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!

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Cyclospora and IBD: Should You Still Be Avoiding Fresh Produce?

Since mid-July, I haven’t had a salad with lettuce, fresh berries, grapes, you name it. It may seem extreme, but as someone living with Crohn’s disease, I’ve been fearful of contracting Cyclospora.

It’s been making headlines for weeks, but for those who may not know, Cyclospora is a foodborne parasite that causes an intestinal infection. Symptoms can include watery diarrhea, stomach cramps, bloating, fatigue, gas, nausea, and loss of appetite.

For someone with inflammatory bowel disease (IBD), the tricky part is that Cyclospora can mimic an IBD flare because the symptoms can be so similar. This week on Lights, Camera, Crohn’s, we’re taking a deep dive into the current Cyclospora concerns and hearing from three well-respected gastroenterologists about how our community should be navigating them.

What the Community Has to Say

I shared a poll on my Instagram (@natalieannhayden) asking my followers: “If you have IBD, are you still refraining from eating lettuce, berries, cilantro, jalapeños, etc. due to Cyclospora?”

Of the 421 people who responded, 47% said “yes,” 33% said “no,” and 20% said they “never stopped.”

Hearing this didn’t entirely surprise me. When I went out to dinner with my family over the weekend, I was shocked to see almost every table with people eating salad. It made me wonder: Am I being too extreme? Should I start eating my normal diet again?

I should note that I’ve continued cooking vegetables for my family, and we’ve still been eating apples, bananas, and melons. But I’ve personally been avoiding many of the foods that have made me nervous during this outbreak.

And judging from the responses I received, I’m certainly not alone.

Madison: “Ugh, I so badly want a Jimmy John’s sandwich after pregnancy, but I’m so worried to get Cyclospora and flare.”

Amanda: “I never stopped eating fresh produce because I get my food from the farmers market.”

Katie: “Never been so happy for my garden than this summer!”

Jaclyn: “I think I may start eating the Little Leaf brand lettuce again. They have publicly stated they are not affected and have shared their production process. It’s been months of not eating produce, so I’m reallllly missing it. Also, I need my fiber!!”

Phoebe: “I’m only buying from my local farmers market, and I took my family berry picking to be safe.”

Sarah: “Only pre-bagged shredded lettuce, but I’ll probably give up on refraining from eating it, as I’m not seeing as many patients with it now.”

Lyndsie: “They told me at chemo prep to avoid the diarrhea lettuce…but I did just have Chipotle last night (which uses cilantro and jalapeño) …so wish me luck!”

Rachel: “It’s killing me! I really want my fruit and lettuce back! However, I don’t want to risk anything like a flare or the potential to flare due to an illness. It is such a scare when you have been in remission for a while!”

Madison: “I have just started to eat lettuce and blueberries again since early June. It’s scary for sure! From what I’ve read, they identified the source of the lettuce issue, and I just had berries yesterday for the first time in almost two months. We’re washing them very well and hoping for the best.”

Laura: “Only eating fresh veggies from my garden and currently sticking to melon and bananas for fresh fruit mostly.”

From the Experts

I wanted to hear from gastroenterologists I know and trust. I asked them how they’re guiding their IBD patients through these uncertain waters and what advice they have for our community about whether we still need to be mindful of what we put on our plates.

“The outbreak of Cyclospora appears related to certain produce, for example, lettuce. While the distribution of these foods seems to be better understood, it’s still reasonable to take precautions in the preparation of certain foods,” says Dr. Miguel Regueiro, MD, Chief of the Digestive Disease Institute (DDI) at Cleveland Clinic. “General guidance for anyone with fresh produce is to wash vegetables and fruit thoroughly with water and practice hand washing with soap and water before and after handling. This is true for IBD patients and those without IBD.”

Dr. Matthew Ciorba, MD, Director of the Inflammatory Bowel Disease Center at Washington University School of Medicine, agrees, saying it isn’t necessary for most people—including most people with IBD—to give up entire categories of foods such as all lettuce, berries, jalapeños, avocados, cilantro, or parsley.

“What makes more sense is to pay attention to the specific products named in an active outbreak or recall, avoid those while the outbreak is ongoing, and relax once the implicated product is off the market. Cyclospora is also seasonal in the U.S. (roughly late spring through summer), so the highest-alert window is limited,” he explains.

One important nuance for our community: if you’re taking immune-suppressing medications, including biologics, immunomodulators, or steroids, it may be reasonable to take additional precautions during an active outbreak. That could mean leaning toward cooked or peeled produce rather than raw leafy greens and soft fruits. This is a personal decision and one worth discussing with your own GI doctor, since recommendations can depend on your medications and individual circumstances.

“Washing helps, but it is not a guarantee. Cyclospora oocysts are tiny and sticky, and they resist the chlorine-based rinses used commercially,” Dr. Ciorba says. “So, scrubbing your salad at home reduces the load but can’t be counted on to make contaminated produce ‘totally safe.’ Cooking is far more reliable than rinsing. So ‘wash thoroughly’ is good advice, just not a force field.”

How to Tell Cyclosporiasis Apart from an IBD Flare

Cyclosporiasis typically causes watery, sometimes explosive, frequent diarrhea, cramping, bloating, nausea, poor appetite, fatigue, weight loss, and sometimes low-grade fever, all symptoms that can be mistaken for an IBD flare.

“Two clues point toward Cyclospora rather than IBD: symptoms often start about a week after an exposure, and they tend to wax and wane, dragging on for weeks if untreated. The biggest red flag is diarrhea that doesn’t improve when you and your doctor step up your usual IBD treatment. That’s a signal to test for something else,” says Dr. Ciorba.

Cyclospora is not picked up by every routine stool test or GI panel. Your doctor may need to order a Cyclospora-specific test. Because the parasite can be shed intermittently, more than one stool sample collected a couple of days apart may improve the chances of detecting it.

“We are now doing this for our patients, and patients can ask their doctors if they plan to order the special stool study,” says Dr. Ciorba.

The practical takeaway: new or persistent diarrhea during outbreak season, especially if it isn’t responding to your usual flare plan, is a reason to talk with your doctor about Cyclospora testing rather than automatically assuming it’s your IBD.

Other Precautions and Warning Signs Worth Knowing

The good news is that when Cyclospora is identified, it is treatable. The standard treatment is an antibiotic called trimethoprim-sulfamethoxazole, with alternatives available for people with a sulfa allergy.

Dr. Uma Mahadevan, MD, Director of the Colitis and Crohn’s Disease Center at the University of California, San Francisco, says fortunately, California has not been hit as hard as some other states.

Dr. Mahadevan recommends:

  • Avoiding recalled products, such as implicated iceberg lettuce.
  • If you are significantly immunosuppressed, such as during a flare or while taking steroids plus a biologic, consider cooked vegetables over raw salads.
  • Being particularly careful with raw salads at restaurants.
  • Washing fruits and vegetables thoroughly under running water and scrubbing produce such as melons.

“For pregnant women, I would use the same cautions as listed above. I would not recommend overly restricting diet. It seems like there is a greater risk in the Great Lakes/Midwest area, so those patients should be more careful. It is a tough one as the tracking of the infections is not great,” Dr. Mahadevan says.

The Bottom Line

If you’re living with IBD, it’s completely understandable to feel uneasy when an intestinal infection like Cyclospora is making headlines. When you’ve worked hard to manage your disease or achieve remission, the last thing you want is an infection that could potentially trigger symptoms or leave you wondering whether you’re experiencing an infection or an IBD flare.

But the experts I spoke with agree on an important point: this doesn’t mean you need to eliminate fresh fruits and vegetables from your diet. Instead, stay informed about active outbreaks and recalls, practice careful food preparation and handwashing, and talk with your gastroenterologist if you develop persistent diarrhea, cramping, or other symptoms that could indicate either an infection or a flare.

For me, that may mean slowly becoming a little less fearful of the produce aisle. I’m not sure I’m ready to dive headfirst into a giant salad just yet, but knowing what the experts are recommending makes me feel much more comfortable making informed decisions rather than letting fear dictate what I eat.

As with so many things in life with IBD, knowledge is power and finding that balance between being cautious and still living your life matters, too.

