Category: Aging and IBD

At 14, Crohn’s Made Her Question Motherhood. At 22, She’s Studying Why.

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For women living with Crohn’s disease or ulcerative colitis, the question of whether to have children can carry a weight that goes far beyond the usual conversations about fertility and family planning.

Will my disease be controlled enough to have a healthy pregnancy? What happens if I flare while I’m pregnant? Will my medication affect my baby? What if I’m too sick to care for a child? What if breastfeeding means making another difficult medication decision? And the question that can be hardest to articulate: Will I be able to experience motherhood without IBD taking over the entire experience?

For Grace Hubbel, those questions aren’t simply academic. They are personal.

Diagnosed with Crohn’s disease at 14, Grace is now 22 and studying sociomedical sciences at the State University of New York at Geneseo. Her own experience with IBD and the stories she has heard from other women, led her to pursue an IRB-approved research study examining “The Impact of IBD on Decisions in Maternity and Emotional Wellbeing in Women.”

This week on Lights, Camera, Crohn’s a look at how her personal experience as a young woman with IBD inspired this incredible research and how you can get involved as a citizen scientist. Grace’s goal through her study, “The Impact of IBD on Decisions in Maternity and Emotional Wellbeing in Women” is to explore an area of IBD research that she believes has been overlooked: not simply what happens to a woman’s body during pregnancy, but what it feels like to make decisions about motherhood while living with an unpredictable chronic illness.

A Crohn’s diagnosis at 14

Grace grew up watching her older brother struggle with Crohn’s disease. He was diagnosed when he was starting college and nearly lost his life before his first surgery. When Grace began experiencing symptoms of her own at 14, she wasn’t completely surprised.

Her disease quickly became severe. She lost weight rapidly, her menstrual cycle stopped, and painful sores and ulcers made it difficult to swallow. She remembers feeling exhausted and unlike herself.

“I crawled into my mother’s bed once and told her it felt like I was disappearing with how I was losing pounds by the week,” Grace recalls.

At an age when many teenagers are focused on school, friends and figuring out who they are, Grace was learning a different vocabulary: tests, treatments, infusions, injections, and surgery.

“I was so young, I felt so different from my peers around me,” she says. “I spoke fluent in healthcare, in tests, I was forced to grow up so fast.”

Her Crohn’s journey has included steroids, infusions, injections, tests, a feeding tube, and surgery. At 22, Grace says she is still chasing total mucosal remission and continues to deal with hidden inflammation.

“Will I be able to become a mom someday?”

And almost immediately after her diagnosis, another question entered Grace’s mind.

Would she ever be able to become a mom?

Grace says motherhood was on her mind within months of being diagnosed.

Part of that fear came from watching someone she knew with Crohn’s experience a life-threatening postpartum flare and be unable to have more children. That story stayed with her and illustrates one of the most difficult aspects of IBD whether you’re a parent or not: uncertainty.

“The monstrous part about IBD is its uncertainty,” Grace says. “It never ceases to amaze me how for some individuals a round of medicine will get their body into remission, and another person will have unrelenting inflammation for years and years.”

For women with IBD, that uncertainty can intersect with some of life’s biggest decisions.

Grace knows this firsthand. Throughout various stages of her disease, she has wondered what a flare would look like during pregnancy or while caring for a young child.

What if severe diarrhea caused her to lose weight and made it difficult to get enough nutrients for a baby? What if medication affected her child’s immune system? What about breastfeeding and medication exposure?

Today, Grace takes Stelara, and she says she thinks about the fact that it can pass through breast milk. She has always dreamed of breastfeeding a baby but wonders how she would weigh that desire against the medical considerations.

And increasingly, another concern has emerged: the emotional experience of pregnancy itself.

“I worry most of all about having to work extra hard as a high-risk pregnancy and that I’d be obsessive about it all,” she says, “living outside of the special moments and experiences because of viewing it all through a clinical lens.”

That sentence captures something that statistics and clinical guidelines can’t always convey.

A pregnancy with IBD isn’t just a series of medical decisions. It can also be an emotional balancing act between wanting to enjoy a deeply meaningful life experience and being unable to completely turn off the part of your brain that is constantly monitoring your disease.

Seeing a gap in IBD research

As Grace learned more about IBD, she found comfort in understanding the disease from both scientific and sociological perspectives. She connected with other patients online and found women with IBD who had navigated motherhood and became role models for her.

That interest eventually led her to major in sociomedical sciences.

When it came time to develop an independent research project, she knew immediately that she wanted to study IBD and women’s health.

That project eventually grew into her current IRB-approved study. Grace noticed that while there is substantial scientific literature examining Crohn’s disease and ulcerative colitis during pregnancy and childbirth, there is far less research examining the qualitative experience of women living through motherhood with IBD.

In other words, researchers have studied many of the physical and medical questions. Grace wants to better understand the why behind women’s decisions, experiences, and emotions.

“This told me something was missing,” she says.

And the missing piece matters.

IBD is commonly diagnosed during reproductive years, meaning many women are forced to make decisions about fertility, pregnancy, breastfeeding, and family size while simultaneously navigating an unpredictable disease.

Could uncertainty itself be affecting women emotionally?

One of the findings that initially caught Grace’s attention was that women with IBD commonly report higher rates of psychological distress than men with IBD.

There are several explanations, but Grace wondered whether another factor deserved more attention.

Could the uncertainty surrounding fertility and motherhood contribute to that emotional burden?

“Could any of it have to do with how uncertain it can be for women to navigate a motherhood journey with an unpredictable illness such as IBD?” she asks.

That question became central to her research.

Rather than focusing solely on conception and pregnancy, Grace wants to understand the entire motherhood journey:

  • What does it mean to parent while living with IBD?
  • How do mothers explain their disease to their children?
  • Does becoming a parent change the way women cope with their illness?
  • How do women make decisions about breastfeeding or having additional children?
  • And perhaps most importantly, how do those decisions make women feel?

“These are the questions I want to explore,” Grace says.

Motherhood doesn’t end at delivery

One of the most compelling aspects of Grace’s research is her focus on what happens after pregnancy.

So much of the conversation around IBD and reproductive health centers on conception and pregnancy. But motherhood is a lifelong experience and IBD doesn’t disappear once a baby is born.

Grace says some of the women she has heard from have described waiting for their doctors to give them the “go-ahead” before trying to conceive.

Others have described delaying or avoiding medical care when they were very sick because they didn’t want to leave their children or frighten them.

But the stories aren’t exclusively difficult.

Grace says she has also heard about positive experiences, including mothers who have noticed their children developing deep empathy toward other people because they grew up with a mother living with IBD.

That is an important reminder: IBD can shape motherhood in challenging ways, but it can also shape families into beautiful ones. As an IBD mom of three kids (ages 9, 7, and 5) I can’t attest to this. Motherhood was the best decision I ever made and my kids are my constant motivation to push through, stay on top of managing my Crohn’s so I’m well for not only myself, but for them, and reminding me all my body is capable of despite my disease.

The decisions women make behind the scenes

One theme Grace has found particularly interesting is the way IBD can influence the timing of family planning. Some women wait for disease stability or medical approval before trying to conceive. Others make decisions about seeking medical care based on the needs of their children. These aren’t necessarily decisions that show up in a medical chart.

They’re the quiet calculations happening in the background of everyday life. And that’s exactly what Grace hopes her research will capture.

The study is designed to explore the experiences and emotional impacts behind these decisions, not simply whether a woman became pregnant or whether she experienced a flare. Because as we know, two women can have similar diagnoses and vastly different emotional experiences.

What Grace wants doctors to talk about earlier

Grace believes the conversation about fertility and family-building should begin much earlier in a woman’s IBD journey. She would like gastroenterologists to routinely ask young women at diagnosis whether they envision having children someday.

“I think it’s so important to get the conversation started and have it routine to discuss it,” she says.

Starting the conversation early can open the door to resources, questions, and appropriate reproductive counseling long before a woman is ready to have a baby. Grace also believes healthcare providers need to be honest about uncertainty.

“We need to be comfortable acknowledging what we don’t know,” she says, particularly when it comes to questions about the long-term effects of medications on children.

She also wants to see stronger communication between gastroenterologists and OB-GYNs.

She has heard women describe being confused about which physician to rely on during pregnancy and postpartum or receiving contradictory recommendations from their doctors.

“Greater communication between OB-GYN physicians, maternal fetal medicine doctors, and gastroenterologists on the topic of IBD and pregnancy is called for,” Grace says.

For patients, that kind of collaboration can mean the difference between feeling like they’re navigating pregnancy alone and feeling like they have a team.

Grace hopes her research changes the conversation

Grace hopes her research will expand how the IBD community thinks about women’s health. The physical side of IBD is important. But emotional wellbeing matters, too.

She points to the connection between psychological health and IBD outcomes, noting that emotional distress can influence disease activity. Her research suggests that the emotional stress of navigating motherhood alongside IBD may be one contributor to the psychological burden reported by women with the disease.

Her long-term goal is to highlight the need for more reproductive counseling and pregnancy programs specifically designed for women with IBD. Because women shouldn’t have to piece together this information on their own. And they shouldn’t have to wait until they’re ready to conceive to start asking questions.

“You will survive some of your biggest fears”

The most powerful part of Grace’s story isn’t the researcher speaking about the gaps in the literature. It’s the 14-year-old girl underneath it all.

If Grace could sit down with herself on the day she was diagnosed, she wouldn’t promise that IBD would become easy. Instead, she would tell her younger self that the disease would shape who she became and that some of that impact would become a source of purpose.

Her experiences would fuel her interest in healthcare and disability advocacy. She would meet healthcare workers who saw through her knowledgeable exterior and recognized the anxiety underneath. She would survive some of the things she feared most. And she would eventually find a partner who would make motherhood feel possible. But she’d also tell herself something many young people with chronic illness need to hear:

You don’t have to control everything.

“I’d tell her to enjoy being a young woman and let go of trying to control so much,” Grace says.

That’s easier said than done when your body has taught you from an early age that anything can change without warning. But that’s also why her message to other young women with IBD is so meaningful.

To the young woman with IBD dreaming about motherhood

Grace doesn’t know exactly what the future holds for her. She still has questions. She still has fears. She still lives with an unpredictable disease. But she isn’t letting uncertainty erase the possibility of motherhood. Her message to other young women with IBD is simple:

“Advocate for yourself and ask questions.”

She encourages women to establish an OB-GYN early and start talking about what pregnancy could look like in the future, even if motherhood is years away. And she wants women to know that they don’t have to abandon the dream simply because IBD may make the path more complicated.

“The reality is, it might be a little more sad and scary to manage,” Grace says. “But from what I’ve learned so far: no women have regretted the choice to pursue their dream, even if it looks different from what they expected.”

For a 22-year-old researcher who has spent much of her life learning to live with Crohn’s disease, Grace is asking a question that deserves far more attention:

What happens when we stop looking at motherhood with IBD solely through a medical lens and start listening to the women living it?

Her research is an important step toward answering it.

Interested in participating in Grace’s research?

Grace is currently seeking women with IBD who are at least 18 years old, English-speaking, and currently mothers living with Crohn’s disease or ulcerative colitis, either biologically or through adoption. A diagnosis before having a child is preferred.

Participants can complete an anonymous survey or contact Grace for a virtual interview. Participation is voluntary, and information provided will be kept confidential.

Join the study here!

From Memory to Meaning: How Mirae Is Changing the Way We Manage IBD

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This is a sponsored blog post; all thoughts and opinions are my own.

Living with Inflammatory Bowel Disease (IBD) means constantly reading the signals your body is sending you. What you eat, how you sleep, your stress level, your energy, and even the seemingly small changes in your routine can influence how you feel. After more than 21 years with Crohn’s disease, I’ve learned that this internal conversation never completely goes away, even during remission.

The challenge is that when symptoms become part of everyday life, gradual changes can be surprisingly difficult to recognize. Whether you’re newly diagnosed or have been living with IBD for decades, knowing your personal baseline can be one of the most valuable tools in managing your disease.

That’s where the Mirae Health app comes in. Rather than relying on memory or trying to piece together months of symptoms and lifestyle patterns before an appointment, Mirae helps patients see their own patterns and recognize when something starts to shift. This week on Lights, Camera, Crohn’s, we hear from Mirae’s founders about the inspiration behind the app and why understanding the connection between our daily lives and how we feel could change the way we approach IBD care.

Mirae’s founding designer, Sayoko Yoshida, chose to use a bear because they wanted something that felt:

  • Warm and inviting
  • Steady and dependable
  • Protective
  • Human and personal

The Mirae team specifically didn’t want the app to feel like a cold clinical dashboard or an overly cheerful “health app” mascot. They wanted the bear to represent a reassuring guide, something that helps people living with IBD understand what’s happening and feel supported as they navigate their care.

The inspiration behind Mirae

Mirae’s three founders, James Finucane, David Clifton, and Anuj Patel, have spent their careers using technology to improve access to healthcare. For Anuj, Mirae’s CEO, the mission is also personal. His father was a GI clinician in rural upstate New York, where he saw firsthand how critical and unequal access to specialty care can be, something Anuj recently wrote about on Mirae’s blog.

The team behind Mirae

“It was very clear how unique and how critical having high-quality specialty GI care in a rural market helped patients and how unequal access to care across the US is,” Anuj explains. “It was important that we use technology to help patients that are at the intersection of a chronic, acute and complex condition, of which Crohn’s and ulcerative colitis were the obvious fit.”

Mirae grew from a shared desire to use technology to solve two connected challenges: the burden patients carry to track and remember their disease, and the limited snapshot clinicians often have when making important care decisions.

