Finding YOUR Way with IBD
Last updated: January 2020
We conducted our yearly large survey of people who have Inflammatory Bowel Disease and asked many questions about what it's like being diagnosed with IBD as well as living with IBD. Here are the highlights of what our community shared with us:
The Long Road to Diagnosis
Getting to an official diagnosis of inflammatory bowel disease (IBD) can be a long process for many and can include visits with a number of doctors and many diagnostics tests and procedures.
The Unpredictability of Flares
IBD plays an active role in daily life. 85% of our respondents had experienced 1 or more flare within the past year and nearly 9 out of 10 had experienced symptoms within the past month.
Of those experiencing symptoms within the past month, the most commonly reported were fatigue, abdominal cramps, urgent need to move bowls, joint pain or inflammation, and bloating though
many others were reported as well. Fatigue and urgent need to move bowels are the considered the most difficult symptoms to manage.
The Many Faces of IBD Management
64% of respondents feel they play an active role in deciding about treatments for their IBD but management goes far beyond prescription medications. Those living with IBD are often looking for alternate means of managing their conditions.
Quality of Life and IBD
Though many living with IBD are able to manage their symptoms or work with their doctors on their treatment plans, IBD still plans a major role in quality of life.
32% report having difficulties meeting the needs of their family because of their IBD. 27% are forced to spend time in bed. 55% worry that their IBD will get worse. 47% have sleep issues.
IBD in One Word
When asked "If you could describe IBD in ONE WORD, what would that one word be?"
IBD is a Team Effort
While IBD may have a negative impact on many aspects of a person's life, there are some positive aspects to our findings when it comes to relationships around IBD. 74% of respondents agreed that that they felt comfortable discussing all aspects of their IBD with their healthcare professional.
And 7 in 10 of our respondents have someone actively involved in their IBD management. We hope you have someone involved in your care and that you have found our community to be helpful!
The IBD In America 2018 online survey gathered insights from individuals diagnosed with various types of IBD to better understand their diagnosis and treatment, as well as the impact on their lives. We're thankful to have each and every one of you as a part of our community!
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