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

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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Hydration and IBD: Why Summer Can Be More Complicated Than It Looks

As temperatures rise, so can the challenges of living with Crohn’s disease and ulcerative colitis. For people with inflammatory bowel disease (IBD), summer heat (and heat in general) isn’t just uncomfortable, it can amplify symptoms, increase dehydration risk, worsen fatigue, and make everyday activities feel far more difficult.

And while everyone is told to “drink more water” during the summer, hydration with IBD is often much more complicated than that. Living in St. Louis, I’m no stranger to extreme heat and humidity!

Between diarrhea, ostomies, inflammation, medication side effects, and nutrient absorption issues, those of us with IBD are already operating at a hydration deficit before stepping outside into 90-degree-plus weather. This week on Lights, Camera, Crohn’s a look at what patients need to know about staying safe, hydrated, and feeling their best during the hottest months of the year.

Why People With IBD Are More Vulnerable to Dehydration

Dehydration happens when your body loses more fluids than it takes in. While that can happen to anyone in the heat, people with IBD face unique risks.

Some of the biggest contributors include:

  • Frequent diarrhea
  • Active inflammation
  • Vomiting
  • Excessive sweating
  • Reduced appetite
  • Short bowel syndrome
  • Ileostomies or J-pouches
  • Certain medications
  • Avoiding fluids due to bathroom anxiety

For patients with Crohn’s disease affecting the small intestine, the body may also struggle to absorb fluids and electrolytes efficiently. Meanwhile, people living with an ostomy can lose significant amounts of sodium and fluids throughout the day, especially in extreme heat. The result? We can become dehydrated faster than we realize.

Signs of Dehydration Can Look Different in IBD

Many symptoms of dehydration overlap with symptoms those with IBD already experience regularly, which can make it harder to recognize when something is wrong.

Common warning signs include:

  • Dizziness or lightheadedness
  • Fatigue or weakness
  • Headaches
  • Muscle cramps
  • Dry mouth
  • Rapid heartbeat
  • Brain fog
  • Dark urine
  • Nausea
  • Increased GI symptoms

For some, dehydration can trigger a vicious cycle: diarrhea leads to fluid loss, dehydration worsens fatigue and weakness, and patients feel too sick to adequately rehydrate.

Why Water Alone May Not Be Enough

One of the biggest misconceptions about hydration is that drinking plain water is always sufficient.

In reality, many IBD patients lose electrolytes (especially sodium and potassium) along with fluids. Drinking large amounts of water without replacing electrolytes can sometimes leave us feeling even worse.

Electrolytes help the body:

  • regulate fluid balance
  • support muscle function
  • maintain blood pressure
  • keep nerves functioning properly

That’s why your gastroenterologist may recommend oral rehydration solutions or electrolyte drinks during flares, illness, travel, heat exposure, or high-output ostomy periods.

Be mindful that some sports drinks contain large amounts of sugar or artificial sweeteners that can aggravate symptoms. I’ve personally had luck with DripDrop and Liquid IV.

Summer Activities Can Add Another Layer of Stress

Summer doesn’t just bring heat; it brings logistical anxiety. Long car rides and flights for fun travel. Outdoor festivals. Pool days. Sporting events. Theme parks. Beach vacations. Going to parks with the kids that don’t have bathrooms. The list goes on and on. I know I feel extremely anxious every time I get on my in-law’s boat and just pray, I don’t run into any bathroom issues!

We often become hyper-aware of where bathrooms are located, whether they’ll have access to safe foods, and how quickly heat exhaustion could escalate symptoms. And unlike others, people with chronic illness often can’t simply “push through” dehydration or fatigue.

Medications Can Complicate Heat Tolerance

Certain medications commonly used in IBD management may affect how patients tolerate heat. Steroids can increase sweating and cause fluid shifts within your body, some medications can cause nausea (Zofran to the rescue!), and fatigue from chronic inflammation can worsen when temperatures rise (especially if you’re anemic)!

Tips for Staying Hydrated With IBD This Summer

While every patient is different, experts often recommend:

Hydrating Before You Feel Thirsty. Thirst can be a late sign of dehydration. Consistent hydration throughout the day is key. I make a point of making a water bottle for myself before I even have breakfast or my coffee each morning. As an IBD mom, we can get so busy taking care of everyone else that we can put eating and drinking on the backburner for ourselves.

Focus on Electrolytes During High-Risk Situations

Especially:

  • outdoor events
  • travel days
  • exercise
  • active flares
  • ostomy output increases
  • stomach illnesses

Carry “Safe” Hydration Options: Many people find certain drinks are easier to tolerate than others. Trial and error matters. What may help someone else, may not sit well with you.

Eat Hydrating Foods: Foods like watermelon, lettuce, celery, zucchini, bell peppers, cucumbers, broth-based soups, smoothies, and fruits can contribute to fluid intake. If you’re currently flaring or have active stricturing disease, talk with a registered dietitian about how to navigate this (ex. Cooking the veggies so they’re tender or chewing to applesauce consistency).

Be Careful with Alcohol and Excess Caffeine: Both can worsen dehydration for some people.

Watch for Heat Exhaustion: If symptoms escalate to severe dizziness, fainting, confusion, rapid heartbeat, or inability to keep fluids down, medical attention may be necessary. Be vigilant and proactive as best you can.

The Emotional Side of Summer With Chronic Illness

There’s also a mental load that comes with navigating summer while living with IBD.

Many of us want to participate fully in vacations, outings, and family activities, but may quietly spend the entire day navigating bathroom access, our energy levels, finding safe foods, and staying on medication schedules. That invisible planning can be exhausting.

And for parents with IBD, summer can feel even more physically demanding. I’m gearing up for that with my three kids! The combination of heat, disrupted routines, increased outdoor activities, and caring for children often leaves little room for rest and recovery. Now that my kids are 9, 7, and almost 5, I know that everyday doesn’t need to be an adventure and that low-key days at home can be just as fun for everyone, too. There’s all this hype about bringing back the 90’s summer. Listen to your body and if it means staying home and having the kids ride their bikes, run through the sprinkler, and have popsicles versus going to parks, pools, and amusement parks—that’s ok. Give yourself grace, your body will thank you!

