Living with inflammatory bowel disease makes it tough to have a positive relationship with food. This can be a slippery slope for someone with a history of disordered eating.

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I have spent countless hours staring at plates of food, wrestling with an overwhelming fear that makes eating the tiniest morsel feel impossible.

There are two beasts stoking this terror — one physical, one mental.

The mental culprit is a latent disordered eating monster that I buried in denial following its reign over my teenage years. Second up, and particularly vicious, is a complex combination of gastrointestinal conditions, most notably ulcerative colitis, an inflammatory bowel disease (IBD).

Thanks to this toxic combination, eating is frequently excruciating at every stage of the process. Psyching myself up to prepare food, chewing and swallowing. dealing with savage stomach pain as my body tries to digest whatever offering I’ve managed to get down my throat — it’s all a drain on my energy.

I’m not alone.

In one small 2020 study, researchers surveyed 109 people with IBD and found that while 13 percent met screening criteria for an eating disorder, 81 percent showed signs of disordered eating. This means that they don’t meet the criteria for an eating disorder but engage in disordered eating behaviors — such as emotional eating, binge eating, strict dieting, or restraint — that are risk factors for eating disorders.

“IBD may lead to disordered eating in patients with severe symptoms, as eating may trigger symptoms or make them even worse,” explains Robin Rose, MD, board certified specialist in gastroenterology and internal medicine and founder of Terrain Health.

“As a result, patients may start avoiding certain foods or avoid eating in general, as they do not want to exacerbate their symptoms,” she adds.

The unpredictable and unwavering symptoms have also eroded my enjoyment of food because I live in constant fear of the consequences of every mouthful. Meals that used to excite me are now terrifying, and even the healthiest nourishment can leave me curled in a ball crying.

Thanks to this vicious pain, or the anticipation of it, my disordered eating brain has flourished like it never has before.

My disordered eating began when I was a teenager during a period of high stress following a number of traumatic events, including family troubles and the development of chronic health issues.

To control the chaos in my life, I fixated on diet and exercise. Shrinking my body by undereating and overexercising was a lifeline and the only aspect in my life that I had any control over.

Over a 6-week summer vacation, I cut my daily food intake down to one meal a day and exercised for up to 5 hours a day. I would not sleep without completing at least 300 situps per day.

Every mouthful of food felt like a betrayal of my self-discipline. Every calorie that entered my body was recorded, and each workout’s calorie burn was counted as if it were the measure of my worth.

I continued to eat dinner in front of my family but lied about whether I was consuming the other two meals of the day. Secrecy around my food intake became the norm, and I fiercely denied any issues with eating.

Throughout this period, my stomach issues, which had first arisen when I was a small child and had not been diagnosed, began to rear their head again. Every meal I ate was repaid with severe stomach cramps, and I used this as motivation to limit my diet even further.

As a result, my body became accustomed to extremely unhealthy eating patterns. I even stopped getting hunger pains because my body became so used to running on empty.

Although we know that eating disorders and disordered eating behaviors affect the lives of an estimated 28.8 million Americans in their lifetimes, research remains relatively underfunded, despite the fact that anorexia nervosa has the highest mortality rate of any psychiatric condition.

Sadly, we know very little about how chronic gastrointestinal issues can interact with eating disorders. But existing research suggests that eating disorders may lead to long-term GI symptoms.

Psychotherapist Jess Griffiths, clinical lead for BEAT, a UK charity supporting those affected by eating disorders, says it’s possible for eating disorders and chronic gut issues to trigger one another.

“If someone’s got an illness, such as Crohn’s disease or ulcerative colitis or something that affects the digestive system, then you have to focus on food, possibly to cut off certain things in your diet, and obviously that’s going to mean that you have to be preoccupied with what you’re eating,” she says.

“I think that’s another way, with those kinds of vulnerabilities in place, that could set off an eating disorder,” she adds.

Gastrointestinal disorders are common in people with eating disorders. (Research shows that up to 52 percent of people with eating disorders have also been diagnosed with irritable bowel syndrome, for example.) However, there is still no research investigating how gastrointestinal disorders can trigger or re-trigger disordered eating.

Eventually, after I gained greater control over the stressors in my life, regular meals became easier to stomach. Following the hormonal nightmares of my mid-teen years, I still ate less than I should have, but I functioned more closely to normality as a young adult.

My undiagnosed stomach issues also went into remission, so I embraced denial and forged ahead with life as if nothing had ever happened, convincing myself that the disordered eating had not done any damage to my body image, psyche, or relationship with food.

