Fatigue and Pain Are Most Challenging Symptoms for IBD Patients, Survey Shows

Fatigue and Pain Are Most Challenging Symptoms for IBD Patients, Survey Shows

The often invisible symptoms of chronic fatigue and abdominal pain are what most affect the ability of inflammatory bowel disease (IBD) patients to function daily, a recent survey found. More than half of survey respondents also said they were initially misdiagnosed, and many reported repeat doctors’ visits before an accurate diagnosis.

The online survey titled, “IBD in America 2017,” conducted by Health Union from Jan. 3–Feb. 13, polled 4,092 IBD patients in the U.S., including people with Crohn’s disease and ulcerative colitis (UC).

Results reveal that misdiagnoses are more common than previously thought. Many patients struggle to find an effective treatment, although they are hopeful that more therapeutic options will be made available in the future.

Being diagnosed with IBD remains challenging: Some 57% of respondents said they were misdiagnosed before receiving an accurate IBD diagnosis. Of these, 31% said they were initially diagnosed with irritable bowel syndrome (IBS). One in 10 said they were misdiagnosed with UC instead of Crohn’s disease. And 62% said they visited the doctor at least five times before being accurately diagnosed.

“I think many IBD patients are initially diagnosed with IBS because symptoms aren’t severe enough to do more extensive testing,” Marisa Lauren Troy, a patient advocate, said in a press release. “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.”

Many IBD symptoms are not gastrointestinal, making it difficult for both patients and doctors to appropriately respond, Troy added. Respondents frequently cited this invisible burden of the disease. About 85% said extra-intestinal symptoms are the primary difficulty associated with IBD. Fatigue, pain, and other symptoms most limit their ability to function daily, they said.

More than 80% of respondents experience abdominal cramps and pain, 64% have arthritis or swollen joints, 40% experience night sweats, and 22% often have mouth sores.

Almost all respondents (95%) said they wished people would be more understanding of their illness and its difficulties. And physicians underestimate the impact of IBD, too, the survey found.

“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,” Troy said. “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 appropriate treatments can be difficult for IBD patients. Just over half of respondents said they were satisfied with their current treatment, which in most cases was biologics.

About half said they are aware of at least one soon-to-be-marketed medication, indicating significant interest in new treatment options.

“I think there is a lot of progress being made in the IBD world,” Troy said. “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.”

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