One of the worst aspects of life with IBD (in my opinion) are the side effects of the devil’s tic tacs aka steroids and what they do to your outward appearance. It’s a shock to the system to go from looking malnourished and thin to having a moon face and an insatiable appetite coupled with irritability, the shakes, acne, and insomnia. The weight fluctuations patients endure throughout their journey is a rollercoaster of unexpected twists and turns. Our bodies transform from being thin and sickly to healthy and in remission with weight we’re not used to. While IBD is called an “invisible” illness, our outward appearances take a hit more often than most might think. Those around us often compliment us when we’re “skinny” and stay silent when we’re a normal weight—this is detrimental because there is SO much more than meets the eye.

This week on Lights, Camera, Crohn’s we peel back the layers of complexity regarding body image and self-esteem with IBD. Hear the candid commentary and often heartbreaking reality from 27 patients and caregivers.

The steroid struggle

I always know that after 3 weeks of prednisone my face and looks change dramatically. I went from someone with aspirations to work in TV news, on camera every day, to not letting my mom take pictures of me. I started in the TV business as a producer and once I was off prednisone and well managed, I got promoted to an on-air role, talk about messing with your head. I used to dread being a morning show anchor and returning to the news desk after being out for weeks. Nobody knew I had IBD or what my health struggles were, but they could see something was up. The calls to the newsroom and the comments were mortifying. I used to chew gum all day long while on prednisone to try and curb my appetite. My former GI told me to be careful doing that because the ingredient Sorbitol can cause stomach upset and diarrhea.

Katie: “The moon face with prednisone really did a number on my body image. I was in seventh grade and the kids and teachers would ask me what happened and why my face was like that. My school nurse, after I was out for two weeks because of a flare, came up to me and said, “Glad to see you, but honey, you look like crap.” I was in middle school when this happened, so I always just associated having Crohn’s with being ugly and that has been a long and hard battle. When you’re relapsing and you lose a lot of weight, people tell you that you look great, but when you’re healthy and in remission and you’ve gained weight back, people stop commenting about how good you look.”

Katie’s awful experience as a middle schooler inspired her to go into education. She is now a high school teacher. She says half the reason she went into teaching was to make sure students who have chronic illnesses, or who were absent, had someone who could empathize with them and just try to make sure that the experience never happens to anyone.

Danielle: “Prednisone destroyed my body image. When you look in the mirror and don’t recognize yourself, it’s really an emotional experience. In so many ways, prednisone is amazing, it got me out of my flare, but it turns my face into a swollen balloon. I can’t look at pictures of myself during that time. I am always so self-conscious when I’m on prednisone and feel like everyone can see it. IBD does many things, one of which is controls how you look which is a difficult part of the disease. I just got married and am in a minor flare and I delayed starting budesonide because I didn’t want to risk any moon face.”

Ross: “For me, what’s had the biggest negative impact is the side effects of steroid use, specifically back acne. This developed the first time I took steroids for my Crohn’s six years ago and it still has never gone away. It has had such a negative impact on my body image even though it’s not something anyone would really see. It has stopped me from taking my shirt off during summer months in public, or I’m self-conscious of having my top off at the gym changing room or even around friends or anyone I was dating. It’s something that I would almost always be conscious of these last six years. Even now, when it’s not too active, the scars and pigmentation and redness would stop me from taking my shirt off or make me very self-conscious around other people. I don’t think it will ever go away. It used to get me so down when I was already struggling with flare ups, etc.”

Laura: “Long-term steroid use was the most damaging for me. I was unrecognizable to myself and to others. I never found much support for those body changes and the mental health impact from ‘roids.”

Chanel: “I have struggled much more with weight gain from steroids and other medications than I ever have with the weight loss that is oftentimes common in IBD. Many informational graphics and articles out there about IBD always mention weight loss, but never the issue with weight gain. I’ve always had an unhealthy relationship with my body image because of the constant weight fluctuations due to medication.”

The fluctuations from being thin to gaining weight

I’ll never forget back in 2012 noticing that I was getting thinner and thinner by not eating any differently or increasing my physical activity. I was a morning news anchor at the time in Springfield, IL and I remember weighing myself each morning and seeing 1-2 pounds drop off each day…for weeks. At the time I wasn’t very well informed about IBD and didn’t realize that was a sign I was flaring. I was in my late twenties and gearing up for a trip to the Dominican for a childhood friend’s wedding. To be honest, I was happy, and I liked how my sickly body looked.

