Key takeaways about IBD
- The overwhelming majority of IBD patients polled in a Johnson & Johnson-commissioned survey report feeling isolated and misunderstood due to their disease.
- More than half of people with IBD consider the impact of the disease on their mental well-being as negative.
- 95% of patients seek information beyond what they get from their healthcare provider, highlighting unmet emotional and practical needs.
- Community significantly improves their experience living with IBD: Nine out of 10 patients say peer support positively impacts their journey.
“Crohn’s disease isn’t only a disease that impacts my intestines—it’s much more than that; everything is affected,” says Alison Rothbaum, an inflammatory bowel disease (IBD) patient advocate. “I can spend hours feeling nauseous or vomiting or experiencing spasmodic cramping, painful mouth sores, deep bodily fatigue, teeth and gum involvement, bone and joint inflammation with pain that can limit movements, eye issues, rapid weight fluctuations and experience multiple other organ involvement.”
Another IBD patient advocate, Marisa Troy, describes what it’s like living with ulcerative colitis (UC), the other main form of IBD.
“It has changed the way I manage almost every aspect of my life,” she says. “I need to balance conserving energy, micromanage my food and liquid intake and focus on consistently engaging in habits that keep my mental health strong. Daily pain and sleep disturbances greatly impair my ability to function.”
While everyone’s experience is different, IBD is often described as an invisible illness because people living with Crohn’s and UC may not show visible signs of disease. But for the 2.4 to 3.1 million people in the U.S. diagnosed with one of these chronic conditions, the private toll is high—and isolating.
Both Crohn’s disease and UC are immune-mediated diseases, in which the immune system responds to perceived threats by attacking the gastrointestinal (GI) tract. Symptoms include abdominal pain, frequent nausea and diarrhea, unpredictable reactions to various foods and fatigue. These can sometimes lead to surgery, including ostomy, in which the colon is rerouted to empty into a bag outside the body.
With all these challenges, it’s not surprising that IBD imposes a heavy psychological burden.
“For the patient living with IBD, this is not just a disease that affects their bowels, it’s a disease that truly changes and impacts every aspect of their life for most of their life,” says Aline Charabaty, M.D., Professor of Medicine and Director of the IBD Center at the University of Maryland Program. “But the impact of IBD on a patient’s mental and psychosocial health is often not recognized by their medical team or their social community.”
To address this unmet need for psychological support for IBD patients, Johnson & Johnson worked with healthcare professionals (HCPs) and patient advocates to develop an online IBD support community called IBD Social Circle.
In the 12 years since its launch, IBD Social Circle has reached thousands of people living with IBD through its website, social channels and in-person events. It provides patients with resources and insights about IBD, and perhaps more importantly, the opportunity to connect with other IBD patients and share stories and support.
“I don’t know if I would have made it this far without the IBD community,” says IBD Social Circle member and advocate Brooke Abbott Abron. “Having resources, being able to talk about feelings, learning how to find a physician—for me, community has been indispensable.”
And it’s why Johnson & Johnson commissioned the IBD Social Circle White Paper with research into the tangible effects of community on the lives and outcomes of people with IBD. The survey of more than 500 adults with IBD found that:
- 85% feel misunderstood
- 80% find it harder to engage with others socially due to their IBD
- 78% feel isolated
- More than half say the condition negatively affects their mental well-being
“The goal was to understand and highlight the experience of patients living with IBD and to impress upon clinicians that they’re taking care of people, not just a GI disease,” says Dr. Charabaty, who coauthored the research. “With that knowledge, the physician can effectively partner with patients to address what matters the most to them while treating their disease.”
Even Dr. Charabaty, who considers herself familiar with the psychosocial burden of IBD, was surprised by some of the results.
“The level of isolation, depression and anxiety; how patients feel stigmatized and misunderstood—that was all an eye-opener for me,” she says. So, too, was the positive impact of community on those burdens.
Keep reading to learn more from Dr. Charabaty about the critical role of community in helping people with IBD achieve better outcomes.
Q:
Social support is important for anyone living with a chronic condition, but that seems especially true for people with IBD. Why is that?
A:
In our survey, the overwhelming majority of patients said they feel isolated and end up limiting their social circle. At the same time, these patients, whether they are young or older, students or professionals, very much need support from those around them to help them cope with the disease and manage their medical needs. So that’s a big contradiction.
Many patients are teenagers or young adults when they’re diagnosed, so they’re dealing with a chronic disease that requires regular treatments, blood work, medical appointments, scans and colonoscopies, all of which can make them feel like their dreams for the life they imagined for themselves are being cut short.
