Category: Aging and IBD

From Puberty to Menopause: How IBD Care Evolves for Women Across a Lifespan

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As the years go by living with IBD, our health needs change and our IBD care should evolve with us. Women’s health in IBD is about so much more than pregnancy. Symptoms around menstruation, questions about contraception, puberty, sexual health, fertility, menopause, bone health, and cardiovascular health are all legitimate parts of your IBD care. Cedars-Sinai Hospital in Los Angeles, California recently held their second annual Women’s Health in IBD Conference.

Dr. Puja Khanna, MD, spearheads the conference and wanted to share more about the key takeaways and where she sees personalized medicine moving in regard to women’s health now and into the future. This week on Lights, Camera, Crohn’s, Dr. Khanna shares incredible guidance that will leave you feeling empowered as you navigate all the joys of being a female living with IBD.

Personalized IBD care for women

We have become very sophisticated at phenotyping IBD—Crohn’s versus ulcerative colitis, disease location, behavior, biomarkers, and prior medication exposure. But we have been much less sophisticated about incorporating a woman’s life stage into that same personalized approach.

“A 14-year-old navigating puberty, a 28-year-old choosing contraception, a 35-year-old planning pregnancy and a 52-year-old entering menopause may have exactly the same Crohn’s phenotype on paper, but they do not necessarily have the same health priorities or the same risks.”

Dr. Khanna thinks the future of precision medicine in IBD needs to include not only what kind of IBD a patient has, but also where a woman is in her life, and what she needs at that specific life stage.

Navigating hormonal shifts

Hormones can intersect with IBD throughout a woman’s entire life—from puberty and menstruation, through contraception and pregnancy, and into perimenopause and menopause.

“I want women to understand that changes in symptoms do not always mean their IBD is becoming more active. Hormonal shifts can affect bowel habits, fatigue, pain, sleep, and mood, and sometimes those symptoms can look like an IBD flare,” Dr. Khanna explains. “The good news is that we increasingly have tools such as fecal calprotectin, blood markers and intestinal ultrasound that can help us distinguish symptoms from true intestinal inflammation rather than simply guessing.”

Recognizing that your GI team is a safe space

As a woman who has lived with Crohn’s disease for over 21 years, I know from my own personal experience how important it is to feel comfortable bringing these issues up to your GI team. Women’s health and IBD are all part of the comprehensive care you should be receiving. Questions about periods, contraception, sexual health, fertility, menopause, bone health, and even cardiovascular health are all part of comprehensive IBD care.

“I want women to feel empowered. Their health needs are going to change throughout their lives, and their IBD care should change with them. The goal is not simply to control inflammation—it is to help women with IBD stay healthy and thrive through every stage of life,” says Dr. Khanna.

The intersection of each chapter in a woman’s life with IBD

While pregnancy remains incredibly important, it’s important to remember that the child-bearing years are just one chapter in a woman’s life with IBD. It’s becoming increasingly understood that each touchpoint in a woman’s development and aging intersects with IBD in different ways.

Dr. Khanna says, “Research is beginning to reflect that broader view. Recent reviews are specifically looking at IBD from puberty through menopause rather than treating women’s health as synonymous with pregnancy. The next step is translating that into routine clinical care, where we proactively ask women about these issues rather than waiting for them to bring them up.”

Gaining a better understanding of hormones and their impact on IBD

Hormones used to be thought of as almost an on-off switch—more estrogen or less estrogen and perhaps more or less inflammation. We now appreciate that it is far more complicated.

“Estrogen and progesterone interact with receptors on intestinal epithelial and immune cells and may influence intestinal permeability, immune signaling, gastrointestinal motility and even the gut microbiome,” says Dr. Khanna. “At the same time, the microbiome can influence estrogen metabolism through what is sometimes called the “estrobolome.” Genetics, medications, diet, and underlying inflammation are interacting with all these pathways.”

The important caveat is that much of the mechanistic science is ahead of the clinical evidence.

“We understand the biologic plausibility much better than we did a decade ago, but we cannot yet predict an individual woman’s IBD course based on hormone levels.”

Puberty and IBD

Dr. Khanna recommends parents watch out for the overall trajectory rather than any single symptom. Ask yourself:

Is she growing appropriately?

Is she gaining weight?

Is puberty progressing normally?

Are menstrual periods developing normally?

Is she unusually fatigued or becoming iron deficient?

Has her appetite changed?

“Growth failure or delayed puberty can be a manifestation of inadequately controlled IBD, particularly Crohn’s disease. Chronic inflammation, inadequate nutrition, and corticosteroid exposure can all interfere with growth, pubertal development, and the accumulation of bone mass during a period when young women should be building the foundation for their future bone health,” says. Dr. Khanna.

We should not automatically dismiss significant weight loss, delayed puberty, persistent fatigue, or major menstrual abnormalities as simply being part of adolescence.

Dr. Khanna says, “We do not have compelling evidence that puberty itself simply “switches on” IBD activity. In fact, one of the clearest relationships goes in the other direction: uncontrolled inflammation and poor nutrition can delay growth and puberty.”

It’s important to note—sex hormones interact with the immune system, intestinal barrier, and microbiome, so puberty is occurring during a period of tremendous biologic change. What ultimately happens to an individual patient is probably determined by the interaction of hormones with genetics, immune regulation, nutrition, microbiome composition, medications, and the underlying behavior of her IBD.

Symptoms peaking during your period?