Fast forward to 2015, I was engaged and had bowel resection surgery. I had never weighed more than 127 pounds in my life and had dropped to the teens when I was unwell. My first post-op appointment with a new GI I gained seven pounds, and I wasn’t happy about it. My GI said, “this is what happens when you’re healthy and finally absorbing nutrients.” When you’re planning a wedding, healthy weight gain hits a bit differently.

Ever since then, I’ve been in remission and I’m so grateful for that, but my weight has been something I think about now—not only because of my IBD being in check, but after having three kids. My self-confidence and how I feel about my reflection in the mirror has taken a blow as the years have gone on.

Madison: “ When I was in a severe flare in 2020 after being diagnosed, I dropped 20 pounds unintentionally. I was normally around 127 pounds and during my worst flare I was down to 107 pounds. It was absolutely horrifying. I was devastated. I remember going to American Eagle to buy shorts in a 00 size because none of my clothes fit me. I felt sick and looked sick, which made everything 10 times worse. Not being able to eat food and constantly running to the bathroom in pain led me to be malnourished. I remember being at my GI appointment when we were trying to figure out a treatment plan and my nurse said after taking my blood pressure, “Madison are you eating?” I started to cry to her and said “everything hurts me. I can’t eat.”

While Madison was growing up, she always thought being thin was attractive. After being so severely sick, she now personally affiliates being thin with being sick.

“Being on prednisone to help was both a blessing and a curse as it helped get my flare under control, but also led to unwanted weight gain in my face, which makes me super self-conscious, especially in pictures. I know that side effects are temporary, but it can really hurt someone’s self-esteem.”

Fast forward to now—three years later, Madison is on a treatment plan that works for her and she’s proud of her body. She says she looks forward to being weighed at the doctor and at infusions appointments just to see a healthy weight.

“Weight and IBD is very fluid, and I constantly remind myself to give my body grace. When you’re losing weight on top of being sick, it can be detrimental to your mental health. You look in the mirror and see someone you don’t recognize.”

Ashley: “I’ve kept three different sized sets of clothes with my ulcerative colitis. My normal size, a smaller size for when I’m extremely sick, and a larger size for when I’m on prednisone. I’ve always been super self-conscious about my body size because a lot of time it’s out of my control. I also feel self-conscious when I’m so sick and lose weight and people comment about how good I look. I’ve felt guilty because I didn’t work out to “earn” that body. Then, I’ve felt frustrated because it made me mad that to look a certain way that got me compliments, I had to be extremely sick and unhealthy. Now, I have a permanent ileostomy. I am more confident in my body than I have ever been. I think that’s mainly because I’m so healthy now and I have more control over my body and life.”

Danielle: “So many things come to mind. I was 14 when I was diagnosed, and while I was sick prior to being diagnosed, I was judged for being too thin and accused of being anorexic or bulimic. Then upon diagnosis, I gained 30 pounds in 2 weeks from prednisone. At 14 years old, I was swollen and chubby and self-conscious. Since being diagnosed, I haven’t struggled with being “too thin” again, but with weight gain from prednisone and other medications. I’ve been told far too many times that “anyone can lose weight by eating right and exercising” but it’s not that easy with a chronic condition. Some mornings, I’m so fatigued and achy, I can’t get out of bed, and it takes my energy to get ready for work. My diet is extremely limited as I had a bowel resection and I’m allergic to dairy products. So, I live off protein and carbs which are not ideal for weight loss or even maintenance.”

Amber: “I have been on Stelara and have reached remission, but the thing people don’t talk about is after being in constant flares, you have no idea how much weight you might gain because of not flaring. It is a great thing and I’m so happy to be in remission, but now I must learn how to work on the nutrition aspect of it all. To be honest, all these years of being sick, I never had to worry about weight gain. I had to worry how much weight loss affected me and most people do more posting about that. Not the up sides of remission, but also what we do now to get onto a new lifestyle change. We have to learn a whole new way of nourishing our bodies.”

