Molly’s battle with Crohn’s, the silent disease

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It’s been called a silent disease, affecting the digestive tract, and it’s often diagnosed when people are young.

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, and many patients are too embarrassed to talk openly about it.

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 said.

Molly had a bout of intense stomach pain when she was 7. 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 are 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," Dr. Marc Schwartz said. "A perforation, or a stricture causing a blockage.”

Molly‘s inflammation required two surgeries.

“My first surgery, they took out 5 inches of my small intestine," she said. "Then, while they were in there, they found another 5 inches of stricture in my colon.”

The second surgery, doctors removed another 4 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,” Molly said.

She's helping spread the word about the so-called silent disease.

Experts say the majority of Crohn’s patients can manage the disease with medication and many do not require surgery.

They’re still not sure what causes the condition but say genetics and a trigger like a viral infection may play a role.

REPORT: MB #4500

BACKGROUND: Crohn’s disease may affect as many as 780,000 Americans. Men and women are equally likely to be affected, and while the disease can occur at any age, Crohn's is more prevalent among adolescents and young adults between the ages of 15 and 35. Recent research suggests genetics, and/or environmental factors contribute to the development of Crohn’s Disease. The GI tract normally contains harmless bacteria, many of which aid in digestion. The immune system usually attacks and kills foreign invaders, such as bacteria, viruses, fungi, and other microorganisms. Under normal circumstances, the harmless bacteria in the intestines are protected from such an attack. In people with IBD, these bacteria are mistaken for harmful invaders and the immune system mounts a response.

TREATMENT: Medications that treat Crohn’s disease strive to help control the inflammation that plays a role in Crohn’s symptoms and induce remission. It’s important to note that the medication your doctor prescribes may depend on whether you have mild, moderate, or severe Crohn’s and/or where in your GI tract your disease is active. Medications may include antibiotics, aminosalicylates, corticosteroids (steroids), immune modifiers, or biologic therapies. Some people with Crohn’s disease may benefit from the diet changes, such as limiting dairy products, more low-fat foods and fiber, avoiding “gassy” foods, eating smaller meals and drinking plenty of water.

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.