This is such an important distinction because more symptoms do not necessarily mean more inflammation. Read that again.

“More than half of women in a large IBD cohort reported worsening symptoms during menstruation, and other studies have shown increases in diarrhea, abdominal discomfort and bowel frequency around the menstrual cycle,” says Dr. Khanna. “Hormonal fluctuations and prostaglandins can change intestinal motility and visceral sensitivity even when the IBD itself remains controlled.”

Dr. Khanna asks her patients about the pattern. If the symptoms predictably occur around every menstrual cycle, resolve as the period ends, and the patient otherwise feels well, that makes a hormonal contribution more likely. If symptoms are progressively worsening, persisting beyond the menstrual window or accompanied by features such as rectal bleeding, nocturnal diarrhea, weight loss, or persistent systemic symptoms, she becomes more concerned about inflammatory activity.

“A predictable, short-lived pattern that happens at approximately the same point in every cycle and then returns to baseline is reassuring, particularly in someone whose IBD has otherwise been objectively well controlled,” she explains.

Dr. Khanna says she would want a patient to contact her when something is different from the usual pattern:

  • Symptoms are becoming progressively more severe
  • Symptoms continue well beyond the menstrual period
  • Development of new rectal bleeding
  • Persistent nighttime symptoms,
  • Fever
  • Weight loss
  • Dehydration
  • Significant anemia or fatigue
  •  Not returning to baseline

“One of the messages I want women to hear is: you do not have to decide on your own whether this is hormones or IBD. That is exactly where objective monitoring can help,” says Dr. Khanna.

Diagnostic tools that help make the distinction between hormonal symptoms and inflammation

Fecal calprotectin is particularly useful because it gives a relatively noninvasive measure of intestinal inflammation. Your GI can also look at blood markers such as CRP, although CRP is not equally sensitive in every patient.

“Intestinal ultrasound is another exciting tool because it allows us to look directly for features of bowel inflammation—such as increased bowel-wall thickness and vascularity—without radiation and often right in the clinic. Depending on the situation, cross-sectional imaging or endoscopy may also be appropriate,” says. Dr. Khanna.

The larger point is that modern IBD care increasingly allows doctors to separate symptom burden from inflammatory burden. That distinction is extremely important for women whose symptoms fluctuate with hormonal transitions.

Hormonal contraception and IBD activity

Overall, Dr. Khanna says there is not convincing evidence that hormonal contraception consistently causes established IBD to flare. Older cohort data and European guidelines have generally been reassuring, although a 2025 systematic review emphasized that the available studies are heterogeneous and the certainty of the evidence remains low.

“For me, the bigger issue with estrogen-containing contraception is often not disease activity but blood-clot risk. IBD itself increases the risk of venous thromboembolism, particularly during active disease, hospitalization, surgery, or corticosteroid exposure. The CDC therefore recommends individualized assessment before using combined estrogen-containing contraception in women with IBD who have additional thrombotic risk factors,” explains Dr. Khanna.

Long-acting options such as an IUD or implant can be excellent choices for many women.

“We also must think about bone health when considering depot medroxyprogesterone and about absorption of oral contraception in women with significant small-bowel disease or extensive resections. The contraceptive conversation should really be individualized.”

Emerging data on perimenopause and IBD

During perimenopause, estrogen and progesterone do not simply decline in a straight line—they can fluctuate considerably.

Dr Khanna says, “Those hormonal changes may affect intestinal motility, visceral sensitivity, immune regulation, intestinal barrier function, and the microbiome. That creates the potential for changes in GI symptoms even when inflammatory disease activity has not changed.”

But we need to be very clear about the limitations of the evidence. A recent systematic review found only 15 studies addressing menopause and IBD, and most women did not report a major change in their IBD after menopause, although a subset did worsen. We need much more prospective research during the actual perimenopausal transition.

The overlap between perimenopause and IBD symptoms

There is tremendous overlap, which is exactly why this can be challenging.

“Fatigue can come from active inflammation, anemia, poor sleep, or menopause. Joint pain can be an extraintestinal manifestation of IBD, but musculoskeletal symptoms also become common during the menopausal transition. Bowel habits can change because of IBD, but hormones can also influence motility and visceral sensitivity.”

Dr. Khanna says instead of attributing everything to either IBD or menopause, she prefers to ask two questions simultaneously: Could her IBD be active, and could menopause be contributing to how she feels?

“We can then use her clinical pattern together with CBC, iron studies when appropriate, CRP, fecal calprotectin and sometimes intestinal ultrasound or endoscopy to determine whether inflammation is actually present.”

Just like disease journey, menopause is experienced uniquely, too

Biologically, two women are not experiencing the same transition. They may have different IBD phenotypes, different levels of baseline inflammation, different prior surgeries, different medications, different microbiomes, different genetic susceptibility and different responses to estrogen and progesterone signaling. One woman may also have overlapping IBS, pelvic-floor dysfunction, or musculoskeletal symptoms that another woman does not.

Even the hormonal transition itself varies enormously between women.

“That heterogeneity is one of the reasons I do not think we will ever have a simple statement that “menopause makes IBD better” or “menopause makes IBD worse.” The 2025 systematic review reflects that variability: most women had no major change, while subsets reported worsening or improvement,” Dr. Khanna says.

Hormone Replacement Therapy and IBD—Yay or nay?

The available evidence is reassuring, but it remains limited.