The Bottom Line

Hydration isn’t just a wellness trend for people with IBD, it’s a critical part of symptom management and overall health and something to discuss with your care team.

As summer temperatures climb, patients may need to be more proactive about fluids, electrolytes, rest, and recognizing the early signs of dehydration. As always, listen to how your body speaks to you through symptoms and do your best to address those needs before they become an acute issue.

Because while summer is often portrayed as carefree, many people living with Crohn’s disease and ulcerative colitis are dealing with an entirely different reality behind the scenes: one that requires constant awareness, preparation, and self-advocacy just to feel well enough to participate.

News You Can Use

Electrolytes and Hydration for IBD: What You Need to Know — Stacey Collins Nutrition

The Connection Between Ulcerative Colitis and Dehydration

Inflammatory bowel disease (IBD): Staying hydrated – AGA GI Patient Center

Dehydration: How to Avoid It If You Have IBD

4 Ways To Avoid Dehydration and Balance Electrolytes With Crohn’s and Colitis | MyCrohnsAndColitisTeam

Out-of-Pocket Costs Nobody Warns You About With IBD

When most people hear about inflammatory bowel disease (IBD), they think about symptoms—abdominal pain, urgency, fatigue, flares. What they don’t think about? The financial toll.

Living with IBD, whether it’s Crohn’s disease or ulcerative colitis, comes with a lengthy list of out-of-pocket costs that rarely get discussed at diagnosis.

IBD patients experience 3 times higher healthcare-related work loss than non-IBD peers. And for many patients and families, those costs become a constant, underlying stressor that shapes daily decisions.

This week on Lights, Camera, Crohn’s a deep dive into the cost of living with IBD and why you’re not alone if financing your health is a constant concern.

Medications (Even When You’re Insured)

Biologics, immunosuppressants, steroids, you name it… IBD medications are often life-changing, but they’re also expensive. Before insurance comes into play it’s shocking when you hear how costly these medications are without coverage:

To break it down, without insurance, two auto-injector Humira pens cost an average of $10,782.36.

Without insurance, a Remicade infusion could cost you anywhere from $4,000-$7,000.

The list price of Skyrizi without insurance is approximately $32,566 per 150 mg injector pen, with variations depending on pharmacy and dosing method.

A 30-day supply of Rinvoq pills without insurance would cost between $7,000-$9,600, depending on dosage and pharmacy.

Without insurance, Stelara costs approximately $21,191 for a 45 mg syringe or $25,497 for a 90 mg syringe, with potential savings through discount programs and patient assistance.

… you get the idea.

And even with insurance, we deal with:

  • Monthly copays
  • Specialty pharmacy fees
  • Deductibles that reset every year
  • Prior authorization delays that interrupt treatment

And sometimes, the biggest cost isn’t financial, it’s physical and emotional when we’re forced to switch medications due to insurance, even when a medication is keeping our disease stable. There’s also the stress we face when switching employers and having to restart the process of getting coverage for our heavy-duty medications with a different insurance and specialty pharmacy.

 The Cost of Staying “Stable”

Routine monitoring is a non-negotiable part of IBD care. Annual lab tests, scans, and scopes add up.

This includes:

  • Bloodwork (often every 3-6 months and sometimes more depending on whether you’re flaring)
  • Stool tests
  • Colonoscopies and endoscopies
  • Imaging like MREs, CT scans, intestinal ultrasounds

These aren’t one-time expenses; they’re repeated regularly to track inflammation and prevent complications. And while they’re essential, they often come with recurring out-of-pocket costs that add up over time. Even after living with Crohn’s for nearly 21 years, it’s always a surprise how much my labs are going to cost. I try and get my colonoscopies in December before my deductible starts over at the start of the year.

Along with managing our disease with those costs, there are also the copays to see specialists to manage our care. A $40 copay to see a dermatologist, bone health doctor, ophthalmologist, primary care doctor, gynecologist…the list goes on, adds up quickly.

Travel, Parking, and Time Away

IBD care isn’t always close to home. My GI office is about 40 minutes away, compared to many people I know, that’s close by. Due to lack of access, many patients must travel to see specialists, infusion centers, or undergo procedures. That can mean:

  • Gas, tolls, and parking fees (I know some patients who take an airplane to appointments!)
  • Hotel stays for early morning procedures and out-of-state appointments
  • Time off work (for patients and caregivers)

These logistical costs are rarely acknowledged, but they’re part of the reality. There have been countless times through my patient journey when I’m stuck in traffic and resent the fact that I have to waste so much time just to manage my disease.

The Cost of “Safe” Food

Food is one of the most personal and frustrating parts of living with IBD.

There’s no one-size-fits-all diet, and many patients rely on trial and error to figure out what works. Often:

  • “Safe foods” can cost more
  • Specialty items aren’t always covered by assistance programs
  • What works one month may not work the next

The financial burden of constantly adapting your diet is real and ongoing. Working alongside a registered dietitian for nutritional guidance may or may not be covered by your insurance. Many insurers cover medical nutrition therapy for digestive diseases, so make sure to look into this.

The Everyday Essentials

Then there are the items no one puts on a medical bill, but every patient knows are necessary:

  • Extra toilet paper and wipes
  • Heating pads
  • Backup clothes and supplies for emergencies
  • Over-the-counter medications and supplements
  • The cost of colonoscopy prep (buying clear liquids, Miralax/Dulcolax, SUTAB pill prep is about $50 depending on insurance, etc.)

Individually, they may seem small. Together, they’re part of the cost of living with IBD every single day.

The Hidden Cost of Missed Work

IBD doesn’t follow a schedule. Flares, fatigue, appointments, and recovery time can all impact a person’s ability to work consistently. That might look like:

  • Missed work days
  • Reduced hours
  • Limited career flexibility
  • Lost income over time

For many, this is one of the most significant and least visible financial burdens. After my bowel resection surgery, I had to be on short-term disability for 2 months which was only 60% of my salary.

Mental Health Support

The emotional weight of IBD is just as real as the physical symptoms.

