New research published in Clinical Gastroenterology and Hepatology offers a glimpse into what Crohn’s disease may look like before it officially begins and the findings could have major implications for how we understand, monitor, and potentially prevent the disease in the future. As an IBD mom of three kids ages 8, 7, and 4, research like this always feels a bit bittersweet. While I’m grateful for the strides in research, I’m apprehensive about the burden and grief I would feel if I was able to know if my children would one day receive the same diagnosis.
As someone diagnosed with Crohn’s at age 21, I’m grateful for my two decades of blissful, perfect health. Had I known a complicated chronic illness would one day riddle my body, I’m not sure how I would have coped and dealt with that news.
This week on Lights, Camera, Crohn’s a look at what the latest research discovered, the complicated emotions IBD parents may feel, and what the future may hold for us all as a community.
Why This Matters: Crohn’s May Start Long Before Diagnosis
The study found that certain immune responses in the blood, specifically elevated IgG antibodies targeting a conserved region of bacterial flagellin (a protein found on gut bacteria) were present years before people were diagnosed with Crohn’s disease. In other words, the immune system appeared to be reacting to gut bacteria long before symptoms like abdominal pain, diarrhea, or weight loss ever showed up.
This study followed 381 first-degree relatives of Crohn’s patients, 77 of whom went on to develop the disease. Among them, 28 (more than a third) had elevated antibody responses.
One of the most important takeaways from this research is the timing. Most Crohn’s biomarkers are identified after the disease is active. This study, however, suggests that immune dysregulation may begin well in advance of clinical disease. This supports the idea that Crohn’s develops gradually rather than suddenly.
That distinction matters. If Crohn’s truly has a long preclinical phase, it opens the door to earlier monitoring and potentially earlier intervention, especially for people who are already at higher risk, such as first-degree relatives of those living with Crohn’s disease. A first degree relative is a parent, child, or sibling.
According to the Crohn’s and Colitis Foundation, 36% of children born to two parents with IBD will develop the condition at some point during their life. The risk is substantially less when only one parent has IBD, with The National Human Genome Research Institute sharing there’s a 7-9% chance.
A Potential Blood Test for Risk, Not Diagnosis (Yet)
It’s important to be clear: this is not a diagnostic test and it’s not something patients can request from their doctor today. But it does raise the possibility that, one day, blood-based immune markers could help identify those who are more likely to develop Crohn’s before symptoms begin.
For families affected by IBD, this kind of risk stratification could be meaningful. Instead of waiting years for symptoms to escalate, or for damage to occur, high-risk individuals might one day be monitored more closely or offered early preventive strategies. As an IBD mom, I feel as though I would struggle with knowing whether this was something I wanted to dig deep for, while also not wanting to get in the way of stopping disease progression. It’s not a black and white situation by any means. If these types of blood tests are available when my kids are teenagers, and I were to get results that broke my heart, I’d feel obligated to be transparent and share—would I really want my kids, who have witnessed me living with Crohn’s their whole lives, to know this would one day be part of their own story? It stresses me out just trying to imagine it.
What This Could Mean for Prevention Research
Another compelling aspect of the study is that the immune response was directed at a conserved portion of bacterial flagellin. This means it’s shared across many gut bacteria. That finding has sparked discussion about whether future therapies or vaccines could target these immune pathways in people who are high risk for Crohn’s.
While prevention remains a long-term goal rather than a current reality, this research reflects a broader shift in IBD science: moving upstream to understand why Crohn’s starts, not just how to treat it once it’s already established, and as an IBD mom I am certainly grateful for that.
What This Doesn’t Mean (Yet)
As exciting as this research could be, it’s not a crystal ball. Not everyone with these immune markers will develop Crohn’s, and many people with Crohn’s were never tested years before diagnosis. Larger studies are still needed to validate these findings across diverse populations and to determine how predictive these markers truly are.
For now, this study adds another piece to the puzzle, one that reinforces what many patients already know intuitively: Crohn’s disease doesn’t start the day you’re diagnosed.
The Bigger Picture
Our community often experiences years of delayed diagnosis, misattributed symptoms, and unanswered questions, so research like this matters. It shifts the narrative from “why didn’t we catch this sooner?” to “how early can we understand and intervene?”
While we’re not there yet, this study represents an important step toward a future where Crohn’s disease is identified earlier, monitored more thoughtfully, and one day possibly prevented altogether.
For parents living with IBD, research like this can carry an added emotional burden. The idea that Crohn’s disease may be detectable years before symptoms begin can stir complicated feelings, especially for those who worry about whether they’ve passed on a genetic risk to their children. Some parents may want every possible tool to protect their child’s future health, while others may find the thought of early testing anxiety-provoking or guilt-inducing. There’s no right or wrong response. I get it and struggle with how I’d handle this, too. Living with IBD already requires navigating uncertainty, and this research underscores how deeply personal decisions about risk, knowledge, and monitoring can be for families. As science moves forward, it will be just as important to support parents emotionally as it is to advance early detection tools.