“An older study suggested less IBD activity among postmenopausal women using hormone therapy, and a more recent multicenter retrospective study also found improvement in physician-assessed disease activity after HRT. The newest systematic review concluded that hormone therapy may reduce flare severity but emphasized how limited the evidence remains.”

Dr. Khanna says she would not prescribe hormone therapy as a treatment for IBD, because we do not have evidence to support that. But having IBD by itself should not automatically exclude a woman from receiving appropriate treatment for bothersome menopausal symptoms.

This is a shared decision involving the patient, her women’s health provider and, when appropriate, her gastroenterologist. Remember it’s a team approach—keep your providers in the loop and don’t silo your “women’s health issues” to one provider, make sure your gastroenterologist knows what you’re experiencing, too.

Considerations for Estrogen-containing therapy, progesterone, or menopausal treatments

Women with IBD already have an elevated risk of venous thromboembolism (blood clots), particularly when their disease is active. Oral estrogen can also increase thrombotic risk. For women with increased VTE risk, data from the broader menopause literature suggest that transdermal estradiol has a more favorable thrombotic profile than oral estrogen.

“We also consider whether the woman has a uterus, because systemic estrogen generally requires an appropriate progestogen to protect the endometrium, as well as her age, time since menopause, cardiovascular history, smoking, prior thrombosis, breast-cancer risk, migraine history, bone health and current IBD activity,” explains Dr. Khanna.

So, it should not be “IBD equals no hormones.” It should be a thoughtful, individualized risk-benefit assessment.

Being Proactive with Bone Health

IBD can affect bone health through chronic inflammation, malnutrition, low body weight, and corticosteroid exposure, and then menopause adds the accelerated bone loss associated with declining estrogen.

Current AGA guidance recommends considering bone-density testing in people with IBD who have risk factors including low BMI, more than three cumulative months of corticosteroid exposure, smoking, hypogonadism, or postmenopausal status. Even in the absence of additional risk factors, bone densitometry should be considered in postmenopausal women with IBD.

I personally have had a “bone health doctor” for the past four years. It blows my mind how many people with IBD I speak to who never had a baseline bone scan. My first bone scan was at age 26. Bring this up to your GI, it’s important to be proactive rather than reactive. Now, at 43, given my history of Crohn’s, anemia, past steroid exposure,  and my age, I get a bone scan every two years.

“I also think about vitamin D status, adequate calcium intake—preferably through diet when possible—regular weight-bearing and resistance exercise, adequate protein, minimizing unnecessary steroid exposure, avoiding smoking, fall prevention and treating osteopenia or osteoporosis when indicated,” says Dr. Khanna.

For women with IBD, bone health should become part of the menopause conversation before the first fracture occurs.

Working together across specialties

One of the biggest gaps in medicine has been that women with IBD have often had to navigate their gastroenterological health and their women’s health in parallel rather than together.

That is beginning to change.

“We are learning that hormonal transitions can influence symptoms, immunity, the intestinal barrier, the microbiome, bone health, cardiovascular risk and quality of life—but we also have to be careful not to attribute every change a woman experiences to hormones.”

Dr. Khanna says the opportunity now is to build a model of care where gastroenterology and women’s health truly intersect across the lifespan.

“That means asking better questions, using objective measures of inflammation when symptoms are ambiguous, collaborating across specialties and making sure women have the information they need to advocate for themselves. For me, that is really the future of women’s health in IBD.”

One final piece of advice

I asked Dr. Khanna if she could give women with IBD one piece of advice about navigating their disease through puberty, menstruation, pregnancy, perimenopause, and menopause, what she would want them to know.

“I would tell them: Do not assume that every symptom is your IBD but also do not assume that everything is “just hormones.” Ask the question and let us help you figure it out.”

When it comes to future IBD and Women’s Health Conferences through Cedars-Sinai, Dr. Khanna would love to expand the reach of the program well beyond the women who can physically attend a conference in Los Angeles.

“We are exploring virtual collaborations and opportunities to connect with colleagues and patients in other communities so that education around women’s health and IBD can become more accessible. I would like to see women’s health become an integrated part of excellent IBD care everywhere—not a niche topic or something we discuss only when a woman becomes pregnant.”

What If You Never Had to Forget What Your Doctor Said Again? Babble Puts Patients in Control

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

You’re in the doctor’s office with a thousand thoughts flying through your mind as your provider asks questions and shares intel that you’re trying to remember but can’t keep up. You nod and appear to be fully engaged and listening, but you walk out feeling a bit confused and unclear of next steps. We’ve all been there. That’s where a new app called “Babble” comes to save the day. To advocate for yourself, you first need to understand your own health story. This week on Lights, Camera, Crohn’s we hear firsthand from the co-founder of Babble and why she felt the need to create this cutting-edge tool for patients and caregivers.

How Babble was born

Jessica Bieligk, co-Founder of Babble, can pinpoint two experiences that really drove her to try and create a healthcare solution. She was volunteering to drive some of her older neighbors to their doctor’s appointments and through that she witnessed how challenging it was to capture what the doctor said and then effectively communicate it back to adult children or caregivers in the room.

“In parallel, I was managing healthcare for myself and my three young children. I was constantly scribbling questions on pieces of paper, trying to take notes on my phone, forgetting what a doctor had told me months earlier, or calling my husband after an appointment and trying to recreate a conversation from memory,” Jessica says.

The combination of the two made her realize that there was an opportunity to make this easier for patients and their families. We didn’t have to carry as much of the mental burden – patient-owned technology should be able to help us.

What does “Babble remembers, so you don’t have to” really mean in practice?

