Both patients and physicians agree that there may be a very clear mental health burden that comes with having a chronic, or ongoing, disease, such as ulcerative colitis (UC). This is related to the fact that this disease has such a strong impact on the patient’s everyday life.
As a clinical health psychologist, I specialize in digestive disorders, particularly inflammatory bowel diseases, such as UC. My job is to help UC patients develop the skills and tools they need to adjust to their disease, avoid feelings of isolation and loneliness, and strive to live a meaningful life.
Throughout my years of experience, I have come to see that the better equipped a patient is, emotionally and mentally, the better they will be able to manage their disease in the long run. This process goes hand in hand with the patient’s resiliency or their ability to bounce back from adversity. It is this ability to bounce back that makes many of these patients less likely to develop depression or anxiety and, in the end, more likely to report a better quality of life.
Even though resiliency is not a new concept in psychology, it is fairly new when it relates specifically to UC. My job is to provide early intervention, preferably within the first few months of diagnosis, to harness that resilience right from the get-go. I also try to give my patients clear tools that will help them manage their UC for the long term, not just the immediate.
There are some effective self-management tools designed to help you learn and correctly implement new strategies and techniques to help yourself become more resilient. They tend to revolve around the following themes:
If you haven’t already, consider adding a psychologist to your care team. They can be a great resource with whom you can talk to openly about how you are feeling and if some of these skills might be valuable to you. In the meantime, you can also check out this article, “Your emotional health matters,” which summarizes some of them.
It’s also important to remember that there’s a very big difference between surviving with your UC and thriving despite it – and this is exactly where your resilience comes into play. It’s hard to deny the distress associated with symptoms of urgency, pain, and diarrhea and these symptoms alone can trigger other symptoms, such as anxiety, fatigue, or depression.
Although sometimes you may feel like coping or settling is the best you can do, it’s important to remember self-management tools. They can help you learn and correctly implement effective strategies and techniques to better manage things like symptoms or stress to achieve or maintain overall wellness. Keep in mind, especially if you have just been diagnosed with UC, that you are resilient and you can bounce back. At the end of the day, it’s all about learning the skills and strategies to not only advocate for yourself, but to learn to better manage your UC.
If you're interested in expanding your healthcare team and think a psychologist or therapist who specializes in IBD might be right for you, keep in mind you can always search for them in an IBD Center of Excellence in your community or you could even consider some virtual therapy service providers. The important thing to keep in mind is that even though sometimes it takes a little effort, remember to reach out to your support system and never be afraid to ask for help early on, even if you are feeling okay.
Check out helpful articles, videos,
and tips about living with UC.
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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.