Category: Blog

Guest post: living with Crohn’s disease

This is a guest blog post written by Morgan Katsufrakis, a soon-to-be dietetic intern who has been helping me out this summer. Here she shares her personal experience living with Crohn’s disease and how it has affected her relationship with food.

Since I was seven years old, I have been complaining about my stomach hurting. It was a running joke in my family, anytime I opened my mouth my family would finish my sentence, “my tummy hurts.” For years my complaints were ignored by doctors; telling my mom that I was an anxious kid, and my nerves were making my stomach hurt. For years, I wasn’t listened to; for years I had to pretend that this pain I felt every day was all in my head. Until I was twenty-two and was finally diagnosed with Crohn’s disease.

Crohn’s disease is one form of IBD (Irritable Bowel Disease), and the other is Ulcerative Colitis. They are autoimmune diseases that cause inflammation within the digestive tract. Ulcerative colitis is specifically located in the colon. Whereas Crohn’s can be inflammation anywhere within the digestive tract (mouth to anus).

According to the Crohn’s and Colitis foundations, “approximately 1.6 million Americans currently have IBD, a growth of about 200,000 since the last time CCFA reported this figure (in 2011). As many as 70,000 new cases of IBD are diagnosed in the United States each year.” That’s about 1% of the population, so it is relatively rare.

When I tell people I have Crohn’s, many simply assume I go to the bathroom a lot. It’s frustrating to explain to people that I deal with more than just the frequent urge to go to the bathroom. I struggle with constant abdominal pain, bloating, nausea, loss of appetite, and the hardest part, my anxiety around food. I am always worried about what foods will trigger a flare. I’m nervous about eating at social events because I may unexpectedly become ill. It’s a constant mental battle around whether I should eat or not.

The link between eating disorders and autoimmune diseases like IBD has not been researched enough. There are signs suggesting that people with autoimmune diseases are likely to also have an eating disorder. Some research suggests there is a deeper biological reason for this, however, they don’t understand why. To me, it makes sense when I look back on my childhood and into my teenage years. I spent so much time in pain and fear that the next meal was going to hurt my stomach that by the time I was diagnosed, I had developed eating behaviors and restrictions that I didn’t know how to break.

In high school, I had fears around food that I wasn’t consciously aware of. I ate specific foods every day because I knew they wouldn’t make me nauseous. I was always hesitant to try new meals or eat at a friend’s house because I didn’t want to get sick. High school was a brutal place, kids were mean, and they bullied me and created even more food insecurities.

I was always a slender teen but having an undiagnosed disease, like Crohn’s, made my weight fluctuate a lot; and bullies would grab on to that. In a flare I would not eat much because of the pain, so I would drop weight. Kids gave me the nickname “cardboard” because I was skinny and “flat on both sides.” When I was out of a flare, I would eat more consistently and put on weight. During these times, I was called “chunky”, or my shirts were “too tight.” I was in a constant battle, and I never realized how conflicted I was with my body until I was much older.

When I was officially diagnosed at the age of twenty-two, the doctors put me on steroids right away to help with the inflammation. I put on weight relatively quickly being on steroids, and I was feeling the best I had felt in years. But my brain was filled with the negative thoughts of my high school bullies: “you look really big,” or “is that shirt tight enough?” And it didn’t help that when I did start putting on weight, my family would comment: “you look healthier now,” or “you look better with meat on your bones.” From then on, I used Crohn’s as a crutch to cover up my disordered eating, making comments like, “Oh, I can’t eat that, it will upset my stomach,” “Oh no, that’s too heavy for my stomach, I will get sick,” or “Oh, I can’t eat right now, I don’t feel good.”

It took me a long time to realize that the food restriction and fear of food was causing so much disruption in my life. I finally got to a point that I was so scared of food and so restrictive that I became severely depressed.

I sought out help. I spent the first year with Crohn’s trying so many diets to help with symptoms: Anti-inflammatory, Simple Carbohydrate diets, Low FODMAP, potato diet…you name it, I tried it. When none of these worked for me, I started researching nutrition on my own and reading other people’s experience with Crohn’s.  I realized that I didn’t need a special diet. I needed a healthy relationship with food!

