Why Body Image Can Be a Touchy Subject for Crohn's Disease Patients

Body image, weight, and appearance in general can be a touchy subject in Crohn’s disease and ulcerative colitis patients. When most people think about weight loss, it is in a positive light. For those with inflammatory bowel disease (IBD), weight loss is an unfortunate complication of the disease that causes much distress. Children often experience growth delays. Woman may lose their periods and the ability to conceive until their bodies are healthy enough to carry a child.

Fear of Food, Malabsorption, Severe Diarrhea

Weight loss in Crohn’s disease and ulcerative colitis is generally a combination of a fear of food, malabsorption, and chronic diarrhea. When foods make a person feel sick, he or she may lose the pleasure from food and therefore eat less. Some are hungry but afraid to eat, and others completely lose their appetites. Many fear eating at restaurants and on dates to avoid spending the rest of the night in the bathroom. Others have had multiple surgeries, resulting in short bowel syndrome, which makes it harder to absorb nutrients from foods, as there is reduced intestinal surface area for absorption.

Traveling can be especially hard with long car and plane rides, so some IBD patients will avoid eating to prevent urgent bathroom trips. Others hold off eating until the work day is over to avoid bathroom interruptions. It is not a healthy way of life, but unpredictable urgency and the potential for accidents is a real concern. Thankfully, modern medicine in combination with healing diets such as the specific carbohydrate diet (SCD) and autoimmune protocol (AIP) allow many patients to reach remission, enjoy food again, and travel with more confidence.

My Experience

I remember going on a Caribbean cruise the winter of my senior year of college. My family and I had planned this trip for months. It was our first cruise and first family vacation in years. What we did not plan was me coming down with the worst flare of my life that ultimately led to my diagnosis of Crohn’s disease, plus pneumonia that took two rounds of antibiotics to treat. I had lost nearly 15 percent of my body weight in three months, and the nurse practitioner that worked with my gastroenterologist started discussing alternate forms of nutrition to prevent further weight loss.

None of my clothes fit. I lost so much of my muscle. I had lived in leggings all winter and did not realize the extent of my weight loss until I put my bathing suit on and tried on my shorts. My clothes were falling off of me. My bones showed through my skin. I was freezing in the Caribbean. So, I hid my body in oversized dresses and baggy t-shirts.

I was vacationing on some of the most beautiful islands in the Caribbean, but I felt disgusting. Strangers commented on how “thin and beautiful” I was, but I did not feel that way. I was always in the bathroom, had a never ending stomach ache, crazy nausea, and was constantly coughing up cups of junk daily from the pneumonia.

I finally realized the toll that the three month Crohn’s flare had taken on my body, stealing my curves, muscles, and confidence, leaving a frail remnant of the strong, ambitious exercise enthusiast who was months away from graduating college and beginning medical school.

The Dreaded Prednisone

While weight loss is a major complication of Crohn’s flare, weight gain can be just as common. Many Crohn’s and colitis patients take high doses of prednisone during acute flares. Some patients flare every time they attempt to taper the prednisone, so they are stuck on the drug for months to years. The side effects of prednisone include increased appetite, weight gain, and fat redistribution. Some report weight gain with biologic medications as well.

Some IBD warriors come out of a flare sick and underweight. Once they start prednisone and a maintenance medication, they may gain a significant amount of healthy weight. The sudden weight fluctuations can distort one’s body image, especially when clothing sizes change significantly. In addition to the increased appetite, weight gain, and fat redistribution, prednisone can also cause acne, mood swings, and moon face along with an exhaustive list of other conditions. The moon face can take months to disappear after stopping the drug, and it may cause much distress to the patient.

The Physician’s Role

Some gastroenterologists (GIs) are hyper-focused on weight. They may assume a patient is doing well if the patient gains a few pounds and flaring if the patient loses weight. Some GIs only take a flare seriously if the patient is actively losing weight. This can be distressing to the patient as weight is only a small portion of the toll IBD takes on the body. Some patients also experience significant delays in diagnosis if they are overweight or if they do not experience the classic IBD symptoms of weight loss. I understand that weight can be an important indicator of disease activity, but GIs should be careful of how they approach the weight conversation with patients, especially if the patient is vulnerable and struggling with body image.

Inability to Gain Weight

Malabsorption, small intestinal bacterial overgrowth, and chronic diarrhea prevent weight gain in many IBD patients.  Being underweight can be just as distressing as being overweight, especially in adolescents.

“I wish I could eat anything I want and not gain weight.”

So many people have said this to me and not realized what they were saying. After my first bad Crohn’s flare, I gained some of the weight back, but not a lot of weight – no matter how much I ate. I have been about the same weight since I was 14. I’m 24. My body has definitely changed, but my weight not so much. If I eat too much, I will bloat and likely experience all the classic Crohn’s symptoms, but I will not gain weight. This is a problem many claim they would love to have, but definitely would revoke that request if they actually experienced the pain and unpredictability of Crohn’s disease.

Restrictive Diets

Many Crohn’s and colitis patients follow special diets to help manage their disease. Some cut out known triggers, while others follow various healing diets such as AIP, SCD, and plant-based diets. There is a fine line between following an elimination diet and following an unhealthy, extremely restrictive diet, and we have to be sure our diets are nutritionally adequate. In my experience, there are two main outcomes of elimination style restrictive diets: one either feels much better and is able to tolerate more foods after doing an elimination diet or one feels too restricted, becomes unhappy, and does not continue with the diet.

We also have to keep in mind that healing is slow and in those with severe inflammation, most foods will be bothersome, including “safe,” healing foods. In this case, it is important to treat the disease.

During my first year with Crohn’s disease, I began hating food. Why would I enjoy eating when it caused so much pain? I ate because I had to, not because I enjoyed it. Thankfully, now I am on the right path, eating mostly AIP/SCD compliant foods that I know agree with my body. To me, these diets do not feel restrictive, as finding these safe foods have brought back the joys of eating and increased the number of foods I can tolerate. I also allow myself to indulge occasionally, although I try to always stay gluten-free. The occasional indulgences help me to not feel restricted, although I can understand how some may feel restricted on a strict diet.

Here are 10 ways that helped me improve my body image affected by Crohn’s:

1. Write 10 things you love about your body.

2. Express gratitude for what your body can do, not what it cannot.

3. Shop for flattering clothes when your weight fluctuates.

4. Play around with makeup to cover up acne and facial puffiness.

5. Exercise as much as you can tolerate.

6. Nourish your body with the healthiest foods.

7. Talk with others fighting similar battles.

8. Be honest with your loved ones when you are struggling.

9. Talk to a therapist.

10. Express your concerns with your physician.

Body by Crohn’s

No matter how much my body has struggled, changed, it has fought and persevered throughout my sickest times.  Although I get frustrated with my body at times, I stay positive by focusing on what my body can do, not what it cannot. I exercise to gain strength, wear clothes that flatter my figure, and reflect on how grateful I am to have a diagnosis, a healing plan, and an incredible community of support. I have developed this newfound confidence, purpose in life, and passion all thanks to my health struggles. Discovering the right diet and lifestyle plan has empowered me to take control of my own health. I have grown to love my body by Crohn’s.

How has your disease affected your body image?