Community and chronic illness can be thought of as a beautiful tapestry. Our lives and experiences, while unique, become intertwined, and once we recognize we don’t have to embark on the isolating journey alone, we are forever changed. We are so much stronger together. Johnson & Johnson’s published White Paper developed through IBD Social Circle entitled, “The Power of Community in Inflammatory Bowel Disease: Coming Together to Reduce physical and psychosocial impacts” highlights key touchpoints of the patient and caregiver experience and shows the ripple effect of Inflammatory Bowel Disease and how complexity and intricacies of Crohn’s and ulcerative colitis reach far beyond the gut. IBD impacts our careers, our relationships, our identities, our mental and emotional health, and it often dictates how our life stories unfold.
This week on Lights, Camera, Crohn’s, I’ll walk you through the valuable insights from the white paper and show what the research uncovered when it comes to stigma, mental health, online communities, and more. You’ll hear heartfelt reactions from IBD patients and caregivers about the findings and hear what two leading gastroenterologists have to say about the research.
Leaning on the lifeline of community
Jessie Magaro was diagnosed with IBD when she was 15 years old. Her reaction to the white paper speaks volumes.
“I was almost in tears reading this research. When I was first diagnosed as a child, there was no readily accessible community to lean on. It was isolating, depressing, and incredibly lonely. But when my disease returned in adulthood after years of remission, I realized the world had changed,” she recalls. “Suddenly, there was visibility. People sharing their stories openly online, entire communities forming on social media. For the first time, I could connect with others who were like-minded and like-bodied, people who understood my fears, my choices, and my fight.”
That connection wasn’t just comforting; it was lifesaving. It became essential to Jessie’s mental health and gave her the strength to make the hard, necessary decisions about her body and her health that helped her survive.
The white paper digs deep into how and why patients and caregivers crave additional information and resources within the IBD community. According to the survey, “Nearly all people with IBD (95%) are looking for IBD information and resources beyond what their physician provides or discusses with them.” The survey found:
42% of people with IBD have participated in online IBD support groups
37% have engaged with social media forums or group chats on platforms like Facebook and Reddit
28% have followed influencers who share their IBD journey on social media platforms.
Dr. Jami A. Kinnucan, MD, is an IBD specialist at the Mayo Clinic Florida. She says, “This research is profoundly impactful for the IBD community, as it highlights many of the challenges that patients experience but often do not share with friends, family, or even their healthcare team. It opens the door for important conversations within the IBD community and reinforces the need for clinicians to explore the broader effects of disease beyond physical symptoms.”
The pediatric caregiver perspective
Cindy Hancock’s daughter was diagnosed with Crohn’s at age eight, she tells me if there can be a “best” part of being an IBD caregiver, it is “absolutely the online community she’s been so grateful to find and learn from.”
As a result of how heavily her and her daughter have leaned on and benefited from the support of others who “get” the reality of life with IBD, Cindy was not surprised by the findings of this white paper that highlight the power of community.
“The courage to seek out a second opinion, and bring info shared by the second-opinion gastroenterologist to our established gastroenterologist? CHECK. Information about how to interpret iron blood work that helped me advocate for transformational care for my daughter, CHECK. Learning what intestinal ultrasound is, and why it presents an amazing opportunity for IBD care and joining forces with other patients to informally advocate for its increased usage in the U.S., CHECK. Anecdotes about drug interactions via lived experiences of other people with IBD, CHECK. Recommendations about favorite heating pads, CHECK. Learning from another Crohnie that gummy bears who aren’t red or purple are part of a colonoscopy prep diet, CHECK!! I could go on and on all day!” says Cindy.
She feels fortunate that her daughter has a good team of physicians, and they always seek their opinions first of course. But Cindy feels the tidbits they’ve gleaned from the IBD community online are what have transformed her daughter’s quality of life with Crohn’s. “The impact is incalculable.”
Cindy credits patient advocates for helping guide healthcare decisions, saying “the IBD community is akin to a warm blanket. We very rarely interact with people in the “real” world who live with IBD, but every day we get to interact virtually with people just like us who understand this life… and that sense of community is priceless.”
Bridget Brown’s daughter was diagnosed with Crohn’s two years ago when she was eight. She says, “Humans are built for connection—but when you’re handed a diagnosis that isn’t widely understood, it can feel incredibly isolating. Most families reach an IBD diagnosis after some really dark, confusing months and years. The IBD community brings the light back in.”
She says as a parent, hearing other people’s stories and experiences is everything.
“I don’t know what it feels like to live inside my daughter’s body, but the insight gathered from the online IBD community helps me support her better. There’s real strength in shared stories, and there is nothing more valuable than being heard from someone who truly gets it.”
Dr. Hilary Michel, MD is a pediatric gastroenterologist at Nationwide Children’s Hospital in Ohio. She says in reading this white paper she could not help but think about how the concepts also apply to children and adolescents with IBD.
