For ten years, Leah Harp has lived with pain and uncertainty.
"Whenever I see things are going well, I get afraid," she said. "I don't want things to get worse. I am afraid sometimes it's not going to go so well."
She is one of hundreds of thousands who struggle to lead a normal life with a chronic, debilitating and embarrassing illness called ulcerative colitis.
"It's currently estimated that there are about 700,000 people with ulcerative colitis," said Dr. David Rubin, of the University of Chicago. "The numbers of people are rising every year and we don't know why."
Ulcerative colitis is an auto-immune disease which causes inflammation of the colon. Its symptoms include abdominal pain, cramping, and diarrhea. A treatment exists, but not a cure.
Find out more at the Crohn's and Colitis Foundation of America .
"A flare-up for me — I am completely incapacitated," Harp said. "I feel like I have the flu, but I don't have a temperature. So, I am laying in bed, and then on-and-off I will get what my doctor calls 'angry colon.' And I will feel like I have to have diarrhea every 15 minutes, but nothing happens."
'We're Talking About My Butt'
Harp was first diagnosed a decade ago. But, for years, her symptoms were out of control, until she found the right help from Rubin.
"There is a medication recently approved by the FDA that is [an] available once a day treatment for the ulcerative colitis," Rubin said. "We have learned better how to use the existing therapies to simplify their regimens, also."
Thanks to her medications, Harp's symptoms are being managed. But even so, every morning starts with six or seven trips to the bathroom. Every walk out the door must be planned around public bathrooms. Every vacation must keep in mind medical facilities.
"This is taking a lot of my mental energy," Harp said. "I resent having that much taken away from my life and my baby and my husband. I'd rather spend it on them. And I'd rather take care of them than this. That's what gets me. That's what bothers me. "
Yet, despite the emotional burden, Harp said she is adamant this disease needs to come out of the closet because many people suffer needlessly.
"I think one reason people might be hesitant about getting treatment is because it's about our colons," Harp said. "This isn't about, you know, my finger or something. We'd be more likely to go to the doctor if it's something easy to talk about, or, you know, a sexy disease — you know, I have heart problems, or something. But we're talking about my butt!"
Rubin said as people start talking about it, they find out many others have something similar or know someone who does.
"Then, it's not a disease that is left behind in the bathroom behind a closed door anymore."
The Crohn's and Colitis Foundation's Information Resource Center offers education, support and treatment options to the public through its new hotline number: 1-888-MY-GUT-PAIN.