Medically reviewed by Jenny Blair, MD
Edited by Kristen Sturt
“I glance at myself in the mirror at the end of the aisle. My eyes immediately go to my pouch and the belt that helps support it. I keep the belt tight and it cuts deep into the fat of my belly. Skin spills down over the top of the belt, obscuring a large part of it. ‘This is what they mean by muffin-top,’ I think to myself. I pinch a mound of flesh between my fingers and sigh again. Despite all the swimming and working out that I do, I can’t seem to lose any of the fat around my midsection. I put on my shirt and remember back to when I was in college and how most days after swim practice, I would just leave the locker room shirtless. That was a lifetime ago, when I had 4 percent body fat, a six-pack and tanned skin from constant training beneath the Florida sun.”
These powerful words were shared by IBD advocate Ryan Stevens (Instagram: @rp_stevens), 45, Maumee, Ohio, who was diagnosed with Crohn’s disease at age 35. Ryan has an ostomy and a parastomal hernia that cannot be repaired due to his history of fistulizing disease.
When you live with IBD, struggling with body image and self-esteem is common and understandable. Many of us lose bowel, have bowel repaired or have bowel on the outside of our skin. We all face unique challenges and struggles.
On a personal level, when I was diagnosed with Crohn’s disease at age 21, I aspired to be a television reporter and anchor. As you can imagine, being on 60 milligrams of prednisone and dealing with an acne-covered “moon face” didn’t help with my job search. I went from loving the camera to not allowing anyone to take a photo of me. When I did land a TV job, I spent the first 10 months behind the camera. Of course, my boss never attributed me being off-camera to my looks—but deep down I knew that was why. It was amazing how I was put on camera once I was done with steroids and back to “normal.”
Coming to terms with your body post-diagnosis and throughout your patient journey takes time. I had the chance to interview several IBD patients who have endured j-pouch, ileostomy and colostomy surgeries, along with a clinical psychologist in gastroenterology who lives with Crohn’s herself. Here’s their advice for coping with body image issues.
Make Peace With the Adolescent Spotlight
“In psychology we have a term called ‘the adolescent spotlight,’ in that as adolescents, we naturally feel other people are paying much more attention to our every move and function than they actually are. This is a normal phase in life that we should grow out of, but IBD can really make it feel like that spotlight is right in our faces,” explains Tiffany Taft, PsyD, a clinical psychologist at Northwestern University Feinberg School of Medicine in Chicago, Illinois. “The easiest example is people with IBD worry if they’re out with friends and are in the bathroom too long. When I talk about this concept and explore whether other people really are judging a person with IBD, most of the time there isn’t a lot of evidence to support it. We can apply this to scars and ostomies as well.”
Marisa Troy (Instagram: @JournalingIBD), 32, Westchester County, New York, was 13 when she was diagnosed with IBD. In the beginning, it was weight fluctuations related to flare-ups and prednisone. However, when she began her surgical journey at the age of 15, things slowly started hitting her more and more.
“When I had my j-pouch, I was very aware of my enormous surgical scar on my abdomen, along with the tons of stretch marks I had because of steroids,” she says. “However, I was strangely never embarrassed by my scar. I think my mind was starting to accept the fact that I was different. I wasn’t like everyone else my age, so if I had marks on my body that showed that, well, there was nothing I could do about it.”
Her ostomy was a different story. Troy had a difficult time coming to terms with the fact that she was unable to go to the bathroom like a “normal person.”
“As a teenager, I felt like I had to hide my body,” she explains. “I was so petrified that someone would find out my ‘dirty little secret’ that my entire life became about making sure no one found out. This feeling led me to have enormous anxiety.”
When Rachel Wigell (Twitter: @salty_data_eng), 26, Boston, Massachusetts, was diagnosed with Crohn’s, she was only 14 years old. She had barely had time to form a body image that didn’t include living with this disease. Wigell finds that showing herself empathy has helped her overcome self-esteem issues.
“This body has gone through a lot! There have been times when I could barely walk, stand up or even roll over in bed,” she says. “Going through that makes the stuff that I might feel insecure about, like occasional gassiness or the mess of scars all over my belly, feel like small beans in comparison. I try to think of it all as just physical evidence of the difficulties I have braved. In this way, I am redirecting my insecurities towards something I am proud of instead—my courage and strength.”
Change Your Self-Talk
It’s important to remember we are not what happens to us. Rather, we had an identity before IBD, and we are that person experiencing IBD. Our worth is not lessened because we have scars or are dealing with embarrassing physical side effects of our medications. If you’re feeling sad or angry, think about what you are telling yourself about your body. Is it accurate? We tend to be much kinder to others than ourselves.
