GI doctors have a strange aversion to talking about diet.
The day after my diagnosis with ulcerative colitis, I began to wonder: Should I perhaps start eating differently?
It was a reasonable question. My symptoms were diarrhea, bloody stools, and abdominal pain. Something was obviously wrong in there. The least I could do was not make it any worse.
I’d had a colonoscopy the day before, but afterwards, when the doctor told me my diagnosis, he hadn’t mentioned diet at all. I’d been too drugged to think then, but when the diet question occurred to me, I did an internet search. One website said to cut out fiber during colitis flare-ups. Another advised avoiding caffeine and alcohol.
I emailed my doctor. Should I be avoiding fiber, caffeine, alcohol, or anything else until my symptoms disappear? Are there any particular foods you do recommend?
To my relief, he wrote right back. There isn’t any specific diet recommendations for you, he assured me. Just be sensable.
I wasn’t too worried—yet—that he had misspelled sensible.
Thanks very much, I replied. Nagged by my internet findings, I decided to press on. I’m not exactly sure what a ‘sensible’ diet is—should I be avoiding fiber, for example, until my flare-up dies down? At this point, I’m afraid to eat anything at all, because just the little bit of chicken noodle soup I ate yesterday gave me a stomachache all night long!! 🙂
(I find it bemusing, in retrospect, that I typed a smiley face at the end of the email. I was so earnest!)
Again the response was swift and brief, this time from an assistant.
The doctor does not have any specific diet to follow. Generally a good idea to avoid high roughage foods (raw fruits/vegetables) during a flare. Also high fat foods tend to cause more stomach upset. The crohns and colitis foundation has some dietary information.
http://www.ccfa.org/resources/diet-and-nutrition.html. If you read this info, keep in mind you have proctitis and not ulcerative colitis or crohns disease. Let us know if you have any other questions.
By now I was feeling a twinge, just a twinge, of unease about my doctor and his office. I generally trusted them still—the colonoscopy had gone smoothly. But what was with the mixed signals? If I hadn’t emailed a second time, would they never have advised me about roughage? What if I hadn’t written them at all?
I was also relieved, though a bit perplexed, by the assistant’s declaration that I did not actually have ulcerative colitis. It was a comforting thought. Phew. But what did I have, then? Was proctitis just its own little syndrome?
And if I didn’t have colitis, why was I being sent to the Crohn’s and Colitis Foundation?
Of course, as I would later realize, I did have colitis. Proctitis is a type of colitis, as the assistant Carrie would explain to me a few weeks later. And yet it wouldn’t be long before I was told, again, by another doctor in the same office, that I did not have colitis—that proctitis was somehow different.
These doctors were probably trying to comfort me, downplaying the seriousness of what I had. But their statements were inaccurate and thus ultimately undermined my trust.
For now, I clicked the link sent by the assistant. The Crohn’s and Colitis Foundation was clear that diet could indeed affect my symptoms, although it was cautionary about one-size-fits-all solutions. It said discomfort can be reduced by cutting back on greasy or fatty foods, milk products, and high-fiber foods like nuts and raw vegetables. I appreciated its thorough, nuanced approach, and the assistant’s sending it to me…when I had asked my question for the second time.
Patients’ observations are dismissed as “just anecdotal.”
In the years since first publishing this post, again and again I’ve heard IBD patient accounts that resemble my own story. Our GI doctors refuse to talk to us about diet, and when we bring it up, they grow wary and reticent. They insist that diet isn’t linked to IBD—not linked to its onset, not closely linked to the onset or worsening of flares, and not linked to the maintenance of remission. They say this is what the science shows.
I realize I’m not the expert here, but I have to push back against this absurd pattern. Patients do consistently experience diet as a primary factor in our disease management. Of course we do! Our disease is in our gut. Of course what we eat affects it.
