Crohn's Disease is an inflammatory bowel disease (IBD) that results in chronic inflammation of the digestive tract. It is estimated that IBD (which also includes various forms of Colitis) affects over 3 million Americans.
The symptoms of IBD include diarrhea, abdominal pain and cramping, bleeding, weight loss, malnutrition, and fatigue. Unlike Colitis which affects only the large intestine, Crohn’s Disease can result in inflammation anywhere in the digestive tract (i.e., from the mouth to the anus).
There is no cure for Crohn’s Disease, but patients’ quality of life can be improved with medications, surgery, and adhering to certain diets. What are Crohn’s patients sharing on social media?
The Trends Section provides an overview of some of the most recent and relevant topics that relate to particular health conditions.
It features a selection of the topics that have the fastest growing Google search interest across the last three months, and reflects the inquiries of patients, healthcare providers, scientists, and others who are invested in the topic.
This is valuable to understand people’s interests and concerns at the present moment, and often include the U.S. states that have the highest interest in a topic.
Quilt.AI brings these trends to life through an analysis that incorporates both cultural and scientific lenses.
Search interest for Skyrizi price grew by 248% in the last 3 months, from June 2022 to August 2022.
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Skyrizi (generic name: risankizumab-rzaa) is a biologic drug that is prescribed to people with moderate to severe Crohn’s Disease, among other conditions. It works with the body’s immune system to reduce inflammation – the main cause of the pain, discomfort, and GI tract damage that characterizes Crohn’s disease.
There was an increase in searches on the cost of Skyrizi across the past three months. The drug can be expensive for patients, being hundreds to thousands of dollars per month depending on insurance status and subsidy qualification.
The growth in interest in Skyrizi may have been fuelled by the results of three long-awaited clinical trials, which were published at the end of May (1, 2, 3). These studies concluded that the drug is an effective and well-tolerated therapy for those with moderate to severe Crohn’s disease. These results prompted applications for Crohn’s-specific approval from global health authorities by the drug’s maker, AbbVie. This news would be of great interest to both HCPs and investors.
Searches for the brand name Remicade infusion (drug name: infliximab) have increased across the past three months, and searches were the highest in Pennsylvania, Alabama, Georgia, Missouri, and Maryland.
The intravenous therapy is commonly prescribed to those with autoimmune conditions, including Crohn's disease. It works by targeting a protein that is thought to cause the inflammation associated with such conditions. Remicade is approved for patients who have moderate to severe Crohn’s disease, and who have not been helped by – or who experienced complications with – other therapies.
In addition to regular patient and HCP interest in the drug, increased search interest may have been driven by the May media release highlighting research that concluded multiple switches between two infliximab biosimilars and Remicade was safe and effective for those with IBD.
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Search interest for Remicade infusion grew by 101% in the past 3 months, from June 2022 to August 2022.
Search interest for Hyoscyamine Sulfate grew by 78% in the past 3 months, from June 2022 to August 2022.
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The drug hyoscyamine sulfate (brand name: Levbid) has seen increasing search interest among those searching for Crohn’s disease information, especially in Mississippi, Tennessee, Missouri, Alabama, and Oklahoma.
Hyoscyamine sulfate is a drug used to reduce abdominal cramping and associated pains (it is mostly referred to as ‘hyoscyamine’; hyoscyamine sulfate is the extended release form of the drug). Because it can releve bowel spasms, there has been interest in its use as a pain reliever for those with Crohn’s disease.
While there is some encouraging scientific discussion about its value in IBD pain management, there is presently no solid evidence yet that supports this use. Despite this, there has been consistent interest in hyoscyamine among Crohn’s patients, and some have reported their positive experiences with it on forums like Reddit.
Searches for ‘ostomy’ were trending over the past three months as a related query to Crohn’s disease, particularly in the states of Delaware, West Virginia, Vermont, Kansas, and Nevada. Other trending terms include: ostomy underwear, different ostomy bag brands, ostomy reversal surgery, ostomy supplies near me, and ostomy support group.
The term ‘ostomy’ could refer to the surgical procedure (an ileostomy or colostomy) that creates a stoma (an opening at the abdominal wall through which waste drains when parts of the gastrointestinal tract have been bypassed or removed). The term may also be used to describe the exit point created by the surgery.
Searches for ‘ostomy’ could also refer to an ostomy bag (or ‘pouch’, ‘pouching system’), which is the medical device that patients wear post-surgery. It is attached to the abdomen and emptied regularly. For many of those with Crohn’s and other conditions who need this procedure, this bag represents a relief from disease symptoms and facilitates normal life activities.
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Search interest for Ostomy grew by 43% in the last 3 months, from June 2022 to August 2022.
