What Not to Say...

Some people, including our friends and family, can't believe that Scott has a disease. Well, they (you know who you are) are wrong. I came across this article tonight from Health.com magazine. No one knows what it's like to live with a disease unless you actually live with the disease, so until you do, stop judging us.

What not to say...

By Anne Harding

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

People with these serious conditions can lose weight during a flare-up and gain it all back—and then some—if they need to take corticosteroids to get symptoms under control. And it can be hard to find food that's OK to eat, because the conditions differ for everyone.

For all these reasons, certain comments—such as those that focus on looks, weight, and diet—can be more harmful than helpful. Here's what not to say.

1. You don't look sick

"That's one of the hardest things about having colitis—people can look OK on the outside," says Leigh Stein, 35, a fourth-grade teacher in Pittsburgh who was first diagnosed with the condition 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, says Stein's friend Gina Lynn, who also has ulcerative colitis (UC).

2. I know what you're going through

When people with IBD tell someone 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," says Julie Novack, 44, a senior credit underwriter for Wells Fargo in Charlotte, N.C., who was diagnosed with UC at 22.

3. You've lost weight! You look great!

"My biggest pet peeve is comments about my weight—anything weight-related," says Marge McDonald, 46, who runs a council on aging and senior center in Chelmsford, Mass., and was first diagnosed with ulcerative colitis 10 years ago. She recalls that when her mother, who also has UC, lost about 50 pounds, people kept saying how great she looked.

 McDonald says she would think, "No, she doesn't. Her skin is hanging off her; she looks gray."

"We're so focused on weight we don't notice anything else," she says.

4. You're so lucky; you can eat anything and stay skinny

Well, not really. Weight loss is often due to flare-ups that cause severe abdominal pain and bloody diarrhea that can mean spending most of the time in the bathroom.

And during a flare-up, a person may need to choose food very carefully so they don't make symptoms worse.

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

5. You've really put on weight!

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, making for a chipmunk-like look that can give the impression that a person is heavy even when his or her 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.

6. Is it OK for you to eat that?

There's no one-size-fits-all diet for people with an inflammatory bowel disease. Fruits and vegetables may be no-nos, but some people do just fine with spicy foods.

"Different foods affect different people differently," Stein says. "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."

7. Come on, try a bite!

By the same token, many people with ulcerative colitis and Crohn's disease are by necessity very familiar with what foods they should avoid. John G. says he gets annoyed when people ask him why he eats the same thing every time they go out.

"Definitely listen to your body," says Kristine Fulco, 29, a graphic designer in Brooklyn, N.Y., who was diagnosed with ulcerative colitis at 21 and says she's fared much better by figuring out what foods are OK for her to eat rather than listening to generic advice. "Don't let everyone else bully you."

8. You must have a lot of stress in your life

Many people mistakenly believe stress causes inflammatory bowel diseases. There's absolutely no evidence that stress or tension cause Crohn's or colitis, although it can make symptoms worse for people who have the diseases.

 A rogue immune attack on the digestive tract appears to be the cause, and the result is symptoms such as abdominal pain and chronic, bloody diarrhea.

 Damage from inflammatory bowel diseases can be so severe it requires surgical removal of portions of the colon.

9. Can you wait until the next exit?

Assume the answer is no.

If you're in the car with a person with ulcerative colitis or Crohn's disease and they tell you they need to go, listen to them, Novack says.

"One of the biggest fears of probably anyone with ulcerative colitis or Crohn's is getting stuck in traffic," she says. Just help them find the closest bathroom, and get them there as soon as possible. Another question not to ask: "Why can't you just hold it?"

10. Why are you so tired?

"People need to understand that ulcerative colitis is a serious disease," says Novack. "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 hates when her friends and family try to get her to do things she's not up for by saying, "Oh, come on. You can't be that tired." She likes 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."

11. You need to change your diet

Krystle Carbone says 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 inflammatory bowel diseases or brings on flare-ups. It is important, however, for people with colitis and Crohn's to eat as healthy and balanced a diet as possible—which they most likely know already.