An overview on Artificial Intelligence in Medical Research

by Akhil Shridhar (India)

A photo of a laptop with multi-colored computer code on the screen.

As an Inflammatory Bowel Disease (IBD) patient and someone who works in the technical field, I'm often curious about the use of new technology in the diagnosis and management of our condition. With seemingly new advancements happening at a breakneck speed, it's hard to keep track of all that's changing, but there's one thing that seems to have everyone's attention. A recent research paper titled "The global academic distribution and changes in research hotspots of artificial intelligence in inflammatory bowel disease since 2000" provides a comprehensive overview of the growing role of Artificial Intelligence in IBD care. In this article we will explore the key findings from the paper, its potential benefits for patients, and important challenges and ethical considerations to keep in mind. 

AI in Medical Research

Artificial Intelligence (AI) refers to computer systems capable of simulating human decision-making skills such as, learning from experience, recognizing complex patterns, making predictions, and even refining their accuracy as new data emerges. Unlike traditional software systems, AI can process massive volumes of medical information from sources such as scans, lab tests, electronic health records, and even genetic sequencing. A practical example in IBD care is AI-powered analysis of colonoscopy images. Here, advanced algorithms can help distinguish subtle signs of inflammation or precancerous changes, sometimes even better than the human eye, leading to earlier and more precise diagnosis. These technologies are not only expanding potential research frontiers but are also beginning to find real-world applications in clinical settings.

Brief summary of the research paper

The reviewed paper takes a global perspective, analyzing more than 1,100 published studies on the interplay between AI and IBD from 2000 to 2024. It demonstrates an exponential increase in AI-related research since 2020, driven by technological advances and the push for precision medicine. American institutions, led by leaders such as Harvard University, have made major contributions, with notable engagement from European and Asian centres as well. The paper identifies several hotspots in AI and IBD that have a high impact:

• Radionics: Using AI to interpret medical imaging, especially endoscopy and MRI scans.

• Natural Language Processing (NLP): Leveraging AI to extract valuable insights from clinical notes, electronic health records, and even patient self-reports.

• Predictive Modelling: AI tools that forecast treatment success, likelihood of complications, and need for surgery, all based on a patient's unique profile.

• Genomic and Microbiome Research: Harnessing AI to sift through complex genetic and microbiome data for new biomarkers and therapeutic targets.

• Personalized Medicine: Integrating diverse patient data streams to create custom care strategies for each IBD patient.

Despite these impressive developments, the paper also points out the need for collaboration between doctors, data scientists, and policymakers to ensure safe and effective implementation.

Benefits for Patients

The true power of AI for patients with IBD lies in its ability to deliver personalized and proactive care, with real-world breakthroughs already emerging. For example, AI-driven systems that analyze colonoscopy images and histological samples in real time are already in use. Physicians now can also use AI models that integrate patient's genetic information, environmental factors, and responses to prior treatments, allowing them to recommend therapies with the highest likelihood of success right from the start. One such machine learning study had accurately predicted response to biologics like infliximab and vedolizumab, minimising delays and reducing risk of adverse effects. Other examples include wearable devices powered by AI that can monitor symptoms and biomarkers continuously, alerting patients and care teams to possible flare-ups before they become too severe. In a very recent ground breaking discovery, researchers at UC San Diego used AI to unravel the cause of chronic inflammation in Crohn's disease after 25 years, revealing the critical role of the NOD2 gene's interaction with a gut protein, Paving the way for new treatments that could directly target the root causes of IBD.

Major clinical trials are now recruiting more diverse patient groups, streamlining data collection, and thus providing tailored interventions thanks to AI algorithms that group participants based on truly representative characteristics. These advances mean patients are no longer just passive recipients of generic care, instead AI allows for better treatment plans that adapt as their condition changes, delivering a future where uncertainty and trial-and-error are replaced by precision, speed, and hope.

Challenges and Ethical Concerns

As with any transformative technology, AI's use in IBD is not without challenges. Large volumes of high-quality, diverse medical data are needed to train reliable AI systems. This reliance raises complex issues regarding data privacy, security, and ownership, patients must be confident that their sensitive health information is protected and not used improperly. Ethical concerns also emerge related to transparency and fairness, patients and clinician need to trust that the algorithms are accurate and unbiased, and able to explain their reasoning in clear and understandable terms. Additionally, there's a critical need for clinicians and engineers to collaborate, ensuring the tools are clinically valid, user-friendly, and integrated seamlessly into everyday practice. 