The “Aha” Moment

The realization wasn’t about one patient story, but where the most valuable information lives. In IBD, important signals are often small and daily: a change in urgency, creeping fatigue, or escalated symptoms when eating certain foods.

I know when my symptoms increase, I can become hypervigilant, quickly jumping to the worst-case scenario. Much of that internal battle happens privately, between me and the bathroom walls or in conversations with my mom and husband.

Yet very little of it makes it into the medical record. Instead, months of experiences get distilled into a few sentences during a clinic visit, filtered through stress and imperfect memory.

“The gap in IBD care is not a lack of good doctors or good treatments. It is that the richest data about the disease is generated by patients outside of a lab, colonoscopy or doctor’s visit and then mostly lost,” says Anuj. “Building something to capture that gently and carry it into the clinic in a useful form felt like the most obvious unsolved problem in the field.”

Anuj Patel, co-founder and CEO of Mirae Health

The Missing Puzzle Piece in Patient Management

As Mirae’s creators examined the gaps in IBD care, they saw one major problem: there was no single place connecting the pieces.

“People track symptoms in a Notes app, photos of meals on their phone, questions on scraps of paper, and half of it in their head. Most existing tools were built like diaries. They demand daily discipline, which is exactly what you do not have during a flare, so people abandon them when things get hard, when the data matters most. Most importantly, nothing connected the tracking to actual care,” says Anuj.

You can track symptoms for a year, but if your gastroenterologist never sees that information, it’s pointless. And when living with a chronic illness already feels like a full-time job, adding more work to disease management is the last thing those with IBD need.

Mirae aims to change that.

“We wanted to make day-to-day management delightful and to use the AI models developed by our team to better understand disease progression and connect that information to clinicians that can make more informed decisions on a patient’s care.”

Answering the Call as Patients Feel Overwhelmed and Unheard

Feeling unheard usually isn’t about clinicians not caring. It’s about trying to fit months of lived experience into a 15-minute appointment, with the patient expected to remember and explain it all on the spot. That’s an unfair expectation of someone who is unwell.

“Mirae is designed to carry that burden instead. The app does the organizing, the remembering, and the summarizing, so the patient does not have to perform their own case in the room,” says Anuj. “We kept the language plain, the daily effort small, and made forgetting or skipping days completely fine. The goal is that when you walk into a doctor’s visit, your patient experience is clearly summarized for a clinician, allowing the visit to be more humane and genuine, while helping clinicians make more informed treatment decisions.”

At home, Mirae is designed to make living with IBD feel a little lighter. You can think of it as a quiet companion while navigating an often-isolating disease.

“In the clinic, we want people to feel prepared and taken seriously. There is a real difference between walking in trying to remember everything and walking in with a clear summary of the last three months in your hand. One feels like being tested. The other feels like being a partner in your own care,” says Anuj.

A Step Toward Personalized Medicine and Treatment Options

Personalized medicine in IBD starts with recognizing that Crohn’s disease and ulcerative colitis are not one-size-fits-all. Mirae’s technology looks for patterns that can help identify patient subgroups and better understand how individuals respond to treatment.

“Knowing how patients in each subgroup respond to treatment or how symptoms manifest can help a care team recognize earlier when someone may need attention, rather than waiting for the next scheduled visit,” explains Anuj. “It can also make treatment discussions more grounded, starting with months of real-world data and experience that our tools can translate into clinical insight, rather than a few minutes of recollection.”

Mirae builds that picture from what patients choose to share over time: symptoms such as pain, urgency, bowel habits, fatigue, and energy; medications and how they’re tolerating them; lifestyle factors like sleep, food and activity; and free-form notes and questions captured in the moment.

The app looks for what has changed and what you’ve flagged. Mirae suggests; you decide. The goal is to make sure the things that matter most to you are at the center of the conversation. Mirae supports clinical judgment; it doesn’t replace it.

The App Is Free—How?

Living with IBD is expensive. Between medications, procedures, time off work, and everything in between, patients already carry a significant financial burden. Mirae’s creators didn’t want to add a subscription fee or rely on ads that could compromise the trust they’re building with patients.

“At a high level, our model works with the healthcare system for payment when patients enter remission sooner. Health systems and care programs benefit when patients arrive prepared, problems are caught earlier, and care between visits is more visible. All of this can help patients get on the right medication sooner while reducing future medical costs, such as surgery or ER visits,” says Anuj.

Making Patients Active Participants in Their Care

The biggest barrier to participating in our own care isn’t motivation, it’s preparation and organization. Too often, we leave appointments remembering the question we forgot to ask or downplaying what daily life with IBD feels like because suffering in silence has become our normal.

“Throughout the weeks between visits, the app makes it easy to capture questions and concerns as they come up, instead of hoping to remember them later. Before an appointment, it helps pull everything together into pre-visit notes: what has changed, what’s worrying you, what you want to ask, and what you want out of the visit,” explains Anuj.

When you arrive with that information in hand, the dynamic shifts. You’re no longer a passive recipient. You have an agenda backed by your own experience. That’s active participation in your care.

The Power of Pre-Visit Notes

One of my favorite Mirae features is the pre-visit process. You can capture observations about your health, answer targeted questions, and, most importantly, identify your biggest concerns going into the appointment.

Mirae then turns that information into a plain-language summary: what has changed, what has stayed stable, what’s worrying you, and the questions you want to address.

“You can edit anything, remove what doesn’t matter to you, and rank what you most want to discuss. You stay in control of what is shared. When you’re done, you have a short, clear document you can bring into the room or share ahead of the visit,” says Anuj.

An educated patient is an empowered patient. Taking a few minutes to prepare can help both you and your provider make the most of limited appointment time, something especially valuable when we’re juggling multiple specialists.

“The core principle is to change from your own baseline. A symptom level that is normal for one person may be a red flag for another, so relevance is always personal,” says Anuj. “The app looks at what is new since the last visit, what has been trending in either direction, or what has been persistent. Mirae also gives weight to things you have marked as important, medication changes and how they have gone, and anything that has come up repeatedly in your notes. Repetition is a strong signal that something deserves airtime.”

Input from Medical Providers and IBD Patients

Mirae was shaped with input from IBD clinicians, including advisors at Oxford and across the United States.

A consistent theme was where the appointment begins. Too often, the first minutes are spent reconstructing months of symptoms from memory. With organized pre-visit notes, that work is done, allowing more time for meaningful discussion, decisions, and care planning.

“Clinicians have also been clear with us about what they do not want: another screen, more unfiltered data, or anything that adds time. That feedback pushed us to keep the clinician-facing side short and structured. As the pilot progresses, we will let the results speak rather than getting ahead of them,” explains Anuj.

Dr. Simon Travis, Professor of Clinical Gastroenterology at the University of Oxford, sees Mirae as ‘stepping stones across a river, sometimes widely apart.’

He says, “Mirae acts as a bridge. It provides depth, credible advice, links to the evidence, informed comment, and guidance. It complements specialist advice by addressing complex factors such as fatigue or diet in detail, way beyond what is possible to cover during a consultation.”

Dr. Alissa Walsh, a Gastroenterologist at the Oxford University Hospitals NHS Trust and Nuffield Health, The Manor Hospital, Oxford, agreed to support Mirae because she believes people living with IBD deserve to be active partners in their own care, not passive recipients to it.

“Too often patients feel they’re navigating this condition alone, without the information or confidence to ask the right questions,” she says. “Mirae’s work has the potential to change that — empowering patients at every stage of their journey and, ultimately, improving the quality of care they receive.”

As an IBD patient advocate, I’m one of many who have helped to provide feedback and guidance through the app development process. Having patient and provider input is paramount to making sure the app works for us in real time. Multiple members of the Mirae team also have IBD themselves.

“It is hard to advocate for yourself on subjective terms such as “I feel like things have been worse lately.” It is much easier when you can say things have been different for six weeks, here is the pattern, and here is what I would like us to consider,” says Anuj. “When patients see their experience taken seriously, written down, reflected back, and brought into the clinical conversation, it reinforces that their observations matter.”

What Sets Mirae Apart from Other IBD Apps?

Most health apps are islands: you track diligently, but the information rarely goes anywhere. Mirae aims to close that gap in three ways:

  • Connected to clinical care. Mirae is designed to work with a patient’s existing care team. The information gathered is intended to inform care rather than sit in a silo. Its first deployment is within a large academic medical center.
  • Built specifically for IBD. This isn’t a general wellness app with an IBD mode. Mirae was incubated at Oxford’s Computational Health Informatics Lab and shaped by IBD specialists and patients.
  • Designed for both patients and clinicians. Rather than making patients pay for premium features or clinicians pay costly software fees, Mirae is built to serve both sides of the care relationship.

The Goal Five Years from Now

Looking ahead, Mirae’s creators hope the platform will build something that doesn’t currently exist at scale: a rich repository of patient-reported symptoms connected to clinical data that could improve treatment recommendations and eventually inform drug discovery. Longer term, they envision expanding beyond IBD to other autoimmune conditions, where many of the same challenges exist.

“The goal for us is in five years, is that “Maya”, a newly diagnosed Crohn’s patient, is able to use our platform to have a trusted companion that helps her understand her condition and, alongside her gastroenterologist, precisely identify the specific type of Crohn’s she has, find the best therapy for that type, and get on her way to remission and stay there.”

For Mirae’s founders, success means making that experience the norm, so Crohn’s becomes one part of Maya’s identity, not something that consumes her life.

Final Thoughts

Mirae’s goal is to end the era of memory-based appointments where patients carry months of their lives in their heads, then try to summarize it all under pressure. For gastroenterologists, it’s a similar challenge: extracting that information while balancing an enormous amount of clinical knowledge.

Mirae is designed to fit into patients’ lives, especially during the hard weeks, helping turn real observations into a clearer picture of their health and a more personalized care plan.

“We hope Mirae shifts some weight off patients’ shoulders. Managing IBD will never be effortless, but the administrative and cognitive load, the tracking, remembering, and preparing is something technology can genuinely carry. If patients spend less energy managing their disease and more living their lives, we have done our job.”

Download Mirae for FREE! Learn more about Mirae here.

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A New Study Suggests Crohn’s Disease May Be Detectable Years Before Symptoms Begin

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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.

Additional Research

Crohn’s Disease May Be Detectable Years Before Symptoms

Familial and ethnic risk in inflammatory bowel disease – PMC

Targeting Disease Prediction and Prevention: The New Frontier in IBD

Deciphering the different phases of preclinical inflammatory bowel disease | Nature Reviews Gastroenterology & Hepatology

The GEM Project – The GEM Project – Crohn’s and Colitis Canada

Stronger from the Inside Out: The Role of Nutrition in Gut, Muscle, and Bone Health for Women with IBD

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At the inaugural Cedars-Sinai IBD and Women’s Health Conference, experts came together to spotlight the unique challenges women face at the intersection of inflammatory bowel disease (IBD) and women’s health. Co-directed by Dr. Puja Khanna, Clinical Director of the IBD Women’s Health Program, and Dr. Maria Abreu, Executive Director of the IBD Institute, the event featured a two-part format: clinical updates for providers and education for patients and caregivers. Topics ranged from fertility and pregnancy to nutrition and mental health.

One of the featured speakers was Neha D. Shah, MPH, RD, CNSC, CHES, Senior Dietitian at the Colitis and Crohn’s Disease Center at UCSF and founder of Neha Shah Nutrition LLC, a private practice specializing in nutrition care for patients with IBD. Her session focused on nutrition updates and strategies to support gut, muscle, and bone health in women with IBD. This week on Lights, Camera, Crohn’s I spoke with Neha, and she zeroed in on something every woman with IBD should care about: how to use nutrition to protect our gut, muscle, and bone health.

Why Nutrition Matters Beyond the Gut

Whether you live with IBD or care for patients, you know that IBD affects much more than the gut. Fatigue, abdominal pain, and debilitating flares that blindside us can make it feel like our whole body is affected.  While we know this, it can be complicated to know how to address these specific challenges.

“Women with IBD face a unique set of challenges,” Neha explains. “Poor absorption can contribute to ongoing symptoms, muscle loss, and bone loss. Hormonal shifts, whether from PMS, pregnancy, or perimenopause add yet another layer, often making symptoms unpredictable.”

Her goal? To give women practical, evidence-based strategies they can use to better support their health, both now and as their bodies change through different life stages. As a woman who was diagnosed with Crohn’s disease at age 21, my questions and focus have shifted now that I’m 42 and my family is complete.

“Many women don’t just experience flare-ups; they live with changes in their body that evolve throughout life, impacting daily routines, work, and overall quality of life. In my presentation, I aimed to highlight both the latest updates and practical, whole-food strategies that women can use to better support their health.”

Key Takeaways from Neha’s Presentation

Gut Health

IBD symptoms often overlap with PMS and endometriosis: fatigue, abdominal pain, diarrhea, bloating, and constipation. If you’ve noticed an uptick in your IBD symptoms right around your period, you are not imagining it.

When combined, these conditions can intensify, highlighting the need for careful monitoring and proactive management.

  • Dietary Patterns: A Mediterranean-style diet rich in fruits, vegetables, whole grains, legumes, nuts, and olive oil may reduce the risk of IBD flares and ease painful bowel symptoms in women with endometriosis.
  • Fiber Matters: Soluble fiber (oats, fruit) can slow diarrhea, insoluble fiber (leafy greens, brown rice) can help constipation, and less fermentable fibers may reduce gas and bloating. Adjusting textures, like blending or mashing can improve tolerance, especially for those with strictures.