“In addition to physical symptoms, youth with IBD are also at increased risk for anxiety and depression and school absenteeism. In a period of life characterized by marked changes in development, independence, and relationships, the diagnosis of a chronic disease like IBD can be incredibly impactful,” says Dr. Michel. “Access to the IBD community for education and support is likely to be equally as important to young people with IBD and already exists in formats including in person and online groups, advocacy efforts, and camps, such as Camp Oasis. Just knowing they are not alone with IBD is so powerful. Additional attention should be paid to privacy and safety concerns when developing interventions for young people.”
Dr. Michel also feels support for parents and caregivers of youth with IBD is essential.
“Parents are at risk for missed work themselves and experience immense guilt and stress related to caring for their child. Connecting with other parents who have “been there,” sharing tips and tricks to navigate their journey, or simply having a listening ear can go so far in allowing parents to feel supported.”
The Power of the IBD Social Circle: A Veteran’s Perspective
Suzy Burnett is an IBD mom of three and blogger at Crohnie Mommy was diagnosed with Crohn’s in 2008. She says when the white paper was published, she read, and re-read, the IBD Social Circle’s latest report.
“The first reading left me stunned by the raw reality encapsulated in the statistics. The second reading became a series of nods: “Yes, that’s me,” I found myself thinking with every single finding. I found the white paper to be fascinating, maddening, raw, and often heartbreaking. Mostly, because I have personally walked down, or known someone in the IBD community who has walked down, every single path described. Simply put, this report is SPOT ON.”
Suzy says her own patient experience deeply resonated with the segment that focused on the critical role our community plays in every aspect of life with IBD: from the shock of diagnosis and the struggle with relationships to the relentless search for answers and navigating new medications.
The Birth of a Community
“When I was first diagnosed, Crohn’s disease was relatively unknown. The internet was not the wealth of knowledge it is today,” explains Suzy. “I was handed a packet of paper, told there was no cure, and left to grapple with denial, depression, and severe flares for years.”
As Suzy grappled with her disease and the years ticked on by, she felt as though the IBD community was born.
“Or we all simply started emerging from the woodwork, bloggers, patient advocates, and a growing number of patients sharing their stories. It felt as if we made an invisible pact: to stick together, stay strong, and fight for each other. It felt like a window of hope opened: I found others. Others like me.””
Suzy says the research done in this report should be shared with every newly diagnosed patient and every “old veteran”.
“We are IBD warriors, and this white paper embodies that truth to the core. It is an invaluable resource for all who suffer from IBD, as well as for the caregivers and family members who stand by their side.”
Recognizing the importance of treating the whole self
Katie Connelly has lived with Crohn’s disease for more than 20 years. She says hearing that patients are afraid to share their emotional burdens with their HCPs is defeating and eye-opening.
“As someone who is lucky enough to have one of those GI specialists who sees me as a whole person, it is imperative that I let her know how I am feeling about my quality of life. It helps her gauge where I am both physically and emotionally with the treatments I am on,” she shares. “With the mind/gut connection being such a real thing, it needs to be instilled in every HCP’s practice to inquire on how their patients feel in life. The responsibility cannot always fall to the patient to disclose everything.”
As a woman living with perianal fistulizing Crohn’s disease, Katie knows firsthand how isolating and complicated the patient journey can be. She credits the patient community for helping her cope and get educated about the questions she has had about intimacy and sexual dysfunction.
“I have had fistula for six years now and have both dated and ended up married while living with them. It has been far from easy, and there is a lack of understanding and communication around it. I hope to start bringing up my own sexual experiences and helpful tips through my own community, Badass with a Bad Ass in hopes to help lower those numbers. I just want us all to feel less isolated in this.”
Being wary of misinformation shared online and in person
Kelly Dwyer says she’s benefited from both in person and online IBD communities over the many, many years of living with her disease. While she’s grateful for community support, she believes misinformation is one of the greatest threats to IBD patients.
“When I attended my first support group after I was diagnosed, I found a community of people who were anti-biologic and unsupportive of many questions I had about treatments and medical care for IBDers. I was so dismayed to see that they were the only in-person support community in one of the US’s largest metropolitan areas, and promoting non-science backed theories of IBD care,” recalls Kelly. “Commitment to strict content moderation and upholding science-backed information is one of the reasons that support communities affiliated with national IBD organizations are an essential part of IBD care and connection.”
While she agrees the online community is beneficial, she also wants patients and caregivers to always have their guard up and be aware of the misinformation and opportunists who go after vulnerable IBDers by attempting to spread fake cures and push “snake-oil” treatment to a make a quick buck.
“As with many chronic illness communities, the newly diagnosed are uniquely susceptible to bad actors because of the desperation and grief that comes with being diagnosed with this incurable, devastating disease,” says Kelly.
While she believes many patient advocates seek to promote accurate and data-driven information, such as advocates like Tina Aswani-Omprakash and Brooke Abbott Abron who are cited in this study, Kelly wants to warn others that just as many others are publicly sharing their support for dangerous treatments, unregulated supplements, and potentially harmful lifestyle and diet choices.