Therapy, stress management tools, and mental health support can be critical for coping, but they’re not always fully covered by insurance. Many patients pay out-of-pocket for care that helps them navigate:

  • Anxiety around flares
  • Medical trauma
  • The daily uncertainty of chronic illness

For many of us, this is not optional, it’s part of comprehensive care.

Even in Remission, the Costs Don’t Disappear

One of the biggest misconceptions about IBD is that remission means everything goes back to normal. But financially, that’s rarely the case.

Even in remission, patients are still:

  • Taking medications
  • Attending regular appointments
  • Monitoring for signs of inflammation
  • Planning for the unexpected

The disease may be quiet, but the costs are not. As chronic illness patients, we know how delicate our remission is and that on any given day we can be back in a hospital bed trying to navigate an obstacle that wasn’t on our radar a week prior.

Why We Need to Talk About This More

The financial burden of IBD is often invisible, but it affects real-life decisions every day:

  • Can I afford this medication?
  • Should I delay this test?
  • Is it worth taking time off work for this appointment?

These aren’t just healthcare questions, they’re quality-of-life questions. Often, we can feel like a burden to our partner and our family as the medical bills come in, with no end in sight.

And until we talk more openly about the economic impact of chronic illness, patients will continue to carry this weight quietly.

What Can We Do About It?

  • Ask about patient assistance programs
    Many drug manufacturers offer copay cards or financial aid.
  • Request itemized bills
    Errors happen more often than you think and can be corrected.
  • Talk to your care team about costs
    Doctors can sometimes adjust testing frequency or suggest alternatives.
  • Time big procedures strategically
    If possible, schedule costly tests after hitting your deductible.
  • Use HSA/FSA accounts if available
    These can help offset out-of-pocket expenses with pre-tax dollars.
  • Don’t skip mental health support—ask about coverage options
    Some therapists offer sliding scale fees.

Final Thoughts

IBD is more than a diagnosis. It’s more than symptoms. It’s a lifelong condition that comes with physical, emotional, and financial layers, many of which no one warns you about. But acknowledging those realities doesn’t make patients weak. It makes the conversation more honest. And that’s where change begins.

More Information:

4 Tips for When Insurance Doesn’t Cover Your Medication – GoodRx

How to save money on prescription medication: 13 tips

The Cost of Inflammatory Bowel Disease Care: How to Make it Sustainable – Clinical Gastroenterology and Hepatology

AGA-Economic-Burden-Infographic.pdf

The economic burden of inflammatory bowel disease – The Lancet Gastroenterology & Hepatology

Managing inflammatory bowel disease: what to do when the best is unaffordable? – The Lancet Gastroenterology & Hepatology

Global, regional, and national burden of inflammatory bowel disease from 1990 to 2021: findings from the Global Burden of Disease 2021 | Gastroenterology Report | Oxford Academic

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

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

Magnesium Deficiency in IBD Patients and the Role of Natural Support

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.”

Screenshot

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.

Revolutionizing IBD Care: Introducing the Nutrition Navigator™ – A Personalized Tool for Empowered Healing

There’s a BIG advancement that was just unveiled this week regarding nutrition and IBD. Nutritional Therapy for IBD, a non-profit dedicated to improving the lives and health outcomes of patients with Crohn’s disease and ulcerative colitis through evidence-based adjunctive nutritional therapy, launched their The IBD Nutrition Navigator to the public yesterday. 

It’s a project that’s been in the works for two years and it’s the first nutritional tool of its kind! This FREE resource allows patients, caregivers, and healthcare professionals to work together to find the best nutritional approach on a personal level. This week on Lights, Camera, Crohn’s we hear from Kim S. Beall, Pharm. D., co-founder of Nutritional Therapy for IBD and Dr. Ashwin N. Ananthakrishnan MD, MPH, FACG, AGAF. These two, in collaboration with dozens of healthcare providers, designers, patients and volunteers, made this resource a reality for the IBD community.

What is the Nutrition Navigator?

The design was led by Dr. Ananthakrishnan, Harvard graduate, Director of the Crohn’s and Colitis Center at Massachusetts General Hospital and one of the top GI clinicians. 

“The IBD Nutrition Navigatoris a groundbreaking algorithm-based tool designed to assist healthcare providers and patients in determining a personalized approach to using nutritional therapy alongside medication to optimize care,” he says.

“The tool is based on discussions that Dr. Ananthakrishnan has with his patients about nutrition and how it can be used in conjunction with medications and surgery to improve health outcomes. The IBD Nutrition Navigator is interactive and walks providers and patients step by step through six questions to assess not only the patient’s individual disease state and goals but also their interest in resources for nutritional therapy,” explains Kim.

The tool is designed for healthcare providers and patients to use together in shared decision making.  Once completed, the tool recommends the best fit for an evidence based nutritional therapy. These recommendations are geared 100% to the individual based on how they answer the questions. As we all know, there is not a one-size-fits-all answer when it comes to IBD nutrition, and the recommendation is never nutrition vs medication. It’s using nutrition as another tool alongside medication and other therapies. 

The inspiration behind the IBD Nutrition Navigator

Dr. Ananthakrishnan, an esteemed member of Nutritional Therapy for IBD’s medical advisor board, is the inspiration behind the IBD Nutrition Navigator

“He discusses nutrition with his patients and uses nutritional therapy alongside medication as part of his regular practice. “What should I eat?” is the most common question for patients after an IBD diagnosis. But because every patient is different, there is not a “one size fits all” answer to that question,” says Kim. “Weeding through the abundance of nutrition information available can be confusing and time-consuming. Dr. Ananthakrishnan felt that we should provide more guidance to healthcare professionals in a simple, evidence-based, clinical manner. And thus, the idea for the IBD Nutrition Navigator was born.”

A closer look at nutrition and IBD

Nutritional therapies used alongside medication and/or surgery can help manage symptoms, aid healing, and reduce inflammation in IBD patients. 

“For a long time, it was thought that diet didn’t even matter when it comes to managing IBD. We now have growing evidence that suggests that food does indeed matter as both a risk factor and a therapeutic option,” says Kim. “Patients struggle, however, with the abundance of nutritional information AND misinformation available. They may want to incorporate nutrition into their IBD management but don’t know where to start.”