Stephanie: “I have found that when I’m flaring at my worst, I lose weight from not being able to eat and my body not retaining anything that I eat. I get so many compliments about the weight loss, but it breaks my heart because I might look good to others, but I’m at my sickest.”

Jennifer: “It’s crazy to know how jarring it can be to see your weight fluctuate so much so fast. Diagnosed with UC about a year ago and went through a huge flare, lost like 35 pounds. I hated looking at my body because I was under 100 pounds as an adult woman. Fast forward to now and I’m back to my “normal” weight, but still have issues with how my body looks as weight came back. It’s softer and less toned than before. I’m sure it’ll get back to the place where I was, but what if it doesn’t? Our bodies can go through so much and I’m thankful for its resilience, but the mental toll the fluctuations can be a lot to try and manage and reflect on as we navigate this journey.”

Louise: “I’m newly diagnosed and dealing with my second flare. I worry about the impact it has on me mentally because I am happier with my body when I’m very ill, and unhappy with it when I’m on steroids and feeling better. It can’t be good for us. Negative comments (from my mother!) when my face gets chubby on steroids and compliments from people when I’m not eating and very unwell are difficult to process. I get angry when they compliment me on how well I look just because I’m skinny, because I feel like it minimizes how bad things are and how unwell I am. I also like it because I like being slimmer. It is so messed up! When I get my appetite back, I try to fight the cravings and then binge and then feel awful for it. I have never been this way pre-IBD. I was always fit and healthy and in control of my relationship with food. There’s also a weird part of me that wants to look thinner because it’s an invisible illness, I want people to see how unwell I’ve been, so they don’t think I’m lying.”

Louise said it felt good to let it all out and that she’s never said any of this. Coping with big health issues comes first, but this annoys her during quiet moments. Her sentiments ring true for so many of us.

Myisha: “I struggle with body image a lot. I’m naturally 127 pounds, but with prednisone I got to 210 pounds and no longer recognized the person I was staring at in the mirror. I cried for weeks unable to recognize myself. I still cry now and I’m down to 139. My clothes still don’t fit, and I still have clothes that are a size 12-14 because I know that prednisone is an ongoing possibility and that I might get back to that size if I have a bad flare.”

Jessie: “The constant weight fluctuations have always made me self-conscious. It messes with your head too because when you lose weight from a flare, people say “oh my gosh you’re so skinny you look great, what did you do?”…but then when you gain weight (from medications not from becoming healthier) no one comments and you’re just self-conscious about it.”

Celia: “Before I was diagnosed, I was happy with losing weight. I was 13 and hated my body. I remember I had my diagnostic colonoscopy and the day after I took a picture of my stomach, it was as flat as it’s ever been. I felt good about how I looked, but keep in mind I was barely 100 pounds and 5’5’. I felt awful and I was tired all the time. As I started Humira and was gaining weight, I missed my old (very unhealthy) body. I constantly am reminded by loved ones that this weight gain is good. I just returned to the weight I was pre-symptoms almost 4 years later and I feel good overall! I still struggle with how I look and have developed a connection between food, weight gain and loss, and pain from Crohn’s that I still need to work on, but I’m doing my best. As a 17-year-old, we all tend to struggle with how we look, and I need to remember all my body has been through and done for me.”

Kindra: “Along with IBD, I also have Primary sclerosing cholangitis (PSC), so when I flare or I’m unwell, I lose weight and I can’t do anything to keep it on. I will eat all day long and you can count my ribs and see all my chest bones sticking out. I get compliments from people who don’t know me well about how thin I am/how they wished they could eat like me, and I never quite know what to say. When I am healthy and can gain weight and I have to shop for bigger clothes, I get a complex thanks to years of the American media diet culture.”

Leah: “I feel like weight gain after a flare has been challenging. All the body yo-yo and knowing the weight coming back on is so healthy and just what your body needs, but I believe it can be tough at times.”

Kelly: “I’m scared to go below a certain weight in fears of having a flare, but on the backside, I feel unattractive for my partner and fight with self-image.”