“National organizations, physicians, patient advocates, and support communities like IBD Social Circle are doing their best to create easily accessible, data-driven, and science-backed resources for education for IBDers at all levels of managing their disease, and from diverse cultural and racial backgrounds. Making sure these resources speak loudly and spread far online will be a vital step to combatting the harms of misinformation. We all need to do as much as we can to educate and inoculate fellow IBDers against the dangers of anti-science rhetoric,” advises Kelly.
The financial trade-off and workplace woes with IBD
Ian Goldstein has lived with Crohn’s since 16 years old. The white paper’s discussion on disclosing diagnosis in the workplace and requesting accommodations hit home for him.
“I was fearful of mentioning my disease on job interviews and at work because I did not know if my co-workers would view me differently, if they would think I was less equipped for my role or more expendable. For a long time, I had to get weekly iron infusions, and I don’t know if my employer didn’t like that I worked remotely because of this, says Ian.
The white paper highlights a 2024 survey from the Crohn’s & Colitis Foundation that found more than 40% of people with IBD have made significant financial trade-offs to afford their healthcare, including giving up vacations or major household purchases, increasing credit card debt, and cutting back on essential items such as food, clothing, and basic household items.
“YES! 1000% YES. If I ever take a vacation, it is a weekend trip upstate because I need to make sure I have money set aside to afford my one thousand dollar a month health insurance premium in addition to the deductible and copay costs. If healthcare didn’t cost so much, my life would look quite different,” says Ian.
Everything from career impact to diet resonated with Ian. The focus in the research on foods and beverages that are staples for most but may be on the list of foods people with IBD should avoid (such as fried or greasy foods, spicy foods, sugar-sweetened drinks, and whole-fat dairy). Ian believes it’s important that people understand that it is not just the “unhealthy” or “junk” foods that can exacerbate symptoms.
“For 10 years I avoided vegetables and nuts completely because they put me at risk of having a bowel obstruction. The same foods that would make me healthy could also send me to hospital,” explains Ian.
Falling back on community for overall well-being and treatment decisions
The white paper highlights that, through IBD community engagement and support, patients have reported positive impacts on:
Physical well-being and treatment decisions
39% reported that it has helped them identify ways to make improvements in their physical health and well-being
39% learned how to improve their ability to communicate with their HCPs
39% became more informed about IBD treatment options, including different treatment options they did not know about before
32% learned how to better advocate for themselves with their HCPs
Ian couldn’t agree more, “Community has been a game changer for me. Because of two friends I met from social media, I learned about an amazing surgeon in New York who did an outstanding job with me in 2025, and I haven’t felt this good in years.”
He puts on comedy shows in New York centered around healthcare and because of one show called, “The Autoimmune Saloon,” Ian crossed paths with an audience member who mentioned Intestinal Ultrasound. “No doctor had ever mentioned it to me, but this random audience member did. Because of her, I’m able to get this test, which is much less invasive and informative when it comes to my Crohn’s. This is how community makes an impact: we teach others what we know, things that doctors may never think to tell us.”
Facing the music and fighting the stigma across all races and cultures
According to the white paper, up to 84% of adults with IBD feel that there is perceived disease-related stigma against them, which results in social stereotypes making them seem unreliable or antisocial.
IBD has historically affected White populations at a higher prevalence than other groups; however, the research shows the incidence of IBD is increasing in all races and ethnicities across the US, including in people who are Black, Hispanic, Latino, and East or Southeast Asian. Research also suggests that Black, Asian, and Hispanic individuals with IBD may have a higher incidence of more severe disease.
Kimberly Hooks says, as a Black woman living with IBD, she knows exactly what it feels like to be dismissed, overlooked, and told that her symptoms didn’t fit the picture.
“I was diagnosed late, and even after that, there were delays in getting the medication I truly needed for my severe Ulcerative Colitis. That delay cost me my colon. My story isn’t unique; it reflects what so many Black and Brown patients experience when our pain is minimized or our symptoms aren’t taken seriously,” Kimberly shares. “That’s why this research matters so much. It confirms what we’ve been living. IBD does not discriminate, and our communities are being affected at rapidly increasing rates. This is why I advocate, because visibility saves lives, and every person deserves to be heard, believed, and treated with quality care.”
Kimberly went on to say how incredibly grateful she is for the IBD Social Circle creating a safe space for patient voices and grounding this work in real lived experiences.
“Partnering with advocates to highlight our real stories and pairing those stories with research exploring the physical and psychosocial factors impacting patient care is powerful. It shows the benefits of community and how connection can support people with IBD in every part of their disease management. This kind of work gives me hope. When patients and community come together, we don’t just raise awareness, we help shape a better, more equitable future for everyone living with IBD,” she says.