Another very prevalent struggle is malnutrition. Patients are often afraid to eat new or certain foods for fear that those foods may cause pain or other symptoms. I know in my nearly 20 years living with Crohn’s disease I was considered malnourished during my initial diagnosis and hospitalization and was watched closely when I was losing weight unintentionally prior to acute flares in the past.

At a baseball game with my brother days before my Crohn’s disease diagnosis in 2005. Little did I know I was malnourished here.

Cool features of the IBD Nutrition Navigator to highlight

Years of planning went into the development of the IBD Nutrition Navigator’s clinical algorithm, so the information you will find on the tool is all evidence-based and thoroughly reviewed by medical advisors. 

“There are so many thoughtful features of this practical tool. First, while the development of the IBD Nutrition Navigator was quite complex, the result is a very straightforward, simple-to-use, interactive questionnaire. Because the tool is so concise, it can be easily used during a regular appointment with a healthcare provider. Two of the six questions gauge the patient’s interest and resources in using nutritional therapy. These questions evaluating the feasibility of and readiness for change are what makes the tool particularly unique and comprehensive. As patients and healthcare providers progress through the IBD Nutrition Navigator, the suggested nutritional approaches appear on the screen and will adjust in real time. You can see how your answers to the questions may modify the dietary options.” says Kim.

Finally, once the recommended nutritional approach is selected, there are links to extensive resources from Nutritional Therapy with IBD to help you learn about incorporating that approach and even a recipe database with diet-specific dishes.

Tips for taking the information learned and discussing it with a registered dietitian/GI

The IBD Nutrition Navigator is designed to facilitate nutrition conversations between patients and healthcare providers, including registered dietitians who play a significant role in this process. 

“Before using the tool, patients and healthcare providers must acknowledge that a full clinical assessment—including screening for malnutrition and eating disorders—is the necessary first step. The addition of or changes to nutritional therapy should always be made through shared decision-making between the patient and healthcare provider,” adds Kim. 

Patients or caregivers interested in nutritional therapy can print this flyer to take to their provider.  The QR code provides a link to Nutritional Therapy for IBD’s website where you will find the IBD Nutrition Navigator and many other evidence-based nutritional resources.

Final Thoughts

The IBD Nutrition Navigator aims to provide healthcare professionals and patients with a tool that helps us choose the right, individualized nutritional therapy to use alongside medication and/or surgery and optimize care. Once you discover the best nutritional fit, patients can gain confidence in their food choices and ultimately improve their overall health and healing. 

I wish when I was diagnosed with Crohn’s in 2005 that I had a tool like this at my fingertips. A dietitian (who was not well-versed on IBD) told me I would never eat raw fruit or vegetables again and it felt like doomsday. I was overwhelmed, and at age 21, days after being given a chronic illness diagnosis, that advice devastated me. Our community is incredibly fortunate to have a tool like this so we can feel more in control and more empowered to make appropriate dietary changes that are personalized to our care and tailored to fit our ever-changing treatment plan. In addition to the IBD Nutrition Navigator, this volunteer-led organization provides a wealth of information and resources about nutrition and IBD on its website. Click here to learn more. 

How to get involved with the IBD Kids Club: A Safe Haven for Families Battling IBD

Nothing prepares you to hear that your child has Inflammatory Bowel Disease. For many, it’s the first time ever learning about what the weight of those words even means. Not only is a chronic illness at a young age an incredibly heavy burden to bear, it can feel isolating to not only the patient but the caregiver. This inspired The University of Chicago to launch the IBD Kids Club in February 2024. This week on Lights, Camera, Crohn’s learn more about how you can connect with others living your reality and find community, regardless of where you live.

Recognizing the need

Dr. Amelia Kellar, MD, MSc, FRCPC, Assistant Professor of Pediatrics, Director, Pediatric Intestinal Ultrasound University of Chicago Medicine/Comer Children’s Hospital says one of the most common concerns she hears from patients and their families is that they don’t know anyone else with IBD or where to go for support.

“I always refer my patients to Crohn’s and Colitis Foundation, but this also inspired me to create a community for these kiddos more locally…a place where they could authentically meet one another both virtually and in person, and know they are not alone.”

Dr. Kellar wants her patients to see kids who are older than them doing all the things they aspire to do and have examples of adults who are living and thriving with IBD. So far, the feedback has been extremely positive—families are grateful to meet one another where there’s no need to explain and there’s comfort in shared experiences.

Get connected to the IBD Kids Club

The group meets virtually every 2nd Tuesday of the month on Zoom at 6 pm CT. Dr. Kellar says it is tough to find a time that works for everyone, but she’s found the dinner hour allows for kids and parents to join together and chat. The next meeting is Tuesday, December 10th.

 “I feel very fortunate as I have a great team of GI docs, nurses, dieticians and psychologists that join for different sessions and I co-lead with one of our adult IBD nurses who is also a counselor at Camp Oasis and openly talks to the group about her diagnosis of UC and journey through J-pouch surgery,” says Dr. Kellar.

When she started the group, Dr. Kellar polled participants for what they would like the group to be, whether they wanted to simply chat with one another and offer support, whether they wanted some guest speakers on topics or in person events… and they indicated they wanted a mix, so they have had some support/chat sessions, some guest speakers, and a live cooking class with their IBD dietician. There has not been an in-person event yet. I let Dr. Kellar know in the months ahead I would love to join one of the calls, meet the families, and share experiences.

Everyone is welcome

Dr. Kellar is looking to get the word out—and wants all pediatric IBD warriors and their caregivers to know they are welcome to join.

“I want this group to be open to everyone—regardless of where you live or where you receive care. I want the IBD community to know they are not alone. We talk a lot about how every single person in the world has something that is challenging and that they may or may not choose to share with others and you would never know when you see someone at school, work, on the street, what challenges they might be facing. At the same time, finding people who have faced or are facing similar challenges can offer a unique support system. Our hope is that this group unites children and families with IBD and fosters connections, friendships, and support so no one ever feels alone with their challenges,” says Dr. Kellar.

Interested in learning more? Contact ibdkidsclub@bsd.uchicago.edu.

