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Want to know what I’ve learned after 40 years as an inflammatory bowel disease (IBD) nurse? That ulcerative colitis (UC) affects the whole person, not just their colon. That’s why your approach to managing it should cover every area it impacts. The best way to do that is by surrounding yourself with the right team of healthcare professionals. It can make an enormous difference.
Who should be on your team? When it comes to building your team, you’ll of course need people who can help manage symptoms, but don’t forget to include people who can help care for your overall physical and emotional well-being too. Since UC affects each person differently, their comprehensive care team, also known as multidisciplinary care team, might be slightly different as well. Some might need a dietitian while others could benefit from the help of a social worker. But, generally speaking, these are the six healthcare professionals I recommend to most of my patients.
IBD nurse. Your IBD nurse will likely be an important member of your care team, as they will be responsible for the coordination and management of all the members of your care team. Not only will they be able to help you decide who you may want to be on your team but they will want to ensure that the members of your care team are on the same page to help you reach your health goals.
This means that your IBD nurse will likely be the frontline person that first gets your call, or calls you back. A lot of times, they’ll have the answers you’re looking for and, if not, they may be able to help you find the person who does. Your nurse is also the person handling most of your day-to-day management in between visits, like checking blood levels, and doing all the other testing. So use them often. They can be your biggest ally in your battle with UC.
Gastroenterologist. Because UC is a disease of the colon, you’ll need a dedicated specialist who understands that part of the body best. That would be your gastroenterologist. They specialize in disorders and diseases of the digestive tract, and will be able to share the latest research and treatments for UC.
Registered dietitian. Dietary issues can vary by individual. That means you’ll want someone to educate you on proper diet, the right foods to eat, as well as trigger foods to avoid. A registered dietitian who specializes in IBD can help tailor a well-balanced diet that is also in line with your care team’s treatment goals for you. They’ll guide you in making choices that support good nutrition.
Therapist, support group, social worker, or mentor. As you know, UC can produce a lot of stress and anxiety, as well as feelings of isolation. Consider talking to someone who can help you with the emotional and mental challenges UC can create. Many patients find a licensed therapist, support group, social worker, or mentor to be a great resource to help them deal with the psychological aspects of this difficult disease. For many people, UC is mentally distressing. That’s why having someone on your team able to help you address those issues is so important.
Primary care physician. Your primary care physician provides general medical care because your overall health is their main responsibility. It’s important for you to keep in mind that some healthcare plans require people to see their primary care physician so that they can be referred to a specialist, such as a gastroenterologist.
Physician assistant or nurse practitioner. Physician assistants or nurse practitioners work collaboratively with your primary care physician or with your gastroenterologist. They assist in assessing and monitoring your disease to ensure timely access to care and treatment effectiveness. You may have several visits with them between appointments with your doctor, where they can address many of your questions about your disease, treatment plan, and quality-of-life issues.
It’s never too soon to start building your comprehensive healthcare team. Begin by talking to your primary care physician or your gastroenterologist. They should be able to point you in the right direction. And if they can’t, there will be others in your UC network who can, so be sure to ask around. With the right team, and good communication, you’ll have the best chance of achieving and maintaining remission. Remember, UC isn’t something you have to go through alone.
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.