We can all relate to how it feels when you’re sitting in an appointment telling yourself I need to remember this. Jessica wants people utilizing Babble to be engaged listeners who are asking questions and being present without the added, unnecessary pressure.

“Babble can capture the conversation and turn it into a clear summary with the important takeaways and next steps,” she explains. “That summary becomes part of your health story, so three months later you’re not trying to remember, What did my GI say about that medication? When was I supposed to follow up? Why did we decide to change treatment?”

Babble remembers, so your brain doesn’t have to be the medical record.

Breaking down the process

Babble app developers have broken the experience on Babble to three simple steps.

Prepare → Capture → Share.

Before the visit, you can create the appointment and add the questions or concerns you want to discuss. Babble even provides some suggested questions based on your initial input. That alone can make an appointment more productive because you’re not trying to remember everything once the doctor walks into the room – there’s a simple “cheat sheet” from the app.

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During the visit, with permission, you use Babble to capture the conversation. Instead of frantically taking notes, you can focus on the discussion, make sure you ask the questions that matter to you and truly engage with the doctor to feel confident in your care.

Afterward, Babble turns that conversation into a clear, easy-to-understand summary with the important information and next steps. It becomes a chapter in your health story and you’re able to easily share it with someone in your care circle who you want in the loop.

“This capsule approach hopefully ensures your questions are answered and you’re able to have a simple way to refer to what you discussed with the doctor. The goal is that the content of the appointment doesn’t disappear the moment you leave the exam room and that you’re able to keep others informed, even if they can’t be in the appointment directly,” says Jessica.

What sets Babble apart

Notes on your phone are only as good as what you manage to type while you’re also trying to listen, process information and ask questions. We’ve heard from patients with chronic illness that sometimes they feel like they have to choose between listening to the doctor and documenting what the doctor says.

Patient portals solve a different problem. They’re incredibly useful, but they’re generally organized around a provider or health system. Your GI might be in one system, your dermatologist in another, and another specialist somewhere else.

“Babble is organized around you – the patient- and is a simple experience that lets you keep your health story in a single place. It’s your record of what you discussed, what you understood and what you’re supposed to do next — across doctors, specialists and health systems,” Jessica shares.

There are an abundance of AI note-taking tools out on the market right now. Those are great and can work well for many people. Babble is a secure, healthcare focused and intentionally designed experience where all your health information is owned by you, in one place and easy to access when you need it.

Leveraging the conversations between providers and patients

Babble leverages AI to transcribe the audio from the conversation with the doctor and then create a simple summary of key themes and takeaways.

Babble can take that conversation and create a clear, structured summary that helps you understand what was discussed and what happens next. And because you retain those summaries, the value compounds over time. You’re not just creating notes from individual appointments. You’re beginning to build a health story.

Doing the “homework” before the appointment

Preparation is an important part of Babble and an important part of care, especially when there are multiple stakeholders involved.

Before an appointment, you can put the questions and concerns that have been floating around in your head, or questions your family members have asked you, into one place. Instead of remembering something important in the parking lot afterward, you go into the appointment knowing what you want to cover.

“One of the things we’ve heard in testing is that people love the idea of Babble becoming the place where their pre-appointment thoughts live. And we’ve created an experience where you can create a starting point and add and adjust as you get closer to the appointment and may have new questions or concerns,” says Jessica.

Ultimately, using Babble should help you get more of the limited time you have with your doctors. You can be more efficient and effective in communicating your concerns up front and then have clarity following each appointment.

“While we’ve built Babble for patients, so many of the physicians we’ve met with through our research are excited about how it can help them deliver better care for their patients,” Jessica adds.

Sharing your health story with loved ones

Sharing is core to what Babble is building, and Jessica says it’s one of her most used aspects of the app – it’s become indispensable in keeping her and her husband on the same page with their children’s care.

The experience is simple, once a user receives the visit summary, they can select to share that summary with a person of their choosing. That might be a spouse, an adult child, a sibling or another caregiver. The designated individual will receive an email with the summary so they can get up to speed in just a minute.

Jessica and her family. As a busy mom, Babble has helped her keep track of all her family’s healthcare needs.

“Longer term, we hope to build in functionality so that users are able to collaborate across a care story (i.e. adult children coordinating a parent’s care) but we’re starting simple with the email,” says Jessica. “We’ve heard this need across generations: college students trying to explain an appointment to parents hundreds of miles away, adults coordinating care for aging parents, and parents trying to make sure both spouses understand what the pediatrician said.”

Instead of playing a game of telephone, everyone can work from the same information.

Addressing the hesitation around AI in healthcare

Hesitation is healthy. Healthcare information is incredibly personal, and Babble has been built in that reality. Babble is inspired by HIPAA-requirements and data security, and privacy have been priorities from the beginning.

“First, the patient is at the center of the product. Your information belongs to you, and you decide whom you share it with,” explains Jessica. “We don’t retain the audio recording after it has been processed, and your summaries are private to you unless you choose to share them.”

It’s also important to be clear about what Babble’s AI is, and isn’t, doing.

“Babble isn’t your doctor. It isn’t diagnosing you, prescribing treatment or replacing medical advice. We’re using AI to help you better capture, organize and understand the information from your actual healthcare conversations. It’s the communications superpower,” says Jessica.

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The use of AI here is supporting the patient, not replacing the provider and users are reminded throughout the app experience that they should always confirm with their provider if they are confused by any of the notes.