Patients have an important voice in this process. Their engagement can help shape AI systems that uphold dignity, equity, and respect for individuals' needs. Robust ethical oversight and ongoing dialogue will be essential to fully realize the benefits of AI-driven IBD care without unintended consequences.

Conclusion

The integration of AI into the realm of IBD is more than a technological milestone, it represents a profound shift toward truly personalized and proactive patient care. When thoughtfully and ethically implemented, AI can transform how patients experience their diagnosis and treatment by giving them access to faster, more precise answers and by tailoring therapies to fit their unique profile. It can reduce uncertainty, limit experimentation with medications, and empower patients with timely information to manage their health confidently.

For those like us living with IBD, this means not only improved clinical outcomes, but also a higher quality of life, less anxiety, fewer hospital visits, and more meaningful engagement with their healthcare team. With collaboration, transparency, and a patient-first approach, AI has the power to turn hope into progress for those touched by IBD. The ultimate benefit is a healthcare journey that is safer, simpler, and more compassionate with innovation guided by empathy.

Sources:

1. Artificial intelligence in inflammatory bowel disease: Current applications and future directions - https://pmc.ncbi.nlm.nih.gov/articles/PMC12576597/

2. Distinct colitis-associated macrophages drive NOD2-dependent bacterial sensing and gut homeostasis - https://www.jci.org/articles/view/190851

Image from @lucabravo on Unsplash.

IBD and Eating Disorders: Control, Fear, and Survival

by Michelle Garber (California, U.S.A.)

An empty pink-orange plate with a knife and fork on a white background. The plate and utensils have some food remnants left on them, as though they were recently used.

Content Warning: this article discusses eating disorders and topics such as food restriction, binge eating, and body dysmorphia.

For as long as I can remember, food has never been just food. It has been comfort, control, fear, shame, and even the sole measure of my worth. I began struggling with disordered eating as a child, long before I knew anything about Inflammatory Bowel Disease (IBD) or ulcerative colitis—the chronic illness that would later reshape my relationship with my body all over again.

My earliest battle was with anorexia nervosa. I was only around twelve when I began restricting food, counting every calorie, and chasing the illusion of control that came with watching the number on the scale drop. Almost no one knew. The secrecy was part of the sickness—the quiet shame that thrived in silence. It felt safer that way. In a strange way, that shame felt familiar when I was later diagnosed with IBD. Both conditions carried a stigma. Anorexia was whispered about in terms of vanity and control, and conversations about IBD were avoided altogether because they involved the "uncomfortable" topics of bowels, bathrooms, and bodies.

By my senior year of high school, I had relapsed in terms of my anorexia. With prom and graduation approaching, I wanted to "feel confident" in my own skin, but my desire for control quickly turned into obsession again. I convinced myself that going vegan and gluten-free would "clear my acne" and "make me healthier." When it didn't, though, I continued anyway. I continued because I had found something else: the rush of watching the scale drop again. I told myself that it was about health, but deep down, it was about control, perfection, and fear.

When COVID hit, prom and graduation vanished, but my eating disorder didn't. Even though I eventually abandoned the vegan diet, my restriction continued. My hair began falling out in clumps. I was so weak that I needed to be pushed in a wheelchair on family walks and through grocery store aisles. Still, I clung to denial, blaming my fatigue and hair loss on my thyroid. I wasn't ready to admit that I was sick again—not from a medical condition, but from the same mental illness I thought I had conquered.

The human body can only endure starvation for so long before it rebels. Mine did—violently. The pendulum swung from restriction to bingeing. Binge eating disorder involves recurring episodes of eating large amounts of food rapidly, often to the point of physical discomfort, accompanied by feelings of loss of control and guilt afterward.

That was my reality. I gained weight rapidly and felt completely out of control. If anorexia gave me a false sense of control over my life, binge eating disorder stripped it away. I swung from one extreme to another, and both made me miserable. When the weight gain triggered the same familiar self-loathing, I spiraled right back into an anorexia relapse again—a vicious cycle of control and chaos that consumed years of my life.

Eventually, my body began to fail. My heart rate slowed to dangerously low levels. For the first time, I allowed myself to admit the truth: I did not want to die. Recovery, for me, began not with love for my body, but with the simple desire to stay alive.

I began eating again, slowly and carefully. On paper, it looked like recovery—my calories were adequate and my body was functioning. Mentally, though, I was still trapped. I measured every ounce of food, logged every calorie, and spent hours preparing meals to ensure perfect precision. I told myself that it was about maintaining my metabolism, but it was still about fear—the fear of losing control, the fear of gaining weight, and the fear of trusting my body.

