So when someone doesn’t know what IBD is all about -- that those letters stand for inflammatory bowel disease, or that it's an umbrella term for Crohn’s and ulcerative colitis -- we shouldn’t be surprised.
These diseases are complicated. They look different with every person. And they’re often uncomfortable to talk about.
Some 700,000 Americans have IBD. It’s something we should know about, something that should be discussed. Some people with the condition have shared their stories.
They have a few things they’d like you to know.
1. It’s not just a bathroom thing.
IBD affects the gastrointestinal tract.
It all has to do with ... pooping. Right?
“I actually have more symptoms outside my gut than I have symptoms that are more common to Crohn’s,” says Crystal Ware, 31, who works in marketing for the Crohn’s & Colitis Foundation of America (CCFA). “I actually have horrible arthritis pain that is tied to the Crohn’s disease."
She says she also has erythema nodosum, a skin disease in which lumps show up under the skin; Sweet’s syndrome, another rare skin condition; spondylitis, a spine and joint condition; and uveitis, an inflammation of the eye.
“There are so many other ways that my immune system has attacked my body that, even though I may not be running to the bathroom, that doesn’t mean that I’m not actually sick.”
IBD is marked by an attack on your gut when your immune system recognizes a virus or bacteria as foreign due to some trigger. The trigger could be illness, food or something in the environment.
The whole thing can cause inflammation throughout the body.
“IBD is very complex. It’s not just a bathroom disease,” says Brian Greenberg, 33, a financial services professional from Stamford, CT. “It’s a lot more. It’s the arthritis, the responses to medicine. It’s like the flu without the rest of the symptoms: Every part of the body just hurts. It’s a full-body inflammatory disease, basically.
“It can take a real toll on your body -- as well as your family and your financial situation. It can really take a toll on your entire life.”
2. It can be embarrassing at first.
Jackie Zimmerman was diagnosed with ulcerative colitis in 2009. She was in her mid-20s at the time, and she knew one person with inflammatory bowel disease.
“All that I knew, which is all a lot of people know, was that he pooped a lot,” Zimmerman says. “When I found out that was my diagnosis, I was immediately mortified. I hid this from everybody in my life. I hid it from my parents. I hid it from my friends. I was on my own on this because I was so embarrassed.”
Along with the arthritis and other things IBD can cause, people with the condition can also have:
Some people need surgery.
“It does have to do with going to the bathroom,” Greenberg says. “And at a very young age, we’re taught not to talk to anybody about what happens behind those closed doors.
“So we start to learn how to deal with these diseases on our own, even though we don’t have to, and we kind of get into a very negative place because we feel very alone.”
Greenberg had 13 surgeries in 19 months. He struggled with IBD’s stigma. But he found help in talking to others, and later started the Intense Intestines Foundation.
He also stays physically active. Last year, he completed a half-triathlon.
Since her diagnosis, Zimmerman, now 31 and living in Michigan, has had six different IBD-related surgeries, including some to build a J-pouch. That's a way of reshaping the colon to help waste leave the body. Along the line, she decided that talking about her disease was helpful to not just herself, but to others.
She runs a non-profit group called Girls With Guts. It organizes an annual retreat for women with IBD. She’s also active with the Crohn’s & Colitis Foundation of America, and she writes occasionally on a website called Blood Poop & Tears.
“No one should be doing this on their own. It’s way too hard to do on your own,” Zimmerman says. “If I had cancer of the arm, I would never be embarrassed to tell anybody that. But because my disease happens to be located in my bowel, I was mortified.”
Douglas Caballero is a producer, tech executive, and TV host in Los Angeles who is living with Crohn’s. He was diagnosed in his 20s and spent years ignoring his doctors, not talking to people about his disease, and “crossing my fingers.”
Now, he paddleboards in the Pacific, exercises regularly, and serves on the board of the CCFA chapter in L.A. He’s tried to get celebrities to help bring inflammatory bowel disease education to the masses.
“It’s a struggle to get a lot of entertainers involved, because it affects a taboo part of your body,” says Caballero, 37. “With Crohn’s, people don’t want to talk about it. It’s taboo.”
Ware says there’s a bigger picture when talking about her disease.
“I don’t talk about my Crohn’s because I want pity or I want attention,” Ware says. “Talking about this disease, I’ve lived with it for 24 years. It’s who I am. It’s part of my fabric.
“The only way that I’m going to get a cure is if enough people know about this to fuel the fire. So I have to talk about this, because if I don’t, then it’s not just me that suffers.”
Caballero speaks publicly not only to educate, but to show those with IBD that the disease doesn’t have to be strength-sapping.
“I’m a happy, energetic person who exercises a lot,” he says. “I’m sort of a living, breathing embodiment of, ‘Yeah, I am sick, but you can be a healthy, happy dude if you’re fortunate and you try, too.”
3. IBD is not IBS.
IBS is irritable bowel syndrome. It's a common problem, but it’s not an inflammatory disease, and it doesn’t cause changes in the tissues of the intestines like IBD does.
“This is not like a 2-week or 3-week battle of IBS, and then your body regulates and you go back to normal. These are chronic diseases,” Greenberg says. “A lot of us are going to have to live a major part of our lives dealing with this every single day.”
4. Don’t tell people with IBD what they should be doing.
Those who've been living with the disease for years know all about the suggestions from well-meaning but often-misinformed acquaintances.
Try this drug. Don’t eat that. Just eat this.
“Don’t push your treatments on other people. Because there’s a good chance that I’ve already tried it and it didn’t work for me,” Ware says. “Don’t judge me or don’t judge other patients. You don’t know what path they’ve taken to get there.”
5. IBD affects everyone differently.
“In my experience, the most frustrating thing about an autoimmune disorder is you don’t have a lot of control. It almost has its own personality and a mind of its own,” Caballero says. “It kind of comes and it goes when it feels like it, no matter what you do.”
Greenberg has a brother with inflammatory bowel disease. They both have tried the same drug, Remicade. His brother is taking to the medication well and has few symptoms of Crohn’s. Greenberg says the drug didn't work that way for him. He continues to struggle with severe symptoms of the disease.
“Everybody’s stomach is different,” he says.
6. Living with IBD is a roller coaster.
People with severe symptoms can have good days among the bad. They can have several good days in a row. But just because someone with the disease looks and acts fine, it doesn’t mean the next day won’t be a bad one.
“I can have a day with my Crohn’s when I’m floored and I’m in a lot of pain and hardly can get out of bed. And then the next day I’m out and about and going for a hike or going for a run or doing something,” Greenberg says. “And people are like, ‘How can you be doing that? Yesterday you were so sick.’ It’s just that’s part of the disease.
“It’s a roller coaster that you just have to ride and be ready for.”
7. There is hope.
Researchers are looking for new meds to treat IBD. It’s a constant topic for veterans of the disorder. Already they’ve seen advances that provide at least a bit of light.
“I think they can get it under control,” Caballero says. “It’s sometimes a little bit overwhelming for me. But I feel pretty confident that in my lifetime, they’ll figure out ways.”
“I think it will come along, yes,” Greenberg says. “You look at just the advancements. We’re 3D-printing body parts. All of these advances are happening at such a rapid rate. These things are going to be available to people in the very near future.
“I have a very positive outlook. If I didn’t, IBD can very quickly bring a person to the ground. And I just don’t want to cry about it.”