Acknowledging the struggles IBD can present in motherhood and beyond
As a patient leader and an IBD mom of two small kids, Michelle Pickens appreciates the white paper for a multitude of reasons, especially the notion that we can appear “fine” even while we’re struggling. She also valued the discussion around the wide range of symptoms patients face and how this variability can delay diagnosis and access to support.
“That “in-between” period—when someone is sick but unsure where they fit or where to turn—is incredibly challenging. You experience symptoms consistent with IBD, yet you don’t quite feel part of that community without a formal diagnosis,” Michelle explains.
The section of the white paper on remission really resonated with Michelle. There is often an expectation that once you begin treatment, you will immediately feel better, but that is not always the case. She says it’s important to acknowledge the need for community support when clinical measures indicate remission, but physical symptoms persist.
“I was glad to see the impact on the family unit addressed, especially in areas such as domestic responsibilities and parenting. These are areas where I personally struggle at times. In the workplace, accommodations can be requested to help manage IBD symptoms, but parenting offers no such structure,” Michelle shares. “As a mother, it can be difficult to find someone who can step in and keep things running the way you would, so the responsibilities often fall back on you, even when you’re unwell. This contributes to significant “mom guilt,” and while mom communities exist, the parenting experiences of those without chronic illness differ greatly from my own.”
Addressing mental health struggles
The white paper reveals that more than half (52%) of people with IBD consider the impact of IBD on their mental well-being as negative. Other research studies have shown that individuals also experience depression and anxiety—with as many as 40% and 30%, respectively, experiencing these comorbidities, even while in remission.
The body image issues that stem from IBD such as weight loss, hair loss, steroid-related weight gain, ostomy bags, fistula, and other extraintestinal manifestations make life feel like a minefield. We are constantly up against the unpredictable nature of living with a disease that can rear its ugly head at any given moment. We are constantly forced to pivot and make decisions that often have a direct impact on our overall body image. I remember when I was in college (prior to my Crohn’s diagnosis) that I loved being on camera, working in TV news. Fast forward to five months post-graduation and three months post-diagnosis, and I was mortified anytime anyone tried to take a picture of me. Looking in a mirror was a stark reminder of what I was now and what I used to be.
These photos were taken 3 months apart. Pre-diagnosis and while on 22 pills a day.
Please know that if you struggle with this, you are not alone. As the white paper notes, “as many as 75% of women and 50% of men experience body image issues because of their IBD.”
Final thoughts
This white paper is a gift to the IBD community. As someone who was diagnosed with Crohn’s in 2005, I would have given anything to have a resource like this at my fingertips to validate my struggles and recognize my fears. We are at a pivotal point in patient advocacy and leadership where we can help shape the future of what it means to live with IBD and thrive despite the dark days.
Dr. Matthew Ciorba, MD, a gastroenterologist at Wash U in St. Louis says, “This work offers patient-identified, doctor-approved insight. It brings together perspectives that clinicians alone often cannot fully grasp. The document fills a unique niche in the IBD space. It bridges the lived experience of patients with the expertise of leading clinician advocates. There is truly nothing else quite like it.”
Our community, everyone from patients to caregivers, and medical providers, is so unique. For many of us, these connections and friendships (whether online or in person) have helped us to reclaim a sense of purpose within our disease journeys. My hope is that medical providers and GI psychologists use this research to empower and educate the community by providing this incredible research to patients and caregivers.
Check out the Executive Summary of the White Paper
It is an exciting and transformative time for the IBD community when it comes to family planning and pregnancy. For years, patients and providers faced uncertainty and conflicting guidance about everything from fertility to medication safety. Now, with the publication of the Global Consensus on IBD and Pregnancy, we finally have a unified, evidence-based roadmap created by leading experts worldwide.
This groundbreaking research, jointly published across multiple top journals, is more than just a collection of data—it’s a lifeline for patients, caregivers, and clinicians seeking clarity and confidence. And for the first time, that guidance comes to life through a series of 12 videos now available online. As the sole U.S. Patient Ambassador and Group Lead for patient advocates worldwide, I was honored to contribute not only to this historic project, but also to share my own journey in the video series—bringing the patient perspective directly into the global conversation.
Grateful for Dr. Uma Mahadevan and the entire team for their incredible work on the Global Consensus.
Check out the video series
Following the release of the research from the 2025 Global Consensus Conference on IBD, a series of 12 videos were also published on the PIANO (Pregnancy in IBD and Neonatal Outcomes website), featuring experts speaking on best practices, emerging data, and consensus statements.
Among those 12, my Patient Perspective video is unique. It’s the only video in the lineup where you hear firsthand experience from an IBD mom. During my unscripted 18-minute video, I share openly about the tough decisions I faced personally, the hopes and worries I encountered while bringing babies into this world, and what I want fellow patients and doctors to know. As an IBD mom of three kids (now ages 8, 6, and 4) who were all exposed in utero to Humira, I have a unique perspective to share.