Eighteen Years of Humira: The Treatment That Helped Me Build a Life, Not Just Manage a Disease

Eighteen years ago, when I was 24 years old, I gave myself my very first Humira injections following a hospitalization for an abscess the size of a tennis ball in my small intestine. The loading dose involved four painful injections, in my GI office. While much of my patient journey tends to be a blur, the day I started Humira is crystal clear in my memory. I remember how I was sitting, what it felt like, the emotions, the tears, the worry about starting a biologic medication, and the desperation to be well.

I don’t have any photos of the day I started on Humira, but this was the month after my loading dose, while still on 60 mg of prednisone.

At the time, I wasn’t thinking about anniversaries or milestones. I wasn’t wondering if I’d still be taking this medication nearly two decades later. I was simply hoping it would work. This week on Lights, Camera, Crohn’s I reflect on what I’ve learned and what I wish I knew all those years ago.

Would life ever be the same?

When you live with Crohn’s disease or ulcerative colitis, hope can sometimes feel like the most powerful prescription of all.

Back then, my disease had already taken so much from me. I had endured three years of on and off flares, hospitalizations, procedures, uncertainty, and the emotional weight that comes with wondering if you’ll ever feel like yourself again. I went from being a perfectly healthy person to being diagnosed with Crohn’s at age 21, put on 22 pills a day, and not knowing what the future would hold.

Humira didn’t cure my Crohn’s disease. There is still no cure, of course. But it gave me something I desperately needed: stability. Over the past 18 years, this injection has quietly stood beside me through nearly every major chapter of my adult life.

It helped me continue my career as a television journalist and keep my IBD private from the public, thanks to the medication being a self-injection. It was there as I found my voice as a patient advocate and launched Lights, Camera, Crohn’s. It was there when I fell in love, got married, and became a mom to three children. It’s been there through pregnancies, postpartum life, sleepless nights, school drop-offs, family vacations, soccer/baseball/basketball games, dance recitals, and countless ordinary moments that aren’t ordinary when you’re living with a chronic illness.

Because chronic illness has a way of making the ordinary feel extraordinary.

My youngest child was ironically born on the anniversary of when I started Humira (July 14th)!

Not all sunshine and rainbows

There have certainly been bumps along the way. People are often surprised to hear that I still had multiple bowel obstructions and hospitalizations prior to my bowel resection surgery in 2015, despite being on Humira. More recently, I experienced firsthand how disruptive a forced switch to a biosimilar in 2024 was before successfully appealing to return to Humira. And like anyone living with inflammatory bowel disease, I still have difficult days, anxious moments, unexpected symptoms, and reminders that remission doesn’t always mean life is symptom-free.

But through it all, Humira has remained the foundation of my treatment and a crutch in my life. I recognize how fortunate I am to still be on the same therapy all this time.

No two journeys look the same

One of the greatest lessons patient advocacy has taught me is that no two IBD journeys look alike.

I know many people who have cycled through medication after medication searching for relief. Reminder: The medications are failing you; you aren’t failing anything. Others have exhausted every available therapy, no fault of their own. Some are preparing to start clinical trials because approved treatments have stopped working. Many have endured multiple surgeries, ostomies, prolonged hospital stays, or years of uncontrolled inflammation despite doing everything right.

Their stories matter just as much as mine.

When I share that one medication has managed my disease for 18 years, I don’t do so to suggest this is typical or attainable for everyone. I share it because it represents what every person living with IBD deserves: a treatment that allows them to live life fully. When I started Humira 18 years ago, I had no idea if it would help control and manage my Crohn’s.

I never take that for granted. I don’t know if a year from now I’ll still be in the same boat or if this is a medication I will be on for the rest of my life. I’ve gotten to the point where it’s difficult to imagine life without it, which can feel a bit daunting.

Science changes lives

Every injection is a reminder that science changes lives.

Years ago, biologic medications transformed what was possible for people like me. Back in 2008, there were only two options for IBD patients (Remicade or Humira), now the landscape for treatment options is so vast. Before these therapies existed, many patients faced repeated surgeries, lengthy hospitalizations, and significantly fewer treatment options. Steroids were the go-to. Today, the landscape continues to evolve with new biologics, biosimilars, small molecules, and research that offers hope to the next generation of patients.

I’ve had a front-row seat to that evolution, not only as a patient but as an advocate and journalist interviewing physicians, researchers, and fellow patients around the world. I’ve learned that medicine isn’t just about controlling inflammation.

It’s about allowing someone to chase a career.

To become a parent.

To celebrate birthdays.

To travel.

To make memories.

To simply say yes to life more often than no.

Final thoughts

For me, Humira became more than a medication. It became a bridge between the life Crohn’s disease tried to take away and the life I was determined to build.

If you’re reading this and your current treatment isn’t working, please don’t lose hope.

I’ve met far too many people who found the right therapy after believing they’d run out of options. Research continues to move forward. New medications continue to emerge. Physicians are learning more every year about how to personalize treatment and truly target our disease. Your next chapter may look very different from the one you’re living in today.

And if you’ve found a treatment that works, whether it’s been six months, six years, or eighteen years, I hope you pause to appreciate what an incredible gift that is. Not because the journey is easy. But feeling well enough to live your life and discover a new normal is something worth celebrating.

Today, I’m incredibly grateful.

Grateful to the physicians who believed in biologic therapy long before it became commonplace. Grateful to researchers who dedicate their careers to continuing to advance IBD care. Grateful to my family for standing beside me through every injection and every flare. And grateful for a medication that has helped me experience so many beautiful moments I once feared Crohn’s disease would steal.

Eighteen years later, I’m still here. Still advocating. Still telling stories. Still raising my family. Still chasing dreams. Still injecting every other week.

And I am still profoundly thankful that this self-injection that I’ve given myself 480 times, has helped me live a life that has been so much bigger than my diagnosis.

The Whiplash of Living with IBD: When Remission Doesn’t Feel Like Remission

Just when you start to trust your body again, inflammatory bowel disease (IBD) has a way of reminding you who’s in charge. Last week, my bloodwork was perfect. My inflammatory markers were normal. By every measurable standard, I was doing well. Remission was validated.

Then Thursday evening hit.

What followed was nearly three days of constant, debilitating abdominal pain that left me glued to the couch with a heating pad, exhausted, frustrated, and questioning everything I thought I knew about my disease. Each night I went to bed and woke up with the same pain. By Sunday morning, out of nowhere, the pain suddenly lifted. As I write this (Monday), I’m back to feeling like myself. Luckily, I had a Humira injection today!

If you’ve lived with Crohn’s disease or ulcerative colitis for any length of time, chances are you’ve experienced this type of whiplash. One day you’re making plans, feeling strong, and celebrating remission. The next, you’re wondering if a flare is brewing, if your medication has stopped working, or if you’re headed back down a road you’ve traveled before. And the hardest part? Sometimes there are no clear answers. This week on Lights, Camera, Crohn’s a look at the behind-the-scenes reality of life with IBD, even when you’re in remission.

When the Tests Say One Thing and Your Body Says Another

One of the most mentally exhausting aspects of IBD is that symptoms and objective disease activity don’t always line up and they often show up unannounced.

You can have:

  • Normal bloodwork
  • Normal fecal calprotectin
  • A recent clear colonoscopy
  • Therapeutic levels of your biologic
  • No evidence of active inflammation

And still experience significant symptoms. That’s not to say the pain isn’t real. It absolutely is. For some people, symptoms can stem from scar tissue, adhesions, visceral hypersensitivity, altered gut motility, stress, infections, dietary triggers, or other gastrointestinal conditions that coexist alongside IBD. Sometimes it’s a temporary viral illness. Sometimes it’s something that remains unexplained.

When I saw my GI today, he wasn’t overly concerned given my recent normal labs and the fact that the symptoms had resolved. The only change he made was moving my surveillance colonoscopy up a few months, from December to August/September, to provide some additional reassurance and make sure nothing is missed.

While I appreciated the precaution, I’ll admit part of me still wonders what caused all of this to happen. I’m left with something many IBD patients know all too well: uncertainty.

The Mental Toll Nobody Talks About

The physical pain was difficult. The mental spiral was challenging. When symptoms appear out of nowhere, it’s easy to immediately jump to worst-case scenarios:

“Is my medication failing?”

“Am I flaring?”

“Did I do something wrong?”

“What if I’m hospitalized this summer with all three kids out of school?”

“Is this the beginning of something bigger?”