A helpful tool for those with multiple specialists

The past few months, Jessica has collaborated with me and tapped into the Lights, Camera, Crohn’s community for product development and feedback from fellow patient advocates to better understand how Babble can support those us of navigating chronic illness. I personally have been appreciative of how genuinely invested Jessica has been in capturing what matters from the patient perspective.

“Patients have told us they’re exhausted by having to “start over” and reconstruct their history every time they see someone new,” says Jessica. “Babble gives the patient continuity even when the healthcare system doesn’t. Over time, your individual appointment summaries become a longitudinal health story that stays with you.”

We may have a gastroenterologist, primary care physician, dietitian, surgeon, dermatologist or other specialists involved in our care. Those providers may not share the same system, and each appointment is only one chapter. Babble helps take some of the pressure of coordinating care across specialists off our shoulders.

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“Over the last year, we’ve relied on the feedback and reactions from parents, older adults, caregivers, college students and people managing complex or chronic conditions…and doctors, too. Despite very different circumstances, we keep hearing versions of the same things: “I remember the big picture but lose the details,” “My records are everywhere,” “I end up getting calls after hours from family members,” and “I don’t want to spend the appointment taking notes,” says Jessica.

Helping Caregivers stay in the know

Caregiving was one of the original inspirations for Babble. So much caregiving is really information and communication management: What did the doctor say? Did the medication change? When is the follow-up? What symptoms are we supposed to watch? Did anyone tell my sister?

And often the person managing all of this wasn’t even at the appointment.

“One caregiver we interviewed described receiving secondhand information from a sibling who accompanied the parent to appointments. Another talked about the anxiety of managing a parent’s medication instructions after missing the appointment because of work,” Jessica recalls. “I want Babble to reduce that burden. The person who attends the appointment can capture it, and the people helping with care can receive a clear summary, with the patient’s permission, rather than trying to reconstruct what happened.”

Looking into the future

On day one, Babble helps you have a better appointment. Six months later, it starts helping you understand your holistic health story. A year later, imagine being able to look back and clearly understand: Here’s what I was experiencing. Here’s what we discussed. Here’s what we tried. Here’s what changed. Here’s what my different specialists told me.

Instead of healthcare, feeling like a series of disconnected encounters, you have continuity and an integrated look across the providers and conditions you’re managing.

“That’s why our invitation to patients is: Start writing your health story with Babble,” says Jessica.

Subscribing to Babble

Babble is a subscription product because the creators made a deliberate decision to build a business where the patient is the customer.

“We don’t want the business model to depend on selling patient data or monetizing people’s health information. We want to build and continually improve a product that works for the patient,” says Jessica.

Everyone will be able to record their first visit free, so you can experience Babble before deciding whether it’s valuable enough to keep using. Then users can opt into a $4.99/month subscription that gives you access to tracking unlimited appointments (for you and as many others as you’d like to manage).

For the Lights, Camera, Crohn’s Community, for anyone that signs up in the month of October, the first month is FREE!

Final thoughts

Healthcare can feel overwhelming enough without having to remember every question, every medication change, every recommendation and every next step once you walk out of the exam room.

For people living with chronic illness and caregivers and loved ones helping them navigate it, that mental load can add up quickly. We shouldn’t have to rely on memory, scattered notes or a game of telephone to understand our own healthcare.

That’s what makes the idea behind Babble so compelling. It’s not about replacing your doctor or turning AI into your healthcare provider. It’s about using technology to help you listen, understand, remember and stay connected so you can spend less time trying to document your care and more time participating in it.

Because your health story shouldn’t live in a dozen patient portals, a stack of notes or someone’s memory.

It belongs to you.

And when you can walk out of an appointment knowing what happened, what comes next and how to explain it to the people who support you, that’s more than better notetaking. It’s a little more clarity, a little more confidence and, ultimately, a little more control over your healthcare journey.

Short Bowel Syndrome: The Complication Many IBD Patients May Not See Coming

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For someone living with Crohn’s disease, surgery can feel like a necessary reset button. The diseased portion of your intestine is removed, you recover, and you hope your body and your life will settle into a new normal.

But what happens when too much intestine is removed, or the remaining intestine can no longer absorb what your body needs?

That’s where short bowel syndrome (SBS) comes in.

SBS occurs when the small intestine is too short or isn’t functioning well enough to adequately absorb the fluids, electrolytes, nutrients, and calories the body needs. For people with Crohn’s disease who have undergone multiple intestinal surgeries, SBS is a potential complication that deserves more attention.

When 18 inches of my small intestine were removed in 2015, SBS was never mentioned as something I might need to think about if future surgeries became necessary. And that got me wondering: How many other people living with IBD aren’t aware of this?

This week on Lights, Camera, Crohn’s, we’re taking a closer look at SBS: what it means for people with IBD, how it can affect quality of life, what treatment options are available, and what patients and caregivers should know so they can recognize the signs and advocate for the care they need.

What exactly is short bowel syndrome?

The small intestine plays a huge role in keeping us nourished and hydrated. It absorbs nutrients from the foods and liquids we consume and helps our bodies get the building blocks they need to function. When someone has SBS, there isn’t enough functional small intestine to adequately perform that job.

SBS can develop after surgical removal of the small intestine because of conditions including Crohn’s disease, other forms of IBD, cancer, blood clots, or traumatic injury. It can also occur in people who are born with a shortened or incompletely developed small intestine.

According to the Short Bowel Foundation, SBS is a rare condition affecting 20,000 people in the United States.

