Exploring Food Fear in IBD Patients

Podcast Transcript

Scott Steele: Butts and Guts, a Cleveland Clinic podcast exploring your digestive and surgical health from end-to-end.

Hi again everyone, and welcome to another episode of Butts and Guts. I'm your host, Scott Steele, president of the main campus here at Cleveland Clinic and colorectal surgeon in beautiful Cleveland, Ohio. It's always great to have a repeat guest on, and today I am very pleased to welcome Dr. Madison Simons, a GI psychologist in the Department of Gastroenterology, Hepatology and Nutrition here at the Cleveland Clinic. And today we're going to talk a little bit about food fear in patients with inflammatory bowel disease.

Madison, welcome to Butts and Guts.

Dr. Madison Simons: Thank you so much for having me.

Scott Steele: So for those listeners who did not hear your last one, first of all, I highly encourage you to do that, but if not, go ahead and give us a little bit about your background. Where are you from? Where'd you train? How to come to the point that you're here at the Cleveland Clinic?

Dr. Madison Simons: Yeah, so I grew up in west Michigan, went to the University of Michigan for undergrad, and then I did grad school at Regent University in Virginia Beach. In terms of my postdoctoral training, I trained at Northwestern University in GI psychology specifically, and that's where I first began this integration of gastroenterology and psychology. My particular interest area is in the overlap with nutrition, and so I'm interested in the factors that precipitate and the consequences of dietary modification in patients with GI symptoms.

Scott Steele: Fantastic. And as I said, today we're going to talk a little bit about food fear in patients who have inflammatory bowel disease, or what I'll refer to today as IBD. So to start, can you share a little bit more especially about your role as a GI psychologist within the GI team and give our listeners a little bit of a high level overview about inflammatory bowel disease.

Dr. Madison Simons: GI psychologists really fit in this space when patients are receiving increased communication from their GI tract up to their brain, whether that's related to nerve-based changes, as in disorders of gut-brain interaction or an inflammatory bowel disease where there might be inflammation that's sending more signal up to the brain than we desire it to be.

When the brain receives that increase in communication, the brain's natural response is to monitor sensation, and it may feel anxious about what's going on. And so the GI psychologist sits in this space of can we decrease the amount of sensation the gut is sending to the brain and can we change the way that the brain responds to this sensation and help decrease patients' anxiety?

Inflammatory bowel disease is a chronic gastrointestinal condition characterized by inflammation, really that could be anywhere from the mouth all the way to the anus. And so these patients experience symptoms like chronic abdominal pain, bowel urgency, changes in their bowel habits, and they could have rectal pain or bleeding as well.

Scott Steele: Madison, what's food fear and is it particular to IBD patients or some IBD patients or can anybody experience it?

Dr. Madison Simons: Patients with all GI conditions are susceptible to food fear. In our IBD population, we see about 20% of our patients will say, "Yes, I have fear related to food or eating because of the GI symptoms that I experience related to that." These rates of food fear are different depending on the GI condition that you're working with, but any patient who has symptoms associated with the eating experience is susceptible to develop food fear.

Scott Steele: So can you walk us through what food fear looks like in the IBD patients and how it typically progresses from first symptoms to potentially restrictive eating patterns?

Dr. Madison Simons: Yeah, I think there's two sides of this. One, we see that food fear is really correlated with the amount of symptom anxiety that a person experiences, and this makes sense. If a person perceives their symptoms to be so very painful or very distressing when they have them and they associate eating with those symptoms, then they're naturally going to have food fear that results.

When we think about this development from the beginning of food fear on to very restrictive eating, there was probably an inciting event. Many patients can describe the first time that they ate and had extreme symptoms afterwards, and this can start small. Maybe I avoid only that food that caused a problem at first, but then I start to avoid foods that look like that food and then I start to avoid that whole food group and then I might avoid those peripheral groups around it and we can see how it cascades from there.