Living with a chronic illness means carrying years, sometimes decades, of medical trauma and memories. Next month marks 21 years since my Crohn’s diagnosis, as a veteran patient, I consider myself to be well-versed on not only IBD, but how my symptoms speak to me and when I truly need to listen. Ironically, the month of July has historically been my “worst” month. I’ve had several hospitalizations during that month, so this time of year, I’m always a bit weary.

A bad pain day doesn’t just exist in the present moment. It can instantly transport you back to previous flares, hospitalizations, surgeries, or periods when your disease wasn’t controlled. For many of us, the fear isn’t about today’s symptoms. It’s about what those symptoms might mean tomorrow.

You’re Not Alone

If this experience sounds familiar, you’re in good company.

Many people living with IBD report episodes of abdominal pain or GI symptoms despite being in clinical or even endoscopic remission. In fact, symptom burden remains one of the biggest quality-of-life challenges in the IBD community. We often hear the word “remission” and imagine a finish line.

Since I reached surgical remission in August 2015 following bowel resection surgery (18 inches of my small intestine + appendix), I’ve come to realize the reality is much messier.

Remission doesn’t always mean symptom-free. It doesn’t mean every stomachache disappears or that you may not urgently have to run to the bathroom 5+ times a day. It doesn’t mean you’ll never have a bad day or week. And it certainly doesn’t mean your concerns aren’t valid. I think one of the most challenging parts of remission is that friends and family just think you’re 100% well all the time because the average person thinks remission is perfect, normal health, when in fact it’s not.

How to Navigate the Whiplash

When symptoms strike unexpectedly, here are a few strategies that can help:

Don’t Panic on Day One. Easier said than done, I know.But not every symptom equals flare. Give yourself permission to gather information before jumping to conclusions. I typically allow 2-3 days of symptoms before I reach out to my GI team over the patient Portal.

Reach Out to Your Care Team. Even if symptoms resolve, it’s worth documenting what happened and notifying your GI. Patterns matter. Taking notes whether handwritten or on your phone/computer will help you keep track of the good days vs. the rough days. Oftentimes when we’re in clinic, we tend to gloss over the hard times not because we’re being evasive purposefully, but because our normal isn’t normal, but it becomes our normal. You get what I’m dropping.

Focus on Trends, Not Moments. A few rough days may be less concerning than symptoms that steadily worsen over weeks.

Ask yourself:

  • Is this getting better, worse, or staying the same?
  • Are symptoms recurring?
  • Am I seeing new symptoms?

Trust Your Experience. Normal labs are reassuring, but they don’t invalidate your symptoms.You know your body.You don’t need abnormal test results to justify seeking support.

Keep a Symptom Journal. Documenting pain levels, diet, stress, sleep, and bowel habits can sometimes reveal patterns that aren’t obvious in the moment.

Consider Seeking Help from a GI Psychologist. My GI brought this option up to me in clinic today. Even though we may feel like we have a good handle on it all, living with IBD can be heavier than we realize and managing our anxiety and coping mechanisms with a professional can help us take life on more effortlessly. There are many amazing psychologists who specialize in IBD, many with virtual visits available right at our fingertips.

Remember That Remission Isn’t Fragile. One bad weekend doesn’t erase months or years of progress.This is something I’m reminding myself of right now.

Moving Forward

IBD has taught me many lessons over the past two decades, but one of the hardest is learning to live in the gray area. Not every symptom has an immediate explanation. Not every setback becomes a flare.

And sometimes the most difficult part of this disease isn’t the inflammation itself, it’s the uncertainty. This past weekend was a reminder that even in remission, Crohn’s disease can still mess with your head. But it was also a reminder that symptoms can pass. That normal labs still matter. That one difficult chapter doesn’t automatically predict the rest of the story.

If you’ve ever experienced the whiplash of feeling healthy one day and terrified the next, know this: You’re not overreacting. You’re not imagining it. And you’re certainly not alone.

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

Inside IBD Pregnancy with a GI Psychologist: What Patients Need to Know

Finding out you’re pregnant can be one of the most profound moments of one’s life; and, if you’re living with Crohn’s disease or ulcerative colitis, that moment is almost immediately followed by a flood of questions that others don’t have to think about. Will my IBD flare? Is my medication safe? What does this mean for my pregnancy? Can I even do this?

The answer to that last question is yes, absolutely, yes. But it takes a team, a plan, and attention to more than just your GI symptoms. As an IBD mom of three, I’ve been in your shoes and know how it feels to bring a life into this world with so many unknowns.

This week on Lights, Camera, Crohn’s we hear from Licensed Clinical Psychologist, Dr. Antonia Repollet, who specializes in gut-brain health at GI Psychology. Dr. Repollet is a fellow Crohnie and a mother. She works with people navigating exactly this intersection every day. She shares what she wants every person with Inflammatory Bowel Disease (IBD) to know about pregnancy: the medical side, the emotional side, and the parts that often get left out of the conversation entirely.

Your Gut Is Already Under Pressure

Pregnancy is a full-body experience. Hormonal shifts in progesterone, estrogen, and cortisol affect mood and energy, and they directly shape how the gut functions. Progesterone relaxes smooth muscle, slowing the movement of food through the digestive tract (Alqudah et al., 2022). Estrogen influences gut permeability and the composition of the gut microbiome (Chen et al., 2025). Cortisol, the body’s primary stress hormone, can heighten GI sensitivity and drive inflammation (Cherpak, 2019). Together, these hormonal changes can increase bloating, reflux, and constipation even in people without IBD. Add a growing uterus physically displacing digestive organs, and it’s no wonder the gut feels unsettled!

Whether you’re a first-time mom-to-be or someone who has had several children, we know how complicated it can feel to navigate these changes in your body on top of IBD. It’s not unusual to feel a bit overwhelmed.

“For someone with Crohn’s or ulcerative colitis, these changes land on an already-sensitive system, and the hormonal picture matters more than people often realize. Hormones are among the key messengers of the gut-brain axis, the two-way communication highway between the digestive tract and the nervous system,” explain Dr. Repollet. “During pregnancy, when hormone levels are shifting, this axis is working overtime, and stress often amplifies this further. For example, anxiety about your health, your pregnancy, your body, your medications: all of it feeds back into the gut through hormonal and neurological pathways, and the gut sends it right back to the brain. Thus, pregnancy can disrupt this loop.”

Why Remission Before Conception Matters

Here’s something important: research consistently shows that the best predictor of IBD staying stable during pregnancy is whether disease was well-controlled at the time of conception (Abhyankar, 2013). Studies have found that approximately 66% of IBD patients who conceive during active disease experience continuing or worsening symptoms throughout pregnancy (Hashash & Kane, 2015).

Dr. Repollet says, “Remission going in doesn’t guarantee smooth sailing, but it does dramatically improve the odds for both the pregnant person and the developing fetus.”

Looking back, I’m grateful for the timing of my bowel resection surgery when I was engaged, because it put me into surgical remission, and helped prep my body for pregnancy after I got married. Prior to surgery, I had never heard the word “remission” from my gastroenterologist. With IBD pregnancies, this is where the “rule of thirds” comes in. One third of women experience an improvement of IBD symptoms, one third stay the same, and one third see an uptick.

Active disease during pregnancy is associated with increased risks of miscarriage, preterm birth, low birth weight, and other complications (Boyd et al., 2015). This is why the conversation with your gastroenterologist needs to happen before you start trying to conceive, not after a positive pregnancy test.

The Medication Questions

Please don’t stop without talking to your doctors!

“One of the most common things I hear from IBD patients considering pregnancy is some version of: “I thought I should stop my medication just to be safe.” The instinct makes complete sense, because you want to protect your pregnancy. But stopping IBD medication without medical guidance can put you and your fetus at greater risk by triggering a flare,” Dr. Repollet advises.

Many IBD medications, including biologics like infliximab, adalimumab, and certolizumab, are considered safe during pregnancy and are recommended to maintain remission (Mahadevan et al., 2019; Peifer, 2024). Some, like methotrexate, do need to be stopped well before conception, and this applies regardless of which reproductive organs you have (Peifer, 2024). This is important for both partners, as medication safety around conception is a conversation for anyone planning to conceive, regardless of gender. Your GI and obstetrician (OB) should be making these decisions together, with your input.