Neha notes that further studies are needed here and she’s hopeful we’ll have even more intel in the future.

Muscle Health

Sarcopenia (loss of muscle mass and strength) is more common in IBD due to chronic inflammation and nutrient malabsorption. Hormonal changes and aging further increase the risk.

  • Nutrition + Activity: Adequate protein intake (1.2–1.5 g/kg per day for many with IBD) and resistance training are key. Individual requirements sometimes are even higher.
  • Gut-Muscle Axis: Emerging research suggests fiber may support muscle health by fueling beneficial gut bacteria. The National Health and Nutrition Examination Survey (NHANES) 2011–2018 survey data from 6,000 healthy adults (without IBD) showed each 5 g increase in fiber intake was associated with higher lean mass and grip strength, possibly through increased short-chain fatty acid production. Fiber’s role in IBD and sarcopenia remains understudied.
  • Practical Tip: Aim for 15–20 grams of protein per meal, combining both animal (e.g., fish) and plant-based sources (e.g., lentils, tofu, nut butter). People with IBD generally have higher protein needs, which can vary depending on weight, activity level, and disease state.

“Evidence in women with IBD is limited. One small case-control study of 23 women with UC versus age- and BMI-matched controls found reduced quadriceps strength, slower sit-to-stand and gait speed, and lower physical activity, though handgrip strength was preserved, says Neha. “Early assessment of nutrition, activity, and lower limb function is crucial. No IBD-specific sarcopenia guidelines exist, but recommendations from the International Clinical Practice Guidelines for Sarcopenia by the annual International Conference on Frailty and Sarcopenia Research by centers at John Hopkins University include increasing protein/calorie intake and resistance training.”  

Bone Health

Women with IBD are at higher risk for osteoporosis and osteopenia, especially during perimenopause and menopause. The gut-bone axis reflecting the connection between gut microbes and bone health may play a role. Calcium and vitamin D requirements in individuals with IBD depend on factors such as disease activity, malabsorption risk, corticosteroid use, and deficiency status.

If you haven’t done so already, talk with your care team about getting a DXA scan (bone density scan) so you have a baseline. The earlier in your IBD journey, the better. Bone scans are non-invasive, and probably the easiest test we undergo. You wear your street clothes, lie down on a table, and it’s a quick and painless experience. I have a bone health doctor at Wash U (yes, that’s her title!), who focuses specifically on this after a bone scan in 2022 showed signs of osteopenia and osteoporosis in my 30s. Be mindful on the timing—do not get a bone scan while pregnant or breastfeeding as this can skew the results. If you’re nursing, it’s ideal to give your body at least 6 months after weaning before you get a bone scan, so your bone health is accurate.

  • Calcium & Vitamin D: People with IBD often under consume these nutrients, particularly when dairy is restricted. For most, calcium needs range from 1,000–1,500 mg/day, with vitamin D at 1,500–2,000 IU/day. In a cross-sectional study of 65 IBD outpatients, nearly two-thirds reported restricting dairy, leading to an average calcium intake of only 343 mg/day—well below the daily recommendation.
  • Practical Tip: For those who tolerate dairy, start small—a dollop of yogurt, a sprinkle of cheese, or lactose-free milk. Non-dairy sources and supplements can help fill the gaps. When you get labs, you can talk with your GI about looking at your vitamin D level to see if it is adequate or not. I was on 50,000 IU once a week for many years. Now, I take 2,000 IU a day. So, this figure does fluctuate and it can improve.

Nutrition Across Life Stages

Neha stresses the importance of tailoring nutrition guidance to a woman’s age and life stage:

  • Young women (around age 20): Focus on building peak bone mass, meeting calcium and vitamin D needs, and making realistic choices in dining halls or dorms. Portable, nutrient-dense snacks like yogurt, nut butter, or fortified bars can make a difference.
  • Premenopausal women: Greater emphasis on long-term bone and muscle health, distributing protein intake evenly throughout the day, and pairing nutrition with weight-bearing activity to maintain strength. Neha’s focus shifts more toward optimizing long-term bone health, since risk factors may be increasing.

“Across both age groups, I prioritize adequate protein and fiber in forms that are well tolerated to help manage symptoms and optimize muscle mass, while also monitoring common nutrient deficiencies such as iron, vitamin B12, and folate,” explains Neha.

The Role of an IBD-Specialized Dietitian

A dietitian specializing in IBD plays a vital role in helping patients understand how inflammation and treatments can affect digestion, absorption, and food tolerance.

“We stay up to date with the latest evidence and tailor nutrition strategies to each stage of the disease—whether someone is newly diagnosed, recovering from surgery, or in remission. For example, we help patients identify which types and textures of fiber are best tolerated, since not all foods impact the gut the same way,” says Neha. “We also emphasize balanced protein intake from both animal and plant sources to protect muscle mass, and ensure nutrients for bone health, like calcium and vitamin D are optimized from both dairy and non-dairy options. Just as importantly, we integrate these strategies into each patient’s lifestyle, culture, and social settings so that recommendations are practical, sustainable, and supportive of long-term quality of life.”

By seeking out a registered dietitian who specializes in IBD you are truly targeting your treatment and receiving personalized care that helps you cut through the confusion, especially if you are newly diagnosed. Their strategies are not just good on paper; they work at your kitchen table and in your daily routine to help you get your health and well-being back under control.

Accessing a dietitian may depend on the healthcare system. Patients can ask their gastroenterologist for a referral, or they may be able to connect with an IBD-specialized dietitian through private practice. Many registered IBD dietitians also do virtual video calls, so it’s not necessary for in-person, local appointments. The Crohn’s & Colitis Foundation provides resources to help connect patients with dietitians who have expertise in IBD.

Final Thoughts

Nutrition in IBD isn’t one-size-fits-all. It requires careful personalization and an understanding of the unique challenges women face throughout their lives. By focusing on gut, muscle, and bone health, women with IBD can better protect their bodies today while laying the foundation for stronger health in the future. It’s not just about flares and managing our IBD, it’s about how our bodies uniquely absorb nutrients, how inflammation affects our strength, and how hormonal changes shift the way we fell over time. Muscle weakness, bone loss, and unpredictable symptoms tied to our menstrual cycles can be a lot, but small, realistic changes in how we eat and move our bodies can make a lasting difference.

Click here to learn more about Neha Shah’s work.

Connect with Neha on Instagram: @nehagastrord

Colonoscopy Prep Hacks You’ll Actually Want to Try: Tips from the IBD Community

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Whether you’ve experienced one colonoscopy or 20, you know the process is far from enjoyable. This past week while scrolling through Instagram I came across a story an IBD caregiver posted as her young daughter prepped for her scope. During the video she explained how her husband rolls dice, and whatever number it lands on is how many sips their daughter has to take of prep. I was amazed at this brilliant trick to ease the struggle of getting the prep down, and it inspired me to dig a little deeper and ask the IBD community what their “tips and tricks” are.

This week on Lights, Camera, Crohn’s read firsthand advice from caregivers and patients of all ages. My hope is that you find comfort and maybe even a new idea or two to make your next prep a little less stressful.

Firsthand advice for pediatric IBD caregivers

Mara’s daughter has IBD and has already been through eight colonoscopies in just five years. She says the dice game was a huge success for their family the first time around:

“She was at the perfect age for a little competition as motivation with a reward at the end for the winner…of course she always won. It was honestly so easy to prep her I was shocked.”

However, being NPO (derived from the Latin saying ‘nil per os’ or nothing by mouth/no food or drink) after midnight was NOT easy.

“There were lots of tears and anger directed at us. We bought her a special blanket and stuffed animal, which helped diffuse some of that anger.”

As many caregivers know, every prep is different. Mara recalls their second scope being much more difficult, requiring hospitalization and an NG tube after her daughter couldn’t keep the prep down. Now, they focus on giving their daughter as much autonomy as possible, letting her choose flavors, snacks, and activities.

“On prep days or days, she must be NPO, dad and I also follow that diet. It gives her a sense of belonging and that we are struggling right alongside her. We’ve done it for all eight scopes, and we will continue to do it if she needs us to.”

Over time, Mara says they let their daughter lead as much as they can. They give her a “yes” day.

“Whatever she wants (within reason) to eat or drink. Gummy bears, sure. Popsicles, sure. Want to try to mix three different Gatorades? Why not? She wants to watch TV while she preps or play hockey, absolutely.”

Emily’s Family
Emily has three daughters with IBD (now ages 9, 12, and 15) who’ve been doing preps for over a decade. Their youngest had to prep for a scope when she was only 21 months old. Their top tips include:

  • Only prepare 8oz of the drinking mixture at a time. With MiraLAX prep, we let them pick a new flavor to mix each 8oz.
  • Think outside the box with the liquids for MiraLAX! One preferred water once! (With other electrolyte drinks that day.) One daughter does her whole prep with tea and chicken broth. (Add MiraLAX after the liquid is warmed.)
  • Use distraction!! This is our biggest piece of advice. We surprise the girls with a new activity the day of prep. They know there will be something fun to do – just not what it is. We have gotten Lego sets, multi-step craft projects, etc. We pick something that we can partition up and give them one part at a time in celebration for ounces drunk!
  • Keep them active. We have found that the girls tolerate the large amounts of liquids better if they get up and get moving! In the warmer months, they go walk laps around the driveway between cups of the prep.
  • Pick the “fun” liquids together ahead of prep day. Since they normally cannot have juice or soda, they pick out a few drinks that they are excited to have. This helps them to drink more, once the MiraLAX prep is complete.
  •  I set timers for myself for the day of prep for every 10 mins or so. Just to check in on their drinking. It’s easy to lose track of time and accidentally go 30 mins (or more!) without drinking.
  • Pack a bag of supplies for the scope day. We always take extra clothes and baby wipes for any accidents. Games/books/crafts are great to keep the girls distracted during the wait before their procedure time. We take some water/light snacks for afterwards. (Check with your providers to see what/when your child can eat afterwards.) Chapstick is always requested by mine now too.
  • Remember that you can speak up and (nicely!) ask for what your child needs to make them comfortable. For example, at our hospital, the kids usually get their IV’s after they are sedated with some gases through their breathing mask. This is great to avoid needle anxiety for many kids. However, mine have taken a dislike to the masks and the smell of the gas. Since they get regular med infusions, they prefer to get their IV’s back in the holding area and then use the IV for their sedation to sleep. While not the normal procedure, the anesthesiologists and nurses have kindly worked with us to do it the way my kids prefer.

Cindy’s Perspective
Cindy, mom to a teenage daughter with Crohn’s disease, says scheduling scopes early in the day is key. Even if you have a teen who likes to sleep in, sleeping in is worth nothing if you already feel like crud due to the prep. She emphasizes advocating during IV placement and following your gut as a caregiver:

“A parent’s intuition of how much is too much comes into play, and you’ve got to listen to that voice. Tell the nurse you (parent and child) did your best to complete as much of the prep as possible. If you can’t finish it to a T, they can still make it work. They know they are working with a child. If they are having trouble placing an IV, advocate for your kid. Give them two tries and then request another person to try. We’re still traumatized from watching them work for 10 minutes to get an IV into my dehydrated and scared 9-year-old, and I think that trauma will live with us both forever.”

She also believes in being honest with your child without over-preparing. Start the conversations when it’s time, but don’t talk about it for days or even hours beforehand.

“This is not going to be fun, and it won’t feel good. But I know you can do it and we are going to do it together because I will be beside you every step of the way. Here are the steps we will take and outline them in age-appropriate detail. Let’s think about how amazing this is going to be once it’s done! This is our focus for the next 24 hours… that moment when it’s done… that will be the best! As soon as you are done at XYZ time tomorrow, we can celebrate and go back to normal life, and you can eat whatever you want.”

Additional feedback for pediatric patients

“For pediatric prep, popsicles are necessary. Blue popsicles allow kids to “poop blue,” which many like. The Gatorade with the MiraLAX is the easiest for them to get down. We tried magnesium citrate once and it was a disaster. Gatorade is where it’s at. Also, we make it a party. Popsicle party. Jokes and TV while pooping. Anything to keep the mood light.”

“Turn the ordeal into a scavenger hunt by completing parts of the prep with small stickers to earn up to something whether it be completing a picture or something to distract when prep is working.”

“My daughter’s first prep at home didn’t go well, but prep while in-patient thru NG tube really worked.”

“If the hospital or your GI team has a Child Life specialist, they can send prep books to families ahead of time so they can help prepare kids for what to expect the day of the procedure.”

“Bribes! Lots of bribes! New toys or games. Legos keep little ones busy. Family doesn’t eat in front of them. Lots of snuggles. Clear your schedule to spend time with them. For young kids, put all food out of reach or lock the pantry so a hungry little one doesn’t get into something they can’t have and make you have to cancel the procedure, which is always my fear!”

“I have a prep approved Starbucks order—Mango Dragonfruit refresher, Venti, no ice, no Dragonfruit fruit inclusions, peach juice blend, in my personal cup … I like to line up cups so I can visually see how much is left and removing one feels like an accomplishment. A seasonal suggestion is using an advent calendar and dividing prep by 24 and opening one door after each one…just make sure the prizes are not food!”

“Arts and craft activities and projects can be a good distraction. Recently gave a sensory art bin to a VEO-IBD patient through their first scope as a kid it helped me to have new things to do.”

“My mom fasted with me when I was doing the prep as a kid! My tips now as a mom myself are to make Jello without Red 40. Ramen seasoning dissolved in water tasted way better than broth to me as a kid…I know that’s not good for you. I would make it a fun and relaxing day, so your kiddo is distracted. I would recommend not watching TV or YouTube because there are so many advertisements for food everywhere and it didn’t help distract me much. I advise having a movie marathon instead!”