Much like IBD, A person with SBS may look completely healthy on the outside while dealing with fatigue, abdominal symptoms, frequent bathroom trips, diarrhea, difficulty maintaining weight and ongoing challenges with hydration and nutrition.

Dr. Sukanya Subramanian, MD, Medstar Georgetown University Hospital, is a small bowel adult transplant gastroenterologist and specializes in intestinal rehab. She says diagnosing SBS can be a challenge.

“For example, Crohn’s disease is much more recognizable with endoscopic, microscopic, and laboratory criteria. There isn’t an absolute unequivocal test that tells you that you do or don’t have short bowel syndrome. Sometimes people are in the ambiguous zone, and we have to estimate length of bowel, do testing of absorptive capacity, evaluate transit times of food through the remaining intestine and consider this in the context of symptoms and lab data to make inferences about the diagnosis.”

Short bowel doesn’t automatically mean short bowel syndrome

There isn’t a simple blood test, scan or single diagnostic test that says, You have SBS.

Short bowel is described as having fewer than approximately 180–200 centimeters of small intestine, but the number alone doesn’t tell the whole story.

Think about it this way: two people could have the same amount of intestine remaining but have very different experiences.

The amount of bowel someone started with can vary. A smaller person may naturally have less intestine than a much taller person. And someone may technically have more than 200 centimeters of intestine remaining but still experience significant problems if their bowel isn’t functioning properly.

That’s why length isn’t the only consideration. Function matters.

Healthcare providers need to consider whether the remaining intestine can absorb enough fluid, electrolytes, and nutrients to maintain adequate hydration and nutrition.

SBS should be on the radar for someone with a history of intestinal surgery who is experiencing ongoing loose stools, difficulty maintaining weight or challenges staying adequately hydrated.

Why Crohn’s patients should know about SBS

Life with Crohn’s is unpredictable and ongoing inflammation, strictures, fistulas, obstructions, and other complications can lead to surgery. While removing diseased bowel can be lifesaving and dramatically improves someone’s quality of life, every intestinal surgery can change the anatomy and function of the digestive system. For example, if someone has their ileum removed, they become vulnerable to fat malabsorption, meaning that bile salts can’t be recycled to the liver.

For patients who have had multiple resections, it’s important to understand that there can be consequences beyond the recovery period.

The question isn’t simply, “How much intestine do I have left?” It’s, “How well is the intestine I have left working?”

Dr. Subramanian says, “Length of remnant bowel is not the sole determining factor in the diagnosis of SBS. The quality of the remaining bowel is very important. Intestinal ischemia, active Crohn’s disease, Crohn’s fibrosis, and intestinal dysmotility are co-existing conditions that can impact the capacity of the bowel.”

This is a conversation worth having with your gastroenterologist, particularly if you’re experiencing persistent diarrhea, dehydration, nutritional deficiencies, or difficulty maintaining your weight after intestinal surgery.

Treatment starts with nutrition and hydration

When someone is first diagnosed with SBS, the immediate priority is getting the patient out of crisis and stabilized.

That can sometimes mean an escalation of care to make sure the person receives the fluids, electrolytes, and nutrition they need. Once someone is stable, the goal is to gradually optimize their intestinal absorption, and when possible, dial back the level of parenteral or intravenous support required.

“Dietary modifications are crucial to achieving enteral autonomy and far too often are treated as an afterthought during a clinical visit, explains Dr. Subramanian. “The dietary recommendation for each patient depends on their anatomy, mainly whether there is a colon present and if it is in continuity with the rest of the bowel. It is important that each patient with SBS work with their local care team to identify and address their unique needs.”

Some people can meet their nutritional needs by eating and drinking by mouth. Others may require nutritional support through a vein, known as parenteral nutrition.

Someone with SBS may assume that drinking more plain water is the obvious solution to frequent diarrhea or dehydration. But depending on the individual, simply increasing water intake may actually make symptoms worse.

That’s why some patients may need oral rehydration solutions specifically designed to help the body absorb fluids and electrolytes more effectively.

There is no “perfect SBS diet”

Nutrition counseling for SBS should be individualized and physician and patient priorities should be aligned.

A healthcare provider may consider:

  • What foods is the person eating now?
  • What foods do they tolerate?
  • What foods are important to them? Are there cultural considerations?
  • What are their nutritional needs?
  • What are their symptoms?
  • What changes are realistic?
  • What are the patient’s non-negotiables?

A treatment plan that completely ignores quality of life may look perfect on paper but may be challenging for a person to sustain. The goal should be to find an approach that supports nutrition and hydration while still honoring the person dealing with the diagnosis and setting them up for success.

Medications can help manage symptoms

Nutrition and hydration are the foundation of SBS care, but medications may also play an important role.

Antidiarrheal or antimotility medications can slow the movement of food through the intestine, which may help manage the diarrhea that frequently accompanies SBS.

Acid-reducing medications may also be used to decrease stomach acid that can contribute to damage of the intestinal lining and affect absorption.

And there is another important medication to know about: teduglutide, a GLP-2 analog.

Teduglutide is currently the only FDA-approved medication specifically for SBS. Unlike medications that primarily address symptoms, it is considered a disease-modifying treatment. It works by promoting structural and functional changes in the intestine, slowing intestinal transit, and improving nutrients and fluid absorption.