I know what it’s like when you’re 32 weeks pregnant and have to do a biologic injection while you see your baby’s foot kicking at your belly. I know how stressful it is when you don’t know if you’re going to flare while pregnant or shortly thereafter. I know how complicated and overwhelming it can feel when you’re juggling a chronic illness along with pregnancy and motherhood.
Having a patient video placed alongside expert commentaries is a statement: our lived experience is essential to understanding how guidelines work in the real world. I hope my words leave you feeling seen and empowered.
Preconception Counseling and Contraception for Patients with IBD
The Patient Perspective
Why These Videos Matter
Each video is a piece of a bigger puzzle. Together they tell a story about where we are now, where we need to go, and how patients can be—and must be—central to that journey.
Bridging gaps between patient, clinician, and researcher. These videos are designed not just for patients, but for caregivers, physicians, policy makers, and anyone interested in improving IBD care. Seeing things through the patient lens can spark better communication, more empathic care, and guidelines that address what matters most.
Empowerment through shared experience. Whether it’s coping with symptoms, navigating treatment decisions, or facing uncertainty, this research will make you feel more confident in every decision you make along the way. Rather than feeling like there’s an overwhelming amount of gray area, you can see the roadmap of decision-making created from the Consensus that will help you each step of the way.
How to Watch & What To Do Next
Watch the videos: Listen firsthand and educate yourself. An educated patient is an empowered patient. It’s one thing to read a published medical study, it’s especially helpful to see these videos and watch the research come to life.
Join the conversation: Use these videos as conversation starters, take what you learned into clinic visits, have conversations with your partner/family/friends, or on social media. When you’re talking about family planning, make sure your GI and Maternal Fetal Medicine doctors are aware of the Global Consensus on IBD and Pregnancy to ensure they are up-to-date on the very latest research.
Join the PIANO study. This is a great way to become a citizen scientist and use your journey to motherhood as a way to pave the way for others. I participated in PIANO with my youngest child, and he will continue to be “followed” until age 18. It does my heart good to know we’re helping bridge the gaps in understanding so women with IBD now and in the future can feel more comfortable about staying on medication in pregnancy and during breastfeeding.
Too often, patient voices are an afterthought or an add-on. Being featured as an integral voice, not a sidebar, is a powerful shift. The fact the Global Consensus Conference team made such a point to incorporate patients like myself who are IBD moms, from around the world, goes to show just how inclusive and comprehensive this research is.
Final Thoughts
Living with IBD means navigating uncertainty, physical challenges, and emotional strength, but it also means being part of a community that continues to push boundaries in care. These videos highlight not only the science and data, but the lived realities that bring those numbers to life. Patient voices don’t just complement medical expertise, they help shape the future of care. By placing my perspective alongside global experts, the Consensus reminds us that guidelines are most powerful when they reflect both evidence and experience.
As an IBD mom, I think about what this progress means for my three children and for the next generation of families impacted by this disease. I volunteer my time and energy for these projects because they are at the heart of my patient advocacy and genuinely matter so much to me. The inclusion of patient voices today paves the way for a future where no one feels alone in their decisions about pregnancy and IBD. Together—patients, clinicians, and researchers are building a roadmap that will make the journey clearer, safer, and more hopeful for those who come after us.
For those living with Inflammatory Bowel Disease (IBD), the pursuit of better health often extends beyond medications and doctor visits. As someone who has lived with Crohn’s for more than 19 years, I’m aware that lifestyle plays a significant role in how we manage our disease. That being said—many people are drawn to popular health trends that promise improved digestion, immune support, and overall wellness. Everywhere we look we see posts on social media promising the next best thing for us. However, some of these trends, though appealing, may pose risks for those with sensitive digestive systems and compromised immune systems. This week on Lights, Camera, Crohn’s, we look at why it’s important to be wary of popular remedies and hear advice from Dr. Neilanjan Nandi, MD, FACG, AGAF, FACP, a well-respected gastroenterologist from Penn Medicine who specializes in Crohn’s disease and ulcerative colitis.
Holistic practices in the IBD community and beyond
There’s a lot of talk about holistic practices in the IBD community (Raw Milk, Amra/Bovine Colostrum, Digestive Enzymes, Athletic Greens, Homemade Kombucha)–the list goes on… while people may have “success” stories or swear by the benefits, it’s important to talk with your healthcare provider first.
“For patients on immunosuppressants, I would caution against consuming raw milk due to the concern for lack of pasteurization. There are often significant heavy bacterial loads and infectious organisms that may behave poorly in a patient’s digestive system and cause infections and subsequent flares too. Fermented products are certainly not contraindicated but I would caution patients in overdoing ‘too much’ and taking many different types of fermented products as it may cause excess gas,” says Dr. Nandi.
DeBalko Photo
He recommends people with IBD stick with one option and it if provides benefit then you can consider continuing.