“We didn’t eat out much when I was a kid, so eating out with my parents only was a big treat for me to look forward to after starving the day before! Back in the day, GIs used to do a combination of drinkable prep and suppositories for pediatric patients, and I’m glad my mom did the suppositories for me because it was not something else you had to drink. Ask pediatric GIs about low consumption prep so your child doesn’t throw up.”

“When I was a pediatric patient, my mom took me to the store to pick out different drinks for the mix, Jello flavors, etc.… which would make it fun picking it out myself and this also gave me a sense of control in a very out my control situation. My mom always fasted with me, which I appreciated not feeling alone in it. I was also able to pick the restaurant to go to after for something to look forward to!”

“Have your child drink their prep in a fun container., a Disney theme with a silly straw. For adults, use a wine glass or fun mug. Cheers!”

“My 12-year-old just had their first colonoscopy. As a Crohn’s patient myself, I have done one every other year for 25 years and it was hard to watch him go through it. He was tougher than me. The hardest part was him not eating! He had to do a full two days of clears only—per our doctor’s recommendation. That’s my hack as an adult, too. I start taking a Dulcolax dose and not eating a day or two earlier than recommended. You only have to drink the drink until it’s clear in the toilet. The milder/longer prep is easier on me and saves me drinking half the magnesium citrate drink.”

“My daughter couldn’t get any of the prep down at age 16 and by this summer, at age 19, she felt ready. This time we tried over the counter prep of MiraLAX and Dulcolax. The doctor said if she did it this way, she would need to fast for 48 hours instead of 24. She was fine with that. She started taking a couple of Dulcolax tablets at 5 pm the night before. Then, we put half a bottle of MiraLAX into Sprite. She drank a cup every 10 minutes until it was gone. We did the same thing a few hours later. She was clear before going to bed at night. It was easy and stress-free for her.”

“My parents would set me up with my iPad for movies, a desk chair, and a blanket in the bathroom so I could go back and forth from the toilet easier.”

“Make MiraLAX with white grape juice instead of Gatorade! Drink with a fun straw so you can put it on the back of your tongue and taste less. Put on headphones with loud music to distract your sense from the taste so you can drink the prep faster.”

“I confirmed with my child’s GI that colorless cotton candy is a clear liquid! Obviously in moderation, but this could be super helpful for kids and adults who need a different texture than liquid or gelatin.”

Prep Hacks for Adult Patients

Our IBD family had plenty of creative hacks for adults, too:

“The MiraLAX + Dulcolax prep hands down!! I’ve tried them all, and it’s tasteless and easiest.”

“Lemonheads or lemon jolly ranchers RIGHT after you get done drinking a dose!”

“Gummy bears and lifesavers! I love having stuff to chew. I also had pickle juice shooters, which gave me some salty/sour taste to balance all the sweet stuff. I also keep my schedule open for the remainder of the day and allow myself to relax.”

“I put my Suprep in the fridge (even though it says not to) and it makes it SUBSTANTIALLY easier to drink (and doesn’t seem to make it less effective in any way). I also buy myself a new book to read or save a special TV show episode, so I have something to look forward to when I’m drinking prep at 2 in the morning. Colonoscopies are miserable and until they figure out how to make them a nicer experience, it’s great to team together to gather the best tips.”

“Clear Gummy Bears!! This keeps it fun for all ages! Here’s a recipe!

“Drinking chicken broth throughout the day. This gives energy and takes away the bad taste of the prep drink. As a kid, my sister used to make a colonoscopy prep kit. Every 8 oz. I drank; there would be a little gift or activity to do. For example, after the first 8 oz., I got a nice bottle to drink the rest from. The next thing was a Lego kit or a paint by number.”

“I begin my prep four hours ahead of their suggested time, so I can sleep through the entire night. Getting up in the middle of the night, especially for children to complete round two of the prep is just borderline inhumane. What a nightmare. The catch is waking up and hydrating with enough water before the anesthesia cut-off which requires not to drink anything 2 hours before the procedure.”

“Wet wipes and diaper cream are super helpful!”

“A lot more MiraLAX than the prescription prep. And gummy bears (except red ones) are a gamechanger. They let you feel like you’re eating, but they liquify in your gut.”

“Rotate flavors and get some protein through broths. Have broth, then 2 hours later do Jello or change the texture and taste, then 2 hours later do broth and rotate.”

“Strain chicken noodle soup to just have the clear broth, it has more sodium.”

“Avoid eating vegetables/fruits/seeds three days before. Taking preps that you can take with a glass of water and then drink two liters of tea or water.”

“My son, Andrew, has autism and Crohn’s disease. When he has to do colonoscopy prep, he likes to listen to Disney music and use a timer. Andrew is almost 30 years old and has been having to do colonoscopies since he was 17. This past year, for the first time, he did the pill prep and loved it. He used a timer to tell him when to take the next pill. Andrew told me he will never go back to liquid prep. Pill prep was so much easier for him, especially with his sensory issues.”

“Take notes on all preps you’ve been assigned and take notes and photos of what it felt like. I found one that was less painful for me, and I always request it. I also alternate sips out of a straw with apple juice. I drink the prep in my kitchen, near a bathroom, and watch TikTok’s while drinking to distract myself.”

“I only eat soft foods 2-3 days before, make sure to hydrate, and follow the instructions they give about not eating things like seeds or nuts a week before.”

“Have a bidet and diaper cream ready.”

“Desitin, Gatorade that is the Frost Glacier Cherry flavor (not red) frozen or really cold to help me stay hydrated.”

“Make freezer pops out of the Gatorade prep mix.”

“For me—finding fun drinks, whether a tea at Starbucks or stocking up at the grocery store, really makes it feel less horrible. I started this as a teenager. I make a list of movies or shows I want to binge. If you’re comfortable with it, have a friend there to distract you—at 15 years old, my boyfriend stayed with me all day for my surgery prep which was the same as a colonoscopy and we watched movies and he distracted me/made me laugh and at times I forgot what was going on!.”

“Savory liquids to balance out the sweet!”

“Mix the prep with Crystal Light Lemonade—instead of the lemon mix the pharmacy provides. Drink the prep through a straw and suck on hard candy (e.g., Werther’s Originals) in between doses to get rid of the taste and have something to look forward to.”

“Take SUTAB (pill prep) and Zofran and then fall asleep. Your bowels will wake you up and you’ll avoid the nausea but start the pooping process. I do the same for the morning dose! If you vomit, at this point it’s fine, just hopefully after the nap and pills are digested!”

“Gummy bears/worms!”

“Pill prep has been a gamechanger for me!”

“Extending the clear liquid diet an extra half day or full day helps a ton with prep.”

“You have to have a movie downloaded on a device that you can have in the bathroom and a pillow for the toilet seat for your back. I’m a fan of disposable diapers because after the first several poopy poops, you get to the drizzle stage and then it’s annoying to have to get up every two seconds towards the end. They also come in handy when you’re sleeping and when you’re traveling to the procedure.

“Before I have a colonoscopy I write down positive affirmations and thoughts and there is like a Table of Contents that’s like “When you’re sad” or “When you need a good laugh” and it really helps me though the ups and downs, although it may sound silly. I choose what to drink and I always have my good luck drink which is blue Gatorade.”

“Use nuun electrolyte drink instead of Gatorade!”

“My personal hacks are to follow what you know works for you. I followed the timings of when to take what from the last instructions and it wasn’t the cleanest prep. I should have listened to my gut and started doing that earlier. I resort to drinking Ensure Plus instead of just relying on broth and soft foods to keep me feeling full. It’s helped me SO much. I know not everyone can tolerate it or like it, but when I was on a liquid diet about a year ago for two months, I only had Ensure Plus. I got used to it. It’s now a lifesaver, especially if I’m traveling or on the road and not sure what food I will have access to. It helps to start the diet a bit earlier, so mash and fish instead of just toast and pasta.”

“I mix apple juice with my Suprep! I also always buy bone broth or stock because the protein per cup is higher. I like the Zoup brand because there’s 3 or 4 gram of protein per cup. I also get the College Inn brand bone broth which has up to 10 grams of protein per cup.”

“Gummy bears!! Just not the red or purple ones. Just being able to chew something helps! Progresso Chicken Soup. Use a metal strainer to strain out all the solids and then sip the broth. It’s thicker and has more flavor than regular stock and it’s just more satisfying.”

“Remind yourself “this is only temporary.” Having loved ones supporting also helps to distract a little, which makes it easier to get through. Focusing solely on drinking cup after cup can seem very overwhelming.”

“Start a low residue diet a few days early even before your doc says to. Mix prep with Sprite. Have hard candies or gum to chew on while doing prep. Use a measuring cup or something to lines to indicate how much to drink.”

“I really love the Trader Joes less sugar lemonade mix with water for my prep. I chugged and it was so delicious! Also, ice pops like the good pop brand were yummy.”

“Gummy bears! Making ice cubes out of juice and chewing on the ice.”

“Make sure it’s cold! Drink with a straw, chew Juicy Fruit gym in between drinks, this helps cut the saltiness. Do two-step prep if your practitioner allows it (half the night before and the other half in the morning). Ask if you can use one of the lower volume prep or the MiraLAX and Gatorade prep.”

“For the MiraLAX prep I use two different flavors so I can alternate when I get sick of one.”

“Mix the prep early and put it in the fridge. Have music and TV on to help distract yourself.”

“While most people say to drink it cold, I prefer my prep at room temperature so I can chug it faster.”

“Always lots of ice and drinking thru a straw. Big gulps. Have a station in the bathroom with a laptop streaming Netflix. I also got a Bidet before my last one!”

“Gummy bears! I buy the Haribo ones and don’t eat the red ones. My favorite prep hack thus far. It’s great getting to chew something when everything else is liquid.”

“Lots of mint tea when the cold chills kick in a few hours before you have to go in for the procedure.”

“Use a Pedialyte jug and ensure it is very cold and drink the prep with a straw. The slower you drink, the worse it is. I always chug it super-fast through a straw and it gives me 10-15 minutes between each cup. Have lots of other drinks that you don’t normally consume to make it fun and have lots of juice, Jello, soda, and popsicles on hand!”

“I’ve turned prep days into self-care days. I binge shows, nap, relax, and try to take care of myself.”

“I like to alternate between sweet/cold beverages and salty/warm soups when I am trying to stay hydrated before starting prep. Sprite/popsicles/lemon ice and then chicken broth.”

“I chase my prep by sucking on approved colored Lifesavers. They truly are a lifesaver for me. I could never do it without them.”

“I recommend the pill prep instead of liquid prep if you’re neurodivergent or have issues with taste and textures. Maybe keep a backup on MiraLAX and Gatorade or juice in case you can’t tolerate the liquid prep. If you know you get nauseated, take prescription anti-nausea medication like Zofran before you begin the prep. I like Squatty Potty and having wipes to dab and pat my skin. A Peri Bottle can be useful. If you’re prone to hemorrhoids or know you have vascular issues like pelvic congestion syndrome, apply hemorrhoid cream in advance. Keep Zinc Oxide handy if it starts to burn or feel raw. Get into comfortable clothes that’s easy to get in and out of in the bathroom. I personally use a heating pad and Bentyl for intestine cramping. I usually make sure I’m scheduled first thing in the morning, and I ask for extra IV fluids.”

The Takeaway

Colonoscopy prep is a universal challenge in the IBD community, whether you’re a child facing your first scope or an adult whose been through dozens. But as the stories above reveal, there are countless ways to make it less daunting through creativity, distraction, teamwork, and sometimes sheer humor.

I personally start a full liquid diet 4-5 days before my scope to ease the actual prep. I make sure I have Zofran on hand to manage my nausea (I always vomit, regardless), and I prefer the SUTAB pill prep. I’ve done multiple preps since being diagnosed with Crohn’s disease in 2005, and my last three preps, SUTAB pills have been the “most tolerable.” While MiraLAX/Dulcolax is popular, I never enjoyed having to drink such a large volume of liquid. Having gummy bears on hand is also a necessity for me! My husband always takes the day off work, and we go out to breakfast and spend the day together afterwards as a reward for all I went through.

If you’re gearing up for a prep, remember you’re not alone. Thousands of IBD patients and caregivers are walking this same path and learning tricks along the way. Find what works for you (or your child), advocate for needs, and give yourself grace. And once it’s done? Celebrate that victory meal and the relief of getting through another milestone in your IBD journey.

Magnesium Deficiency in IBD Patients and the Role of Natural Support

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When you’re living with a chronic illness like Crohn’s disease or ulcerative colitis, it’s easy to become hyper-aware of every medication, every symptom, and every nutrient—or lack thereof. One essential mineral that often flies under the radar is magnesium.

Magnesium supports nerve function, hormone balance and how we respond to stress, so when levels drop, the nervous system can become overly reactive. For those with Inflammatory Bowel Disease (IBD), these symptoms can be even more noticeable because our bodies often struggles to absorb and retain magnesium properly.

According to Hollie King, Founder of Sweet Bee Organics, this humble mineral could be one of the most powerful tools in the IBD toolkit. This week on Lights, Camera, Crohn’s Hollie explains why magnesium matters so much for people in our community.

While I was working on this article, I did an Instagram poll asking the IBD community if they take a magnesium supplement. Of the 245 people who responded, 34% said “yes”, 29% said “no”, and 37% replied “should I be?”