Navigating Health Trends with IBD: Why Caution is Key

For those living with Inflammatory Bowel Disease (IBD), the pursuit of better health often extends beyond medications and doctor visits. As someone who has lived with Crohn’s for more than 19 years, I’m aware that lifestyle plays a significant role in how we manage our disease. That being said—many people are drawn to popular health trends that promise improved digestion, immune support, and overall wellness. Everywhere we look we see posts on social media promising the next best thing for us. However, some of these trends, though appealing, may pose risks for those with sensitive digestive systems and compromised immune systems. This week on Lights, Camera, Crohn’s, we look at why it’s important to be wary of popular remedies and hear advice from Dr. Neilanjan Nandi, MD, FACG, AGAF, FACP, a well-respected gastroenterologist from Penn Medicine who specializes in Crohn’s disease and ulcerative colitis.

Holistic practices in the IBD community and beyond

There’s a lot of talk about holistic practices in the IBD community (Raw Milk, Amra/Bovine Colostrum, Digestive Enzymes, Athletic Greens, Homemade Kombucha)–the list goes on… while people may have “success” stories or swear by the benefits, it’s important to talk with your healthcare provider first.

“For patients on immunosuppressants, I would caution against consuming raw milk due to the concern for lack of pasteurization. There are often significant heavy bacterial loads and infectious organisms that may behave poorly in a patient’s digestive system and cause infections and subsequent flares too. Fermented products are certainly not contraindicated but I would caution patients in overdoing ‘too much’ and taking many different types of fermented products as it may cause excess gas,” says Dr. Nandi.

DeBalko Photo

He recommends people with IBD stick with one option and it if provides benefit then you can consider continuing.

“However, if a person sees no benefit after 6 weeks, then stop or change. Supplements like Athletic Greens may help patients get in more nutrients and fiber than they otherwise would, but this might also reflect that a patient is not getting enough nutritional balance, so they are favoring this product to achieve that need. Instead, I would rather encourage patients to work with a dietitian who can provide them with more insight and a balanced nutrition plan where they can get their vitamins and minerals in a whole food package rather than a processed formula. Also, there is no data to support that the product provides benefit in IBD and may be a costly option too,” he says.

Why the IBD community needs to be a bit more skeptical

Many supplements lack benefit and/or evidence to provide healing or relief. Many may be minimal risk and possible benefit but this risk to benefit ratio is quite low for the majority of such supplements.

“The greatest risk to the IBD patient is more financial as they are often costly and IBD patients generally have more than enough bills to manage. The other reason for concern is that some supplements may have a small risk for hepatotoxicity or other rare adverse events that may not be predictable. While herbal teas and plant-based products may appear safe, I always recommend informing your personal physician if starting a supplement and they can decide if a conservative approach to monitoring may be more appropriate,” explains Dr. Nandi.

A closer look at the “trends”

  • Raw Milk—While this is nutrient rich it doesn’t come without its risks. Unpasteurized milk has natural nutrients, probiotics, and enzymes that are believed to aid digestion and immunity. However, the lack of pasteurization also means that harmful bacteria like E. coli, Salmonella, and Listeria can be present, posing significant risks. For those with IBD, it’s common for us to have an immune system that is already compromised or a gut lining that is inflamed or damaged. This puts us at greater risk for bacterial infections. An infection from contaminated raw milk can lead to severe gastrointestinal symptoms, including diarrhea, cramping, and even serious complications that can exacerbate IBD flare-ups. While raw milk may seem appealing for its benefits, its risks far outweigh potential gains for those with IBD. Pasteurized milk or dairy alternatives are much safer options.
  • Bovine Colostrum—This is the first milk produced by cows after giving birth, it’s rich in antibodies, growth factors, and immune-boosting nutrients. It’s marketed as a supplement that can heal the gut, reduce inflammation, and improve immunity. Some studies suggest that colostrum may benefit those with gastrointestinal issues by promoting gut repair and reducing intestinal permeability. However, research on its effectiveness for IBD is limited, and not all individuals with Crohn’s or ulcerative colitis may respond well. There’s also the potential for allergic reactions, especially for those who are sensitive to dairy. Additionally, its effects on a highly inflamed or damaged gut are not well understood. While bovine colostrum shows potential for gut health, more research is needed to confirm its safety and efficacy in people with IBD. Always consult with a healthcare provider before adding it to your routine.
  • Digestive Enzymes—These are often recommended to support digestion, especially for those with conditions that impair enzyme production. They can help break down food, alleviate bloating, and promote nutrient absorption. For some people with IBD, especially those with enzyme deficiencies or malabsorption issues, these supplements may provide relief. However, not all enzyme formulations are created equal, and taking the wrong type or dose can lead to side effects like diarrhea, cramping, or worsen digestive symptoms. In addition, over-reliance on these supplements can mask underlying issues that need medical treatment. Digestive enzymes may offer benefits for those with IBD, but they should be used under the guidance of a healthcare professional to ensure they are appropriate for your specific needs.
  • Athletic Greens—This is a popular green superfood supplement packed with vitamins, minerals, probiotics, and other nutrients. It’s marketed to boost energy, support digestion, and fill nutrient gaps. While this may seem like a convenient way to enhance your diet, those with IBD should be cautious. First, the high fiber content and presence of various herbal extracts may not agree with everyone. Some ingredients could irritate the gut or trigger symptoms in sensitive individuals. Additionally, people with IBD often have individualized nutrient needs, and a one-size-fits-all supplement may not address these properly. For example, certain vitamins and minerals may be needed in specific dosages, which Athletic Greens may not provide. While Athletic Greens can seem like an easy nutritional boost, people with IBD should be cautious due to its fiber and herbal content, and instead, focus on personalized nutrition guided by a healthcare provider.
  • Homemade Kombucha—This is a fermented tea that’s often praised for its probiotic components, which are beneficial to support gut health. Many people with digestive issues turn to kombucha for its potential to improve digestion and balance gut bacteria. However, homemade kombucha can be unpredictable, with variable levels of fermentation and alcohol content. For those with IBD, who often have a more sensitive gut environment, kombucha’s acidity and potential for bacterial overgrowth or contamination can worsen symptoms like bloating, diarrhea, and cramping. There is also a risk of introducing harmful pathogens during the fermentation process if not done carefully. Store-bought kombucha from a reliable source is a safer option, but even then, it should be consumed in moderation by those with IBD.

