentioned.
Carrie and I met, this time also with my husband Ron. She answered all our questions. As time passed, I sometimes emailed her with new ones, and she always answered promptly, which I greatly appreciated. She wasn’t an MD, but I was beginning to feel she was the “doctor I could trust” who my books described.
After twenty days on my new med regime, my symptoms had unfortunately plateaued. I didn’t have a lot of diarrhea, pain, blood, urgency, or fatigue, but I had some of all of them. It was all livable…but I wasn’t well enough to try for a baby. Something was still wrong inside me.
I wrote Carrie again, describing my ongoing symptoms. My condition seems to have plateaued, I added. I’m guessing I’m still at least a little inflamed. What should I do?
Her response wasn’t what I’d expected. You can stop the proctofoam and continue the lialda. If you continue with problems or regress, then we might try a short course of prednisone.
This confused me. If I wasn’t yet in remission, why would I stop one of my meds? Did Carrie think I’d continue improving on my own?
To make sure I understand, can you explain the logic behind stopping the Proctofoam? I wrote. Since I’m not yet in remission, I’m worried about reducing any of my meds—worried that I’ll just return to my previous state.
Days passed. For the first time in the month since I’d met her, Carrie didn’t respond.
Uneasy, and anxious to know whether I should really discontinue Proctofoam, I tried emailing my other doctor. He wrote right back. You still have limited inflammation in the rectum and I’m not sure why the Proctofoam was discontinued. So, I have reordered it.
Now I felt relief mixed with confusion. It made sense to continue the Proctofoam and to have a doctor agree that I wasn’t in remission. But it was unsettling to rely on two people who disagreed with each other about whether I should take the drug.
It occurred to me that I’d been taking these drugs without understanding them at all, without questioning what they were doing inside my body or why they’d been prescribed. Maybe, if my doctors disagreed, I should learn more about the drugs myself.
I looked up Lialda. Its active ingredient is mesalamine, a corticosteroid that replaces the cortisol that’s normally produced by the body. Cortisol is a stress hormone associated with inflammation, and somehow, by replacing the body’s natural cortisol, mesalamine interferes with inflammation. Proctofoam does something similar.
This was more than I’d understood before, but it still felt vague. I emailed both doctors again, this time asking for more details on how the meds worked. Neither responded.
When I picked up my next refill, I told the pharmacist my concerns and asked if he knew how the meds worked.
“I don’t know much detail, either,” he admitted. “But it looks like Proctofoam’s more for treating symptoms, whereas Lialda’s been shown to induce remission.”
I nodded, letting out a breath. “That’s already more than I understood before.”
He smiled. “Honestly, even the doctors often don’t know exactly how a lot of medicine works. You’d be surprised—science hasn’t figured out the mechanisms behind everything yet. They just know that in trials, certain meds work better than others, and they know which side effects are likely.”
This was news to me. I had assumed that, when a doctor gave a patient a drug, the doctor knew exactly what the drug was doing in the body. Perhaps, even to doctors, the body was to some extent a black box. Maybe they hadn’t answered my question about how the drugs worked because they themselves didn’t know.
But I wished they’d responded at all, even just with “I don’t know.” The pharmacist’s “I don’t know” was a relief to hear. It was an answer, albeit an incomplete one.
I returned to my apartment and my most pressing question: should I or should I not continue the Proctofoam? I still wasn’t sure. The MD doctor had prescribed it, but Carrie, the doctor I trusted more than him, had wanted to discontinue it. Why? Was she worried about side effects if I used it too long?
I had read that some corticosteroids can produce side effects over time. Even rectal foam or suppositories can enter the bloodstream through the delicate lining of the rectum, wreaking havoc on the body. Maybe Carrie was anxious for me to stop Proctofoam, even before remission.
I emailed her twice more. Again, days passed and I was met with stubborn silence. My unease grew. The trust I’d had in Carrie was beginning to erode.
A conspiracy theory began forming in my mind. What if there was danger in taking Proctofoam too long, and Carrie was worried, but she couldn’t tell me because the MD disagreed? He was the doctor who had prescribed the wrong meds, after all. He could be wrong about this, too. When I used Proctofoam lately, I felt a burning sensation. What if the drug was slowly burning a hole in me?!
I emailed Carrie a third time. No response.
I finally called her and left a message. To my relief, she called me back the same afternoon. (Her calling also fed into my theory, though. Maybe she was uncomfortable putting things in writing!)
I repeated the question I’d asked four times via email: Why discontinue the Proctofoam? Why did she and the other doctor disagree?
“Oh, he and I don’t disagree,” she said dismissively. Whereas in our appointments she had been warm, she now sounded brusque, and not at all pleased to hear from me. “I just misunderstood your first email. I thought you were saying your symptoms were getting better, so I thought we could start weaning you off the Proctofoam. I didn’t realize you were still having symptoms.”
My stomach swooped. Carrie had shepherded me through a frightening month of illness, and her warmth had helped me feel as though someone was looking out for me. Her dismissive tone and words now felt like an abandonment.
My first email had made it clear that I wasn’t in remission; that had been the point of the email. Maybe she’d misread it, I thought…but she could easily have responded to my later emails and clarified things. Instead, I had the distinct impression she’d been avoiding me, and avoiding putting her error in writing. Her silence had caused me extra worry that I didn’t need. I already had enough worries.
My trust in Carrie had been shaken. Since the other doctor had prescribed the wrong med, that meant I now didn’t fully trust either of my two doctors. Neither seemed to care much about my emotional wellbeing. They seemed to hope I’d stop asking so many pesky questions, stop trying to really understand my disease, and just fade back into the woodwork. I felt as though my ongoing symptoms and questions had become a nuisance.
The problem was, I was running out of doctors.
In the coming months, I would have the opportunity to change doctors a few more times, due to a twist of fate: Ron and I were about to move across the country, so we would get to change health care plans. Eventually, I’d find a GI doctor I trusted. And I would come to believe that my trust in him was all-important, just like the books said.
But in the spring of 2014, I was stuck with the single GI clinic my health plan covered. My predicament illustrates a key reform needed in the American health care system: the elimination of “in-network” and “out-of-network” providers, or at least the broadening of networks so patients can shop among doctors.
If I had lived in France or many other industrialized countries, I could have had access to the dozens of other gastroenterologists in my city. I might have connected sooner with a doctor who clicked with me. That would have saved me grief and helped my symptoms get under control sooner.
It is important to find a GI doctor you trust. The trouble is, in the US health care system, you may not have much of a choice.