In the IBD group, they have an additional factor that contributes to this in that dietary therapy is often recommended for IBD as a way of managing the inflammation, and these diets can be highly restrictive. And so we're getting this feedback from our physicians to restrict the diet as a means of controlling the disease, and so that can be a different segue in where it's physician guided.

Scott Steele: So how common is it for IBD patients to develop food fear, and is there a subset of patients within IBD or personality types who make it more susceptible?

Dr. Madison Simons: We don't have good data yet on who are those patients who are going to flip over into food fear, so to speak. I think your patients that are at highest risk of this are those who experience high symptom fear and who say, "My symptoms are directly related to eating," I think this is going to be your most vulnerable patient group.

Scott Steele: So how do you differentiate, if you will, between quote-unquote legitimate dietary restrictions for IBD management and potentially harmful food fear behaviors?

Dr. Madison Simons: I think this is a really tricky zone within IBD because like I was talking about earlier, we are often communicating the message to IBD patients that it's totally acceptable for you to follow a very strict diet, for example, the specific carbohydrate diet or the Crohn's disease exclusion diet. Both of these are very restrictive in their nature and we say, "That's okay because it manages your disease. It might put you into remission." And so there's that side of things.

But if you have the flip side of someone who experiences symptoms after eating, that line of when is that reasonable response to symptoms versus when is it problematic, it's a gray zone there. If someone had the stomach flu the last time they ate a salad, we wouldn't balk that much if the person said, "Ooh, I don't think I ever want to eat salad again," but we're asking that of our IBD patients who have significant symptoms after they eat. We're asking them, "Can you go back and eat those foods?" So I think there's a lot of compassion to be involved from the provider side of how did this food fear come to develop and how can we support patients in expanding.

Scott Steele: Let's dig a little bit further here. So what are the most common foods, if any, that IBD patients develop fear around and how, if at all, does that impact their social and family relationships?

Dr. Madison Simons: I think the types of foods that create fear can be widely varied. Many of our IBD patients will talk about restricting roughage or green vegetables during their flare seasons in particular. We often see people moving into a more processed diet, processed carbohydrates when they experience significant food fear, as those foods tend to be digested well or the patients feel like they're digesting well. So it really varies what foods patients feel cause their symptoms the most.

Scott Steele: Okay. So I'm a patient at home and I'm listening to this podcast and I'm thinking, "Are the symptoms that I'm feeling actual food fear or are they something else?" So what are some of the more common food fear symptoms that you help patients with?

Dr. Madison Simons: I think there's a trajectory that I would use in this case, and the first step that we're just trying to establish is, can I make sure that I'm eating regularly throughout the day? And when I'm doing that with patients, I'm working with foods that already feel safe to them, things that they're already eating. We're just increasing the frequency of it. And then we work from there to expand how much we're eating at any given time until we reach adequate portion sizes.

And only then are we working to expand the diversity of the foods consumed, so once there is some sense of safety and security around food and eating and around symptom management, will I start to pull in different nutrients for the patient because we're trying to accumulate neutral to positive experiences around food and eating.

Scott Steele: So how harmful can food fear become if left untreated and how can a patient determine when getting help would be a good idea?

Dr. Madison Simons: There's probably two sides of this, one of which is the physiologic consequences of food avoidance, which might mean we have significant weight loss or we have micronutrient deficiencies like vitamin deficiencies. Those are cases where we have a physical consequence of the food avoidance. But the second side of this is that you may have patients who on paper they look great, all their labs look great, their weight is stable and maintained, but this patient spends a significant amount of time thinking about and planning around the food experience. They might say, "Eating is so burdensome to me, I have to plan everything that I do," and that's where we might consider it to be psychosocial impairment. And both of these patients are going to require support. They just might look differently when they come into your office.

Scott Steele: Truth or myth, truth or myth. Food fear eases up on its own over time as the IBD patient adjusts and gets used to the diagnosis.