Even when I was "eating normally," my life revolved around food. I avoided restaurants unless they posted nutrition information online. I sometimes ordered takeout, only to bring it home and weigh it myself. I had simply traded starvation for obsession. I thought that I had my eating disorder under control, but in truth, it still controlled me. 

Around this time, I began experiencing digestive symptoms: constipation, vomiting, reflux, and pain. I now believe that my disordered eating—the pendulum swing from restriction to bingeing, my extremely high insoluble fiber intake in order to eat high volumes of food with the least amount of calories, and my reliance on laxatives due to my food restriction—played a role in triggering my ulcerative colitis, along with the mental/emotional stress caused by it all.

When I was finally diagnosed with IBD, I thought that my disordered eating would take a back seat. I was wrong. Chronic illness can be fertile ground for eating disorders to grow. The constant focus on diet, the fear of flares, and the unpredictability of symptoms can reawaken old patterns of control and restriction.

In the hospital, I was prescribed prednisone and given a list of "safe foods." Back home, I stuck to that list religiously. Underneath it all, though, my old compulsions still resurfaced. I limited not just insoluble fiber, spicy foods, dairy, and alcohol—which are common triggers during flares—but also carbs, sugars, and sodium. This was due to the fear of prednisone-induced weight gain—the water retention, "water weight," or "moon face" that prednisone could cause. I told others that it was about inflammation, but in truth, I was relapsing again—this time under the socially acceptable cover of a "medical diet."

This is one of the hardest truths about eating disorders and IBD: the overlap between medical management and disordered eating behaviors is often blurred. The two can feed each other in quiet, dangerous ways.

IBD can create new patterns of disordered thinking in people who have never struggled with eating disorders before. This is because when your body betrays you like it does with IBD, food becomes (or at least feels like) one of the few things that you actually can control. Plus, when your weight fluctuates rapidly—sometimes losing as much as thirty pounds in a week and then regaining it soon after—it can completely destabilize your sense of self. 

For those with body dysmorphia or a history of disordered eating/anorexia, this is especially dangerous. There's no such thing as "small enough" in the mind of someone with an eating disorder. Seeing a "low" number on the scale (even when it's caused by illness) can increase your dopamine and ignite the urge to chase that number, again and again. I remember logically understanding that my low weight during my flare was unhealthy, but emotionally, I still felt anger and panic when the scale went up after treatment. Prednisone's mood swings certainly didn't help with this either—I was at war with both my mind and body.

Now, in remission from IBD, I can finally say that I am also in recovery from my eating disorders. Even so, recovery (like remission) is never as simple as it sounds.

Even in remission, disordered eating behaviors can quietly persist. For many of us with IBD, it shows up as hypervigilance around food: the fear of new foods, the obsession with "safe" meals, or the guilt after eating something "off-plan." It can look like avoiding social events involving food, fixating on weight fluctuations caused by steroids, or tying self-worth to whether symptoms worsen after a meal. These behaviors can masquerade as "caution," but they're often echoes of deeper fear—the fear of pain, the fear of loss of control, and the fear of being sick again.

The parallels between IBD and eating disorders are striking. Both involve an uneasy relationship with the body—a sense that your own physical self has turned against you. Both can make you feel powerless, trapped, ashamed, and isolated. Both can lead to cycles of control and surrender, as well as perfectionism and self-punishment. And both are often invisible to others, hidden behind a mask of composure and "doing fine."

Today, my relationship with food is no longer about control—or at least, I'm trying to keep it that way. I eat intuitively when I can, forgive myself when I can't, and I remind myself that nourishment is not a punishment or reward; it's an act of care. My body has been through battles most people can't see—battles maybe I never even noticed. My body deserves gentleness, not control or being told that it isn't "good enough." Yes, my body may have not been the kindest to me over the years, but I also haven't been the kindest to it in return. While my body may have betrayed me in some ways due to my IBD, it has also gotten me through my IBD, my eating disorders, and so much more. My body is not my enemy. My IBD is not my enemy. My weight is not my enemy. How I look in the mirror one day versus how I look in the mirror the next is not my enemy.

Living with both IBD and a history of eating disorders means constantly walking the line between vigilance and obsession, as well as between self-protection and self-harm. Even so, I've learned that healing is not about never struggling again—it's about recognizing when the struggle starts to whisper and, this time, choosing to listen with compassion instead of control.

