Understand the current discourse on Ulcerative Colitis bowel urgency on social media.
More specifically:
We extracted around 2M search data points and 300 Reddit posts within the geography of the US from May 2021 to April 2023, using curated keywords and hashtags.
Using unsupervised machine learning, our proprietary in-house AI clustered linguistically related inputs into concept clusters. Our team of analysts then interpreted these clusters, teasing out nuanced discourses on the topic.
The discourse were then sized through search - based on our curated keywords. Search data was obtained within a 2-year time period (March 2021 to February 2023).
Finally, from studying the discourses, we picked apart key themes and attitudes, combined data points with other relevant information surfaced during our research, and synthesized the findings into this report.
UC concerns & embarrassment
Patients often get caught in embarrassing situations due to effects of the condition on their bowels.
Deteriorate mental & physical health
Patients face deteriorating physical and mental health due to limitations caused by their condition.
No one understands UC struggles
Patients are unable to seek comfort from those around them as their struggles are often misunderstood.
Medical gaslighting
Healthcare providers downplay the severity of UC patients challenges, leading to poor medical services.
Lack of availability of hcps & services
Inefficiencies in the healthcare systems cause long waiting periods and in-accessibility to resources patients desperately need
Patients lack knowledge
Patients are hesitant to seek medical advice as they lack knowledge around their own conditions to be able to articulate their pains.
Embarrassing stool tests for uc
Diagnostic tests such as the stool test are invasive and uncomfortable for patients, as they are perceived as dirty and abnormal.
Although it is known that embarrassment to speak about their condition is the main factor in deterring patients from seeking medical help, there are many other factors that come into play
Some of the other prominent factors include:
UC patients often experience embarrassment due to its effects on their bowels. Common symptoms can include diarrhea with blood or pus, rectal pain gas, abdominal bloating, urgency to defecate, and constipation. These often puts the patients in humiliating situations.
These symptoms not only cause make daily activities challenging for patients, but also cause worry about the condition's severity and potential complications.
Many patients seek support and tips online from others facing similar UC - related problems.
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UC patients face a cycle of poor mental health worsened by their condition - caused by symptoms such as pain, bleeding, fatigue, and limitations to daily activities, all of which contribute to distress and potential clinical depression.
Feelings of powerlessness and the need to postpone goals and dreams can further amplify depression. Anxiety arises from anticipating flare-ups, other symptoms, or therapy side effects.
These mental and physical impacts of UC may cause patients to withdraw from social life.
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UC is perceived as robbing individuals of their vitality, happiness, and precious experiences, causing an “irreversible damage” to their quality of life.
Patients often hesitate to discuss their condition with loved ones due to worries of a lack of understanding of their struggles. The constant fear of embarrassing public accidents when their condition flares up further adds to their challenges.
Denial and refusal of treatment or information may also be present among some patients.
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Online discussions highlight distrust in healthcare professionals due to medical gaslighting, where patients' conditions are downplayed or dismissed as overreactions.
Generic treatment options without proper considerations are also known to be provided by many healthcare professionals, leading to ineffective UC treatment.
Consequently, patients seek advice on online forums instead of relying on healthcare providers who may refuse to listen or take their concerns seriously.
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Many patients recounted facing significant inefficiencies from the healthcare system, particularly concerning the availability of doctors for timely consultations.
Patients often endure long waiting periods before they can access medical care and consultations. These delays can have detrimental effects on patients' health outcomes, as conditions may worsen during the waiting period.
Moreover, extended waiting times can cause frustration, anxiety, and stress for patients, who are in need of prompt attention and treatment.
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Many patients are reluctant to visit healthcare professionals for their UC, as they may feel overwhelmed by their symptoms or lack knowledge about their condition, making it challenging for them to articulate their concerns effectively.
As a result, they may hesitate to seek medical help, fearing that they won't receive the answers they need or that they won't be able to clearly communicate their symptoms.
Such concerns can be resolved by educating patients on what to expect in a GI doctor visit, through relevant resources online such as FAQs.
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he act of collecting stools samples can be an uncomfortable yet necessary task for patients with UC. Even though these samples can be crucial in diagnosing/monitoring their condition, the idea and act of transporting their own stool can evoke feelings of shame or self consciousness.
Embarrassment can also stem from the stigma surrounding bowel-related issues and a fear of being perceived as "dirty" or abnormal.
The intimate nature of collecting these samples can also leave patients feeling vulnerable and exposed.
Top needs
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Embarrassment from UC symptoms and diagnostic tests
Embarrassment can arise not only daily from symptoms of UC (bowel urgencies, bloody stools, gas etc.) but also when conducting diagnostic tests, which are often perceived as intrusive and uncomfortable. Patients often feel fear, anxiety and even shame during these situation.
Education and information
There are knowledge gaps that need to be filled in a few areas:
Inefficiencies in the system
Patients are unable to seek medical advice or treatments promptly due to long wait lists or unavailability of healthcare professionals. This can cause frustrations and even worsening condition in the course of the waiting duration.
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