Bloating is a bitch

Even in remission, bloating is one of my main IBD symptoms. I often tell my husband, friends, and family, “you can physically see my pain right now. Feel how hard my stomach is. I look like I’m 5 months pregnant.” The reaction is always one of shock, raised eyebrows, and a bit of sympathy. Because of this I usually wear elastic waistbands or dresses. You’ll rarely ever see me wearing pants or shorts with a button. When I used to work in corporate America, my Crohn’s was out of control, and I would repeatedly have to unbutton my pants in the board room and lean back in my chair during meetings with co-workers. It was humiliating, but I always tried to make light of it. It’s amazing how we can wake up with a flat stomach and have a distended belly that truly looks like there’s a pregnancy going on by dinner.

Courtney: “Being emaciated from poor nutrient absorption, but bloated from gas and inflammation at the same time can lead to a confusing relationship with food. I don’t think it’s quite the same psychology as an eating disorder, but when eating causes you pain, or makes you literally change your pant size pre and post meal, it can be easy to want to postpone meals if you have plans, eat little in social situations, and can create an unhealthy relationship with food. Food is not the enemy, it’s a necessity—it’s all about finding the proper treatment and lifestyle to manage your IBD.”

Courtney adds that living with an ostomy is a huge adjustment with major impacts on how you perceive your body and appearance.

“My first ostomy was such a shock to the system. It feels almost surreal to see a piece of your intestine outside your body. If you have no control over output timing, which can leave you feeling broken and helpless during bag changes. It wasn’t until my second ostomy that I was able to recognize and be grateful for the benefits it affords me. I now live a healthy, active, pain-free life and couldn’t be more grateful.”

Patti: “My everyday bloated belly is like a giant dark cloud that blankets my self-image. I really try to embrace the rest of my healthy body and be grateful that I’m able to leave the house and do some functional activities and can sometimes hide my ugly belly if I’m completely emptied out, but my typical mantra is that I look disgusting because of my belly. I know this is negative thinking and messes with my mental health, but after dealing with Crohn’s for the past 51 years, I’m not sure I can ever stop that thinking.”

Alyson: “Bloat makes a girl feel AWFUL. Add in intestinal dysmotility with Crohn’s and I literally start the week at a size 8 and end in a size 10. Then we just switch to those wide leg pants with the elastic. Prior to my diagnosis, I never had to unbutton pants before or after eating. Now, it’s the first move the second we get in the car to leave because, ouch. It really makes you feel cute.”

Alannah: “For me weight fluctuation is my biggest struggle. One week I’m slim with minimal bloating then the next I’m bigger and bloating more. My partner has always struggled with confidence with his stoma due to weight gain even though he’s perfect as he is. He will never go without a top off ever.”

Naima: “Bloating is the worst. I am getting married in three weeks and I’m so worried about being bloated or gassy or having a minor flare. It’s hard to feel pretty when you can’t control how your body is feeling. Some days I feel strong and look lean—other times I hate how I look.”

Post surgery swelling, scars, and ostomies

Sabrina: “I’ve struggled with my body image after being diagnosed and going through three surgeries in a matter of two years. Seeing myself with a bag was hard and the changes that came with post-surgery swelling, scars, and fluid buildup. Body image and my new body will always be something I struggle being comfortable with.”

Mark: “I’ve had Crohn’s for more than 37 years and in that time multiple operations. I have many scars, but they are a part of my life and badges of honor in my constant battle with this disease. My IBD has thrown everything at me including short bowel syndrome, liver failure, osteoporosis, broken vertebrae, septicemia, lymphoma, coma, hepatic encephalopathy, and the list keeps growing. When I see my scars, it reminds me to keep fighting. Crohn’s will not win or stop me from living a full life. If someone asks me about them, I don’t hide. I tell them it’s battle scars. Body image is important to me, and it reflects how strong I am, and no one can take that away. I’ve worked all my life and traveled the world. This year (one year after coming out of a coma) I’ve been on a Pole-to-Pole journey.”

Martin says body image is both how you feel and how you look to others, as well as yourself in the mirror. In his early days post-diagnosis, as a young adult starting a career, he felt anxious and angry, but looked normal.