Build Your Team Before You Need Them

A whole-person approach to pregnancy with IBD means your care team should include more than just your GI and OB. Depending on your history, you may also benefit from a maternal-fetal medicine specialist (an OB with advanced training in high-risk pregnancies), a dietitian who understands IBD and prenatal nutrition, a lactation consultant familiar with chronic illness, and a mental health provider who specializes in the gut-brain connection. According to findings from the Global Consensus on IBD and Pregnancy, all IBD pregnancies are deemed “high risk.”

Dr. Repollet tells me the last one matters more than people realize.

The Part That Doesn’t Get Talked About Enough: Your Mental Health

People with IBD are two to three times more likely to experience anxiety and depression than people without (Neuendorf et al., 2016). Rates of anxiety in IBD hover around 32%, and depression around 25% (Barberio et al., 2021). These numbers don’t go down during pregnancy. If anything, the uncertainty, the body changes, the fear of flares, and the weight of managing a chronic illness while growing a new life can make them go up.

“And here’s what’s easy to overlook: your emotional state is not separate from your physical symptoms. Stress releases hormones that increase inflammation. Anxiety heightens gut sensitivity. When you’re scared that every cramp might be a flare, that fear itself can worsen symptoms. The mind and the gut are in constant conversation,” says Dr. Repollet.

This is why mental health support isn’t a “nice to have” treatment during pregnancy with IBD and should be part of the medical plan.

Evidence-based approaches like Cognitive Behavioral Therapy (CBT) for GI conditions (CBT for GI) (Gracie et al., 2017) and gut-directed hypnotherapy (Keefer et al., 2013) have been shown to reduce GI symptoms, lower flare frequency, and improve quality of life in IBD patients. These approaches are safe during pregnancy, non-pharmacological, and can be genuinely life-changing for anyone who feels like they’re white-knuckling through their pregnancy.

A Story That Might Sound Familiar

“One of my patients (I’ll call her “Alex”) was 12 weeks pregnant and living with Crohn’s. Inflammation was well-controlled, but daily abdominal cramping and pain, diarrhea, and racing thoughts about whether symptoms were affecting the pregnancy had taken over. The response from providers (e.g., “It’s just pregnancy hormones.”) left Alex feeling dismissed and alone.”

With gut-brain therapy, Alex learned to track symptom patterns, practice diaphragmatic breathing, and use clinical hypnosis to interrupt the anticipatory anxiety that was amplifying physical symptoms.

Dr. Repollet says, “Over eight weeks, symptoms decreased, sleep improved, and (maybe most importantly) there was a renewed trust in the body’s signals. Feeling prepared going into delivery and postpartum was something Alex hadn’t expected to feel, but did. This is a reminder that emotional care is physical care. They are not separate things.”

What to Watch For and When to Reach Out

Consider seeking mental health support if you are:

  • Struggling to eat or sleep due to GI symptoms or anxiety
  • Experiencing GI symptoms that feel emotionally overwhelming, are hard to separate from anxiety, or seem to worsen with stress
  • Experiencing distress (whether related to your IBD, your pregnancy, or both) that is interfering with daily life
  • Having fears about flares, delivery, or being a high-risk patient that feel consuming
  • Dealing with resurfacing trauma from prior pregnancy loss, difficult medical experiences, or a complicated diagnosis journey
  • Simply wanting a space to process this enormous thing you are navigating

Please know that you don’t have to be in crisis to deserve support.

The Postpartum Chapter

Pregnancy often gets most of the attention, but postpartum is its own significant transition for people with IBD.

“Hormonal shifts after delivery, sleep disruption, feeding decisions in the context of your medication regimen, and the emotional adjustment to new parenthood can all influence disease activity. Having a plan for the postpartum period, including who on your care team you’ll check in with and how, should be part of a complete prenatal plan,” explains Dr. Repollet.

I remember during all my pregnancies how fearful I was about how I would feel after delivery. By staying on my medication (Humira), it helped keep symptoms at bay not only during my pregnancies, but also after my scheduled c-sections. I required a short burst of steroids after my second child was born, but luckily never experienced a full-blown flare.

It can be easy to place all your focus on your baby but be mindful of how your body is speaking to you through symptoms so you can communicate this directly to your care team, before you’re dealing with an acute flare. Trust that by sharing what you’re going through you’re doing what is not only best for yourself, but what’s best for your family.

You Deserve Coordinated, Whole-Person Care

Pregnancy with Crohn’s or ulcerative colitis is possible. Many people do it every year with the right support, effective communication between providers, and attention to both the physical and emotional layers of what they are carrying.

“At GI Psychology, we specialize in helping people with IBD and other GI conditions navigate exactly these kinds of life transitions. Our clinicians are trained in gut-brain therapies including CBT-GI and gut-directed hypnotherapy, and we work via telehealth across all 50 states + Washington D.C., so support is accessible wherever you are. We also offer an 8-week virtual IBD Psychotherapy Group for adults living with Crohn’s and ulcerative colitis, designed to provide evidence-based tools alongside community with people who truly get it,” says Dr. Repollet.

If you’re planning for pregnancy, currently pregnant, or navigating the postpartum period with IBD, you don’t have to figure it out alone.

Learn More About GI Psychology:

Participate in IBD Pregnancy Research

References

Abhyankar, A., Ham, M., & Moss, A. C. (2013). Meta-analysis: the impact of disease activity at conception on disease activity during pregnancy in patients with inflammatory bowel disease. Alimentary pharmacology & therapeutics, 38(5), 460–466.

Alqudah, M., Al-Shboul, O., Al Dwairi, A., Al-U´Datt, D. G., & Alqudah, A. (2022). Progesterone inhibitory role on gastrointestinal motility. Physiological research, 71(2), 193–198.

Barberio, B., Zamani, M., Black, C. J., Savarino, E. V., & Ford, A. C. (2021). Prevalence of symptoms of anxiety and depression in patients with inflammatory bowel disease: a systematic review and meta-analysis. The lancet. Gastroenterology & hepatology, 6(5), 359–370.

Boyd, H. A., Basit, S., Harpsøe, M. C., Wohlfahrt, J., & Jess, T. (2015). Inflammatory bowel disease and risk of adverse pregnancy outcomes. PloS One, 10(6), e0129567.

Chen, M., Wang, J., Yang, Y., He, Y., & Li, L. (2025). The interplay of estrogen, gut microbiome, and bone immunity in osteoporosis. Cell communication and signaling : CCS, 23(1), 516.

Cherpak C. E. (2019). Mindful Eating: A Review Of How The Stress-Digestion-Mindfulness Triad May Modulate And Improve Gastrointestinal And Digestive Function. Integrative medicine (Encinitas, Calif.), 18(4), 48–53.

Gracie, D. J., Irvine, A. J., Sood, R., Mikocka-Walus, A., Hamlin, P. J., & Ford, A. C. (2017). Effect of psychological therapy on disease activity, psychological comorbidity, and quality of life in inflammatory bowel disease: a systematic review and meta-analysis. The Lancet Gastroenterology & Hepatology, 2(3), 189–199.

Hashash, J. G., & Kane, S. (2015). Pregnancy and inflammatory bowel disease. Gastroenterology & Hepatology, 11(2), 96–102.

Keefer, L., Taft, T. H., Kiebles, J. L., Martinovich, Z., Barrett, T. A., & Palsson, O. S. (2013). Gut-directed hypnotherapy significantly augments clinical remission in quiescent ulcerative colitis. Alimentary Pharmacology & Therapeutics, 38(7), 761–771.

Mahadevan, U., Robinson, C., Bernasko, N., Boland, B., Chambers, C., Dubinsky, M., … & Kane, S. (2019). Inflammatory bowel disease in pregnancy clinical care pathway: A report from the American Gastroenterological Association IBD Parenthood Project Working Group. Gastroenterology, 156(5), 1508–1524.

Neuendorf, R., Harding, A., Stello, N., Hanes, D., & Wahbeh, H. (2016). Depression and anxiety in patients with Inflammatory Bowel Disease: A systematic review. Journal of Psychosomatic Research, 87, 70–80.

Peifer, R. (2024, January 26). IBD and pregnancy: What you need to know. Crohn’s & Colitis Foundation. https://www.crohnscolitisfoundation.org/blog/ibd-and-pregnancy-what-you-need-to-know

When Your Body Doesn’t Follow the Rules: The Overlap Between Endometriosis and IBD No One Talks About

For many women, living with chronic illness means constantly decoding what our bodies are trying to say. When you have inflammatory bowel disease (IBD), whether Crohn’s disease or ulcerative colitis, you get used to tracking symptoms, identifying triggers, and advocating for yourself.