For more information on disordered eating & IBD, check out this patient-created resource by the ImproveCareNow Patient Advisory Council.

Image from @jogaway on Unsplash.

My Complicated Relationship with Food

by Kaitlyn Niznik (New York, U.S.A.)

Artwork by Kaitlyn, titled “Taste the Rainbow.” The background is bright teal with an out-of-focus rainbow. Overlaid are drawings of brightly colored fruits and vegetables, including an avocado, grapes, a peach slice, pomegranate seeds, blackberries, asparagus, corn, strawberry, banana slice, blueberries, broccoli, carrot, raspberries, yellow bell pepper, peas, beans, and thinly sliced cabbage.

When I first showed symptoms of something wrong, I blamed food poisoning or bad college campus food.  I stuck with these excuses as I left undergrad and started grad school.  Granted, my grad school food was horrible during my first residency - I will never look at squash lasagna the same way again.  However, when I came home and got even sicker, I knew I needed to get checked out.  Since then, I've seen four gastroenterologists and a nutritionist - each one with their own advice regarding food.  Some of the advice I was given include: become a vegetarian, eat low FODMAP, low fiber, low roughage, low gluten, stick to soups/stews, just eat homemade food, switch over to the brat diet on bad days.  I'm someone who was never consistent enough to try a true elimination diet and all the diet restrictions became overwhelming.  With my long hours at work, I didn't have a ton of free time or energy to meal prep everything and I got discouraged when my homemade food still made my symptoms flare up.  After four years of trial and error, here are three things that are helping me develop a healthier relationship with food:

Hydrogen Breath Tests

Breath Tests are non-invasive tests that gave me insight into my food intolerances.  They're more specific than just banning all FODMAPs and if you know what to avoid, it's easier to figure out portions and safe amounts.  I found out I have a fructose intolerance, so I eat fruits and vegetables in moderation and avoid high fructose corn syrup.  

Artwork by Kaitlyn, depicting a hydrogen breath test. A purple bag with a nozzle to blow into sits beside a cup filled halfway with liquid. The background is bright teal.

Biodiversity in Bites

I try to graze on fruits and vegetables whenever I pass by the kitchen.  With my fructose intolerance, I can't eat a lot of fruits in one sitting, so I try to spread out little amounts throughout the day.  Even if it's a frozen quarter of a peach, half a banana, or a few steamed baby carrots, every little bit helps promote biodiversity in the gut.  Before, I was so focused on meeting the daily recommended portions of fruits and vegetables that I became disheartened whenever I failed to reach that goal.  Nowadays, I aim for a bite of a few different fruits and vegetables at meals and throughout the day.  To make it happen, I steam or bake vegetables and then put them in the freezer in bags so they're easy to break up.  I can easily take a handful of black beans and corn for a quesadilla or parsnips, celery, and carrots for a soup.  I am happy to say this is my first fall making stewed apples and it's now become a staple to meal prep each week!  Stewed apples are easier on my stomach and are packed with soluble fiber.  I have also combined them with cranberries to make cranberry apple sauce that's rich in vitamin C.  I'm happy I can find ways to enjoy the flavors of fall without the stomachaches.  

Artwork by Kaitlyn, titled “Taste the Rainbow.” The background is bright teal with an out-of-focus rainbow. Overlaid are drawings of brightly colored fruits and vegetables, including an avocado, grapes, a peach slice, pomegranate seeds, blackberries, asparagus, corn, strawberry, banana slice, blueberries, broccoli, carrot, raspberries, yellow bell pepper, peas, beans, and thinly sliced cabbage.

“Human kibble" 

Thank you to tiktok user @myfoodisme2 because this is my new favorite meal prep obsession.  Before, I felt so limited eating only soups and some weeks it felt like too much work to create balanced and delicious meals.  Human kibble is essentially a basic formula for a quick bowl with a lot of diversity.  It’s like a Buddha bowl, but less artfully arranged and more thrown together.  This is the formula I’m using for meal prep:

Base (Rice/couscous/quinoa)  +  Protein (Chicken, tofu, beef)   +  Veg (A little of everything) 

For me, a spoonful of beans is safe, as is a bite of cooked broccoli, corn, carrots, etc.  I think of it as a nutrient-dense mix that has streamlined my meal prep.  Each component can be prepped separately and then combined in the fridge.  Unlike portioning giant stir-fries where I have no idea how much of each ingredient I'm getting in a single bowl, I can combine the ingredients right in my lunch containers so I know exactly what I'm eating each day.  It's much easier to see patterns or know what gave you a stomach ache when you're keeping things consistent and just tweaking a basic formula each day.  