Then there’s the day-to-day management of life with IBD: getting to medical appointments, going for infusions or surgery, dealing with complex decision-making in terms of treatments. The disease symptoms and treatment side effects can be deeply disruptive too.
Often patients report having overwhelming fatigue and body-image issues. At social and family gatherings, they’re often not able to eat what other people are eating, or they may hesitate to travel to be with loved ones because of constantly needing to have quick access to the bathroom.
So there is an “invisible” struggle and burden the patients live with that is not clearly appreciated within the confines of a medical visit.
That helps explain why 95% said they look for IBD information and resources beyond what their HCP gives them, which tells us that their support needs are often not being met.
Q:
Why is it so crucial to treat the psychosocial impacts of IBD alongside the physical symptoms?
A:
Many patients with IBD can feel like they’re the only ones who are not coping well with the diagnosis, especially early in the journey, when they haven’t yet found the right treatment and the disease symptoms are active.
Those feelings, along with worry about whether they’ll be able to manage the disease, heighten the depression and anxiety they may already be experiencing while dealing with pain, diarrhea and bathroom accidents. In fact, our survey found that 52% of people with IBD consider the impact of the disease on their mental well-being as negative.
When people with IBD also have depression or anxiety, they have a higher rate of IBD flares and use of urgent care—meaning the symptoms come back more often—and a higher rate of being hospitalized with a flare. And it doesn’t stop there.
Once they leave the hospital, those with depression are more likely to be readmitted within 30 days of discharge.
So, with all that in mind, it’s extremely important for us as clinicians to open the conversation about mental health and mental support and reassure patients that they’re not alone and that there are resources to support them in this journey.
Social support for IBD is like a marathon as opposed to a 5K—you need help every step of the way.
Q:
How does peer-to-peer support impact patient outcomes?
A:
When they have a safe, no-judgment space with others who have IBD, patients feel seen, heard and understood. They recognize that they’re not alone and that others have had similar journeys, with similar hopes, challenges and fears.
They also see patients who are now on the other side, who’ve learned to manage their life and their disease and who are not just surviving but thriving. Our research found that:
- 86% of people actively involved in an IBD community said it had a positive impact on their IBD journey. Not only did they feel like they weren’t alone—that others had gone through the same emotional roller coaster—but they gained insights that had a positive impact on their IBD care.
- 39% reported that being part of a community improved their communication with their medical team, because they now had the tools to express themselves and felt more comfortable sharing things with their doctors after learning that others had, too.
- 39% said they had a better understanding of their treatment options after interacting with a community.
Q:
What are the specific moments in a patient’s IBD journey in which community support seems to make the greatest measurable difference?
A:
Social support for IBD is like a marathon as opposed to a 5K—you need help every step of the way, though there are times of higher need.
The initial diagnosis is perhaps foremost among these: Patients are having a lot of upsetting symptoms; doctors are talking about different treatment options and potential side effects, maybe talking about surgery. It can be overwhelming, especially for young patients.
Experiencing a flare-up while on an IBD treatment can also be very difficult, because there’s a sense of defeat or failure, along with heightened anxiety about possibly running out of treatment options. It’s so important to hear from others who have gone through a flare to keep perspective.
Needing surgery is another key moment. Major surgery requires a hospital stay and dealing with pain, physical limitations, adjusting the diet and taking time off from school or work for recovery. Not to mention the anxiety around possibly having an ostomy bag.
In addition to the key milestones of the disease, people living with IBD may also face challenges around big life changes—such as a new job, a move or starting a family—when community support is also critical.
Q:
How does your work as a researcher influence your work as a practicing gastroenterologist?
A:
Any patient-focused research really helps you become a better physician. When a clinician hears what patients are going through, they can have a more holistic, comprehensive approach to patient care.
The survey results made me see my own bias and preconceived notions of who needs help. I now have a different appreciation of the challenges patients face.
So now I ask everybody, even those who seem to be doing very well and whose disease is in remission: How are you coping? How is the disease affecting your life? I ask about feelings of anxiety or depression; I’m more proactive.
I’ve realized that patients often want to tell the doctor they’re doing well since they feel they shouldn’t burden us, or they’re embarrassed to share certain things. So, I’ll ask: How is this affecting your social life, your personal and sexual life? Your work, academic and family life, your pursuit of hobbies?
Patients need to know that we see them beyond their disease, that we want to support them as a whole person. And to be honest, we as clinicians become better people by having these discussions with our patients.
My patients teach me about resilience, overcoming challenges and thriving despite living with a chronic illness like IBD. And that is a true clinician-patient partnership.