As everyone knows—even healthy people, even doctors—when your belly hurts, you don’t eat certain things, or it will get worse. We, the patients, discover foods, such as sugar or gluten, that seem to consistently trigger or exacerbate our flares. When we avoid those foods, voila!, we feel better.
A typical medical response to our stories about diet is that they are “just anecdotal.” I’ve come to view this word, “anecdotal,” as an intellectual cop-out, a patronizing way of dismissing patients’ real experiences and observations.
Once, when I was hospitalized and discussing treatment with a doctor, I told him I wanted to think about diet. As if to cut me off, he brusquely replied, “Diet doesn’t affect IBD.”
“It does affect many people,” I protested, craning my neck to look up at him from my hospital bed. “Including me.”
“That’s all anecdotal,” he said impatiently.
This infuriated me. I had just told him that diet does affect my IBD—not just the IBD of other people I’d read about, but my IBD, in my own experience. If he’d asked, I could even have supplied data to prove it, because by that time, I had been meticulously tracking my diet and symptoms for years. It felt like, because I wasn’t wearing a white lab coat or wielding a published scientific article, my words carried no weight at all.
There is science connecting diet to IBD.
But the doctor’s words weren’t just out of line because they were patronizing. They were also out of line because they were wrong.
There actually is quite a lot of science connecting diet to IBD. Much of this science is from just the last few years—but by 2016, when the conversation occurred, it was beginning to emerge.
For a recent example, here is a 2018 paper called, “Evolving role of diet in the pathogenesis and treatment of inflammatory bowel diseases.” The abstract reads:
Recent advances in basic and clinical science over the last 3 years have dramatically altered our appreciation of the role of diet in inflammatory bowel diseases (IBD). …Progress in the field of microbiome and IBD has demonstrated that microbiome appears to play an important role in pathogenesis, and that diet may in turn impact the composition and functionality of the microbiome.
Even more recently, here is a 2019 paper called, “Westernized diet is the most ubiquitous environmental factor in inflammatory bowel disease.” Its abstract states:
Recent reports on IBD therapy that replaced westernized diets with plant-based diets achieved far better outcomes than those previously reported in the literature.
In other words, science is finally arriving at the conclusion that millions of IBD patients have been telling their doctors for decades: diet does affect IBD and might very well cause it.
The need for a change
I don’t know how diet is addressed in gastroenterology fellowships. But I suspect that the problem of doctors’ reticence may be due to an overabundance of caution. Perhaps absence of proof gets conflated with proof of absence. Perhaps doctors need to legally cover their backs, promoting only treatments that are backed up by conclusive science.
But wherever the party line is coming from, it needs to change. When we’re first diagnosed with IBD, we should be given not only medicine, but also helpful resources for disease management and lifestyle factors that may affect our disease. The Crohn’s and Colitis Foundation, which my doctors finally sent me to after I pressed them, is a perfectly acceptable place to send patients.
If doctors themselves are uncomfortable advising on diet and lifestyle, they could simply say the following to a patient who has just been diagnosed:
There’s no scientific consensus about the relationship between diet and IBD, but many patients find that making changes in their diets can affect their symptoms. I can’t advise you on this, except to caution that if you change your diet, make sure you’re following good nutrition. But it may be useful to read the CCFA’s materials; that’s a good place to start.
Along with helping patients find critical information about diet, such a statement would have an important secondary benefit: it would increase our trust in our doctors.
When a doctor refuses to acknowledge something that’s so obviously true and even backed by science, it erodes our faith in everything else that doctor says. And if we don’t trust our doctors, we won’t turn to them for help. Instead we’ll turn to the internet and alternative practitioners and books, all of which are hard to vet and may or may not have useful advice. In the process, our outcomes might worsen.
Eventually, I would find a GI doctor I really liked. His attitude is captured in the sample statement above: he doesn’t endorse diet as a treatment for IBD, but he’s fine with my diet experiments as long as I follow good nutrition. As the science stands now, that’s the best I can hope for. I hope more GI doctors will move in this direction.