Not all health influencers are created alike

When you feel desperate to try something that could improve your quality of life, you may be willing to do whatever it takes to feel better. But please remember that not all health influencers and people on social media are created alike and many have an agenda or profit motive.

“I have often found that the most ‘popular’ products are being promoted by influencers who participate in affiliate marketing and receive a financial incentive if their followers purchase with their referral code. One should always be weary of this and question the intent behind this approach. When in doubt, ask your doctor about the product and always do your own research, if possible,” Dr. Nandi advises.

What to know before you try

Gastroenterologists are trained to look for medication interactions and understand how to conduct literature searches in publication databases that are not always accessible to the public.

“Physicians are more up to date than most online influencers and can at least provide clinical support should a complication occur because of the supplement. The widespread use of electronic medical records for patients to converse with their medical team through secure messaging also provides patients an opportunity to ‘cut and paste’ weblinks to potential therapies and/or supplements to their physicians. This way the clinician can review the same page and provide a prompt medical opinion,” he says.

A look at the future

Dr. Nandi says some exciting supplements are on the market now. One in particular is called Qing Dai, which may be helpful in ulcerative colitis shown in small placebo-controlled studies. The pharmaceutical industry is elucidating this pathway, too.

“More data is required to study the effect in large scale trials. Even this exciting supplement may benefit from laboratory and clinical supervision to ensure patient safety,” says Dr. Nandi.

With the growing popularity of wellness trends, it’s easy to be tempted by promises of better health and healing. However, for those with IBD, not all health trends are created equal, and some may pose significant risks to gut health. It’s always crucial to approach new supplements or diets with caution, especially when you’re managing a complex condition like IBD.

I personally get approached all the time to try a new or different supplement and I’m always hesitant to rock the boat or put something into my body that I don’t know much about. Just as we are forced to advocate for ourselves in the healthcare system, we also need to be cognizant that unfortunately not everyone has our best interest in mind when it comes to making a profit from our pain. Just like diet and medication—there is not a one size fits all approach to wrangle IBD. Just because your healthy friend who added raw milk into her diet swears by the benefits, doesn’t mean it’s right for you. People may genuinely be trying to help you but stay informed and be cautious. This especially goes for newly diagnosed patients and caregivers who may be grabbing at straws trying to improve the reality of life with IBD.

Before trying any new health trend, it’s important to consult with your healthcare team, including your gastroenterologist and IBD nutritionist, to ensure the approach is safe and appropriate for your specific health needs. What works for the general population may not necessarily be beneficial—or even safe—for those living with IBD.

How GI Symptoms Influence Food Choices in IBD Patients & Strategies for Managing Pain, Bloating, and Nutrient Intake

Imagine in a quick twist of events you go from having a wonderful day to dealing with IBD symptoms. Suddenly you go from feeling “fine” to having pain that’s gotten your attention quickly. You’re bloated and could pass for being 5 months pregnant, nothing sounds appetizing, you’re scared eating or drinking will further exacerbate your symptoms. The mere thought of ingesting anything makes you a bit nauseous. All your attention and focus is on tolerating the pain. Now pause. 

It’s no surprise these symptoms significantly impact food choices and nutrient intake, as we’re forced to navigate the delicate balance between managing discomfort and maintaining proper nutrition. Understanding how GI symptoms influence dietary decisions and implementing strategies for managing these symptoms is crucial for IBD patients to ensure overall well-being.

Even as a veteran Crohn’s patient of nearly 20 years, I’ve been struggling to manage my diet while living with unpredictable painful symptoms that started to arise when I was put on a biosimilar medication in July 2024. I’ll be honest, lately when I’ve been dealing with abdominal pain and bloating, I’ve been refraining from eating. Turns out—surprise, surprise… that’s the last thing any of us should be doing. This week on Lights, Camera, Crohn’s hear from trusted registered IBD dietitian and ulcerative colitis patient extraordinaire, Stacey Collins, about how we can better navigate these challenges. 

How have GI symptoms influenced your food choices?

If you’re in an active disease flare and dealing with an inflammatory response, you need protein and calories to overcome any risks for malnutrition. So how can we go about getting enough calories?

“Liquid calories aren’t always the tastiest—but smoothies and even nutrition shakes can be beneficial for those dealing with IBD symptoms and teetering on the line of a full-on flare. When you’re feeling well, try to designate part of one day a week where you make soups and smoothies ahead of time that you can freeze as a rainy-day investment to help you out on days when you aren’t able to expend the energy to prepare food,” says Stacey.

She also suggests “taking a holiday” from gut-health supplements you take—it’s not all or nothing. Take a break from your probiotic, prebiotic, anything that “helps with inflammation,” and enzymes (unless prescribed by your physician explicitly), and let your body relax from the burden of taking too many supplements.

Rather than avoiding eating altogether, which feels like the right thing to do when you’re in discomfort, try to maintain a consistent routine of eating to nourish your body to heal from a flare and avoid excess discomfort.

Our hypersensitive guts

When you live with IBD and you have a history of inflammation, visceral hypersensitivity, or an increased pain perception in the bowel, is a key factor to take into consideration. 

“Acknowledge that a smoke alarm is going off, and then try deep belly breathing if that’s an accessible movement for you. I often tell people to lay down on the floor. If you have children, invite them to join! They can lay down beside you and do this exercise with you. Together, you can select a favorite toy or teddy bear: one for you and one for themselves. Put the bear on your belly and BREATHE! You should see the teddy bear move with your inhale as you breathe deep into your belly–see who can make the teddy bear go the highest. This can help you to return to your breath and welcome a sense of calm into your body. If this isn’t a great option for you, pausing to notice the exhale portion of your breath, intentionally making it a bit longer than the inhale, can be impactful in helping to calm the nervous system,” explains Stacey. “Clinically everything may be checking out okay with lab work, scans, and scopes, but it’s important to recognize if you’re dealing with pain, not everything is right. It can feel disorienting to not have that pain validated by labs and tests, which is why cultivating tools like these can be helpful to ride the waves of the pain while feeling just a little bit better in your body.”

