Inflammatory Bowel Disease (IBD) is an umbrella term used to describe two autoimmune conditions affecting the gastrointestinal tract – Crohn’s disease and ulcerative colitis. IBD affects at least 1.6 million people in the United States including 80,000 children1. People with IBD experience chronic inflammation of the gastrointestinal tract, leading to a variety of symptoms including diarrhea, abdominal pain, rectal bleeding, weight loss, and fatigue. Various symptoms, medications, and surgeries can change the way people with IBD view their bodies, especially adolescents.
Abby Klosterman is a registered nurse at Mayo Clinic Hospital in Rochester, Minnesota. Abby was diagnosed with ulcerative colitis when she was 10 years old and underwent colectomy surgery to remove her large intestine six months later. She was given a temporary ileostomy – a bag on the outside of her abdomen that collects stool.
We asked Abby about what it was like to live with an ostomy for seven months and how living with ulcerative colitis has changed her body image.
Q: Tell us about your experience with an ostomy.
A: When I had my ostomy, I remember feeling embarrassed to go to school and did not want my peers to make fun of me. I wore basketball shorts and large shirts to hide my ostomy bag. I decided to talk with my school nurse who helped me talk about my ostomy and IBD in front of the class. Doing this helped me tell my peers about my ostomy in a way that was comfortable for me.
Q: How has ulcerative colitis affected your body image?
A: Throughout my journey with ulcerative colitis, I have struggled with weight changes. People would comment positively when I was thin due to a flare which was damaging to my developing body image. I am now in therapy and feel grateful for my healthy body that lets me work and live a fulfilling life.
Q: How do you handle body changes?
A: For a long time, it was difficult to cope with body changes. In addition to the ostomy bag, I had a moon face* due to steroids which was devastating at school. I still struggle with stretch marks from constant fluctuations in weight. When I was a kid, my parents reminded me that the moon face and ostomy were temporary and to focus on my inner-beauty. These experiences taught me to love myself and also helped me to find my real friends.
*Moon face refers to a symptom where the face develops a rounded appearance due to a specific medication called prednisone.
Q: What is your definition of beauty?
A: Every person is beautiful in their own way. I have come to realize that we all have differences in how we look and the ways we live. Being a caring, compassionate, good person is what makes you beautiful.
Q: What resources helped you to develop a healthy body image?
A: Developing a sense of community has been instrumental in my IBD journey. Resources such as Camp Oasis, Phoenix Children’s Hospital Support Group, and social media pages such as Girls with Guts have helped me surround myself with positive people who understand what it’s like to live with IBD.
Q: What advice would you give to young people struggling to maintain a positive body image with IBD?
A: Everybody deals with body image issues, not just people with IBD. It is normal for bodies to change. If you have scars or an ostomy and someone isn’t OK with that, it is their problem to own. If someone truly cares about you they will look past the scars and see them as a part of you. If they don’t, move on! You have the power to decide how much or little you want to share about your IBD journey. It is also important to listen to your body. It’s okay to take time to yourself when your body is telling you to rest. It’s okay to say no to plans. Do not feel guilty for respecting your body or compare yourself to what other people are doing.
Q: Do you have any final thoughts?
A: Living with IBD does not define you or limit you from doing what you want with your life. Surround yourself with friends who support you and remind yourself that you are beautiful at every stage in your IBD journey.
If you are struggling with body image, it can help to focus on what your body is capable of. When you look in the mirror, think of something you love about yourself. You can even write a reminder of some of those things on your mirror. When talking with peers, it can be helpful to think of responses ahead of time to help you navigate difficult conversations. It is also okay to set boundaries and ask people not to comment on your body if that’s what you prefer. Talking with a therapist can help you learn tools to navigate social situations and help you see your body in a positive light.
Overall, give yourself patience and grace. A healthy body image does not develop overnight and it is a struggle for many, even for those without IBD. Body image challenges are normal and are not your fault. Remember that every change your body endures is proof that you are strong, brave, and resilient at every stage of your IBD journey.
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References
- 1Kappelman MD, Moore KR, Allen JK, Cook SF. Recent trends in the prevalence of Crohn’s disease and ulcerative colitis in a commercially insured US population. Dig Dis Sci (2013) 58:519-525
- 2Sachar DB. The problem of post-operative recurrence of Crohn’s disease. Med Clin North Am. 1990;74:183-188