Body and weight changes are common with ulcerative colitis (UC). About a third of people with moderate to severe UC have significant weight gain a year after diagnosis. Another 20% lose weight.
These changes can be very stressful emotionally. “People with UC can get into a lot of self-criticism around these fluctuations,” says Julie Shafer, PhD, a psychologist in Portland, Oregon, who works with patients with chronic diseases such as UC. “We’re so body-conscious already in our culture. Add that to the anxiety when you have to deal with a flare, and it becomes quite overwhelming.” It can be even harder when others notice and comment on body changes, she adds.
It’s easy to feel out of control of your body when you have UC. But here’s how to deal — and even thrive — with these changes.
Why Body Changes With UC Happen
One of the first signs that you may have UC is weight loss. The condition makes it harder for your body to digest food and absorb nutrients, so it can be difficult to get the calories you need. If you have frequent bowel movements, you may also cut back on eating to avoid trips to the restroom. Chronic diarrhea can cause weight loss, too.
But this isn’t the sort of weight loss that makes you look good. “When most people have a flare of UC, they lose weight but appear clearly malnourished: their face may be pale, and their hair may fall out,” says Alix Turoff, 35, a registered dietitian in Sea Cliff, New York, who has ulcerative colitis. “As a nutritionist, I always worry what clients think when I go through a flare, because I often don’t look healthy.”
Most people return to their previous weight when they go on medications to treat the symptoms. Unfortunately, some drugs to treat short-term UC, like steroids, can cause weight gain. “Some of that is water weight, and you’ll lose it quickly when your flare ends and you go off of the steroid,” says Turoff. “But in the meantime, it’s easy to feel incredibly self-conscious. You also often feel powerless, too.”
A few years ago, Turoff and her husband went to Barcelona while she was on prednisone to treat a flare. “I had just started to feel better, but thanks to the medication, I had gained a lot of weight,” Turoff recalls. “It was hard to look at myself in the photos. It should have been such a happy time. But part of me was just ashamed.”
How to Deal With Comments About Body and Weight Changes
Holly Fowler, 36, has lived with ulcerative colitis for about half of her life. When she has a flare, she struggles with weight loss. “When you no longer look and feel the way you’re accustomed to, it can be disorienting,” Fowler, a health coach in Austin, Texas, explains. “You literally don’t recognize your body.”
But what’s equally hard is when she has to deal with other people’s insensitive comments. “They will say, ‘you’re too thin!’ in a very judgemental way, as if this was something that could be solved if I just ate a piece of cake, or a burger,” says Fowler.
Initially, she reacted with snark. “I’d fire back, ‘ulcerative colitis is the best diet in the world. Try it sometime!’” she recalls. “Then I realized that that wasn’t fair. People are genuinely concerned. They just don’t always know how to express it.”
Today, when Fowler gets comments, she is straightforward and explains that she has ulcerative colitis and her weight is out of her control. “I take it as an opportunity to educate other people about this condition,” she says. “But if I’m having a bad day, or am very tired, or think this person just doesn’t really care, then I smile, say nothing, and move on. When you don’t engage, others back off.”
This is often the best approach, says Shafer. “You don’t owe anyone an explanation,” she stresses. She suggests that you come up with a simple script and stick to it.
One example is, “I have ulcerative colitis, a chronic condition that causes gut inflammation and weight loss. When I have a flare, my body changes in ways I can’t control. My focus is to treat my UC and feel better, not my weight. But thank you for checking in.”
Whatever you do say, Shafer suggests that you keep it short and sweet. “You should not feel like you have to engage with someone else and get into a whole back and forth if you don’t want to,” she stresses. “Oftentimes, you get pushed into a situation where you have to reassure the other person that you’re okay. It’s not your job to take care of them. Your focus should be to take care of yourself.”
How to Stay Positive About Body and Weight Changes
It’s easy to feel powerless when it comes to your body changes caused by ulcerative colitis. “It’s especially hard if you’re a young adult in your late teens or 20s, since there’s so much focus during that time on dating, as well as finding your life partner,” says Shafer. The key is to focus on the positive, she advises. Here are some things to try:
Find support. A gastrointestinal (GI)-specialized psychologist can help you learn to better manage your relationship with your body. The Rome Foundation, which is an organization geared to research in GI disorders such as ulcerative colitis, has a list of mental health professionals you can search here. Many do telehealth, too. “It’s really important that you have a therapist who has experience with chronic GI illness, and knows how to talk to you about it,” stresses Shafer.
Curate your social media. Shafer suggests following accounts that feature people who live with an inflammatory bowel disease, such as UC. Kimberly Hooks is a mom and influencer who lives with UC, while Robert Frank is a bodybuilder with UC who has almost 2 million followers on TikTok and shares stories like what it’s like to wear an ostomy bag. “Avoid influencers who look gorgeous and just post content that showcases their perfect life,” stresses Shafer. “It sets up unrealistic expectations.”
Open up slowly. When you start to date someone new, it can be hard to know when to share that you have ulcerative colitis. You don’t have to tell all at the first, second, or third date. “Go on a few dates, until you know for sure that this person is someone you want to date for a while,” advises Shafer. When you do tell them, she recommends that you initially keep the conversation brief. “Let them know that it may make you go to the bathroom more frequently, or gain or lose weight occasionally, and see how they react,” she recommends. Their first reaction can give you insights into whether this is someone you want to stick around or if you should give them the boot.
Don’t blame yourself. Whenever you hear negative self-talk in your head, it’s important to remind yourself that your weight changes aren’t your fault, stresses Turoff. “You don’t have a flare because you drank too much coffee, or consumed too much alcohol [once],” she explains. “We put so much pressure on ourselves to maintain a perfect body, but when it comes to UC, it’s out of our control.”
See a nutritionist. People with UC are more likely to avoid certain foods and restrict their diets. That’s because they think it will help them prevent flares. But this can make it harder for you to get all the nutrients you need to help you look and feel at your best, says Turoff. Your doctor may be able to recommend a registered dietitian to help you adopt healthy eating habits. You can also find one who works with people who have UC at the Crohn’s and Colitis Foundation’s website.
Take care of yourself. It’s important to practice self-care when you have a flare that leads to either weight loss or weight gain. Turoff tries to go on regular gentle walks and eat her favorite comfort foods during flares. “I don’t feel like cooking, and I can’t tolerate salads, so I order a lot of steamed chicken, broccoli, and brown rice from my local Chinese restaurant and curl up in my favorite cozy clothes,” she says. “If you make your body your priority, you’ll feel better about it, no matter its changes.”
Fowler agrees. “There have been times when I barely want to look at myself in the mirror, whether it’s because I’ve lost a lot of weight, or put on pounds during a flare,” she says. “I remind myself that it is temporary, and I repeat over and over, like a mantra, ‘this is what you need to do to get control over your ulcerative colitis, so you can be at a healthy weight.”