Artwork by Kaitlyn, depicting a dark teal bowl with a variety of ingredients, such as tofu, broccoli, peas, beans, carrots, and grains. The background is bright teal.

Artwork by Kaitlyn Niznik!

Lessons from My Gut

by Beamlak Alebel (Addis Ababa, Ethiopia)

In the background is a muted sunset. On the right side of the photo, a person uses their hands to make a “frame” around the setting sun.

Yes, I am unique —

my gut became my greatest teacher.

It whispered truths through pain and peace,

showing me the strength in stillness,

the courage in listening,

and the power in being mindful of my body and mind.

I learned to honor,

to protect my quiet spaces,

to find balance between struggle and strength,

between ambition and acceptance,

between the heart’s desires and the body’s needs.

Through pain, I discovered patience.

Through discomfort, I discovered resilience.

Through every challenge, I discovered myself.

Awareness became my guiding light —

a lens through which I saw not just my struggles,

but my strengths, my possibilities, my growth.

It taught me not to blame,

not to expect perfection,

but to understand, accept, and nature.

Now, I walk as an all-rounded soul,

shaped by scars,

strengthened by storms,

yet softened by compassion.

I have learned that life’s lessons are never small;

each one shapes us, molds us,

and pushes us to rise higher than we imagined.

In the CCYAN community, I have found reflection.

Here, voices rise together,

hearts open together,

stories weave together into one shared hope.

We are not alone in our journeys —

our struggles are witnessed, our victories celebrated,

our voices lifted to inspire one another.

My gut has taught me more than pain;

it has taught me presence,

purpose,

patience,

and peace.

It has taught me that even in moments of uncertainty,

even when life feels heavy,

we can remain mindful, balanced, and whole.

And through it all, I continue to grow —

an all-rounded human,

aware, strong, compassionate, and ever-learning.

Photo Credit to: Shutterstock 

To See What Cannot Be Seen: Living with Chronic Pain and IBD

by Michelle Garber (California, U.S.A.)

A blue and black striped background, with the word “PAIN” spelled out in medications.

When most people hear the word "remission," they imagine relief, a clean slate, and the end of suffering. For those of us living with Inflammatory Bowel Disease (IBD), remission is supposed to mean that we can finally be free of the pain that controlled our lives and simply breathe again. Unfortunately, for so many IBD patients, remission doesn't mean that the pain disappears. Rather, our pain changes form. Our pain becomes quieter, more private, and more invisible. It becomes the kind of pain that can exist in silence. The kind of pain that may not scream for help, yet it still whimpers day and night. The kind of pain that is easy to be overlooked while the rest of the world assumes you're fine.

Chronic pain is one of the most misunderstood aspects of IBD. It lingers long after flares fade, threading through your days in ways that are impossible to explain. It's invisible, yet constant. It's being in pain every single day, but learning to function anyway because you have no other choice. Chronic pain has become a part of my life—like a ringing in my ears that I've had to learn to ignore. I've learned to appear "fine" because visible pain tends to make others uncomfortable, and because I've discovered that admitting the truth often leads to dismissal. I have become so adept at masking my pain that I've become fluent in pretending. Pretending that I'm not silently calculating how much longer I can keep standing before the pain in my abdomen forces me to sit down. Pretending that the subtle grimace that escaped when I moved the wrong way was just a product of my "resting b*tch face." And pretending that "pain" is no longer in my vocabulary.

The pain of IBD patients also commonly goes unrecognized by medical professionals because the traditional 1-10 pain scale was not built for those living with chronic pain. For example, if I tell a doctor that my pain is at a "6/10," they may interpret that as "moderate discomfort." For those without IBD or chronic pain, though, my "6" might be their "10." Our baseline is simply so different from those without chronic illness/chronic pain, therefore making the standard 1-10 pain scale almost meaningless for us. This can have dangerous consequences as pain is typically the body's signal that something is wrong. When we are constantly experiencing pain, it can be difficult to determine whether it's "significant enough" to seek help or whether it's just our "new baseline." The fact of the matter is that any pain should be and is "significant enough," but we've been conditioned to not view it as such. We've been conditioned to accept a new and distorted "baseline level of pain" due to our illness, when those without chronic pain are not encouraged to do the same. Therefore, it can be hard for both us and medical professionals to know when something is "wrong," creating the potential for treatment delays, disease progression, prolonged suffering, and—depending on the illness—even fatal consequences. 