“Post surgery and with time came the additional stress of looking and behaving differently and additional comorbidities that accompany IBD. This included dental and bone issues. I was hugely lucky to have found my lifetime soul mate before my Crohn’s became active, illness and surgery haven’t changed anything for us. I have been various shades of ill with Crohn’s all my adult life and it hasn’t helped self-love, including self-image on any level. I survived and thrived because of my family’s support and very little real-world commentary on my body from others, although I sometimes preempt this by joking about looking like Homer Simpson these days. I now face further life changing surgery and I worry about the impact of my quality of life on my family. I no longer care about how others see me.”

From a caregiver perspective

Cindy: “My daughter is so deeply at war with her body, and I know thanks to chronic illness it’s so much more complex than simple teenage-girl-in-the-age-of-Insta feelings of “I don’t like my shoulders” or “I should watch my calories” (both of which are things she thinks). It is rooted in a real fear of and discomfort with her body and what it puts her through. She has so many years to live in her body and I wish more than anything I could give her peace with it…the same relative peace and confidence I have always had with my body. I just can’t relate.”

Keyla and her teenage son have IBD: “The struggle is real. Not only do we have a condition that there is stigma about, then we have constant weight issues, scars, bruising, and so much more that leaves us with body image issues. Our bodies have been through enough and done so much for us. Let’s care for it, nourish it, nurture it, and be kind to it.”

Taking on body image one day at a time

Focus on strength and resilience. Recognize your ability to navigate through challenges and adapt to changing circumstances. Once you’ve been through the flare and recovery process once, you know what to expect. Find comfort in knowing you’ve done this before and know most of the unpleasant side effects are temporary.

Seek support. Surround yourself with a strong support system of family, friends, or support groups who understand and empathize with your experiences. Sharing your thoughts, concerns, and emotions with others who have similar experiences (hello online IBD fam!) can help you feel heard and supported. Surround yourself with people and media that promote positive body image and self-acceptance. Be selective in the content you consume, ensuring it supports a healthy perspective and challenges unrealistic beauty standards.

Educate yourself. Learn more about IBD and its impact on the body. Understanding the reasons behind changes in your body and recognizing that they are a result of the disease, not a reflection of your worth, can assist in developing a more positive body image.

Practice self-care. Engage in activities that promote self-care and boost your self-confidence. This can include hobbies, exercise, meditation, or anything that brings you joy and helps you connect with your body in a positive way. Oftentimes our fatigue can hinder what type of daily activity we feel capable of, take everything in stride and don’t overdo. Start with a 10-minute walk and build up from there. The fresh air and simple movement will do wonders.

Focus on what your body can do. Shift the focus from how your body looks to what it can do. Appreciate the functionality of your body, such as its ability to heal, fight illness, and carry you through daily activities.

Reece was diagnosed with Crohn’s disease in 2014. Since then, he’s endured countless surgeries, flares, and setbacks, but chooses to focus on the beauty his life still bestows despite the challenges.

“I’m a shell of my former self, but I am okay with it. I’m grateful for my life. I have people who love me and care for me. When I look in the mirror, I see a fighter. All of the marks and scars are just evidence of my battles. It was not easy to get here, but here I am. I will never be the person I was before Crohn’s, but my disease has taught me so much about myself and life.”

Communicate with your healthcare team. Discuss any concerns or insecurities related to body image with your healthcare team. They can provide guidance and offer resources to support you in addressing these concerns. Therapy may help you cope with these struggles and provide helpful tools for living with the uncertainties and challenges.

Remember, your worth is not defined by the physical changes caused by IBD. Surround yourself with positivity, celebrate your strengths, and prioritize self-care to foster a positive body image and improve overall well-being. Most importantly, after reading this I hope you feel seen and realize that your struggles and insecurities are not unique to you.

There’s not a magic bullet for helping us cope with these insecurities, I know it can be a daily challenge. I truly believe we are our own toughest critics. If family members or friends compliment you when you’re unintentionally thin, respond by saying it’s because your IBD is out of whack. Speak up and inform those who have no idea what’s going on in your mind, with your body, when you look in the mirror, get on a scale, or have to think about how your outfit choice could impact your physical symptoms every day…it’s a lot. You are beautiful. You are strong. You are capable. There’s no one like you in the world. Your body, no matter the size, is working overtime with IBD, please take a moment to show yourself and it, some love.