But what happens when something doesn’t quite fit the IBD pattern and the usual narrative?

For a significant number of women, the answer may be endometriosis, a condition that often overlaps with IBD in ways that can delay diagnosis, complicate treatment, and intensify daily life. This week on Lights, Camera, Crohn’s we break down the possible connection, what to watch for, and how to advocate for the care you deserve. I don’t personally have endometriosis with my Crohn’s, so you’ll hear from 10 women who live this reality as they transparently share what it’s like for them and what they’ve learned along the way.

What Is Endometriosis?

Endometriosis occurs when tissue similar to the lining of the uterus grows outside the uterus. This can happen on the ovaries, fallopian tubes, bowel, bladder, and other pelvic structures. This tissue still responds to hormonal cycles, which can lead to:

  • Inflammation
  • Pain
  • Scar tissue (adhesions)
  • Organ involvement (including the intestines)

I ran a poll in my Instagram Stories asking about IBD and endometriosis. Of the 85 votes, 27% of women said they have both, 31% said they think they may have both, and 42% said they don’t have both. Those numbers speak volumes.

What the Stages of Endometriosis mean

Endometriosis isn’t staged the same way cancers are, it’s not about how dangerous it is, but about how much disease is seen during surgery. The most used system is from the American Society for Reproductive Medicine, which divides endo into four stages based on location, depth, size of implants, and scar tissue (adhesions).

Here’s what each stage means:

Stage I — Minimal

  • Small, superficial patches of endometrial-like tissue
  • Little to no scar tissue
  • Often found on the ovaries or pelvic lining

What it feels like:
Symptoms can be mild… or surprisingly intense. Some people with Stage I still have significant pain.

Stage II — Mild

  • More lesions than Stage I
  • Some may be deeper (not just surface-level)
  • Minimal adhesions may start forming

What it feels like:
Pelvic pain, painful periods, sometimes pain with ovulation. Still very variable.

Stage III — Moderate

  • Many lesions, including deep implants
  • Presence of adhesions (organs may start sticking together)
  • Small cysts on ovaries called endometriomas may appear

What it feels like:
More consistent pelvic pain, possible pain with sex, bowel symptoms depending on location.

Stage IV — Severe

  • Extensive deep lesions
  • Thick adhesions (organs can be significantly stuck together)
  • Larger ovarian endometriomas (“chocolate cysts”)
  • May involve bowel, bladder, or other organs

What it feels like:
Chronic, often severe pain; higher likelihood of fertility challenges; symptoms tied to whichever organs are affected.

The most important thing to understand

Stage does NOT equal pain level. Someone with Stage I can be debilitated, while someone with Stage IV might have fewer symptoms. That’s one of the most frustrating parts of endo, it doesn’t behave predictably. That being said, just because you may have Stage 1 should not diminish your experience as a patient or the suffering you are coping with.

Why Endometriosis and IBD Get Confused

The overlap between endometriosis and IBD is more than coincidental, it’s believed to be symptomatically and biologically intertwined.

Both conditions can cause:

  • Abdominal pain and cramping
  • Diarrhea or constipation
  • Bloating
  • Fatigue
  • Nausea
  • Pain with bowel movements

If you already have IBD, it’s easy to assume these symptoms are just part of a flare.

Hormonal Influence

Endometriosis is hormone-driven, meaning symptoms often worsen:

  • Before or during your period
  • Around ovulation

Some women with IBD also report symptom fluctuations tied to their menstrual cycle, which can blur the lines even further.

Inflammation Connection

Both conditions involve chronic inflammation, and emerging research suggests there may be shared immune pathways. Women with IBD may have a higher likelihood of developing endometriosis—and vice versa.

Red Flags That It Might Be More Than IBD

If you’re living with IBD, here are signs that something else, like endometriosis, could be at play:

  • Pain that follows your cycle (gets worse before/during your period)
  • Severe pelvic pain that feels different from your typical IBD pain
  • Pain during or after sex
  • Pain with bowel movements specifically during your period
  • Infertility or difficulty conceiving
  • IBD treatments aren’t improving certain symptoms

One of the biggest clues? When your gut symptoms don’t fully respond to your usual IBD medications.

The Diagnostic Challenge

Diagnosing endometriosis isn’t straightforward.

  • Imaging (like ultrasound or MRI) can help, but may miss smaller lesions
  • The gold standard is laparoscopic surgery, where a specialist can see and biopsy the tissue

For women with IBD, this can feel overwhelming, especially if you’ve already been through scopes, scans, surgeries, and procedures. But getting clarity matters.

How It’s Treated

Treatment depends on severity, symptoms, and your goals (like pain relief vs. fertility).

Hormonal Therapy

  • Birth control pills, patches, or IUDs
  • Medications that suppress estrogen

These aim to reduce or stop the growth of endometrial tissue.

Pain Management

  • NSAIDs (with caution in IBD, especially Crohn’s)
  • Other pain-modulating medications

Surgical Treatment

  • Laparoscopic excision of endometriosis lesions
  • Particularly helpful for more advanced disease

Coordinated Care

If you have both IBD and endometriosis, your care team may include:

  • A gastroenterologist
  • A gynecologist (ideally one who specializes in endometriosis)
  • A colorectal surgeon if bowel involvement exists

This team-based approach can make a huge difference.

Living With Both: Practical Advice

Track Your Symptoms Differently

Don’t just track food and bowel habits. Be mindful of:

  • Your menstrual cycle
  • Pain timing and location
  • Symptom patterns across the month

 Patterns can reveal what labs and scans can’t.

Don’t Dismiss “New” Pain

You know your IBD. If something feels different, it probably is. Trust that instinct.

Be Specific With Your Doctors

Instead of saying “I have more pain,” try:

  • “This pain is worse during my period.”
  • “It feels lower in my pelvis than my usual Crohn’s pain.”
  • “My GI symptoms spike even when my inflammation markers are normal.”

Details help providers connect the dots faster.

Be Careful With Medications

Some common treatments for one condition may complicate the other:

  • NSAIDs can aggravate IBD
  • Hormonal treatments may affect GI symptoms differently for each person

Always loop in both your GI and GYN teams.

Advocate for a Second Opinion

Endometriosis is often underdiagnosed and misunderstood. If you feel dismissed, it’s reasonable to seek a specialist, especially one experienced in excision surgery, not just symptom management.

The Emotional Side No One Talks About

Living with one chronic illness is hard enough. Adding another, especially one that affects fertility, hormones, and daily pain, can feel overwhelming.

There’s often:

  • Frustration from delayed diagnosis
  • Anxiety about symptoms overlapping
  • Exhaustion from managing multiple specialists

If this is your reality, you’re not alone and you’re not imagining it.

The Patient Experience: What women with IBD and endometriosis want you to know

Madison: “I could write a novel about endometriosis and IBD! I’ve had three surgeries for endometriosis, and it’s been found on my bowel in two of the surgeries. I eventually asked my GI if it could have been endo all along (it’s not), but it’s interconnected.

She was diagnosed with ulcerative colitis in 2016 but had symptoms for a few years prior. Madison was diagnosed with endometriosis in August 2020 after unexplained infertility but more importantly, debilitating pain once she stopped birth control in early 2019. Looking back, she says her symptoms probably started at puberty (12 years old) but she didn’t know what was normal. 

“I had surgery in August 2020 to confirm the endometriosis diagnosis and have had 2 additional surgeries since then. I wish I would have known during my first surgery that there’s a difference between an ablation of the endometriosis and an excision of the endometriosis,” she explains. “The best way I’ve had it explained to me is imagine burning weeds in your yard vs pulling them out by the root — if you burn the weeds, they will come back. You need to pull them out by the root. However, not every surgeon is trained in excision and the recovery is definitely longer! I looked into endometriosis advocacy groups like Nancy’s Nook (Facebook) to help learn more about the differences and find excellent surgeons.”

Madison ended up having a hysterectomy in 2023 after they suspected adenomyosis (where endometrial tissue grows within the muscle of the uterus) and the quality of life she has now is significantly improved! She still has endometriosis (there’s no cure and it often regrows) but it’s managed much better now.

