The chief of the division of gastroenterology at Mount Sinai Hospital, Bruce Sands specializes in inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis. A 20-year gastroenterologist, he sees about 1,200 adult IBD patients a year.
Who’s at risk
More than a million Americans live with inflammatory bowel disease, an umbrella term that covers both Crohn’s disease and ulcerative colitis.
“Inflammatory bowel disease comprises two different inflammatory conditions that affect the digestive system and cause symptoms like diarrhea, abdominal pain and weight loss,” says Sands. “Crohn’s disease can affect any part of the GI tract, and ulcerative colitis only affects the large bowel.”
IBD cuts across different demographic groups. “Everyone is at risk of IBD,” says Sands. “People of any age, race or gender can get it.”
Although children younger than 4 are rarely diagnosed with IBD, about 20% of cases are diagnosed before the patient is 18 years old.
Historically, Caucasian populations have been at higher risk than African, Asian and Hispanic groups, but IBD is on the rise among different races around the world.
Only in the past decade have doctors come to understand that IBD results from specific abnormalities in the immune system.
“The immune system is attacking the digestive system after being triggered by the body’s normal bacteria,” says Sands. “We’ve figured out that there are about 100 genes associated with some risk of developing these diseases.”
A family history of IBD is “the most powerful” risk factor, says Sands. One in five IBD patients also has a relative with the disease.
Signs and symptoms
People manifest IBD with such different symptoms that many patients go undiagnosed for years. “The reason for that is that the symptoms are so nonspecific,” says Sands. “Not only are the signs variable from person to person, they can depend on age.”
Children are often diagnosed with IBD because they fall off the growth chart or show a loss of appetite, fatigue or anemia.
The hallmark of IBD for most people is diarrhea, abdominal pain or both. “Those are digestive symptoms,” says Sands. “But then there are nondigestive symptoms: fatigue, skin lesions, inflammatory eye conditions, joint aches, even arthritis.”
In addition, Crohn’s disease can become more complicated if inflammation leads to scarring and narrowing of the intestine, leading to blockages.
Others with Crohn’s disease may -develop fistulas, abscesses or leakage if the inflammation burrows outside the bowel.
Traditional treatment
A proper diagnosis is the first key step for treating IBD.
“There’s no single test that makes the diagnosis,” says Sands. “Almost everyone will end up needing a colonoscopy and biopsy, as well as an imaging study as a small-bowel follow-through, CT scan or MRI of the abdomen.”
For most patients, medication is the first line of treatment.
“With medication, many patients’ symptoms will resolve, their disease will be in remission, and the GI tract will heal up,” says Sands. “Our goal is that the patient will feel perfectly well and will live life as if they don’t have the disease at all.”
However, these drugs aren’t curative, so most patients will need to stay on medication to maintain control of the disease.
Doctors now have a huge battery of drugs for combating IBD. “Many patients will take anti-inflammatory drugs that deliver the medicine in different ways, and at times, corticosteroids may be used to provide short-term relief during flares,” says Sands.
Patients who need corticosteroids will often need immune-modulators, such as azathioprine or 6-mercaptopurine, to keep their IBD under control.
“The latest generation of drugs are biologic therapies, which include Remicade, Humira and Cimzia. These drugs are highly effective,” says Sands, “but they aren’t for everyone. They have potential side effects that need to be considered against the large potential benefit.”
Surgery is also one of the treatment options for IBD. “About 15% of people with ulcerative colitis might eventually need to have the whole colon removed,” says Sands. “Now there’s a restorative surgery called the J-pouch that allows you to have bowel movements with
normal control.”
Crohn’s can’t be cured with surgery, because the inflammation tends to recur in another part of the bowel. However, many patients have at least one surgery to remove the inflamed section, which works well when the right medication is taken immediately afterward.
Research breakthroughs
Over the past 20 years, doctors have made huge advances in their understanding of how IBD works.
“The genetic studies are the real research breakthroughs,” says Sands. “Although there aren’t genetic tests that let you know your risk, these genes studies help us understand what causes IBD and how it works at the cellular level.
“This gives us real promise for further breakthroughs in treatment.”
Questions for your doctor
Sands advises that the most important questions are, “What are the best medications I can stay on to keep the disease in remission?” and “What are the possible risks and potential benefits of these medications?”
“Understanding the answers to these questions will help you to form a partnership with your doctor so that you can take control of your disease,” says Sands.
What you can do
Comply with your medication regimen.
People who don’t comply have more flareups, miss more time from work and need more surgeries than patients who take their meds as prescribed.
Avoid NSAIDs.
Nonsteroidal anti-inflammatory drugs like aspirin, ibuprofen and naproxen can cause flareups in IBD. Ask your doctor about a safe alternative to control pain.
Quit smoking, if you have Crohn’s disease.
People with Crohn’s who smoke have more aggressive disease, but quitting helps to improve the disease course.
You may need extra colon cancer screening.
Patients with ulcerative colitis or Crohn’s disease affecting at least one-third of the coon can have increased risk of colon cancer. Ask if you fall in that group and whether you need regular colonoscopies and biopsies.