When I decided to have soup last week after not eating all day, I was really taken aback by my abnormally loud bowel sounds while I was digesting. Stacey reminded me that when you go a long time without eating and then choose to eat something, that your gut will be working extra hard. This can lead to loud bowel sounds or Borborygmi. Anyone, including people with IBD, can experience hyperactive bowel sounds. When I heard my abnormally loud bowel noises the other day, it brought me back to past bowel obstructions where I would eat and people could hear my stomach making sounds in the other room.

What’s the deal with bloating?

Bloating in Crohn’s disease or ulcerative colitis is often caused by a combination of factors related to the underlying inflammation and the altered digestive processes associated with the disease. Some key factors include:

  • Inflammation of the Gut: The intestinal lining disrupts normal digestion and absorption of food. When the gut is inflamed, depending on location and severity, it can lead to malabsorption, causing undigested food particles to remain in the intestines longer, which can increase gas production and bloating.
  • Altered Gut Motility: Inflammation can impair the muscles in the intestinal walls that are responsible for moving food through the digestive tract. Slowed or irregular gut motility leads to delayed digestion and fermentation of food by gut bacteria, which can result in gas buildup and bloating.
  • Imbalance of Gut Bacteria (Dysbiosis): People with IBD often have an imbalance in their gut microbiome (dysbiosis), meaning there are fewer beneficial bacteria and more harmful bacteria. This imbalance can lead to increased fermentation of carbohydrates in the colon, producing excess gas, which contributes to bloating. Not getting enough nutrition can make dysbiosis worse. 
  • Intestinal Gas Accumulation and Stool Burden: Inflammation in IBD can slow down the passage of gas through the intestines. This causes gas to accumulate in the gut, leading to bloating and discomfort.
  • Small Intestinal Bacterial Overgrowth (SIBO): SIBO, a condition where excessive bacteria grow in the small intestine, is more common in IBD patients who are not in clinical remission. This bacterial overgrowth can cause excessive fermentation of food, leading to bloating, gas, and diarrhea.
  • Dietary Factors: Certain foods, such as those high types of carbohydrates called Fermentable Oligo-Di-Monosaccharides and Polyols (FODMAPs), can sometimes be uncomfortable to digest and may temporarily need to be eliminated from the diet to help with bloating. Most often, this occurs in active Irritable Bowel Syndrome (IBS) flares.
    • If IBD is in clinical remission but you’re experiencing IBS-symptom overlap, you may benefit from identifying FODMAP triggers with a dietitian. Re-introduction is an important phase of FODMAP-trigger identification, because these foods are often rich in pre-biotics, which are beneficial for the gut microbiome.
      • Note: A low-FODMAP diet will not impact IBD-related inflammation. However, it may help with alleviation of symptoms. This diet is meant to be short-term and with the support of a registered dietitian.
    • Other dietary factors: sugar alcohols, chewing gum, carbonated beverages, sugar-sweetened beverages may also contribute to gas and bloating.
  • Food Intolerances: Food intolerances in IBD have not been studied adequately, but the most common food intolerance in IBD is lactose, where there’s a lack of enzyme available to help break down the lactose sugar, resulting in gas production and bloating. IBD patients can develop intolerances to certain foods, such as lactose, gluten, or high-fiber foods, which can trigger bloating. The gut’s reduced capacity to break down these components can result in gas production and bloating.
  • Inflammatory Strictures and Obstructions: Chronic inflammation can lead to scar tissue formation (strictures) that narrows parts of the intestines. This can cause a buildup of food and gas behind the narrow areas, resulting in bloating and abdominal discomfort. Discuss a monitoring strategy with your GI care team to ensure that you are not at risk for these complications.
  • Abdomino-phrenic dyssynergia (APD): this occurs when the diaphragm and abdominal muscles do not coordinate appropriately, which can lead to bloating, distention, constipation, and pain. Bloating may worsen throughout the day, even without food. Pelvic floor physical therapists (PFPT) can help evaluate and treat a person with APD.
  • Medications: Some medications used to manage IBD may contribute to bloating by altering the gut microbiome or affecting digestive motility.

Bloating can also be a result of constipation, but this certainly doesn’t feel like it makes sense when we’re going to the bathroom multiple times a day. 

“This [urgency] can happen as a result of overflow diarrhea, when stool actually moves around more solid stool within our intestines, agitating the nerves and muscles, until there is a complete evacuation of all stool,” Stacey explains. (source)

Addressing symptom alleviation related to bloating typically requires a combination of anti-inflammatory treatments, dietary modifications (including hydration), gentle movement, behavioral modification techniques, and, in some cases, probiotics and/or antibiotics to rebalance the gut microbiome. I’ve found not wearing a tight waistband or anything that buttons at the waist can help reduce bloating. Whenever I wear Spanx, I usually end up feeling bloated. 

A day in the life

I asked Stacey to walk us through a practice menu for making dietary choices to stay nourished when your IBD symptoms are getting in the way:

Practice menu
Note: this is not prescriptive; these are just some ideas. The key takeaway is to aim for consistent nourishment throughout the day in active disease flares, choosing nutrient-rich foods that will support you through a hard day. Work with a dietitian for personalization! No 2 diets necessarily look the same; no 2 days look the same.

Breakfast

  • Low-fat Greek yogurt that’s low in lactose, which is usually gentle on the gut and rich in protein, probiotics and bone health minerals. Add in some mashed raspberries and bananas with a nut or seed butter
  • Oatmeal—keep it simple, instant is fine. You can add a drizzle of olive oil to make it savory with additional omega-9 fatty acids for powerful anti-inflammatory support, soft boiled eggs, avocado, with a dash of thyme. 
    • If you simply can’t get over the idea of a savory oatmeal, just add some nut or seed butter and swirl it altogether with banana or applesauce and cinnamon
  • Smoothie: a liquid base, some frozen fruits (1 Cup or less at a time), and handful of greens, and a 3rd party-tested protein supplement may be a comfortable way to start the day, sipping slowly and gently

Lunch

  • cooked down starches, like squash, zucchini, cooked-down until fork-tender
    • you can recycle these starches by adding them into a sandwich on sourdough, using tahini as a savory spread that will provide you with even more nutrition
  • Salmon is easy to digest while providing a rich source of omega 3’s
  • a nice pesto sauce to drizzle over the salmon would be delicious and rich in calories, perfect when you need additional nutrition and are feeling low on energy