“I will probably have a fourth surgery in the next couple years, but I’m hopeful that the medicine and science improves to possibly delay an additional surgery. My endometriosis and my ulcerative colitis symptoms are definitely linked. If I’m in a flare for one, I tend to have symptoms increase for the other. For example, my endometriosis causes really painful bloating and I often look distended. If the distension lasts for a few days, my gut tends to revolt and I start to see an increase in GI symptoms. The last 2 surgeries showed I had endometriosis growing on the bowels (both times it was removed) so my cycles would cause really painful GI symptoms that improved after the surgeries.”

She is more convinced now that the gut/brain/pain feedback loop is real. When Madison’s endo is calm, her ulcerative colitis tends to follow suit. She’s so grateful for Instagram which has connected her to other endometriosis patients that have been willing to share their experiences.

Katherine: “Just saw an endo excision specialist 2 months ago. She wants me to do the surgery, but I’m in my second flare right now in the last year and my IBD specialist won’t sign off on it until I’m in endoscopic remission. Now dealing with fighting CVS in an appeal to increase my Rinvoq back to 45 mg.”

Katherine went on to say that one of the most vital steps in her journey was realizing that her body doesn’t operate in silos, so her doctors shouldn’t either.

“Navigating the overlapping pain of ulcerative colitis and endometriosis requires more than just two separate plans; it requires a unified front. I found that getting my IBD specialist deeply involved in my pelvic health was the catalyst for better care, especially since I noticed my symptoms would constantly peak during my cycle, creating a ‘perfect storm’ for inflammation.”

She says her GI understands the specific complexities of her UC and was able to refer her to an endometriosis specialist who wasn’t just an expert in surgery, but someone who respected the delicacy of the bowel.

“When your GI and endo specialist collaborate, you move away from ‘band-aid solutions’ and toward a strategy that addresses how these conditions trigger one another. Don’t be afraid to ask your gastroenterologist for a referral; a specialist who is already vetted by your IBD team ensures that your care plan is safe, cohesive, and designed for your specific anatomy.”

Katherine is currently in her second UC flare in six months after being in remission for five years. The plan is to start progesterone only birth control once she’s back in remission. Then she plans to get endometriosis excision surgery, and an IUD, which will help with her iron deficiency anemia.

Sabrina: “My doctors have suspected I have endometriosis, but I haven’t done the diagnostic surgery yet because I need to wait until I have my surgery to reconnect my J Pouch.”

Kelly wasdiagnosed with endometriosis stage 4 but most likely had it for years. Then, she received her Crohn’s disease diagnosis in 2005.

“We did several rounds of IVF mainly because back then it wasn’t talked about or taken seriously. I never would have done IVF because my Crohn’s got so bad. We adopted in 2009. I had my colon out in 2010. Then in 2016, I was thinking of a hysterectomy because I was so done with the anemia and pain. I ended up with a small bowel blockage due to my endometriosis and end up (I had a J Pouch—I now have an ileostomy) having an emergency hysterectomy and a 10-hour surgery to unglue all my organs and get rid of the scar tissue on my bowels and the damage from the endo.”  

Kim: “I was diagnosed with Endometriosis first, then Crohn’s, then repeat scopes showed endometriosis on my colon as well. I’ve never been told there is a correlation, but it makes total sense (how women’s bodies store trauma and have far more autoimmune conditions as a result). I wish I would’ve known to advocate for myself and my symptoms as a teenager and young adult.”

Kim says too many times (especially for women) we are told it’s “normal” to have symptoms (cramps, excessive bleeding, fatigue, anemia, etc.) and as a young adult, you don’t know to challenge it.

“Even at 30 years old, my PCP was convinced my rectal bleeding was simply from hemorrhoids and only referred me to GI when I insisted. Then, that GI only performed a colonoscopy because of the referral from PCP as “IBD patients typically present much more ill” than me. We then discovered severe, chronic ulceration and full-blown Crohn’s.”

Kristin: “I was diagnosed with stage 4 endo during a hysterectomy in 2024 after years of terrible symptoms that kept me bedridden during my cycle. However, not all my symptoms were relieved from the surgery. About 15 months later (just last month), I was diagnosed with Crohn’s disease and started on biologics. For years, I was told I had a sensitive stomach, or I should take birth control. I wish I knew what endo was years ago. I also wish I knew how much more likely women with endo are for having an autoimmune disease.

Kristen wants women to know that how you describe your symptoms to doctors is just as important as what you tell them. This will directly impact testing and help in finding a diagnosis. It wasn’t until she told her GI that her symptoms were cyclical but seemed to have no rhythm or reason that the testing approach shifted. Kristen wants women to have the courage to speak up about all your symptoms, even if they seem gross or uncomfortable to talk about.

Allie: “I just wish when I was diagnosed with UC that someone would have told me the likelihood of potentially having endo and then the impact it could have on fertility. I would have gone to a fertility specialist early on and potentially frozen my eggs in early adulthood.

Kate: “I was diagnosed with Crohn’s first 25+ years ago. Then endometriosis 23+ years ago. I have stage 4 endo, meaning it was most recently found fusing my vagina and rectum together. I have had a total hysterectomy, multiple surgeries to remove endometrial tissue throughout my pelvis, and both of my ovaries are now gone. This was discovered after YEARS of constipation (weird for me) and NOTHING worked to resolve it.

Kate is on opioids for chronic pain and her doctors kept telling her the pain medication was the culprit for the constipation, but the reversal medications did nothing. She was hospitalized for nine days for pain and constipation, during which they tried everything. The only fix was to slowly drink colonoscopy prep while getting IV pain meds for the pain it caused.

“I kept asking if it could be a structural or a motility problem, and they kept saying it was the opioids. Colonoscopies have shown my Crohn’s is and has been in remission for years (thanks to Azathioprine!)  After the surgery, where they discovered the actual issue (that it was structural), I’ve had zero constipation issues and have been able to finally start coming out of the depression. We are now looking to find a GI doctor who has a better understanding of endometriosis and Crohn’s.”

Kate says the inflammatory process of both diseases mimic each other, and there is no reason to suffer in pain, nor should patients be told they cannot address their pain using the entire toolkit, including opioids, if they allow the patient to become more functional and lead a more fulfilling life.

“Doctors need better education on how systemic both diseases are, and that if Crohn’s symptoms aren’t responding to treatment, they should be worked up for endo. There also needs to be a better understanding that both diseases can be worse than having cancer, as there are no clear protocols, there is little understanding or support, there is little research, and the idea there could be something worse than cancer doesn’t register with most of the general public.”

Lenette: “I found out I had endometriosis when I had a partial hysterectomy to correct iron deficiency anemia. At first, the pain and symptoms all blurred together. It’s taken time for me to be able to distinguish between the two, but sometimes, I’m still unsure what is what. Tracking symptoms helped me distinguish better because I found some symptoms to be cyclical. However, IBD can worsen around your cycle as well and hormones can affect both conditions.”

Lynette recommends women be extremely specific with doctors about their pain. So many symptoms overlap, and she says it can feel two times as bad: bloating, fatigue, mood, etc. All of this can cause pelvic floor tension, and pelvic floor therapy can be life changing.

“It’s also helpful to find community that have both conditions where you can find someone to talk to or learn more about having both. I have found it to be so frustrating to have both because I seem to experience symptoms so much more dramatically than others do at times. Having two conditions that affect the same area and both cause pain and bloating has been so challenging. What helps one condition might not help the other so it can be very trial and error. It has given me a new sense of awareness of my pain and fatigue since I am constantly monitoring to understand which is occurring or if both are the culprit at that time. It’s so frustrating that my IBD is in remission, yet I still experience a lot of symptoms due to my endometriosis.”

She says it can feel like you rarely get a break from pain.

“I try to listen to my body when I’m experiencing a lot of symptoms. I do a lot of deep breathing, stretching, and walking. I also try to listen to my body regarding food. I try to eat nourishing things but also if I’m craving something, I usually eat what I’m craving. If it increases symptoms, I make a note of that. Sometimes my body is OK with certain foods and sometimes it isn’t. I also try to manage stress levels a lot when I’m experiencing symptoms.”

