PITTSBURGH, Pennsylvania – While a patient with Crohn's disease looks healthy on the outside, chronic inflammation in the intestines can be waging war on his or her insides.
Watching 22-year old Molly Shannon race uphill, it's hard to imagine there are times when she can't get out of bed.
"When I am able to work out it makes me feel like I'm beating it because I'm overcoming the pain or fatigue I might have another day."
Molly had a bout of intense stomach pain when she was seven, ulcers that were visible in the back of her throat extended throughout her gastrointestinal tract.
She had Crohn's disease.
An estimated 780,000 Americans have Crohn's. Most of them diagnosed between the ages of 15 and 35.
And unlike other inflammatory bowel diseases, Crohn's symptoms can be vague, ranging from diarrhea, to constipation and abdominal cramps.
"Many patients don't present with the disease until they have a complication. a perforation. or a stricture causing a blockage," explained Dr. Marc Schwartz, a gastroenterologist at the University of Pittsburgh Medical Center.
Molly's inflammation required two surgeries.
"My first surgery they took out five inches of my small intestine," she remembered. "Then, while they were in there, they found another five inches of stricture in my colon."
The second surgery, doctors removed another four inches.
Right now, medication controls Molly's symptoms.
Her experience with Crohn's sparked an interest in medicine, she's now a nurse, working with other gastroenterology patients.
"I'm just a big advocate about being open with everything about it."
Helping spread the word about the so called silent disease.
NEW RESEARCH: To people living with Crohn's disease, it may sound too good to be true: a vaccine that doesn't just treat their illness, but cures it. Yet Jonathan Hermon-Taylor, a fellow of the Royal College of Surgeons and a professor of surgery at King`s College, London, is cautiously optimistic about offering exactly that to patients in a few years. The retired physician and molecular scientist has devoted a great deal of his career to studying the microbiology of inflammatory bowel disease (IBD). After decades of research, he has concluded that Crohn's may be caused by a single bacterium: Mycobacterium avium subspecies paratuberculosis, or MAP, which he reported on in a review published July 2009 in the journal Gut Pathogens. The vaccine has already been through one round of clinical testing, conducted through Oxford University in the UK. That trial found the vaccine safe for healthy human volunteers.
Experts say the majority of Crohn's patients can manage the disease with medication and many do not require surgery.