IBD Messed with My Body Image

I’ve found my way back to a healthy relationship with my body. Here’s how.

It’s safe to say that body image affects many of us, especially young women, at some point in our lives. For those of us with inflammatory bowel disease (IBD), including Crohn’s disease and ulcerative colitis, we may experience fluctuating body image issues during times of flare and remission.

This can include body image dissatisfaction — a distorted, negative view that can make us feel uncomfortable and anxious about our bodies.

It’s unclear from the current literature whether those of us with IBD have body image dissatisfaction more than those without IBD. We do know, however, that at least three studies have attempted to determine how common negative body image is in people with IBD, and the numbers varied widely — from 21% to 87%. Some studies also found an association between worsening body image dissatisfaction and poorer quality of life.

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My changing appearance

I like to think I have pretty solid mental health, but I have certainly had body image issues over the years, often related to my Crohn’s disease. During my senior year of college, I had a significant flare that led to my diagnosis of Crohn’s disease. I started out at a healthy weight and then lost close to 20 pounds, nearly making me underweight.

During this time, my gastrointestinal symptoms were intense, making it difficult to eat. My joints ached so badly that my only exercise was walking to class. Night sweats woke me up several times per night. My body was in a horrible state of inflammation, and I could not keep weight on.

During this flare, my family and I went on a cruise. It was winter, so I had been wearing mostly loose sweaters and leggings. None of my summer clothes fit. All my shorts were so big, they would not stay on. My tank tops looked horrible. I felt disgusting, not fitting into any of my clothes, not even my “skinny” clothes. My hip bones protruded, and I did not feel like myself.

Shortly after this vacation, I was officially diagnosed with Crohn’s disease and placed on a steroid. Once I started the steroid and started slowly exercising again, I stopped losing weight, but I had lost so much muscle. At one point, when I came home from class, one of my housemates commented on how nice and thin my calves looked. She did not mean anything negative by this comment, but I cried. I knew that was another sign of all the muscle I had lost.

These calves, which had previously carried me through a half-marathon and so many HIIT workouts, now looked so thin and weak. I so badly wanted to be strong again, not skinny, and not have to deal with Crohn’s disease anymore.

I stayed on the steroid for the first 6 months after my diagnosis, which helped improve my symptoms. However, all this time on a steroid gave me a bit of “moon face.” Steroids change fat distribution in the body, which made my face swell up. I was happy that I felt better, but I hated how puffy my cheeks looked. It was not the most dramatic moon face I had ever seen, but it was noticeable to me. It took several months off the steroids for my face to resume its usual appearance.

Weighty issues

Thankfully, I have been on many Crohn’s medications that have helped me over the years. I have achieved remission on multiple occasions, and am back to a healthy weight. I am so thankful that I feel well for the most part now and can tolerate most foods. However, I have never been as thin as I was during my initial bad flare. Sometimes, I look back to those cruise pictures and think damn, I looked so good in that bikini. Then I remind myself how sick I was. I was not enjoying life. I ate to survive, not for pleasure. I felt gross every time I put on my baggy clothes that once fit.

Additionally, my gastroenterologist at the time was very weight-conscious. For the first 2 years after my diagnosis, until he got me into a good remission, he would see me every month or 2. This doctor always commented on my weight in a gentle, concerned way, but it drew more attention to the topic than was necessary. He was thrilled when I was up a few pounds but always raised concern when my weight dropped.

Personally, as a physician myself now, I try to tread cautiously when discussing weight with my patients. Often, they will bring it up on their own. If I decide to bring it up, I remain very positive and ask permission to discuss weight, being mindful that we have all gone through different weight journeys; many of us have struggled with body image, and some have experienced significant eating disorders.

A healthier dialogue

Some people will make insensitive remarks like, “I want Crohn’s so I can lose weight without trying.” When you hear this, remain poised and remember your journey. It’s OK to brush off the comment and not say anything if that is your style, or you can consider educating them about why they really would not want to have Crohn’s, and that it’s a disease with way more consequences than seemingly desirable weight loss.

I’ve found the following additional strategies helpful in improving body image:

• Remember that you will likely go through periods of flares and periods of remission. The tougher times are temporary and will get better. Your body will heal and return to your normal or a new normal that you will adapt to.
• Engage in activities that support your mental health and improve your body image, including exercise, meditation, sleeping enough, and spending more time with your loved ones.
• Certain medications, such as steroids, may change the way your body looks. Stay in close contact with your healthcare professional if you notice this. Remember, steroid courses are temporary.
• Seek a counselor. Everyone should have an unbiased person to speak with freely about anything, especially their body image struggles.
• Your body will likely go through different sizes over the years. Keep a range of sizes in your closet, as space permits, as your size could change. At the same time, it is OK to get rid of your “skinny” clothes if keeping them only reminds you that you may not be that size again anytime soon.

The takeaway

In the end, so many of us with IBD will have difficulty with body image through periods of flare and remission, courses of steroids, side effects from other medications, and through our dietary options. We will have periods when we are sick, and our bodies may look different than during periods when we feel well. You cannot and should not compare your “sick” figure to your “healthy” figure.

It’s important to remember that we have a disease that affects our entire body, and that the hard times will pass. We can learn to love our body through its changes and treat it with grace.