The power of Magnesium

“Magnesium is one of those quiet powerhouses in the body,” Hollie explains. “It’s often overlooked, but absolutely essential. It plays a role in over 300 biochemical reactions, helping muscles relax, supporting proper nerve function, balancing hormones, and aiding energy production.”

When magnesium levels drop, your body knows it—but it doesn’t always scream it out loud. Instead, it whispers. Symptoms like anxiety, poor sleep, muscle cramps, low energy, and even restless legs may emerge. But there are subtler signs too: eye twitching, heart palpitations, tingling sensations, and a hypersensitivity to noise or stress.

For those with IBD, particularly Crohn’s disease, magnesium deficiency can be even more pronounced. “When the gut is inflamed or damaged, it struggles to absorb nutrients properly,” Hollie shares. “And magnesium is one of the first to drop.”

The Magnesium–IBD Connection

Recent research, like the article “Magnesium—A Potential Key Player in Inflammatory Bowel Diseases?” published in the Journal of Inflammation Research, highlights the strong link between magnesium deficiency and IBD. But knowing you’re deficient and being able to do something about it are two very different things, especially if your gut can’t absorb it well.

That’s where Sweet Bee Organics comes in. Rather than relying on supplements taken by mouth, Hollie and her team focus on transdermal support—a method that completely bypasses the digestive system.

“Our Sweet Sleep Magnesium Butter delivers highly absorbable magnesium chloride directly through the skin,” Hollie says. “You simply massage it into your chest, feet, lower back, or even your tummy before bed. It’s not just about topping up magnesium—it’s about calming the nervous system, supporting sleep, and helping the body reset.”

The Sweet Sleep Magnesium Butter isn’t just effective—it’s a best-seller across the U.S. and U.K. for a reason. “We’re obsessed with packing as much magnesium as possible into our balm,” says Hollie. “It’s not easy, but we’re committed to delivering a product that works—and works quickly.”

For people with Crohn’s or ulcerative colitis, the benefits of restoring magnesium levels can be profound. Balanced magnesium supports better digestion, improves sleep, reduces muscle tension, steadies mood swings, and even eases PMS symptoms. You sleep better. You feel calmer. Your energy becomes more stable, and your muscles feel less tight or twitchy.For IBD patients in particular, it can help calm inflammation and improve nutrient absorption—essential steps in managing the day-to-day symptoms of the disease.

“It’s not a magic fix, but it’s one of those foundational nutrients that helps everything else work better. The biggest thing people notice? They just feel more like themselves again,” Hollie explains.

Hollie’s Health Journey

This mission is deeply personal for Hollie, who was diagnosed with aggressive cervical cancer and had to completely reimagine how she cared for her body. “Magnesium became an important part of my healing journey. It wasn’t just about sleep or stress—it was about helping my body heal, rebuild, and feel safe again.”

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Hollie happens to be my husband’s first cousin—and witnessing her health transformation and all she’s accomplished since her cancer diagnosis has been awe-inspiring. We’re not only family, but friends and I admire her and the genuine work she’s doing. We’ve wanted to collaborate for awhile and when Hollie saw the recent published medical study regarding magnesium and IBD we knew this was the perfect opportunity.

Hollie and I took our kids trick or treating this past Halloween when she was back in the States

Her empathy extends to the IBD community. “For anyone living with IBD, I truly see you. I know how exhausting it can be to manage symptoms, juggle treatments, and wonder if your body is even absorbing what it needs. That’s why I created Sweet Bee. Magnesium might seem like a small thing, but sometimes the smallest shifts are the ones that change everything.”

How is Magnesium Measured—and Why the Standard Test Might Miss the Mark

Many of us assume a blood test will tell the full story, but Hollie points out that traditional serum magnesium tests only measure about 1% of the magnesium in your body.

At my clinic visit with my GI last week, my doctor included magnesium in my lab work and the results were within range, but he also told me there would be no harm in using the transdermal magnesium discussed in this article.

For people with IBD, especially those experiencing persistent symptoms, your GI may suggest testing beyond the standard serum magnesium draw or even recommend supplementation based on symptoms alone. This may be something you want to bring up during your next clinic visit or over the Patient Portal.

How to Naturally Raise Your Magnesium

While supplements are helpful, diet is still key. Magnesium-rich foods include:

  • Pumpkin and chia seeds
  • Almonds, cashews, and peanuts
  • Beans and legumes
  • Spinach, broccoli, and potatoes with skin
  • Whole grains like oats and brown rice
  • Avocados, bananas, raisins
  • Milk, yogurt, and soy milk
  • Salmon, halibut, chicken, beef
  • Fortified cereals

That said, people with IBD often can’t rely solely on food due to absorption challenges. This is where topical support like Sweet Bee’s magnesium products truly shine.

Can You Take Magnesium with Crohn’s or Colitis?

Yes, but with care. Magnesium—especially in forms like citrate—can cause loose stools, which is problematic for IBD patients. That’s why topical magnesium is often a safer, more effective choice.

Always consult with your gastroenterologist before starting new supplements, especially if you’re in an active IBD flare, dealing with kidney disease or if you’re concerned about the medication(s) you are on.

Final Thoughts

In the landscape of IBD care, it’s easy to feel overwhelmed. But as Hollie reminds us, simple, natural tools—when thoughtfully applied—can offer real relief. Whether you’re struggling to sleep, feel calm, or just want to feel like yourself again, magnesium might be what your body’s been craving.

“You deserve to feel strong, rested, and well in your body. Replenishing magnesium levels in a gentle, non-irritating way can make a real difference in how you feel, both physically and emotionally,” Hollie says. “And we’re here to support that every step of the way.”

Learn More About Sweet Bee Organics

To explore Sweet Sleep Magnesium Butter and other clean wellness products created with love and integrity, click here. Use code NATALIE15 for 15% off sitewide.

Sweet Sleep was recently spotlighted on The View Co-Host’s Favorite Things for Mother’s Day. Check out the segment here.

Additional resources:

Can You Take Magnesium With Crohn’s or Colitis? | MyCrohnsAndColitisTeam

IBD and Magnesium | InflammatoryBowelDisease.net

Magnesium for ulcerative colitis: Benefits and more

Does Magnesium Provide a Protective Effect in Crohn’s Disease Remission? A Systematic Review of the Literature

Malnutrition in Ulcerative Colitis: 6 Common Vitamin and Mineral Deficiencies

What can magnesium do for you and how much do you need? – Harvard Health

Disclaimer: This article was not sponsored, but the content is for informational purposes only and does not replace professional medical advice. Always consult your healthcare provider before starting any new supplement.

Cardiac Complications in the IBD Population

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Inflammatory bowel disease is increasingly recognized as a condition associated with systemic complications beyond the gastrointestinal tract. Among these, cardiovascular (CV) complications stand out due to their potential impact on morbidity and mortality. One of the presentations I attended at the Advances in IBD conference that took place in Orlando this month explored the relationship between IBD and cardiovascular disease, focusing on the effects of disease activity and commonly used therapies. This week on Lights, Camera, Crohn’s a look at what we need to watch out for as a patient community and how we can be proactive with our providers.

Cardiovascular Risks in IBD

Meta-analyses indicate that IBD is associated with a 24% increased risk of ischemic heart disease. Moreover, there are higher rates of premature (under age 55) and extremely premature (under age 40) atherosclerotic cardiovascular diseases in our population. The underlying mechanisms are multifactorial, but persistent inflammation and disease activity are key drivers of arterial events.

Heart failure (HF) risk is also elevated among individuals with IBD. Notably:

  • The risk appears greater in patients with ulcerative colitis compared to Crohn’s disease.
  • Female patients with IBD demonstrate a higher predisposition to HF than their male counterparts.
  • Corticosteroid use further exacerbates the risk of HF in this population.

Cardiovascular Considerations for IBD Therapies

Anti-TNF Therapy

Anti-TNF agents (infliximab, adalimumab, certolizumab pegol, and golimumab) have been linked to worsening congestive heart failure (CHF). In patients with pre-existing heart conditions or known cardiomyopathy, baseline cardiac assessment is critical. Recommendations include performing a transthoracic echocardiogram (TTE) before initiating anti-TNF therapy and monitoring for new or worsening cardiac symptoms during treatment.

JAK Inhibitors

The use of Janus kinase (JAK) inhibitors ( Tofacitinib, filgotinib and Upadacitinib) raises concerns regarding cardiovascular risks, including:

  • Increases in low-density lipoprotein (LDL) and triglycerides.
  • Development or exacerbation of hypertension.
  • Major adverse cardiovascular events (MACE).

For patients starting on JAK inhibitors, clinicians should:

  • Discuss the patient’s cardiovascular history and risk factors.
  • Perform a baseline lipid profile, with a repeat evaluation at 8-12 weeks after initiating therapy.

S1P Receptor Modulators

Sphingosine-1-phosphate (S1P) receptor modulators, a newer class of therapies for IBD (ozanimod, etrasimod, fingolimod and laquinimod), can impact cardiac conduction. To mitigate risks:

  • Screen for symptoms suggestive of conduction abnormalities.
  • Review the patient’s drug history for concurrent use of anti-arrhythmic agents or drugs that prolong the QT interval.
  • Perform an electrocardiogram (ECG) prior to initiating therapy.

Clinical Implications

Cardiovascular complications are common in patients with IBD, often presenting at a younger age than in the general population. The association between active disease and increased CV risk highlights the importance of maintaining disease control. Non-steroidal options for long-term management should be prioritized, as corticosteroids exacerbate both IBD and CV risks.

Therapeutic decisions should also account for the cardiovascular safety profile of IBD medications. High clinical suspicion and proactive monitoring are essential for detecting underlying or developing cardiovascular disease in IBD patients. Understanding the risks associated with specific therapies, such as anti-TNF agents, JAK inhibitors, and S1P receptor modulators, can guide personalized treatment plans and improve long-term outcomes. When meeting with your gastroenterologist communicate any concerns you may have about chest pain or your blood pressure.

Closing Summary

Cardiovascular complications in IBD patients necessitate a high level of vigilance from healthcare providers. Early detection and management of cardiovascular risks are paramount, particularly in young IBD patients who may already be vulnerable to inflammation-driven atherosclerotic changes. A tailored approach—balancing effective disease control with an awareness of therapy-specific cardiovascular risks—is critical to optimizing care in this complex patient population.

Additional resources:

Cardiovascular implications of inflammatory bowel disease: An updated review – PMC

The risk of cardiovascular complications in inflammatory bowel disease – PMC

Inflammatory Bowel Disease and Cardiovascular Diseases – The American Journal of Medicine

Heart Disease and IBD: Understanding the Connection | MyCrohnsAndColitisTeam

RISK OF CARDIOVASCULAR DISEASE IN PATIENTS WITH INFLAMMATORY BOWEL DISEASE: A SYSTEMATIC REVIEW AND META-ANALYSIS | Journal of the American College of Cardiology

Words of Wisdom: What IBD Moms Wish They Could Tell Their Younger Selves

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If you’re a young girl or woman diagnosed with a chronic illness, prior or during your “childbearing” years, chances are you or your parents may wonder what this means for your future family. When I was diagnosed with Crohn’s disease at age 21 in 2005, the thought of settling down and having kids was not on the radar but ever since I was a little girl I always aspired to be a mom. Fast forward to 2008, I was hospitalized for an abscess and taken off Mesalamine and put on a biologic injection (Humira). I can still picture the discussion with my GI. My mom sitting on the couch alongside the hospital window, looking at me wide-eyed, and us wondering if I’d ever be able to have children on my new medication. A medication I was told I’d be on for the rest of my life. I was 24. Back then there was nowhere near the research or guidance available like we have today.

August 2008-One month after starting Humira and on heavy duty steroids.

It was the first time I really began to question and worry about whether I’d physically be able to be a mom. As the flare ups, ER visits, hospitalizations, and tests persisted for years, I honestly didn’t have the energy to think about what my life would look like down the road, I only had the energy to focus on what was going on in that moment. I was not a patient advocate and looking back I was a bit naïve and uneducated about what it meant to have not reached remission.

When I met my husband in 2013, little did we know that for the next two years I would be at my sickest. What we did know—is that we both wanted kids one day. After my third bowel obstruction hospitalization in 15 months, I needed bowel resection surgery in August 2015, which FINALLY put me into surgical remission. Ironically, I was engaged to be married. Babies were on the brain. Since I lived a decade without remission, we knew we were going to have to try for a baby as soon as we got married, as remission can be fleeting. At 32 years old, I didn’t want to take any chances.

A lot has happened since we got married. We got pregnant a month after getting married. Lost our second baby around 7 weeks. And then had our rainbow baby in 2019 and our caboose of the family in 2021. If you’ve followed my advocacy and blog, you know I’m passionate about showing all that’s possible despite your IBD. I know each of our journeys is incredibly intricate and unique, each of us deals with our own set of challenges. But I also know that my younger self would have benefited immensely from seeing and hearing fellow women who’ve been there and done it and have families to show for it despite their chronic illness.

This week on Lights, Camera, Crohn’s we hear from several IBD moms—with kids ranging from newborn age to now adults—who offer amazing perspective that I hope will make you feel comfort in what the future could hold for you.

What IBD moms want you to know

Jennifer: “It’s 100000000 percent worth it! And be honest with your kids and spouse about how you are feeling and what you are going through. Of course, make it age appropriate, but they need to know the struggle.”

Liz: “Your kids will learn their limits and love on you when you need rest. It’s ok to go slow. Even if you flare after birth, you will come out of it.”