“Teduglutide has changed the paradigm of treatment of SBS because it is disease modifying; it structurally changes the bowel,” says Dr. Subramanian. “It doesn’t just slow transit; it enhances the capacity of the intestine to absorb. Patients have to be able to eat though in order for this treatment to be effective.”

Living with SBS can feel isolating

One of the most difficult parts of any invisible illness is explaining something that other people can’t see. People living with SBS and their caregivers and family members can benefit from connecting with others who understand the realities of the condition. SBS is not as dismal of a prognosis as it used to be. Support groups, advocacy organizations, and educational resources can help patients feel less alone and better equipped to advocate for their care.

If you or someone you love is living with short bowel syndrome, education and support can make a meaningful difference. The Med-IQ Short Bowel Syndrome Patient and Caregiver Education Resource Hub offers educational materials, links to patient advocacy and caregiver resources, and a clinical directory to help people find SBS care.

Thanks @mediqcme. Supported by an educational grant from Takeda Pharmaceuticals, U.S.A., Inc. 

Join me LIVE on Instagram TONIGHT (Monday, September 21) at 7 PM CT for an in-depth conversation with Dr. Subramanian about SBS—what it means for patients, the latest strides in care, and what patients and caregivers need to know. We’ll break down the questions you may have, the treatment landscape, and how people living with SBS can better advocate for themselves.

Med-IQ is conducting a survey about SBS and they are giving away FIVE, $100 VISA gift cards. You can participate in the survey and enter to win here: https://survey.alchemer.com/s3/8986041/Natalie-Hayden

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

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

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

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

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

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

A Crohn’s diagnosis at 14

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

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

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

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

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

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

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

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

Would she ever be able to become a mom?

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

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

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

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

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

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

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

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

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

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

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

Seeing a gap in IBD research

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

That interest eventually led her to major in sociomedical sciences.

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

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

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

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

And the missing piece matters.

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

Could uncertainty itself be affecting women emotionally?

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

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

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

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

That question became central to her research.

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

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

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

Motherhood doesn’t end at delivery

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

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

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

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

But the stories aren’t exclusively difficult.

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

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

The decisions women make behind the scenes

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

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

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

What Grace wants doctors to talk about earlier

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

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

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

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

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

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

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

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

Grace hopes her research changes the conversation

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

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

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

“You will survive some of your biggest fears”

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

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

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

You don’t have to control everything.

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

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

To the young woman with IBD dreaming about motherhood

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

“Advocate for yourself and ask questions.”

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

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

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

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

Her research is an important step toward answering it.

Interested in participating in Grace’s research?

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

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

Join the study here!

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

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

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

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

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

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

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

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

The inspiration behind Mirae

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

The team behind Mirae

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

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

The “Aha” Moment

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

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

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

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

Anuj Patel, co-founder and CEO of Mirae Health

The Missing Puzzle Piece in Patient Management

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

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

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

Mirae aims to change that.

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

Answering the Call as Patients Feel Overwhelmed and Unheard

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

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

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

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

A Step Toward Personalized Medicine and Treatment Options

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

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

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

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

The App Is Free—How?

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

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

Making Patients Active Participants in Their Care

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

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

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

The Power of Pre-Visit Notes

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

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

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

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

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

Input from Medical Providers and IBD Patients

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

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

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

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

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

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

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

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

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

What Sets Mirae Apart from Other IBD Apps?

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

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

The Goal Five Years from Now

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

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

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

Final Thoughts

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

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

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

Download Mirae for FREE! Learn more about Mirae here.

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

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New research published in Clinical Gastroenterology and Hepatology offers a glimpse into what Crohn’s disease may look like before it officially begins and the findings could have major implications for how we understand, monitor, and potentially prevent the disease in the future. As an IBD mom of three kids ages 8, 7, and 4, research like this always feels a bit bittersweet. While I’m grateful for the strides in research, I’m apprehensive about the burden and grief I would feel if I was able to know if my children would one day receive the same diagnosis.

As someone diagnosed with Crohn’s at age 21, I’m grateful for my two decades of blissful, perfect health. Had I known a complicated chronic illness would one day riddle my body, I’m not sure how I would have coped and dealt with that news.

This week on Lights, Camera, Crohn’s a look at what the latest research discovered, the complicated emotions IBD parents may feel, and what the future may hold for us all as a community.

Why This Matters: Crohn’s May Start Long Before Diagnosis

The study found that certain immune responses in the blood, specifically elevated IgG antibodies targeting a conserved region of bacterial flagellin (a protein found on gut bacteria) were present years before people were diagnosed with Crohn’s disease. In other words, the immune system appeared to be reacting to gut bacteria long before symptoms like abdominal pain, diarrhea, or weight loss ever showed up.

This study followed 381 first-degree relatives of Crohn’s patients, 77 of whom went on to develop the disease. Among them, 28 (more than a third) had elevated antibody responses.

One of the most important takeaways from this research is the timing. Most Crohn’s biomarkers are identified after the disease is active. This study, however, suggests that immune dysregulation may begin well in advance of clinical disease. This supports the idea that Crohn’s develops gradually rather than suddenly.

That distinction matters. If Crohn’s truly has a long preclinical phase, it opens the door to earlier monitoring and potentially earlier intervention, especially for people who are already at higher risk, such as first-degree relatives of those living with Crohn’s disease. A first degree relative is a parent, child, or sibling.

According to the Crohn’s and Colitis Foundation, 36% of children born to two parents with IBD will develop the condition at some point during their life. The risk is substantially less when only one parent has IBD, with The National Human Genome Research Institute sharing there’s a 7-9% chance.