I’m still mending my relationship with food but there are a few things that have helped me through the years. Before I sit down for a meal, I say a few positive things about the meal; reminding myself that I will not get sick from this food. The food is going to give me energy for my day, and how thankful I am to have this meal. I also remind myself that it’s not what I eat but it’s who I am when I eat. If I start a meal off panicked that it will hurt my stomach or tell myself that it’s not a “good enough” meal, then it will make me sick no matter what it is. Mindset is key and it takes endless practice and patience. 

Additionally, I started implementing new ways of eating and started learning to love food again. This process made me realize how much I wanted to become a dietitian. I want to help others struggling with a new diagnosis with no idea where to start, and to show them how the food they eat can help with symptoms AND can be enjoyable. As I continue with my schooling, I’m conscious of my “whys” and it motivates me to continue to pursue helping someone else’s life with food and nutrition.

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Morgan can be found on instagram at morgan_kats_health, where she posts about health, nutrition and living with IBD.

A word about diet culture

I talk about diet culture pretty frequently – I almost always bring it up with clients, and I’ve mentioned it in most of my blog posts so far. In this post, I define diet culture and share a few thoughts on how it affects us and what we can do about it.

In 2019, the diet industry grew to a $72 billion industry, and it is still booming. Its impact is perhaps most obvious in the media – on television, in our Instagram feeds, in advertising we hear on the radio. But we also hear diet tricks and tips in our workplaces or out with friends, and are inundated with dieting books and weight loss programs. Diet culture refers to the belief system underlying this massive industry, and which nowadays permeates our society in countless ways. Here’s my definition of diet culture: it’s a belief system that promotes thinness as the ideal, prescribes weight loss as a way to increase happiness and self-worth, and assigns moral values to food choices. In the process, this mindset oppresses those who don’t match the ideal and convinces people they need to spend their money and time on shrinking their body.

You don’t have to be on a diet to be enmeshed in diet culture. In fact, it’s pretty hard not to be. Starting from a young age, we pick up diet culture messages and learn that our bodies don’t look like they “should.” These messages come in many different forms and places, and we all hear and see them constantly throughout our lives. Sometimes diet culture comes across in obvious ways – such as advertisements for a new fad diet, before and after photos, or an “anti-obesity” campaign. Sometimes it is more subtle – praise from a friend for looking “thinner,” a fat joke on a TV show, or comments like the ones I’ve been hearing recently about weight gain fears during the pandemic.

Christy Harrison of the Food Psych podcast and author of the book “Anti-Diet” has a nickname for diet culture: “It’s a sneaky, shape-shifting thing that robs people of their time, money, health, happiness, and so much more, which is why I’ve nicknamed it The Life Thief. It can be hard to spot, and yet in Western culture, it’s everywhere.” 

Let’s be clear: dieting doesn’t work. Research shows that dieting actually leads to weight gain over time, as it disrupts our body’s natural weight regulation. Moreover, dieting often leads to weight cycling (yo-yo dieting) which is far more harmful to health than staying at a higher weight. Diet culture and all the messages that come with it are distracting people from more important matters, weakening their body image, and setting them up for failure. If dieting actually worked, I suppose it wouldn’t be a $70 billion dollar industry – but people feel they are the ones to blame for their dieting failures, and so they keep going back to it, even though dieting is repeatedly failing them.

I’ll share a couple thoughts on ways you might lessen diet culture’s impact in your own life.  

First, perhaps it’s time to change up your social media feeds.  Clear your feeds from accounts that promote weight loss, encourage dieting, or talk about “good,” “bad,” or “clean” foods. Stop following hashtags that make you feel bad about your body, that lead you to make unhelpful comparisons, or that equate thinness with improved health outcomes. And add some accounts that normalize larger bodies! Following people of a diverse range of body shapes and sizes can be a powerful way to heal, to reduce internalized weight stigma, and to simply be exposed to and reminded of the fact that bodies come in all shapes and sizes, and that’s normal. If you need some recommendations, check out this article, which lists body positive Instagram accounts in different spheres, including activists, yogis, fashion, and more.