“However, if a person sees no benefit after 6 weeks, then stop or change. Supplements like Athletic Greens may help patients get in more nutrients and fiber than they otherwise would, but this might also reflect that a patient is not getting enough nutritional balance, so they are favoring this product to achieve that need. Instead, I would rather encourage patients to work with a dietitian who can provide them with more insight and a balanced nutrition plan where they can get their vitamins and minerals in a whole food package rather than a processed formula. Also, there is no data to support that the product provides benefit in IBD and may be a costly option too,” he says.
Why the IBD community needs to be a bit more skeptical
Many supplements lack benefit and/or evidence to provide healing or relief. Many may be minimal risk and possible benefit but this risk to benefit ratio is quite low for the majority of such supplements.
“The greatest risk to the IBD patient is more financial as they are often costly and IBD patients generally have more than enough bills to manage. The other reason for concern is that some supplements may have a small risk for hepatotoxicity or other rare adverse events that may not be predictable. While herbal teas and plant-based products may appear safe, I always recommend informing your personal physician if starting a supplement and they can decide if a conservative approach to monitoring may be more appropriate,” explains Dr. Nandi.
A closer look at the “trends”
Raw Milk—While this is nutrient rich it doesn’t come without its risks. Unpasteurized milk has natural nutrients, probiotics, and enzymes that are believed to aid digestion and immunity. However, the lack of pasteurization also means that harmful bacteria like E. coli, Salmonella, and Listeria can be present, posing significant risks. For those with IBD, it’s common for us to have an immune system that is already compromised or a gut lining that is inflamed or damaged. This puts us at greater risk for bacterial infections. An infection from contaminated raw milk can lead to severe gastrointestinal symptoms, including diarrhea, cramping, and even serious complications that can exacerbate IBD flare-ups. While raw milk may seem appealing for its benefits, its risks far outweigh potential gains for those with IBD. Pasteurized milk or dairy alternatives are much safer options.
Bovine Colostrum—This is the first milk produced by cows after giving birth, it’s rich in antibodies, growth factors, and immune-boosting nutrients. It’s marketed as a supplement that can heal the gut, reduce inflammation, and improve immunity. Some studies suggest that colostrum may benefit those with gastrointestinal issues by promoting gut repair and reducing intestinal permeability. However, research on its effectiveness for IBD is limited, and not all individuals with Crohn’s or ulcerative colitis may respond well. There’s also the potential for allergic reactions, especially for those who are sensitive to dairy. Additionally, its effects on a highly inflamed or damaged gut are not well understood. While bovine colostrum shows potential for gut health, more research is needed to confirm its safety and efficacy in people with IBD. Always consult with a healthcare provider before adding it to your routine.
Digestive Enzymes—These are often recommended to support digestion, especially for those with conditions that impair enzyme production. They can help break down food, alleviate bloating, and promote nutrient absorption. For some people with IBD, especially those with enzyme deficiencies or malabsorption issues, these supplements may provide relief. However, not all enzyme formulations are created equal, and taking the wrong type or dose can lead to side effects like diarrhea, cramping, or worsen digestive symptoms. In addition, over-reliance on these supplements can mask underlying issues that need medical treatment. Digestive enzymes may offer benefits for those with IBD, but they should be used under the guidance of a healthcare professional to ensure they are appropriate for your specific needs.
Athletic Greens—This is a popular green superfood supplement packed with vitamins, minerals, probiotics, and other nutrients. It’s marketed to boost energy, support digestion, and fill nutrient gaps. While this may seem like a convenient way to enhance your diet, those with IBD should be cautious. First, the high fiber content and presence of various herbal extracts may not agree with everyone. Some ingredients could irritate the gut or trigger symptoms in sensitive individuals. Additionally, people with IBD often have individualized nutrient needs, and a one-size-fits-all supplement may not address these properly. For example, certain vitamins and minerals may be needed in specific dosages, which Athletic Greens may not provide. While Athletic Greens can seem like an easy nutritional boost, people with IBD should be cautious due to its fiber and herbal content, and instead, focus on personalized nutrition guided by a healthcare provider.
Homemade Kombucha—This is a fermented tea that’s often praised for its probiotic components, which are beneficial to support gut health. Many people with digestive issues turn to kombucha for its potential to improve digestion and balance gut bacteria. However, homemade kombucha can be unpredictable, with variable levels of fermentation and alcohol content. For those with IBD, who often have a more sensitive gut environment, kombucha’s acidity and potential for bacterial overgrowth or contamination can worsen symptoms like bloating, diarrhea, and cramping. There is also a risk of introducing harmful pathogens during the fermentation process if not done carefully. Store-bought kombucha from a reliable source is a safer option, but even then, it should be consumed in moderation by those with IBD.
Not all health influencers are created alike
When you feel desperate to try something that could improve your quality of life, you may be willing to do whatever it takes to feel better. But please remember that not all health influencers and people on social media are created alike and many have an agenda or profit motive.
“I have often found that the most ‘popular’ products are being promoted by influencers who participate in affiliate marketing and receive a financial incentive if their followers purchase with their referral code. One should always be weary of this and question the intent behind this approach. When in doubt, ask your doctor about the product and always do your own research, if possible,” Dr. Nandi advises.