A Potential Blood Test for Risk, Not Diagnosis (Yet)

It’s important to be clear: this is not a diagnostic test and it’s not something patients can request from their doctor today. But it does raise the possibility that, one day, blood-based immune markers could help identify those who are more likely to develop Crohn’s before symptoms begin.

For families affected by IBD, this kind of risk stratification could be meaningful. Instead of waiting years for symptoms to escalate, or for damage to occur, high-risk individuals might one day be monitored more closely or offered early preventive strategies. As an IBD mom, I feel as though I would struggle with knowing whether this was something I wanted to dig deep for, while also not wanting to get in the way of stopping disease progression. It’s not a black and white situation by any means. If these types of blood tests are available when my kids are teenagers, and I were to get results that broke my heart, I’d feel obligated to be transparent and share—would I really want my kids, who have witnessed me living with Crohn’s their whole lives, to know this would one day be part of their own story? It stresses me out just trying to imagine it.

What This Could Mean for Prevention Research

Another compelling aspect of the study is that the immune response was directed at a conserved portion of bacterial flagellin. This means it’s shared across many gut bacteria. That finding has sparked discussion about whether future therapies or vaccines could target these immune pathways in people who are high risk for Crohn’s.

While prevention remains a long-term goal rather than a current reality, this research reflects a broader shift in IBD science: moving upstream to understand why Crohn’s starts, not just how to treat it once it’s already established, and as an IBD mom I am certainly grateful for that.

What This Doesn’t Mean (Yet)

As exciting as this research could be, it’s not a crystal ball. Not everyone with these immune markers will develop Crohn’s, and many people with Crohn’s were never tested years before diagnosis. Larger studies are still needed to validate these findings across diverse populations and to determine how predictive these markers truly are.

For now, this study adds another piece to the puzzle, one that reinforces what many patients already know intuitively: Crohn’s disease doesn’t start the day you’re diagnosed.

The Bigger Picture

Our community often experiences years of delayed diagnosis, misattributed symptoms, and unanswered questions, so research like this matters. It shifts the narrative from “why didn’t we catch this sooner?” to “how early can we understand and intervene?”

While we’re not there yet, this study represents an important step toward a future where Crohn’s disease is identified earlier, monitored more thoughtfully, and one day possibly prevented altogether.

For parents living with IBD, research like this can carry an added emotional burden. The idea that Crohn’s disease may be detectable years before symptoms begin can stir complicated feelings, especially for those who worry about whether they’ve passed on a genetic risk to their children. Some parents may want every possible tool to protect their child’s future health, while others may find the thought of early testing anxiety-provoking or guilt-inducing. There’s no right or wrong response. I get it and struggle with how I’d handle this, too. Living with IBD already requires navigating uncertainty, and this research underscores how deeply personal decisions about risk, knowledge, and monitoring can be for families. As science moves forward, it will be just as important to support parents emotionally as it is to advance early detection tools.

Additional Research

Crohn’s Disease May Be Detectable Years Before Symptoms

Familial and ethnic risk in inflammatory bowel disease – PMC

Targeting Disease Prediction and Prevention: The New Frontier in IBD

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

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

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

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

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

Why Nutrition Matters Beyond the Gut

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

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

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

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

Key Takeaways from Neha’s Presentation

Gut Health

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

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

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

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

Muscle Health

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

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

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

Bone Health

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

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

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

Nutrition Across Life Stages

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

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

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

The Role of an IBD-Specialized Dietitian

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

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

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

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

Final Thoughts

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

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

Connect with Neha on Instagram: @nehagastrord

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

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

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

Firsthand advice for pediatric IBD caregivers

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Additional feedback for pediatric patients

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Prep Hacks for Adult Patients

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

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

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

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

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

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

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

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

“Wet wipes and diaper cream are super helpful!”

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

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

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

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

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

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

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

“Have a bidet and diaper cream ready.”

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

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

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

“Savory liquids to balance out the sweet!”

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

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

“Gummy bears/worms!”

“Pill prep has been a gamechanger for me!”

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

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

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

“Use nuun electrolyte drink instead of Gatorade!”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Takeaway

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

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

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

Magnesium Deficiency in IBD Patients and the Role of Natural Support

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

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

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

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

The power of Magnesium

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

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

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

The Magnesium–IBD Connection

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

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

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

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

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

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

Hollie’s Health Journey

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

Screenshot

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

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

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

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

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

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

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

How to Naturally Raise Your Magnesium

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

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

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

Can You Take Magnesium with Crohn’s or Colitis?

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

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

Final Thoughts

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

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

Learn More About Sweet Bee Organics

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

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

Additional resources:

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

IBD and Magnesium | InflammatoryBowelDisease.net

Magnesium for ulcerative colitis: Benefits and more

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

Malnutrition in Ulcerative Colitis: 6 Common Vitamin and Mineral Deficiencies

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

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

Cardiac Complications in the IBD Population

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

Cardiovascular Risks in IBD

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

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

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

Cardiovascular Considerations for IBD Therapies

Anti-TNF Therapy

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

JAK Inhibitors

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

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

For patients starting on JAK inhibitors, clinicians should:

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

S1P Receptor Modulators

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

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

Clinical Implications

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

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

Closing Summary

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

Additional resources:

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

The risk of cardiovascular complications in inflammatory bowel disease – PMC

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

Heart Disease and IBD: Understanding the Connection | MyCrohnsAndColitisTeam

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