Amber: “I would tell a younger me that my body WAS capable of carrying and delivering healthy BIG (lol) babies. After struggling with fertility and then conceiving twins and carrying them full-term, I realized my body hadn’t failed me (how I think so many of us with IBD feel. Motherhood is possible for us and thank you Natalie for reminding us of that.”

“Find your people and be honest with them about how you are doing. Don’t ever feel bad asking for help. It truly takes a village to help.”

Brooke: “One day, you will be better. One day, you will coach little league and make the playoffs. One day, you will work on Capitol Hill. One day, you will live in another country. One day, you will be the best mom and you will thrive through IBD. You’re almost there!”

Jaime: “I would tell my younger self that fertility is not something you take for granted especially with a chronic inflammatory disease that can leave you prone to developing scar tissue. I’d also tell her that IBD may make life hard for awhile but with the right doctors, life will improve and the family you dreamed of having will happen.”

Jessica: “Motherhood is hard. It’s ever harder when you have an illness. It’s ok to rest when needed without feeling guilty.”

Kaitlyn: “Your kiddos are more resilient and adaptable than you think they are. I had a major flare about 7 months after my son was born. I put off being admitted to the hospital for weeks because I was so scared and felt guilty for leaving my baby and thinking he would feel abandoned without any way to explain to him that I was gone. He ended up having a blast with my husband for a week and I finally was able to achieve some sense of relief (slowly coming out of that flare, but there is a light at the end of the tunnel). Also, you’re not a bad mom for not being able to do the things you think you should be able to do (Spoiler Alert: Your baby doesn’t know other moms take their babies on long walks around the park and don’t have to drag you into every public bathroom you pass while running errands).”

Patti: “You only get one chance to raise your babies, so don’t sweat the small stuff. And frequently remind yourself (on the roughest days) that you really ARE doing the absolute best you can…and that is OKAY.”

Alyssa: “Sometimes you’ll be holding your baby on the toilet, but you’ll be okay, and your baby will be okay. The road will be tough, but so worth it. Some days the kids will watch more TV than you want, but you must take care of yourself too so you can be present for them. They’re resilient and will love you no matter what.”

Ally: “Rest when you can! Your body will most likely go into remission once pregnant so not need to get scared or nervous about it.”

Liv: “Make yourself and your health a priority. I went into a huge flare after having my first baby because I was SO focused on her and not eating properly or showering or taking care of me. Meal prep to make the mental load of eating easier! And ask for help!”

Patra: “Don’t be so hard on yourself when you feel the need to rest.”

Phoebe: “I would tell her to follow Natalie Hayden’s blog and IG account (haha)…seriously though, when I see you and other people share about their pregnancies and family life, it gave me hope to have my child. I would also tell my younger self it’s ok if you’re a mom with chronic illness! My younger self assumed I had to have a perfectly healthy body to have babies and raise babies.”

“Take care of yourself, even if it means asking your loved ones to look for signs of your anxiety and exhaustion that you may just be trying to push through or ignore.”

Jenni: “I would tell myself not to be so hard on myself. I would say don’t take on all the sick mom guilt. To let them watch movies and eat cereal without stressing about it when I wasn’t feeling well. I would also say…you don’t have to pretend to be brave all the time. It’s ok for them to see you cry or feel frustrated or be sick. They can handle it, and it is creating such strong, caring, empathetic humans!”

Courtney: “I would tell my younger self that I am enough for my kids and that they will be better people because of what they learn and see.”

Mallory: “Your children are strong, and they understand that it’s not your fault.”

Meg: “You did the right thing by staying on your meds through pregnancy and your baby is perfect.”

Kelly: “You are enough. Don’t feel like you’re not able to be as great of a mom as a healthy mom is.”

Ryann: “All you need is love. While I’m sure my son loves the active days when we’re doing lots of activities, he’ll be fine on the days that I’m laying down on the couch as long as I show him love.”

Rachel: “You’re stronger than you know, and everything will work out no matter what happens.”

Amanda: “Not to let fear of the “whatifs” cripple you.”

Brenda: “You will do great and be sure to find a selfless hands-on partner.”

Kristin: “Give yourself some grace. I didn’t get diagnosed or have any Crohn’s issues until my son was 15 months old. The symptoms came on like wildfire and it took a village to help until I figured it all out.”

Anna: “I want to jump in this convo as a 50 year old who wanted to be a mom, but due to the severity of my disease (diagnosed at 18), was told at 29 to have children by 35 due to being high risk and at 34, I was told not to carry due to complications and unfortunately adoption was not in my future as a single woman with severe illness no another option (freezing eggs, etc.) at that point in time. I feel like that is the MAIN thing Crohn’s stole from me! After many years of therapy, I cope with it very well now; however, I still from time to time mourn not being able to have children that aren’t four-legged…#dogmama!”

Courtney: “I would tell my younger self not to worry about having to use the bathroom urgently so much and that you’ll be carrying around diapers, wipes, and a little potty in your car for years. Your kids will also be able to relate to having accidents. I would all tell her that fertility declines a lot faster for people with chronic inflammation and to get your AMH levels checked early. Or think about freezing embryos if you want a big family in your mid to late thirties. Lastly, that breastfeeding won’t stop your kid from having IBD, so don’t worry about giving them formula.”

Ashley: “So, one time I posted on Reddit about how I have ulcerative colitis and didn’t know if I should have kids…I got a lot of responses. I got 56 that told me not to do it. How they were miserable. Or how their mom had it and they suffered as a kid. It was honestly traumatizing. And int that moment, I made the decision not to have kids.”

Tricia: “There will be some really tough days with your illness, and trying to take care of your kids, but you’ll get through this, and better days are ahead.”

Shannon: “Nap when the baby naps is legit. But also, when the baby is 12, you’re still going to need to take a nap. And that’s okay. It doesn’t make you less than because your body requires rest and reset. It is productive to take a nap if it’s necessary.”

Chanel: “That this chronic illness has a direct effect on pregnancy. Having this disease since 7 years old, no doctors ever thought it would be helpful to mention how important being in remission was before getting pregnant or trying for a baby until I was 26 years old and happened to nonchalantly mention to my doctor at the time that we were going to start trying.”

Jennifer: “Don’t worry! You will be blessed with two beautiful children and IBD will not define who you are and will not hold you back from anything!”

Stephanie: “Be easy on yourself and don’t put high expectations on yourself. It will all be worth it. Take it a day at a time and do what you need to do to feel better. Your kids will learn and be more empathetic and compassionate people for it.”

Bhavna: “It’s going to be hard. More emotionally than physically. You will even doubt whether you should have kids for fear of passing it on. I know eventually I did. My daughter now has an autoimmune condition. But despite all of this, you will make it through. Stronger. Resilient. Sometimes a tad sadder.”

Rosanne: “Kids are more resilient than you think. Motherhood is worth having to potentially miss a few things because of a flare or a difficult day. Your kids will understand and be stronger because of it.”

Pie: “Mum guilt will chew you up on the days that you can’t get out of bed. It’s okay, your little one will grow up to be empathetic and understanding of others.”

Amy: “I was completely well for the 8 years I was pregnant and breastfeeding my three boys. Almost a year after finishing feeding my youngest, I immediately went into a massive flare and have not managed to recover yet (10 months now). I felt betrayed all over again by my body, just at the time when I needed it to be strong. I would tell her that the most important thing is that you’re well, so that you can be the best version of yourself. Children are beautiful, they will take you exactly as you. Try to follow their lead. You are enough. They will forget at times you were absent due to resting, appointments, etc. But they will remember how hard you fought for your health. My middle school boy now seems to be suffering with gastro issues and it’s essential to me that I show him that I have the disease, it does not have me (enough though some days that doesn’t quite work out).”

Megan: “Some days are hard, but you can do it! You will be shocked at how much compassion it gives your children. They understand “mommy doesn’t feel well” at such an early age and really want to help take care of us. Vivi asks me daily, “Mommy, does your belly hurt today?” and says, “I’ll take care of you, Mommy.”

Kara: “Don’t forget to take care of you before it’s too late! You are doing your best and your children will only remember that later. My kids are 8 & 10 now, but when I was pregnant with my youngest, I went into a flare and refused to tell anyone or acknowledge it, thinking it would make me a bad/weak mom…so dumb right? By the time my youngest was 1, I was making an appointment for a temporary ileostomy bag. But my kids only remember the sweet stuff.”

Stephanie: “Simply, it’s possible! It was worried for so long that it wasn’t possible, especially once on a biologic and your Instagram page, Natalie, gave me so much hope! Now, less than 2 weeks from delivering my second baby (but my first pregnancy on a biologic).”

Marnie: “I would tell my kids your disease becomes part of your everyday routine, but it doesn’t define you.”

Crystal: “Make sure your baby learns to take a bottle in case you end up in the hospital with a flare.”

Leslie: “Don’t be scared to be on all the medication you need. You’ll get pregnant one day like you always dreamed.”

Keyla: “This journey will be hard but no matter what your little one becomes stronger through it with you.”

Christine: “Here I am celebrating my 47th birthday with my teenagers! One of the first questions I asked my doctor, according to my mom, was will I be able to have kids? That was when I was 23 years old. Here I am at 47, and they have seen me at my best, and unfortunately, my worst. They are truly the reason why I keep going and want to keep fighting at the worst of times.”

Amy: “Your journey might look different than others, but you can still have a family. Also, accept help when you need it.”

Robin: “My kiddos are 27 and 25 now and I was diagnosed when the 27-year-old was 2.5 and the 25-year-old was a baby. She turned one and took her first steps in the family visiting room at the hospital. So, I have the benefit of living with the fruits of my parenting labor. My IBD has taught me that life is precious. Each moment is precious. Because of this, I really tried to take advantage of life when I was feeling well. AND ALSO, I tended to push through when I wasn’t feeling well if something was important to my family, specifically my children. Your first instinct as a parent will be to protect your children from what you are going through – but it’s ok to be open about what you are experiencing in age-appropriate ways. There is no one perfect way to be a parent, much less be a parent with a chronic illness. Give yourself some GRACE. 

If dads, or aunts, or family friends, or grandparents are jumping in to chauffeur your kiddos and/or take them to do fun things that you can’t do – IT STILL COUNTS! Your kids are still getting to do the thing. Your kiddos will benefit from having other adults they know and trust in their lives. 

Parenting isn’t for the faint of heart. Connect with people that can share the burden. It’s ok to ask for help. I write this while remembering my mantra was “suck it up and figure it out” when they were little. Granted – I was a single parent for a lot of their young life, and I was fortunate to have a strong support system. Even with the support it was difficult to ask for help. SO, ASK FOR AND ACCEPT HELP.

I don’t know what kind of mom I would have been without IBD, but based on who my girls are now, I’m ok with the mom I was and am with IBD.”

Final Thoughts

Hearing this firsthand perspective from all these incredible IBD moms is so inspiring and comforting. It’s a reminder we are not alone in our struggles or our fears—and let’s face it, motherhood isn’t all sunshine and rainbows. But the beauty motherhood brings to our lives and the unbelievable love you feel for your children is the sunshine and the rainbows that makes it all worth it. When you’re an IBD mom, yes there’s a lot of internalized pain and worry. But there’s also so much motivation and joy found in looking into the eyes of your children and knowing that you are enough and will always be enough for them because you’re you.

There are times when their diapers and bathroom habits may set off alarm signals in your head. Don’t think I haven’t brought one of my kids to the ER because I was fearful, they had IBD…wasn’t that. There have been moments where I’ve been bent over making school lunches. There are times I’m on the couch with a heating pad during bedtime stories or in the bathroom mapping out my game plan of how life will go on if I’m hospitalized, and all the moving places I have to orchestrate if I’m out of commission. But SO much overshadows those moments.

As an IBD mom of three, my kids give me such purpose to celebrate each day and soak in each experience I’m blessed to share with them. They provide me with renewed faith in my body and all that I’m capable of. They remind me to laugh and not take life so seriously. When I’m in pain or going through prep for a scope or an uncomfortable procedure my thoughts float to their sweet faces and the incredible memories we’ve shared and it’s the best reprieve from my painful current reality.

When you’re a mom with chronic illness, sure the days can feel long and the years short…but you have a different level of gratitude for what may seem mundane to others. You will second guess yourself more than your children ever will. They are sponges, watching and soaking up their lived experience with you and without even doing anything you’re raising a children with innate empathy and compassion that you’ll see play out as they grow up—I’ve seen it for YEARS with my kids—and while I wish they weren’t the way they are because of my health, I also wouldn’t have it any other way. IBD is a family disease, it impacts way more than just the patient and know that if you choose to carry children, adopt children, or have babies through surrogacy, you are never a burden to your family. You are enough and always will be to your beautiful babies.

My family planning advice for you

My advice family planning

  • Have the discussion about your future 3-5 years out (if possible) so you can get a game plan in place. Something as simple as letting your provider know…”someday I hope to be a mom”…is sufficient. This sets the stage for what makes the most sense medication wise, targeting and tracking remission, planning scopes so you can get the ‘green light’ before conception, etc.
  • Do not try and conceive if you haven’t been in remission for at least 3-6 months. Sure, pregnancies are not always planned and can be a surprise but try not to get pregnant while you’re flaring or have active disease as that increases the likelihood of flaring during pregnancy and after delivery.
  • Once you find out you’re pregnant, alert your GI the same day as your OBGYN and get the ball rolling on finding a maternal fetal medicine (high risk OB) to be part of your care team.
  • Do not try and go rogue and go off all medications for pregnancy. Talk with your care team. Do the research so you can see firsthand about the safety and efficacy of most IBD meds in pregnancy and breastfeeding and be confident that by keeping yourself well and your disease controlled in pregnancy, you are helping you and your baby.
  • Check out the PIANO study and MotherToBaby research opportunities so you can help pave the way for future IBD moms and contribute to research. It’s so rewarding, and your voice and input makes a world of difference. My older two were part of MotherToBaby studies and my youngest is part of PIANO, he’s being “followed” until age 18!
  • Never hesitate to reach out to fellow women with IBD on social media who are moms and receive firsthand advice about their journey so you can feel a bit more at ease about yours.

