Inflammatory Bowel Disease (IBD) Patients Experience Invisible and Life-altering Burdens
— New Survey Finds IBD Patients Often Suffer from Misdiagnosis and Pain —
May 3, 2017
IBD In America 2017, a national survey byof more than 4,000 individuals diagnosed with Crohn’s disease or ulcerative colitis (UC), reveals many people with these conditions struggle with fatigue, pain, and other often invisible symptoms that affect many aspects of daily life.
The survey, released through Health Union’s online community, CrohnsDisease.com, also finds that patients are often initially misdiagnosed. Many report struggling to find an effective treatment, but are hopeful for future treatment options.
Crohn’s disease and ulcerative colitis are the primary forms of inflammatory bowel disease (IBD). The two conditions usually affect different parts of the digestive tract. Ulcerative colitis typically affects the large intestine and rectum. Crohn’s disease usually attacks the small intestine, but can affect any part of the digestive tract. The two conditions share many symptoms, such as abdominal pain, diarrhea, and rectal bleeding. They also share non-digestive symptoms, such as: arthritic joints, eye issues, skin issues, and liver problems. Approximately 1.6 million Americans have inflammatory bowel disease. About 907,000 of this figure have ulcerative colitis and another 780,000 have Crohn’s disease.
Results reveal that receiving a proper IBD diagnosis proves extremely difficult for many patients. Fifty-seven percent of survey respondents were misdiagnosed before receiving their current IBD diagnosis. Thirty-one percent were incorrectly diagnosed with irritable bowel syndrome (IBS). Ten percent of respondents with Crohn’s were misdiagnosed with UC, while 5 percent with UC were incorrectly diagnosed with Crohn’s. Overall, 62 percent of respondents needed five or more office visits before receiving a proper diagnosis.
“I think many IBD patients are initially diagnosed with IBS because symptoms aren’t severe enough to do more extensive testing.,” said patient advocate Marisa Lauren Troy. “I also see many IBD patients initially diagnosed with ulcerative colitis, only to have Crohn’s disease and vice versa. The conditions may seem similar, but this mistake can absolutely impact a person’s treatment plan.”
“Sometimes the symptoms a person is experiencing are not gastrointestinal related (there are so many extra-intestinal manifestations of IBD), so it becomes very unclear where a person should turn or what a doctor can do,” Troy added.
These extra-intestinal manifestations of IBD are often the invisible burdens of the disease, the survey revealed. The real impact of IBD happens outside the bathroom, with 85 percent of respondents reporting fatigue as the most commonly experienced symptom, as well as the one with greatest impact on the ability to function daily. Additionally, 81 percent of respondents reported experiencing abdominal cramps/pain, 64 percent arthritis/swollen joints, 40 percent night sweats, and 22 percent mouth sores.
The result of these invisible symptoms, respondents said, is that being sick doesn’t always mean looking sick. Ninety-five percent of respondents wish people understood that they have an invisible illness and that they are sick, even if they do not “look sick.” Even physicians are believed to underestimate the impact of IBD, especially the pain, fatigue, and the effects on mental health.
“In my work with the IBD community, I’ve been amazed at how many people say fatigue is the number one symptom they would get rid of if possible, with pain being a very close second,” said Troy. “The invisible illness aspect of IBD, compounded by the fact that oftentimes it does revolve around the bathroom and is misunderstood by the public, causes many to not share with others what they are going through. This isolation only leads to a worse mental state, obviously, but also doesn’t allow for people to truly see what it is that an IBD patient goes through.”
Finding a treatment regimen can also prove difficult for those with IBD. Slightly more than half of respondents were satisfied with their current treatment plan. Most respondents reported biologics as their most commonly used treatment (46 percent of those with Crohn’s and 25 percent of those with UC). Forty-six percent of respondents have had a surgical procedure to treat their IBD or complications and 6 percent currently have an ileostomy.
The survey reflects that many IBD patients do have hope for future treatments, with half of respondents aware of at least one new medication coming to market, indicating interest in new options that may work for them.
“I think there is a lot of progress being made in the IBD world,” said Troy. “I see new drugs in the works and, most importantly, more extensive research being done to hopefully identify certain genes or other individualized things that will hopefully allow for better treatment protocols.”
“The results of this study make it clear that these conditions are greatly misunderstood,” said Tim Armand, President and co-founder of Health Union. “The known symptoms are things that people don’t like to talk about. IBD patients can easily become isolated. CrohnsDisease.com provides a forum for patients to come together and get the support they need. CrohnsDisease.com offers the latest information on new research and treatments bringing hope to the IBD community.”
A summary infographic of the survey results is also available.
The IBD In America 2017 survey was conducted online between January 3 and February 13, 2017. More details about the survey are available upon request; email Insights@health-union.com.