Remember a time when your stomach was so upset you couldn't leave the bathroom?
Now, imagine if diarrhea and abdominal pain were part of your everyday life and could strike at any moment.
Image if you lived in constant fear of needing to be near a bathroom.
Imagine if wondering what food would be served at every social event you attended caused you anxiety.
Imagine if you had to map out every bathroom at every single place you went.
This is the reality for many of the 1.6 million people in the United States living with inflammatory bowel disease (IBD).
Now, a campaign complete with a superhero has been launched to raise public awareness of the plight, and the courage of people with the disease.
Discomfort and embarrassment
There are two common types of IBD: Crohn's disease and ulcerative colitis.
These chronic conditions are marked by inflammation in the lining of the gastrointestinal tract. Ulcerative colitis impacts the colon and the rectum, while Crohn’s disease can impact any part of the digestive tract.
"I used to be in the bathroom all the time, and at work my boss would ask why. It's embarrassing to tell people about your condition. I had to cancel so many dinners and outings with my friends because I didn't know if a bathroom was going to be around," Sarah Machemer told Healthline.
Machemer was diagnosed with Crohn’s disease in 2002.
"It was rough. I was in and out of the hospital from 2003 to 2008. I started failing my meds and had to have surgery," she said. "I would think, 'Who's going to love me, and how am I going to tell my friends about this?'"
Because people with IBD can experience flares along with periods of remission, their daily life is affected.
"The impact on lifestyle can be immense if [patients] are flaring," Dr. Raymond Cross, professor of medicine and director of the inflammatory bowel disease program at the University of Maryland School of Medicine, and co-director of the Digestive Health Center at the University of Maryland Medical Center, told Healthline. "They can be housebound or bathroom-bound. For more functional patients, it might affect things like driving to work, delaying social engagements and sexual engagements."
However, Cross says, it's realistic for those with IBD to live functional lives given advancements in medications and understanding of the condition.
Machemer can attest.
Today, she works as a personal trainer and leads an active lifestyle practicing yoga, meditating, working out, and traveling. She credits strong support from her doctor, family, and friends in her management of Crohn’s disease.
To spread a message of hope and awareness for those with IBD, Machemer took part in helping to create Samarium, a superhero with IBD.
Samarium is the face of "IBD Unmasked.”
It’s a global awareness campaign developed by Takeda Pharmaceuticals in partnership with the Crohn’s & Colitis Foundation of America (CCFA).
Marvel Custom Solutions teamed up with Takeda and the CCFA to create Samarium.
The initiative’s goal is to empower those with IBD to take on their disease with strength and resilience.
It also provides supporting and engaging resources for those with IBD and their loved ones.
"This campaign is encouraging people to ask questions and develop a better dialogue with their healthcare team so they can achieve remission and be healthy. It's not saying that despite these conditions, people should just suck it up and be a superhero," Dr. David Rubin, professor of medicine and chief of the Section of Gastroenterology, Hepatology, and Nutrition at the University of Chicago, told Healthline.
Rubin, who helped develop the campaign, adds that the goal is to encourage IBD patients to find a good team of doctors and nurses who will listen to them, and help get the disease under control.
"We want to empower patients to know they should expect more from their doctors in helping them to live healthy lives," said Rubin.
The campaign website, www.IBDunmasked.com, includes a graphic novel story featuring the IBD superhero. Takeda will donate $1 for every view to the CCFA, up to $25,000.
The website also includes interactive activities, like quizzes. There are also educational materials that relate to managing IBD, and conversation guides for people living with IBD and those who care about them.
Countries in Europe, Asia, and South America will also launch "IBD Unmasked" during the year.
Not all those living with IBD believe "IBD Unmasked" tells the whole story.
"I admire the people who are able to have a normal life, do yoga, have a career, work out, travel, and such. Those are your true superheroes. But that's just not me. I think just getting the IBD name out there is great, but getting real information about what it's like living with IBD is better," Jenni Schaeffer, who blogs about living with Crohn’s disease, told Healthline.
Schaeffer says it's misleading to inform people that living a normal life with IBD is easy.
"[People] think you poop a lot and that's it. It's so much more complicated than that. Because of my problems with Crohn's disease and all the extra things that go along with it — insomnia, depression, anxiety, pain, chronic diarrhea — I had to stop working. We lost our home because I couldn't work. I can't do things with my husband or my child that I would love to do because I can't be away from a toilet,” she said. "Crohn's disease has made me a fighter. It has made me a warrior, and I fight every day, but not because I am strong or special. It's only this way because I have no other choice."
While Rubin says Schaeffer's struggles are real, he suggests thinking of the campaign in this regard:
"Any superhero story has a back story, and all superheroes have weaknesses. To understand a superhero in any narrative is to know that they have weakness, and they have deep personal stories that have led to their situation and given them the motivation and drive to be the moral characters they are in these stories," Rubin said. "Part of what this campaign is doing is trying to raise awareness that while you may live with a chronic condition like Crohn's or ulcerative colitis, you're not defined by it, and it can be part of your narrative."