For over a year doctors told Byrd Vihlen that her bloating and abdominal pain were most likely caused by some sort of food allergy. When she started periodically needing to dash to a bathroom with diarrhea, the diagnosis changed to irritable bowel syndrome, a benign, but very unpleasant condition that affects muscle contractions of the gut.
Vihlen’s symptoms continued to worsen and the pain intensified. At her brother’s wedding she remembers spending much of the day in the bathroom dealing with bouts of diarrhea mixed with blood and mucous. Those new symptoms brought a new, more serious, diagnosis — inflammatory bowel disease, or IBD. It's an issue that she's now been dealing with for five years and has severely impacted her quality of life.
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How common is inflammatory bowel disease (IBD) and irritable bowel syndrome (IBS)?
It’s estimated that IBS affects 10 to 15 percent of adults in the U.S., according to the Crohn’s & Colitis Foundation. IBD is far less common, affecting 1.3 percent of Americans, according to the Centers for Disease Control and Prevention.
IBS affects the muscle contractions of the colon and though it may cause a lot of discomfort and distress, it doesn’t cause inflammation or result in permanent damage to the digestive system like IBD does.
What is Crohn's disease? What is ulcerative colitis? How are they different and what are their symptoms?
There are two forms of IBD, Crohn’s disease and ulcerative colitis. Doctors distinguish between the two by determining what parts of the digestive tract have become inflamed and how many layers of the bowel wall are affected. Crohn’s disease, the more serious of the two, most commonly affects the end of the small bowel, but it can show up in any part of the gastrointestinal tract.
In contrast, ulcerative colitis is limited to the colon. And while ulcerative colitis causes inflammation to the innermost lining of the colon, Crohn’s can affect the entire thickness of the bowel wall.
“(Crohn's) can impact anywhere essentially from the mouth to the very end of the anal canal,” said Dr. Marla Dubinsky, chief of pediatric gastroenterology and nutrition and co-director of the Susan and Leonard Feinstein Inflammatory Bowel Disease Clinical Center in New York City. Making matters worse, “Crohn’s disease affects all four layers of the bowel wall.”
In patients with IBD, the body turns on itself, attacking the gut, which becomes inflamed and painful. Like Vihlen, many patients with IBD don’t get a diagnosis right away and that delay can be critical because newer therapies that allow many patients to lead normal lives won’t work if they can’t be given early in the development of the disease. That appears to be what happened in Vihlen’s case.
“At the time they gave me my diagnosis I was told that this would not affect my quality of life, which could not be further from the truth in my severe case,” Vihlen, 31, said. “I continued to work for several months after being diagnosed but had to leave my physically demanding job due to the uncontrollable symptoms. Every day is different and I don’t know how much energy I will have until I wake up in the morning, so making social plans is very difficult and more often than not I have to cancel at the last minute.”
How do you treat ulcerative colitis and Crohn's disease?
For many patients relief can come from newer medications that were developed to target inflammatory proteins that cause all the damage.
“Our goal now is to heal the bowel and restore it back to its normal state,” Dubinsky said. “Before these medications were introduced in the 90s, the natural history of the IBD patient was to need surgery and to be on steroids for their entire career with the disease.”
Surgery was required because the unfettered inflammation would progressively damage the gut, causing scarring, which could result in blockages, Dubinsky said. There are several of these medications available and doctors will try different ones until they find which works for an individual patient.
Unfortunately the medications don’t work for everybody. “The most common reason people don’t respond to the medications is the damage has already occurred by the time they get the right therapy,” Dubinsky said. “None of our medications reverse bowel wall damage or scarring.”
Often the issue is a delay in diagnosis. “Patients are told they have IBS or they have a food sensitivity,” Dubinsky said. “It could be up to two years before they get the correct diagnosis.”
Vihlen’s disease continued to progress. She became pregnant in early 2018 and ended up spending 80 days in the hospital because of recurring infections and high fevers. Eventually her doctors decided to remove her colon to save her life. “That’s when they realized my whole colon was inflamed,” she said. “They told me I probably should have had surgery a long time ago.”
Vihlen’s baby was born by Caesarean section at the same time her colon was removed. She now has to wear a bag to collect what normally would have passed through her colon and out of her body through her rectum. Her quality of life vastly improved.
“I was basically living in the bathroom,” Vihlen said, of life before surgery.
Why do people develop IBD, ulcerative colitis or Crohn's?
Nobody knows exactly why people develop IBD.
It’s thought that three factors contribute to the development of IBD: genes, environment and the person’s microbiome. Some 200 genetic mutations have been linked to IBD, so “there is not one single gene that leads to illness in all patients,” said Dr. David Binton, a professor of medicine and translational science and co-director of the Inflammatory Bowel Disease Center at the University of Pittsburgh Medical Center.
Studies looking at identical twins raised in exactly the same environment have found that if one develops ulcerative colitis, there’s just a 10 percent chance the other will, too, Binton said. With Crohn’s, if one twin develops the disease there’s a 60 percent chance the other will, too.
There’s a suggestion that overly sanitized environments may increase the risk of IBD, as they do with other immune system diseases, like allergy and asthma. “In certain individuals, it looks like living in too clean of an environment, especially during childhood, may translate into disease later in life,” Binton said.
One thing that can make things even tougher for people with IBD is that friends and colleagues often don’t appreciate the havoc the disease is wreaking. That’s because “on the outside they might look perfectly healthy but on the inside of the gastrointestinal tract it’s a different story,” Binton said. “And often it’s embarrassing for patients to talk about some of their symptoms.”
Vihlen says she’s always happy to speak out about Crohn’s. “It’s such an isolating disease,” she said. “People don’t talk about it. So I didn’t know anything about it until I had it.”