A Not So Invisible Illness: Inflammatory Bowel Disease

By Maria Mutka from NC, USA

Content Warning: Body dysmorphia, abnormal eating and exercise patters.

As a high school teenager, I thought I was doing well at hiding my illness from my friends and peers. When there were snacks or meals served at school that I knew would send me straight to the bathroom, I deftly avoided them and made excuses that I had already eaten or just wasn’t hungry. If I was experiencing extreme abdominal pain, bloating, and gas during the school day, I tried to ignore it while positioning myself as close to the door as possible, just in case.

For most of high school, I experienced a constant flare that fluctuated between mild and moderate symptoms. This made hiding the tangible symptoms of my ulcerative colitis somewhat possible in my mind, although my friends and peers undoubtedly knew I was experiencing gastrointestinal health issues. I had briefly mentioned to them before that I had inflammatory bowel disease (IBD), but avoided elaborating on what that meant out of embarrassment and fear that it would make them uncomfortable.

I soon realized that there was one facet of my illness I could not hide from my classmates: while being a sophomore in high school, I was 5’2” and barely 80 lbs., with the face and the body of an 11- or 12-year-old. This visible manifestation of my illness through delayed puberty caused me to experience a lot of insecurity, which in turn led to becoming obsessed with food intake and exercise. I was constantly trying to find the perfect balance between food and exercise that could overcome the deleterious impacts of my ulcerative colitis on the absorption of nutrients critical to my growth.

Perhaps the reality of my underdeveloped body so heavily impacted me because of my journey with ulcerative colitis since the age of 6. I had gotten used to the other physical manifestations of the disease: frequent bowel movements, diarrhea, blood, pain, and extreme fatigue, but this limbo stage of early pubescence was new to me. It was extremely damaging to my adolescent attempts at processing and accepting my body for what it was, and at developing anything resembling a positive body image.

At the time, it felt as though with my IBD symptoms continuing, the very least my body could offer me was a sense of somatic belonging and self-worth that I felt could only come from looking like my peers. I was determined that looking my age would help me finally feel like I had access to the same sort of normal teenage experiences they did. Maybe once I looked like everyone else, I would feel more confident in making new friends, being involved in athletics, straying outside the comfort of a singular, perfectionistic focus on academic success by making mistakes, and dating.

For so long, I let my physical appearance dominate my social interactions and extracurricular activities because I felt like an imposter in my own body, completely estranged from what I thought it meant to be a teenager like my peers. In my mind, I was only able to watch from the sidelines as high school, along with the seminal memories and lessons that accompany adolescence, unfolded for everyone else.

Part of the issue was that I was not simply imagining my peers’ perceptions of my physical appearance. Under the guise of concern, while trying on costumes for high school theater productions, several of my peers would tell me that I needed to eat more, bluntly stating that I looked like a twig. In those moments, I could not have felt more infantilized or more childlike not only in appearance but in how my peers treated me.

It was not only my peers who infantilized me. Eventually, I was referred to an endocrinologist for my stalled growth. While I had looked forward to identifying possible solutions to my inability to gain weight and progress further in puberty, all I received from my doctor were vague assurances I would eventually grow and that my endocrine system was in working order. These small efforts at placating the concerns that were wreaking havoc on my mental and social quality of life while well-meaning, were harmful. They reinforced my ever-growing anxiety that my situation would never change and that my mental health and social quality of life did not matter.

My experience with US health care systems’ large deficits in addressing chronically ill youths’ psychosocial needs and quality of life is, unfortunately, not at all unique. Whether these needs are avoided intentionally through health systems causing direct medical trauma, or through omission in failing to address social determinants of health (e.g., housing needs or food needs), the harm done is impactful and lasting. If providers had screened for or discussed my mental health and psychosocial needs related to my IBD at any point, I would have jumped at the chance to talk about it. However, my physical symptoms were the only topic of discussion and implied to be the only issue that could even concern me.

I know now that delayed puberty is not an uncommon comorbidity of pediatric inflammatory bowel disease, as many studies on the subject have shown. Despite my at-the-time unassuageable fears, I did eventually grow and complete puberty, although I do still receive comments that I look young for my age.

Looking back at my adolescence, when I felt like I was perpetually stuck in a Groundhog Day scenario due to my delayed puberty, in hindsight, I can appreciate all my body did for me. I was able to make it through a multi-year-long flare, and all things considered, my body managed it pretty well. Looking back, I try to have compassion for my perfectionistic teenage self who was determined to look like her peers to an unhealthy extreme. What she needed was a pat on the head or vague assurances everything would turn out okay. She did not even need hormone therapy, medication, or any sort of quick fix to help her start puberty earlier. It was in many ways a lot simpler than that: she needed providers and a broader health care system that could recognize her need for mental health support and do something about it.

Featured photo by mododeolhar from Pexels.

00-12 in 12 Months

This article is sponsored by Gali Health.

