The past two decades have witnessed a significant rise in reported IBD cases amongst American adults, which has now hit around 2.2 million (1). In parallel with this rise, the number of studies examining the influence of diet on IBD symptoms has increased. But diet is such a personal phenomenon that uniquely affects all people, especially IBD patients, and is thus a complex issue to investigate scientifically. For example, some patients find that eliminating gluten, processed food, or dairy helps relieve pain or gastrointestinal discomfort. But most of us identify these foods by trial and error, trying to figure out what might be a trigger and what might soothe and nourish our gastrointestinal tracts. However, nutrition is not a game to be played.
Who can most effectively target the kinds of foods that are most nourishing and easy to tolerate for a sufferer of IBD? The patient. I believe there currently exists a significant hole in the current dialogue around the relationship between nutrition and the manifestation of IBD symptoms. The missing voice in this dialogue belongs to the patient.
Given that IBD is a complex condition that impacts every individual differently, we, as patients, represent primary sources who can give voice to the nuances of our diseases and collaborate with our providers to identify potential treatments for our particular cases. We are a uniquely powerful lens into IBD.
In my own hospitalization, I felt as though my nutrition-focused questions were not given the time they deserved. To streamline the treatment process for a particular patient, doctors should take into consideration the specific health journey, lifestyle, symptoms, questions, perspectives, and goals their patient communicates to offer more individualized medical recommendations and therapies, thereby actively shifting the current patient-provider dynamic.
While there are many essential elements of the patient-provider dynamic to reflect on, I am focusing on the great potential for collaboration, particularly on the patient’s side, in nutrition—a critical element of IBD recovery given that this condition manifests in the GI tract and can directly interfere with an individual’s digestion and nutrient absorption.
If your provider does not open the space for conversations centered around nutrition, you can take the initiative to be curious, ask questions, and direct the discussion in a way that will make the space most meaningful to you and your case. In my personal experience, I found online forums to be particularly helpful. In the seven years since my diagnosis, I have noticed a steady increase in the number and variety of IBD-specific community forums available. The most active of these online support programs are run and monitored by major organizations such as the Crohn’s & Colitis Foundation, which allows patients (whose diagnoses must be confirmed through a registration process before permission to post is granted) to exchange advice and personal experiences. Many patients use these platforms to seek out empathy directly from other patients. The existence of and patient reliance on these rich discussion hubs suggests that patients take advantage of these forums to engage in meaningful conversations, especially around the relationship between nutrition and IBD flare-ups.
To fight my own battle against IBD, I have been forced to recognize that my body is not, in fact, the enemy, but an entity I need to cooperate with and nourish. While nutrition is just one answer to the multidimensional puzzle that is IBD, we, as patients, exist in a tremendously vulnerable and powerless place when gravely ill, and often want to feel as though we can take action over our health and can make intentional changes in our routines to improve our symptoms. Through using knowledge, ideas, and inspiration gleaned from online patient forums as a foundation to transform the conversations that take place in the doctor’s office, I believe us patients can more clearly offer our providers the full story of how our illnesses impact all realms of our health—physical, personal, social, mental, and emotional. We are so much more than chronic illnesses—not “problems” that need fixing but instead beautiful, multifaceted entities on our own journeys to full health.
(1): “Inflammatory Bowel Disease: Data and Statistics,” Centers for Disease Control and Prevention (Centers for Disease Control and Prevention, November 9, 2021), http://www.cdc.gov/ibd/data-statistics.htm.