“Instead of fighting the emotions, accept they are part of living with IBD and they will pass,” says Dr. Taft. “Allow yourself 15 to 20 minutes of ‘worry time’ or to cry—space for whatever emotions you’re feeling. Instead of trying to change emotions, notice what it feels like and pick the best word that describes how you’re feeling. Accept the feeling as a natural reaction to living with the effects of IBD on your body. Notice how your body feels when you’re in that emotional state. Do you feel tense? What’s your facial expression? How’s your breathing? As time passes, how do your thoughts, feelings and body change? With time, it should become easier to sit with uncomfortable feelings as they arise without letting them get away from you or out of control.”
Keith Thomas (Twitter: @keiththom2014), 57, Llanelli, United Kingdom, was diagnosed with ulcerative colitis at age 46. To him, having an ileostomy just means he has a different toilet routine.
“I love who I am, and I would not change anything. Keep telling yourself that others don’t see you as you see yourself. You are you and you have to learn to love yourself.”
Look in the Mirror
Some people avoid looking at their scars. That was the case for Richard Barnes (Twitter: @richmbarnes1), 44, Nottingham, United Kingdom. He woke up from surgery to discover he had a stoma and an ileostomy.
“It made me seriously unhappy, depressed, angry and I contemplated suicide,” he says. “It really got me down. I hated the look of my body and couldn’t and didn’t accept it for many months. I don’t think I looked in a mirror for five months. It really was hard to deal with.”
If you have similar trouble, schedule time each day to look at yourself in the mirror. You can start off small, at 10 seconds. One minute. Whatever you can tolerate.
“Look at your body and pay attention to your thoughts and feelings,” explains Dr. Taft. “Don’t try to fight them off, just let them come to you. When you’re done with your mirror time, take one or two of your negative thoughts and reverse them so they’re positive. For example, ‘My stomach looks so gross with this scar’ to ‘My stomach looks pretty cool with this scar.’ You’re not going to believe it at first, but with time and practice the negative should become less intense.”
Then, each day, add a little more mirror time, until you can look at yourself without judgment. “It doesn’t have to turn into immense body positivity; neutrality is okay too,” says Dr. Taft. “Avoidance will only perpetuate the negative feelings and the tug-of-war with low self-esteem.”
Work on Acceptance
As hard as it may be, try to accept that your old self—the pre-diagnosis you—is still there underneath all your body changes. And even though you may never look like you once did, it is okay. Wigell says she’s slowly shifted from feeling like certain events, such as j-pouch failure and needing a permanent ileostomy, would be the end of the world. Now she accepts the possibilities.
“The suffering my colon put me through helps me to appreciate my j-pouch, even when it's being bratty, and the same will apply to a stoma if I need to get one someday,” she says. “It took some serious time and work to get to this place, mentally.”
Focus on What You Can Control
Troy finds it empowering to spend time on the parts of her appearance she has power over; it helps her to feel more confident and comfortable in her own skin. While she says her hair is a lot thinner since her diagnosis, she can change the style and color. She finds getting manicures makes her feel more put together and human. Troy also finds joy in picking out a wardrobe that makes her feel comfortable around her ostomy.
Don’t Be Afraid to Ask for Help
As an IBD warrior, you've already been through a lot because of your condition. It's not fair to add to your struggles with negative thoughts about your body. If you’re unable to be gentle with yourself, consider therapy. There is no shame in asking for help. Many in your situation need help coping.
Aside from in-person therapy, there are apps created to help keep you on track, including ACT (Acceptance and Commitment Therapy) Coach (created by the Department of Veterans Affairs), ACT Companion, Breethe and Stop, Breathe, & Think.
Connect With the IBD Community
Always know you are not alone in your worries or struggles. The best and most beneficial conversations you will have regarding body image and self-worth will often be with those who live with IBD and can genuinely relate. You will feel understood. You will feel validated. You will feel comforted. The “IBD family” has a heavy social media presence, especially on Instagram and Twitter. Don’t hesitate to reach out. You’ll quickly notice how easy it is to bond with a friend—in person or virtually—who shares your experiences.
Not ready to share your personal health details on social media? Create an anonymous account. Read what others are posting and reach out without disclosing your identity. Check out IBD blogs written by patient advocates who are passionate about sharing their stories and viewpoints in hopes of helping others.
Look at the Big Picture
As IBD patients, our bodies go through unthinkable trauma. The fact that we still function is something to be proud of. Remember that your worth is not measured by your reflection, your outward appearance or how you go to the bathroom. Rather, it’s about how you treat others and live your life. Allow yourself to feel. Allow yourself to mourn the physical and emotional changes IBD causes. Don’t forget to cut yourself some slack.
“When I work with patients, I often am in the role of cheerleader in that I remind them of all the stuff they’ve been through, and how maybe a lot of the time they were thinking ‘I can’t do this—it’s going to be catastrophically bad.’” says Dr. Taft. “Yet, here they are today.”