Jessie: “I was diagnosed with Endo and Crohn’s right around the same time at the age of 15. I think my Endo symptoms showed up at first, but they were all diagnosed at once. At the time, the doctors shared no information on any correlation and treated it like two separate issues. As I aged and both progressed, I still struggled to get any acknowledgement from doctors on the two being related; however, once I was diagnosed stage IV Endo and had my last excision + partial hysterectomy, that surgeon said he could see how my condition could be affecting my Crohn’s in the lower colon and perianal area. I had some endo down by the rectum that they removed and there was just a lot of inflammation.”

Jessie says her inflamed uterus (which was adenomyosis) also may have been contributing to overall inflammation in that area as well. She chose to have an excision and partial hysterectomy before her ostomy was reversed, and her perianal symptoms improved so much by not having a period anymore.

“Every time I would get a period, I would experience pain, inflammation, diarrhea, increased urgency, and pressure around that rectal area and my lower abdomen. While I still have my ovaries, not having a period itself every month almost eliminated all those Crohn’s symptoms that would rage around my cycle.”

The Bottom Line

The truth is, not all pain in women with IBD is “just IBD” and continuing to accept that narrative is where too many stories get stuck. Endometriosis is often hiding in plain sight, especially in bodies already labeled as “complicated.” But your body is not confusing, you’re just being asked to connect dots that the healthcare system doesn’t always put together for you.

So, if something feels off, if your symptoms don’t follow the rules, if your pain keeps showing up despite doing “everything right,” do not ignore it. Track it. Name it. Bring it to your care team repeatedly until someone listens.

Because you deserve care that looks at the whole picture. You deserve doctors who are curious, not dismissive. And most of all, you deserve answers, not assumptions. This isn’t about choosing between diagnoses. It’s about recognizing that sometimes, it’s both, and finally getting the care that reflects that reality.

Learn more here

Life With Crohn’s And Endometriosis: An Overlap Of Painful Symptom | EndoFound

Inflammatory Bowel Disease and Endometriosis: Diagnosis and Clinical Characteristics – PMC

Endometriosis Does Not Worsen IBD and May Be Linked to Milder CD Progression – Gastroenterology Advisor

Inflammatory Bowel Disease and Endometriosis: Diagnosis and Clinical Characteristics – PubMed\

Frontiers | Potential shared pathogenic mechanisms between endometriosis and inflammatory bowel disease indicate a strong initial effect of immune factors

ASSOCIATION OF ENDOMETRIOSIS AND INFLAMMATORY BOWEL DISEASE (IBD), FINDINGS FROM EPIDEMIOLOGICAL EVIDENCE TO GENETIC LINKS – Fertility and Sterility

Endometriosis vs IBD: Symptoms, Overlap, and Evidence

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

Food, Flares, and Finding What Works: Real Talk on Eating with IBD

Knowing what to eat with IBD can feel stressful and overwhelming. While research updates in our community are often exciting, the “news” isn’t always actionable for patients and caregivers. Food, however, is where the rubber meets the road—it’s a daily, practical touchpoint for those of us living with IBD.

Kristin Cunningham, MHA, RD, CSDH, LD, a registered dietitian at WashU’s IBD Center in St. Louis, understands this reality both professionally and personally. Diagnosed with Crohn’s disease more than 30 years ago, Kristin recently shared a presentation with her local Crohn’s & Colitis Foundation chapter focused on choosing snacks that are affordable while still meeting the unique needs of someone with IBD.

This week on Lights, Camera, Crohn’s, Kristin offers insight into how we can approach nutrition and everyday food decisions—whether we’re in a flare or remission.

Food Insecurity and IBD

A growing concern in the IBD community is access to food itself. Research shows that 13.5% of Americans with IBD experience food insecurity, compared to 9% of the general population.

“We know food costs have risen in the past three years, and SNAP benefits have decreased for some, so we can reasonably predict that food insecurity rates are even higher now,” Kristin explains.

Certain groups are disproportionately affected, including individuals who are non-Hispanic Black, uninsured or on Medicaid, or relying on SNAP benefits. Kristin emphasizes that clinicians should routinely screen for food insecurity and take a multidisciplinary approach, bringing in dietitians and social workers to better support patients.

Pain Points from our Community

One of the biggest emotional burdens Kristin sees? Guilt.

Many people with IBD blame themselves, believing they should have been able to pinpoint the exact food that “caused” a flare.

“I try to offer reassurance that active disease is much more complex than just something eaten,” she says. “Diet may play a role, but there are many other factors outside of our control that drive inflammation.”

Beyond that, patients commonly struggle with:

  • Fatigue that makes meal planning feel impossible
  • Limited time or cooking skills
  • The rising cost of food

Dealing with Diet while flaring

Kristin is quick to validate just how difficult eating can be when symptoms are at their worst.

“I struggle to eat well when my disease is active, too,” she shares. “Even water moving through your GI tract can hurt.”

Her approach is not about eliminating discomfort completely—but about minimizing additional irritation and maintaining nutrition while the body heals.

That often means focusing on foods that are easier to digest and gentler on inflamed areas, such as:

  • Peanut butter
  • Greek Yogurt: Select a yogurt with 7 grams or less of added sugar. The least costly way to achieve this while avoiding artificial sweeteners is to buy plain yogurt & flavor on your own. For example, with vanilla extract, fruit, 1 tsp of honey/sugar/maple syrup, which would add 4-6 grams of added sugar.
  • Canned Black Beans/Hummus: You can mash up any canned beans for tolerance. Rinse salted canned beans with water to reduce sodium content.
  • Avocado
  • Hard boiled Eggs
  • Cottage Cheese with fruit: Select cottage cheese that is 2% fat or less (unless trying to gain weight) & free of carrageenan. Select diced fruit in 100% juice to avoid added sugar or artificial sweeteners.
  • Cereal: Select a cereal with 2+ grams of fiber & 4 grams or less of added sugar per serving.
  • Microwave Baked Potato with Olive Oil: Avoid skin if stricture/short bowel/ileostomy or other difficulty with insoluble fiber
  • Unsweetened Applesauce
  • Soft-cooked carrots
  • Slow cooker shredded chicken
  • Smoothies
  • Mashed potatoes

Preparation matters just as much as the food itself. Chewing thoroughly, cooking well, peeling, mashing, or pureeing can all make a meaningful difference.

For those open to more structured approaches, Kristin may suggest:

While these options have stronger evidence in Crohn’s disease, early research suggests potential benefits in ulcerative colitis as well. That said, Kristin is transparent, she knows from firsthand experience, that these approaches can be difficult to tolerate and may take weeks to show results.

“Most of my patients aren’t interested in that level of structure, and that’s completely understandable,” she says. “But people deserve to know these options exist.”

Snacking with IBD

Kristin’s top three snacks are guacamole and chips, Cheerios, and snack cookies.

Snack Cookie Recipe

Serves: 6

Ingredients:

• 2 Ripe Bananas

• 1 egg

• ½ cup nut or seed butter

• ½ TB olive oil

• 1 tsp vanilla extract

• 1 cup Flour of choice (almond, white wheat, whole wheat, etc.)

• ½ tsp baking powder

• ½ tsp baking soda

• ¼ tsp salt

• 2 cups of cereal (ex. Puffed rice cereal, puffed millet cereal, cornflakes)

Directions: Preheat oven to 350 F. Line baking sheet with parchment paper. Add bananas to a large bowl & mash. Add remaining ingredients (except cereal) and mix well. Add cereal and mix well. Drop by 1-1 ½ TB scoops onto baking sheet. Makes 12 cookies. Store any not eaten same day in an airtight container in the refrigerator.

Final Thoughts

Food will never be a perfect science with IBD, and it’s not supposed to be. What matters isn’t control, but connection: learning your body’s cues, honoring its limits, and responding with flexibility instead of fear. Some days that might look like a well-balanced meal; other days, it’s a few safe bites just to get through. Both count. Both matter. Because living with IBD isn’t about getting it “right,” it’s about continuing to nourish yourself, in whatever way you can, even when it’s hard.

Kristin’s list of helpful resources for IBD-friendly recipes:

Gut Friendly Recipes | Crohn’s & Colitis Foundation

IBD-Friendly Recipes & Nutrition | GI Nutrition Foundation

Freebies | Wellness By Food

Pureed Pzazz: Pureed Food Recipes

Chef-Crafted Recipes for Gut Health & IBD Wellness | Chef With IBD

Recipes Recipes – Eat Well Crohn’s Colitis

IBD AID Recipes – Center for Applied Nutrition at UMass Chan Medical School

Quick Easy Recipes – African, Latin American, Asian, Vegetarian & Vegan OLDWAYS – Cultural Food Traditions

What I Wish Every Current and Future IBD Mom Knew

This month marks nine years since I became a mom.