Or, for something much simpler:

  • never, ever underestimate the power of a pb + j 
  • a side of salty, simple-ingredient potato chips can replace any lost by diarrhea if you’re having an especially symptomatic day that causes you to make more bathroom trips

Dinner

  • Rotisserie chicken (you can buy this directly from the grocer- no cooking required!)
    • you can recycle leftovers into chicken salad to be used as a protein-rich spread for lunches or snacks
  • Roasted potatoes, or potato soup (made in a slow-cooker for easy prep and clean-up!)
  • Cooked green beans or carrots. (If lacking energy, throw some veggies in the slow cooker with broth for extra nutrition)

Snack ideas:

  • peeled, salty edamame
  • Hummus, cucumber and pita for dipping (can opt to peel cucumber if that feels better for you)
  • Hummus, tahini, or guac on a tortilla, roll up some rotisserie chicken 
  • Avocado toast (cheers, Millennials!) 
  • Maybe pour yourself a cup of peppermint tea (unless you also deal with acid reflux)- this could give you some bloat relief, too!

Here’s more food ideas!

Identifying the triggers

Many IBD patients identify certain foods that trigger symptoms like bloating, cramping, or diarrhea. For example:

  • High-fiber foods: If too many are added at once, this can exacerbate bloating or diarrhea, leading many patients to avoid whole grains, raw vegetables, and legumes.
  • Dairy products: Due to lactose intolerance, some individuals avoid milk and all dairy foods. 
  • Fried and fatty foods: These foods may slow digestion, causing discomfort or worsening symptoms.

The tendency to avoid certain food groups can result in nutrient deficiencies, especially if entire categories like fiber, fats, carbs, or dairy are removed from the diet. The unpredictability of IBD flare-ups can make patients apprehensive about eating. They may opt for bland or easily digestible foods, limiting their variety and nutritional intake. While this might offer temporary relief, it may not provide all the necessary nutrients, leading to long-term health complications such as malnutrition, weight loss, or vitamin deficiencies (e.g., vitamin D, B12, iron), or a poor food-related quality of life. 

Tips for Managing Pain and Bloating While Ensuring Proper Nutrition

  • Work with a Dietitian: IBD patients should work with a registered dietitian, preferably one who specializes in gastrointestinal disorders. A personalized diet plan and support can help patients identify trigger foods, balance nutrient intake, and minimize symptom flare-ups.
  • Small, Frequent Meals: Eating smaller, more frequent meals can help reduce bloating and cramping. By spreading out food intake throughout the day, the digestive system may be less overwhelmed, potentially alleviating pain and bloating while allowing for better nutrient absorption. Reach for simple ingredients.
  • Eat mindfully in a relaxed environment: chew thoroughly, allowing more time for enzymes in the mouth to aid in digestion, so food is more comfortable to digest as it travels down the GI tract. Mindful eating is also associated with 
  • Cooked and Pureed Vegetables: For patients struggling with fiber tolerance, switching from raw to cooked or pureed vegetables can provide some of the essential nutrients from vegetables without causing additional bloating or pain. Cooking helps break down the fiber, making it easier to digest. When in doubt, aim for “fork-tender” fruits and vegetables if you’re in a flare, rather than keeping them out of your diet altogether if you can.
  • Incorporate Nutrient-Dense Foods: Nutrient-dense, easily digestible foods like bananas, white rice, eggs, and lean meats (like chicken and turkey) can provide essential vitamins, minerals, and protein without aggravating symptoms. Incorporating bone broths, smoothies, and pureed soups can also help patients maintain a balanced diet while being gentle on the GI tract.
  • Stay Hydrated: Hydration is crucial, especially for IBD patients who experience diarrhea. Drinking water, broth, and electrolyte-rich fluids can help maintain fluid balance, prevent dehydration, and support digestion. Add salt to your food for hydration. If you’re struggling to maintain hydration, you may benefit from an oral rehydration solution (ORS).
  • Pain Management Techniques: Alongside diet adjustments, pain management techniques such as relaxation exercises, yoga, or gentle physical activity may help ease abdominal pain and bloating. Walking will help with bloating and gas. Don’t overdo it, even a walk to the mailbox after eating is beneficial. Additionally, medications like antispasmodics or anti-inflammatory drugs, as prescribed by a healthcare provider, can reduce inflammation and pain, allowing patients to eat more comfortably.

Final thoughts

IBD patients face daily challenges in managing symptoms like pain and bloating while trying to maintain adequate nutrition. During a Crohn’s flare, it’s essential to focus on easy-to-digest foods while maintaining hydration and nutrient intake. Consider how to alter the texture of colorful, nutritious fruits and vegetables for comfort, rather than taking them away altogether- your body needs the nutrition for healing! Working closely with healthcare professionals, including a dietitian and gastroenterologist, ensures that patients can minimize symptoms while meeting their nutritional needs, leading to better long-term health outcomes. The goal during a flare is to reduce irritation, manage symptoms like diarrhea, pain, and bloating, and to keep eating while welcoming more anti-inflammation through nutrition!

Helpful resources

Abdominal Pain in Inflammatory Bowel Diseases: A Clinical Challenge – PMC (nih.gov)

Chronic abdominal pain in inflammatory bowel disease: a practical guide | Frontline Gastroenterology (bmj.com)

What you need to know about diet and nutritional therapies for IBD patients – American Gastroenterological Association

Diet and Nutrition in Inflammatory Bowel Disease: A Review of the Literature – PMC (nih.gov)

Managing Pain & Fatigue in IBD (youtube.com)

IBD Diet Guide: Nutrition for Active Inflammatory Bowel Disease (uchealth.com)

Abdominal Pain in Inflammatory Bowel Disease: An Evidence-Based, Multidisciplinary Review – PMC (nih.gov)

Special IBD Diets | Crohn’s & Colitis Foundation (crohnscolitisfoundation.org)

What Should I Eat? | Crohn’s & Colitis Foundation (crohnscolitisfoundation.org)

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

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