What to know before you try
Gastroenterologists are trained to look for medication interactions and understand how to conduct literature searches in publication databases that are not always accessible to the public.
“Physicians are more up to date than most online influencers and can at least provide clinical support should a complication occur because of the supplement. The widespread use of electronic medical records for patients to converse with their medical team through secure messaging also provides patients an opportunity to ‘cut and paste’ weblinks to potential therapies and/or supplements to their physicians. This way the clinician can review the same page and provide a prompt medical opinion,” he says.
A look at the future
Dr. Nandi says some exciting supplements are on the market now. One in particular is called Qing Dai, which may be helpful in ulcerative colitis shown in small placebo-controlled studies. The pharmaceutical industry is elucidating this pathway, too.
“More data is required to study the effect in large scale trials. Even this exciting supplement may benefit from laboratory and clinical supervision to ensure patient safety,” says Dr. Nandi.
With the growing popularity of wellness trends, it’s easy to be tempted by promises of better health and healing. However, for those with IBD, not all health trends are created equal, and some may pose significant risks to gut health. It’s always crucial to approach new supplements or diets with caution, especially when you’re managing a complex condition like IBD.
I personally get approached all the time to try a new or different supplement and I’m always hesitant to rock the boat or put something into my body that I don’t know much about. Just as we are forced to advocate for ourselves in the healthcare system, we also need to be cognizant that unfortunately not everyone has our best interest in mind when it comes to making a profit from our pain. Just like diet and medication—there is not a one size fits all approach to wrangle IBD. Just because your healthy friend who added raw milk into her diet swears by the benefits, doesn’t mean it’s right for you. People may genuinely be trying to help you but stay informed and be cautious. This especially goes for newly diagnosed patients and caregivers who may be grabbing at straws trying to improve the reality of life with IBD.
Before trying any new health trend, it’s important to consult with your healthcare team, including your gastroenterologist and IBD nutritionist, to ensure the approach is safe and appropriate for your specific health needs. What works for the general population may not necessarily be beneficial—or even safe—for those living with IBD.
Chronic illness forces you to wear many hats and approach life in ways you never thought possible. One of those hats is being an investigative journalist or sleuth. Each time something starts going awry with our health we immediately start the mental gymnastics about what could be going on and if the symptoms are linked to our IBD.
I find that even though my Crohn’s has been in remission since August 2015, that the next flare always looms in a cloud of worry when I’m not feeling my best.
This past week I experienced this firsthand when my eyes both started twitching nonstop, along with headaches. I started thinking about what I could have done to trigger this bodily response. Was it Crohn’s related? Hormonal from breastfeeding weening? A mineral deficiency? A problem with my eyes or vision? Sleep deprivation or stress? The laundry list of possibilities and worries weighed heavily on me. After consulting with my GI, OB, and having an appointment with my eye doctor, I learned the eye twitching was a result of allergies. I now do eye drops once a day to help. It was such a relief to get an answer and physically be able to do something to make myself feel better.
When you notice an uptick in IBD symptoms or health issues in general how do you get to the bottom of what’s going on?
Here are my top tips for getting answers:
•Be proactive. Don’t let things fester and let your anxiety get the best of you.
•Take physical notes, not just mental ones. As the hours turn to days it can be difficult to remember when symptoms began and if they progressed. Keep a simple log of what is happening, how often, the severity, etc.
•Reach out to care providers early and often. Send a quick message on the patient portal informing your GI about what is going on. With IBD, I find it helpful to always loop my gastroenterologist in since so many issues are often related to Crohn’s.
•Be seen. If symptoms don’t resolve in 3-5 days, it’s a good idea to be seen in person or at least a telehealth appointment. You can always get on the books and cancel an appointment if you start to feel better.
•Try not to Google too much. While this is always tempting and can feel like a quick way of gaining understanding, it also can lead to going down a dangerous rabbit hole of what ifs that possibly aren’t even relevant.
•Listen to your gut. You know when something feels off. Don’t drown out how your body is speaking to you through symptoms.
•Practice mindfulness and calming exercises. It’s not unusual to feel up against a wall or like you’re taking two steps forward and one step back with chronic illness. Remember to breathe. Take a walk outside to clear your head. Do all you can to rest your mind from stresses that can trigger your IBD.
I get how exhausting it is to constantly feel at odds with your body and worry about what could be going on. Suffering in silence and not communicating health challenges only sets you back from feeling your best. Be mindful of how you feel each day and feel empowered by collaborating with your care team and giving them all the necessary intel to have the full picture when figuring out your health story past and present.
Stay tuned for a special discussion on IBDLyfe, Wednesday June 29, 2022, at 1 pm CT about “How to Be Your Own Best Advocate in a Provider Setting.” I’ll be speaking alongside fellow patient advocate, Tina Aswani Omprakash. Register here.
lights camera crohn's 