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By Samantha Rzany

Ulcerative colitis is described as, “a chronic, inflammatory bowel disease that causes inflammation in the digestive tract”. And while most of the symptoms associated with IBD take place in the gut, some of the hardest and often most shameful ones take place elsewhere in the body. While most people know about my struggles with IBD, very few know about the subsequent issues that accompany my disease.

I’m someone who was always fairly thin and had a pretty fast metabolism. I never really struggled with my views on my body and was always pretty comfortable with my weight. I had seen numerous friends struggle with eating disorders, and while I could sympathize with them, I never really understood how someone could just stop eating. But when I started getting sick, I quickly grew to learn all of the emotions and struggles associated with eating disorders. 

I was diagnosed with ulcerative colitis on December 10, 2018, but my symptoms began long before then. Beginning around September of 2017, I began having severe stomach pains and found myself sick after nearly everything I ate. I started to try to adjust what I was eating in an attempt to see what it was that was causing such extreme pains. I saw numerous doctors who told me I was just stressed or that I had IBS and just needed to learn better management of my stress and emotions. I went to my first GI, who ran multiple tests that all came back negative. We started restricting types of foods like gluten and dairy to see if they were causing my symptoms. 

Because of the pain I was in and the limited foods I could eat, I was dropping weight pretty rapidly. I started hearing how “good” and “thin” and “healthy” I looked. People asked if I had started working out or what diet I was on. I was at my sickest, but to everyone else, I apparently looked my best. While test after test continued to come back negative and I continued to feel sicker and sicker, my weight also continued to drop. I found a sense of control in being able to choose whether or not to eat each day. People’s comments about how “good” I looked started to get to my head. I began to restrict my eating far beyond what was medically necessary to control my symptoms. 

I soon found myself to be the weight that I was when I was 13 and in 7th grade. I was shopping in the children’s section of stores and buying XS and 00 sizes in women’s. People told me I must be incredibly fit and in shape because they could see my abs, but in reality I was just so thin, that there wasn’t anything else there.

I continued getting tested for different illnesses and diseases, and the results kept coming back negative. I was angry, I was in pain, and I needed to control something in my life when everything else seemed so uncontrollable. By April of 2018, I was sickly thin. I finally admitted to myself that I needed help. I sought out a therapist that specialized in eating disorders. I worked extensively with her throughout the course of the summer. When school started back up in the fall of 2018, I was back to my normal weight and mentally doing much better. I had found a good medication that helped with my anxiety and depression and felt much more like myself. 

While my mental health was in a much better place, my physical health was still struggling. Around November, it began to plummet and, what I know now to be my IBD symptoms, got much worse. In December, I called my GI explaining my worsening symptoms and we scheduled a colonoscopy for the next week. 

The next few months after my diagnosis, I continued to get sicker. I was very limited in what I could eat, but I continued working with my therapist and we made sure I wasn’t restricting myself beyond what I needed to do for my IBD. Fast forward to March of 2019 when I was in and out of the ER multiple times a month. I was put on Prednisone for what I was told was going to be “just a couple weeks”. The prescribing doctor warned me of possible weight gain, but said that since I would only be on it for a few weeks, the 5 pounds would fall right back off. 

He was wrong. 

I was on Prednisone from March until August of 2019. And in the first two months on the medication, I gained 47 pounds. As someone recovering from an eating disorder, this was indescribably difficult for me. I found myself needing to shop in stores I had never been in before. I was wearing sizes I had been able to practically swim in just a short year ago. I went from roughly a size 2 or 4 to a size 12 in just a couple months. I had stretch marks. I had cellulite. And I was much heavier than I had ever been in my entire life. 

Over the course of the summer, I struggled hard. I found myself wanting to restrict what I ate in an attempt to lose some of the weight I was gaining from the medication. But I remained strong. I reminded myself of how much I had overcome in the past year. I reminded myself that the weight gain due to the medication was far beyond anything I could control and that restricting what I was eating wouldn’t help. I reminded myself that I was still the same strong and resilient person whether I was a size 00 or a size 12. 

When I was finally able to get off of the Prednisone and my IBD was in remission, I decided to get a tattoo to be a constant reminder of my strength. In a time when I could have so easily gone back to old habits and had every reason to feel self-conscious, I remained strong and held to the mindset I had worked so hard to get. I got a tattoo of the National Eating Disorder Awareness logo on the back of my arm as a reminder to me of how much I went through and overcame in just one short year. 

Nine months later, I have still not lost all the weight that I gained on Prednisone. It is still hard for me to look back at pictures of my normal and healthy self and wish I could look like that again. I have a bin stored away of the larger clothing I had to buy while on Prednisone in case I have to go on it again. It’s easy to look back at my life before my diagnosis and before I started getting sick and wish to go back to that time of my life. But when I look at everything I have gone through since then and everything I have worked so hard to overcome, I can’t help but be proud of the progress I have made.

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This article is sponsored by Gali Health.

Gali Health is an AI-based personal health assistant app helping people with inflammatory bowel diseases (IBD) proactively manage their condition. Gali gathers knowledge from daily interactions and health monitors to tailor support and information to your specific IBD experience.