Nine years since my life split into a clear before and after.
Before motherhood.
Before learning how much my heart could stretch.
Before realizing I could love someone so fiercely while still carrying a body that has never felt predictable or safe since my Crohn’s diagnosis in 2005.

I entered motherhood already shaped by chronic illness. Crohn’s disease had been part of my identity for years before I ever held a positive pregnancy test in my hands. I knew what it meant to live with uncertainty. I knew how to navigate flares, fatigue, medications, and fear. What I didn’t know was how those experiences would transform me into an entirely new version of myself—an IBD mom. When I got pregnant, I only knew of one woman, my cousin’s wife, who has Crohn’s, and stayed on her biologic throughout her four pregnancies.

This week on Lights, Camera, Crohn’s a reflection on my patient journey and what it felt like to go through family planning, pregnancy, and motherhood as a woman with IBD and what I want others to know.

When I Was “Just” the Patient

For a long time, my world revolved around survival. Appointments. Side effects. Lab work. Scopes. Injections. Recovery days. Canceled plans. Hospitalizations. Weaning off steroids. Learning how to read my body’s subtle warning signs. Learning when to push and when to rest.

Crohn’s taught me resilience long before I knew I would need it in motherhood. But it also taught me hyper-awareness. A constant scanning of my body for what might go wrong next. A relationship with fear that felt both protective and exhausting. As time passed, I learned to listen to how my body was speaking to me through symptoms.

When I imagined becoming a mom, that fear came with me. I had bowel resection surgery two months after getting engaged, I was planning a wedding, and for the first time after a decade of living with Crohn’s I had FINALLY heard the word “remission” for the first time. My fiancé (now husband) and I knew once we got married 10 months later, that we would need to capitalize on that remission and hopefully start our family while we knew I was well enough to do so. Despite being in remission, I still had many questions and thoughts racing through my mind:

Would I be healthy enough?
Would my medication be safe?
Would I flare during pregnancy or postpartum?
Would my disease rob me of moments I dreamed about?
Would I be hospitalized and away from my child?

…the list went on. If you’re an IBD mom or one day aspire to become one, you know the questions we all face.

I wanted to become a mom more than anything, but I carried quiet doubts about whether my body was capable of sustaining not just a pregnancy, but a lifetime of caregiving.

Becoming a Mom with Crohn’s

The day I became a mom everything shifted. Not because my Crohn’s disappeared. Not because my health suddenly became perfect. But because my why expanded.

Suddenly, my body was no longer just something I endured. It was the home my child lived in.
The vehicle through which I would show up, nurture, protect, and love. That realization changed the way I approached my overall health as a mom with IBD. My pregnancy with Reid gave me a renewed sense of love and appreciation for my body.

Taking my medication wasn’t just about me anymore.
Advocating at appointments wasn’t just self-preservation.
Resting wasn’t weakness.
Prioritizing sleep wasn’t indulgent.

It was parenting. I began to see caring for myself as an extension of caring for my child. That mental shift — from “patient” to “patient who is also a mother” — was subtle but seismic. Rather than waiting until I was too weak to even walk through the emergency doors by myself, I started to alert my care team within days of recognizing that my Crohn’s seemed a bit “off” so that we could nip any issue that arose in the bud.

Learning to Mother Through Difficult Days

Motherhood with Crohn’s is not picture-perfect. But regardless of your health status, there is no such thing as perfect when it comes to being a mom. You must remind yourself of this and give yourself grace.

There are days I have shown up with heating pads tucked under sweatshirts.
Days I’ve read stories from the bathroom floor.
Days I’ve powered through school drop-offs on pure adrenaline and grit.  Days I’ve shown up to PTO meetings and coached soccer on pain medication.
Days I’ve cried because I felt like I was failing at both having a chronic illness and being a mom.

I’ve been in “remission” since 2015, the entire time I’ve been a mom, which I’m eternally grateful for, but just because I’ve been in remission does not mean I don’t face countless struggles with this disease. That’s something I wish people would understand. IBD is a chronic illness, just because someone is in remission doesn’t mean they are free of pain, stress, and more.

I’ve had to learn that good motherhood doesn’t require constant physical perfection. Some seasons look like big adventures and energy. Others look like quiet cuddles, movie days, and choosing rest over outings.

Both count.

My children are being raised by someone who understands empathy, flexibility, and listening to their body. That matters. You’ll notice as a parent with chronic illness how quickly your little ones develop empathy. It’s next level. And so beautiful. You don’t even have to teach it, it’s innate in them because of their daily reality.

Raising a Child Who Understands Illness and Compassion

One of the unexpected gifts of being an IBD mom is watching compassion take root early.

My three children know that bodies work differently.
That medicine helps people live.
That rest is sometimes necessary.
That we don’t judge what we can’t see. They’ve learned that strength isn’t always loud.

Sometimes strength looks like getting up anyway.
Sometimes it looks like asking for help.
Sometimes it looks like choosing yourself.

Those lessons feel just as important as anything in a textbook.

How Motherhood Changed My Relationship with My Body

Before becoming a mom, there were times my body felt like the enemy.

The source of pain.
The reason plans fell apart.
The thing holding me back.

Motherhood complicated that narrative.

This body carried three children.
This body nourished three children.
This body continues to show up, even when it’s tired, inflamed, or aching.

It isn’t perfect.
But it is more than capable.

I still have hard days. But honestly, I have a lot more amazing days. I never take a feel-good day for granted.
Even after more than two decades of living with Crohn’s, there are still moments where I fantasize about what it would be like to just be a healthy person and not have the burden of my disease.

But I also hold more gratitude now. A grounded, honest one. My three children are my greatest motivation to push through and be my healthiest self.

From Surviving to Advocating

Becoming a mom didn’t quiet my voice.

It amplified it. Ironically, this blog, Lights, Camera, Crohn’s, launched July 23rd, 2016… I found out TWO days later I was pregnant with my oldest son, Reid. So, this blog truly captures every moment of pregnancy, family planning, and motherhood from the perspective of someone who learned as I went.

I advocate not only for myself now, but for a future where my children grow up in a world that understands chronic illness better than the one I grew up in.

I speak out because I want fewer people to feel dismissed.
I share stories because I want fewer people to feel alone.
I push for better care because I want better options for the current and the next generation.

I want couples to feel empowered by their decision to have a family, however that may look for them.

I hope women feel comforted by all the constant research going on to address what’s safe and effective as they bring life into this world. I participated in IBD pregnancy studies with all three of my kids, my youngest who turns five in July will be followed through the PIANO study until age 18!

Motherhood turned my survival into purpose.

Nine Years In: Who I Am Now

I am still a patient.
I am still navigating Crohn’s.
I still face uncertainty at times, but through a much different lens.

I am also a mom of nearly a decade.

A mom who has learned how to hold fear and hope at the same time.
A mom who knows that love is not measured in energy levels.
A mom who shows up imperfectly, consistently, and wholeheartedly.

I didn’t become a mother despite Crohn’s.

I became a mother with Crohn’s.

And over the past nine years, I’ve learned that those two identities can coexist, not in conflict, but in strength. I swear I blinked and somehow my sweet Reid, my baby, is nearly double digits. I don’t think there will ever be a time in my lifetime that I don’t stare at all of my children in awe of their existence, I’m sure if you’re a parent you feel the same way. It’s a miracle they are here, healthy, and thriving. So much of why I share my family so openly is to show how my children, who were all exposed in utero to Humira, are doing so beautifully in school, sports, and socially.

To the IBD Moms (and Future Moms) Reading This

You are not broken.
You are not behind.
You are not failing.

You are doing one of the hardest jobs in the world while managing one of the hardest diseases. That deserves recognition.

Later this month, my Reid is nine.

Nine years of learning.
Nine years of adapting.
Nine years of loving fiercely in a body that isn’t always kind.

And I wouldn’t trade this evolution for anything.

IBD Pregnancy Studies

Global Consensus on IBD and Pregnancy

PIANO (Pregnancy in IBD and Neonatal Outcomes) Study

WIsDoM Study: A Study Focused on Female Fertility and Pregnancy

MotherToBaby