Search interest for Erythema nodosum grew by 14% in the last 3 months, from June 2022 to August 2022.
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There was an increase in searches for erythema nodosum across the past three months. The majority of searches came from the states of North Dakota, Mississippi, West Virginia, Tennessee, and Nebraska.
Erythema nodosum is a skin condition that is seen in 8-15% of those with Crohn’s Disease, as well as others with IBD. It causes painful, tender red lumps to appear on the body, most often on the lower legs and arms. It is the result of inflammation emerging in the fatty layer of the skin, and is one of the manifestations of IBD that is outside of the gastrointestinal tract.
This condition can be an indicator that one’s Crohn’s disease is flaring up, so its appearance can be a helpful tool to begin Crohn’s therapies earlier. Luckily, erythema nodosum is not permanent, and often goes away on its own or improves when the underlying condition is under control.
The Culture Section highlights emerging cultural trends, new products, and notable dialogue about a variety of health conditions. The purpose of this section is to zoom in on what has been happening within the cultural and professional landscape of a particular health condition–stories that are often missed by quantitative searches.
By featuring influential social media items, patient discourse, professional dialogue, product innovations, and impactful news items, this section illuminates the lived experiences of many patients, while also providing a snapshot of the developments happening around them.
Here, Quilt.AI offers a detailed and nuanced perspective of what is new and what is meaningful.
People are using TikTok to share their personal experiences of living with Crohn’s disease; these posts can be found under hashtags like #crohnswarrior, #crohnsdiseasewarrior, #crohnsdiseasefighter, #crohnsdiseasesucks and #crohnsdiseaseawareness.
Some of these posts are from people who have undergone ostomy surgery and have stomas that accommodate an ostomy bag. The common goal among these TikTokers is to educate the general public, as well as normalize the experience for others who live with stomas.
Some recent videos have proven to be highly popular. Mel’s (@420froggirl) July 13 post documenting how the condition changed her life plans has over 1M views already. Paula Sojo (@paulasojoro) shows how she deals with life post-ileostomy; her Crohn’s-focused videos have received 10.2M likes. Renee (@beautifullybroken_rw) addresses topics related to Crohn’s management through IBD humor and body positivity, reaching 106.5K followers.
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TikTok has many videos giving Crohn’s-specific advice about diet: what to eat, what to avoid, and meal inspiration in the form of ‘day in the life’ videos that feature a typical daily diet of someone with the condition.
Some of these videos are created by experts or HCPs, while others are created by Crohn’s patients or their caregivers. Many advocate for the specific carbohydrate diet (SCD), which is a grain-free diet that is low in sugar and lactose. Others advocate for specific foods that they feel do not trigger irritation or inflammation – these foods include bone broth or items containing probiotics (e.g., yogurt, pickles, kimchi).
For many patients, finding a diet that works for their condition is a trial-and-error process. Platforms like TikTok help by giving them more visibility on the different things that have worked for others with the condition.
Some of those with Crohn’s vent frustrations and cope emotionally with the pain and inconveniences of the condition by using humor. One Instagram account that is gaining in popularity features Crohn’s-specific memes (@crohnsdiseasememes), and each post consistently receives hundreds of likes. The account is run by Brooke Wobschall, a young woman based in Wisconsin who has Crohn’s disease. Like may others with IBD conditions, she uses humor to allow others to relate to the difficult realities of living with this condition.
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The Crohn’s Disease patient community on Reddit (subreddit: r/CrohnsDisease) is a supportive forum of over 45K members, and is also open to those who have other forms of IBD as they share similar challenges. Members post about a wide variety of topics, ranging from scary medical crises to general life inconveniences that are handled with humor. Recently, a member posted a picture of the tattoo he designed that reflects the lengthy battle he has had with his colon. By answering each other’s questions and sharing pictures (of bodies, devices, procedures) members of this group are able to support each other in this virtual community.
References to public figures who have Crohn’s disease regularly appear on social media platforms like TikTok. One example of this is MrBeast, known as the most popular YouTuber in the world. He has publicly shared his battle with Crohn’s, and his name was a trending search associated with the disease over the past three months. On July 3, he posted a video titled I Didn’t Eat Food For 30 Days, which documented him engaging in a medically-supervised fasting challenge that he thought would help reduce Crohn’s-related inflammation. It has been viewed over 52M times and was widely discussed across social media. Comedian-actor Pete Davidson has also shared his Crohn’s diagnosis with the public. In 2020 he starred in a movie called The King of Staten Island, and the scene where he references his Crohn’s disease continues to be featured in social media accounts. Public figures provide inspiration to other Crohn’s sufferers by reminding them that they are not alone, and that a successful and even happy life can be possible with the condition.
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