Second, get rid of the dieting tools! The scale, the weight loss app, calorie counting, food rules – you don’t need them. It can feel really scary to let go of these things. This way of thinking and being feels unknown and foreign to many of us who have grown up in diet culture. Reading HAES-informed books, listening to podcasts, and talking with a weight inclusive, non-diet therapist or dietitian can be supportive resources as you let go of the dieting mentality and move toward intuitive eating and body acceptance. A few of my favorite resources to recommend as you get started include the podcasts Food Psych by Christy Harrison and Body Kindness by Rebecca Scritchfield, and the books Nourish by Heidi Schauster and Body Respect by Bacon & Aphramor.

You can see why I talk about this a lot. Diet culture makes it really hard (but not impossible!) to recover from an eating disorder. It makes it really hard to learn that you don’t have to restrict food, avoid food, or diet to be healthy. It makes it really hard to accept your body as it is and to know your self-worth. We have to talk about diet culture, do the important work of dismantling it, and move toward creating a culture of acceptance.

My Approach Part Two: Intuitive Eating

This is my second post in my series on my approach as a nutrition counselor. To see my first one on my Health At Every Size (HAES) approach, go here.

Intuitive Eating: the concept and principles

Much of the work I do with my clients is based around intuitive eating, an increasing well-known framework for creating a nourishing relationship with food and movement. I think intuitive eating comes across as being quite simple – it’s just about paying attention to hunger and fullness cues, right?  Well, that is a piece of it – but it’s actually quite complex and can take a long time to rediscover and implement. (Rediscover because we are all born intuitive eaters!) Intuitive eating is a comprehensive and dynamic concept that involves not only instinct, but also our emotions and our thoughts. In short, intuitive eating is all about reconnecting to your body’s wisdom by listening to your bodily cues, paying attention to your emotions, and thinking rationally about food, eating, and movement.

Intuitive eating is broken down into ten principles; I won’t list them out here, but if you’d like to read through them head over to the intuitive eating website. The purpose of the ten principles is two-fold: first, to cultivate attunement to bodily cues and inner wisdom, and secondly, to remove obstacles getting in the way of that attunement. For example, the first principle is “reject the diet mentality.” Dieting is one of the main disrupters to our ability to listen to our bodies. By learning to reject dieting in its many forms, we are working to remove a huge obstacle getting in the way. The second principle, “honor your hunger,” is about cultivating one’s ability to tune into the bodily cue of feeling hungry. The rest of the principles work in similar fashion by removing obstacles and cultivating attunement.

Intuitive eating in practice

In my practice, intuitive eating is a framework I always come back to. If my practice were a batch of cookies, Intuitive eating would be the sugar. No sugar, no cookies, though sugar of course isn’t the only component. (HAES, which I talked about in a previous post, would be the flour! A random analogy but I think I’ll keep running with it in future posts 🙂 )

I’m a huge fan of practical, hands on work – and Intuitive eating has so many practical applications. I jump around the ten intuitive eating principles as fits the flow of my client sessions and the values of my client. Through the intuitive eating lens, we may explore emotional eating, lingering dieting tools, or what fullness feels like, for a few examples. Intuitive eating pretty much shows up in all my sessions in some form or another. This is due largely to the fact that Intuitive eating is well supported in the research as not only improving one’s relationship with food, but also leading to improved health outcomes (it is very much tied to HAES in that way).

The end goal of all this work is increased satisfaction with one’s eating experience. Dieting takes things away, food rules set the stage for guilt, but the purpose of intuitive eating is to create that sense of wholeness around your eating experience. In short, to have a relationship with food that brings joy and nourishment, which is what Mentha Nutrition Counseling is all about!

Resources

-Are you an intuitive eater? Take the Intuitive Eating Assessment Scale quiz, adapted from research studies, to find out.

-Want to see the research? Intuitive Eating has been picked up by many researchers, with at least 100 (very positive) studies looking at the topic. Here is an updated compilation of all the studies from the intuitive eating website.

-Read the book! It goes through each of the ten steps and has loads of case studies and tips.

–This workbook came out recently, and I actually really enjoyed reading through it. It is super practical, which I love, and it asks some really good questions. It would take a while to work through all the content!