But eating disorder relapses are common, with one 2005 study reporting that up to 36 percent of people with anorexia or bulimia will relapse.

As stomach issues are wont to do, mine flared back up in my early 20s. To counteract them, I went straight back to my old disordered eating habits and restricted the amount of food I was eating by half. My weight dropped. Noticing the transformation stoked an ingrained desire to improve my self-worth by shrinking my physique.

A few years later, doctors diagnosed additional conditions — ulcerative colitis and a hiatal hernia — and my GI symptoms spiraled alongside each new diagnosis. Every small stressor in my life felt like it had a direct line to my intestines. Each cruel stab of pain helped crack the shell on the disordered eating thoughts I had buried.

One intrusive thought at a time, disordered eating began to take back control of my daily life. I hid my struggles from everyone around me and continued to live on one meal a day or eat in a series of binges.

So much of my life had been taken over by pain and a broken relationship with food that I could not see a solution.

“When eating is associated with pain it can severely damage our relationship with food,” says Alexander Lapa, a psychiatrist at Ocean Recovery Centre. “Eating food will therefore be viewed as a traumatic experience and be avoided.”

I stifled my disordered eating for several more years, but when I moved in with an ex-partner at age 25, it became trickier to hide. They knew about my stomach issues, so I would use that as an excuse not to eat regular meals.

During the day, when they worked in an office and I worked from home, I would cook lunch and then dump it in the trash, hiding it under other garbage to ensure they never found out how little I was eating.

I constantly fluctuated between bingeing and starvation. Every time I endured another stomach health flare-up, my disordered eating would get worse.

Thoughts of “I don’t deserve to eat” plagued my daily life, and food tasted like ash.

I felt lost in a haze of hunger pains, stomach cramps, intrusive thoughts, punishing restrictions, a deeply embedded need to shrink myself to achieve self-love, and a desperate wish for a normal digestive system.

“When you have a chronic health issue or you feel like your body’s let you down, it actually can mean you end up really disliking yourself for not being normal, for your body not doing what you wanted to do,” Griffiths explains.

After several hospital trips, including an ambulance ride to the emergency department, I was at my breaking point, but I kept burying the reality in denial. Then my relationship broke down.

The stress caused additional pain, and my food intake shrunk with each passing day. I survived on binges of sweets and ate only one meal a day for months.

Every stomach flare was met with a tidal wave of intrusive thoughts convincing me that I was not worth the food I put in my mouth.

When the pandemic hit, as was the case for so many others, my disordered eating went into overdrive, and the stomach pain I lived with on a daily basis only fueled it.

The combined stress of worsening stomach health and disordered eating behaviors fed off each other. Whenever one eased, the other would flare and the notion of eating would become incapacitating.

Healing this relationship is an ongoing process. It started by finally acknowledging that there was an issue and recognizing that my relationship with food and body image had been broken for a long time.

Firstly, I sought help from my therapist, who helped me admit that I had issues with disordered eating and allowed me to use the term for the first time.

Learning more about my stomach’s sensitivities was a crucial step. However, it’s difficult to identify which foods are the biggest culprits, because my stomach is unpredictable.

“Nutrition is typically the last thing that we look at with disordered eating, depending on the severity and type,” says registered dietitian Lauren Sharpe.

“Generally speaking, we need to first address the thoughts and stories that are ingrained in your thought processes surrounding food and your body,” she says. “Ultimately, you will not be able to properly fuel your body until you have addressed the rules that you have around food.”

I wish there was a simple five-step program to heal my complicated relationship with food and body image, as well as my chronic health issues, but I do see light at the end of this gut-wrenching tunnel.

I no longer dread every single bite, and I am learning to love my favorite meals again, even if I do sometimes have to pay in toilet time for their consumption.

The gutting feeling of taking a bite of an amazing meal and immediately feeling pain is unlikely to fade away, but my immediate reaction is no longer intertwined with my disordered eating brain.

Not being able to eat does not mean that I do not deserve to do so.

This battle with food may be my personal Everest, but my body’s dysfunction will not forge a lifelong alliance with my disordered eating brain.

One day I will sever their connection forever.


Hannah Shewan Stevens is a freelance journalist, speaker, press officer, and newly qualified sex educator. She typically writes about health, disability, sex, and relationships. After working for press agencies and producing digital video content, she’s now focused on feature writing and on webinars. Currently, she’s working on a comprehensive style guide for reporting on disability and has a corresponding webinar available.