Dr. Madison Simons: I think that is true in the ideal case, but as I talk with patients, the way I explain it to them is this. If as your symptoms become more stable, you find that you are staying just as avoidant to food or you're becoming actually more avoidant, that's a problematic area and that's one that we want to address together. I anticipate that the longer a patient is stable, the more that they will feel like they're able to liberalize their diet, but if they're stuck at a standstill, that's when we want to help to intervene.

Scott Steele: So what are some of the treatments or therapies that help IBD patients with food fear and how does that cognitive behavioral therapy fit in?

Dr. Madison Simons: A lot of the food fear work that I do is based on an exposure model, and this really comes back to what is the brain doing when we develop food fear? So the amygdala is the part of the brain that's responsible for threat detection, and the amygdala is entirely experience driven. It recalls all of the previous experiences related to that stimuli. In this case, food and eating.

The amygdala is not highly responsive to logical, rational thought processes. So when I'm working with a brain that's highly afraid of food and eating, I don't often try to rationalize our logic with that patient as to why we should liberalize their diet. That's, again, where building the safety and security around food and eating by making small exposures over time helps to rewire the amygdala so that it says, "Okay, I've accumulated enough experiences around food that this feels a little more doable for me." So I do a lot more of the behavioral exposure and helping the patient manage the anxiety that they might have about symptoms on the back end. Our goal here isn't that they're totally symptom-free, but do I feel like I can manage symptoms once they occur?

Scott Steele: So for patients listening out there, what would be your first recommended step towards addressing food fear while still managing their IBD symptoms effectively?

Dr. Madison Simons: I would say your first steps are just evaluating, am I eating frequently enough through the day? Am I responding to hunger cues when I get them where if I feel hungry, I eat? Those are our first steps is building that pattern for the brain to maintain a regular eating pattern. And from there, we can start to expand and take some steps. But when I'm working my way up an exposure ladder, I'm only changing one level of risk at a time. So if I'm wanting to become more comfortable in the social environment of eating, I'm going to stick with my same foods and I'm going to eat them in different settings, so I'm going to bring them to a friend's house, I'm going to bring them to a restaurant and eat, and I'm going to explore it that way.

If I'm wanting to explore different nutrients that I'm bringing in and I want to do that at home with a trusted companion at a time of day that feels comfortable to me, I'm going to do it in small amounts. So I'm just looking to create these experiences that are likely to have a positive outcome.

Scott Steele: So now it's time for our quick hitters, a chance to get to know you just a little bit better. First, what was your first car?

Dr. Madison Simons: I had a black Toyota Matrix.

Scott Steele: What year?

Dr. Madison Simons: 2009.

Scott Steele: Fantastic. What's your favorite color?

Dr. Madison Simons: Pink.

Scott Steele: What is a superhero power that you wish you could have?

Dr. Madison Simons: I think I wish I could fly.

Scott Steele: Fantastic. And finally, if you could go back to your graduating high school time and meet yourself, what advice would you give to yourself?

Dr. Madison Simons: Just to be patient and allow things to play out the way that they're playing out and to be confident in the process.

Scott Steele: Fantastic. So give us a final take home message to our listeners regarding food fear in the IBD patient.

Dr. Madison Simons: I'd say this. Food fear is biological. It's evolutionary. It's a normal part of the experience, and also it can feel devastating to the patient, and so I just want to validate that it's a normal part of going through these significant symptoms and we can also help improve it.

Scott Steele: Fantastic. And so to learn more or schedule an appointment with the gastroenterology team at Cleveland Clinic, please call the Digestive Disease Institute at 216.444.7000. That's 216.444.7000. You can also visit our website at clevelandclinic.org/digestive. That's clevelandclinic.org/digestive. Dr. Simons, thanks so much for join us on Butts and Guts.

Dr. Madison Simons: Thank you for having me.

Scott Steele: That wraps things up here at Cleveland Clinic. Until next time, thanks for listening to Butts and Guts.