11 Things Not To Say to Someone With Crohn's Disease or Ulcerative Colitis

Even if you think you're being helpful with your comments, people dealing with Crohn's disease or ulcerative colitis might feel otherwise.

Living with an inflammatory bowel disease (IBD), such as Crohn's disease (CD) or ulcerative colitis (UC), is a challenge.

People with these serious conditions can lose weight during a flare-up. They can also gain it all back—and then some—if they need to get symptoms under control by taking corticosteroids. Corticosteroids are used to calm down the immune system and digestive tract inflammation per the Crohn's & Colitis Foundation.

And it can be hard to find food that's fine to eat. Because the conditions differ for everyone, different people will respond differently to different foods.

For all these reasons, certain comments are better left unsaid when talking to someone with these conditions. Here's what not to say.

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You Don't Look Sick

Both CD and UC fall into the category of invisible illnesses. There is not an official medical definition for invisible illnesses; however, in general, they refer to conditions whose symptoms can't be seen from the outside, according to the Crohn's & Colitis Foundation.

"That's one of the hardest things about having colitis—people can look OK on the outside," said Leigh Stein, a fourth-grade teacher in Pittsburgh who was first diagnosed with UC at 23.

People don't realize that it may have taken that person's last ounce of effort to get showered, dressed, groomed, and out the door, said Stein's friend Gina Lynn, who also has UC.

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I Know What You're Going Through

When people with IBD tell someone else about their condition, they often get an earful about that person's digestive problems.

But it's probably better to keep details of your upset stomach, diarrhea, or irritable bowel syndrome (an unrelated condition) to yourself.

"Don't say you understand what they're going through, because unless you have it you don't know what they're going through," said Julie Novack, a senior credit underwriter for Wells Fargo in Charlotte, NC, who was diagnosed with UC at 22.

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You've Lost Weight! You Look Great!

"My biggest pet peeve is comments about my weight—anything weight-related," said Marge McDonald, who ran a council on aging and senior center in Chelmsford, Mass., and was first diagnosed with UC in 2001. "We're so focused on weight we don't notice anything else."

That might be due to the fact that when individuals with an IBD lose weight, they may not be intentionally trying to lose weight. Instead, they may be dealing with symptoms like severe diarrhea, abdominal pain accompanied by nausea, and frequent bowel movements, as noted by the Crohn's & Colitis Foundation.

McDonald also recalled that when her mother—who also has UC—lost about 50 pounds, people kept saying how great she looked. McDonald said she would think, "No, she doesn't. Her skin is hanging off her; she looks gray."

Thus, just because someone with an IBD has lost weight, that doesn't mean that they feel good about it—or about the fact that you've mentioned it.

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You're So Lucky; You Can Eat Anything and Stay Skinny

"Stop, stop, stop telling people that they are lucky to be thin," Denise Lindberg said. "I have to work to stay not malnourished."

Furthermore, those with CD or UC often can't actually eat what they want. As mentioned, weight loss is often due to flare-ups that can mean spending most of the time in the bathroom.

During a flare-up, a person may need to choose food very carefully so they don't make symptoms worse. According to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), their diet might have to consist of foods that are low in fiber, fat, or salt or free of lactose. Their healthcare provider may also give them a list of foods or drinks to avoid in their situation (like fizzy beverages).

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You've Really Put On Weight!

On the other end of the weight discussion, individuals with an IBD will also likely not want to hear others talk about any pounds that they have put on.

Prednisone—one of the most effective short-term medicines for quickly quelling a severe flare-up—has several side effects, including weight gain. Another side effect is "moon face," in which the cheeks get rounded, giving the impression that a person has put on weight even when their body is rail-thin.

Fortunately, this effect tends to go away when the person stops taking corticosteroids. Until then, the best approach to commenting on weight or looks to a person with IBD is not to comment at all.

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Is It OK for You To Eat That?

There's no one-size-fits-all diet for people with an IBD, as indicated by researchers of a January 2020 Inflammatory Bowel Diseases study. Fruits and vegetables could be no-nos for some people, while spicy foods may be just fine for others.

"Different foods affect different people differently," Stein said. "It's a trial-and-error thing, and each individual figures out what's OK and what agrees with them. Crohn's and colitis patients know what they can eat, and when someone's looking over your shoulder and commenting, that's kind of bizarre."

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Come On, Try a Bite!

By the same token, many people with UC and CD are very familiar with what foods they should avoid by necessity. John G. said he gets annoyed when people ask him why he eats the same thing every time they go out.

"Definitely listen to your body," said Kristine Fulco, a graphic designer in Brooklyn, NY, who was diagnosed with UC at 21. "Don't let everyone else bully you." Fulco added she's fared much better by figuring out what foods are OK for her to eat rather than listening to generic advice.

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You Must Have a Lot of Stress in Your Life

Many people mistakenly believe stress causes IBDs. There's absolutely no evidence that stress or tension cause CD or UC.

However, according to a January 2019 Frontiers in Pediatrics study, stress can make symptoms worse for people who have the diseases. Additionally, researchers of a Cureus study published in May 2022 noted that stress can negatively affect the progression and the outcomes for those with an IBD.

Still, stress may only be a factor in some individuals' cases of CD or UC, so it's a better idea to not assume that for all people with those conditions.

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Can You Wait Until the Next Exit?

Other than that, another question to avoid is "Why can't you just hold it?" If you're in the car with a person with UC or CD and they tell you they need to go, listen to them, Novack said.

"One of the biggest fears of probably anyone with ulcerative colitis or Crohn's is getting stuck in traffic," Novack added. Just help them find the closest bathroom, and get them there as soon as possible.

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Why Are You So Tired?

Per the Crohn's & Colitis Foundation, fatigue is a common complaint for those with an IBD. Fatigue can be caused by a number of things, such as inflammation, anemia, or poor sleep.

"People need to understand that ulcerative colitis is a serious disease," Novack explained. "If you can't go to an event or you have to stay home from work, it's not because you're slacking—it's because you really are sick."

Jill Plevinsky hated when her friends and family would try to get her to do things she's not up for by saying, "Oh, come on. You can't be that tired." Plevinsky preferred to answer them by saying, "If you lost as much blood as I do with each bowel movement, you'd be pretty wiped out too."

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You Need To Change Your Diet

Krystle Carbone said she often gets unsolicited advice on her eating habits, such as, "Maybe if you ate better you wouldn't have that problem." And, "Why are you sick all the time? Maybe you should take vitamins and supplements."

Although the food a person eats can affect their symptoms during a flare-up, there's no evidence that diet causes IBDs or brings on flare-ups. It is important, however, for people with UC and CD to eat as healthy and balanced a diet as possible—which they most likely know already.

A Quick Review

Managing an IBD like UC or CD is challenging in an of itself. Support from friends and family can go a long way. Overall, be respectful to those who have an IBD and help them the best way you can—and be careful to choose your commentary wisely.

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