For information about the design and data-weighting of the UC Narrative Global Survey, click here.
There’s no question that ulcerative colitis (UC) has its challenges, but it’s important not to become discouraged. With preparation, education, and communication with your doctor, you can do more than just endure the ups and downs of UC; you can live your life.
People with UC are suffering from symptoms that may impact their everyday life choices. Unfortunately, some people living with UC may accept a reduced quality of life, adjusting to a “new reality” for themselves.
*Result based on net responses (strongly agree/somewhat agree, etc.)
This feeling of having to “power through” leads some people living with this disease to alter their life choices, with some UC patients even sharing that they feel they would be a more successful person if they didn’t have UC.
While there’s no way to know for sure, it’s important to not allow that belief to keep you from making the best of your situation. Keep sight of the goals you would like to accomplish in life. Don’t feel like you need to accept a “new reality” for yourself – your UC doesn’t have to define you.
Be honest. Remember, be honest with yourself, your gastroenterologist (GI), and your entire healthcare team.
Here are tips that can help:
Track your symptoms as well as your thoughts and feelings. Especially make note of the circumstances when you might not be feeling great. It can help you have a more comprehensive view of how things are going and of what you and your doctor may need to address.
Share with your doctor and other people in your life! Don’t hold back, even if it’s embarrassing or awkward. This will help them get the big picture and better understand why you’re feeling how you’re feeling.
Become as informed as possible. Learn all you can to be sure you’re getting the information that’s right for you. Check out these tips to get the most out of your conversation with your doctor.
Be confident. Don’t be afraid to ask questions.Your GI and their healthcare team are there to help make sure you understand what’s happening with your condition. It’s important to understand that just because you sometimes feel okay, that doesn’t mean that your UC is fully controlled.
Be ambitious. Think of the day-to-day things that you enjoy in life. Think of the things you wish you could do again. Start there and work with your doctor to set goals that are right for you.
Be proactive. The key is to set goals – goals that are specific to you, your UC, and your disease management. When goal setting with your gastroenterologist, make sure to keep track of your achievements and also consider tracking your overall well-being, which could include diet, exercise, or stress. Make sure to stick with it and then reevaluate your success.
And last but not least, don’t feel like you have to do any of this alone. Talk to your doctor about setting realistic goals, let them know how UC is impacting your life, and provide feedback. You are your best advocate and staying in control of your UC requires keeping track of your symptoms in between your doctors’ appointments. Make sure to keep your doctor and your healthcare team informed about what is and what isn’t working for you; it may help them better treat your UC.
Check out helpful articles, videos,
and tips about living with UC.
Pfizer is working with adults living with UC and medical professionals to bring you informative content. Register and be the first to know when new content is available on TalkingUC.com.
The UC Narrative patient survey was conducted online and via telephonei by Harris Poll on behalf of Pfizer between August 23, 2017, and February 9, 2018, among 2,100 adults ages 18+ residing in Australia (215), Canada (215), Finland (105), France (169), Germany (210), Italy (210), Japan (210), Spain (214), the United Kingdom (251), and the United States (301) who have been diagnosed with ulcerative colitis (UC), have had an endoscopic procedure to confirm their diagnosis, have not had a colectomy, have been to a gastroenterologist or internist’s officeii in the past 12 months, have ever taken a prescription medication for their UC (excluding those who have only ever taken 5-ASAs), and provided informed consent to complete the research. Raw data were not weighted at the individual country level, and are therefore only representative of the individuals who completed the survey.
The primary goal of the survey was to characterize the experiences of UC patients who are believed to be living with moderate to severe disease or those who may be living with poorly controlled disease. The choice to focus on these patient types was based on the assumption that these groups (versus those with milder disease) were more likely in need of support and resources, which the survey could help better identify.
To achieve the goal of focusing on those with moderate to severe disease, self-reported medication history was used as a proxy for disease severity. Patients with “moderate to severe” disease were defined as those who have ever taken a biologic or immunosuppressant for their UC, or have taken steroids for four or more of the past 12 months. Patients with a “milder” form of the disease were defined as those who have never taken a biologic or immunosuppressant, and those who have taken steroids for three or fewer months of the past 12 months. The research excluded patients who have never taken a prescription medication for their UC or have only ever taken a 5-ASA to control their UC. More than 80 percent of total completes were from patients whose disease was classified as “moderate to severe,” using this definition, with “milder” patients capped at no more than 20 percent of total survey completes. Results from the UC Narrative patient sample survey may not reflect the experiences of the broader UC population.
The UC Narrative physician survey was conducted online and via telephonei by Harris Poll on behalf of Pfizer between August 23 and February 9, 2018, among 1,254 adults ages 18+ residing in Australia (90), Canada (80), Finland (17), France (154), Germany (152), Italy (157), Japan (151), Spain (151), the United Kingdom (153), and the United States (149)iii who practice as a gastroenterologist, internist with a gastroenterology focus, gastroenterology internist, or gastroenterology surgeon,iv do not primarily practice in a long-term care facility or hospice setting, see at least 10 patients with UC each month (or a minimum of five patients with UC per month in Japan), with at least 10 percent of these patients currently taking a biologic medicine for their UC (physicians were asked to think about their experiences treating patients in their practice whose UC is moderate to severe throughout the survey), and provided informed consent to complete the research. Physician results in the United States were weighted by region, years in practice, and physician gender. In all other countries, physician results were weighted by age and gender to ensure alignment with the actual proportions in the population of gastroenterologists in each country.v UC Narrative physician sample survey may not necessarily reflect the experiences of all gastroenterologists.
For both patient and physician data, for the global, 10-country total, a post-weight was applied to adjust for the relative size of each country’s adult population within the total adult population across all countries surveyed. The unweighted sample sizes reflect the total number of patients and physicians who completed the survey in each country, while all reported percentages are calculated based on the weighted global total described here. Proportionate weighting for combining multicountry data into a single total is a common practice because it relies on externally recognized population data to achieve a global total that more accurately represents the real-world relative to the adult populations surveyed. There are limitations to this approach; when countries surveyed have widely varying population totals, the data from smaller countries may get weighted down within the total, thus reducing their share of voice when grouped together with the larger countries.
In the United States, the research method and survey questionnaires were reviewed and received institutional review board (IRB) approval from WIRB-Copernicus Group.
Language referencing data of those who agree with the statement, includes those who indicated both "strongly agree" or "somewhat agree" within the survey.