The Gut-Brain Connection: Understanding Its Role in Inflammatory Bowel Disease

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Ever have a feeling in your gut that says you can trust someone or to make a certain decision? Get diarrhea or constipation when you’re under a lot of stress or anxiety? Your gut is so sensitive and smart scientists call it your “second brain! The human body is a complex ecosystem, with various systems interconnecting in intricate ways. One of the most fascinating of these connections is between the gut and the brain, often referred to as the “gut-brain axis.” This communication network plays a crucial role in maintaining our overall health, influencing everything from mood and cognition to immune function and digestive health. Emerging research indicates that the gut-brain axis may significantly influence the development and progression of IBD. The big question being—how?

This week on Lights, Camera, Crohn’s a look into how the Gut-Brain Axis works and what this means for the future of IBD treatment and care. Whether it’s stress, people pleasing, avoiding emotions, or anxiety—there are many triggers aside from food.

The Gut-Brain Axis: A Two-Way Street

Before we get started, it’s helpful to understand what the gut-brain axis involves and the multiple pathways it impacts, including the nervous system, the endocrine system, and the immune system. The primary components of this axis are:

  • The Enteric Nervous System (ENS): Think of this as how it feels when you get “butterflies in your stomach”. The ENS is a vast network of neurons (nerve cells that send messages all over your body to allow you to do everything from breathing to talking, eating, walking, and thinking) embedded in the walls of the gastrointestinal tract. It operates independently of the central nervous system but communicates with it via the vagus nerve, which runs from the brainstem to the abdomen.
  • Neurotransmitters and Hormones: The gut produces and responds to various neurotransmitters and hormones, including serotonin, dopamine, and cortisol. These chemicals are crucial for regulating mood, stress responses, and digestive functions.
  • The Microbiome: Trillions of microorganisms reside in the gut, forming a complex and dynamic community known as the microbiome. These microbes play a critical role in digestion, immune modulation, and even the production of neurotransmitters.

The Gut-Brain Connection and IBD

Chronic inflammation in IBD can affect the enteric nervous system, leading to alterations in gut motility and sensitivity. Those of us with IBD often experience abdominal pain, cramping, and changes in bowel habits, which are partly mediated by the nervous system. Conversely, stress and psychological factors can exacerbate IBD symptoms. Stress activates the hypothalamic-pituitary-adrenal (HPA) axis, leading to the release of cortisol and other stress hormones, which can, in turn, promote inflammation in the gut.

The Role of the Microbiome

The gut microbiome is crucial in maintaining intestinal health and regulating immune responses. For those with IBD, the composition and diversity of our gut microbiomes are often disrupted, a condition known as dysbiosis. Dysbiosis can contribute to the chronic inflammation seen in IBD by impairing the gut barrier function and promoting an overactive immune response. Interestingly, the microbiome also communicates with the brain through the production of metabolites and neurotransmitters, which influences mood and cognitive function.

You can optimize your gut microbiome with diet by eating:

  • Green leafy vegetables (broccoli, kale, Brussel sprouts, asparagus, spinach, garlic, etc.).
  • Healthy fats (extra virgin olive oil, sesame oil, coconut oil, nuts, seeds)
  • Protein (eggs, fish, grass-fed meats)
  • Low sugar fruits (avocado, bell peppers, cucumber, tomato, zucchini, limes, and lemons)

*Before altering your diet or incorporating foods that could trigger disease activity, please talk with your care team and discuss this further with a registered dietitian who specializes in IBD.

Psychological Factors and IBD

IBD is often associated with psychological conditions such as anxiety and depression. According to the Crohn’s and Colitis Foundation,  we’re two to three times more likely to deal with anxiety and depression than the general population. These mental health issues can both contribute to and result from the physical symptoms of IBD. For instance, chronic pain and discomfort can lead to increased stress and anxiety, while anxiety and depression can exacerbate gut inflammation and symptom severity. It’s a vicious cycle that can often feel out of our control.

Therapeutic Implications

Understanding the gut-brain connection opens new avenues for the way we treat IBD. Traditional treatments focus on reducing inflammation and managing symptoms through medications and lifestyle changes. However, addressing the gut-brain axis could provide additional therapeutic benefits. Some potential approaches include:

  • Probiotics and Prebiotics: These can help restore a healthy balance in the gut microbiome, potentially reducing inflammation and improving gut health. Talk with GI about their thoughts on this, as each provider has their own opinion.
  • Psychological Interventions: Cognitive-behavioral therapy (CBT), mindfulness-based stress reduction (MBSR), and other stress-management techniques can help manage the psychological aspects of IBD, potentially reducing symptom severity. Tools such as breath work and gut-directed hypnotherapy can help to improve GI systems, while improving your mood and decreasing stress. This works by softening the body’s stress response, inhibiting the secretion of cortisol, decreasing inflammation, and supporting the immune system.
  • Dietary Modifications: Certain diets, such as the low-FODMAP diet, can help manage symptoms by reducing gut irritation and inflammation. Personalized nutrition plans based on an individual’s microbiome composition are also being explored. Connecting with a registered IBD dietitian can provide you with a personalized plan geared to where you’re at on your patient journey—this will differ if you’re recovering from surgery, pregnant, flaring, the list goes on. Diet is not a one size fits approach, it’s unique to you. Before you start eliminating entire food groups and putting difficult limitations on yourself, talk with a professional.
  • Pharmacological Treatments: Medications that target the gut-brain axis, such as those that modulate neurotransmitter levels, are being investigated for their potential to treat both the psychological and physiological aspects of IBD.

Final thoughts

Our gut and brain are in constant contact through nerves and chemical signals, and taking care of our mental health and our gut health goes hand in hand. The relationship between our gut and brain is a fascinating and complex one that significantly influences our overall health, playing a pivotal role in everything from mood and cognition to immune response and digestive health. For those of us living with IBD, understanding and addressing this connection can provide new insights into the management and treatment of our disease.

As research continues to uncover the complexities of the gut-brain axis, we move closer to a holistic approach to IBD care that considers the intricate interplay between mind and body. Know that there are psychologists who specialize in gastrointestinal illnesses as well as dietitians who do as well. By adding specialists like this to your care team, you’ll be better equipped to manage the unpredictability of life with Crohn’s and ulcerative colitis.

Additional Resources

The Gut-Brain Axis in Inflammatory Bowel Disease—Current and Future Perspectives – PMC (nih.gov)

Researching IBD and mental health through the gut microbiome – UChicago Medicine

The influence of the brain–gut axis in inflammatory bowel disease and possible implications for treatment – The Lancet Gastroenterology & Hepatology

The Gut-Brain Connection — Does It Go Beyond Butterflies? | Live Healthy | MU Health Care

Brain structure and function changes in inflammatory bowel disease – ScienceDirect

Crohn’s disease, gut health, and mental health: What’s the link? (medicalnewstoday.com)

Brain-gut connection explains why integrative treatments can help relieve digestive ailments – Harvard Health

The Skinny on Weight Loss Medications and IBD

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Imagine a medication that not only helps shed unwanted pounds but also holds the promise of alleviating the painful and debilitating symptoms of inflammatory bowel disease (IBD). For millions battling the dual challenges of IBD and weight management, this could be a game-changer. Some reported data suggest approximately 15 to 40% of IBD patients experience obesity. As obesity has been linked to more severe disease activity, anti-obesity medications, such as GLP-1 (glucagon-like peptide-1) receptor agonists (RA), could be a novel treatment strategy for IBD.

Recent research into GLP-1RA medications, primarily known for their role in weight loss and diabetes management, suggests they might have unexpected benefits for those with Crohn’s disease and ulcerative colitis. Could these medications pave the way for a new era in IBD treatment? This week on Lights, Camera, Crohn’s let’s dive into the intriguing possibilities that lie at the intersection of weight loss and inflammatory bowel disease management. You’ll hear from gastroenterologist and researcher Dr. Aakash Desai, along with 25 people who have IBD and have tried or are currently taking GLP-1RA medications.

What is a GLP-1RA medication?

GLP-1 (glucagon-like peptide-1) medications are primarily known for their role in managing type 2 diabetes and obesity. GLP-1 agonists, such as liraglutide (Victoza), semaglutide (Ozempic), and dulaglutide (Trulicity), mimic the action of the endogenous hormone GLP-1. These drugs enhance insulin secretion, inhibit glucagon release, slow gastric emptying, and promote satiety, thereby aiding in blood glucose control and weight loss.

The majority of these drugs are subcutaneous injections, with only one currently available orally. The frequency of taking the medication varies with each GLP-1RA and can be weekly, daily, or twice daily. But, the typical dose is a weekly self-injection, which can be done in your stomach, upper arm, buttocks, or thigh.

The Mechanistic Link to IBD

  • Anti-inflammatory Properties: GLP-1 receptors are present in the gastrointestinal tract and on immune cells. Activation of these receptors has shown anti-inflammatory effects in preclinical studies. This suggests that GLP-1 medications could theoretically modulate immune responses and reduce inflammation in the gut.
  • Mucosal Healing: Animal models have demonstrated that GLP-1 agonists can promote mucosal healing in the intestines, a critical aspect of managing IBD. This potential for enhancing intestinal barrier function and reducing inflammation holds promise for IBD therapy. Scroll to the bottom of the article to check out the latest research.

Considerations between providers and patients

Dr. Aakash Desai, MD, Allegheny Health Network in Pittsburgh, Pennsylvania says that before discussing if GLP-1RA is appropriate for his patients, he tries to understand their weight loss journey on a case-by-case basis.

“This is unique for every patient, so it’s important for the physician to understand where they’re at and the efforts that have been made. I like to ask what type of dietary and lifestyle modifications they have attempted, exercise (finding out actual numbers, number of days/minutes per week of exercise, moderate/strenuous intensity), prior consultations with nutrition and/or weight loss specialist, and prior exposure to weight loss medications. It’s also important to consider comorbidities, especially history of pancreatitis, gallbladder disease, type 2 diabetes mellitus, and psychiatric diseases including eating disorders.”

He tells me a “good” candidate is a patient who is obese or overweight with weight-related complications who is willing to undergo lifestyle interventions in close collaboration with nutrition and a weight loss specialist. From an IBD standpoint, before starting on this type of medication, Dr. Desai likes to see his patients in remission.

“GLP-1RA medications have several GI side effects, so it can be challenging to differentiate if a patient’s symptoms are related to GLP-1RA, active IBD or both. Patients should have their IBD in remission, clinical and endoscopic, and radiographic, if applicable,” explained Dr. Desai.

There is preclinical data suggesting that GLP-1RA can modulate inflammatory responses.

Dr. Desai explained, “Mechanisms include its impact on oxidative stress, immune cell recruitment, cytokine production, and gut microbiota modulation. There is also some clinical data from retrospective studies showing improved IBD outcomes, however we need data from prospective studies to see if these medications can be used as adjuncts with existing IBD therapies.”

He would not recommend starting GLP-1RA for obesity management during a flare/active disease given the risk of drug related GI side effects. This could worsen symptoms which could inadvertently lead to increased dose of steroids, prolonged steroid use or a change in IBD therapy. Additionally, providers prescribing GLP-1RA have a low threshold to discontinue the medication if patients with IBD develop even mild GI symptoms out of potential concern for worsening IBD. 

Ongoing research underway

Dr. Desai is working on a study that involves 150 people with IBD who are obese and taking semaglutide.

“We found similar weight loss compared to patients without IBD. We also found higher weight loss with semaglutide compared to other anti-obesity medications except tirzepatide. We did not observe worsened IBD specific outcomes in patients on semaglutide. In another study from a large database, we found that GLP-1RA use for type 2 diabetes in patients with IBD was associated with a lower risk of surgery for ulcerative colitis and Crohn’s disease, but we did not observe a lower risk of steroid use.”

He tells me it’s important to note that this is retrospective observational data. However, Dr. Desai hopes this sets the stage for prospective studies and future randomized controlled trials. 

From a safety standpoint, there is limited data, however it appears to be reassuring for serious side effects. Dr. Desai believes until we have more robust data, the key will be disease remission at the time of initiation of GLP1-RA. Keep this in mind if you are dealing with active disease and hope to start this type of medication.

There is no data to suggest that patients on biologics or small molecules cannot be on a GLP-1RA if their disease is in remission. The approach needs to be individualized factoring in clinical characteristics and disease profile. 

Scope and Scans and GLP-1s

There seems to be confusion in the patient community about how these weight loss mediations can impact how we prep and undergo scopes and scans. Dr. Desai says there is currently no data supporting stopping GLP-1RA before elective endoscopy – which is a multi-society statement. 

“I follow the clinical practice update published by American Gastroenterological Association (AGA) which suggests an individualized approach to each patient. If patients are on GLP-1RA only for weight loss, I think there is little harm in holding the medicine a week before elective endoscopy. An alternative would be to continue the GLP-1RA and place patients on a liquid diet the day before the procedure.”

For colonoscopy, a recent study in the American Journal of Gastroenterology found increased likelihood of repeat colonoscopy due to poor bowel prep in patients on GLP-1RA.

Dr. Desai says he likes to discuss extended bowel prep (2 days) with his IBD patients.

“Alternatively, I recommend a low fiber low residue diet for 5 days plus 2 days of a clear liquid diet with 1 day of prep. I would encourage patients to discuss management of GLP-1RA and bowel prep with their IBD providers prior to elective endoscopy as institutional protocols especially for anesthesia may vary.”

Hear what an IBD mom has to say about her experience

Emily says she’s been overweight most of her life. She tried everything to lose weight, and nothing seemed to work—or she’d lose weight and gain it right back. She talked with her primary doctor about the weight loss medications and her provider is a big fan of them for the right person and thought they’d be a great fit for her. As an IBD mom of two boys, Emily was worried about what her gastroenterologist would have to say.

“At first, I was nervous about it because I didn’t want him to tell me I couldn’t do it. But he was okay with it. He said if I didn’t have any IBD complications, that I would be fine to be on it. He didn’t have any hesitation since I have been in remission and my colonoscopy and upper endoscopy looked good. I explained that I was followed closely with my primary and that I would let him know if I had any issues that came up. Thankfully, my Crohn’s has stayed in remission!”

Emily started semaglutide in November 2022 and was on that for 7 months and then switched to tirzepatide. She’s now been on that for one year.

“I am starting the process of going into maintenance and will decrease my dose until I find what works for me and plan to stay on this long term.”

Emily’s remarkable transformation from 2022 to now.

She’s currently taking Stelara to manage her Crohn’s. Emily is down 93 pounds, and she feels amazing. She says she has dealt with minimal side effects—some nausea and constipation, but nothing that lasts long. As most of us are, she’s very conscious of her bathroom habits and says if she starts to feel constipated, she takes stool softeners.

Firsthand experience from an ostomate

Elizabeth has perianal Crohn’s and has participated in two clinical trials (stem cells). She has had two gracilis flap surgeries, among others. She says while many IBD patients struggle with keeping weight on, this has not been the case for her.

“I have always been in a larger body (even before my Crohn’s diagnosis 20+ years ago). I workout daily and eat a balanced diet but have, like many, found a natural weight plateau. Since my bloodwork always looks great, I really hadn’t thought about it as it would be seemingly for vanity’s sake.”

With more than a dozen IBD surgeries so far and at least one or two more in the future, she was discussing with her GI wanting to optimize future success post-operatively, when her doctor brought it up.

“Since I carry more weight in my mid-section and currently have a loop ileostomy, which also is poorly placed and with a hernia that causes further projection, addressing those issues was certainly on my mind. I was open to learning more and she was bullish, referring me to a fellow GI doctor who specialized in the area.”

As an ostomate, Elizabeth was concerned about blockages, in addition to insurance not covering the cost.

“My consulting doctor felt confident I was a good candidate, and we both thought it may actually improve my fast GI tract and high-output ostomy (which had been causing daily leaks recently). While insurance denied two different options based on plan carve outs, even after appeals, I decided to try paying out of pocket.”

She started on Zepbound four months ago, in conjunction with her biologic and small molecule medication to manage her IBD. Elizabeth says she was less concerned about adding a medicine but, like many of us, would like to be on fewer longer term.

So far, she has lost 30 pounds or about 12% of her starting weight!

“I wasn’t at my highest all-time weight, but I had gained. The effect was almost immediate for me — with the biggest short-term (and continued) win being the delayed gastric emptying, meaning less liquid output, less rapid output, and less visits to the bathroom to empty. I also stopped having leak issues almost completely and, in conjunction with my IBD meds, my symptoms and inflammation are the best they’ve been in years.”

In terms of the non-IBD effects, the impact on what they call “food noise” was huge and, because food stayed in her stomach for more than an hour or two, her hunger changed dramatically.

“I can’t explain how odd it feels to have to remind yourself to eat and to simply feel full. Fortunately, I have had few side effects as, thanks to my ileostomy, I was already focused on staying hydrated.”

Elizabeth encourages those with IBD to research and consult with a doctor who specializes in obesity medicine (and versed in IBD and/or willing to work with your IBD team). Unlike many of the medications we use to control our disease, antibodies aren’t a concern, and it could be worth a try. Also, she says not to be discouraged if it doesn’t work for you as, just like IBD meds, what works for one person may not work for someone else.

“While the weight loss is great, the impact on my IBD-related quality of life has been just as important. I hope there is more research in this area and potential a path for these medications to be considered as part of a covered treatment plan for patients with IBD and other chronic conditions.”

What other IBD patients have to say

Thank you to those who submitted input for this article—there’s nothing like hearing firsthand perspectives from those living our reality. I have purposefully left all the quotes anonymous.

“I have been on Wegovy for over a year, and I have ulcerative colitis. I’ve had a positive experience and from what my GI told me, there are clinical trials going on for its effect on IBD patients specifically.”

“I started Ozempic last week. My GI approved it. There is lots of research about reducing inflammation, along with other benefits. I am way overweight, and I needed help.”

“I’m on semaglutide, which is the generic compound of Wegovy. My GI approved it and it’s been great. It’s the only way I’ve been able to lose weight in years! It has helped me with cravings, with blood sugar stability, and with my emotional connection to food. The first six weeks, I lost my interest in food and had a weird metal taste in my mouth. But slowly that went away and now I am back to myself but feeling more in control and with a healthier view of food. I have not lost weight as fast as some, more like 1-2 pounds a week with a plateau where we found the dosage needed to be increased. Slow and steady has been fine for me.”

“I have ulcerative colitis and got a jpouch back in 2010. I was on Ozempic last year but got off to get pregnant. Once I’m six months postpartum I was told I could go back on it.”

“My CRP is back to normal, even though my SED rate is still elevated, my IBD is non-existent. My constipation did get worse though. But it’s nothing that daily Miralax can’t help. I had to come off it because it made my anxiety worse. Being on that medicine made me as close to feeling like a normal human being as ever.”

“I have been on Ozempic for the past month. No lie, best I’ve felt in years! It’s taken my 20 bowel movements a day down to 3-4. I have nausea, but it’s tolerable. I don’t have diabetes, so I’m paying out of pocket for it. Those with diabetes get a greater benefit from it. You have to be serious about eating protein and about eating better. Since the food you eat sits in your stomach longer, you’ll feel sicker if you’re just eating junk.”

“I would love to hear more about this as IBD is one of the contra indications for this medication and is not usually prescribed in the UK for people with Crohn’s/ulcerative colitis, as it can cause GI upset. So, I would love to hear more about people’s experiences with this as this is something I have looked into for my weight, and I have Crohn’s.”

“My PCP said in her experience they have helped GI outcomes, but I haven’t talked with my GI to see his response. I will say, as an OR nurse, we have been seeing a lot of exploratory laparoscopic surgeries with patients on these medications.”

“I have UC and they put me on Ozempic last year! One shot and I couldn’t stop vomiting. I lost 35 pounds, but I had to take Zofran daily and used a Scopalamine patch so I would not vomit. I started in April, and I didn’t get better until July or August. I went into the ER and urgent care several times for dehydration. It was mild pancreatis, but my labs were not bad enough for them to admit me.”

“I was on Victoza! My GI symptoms were exacerbated by the medicine, but my A1C went down significantly. Unfortunately, I was throwing up for the first month I was on it and because of that my appetite was not suppressed.”

“I was on Ozempic. It made me nauseous and sick. I had terrible stomach pains and TMI, but super gross mucus-y stools. As soon as I stopped, everything went back to normal. I lost 20 pounds and then gained it all back immediately.”

“I have Crohn’s and I’ve been on Saxenda for 8 months and I’m down 20 pounds. Other than a little nausea in the beginning, it’s been great for me!”

“Started semiglutide injections 2 weeks ago and I’ve been able to stop taking my Loperamide completely (I have ulcerative colitis and a jpouch). Semiglutide wasn’t covered by insurance even with appeals for weight loss and motility, but I got it pretty affordable online through Henry Meds. I’m still on the loading doses but haven’t had side effects so far. It takes about 2-3 months of weekly injections to build up to a full dose.”

“I experience nausea day two after taking the shot. Other than that, I haven’t dealt with anything negative. I lost weight that wasn’t coming off due to hormones being completely screwed from pregnancy and 60 mg of prednisone for almost 9 months. GLP-1s also constipate you, due to your gut not emptying as quickly as it normally would. This is one of the reasons it’s being explored as an IBD option. Taking magnesium, bulking up on fiber or taking fiber helps with this.”

“I am on semeglutide week 6 tomorrow—this is my second time—I did it last summer for about 3 weeks. I went up on my dose last week, I haven’t noticed a difference with anything yet, but I haven’t changed my diet much and that’s on me. There’s no difference in my ulcerative colitis symptoms, I’ve had mild active uc for awhile now. I’m trying to get it under control, but also need to lose a bit of weight.”

“Back in 2022, I was on Mounjaro for about 8 months. I was finally able to lose weight. I am a Crohnie who gains weight because my body has a hard time digesting nutrients. Because of this, my body is in starvation mode a lot. When I was on Mounjaro, I lost about 80 pounds, and my inflammation was well managed. It was the first time I was able to feel energetic and wasn’t tired all the time. It helped with my diarrhea because it made me constipated for the first time in 5 years. It then became regulated. I still had stomach pains and indigestion issues, but overall, the medication improved my quality of life quite a bit. I am pre-diabetic and now my insurance will not cover it. My doctor tried appealing it many times, explaining that Mounjaro was helping to manage my inflammation caused by Crohn’s disease, and they still denied it. I have gained 30 pounds back and have a hard time with energy and my diarrhea has returned on and off.”

“I’m on Mounjaro and taking it specifically to help with my high output ostomy. I have Type 2 diabetes, so I’m able to get it through insurance luckily, since we’re using it “off label”. A friend of mine who has a jpouch was on Saxenda, then Ozempic, for the same reasons. She recently had to go off it because of new insurance and she developed pouchitis within weeks of having to stop it. I have two other friends with ostomies taking it, both with a history of Crohn’s. One is a CEO of a biotech company and has been chatting with the different GLP-1 manufacturers trying to convince them to do trials in patients with short gut or high output ostomies.”

“The first thing I asked my GI doctor is HOW can someone have IBD and be overweight or obese? And he said it’s quite common! When I started to flare, he wanted to blame the diarrhea on GLP-1 (Wegovy). But I asked him for a colonoscopy which showed active ulcerative colitis, unrelated to the medication. I am now on Zepbound. For some reason, these medications don’t help me lose weight. I can’t help but wonder if the inflammation from IBD is preventing successful weight loss. I can have many bowel movements a day and not lose a single pound!”

“I have had a good experience with it. I have a really tough time eating vegetables and some fruits, nuts, etc. because of my Crohn’s. The fact that the medication decreases that hunger helps me maintain a healthy weight. I tell people that all the “food noises” I used to experience are gone.”

“I am researching this for Crohn’s myself. I am interested to see your article and opinion. I’m in the UK and recently heard about the benefits of microdosing and I wanted to see if IBD people had experienced positives.”

“I was originally on Ozempic, and it wrecked my stomach. I had to take a break from it, but I lost weight. I switched to Mounjaro due to insurance and have had way better luck with no GI issues. Altogether, I have lost almost 50 pounds. I should mention that I am pre-diabetic. I have a really hard time losing weight. When I was pregnant, I lost 35 pounds after I gave birth and didn’t gain a pound during. I felt amazing, not sure why I wasn’t hungry when I was pregnant. Mounjaro has allowed me to not think about food 24/7. It’s been a game changer.”

“I’ve Googled it before (because who that’s overweight hasn’t been at least curious) and I remember reading that because it slows digestion it can help IBD patients. I’m still worried about the unknown long-term effects to try to it.”

Final thoughts

It’s important to understand that these are chronic medications for obesity management. GLP-1RAs are not a substitute but should be used in conjunction with lifestyle interventions including diet and exercise. This is necessary for sustained long-term weight loss. This requires a multi-disciplinary team-based approach with nutrition, weight loss specialist, primary care and your IBD provider. 

As you heard from the patient community, access and cost for these medications remains a key issue for many. The high cost and complex insurance landscape pose significant barriers for many patients seeking these treatments. The monthly cost of these drugs in the United States can range from several hundred dollars to over one thousand dollars, presenting a substantial financial burden for patients. Many insurance companies require prior authorization for GLP-1RA medications, necessitating extensive documentation and justification from healthcare providers. This process can be time-consuming, and as we’re all too familiar with, may delay treatment.

I’ll leave you with an impactful quote from Emily, “I think for the right person these meds are life changing. I know for me they have been. There is a lot of chatter on both sides, and I have learned to block it out. I work closely with my primary doctor and know that she would never steer me wrong. I also know that my GI is on board and that has helped, too. Don’t let the opinions of others deter you. If this is something you want to do and you have the support from your doctors that is all that matters!”

Additional Resources

Alimentary Pharmacology & Therapeutics | Pharmacology Journal | Wiley Online Library

GLP-1 based therapies and disease course of inflammatory bowel disease – eClinicalMedicine (thelancet.com)

The alleviating effect and mechanism of GLP-1 on ulcerative colitis – PMC (nih.gov)

Editorial: Pharmacotherapy for Obesity in Persons with Inflammatory Bowel Disease | Crohn’s & Colitis 360 | Oxford Academic (oup.com)

The Impact of GLP-1RA Use in Patients with IBD, with Priya Sehgal, MD, MPH (hcplive.com)

Why gastroenterologists and hepatologists should be involved in treating obesity – Mayo Clinic