Living with chronic pain often means learning to downplay your pain. No matter how much pain I'm in, I never rate my pain as a "10." I rarely even rate it as an "8" or a "9" because I know what happens when I do. I've seen "the look." It's that flicker of suspicion that crosses a medical provider's face when you say you're in severe pain, but you don't exactly "look" like it. I have felt the shift in tone when my honesty is mistaken for medication-seeking or when my tears are assumed to be those of ‘crocodiles.’ Because as it has been made quite clear by many medical professionals, if you don't have overwhelmingly visible evidence of your pain, then it must be exaggerated. Or, you must have a mental illness since "it's just anxiety," and "it's all in your head." So, like many others, I minimize my pain. I say that it's a "4" or "5." I'll tell doctors that my pain is manageable, even when it's often very much not.

The stigma of simply wanting relief is one of the cruelest aspects of IBD and chronic pain. The truth is, it's terrifying to need help in a system that might not believe you. IBD also presents unique challenges when it comes to pain management. Nonsteroidal anti-inflammatory drugs (NSAIDs) are usually off-limits because they can actually trigger flares. Opioids, while sometimes the only medications strong enough to even touch the pain, are approached with understandable caution due to their risks (i.e. the potential for constipation, dependency, and/or substance use disorder). As a result, we're often left to "cope." We're told to meditate, breathe, use heating pads so often that we burn ourselves, and/or use methods of distraction while our insides feel as though they're literally being twisted inside-out. If we're lucky, we might just get a pamphlet or a link to a video explaining these coping mechanisms. We're essentially almost abandoned by most medical providers as they expect us to endure significant pain without the use of effective pain relief options. 

Don't get me wrong, these coping skills can help, but they certainly don't erase our pain. They just make it more bearable. Over time, the constant strain of pushing through the pain can wear down even the strongest person—the person who has "been through it all" and has a "high pain tolerance." Chronic pain doesn't just live in the body. Chronic pain infiltrates the mind and can chip away at one's patience, hope, and even will to keep fighting. 

Yet, I understand why providers are cautious when it comes to pain management because I've seen the other side of it too. I currently work at a substance use disorder treatment center as a soon-to-be therapist. I've noticed that many clients' struggles with substances began in the same place: pain. Some struggled with physical pain, some with emotional pain, and many with both. Some clients even suffered from chronic illness(es)/injuries, were told that there was nothing that could be done for their pain, and were never provided with any sort of pain relief by their doctors. Others were prescribed opioids for a while and were then abruptly cut off from them by their medical providers. Much of their substance use history echoes the desperation that many IBD patients have also experienced—the desperation to simply function. The desperation to hold down a job and just get through the day. The desperation to be able to sleep through constant throbbing and aching. The desperation to escape one's pain for "just five minutes." The desperation to just be. 

These stories serve as a reminder that pain affects so much more than what meets the eye. That's why it hurts so deeply when our pain is minimized by doctors, friends, family members, partners, and even by ourselves. We tell ourselves that our pain isn't as bad as it feels, while we're quietly counting the minutes until we can lie down. We tell others that we're "fine" because we don't want to be seen as "fragile" or "dramatic." We tell doctors lower numbers on the pain scale so that they'll take us seriously. Many of us would rather suffer quietly than risk being labeled. We learn to mask pain so well that even those closest to us never usually realize the strength it takes for us to just get out of bed.

Masking pain comes at a cost, though. Each time we minimize our pain, we invalidate our own experience. We erase a little bit of our own truth, piece by piece—a small but painful act of self-betrayal that we've been conditioned to commit in order to be believed. Masking pain also isolates us. It makes our struggle invisible, and in doing so, it allows others—including medical professionals—to not be able to see the undeniable pattern of IBD patients with chronic pain.

Pain is not just a symptom. It's a lived experience that profoundly shapes our relationships, our work, our self-worth, our future, and our sense of identity. For example, we might pursue occupations that don't require physical labor, and we might choose living environments that are close to our caregivers/doctors, have bathtubs over showers, and lack staircases. For those of us living with a chronic illness, pain becomes part of who we are—not because we want it to, but because it demands to be acknowledged. 

Living with chronic pain and IBD means existing somewhere in a space between endurance and exhaustion. Between being believed and being dismissed. It means learning to hold compassion for yourself, even when the world doesn't. It means carrying an invisible burden that requires extraordinary strength to bear, even though it feels as though you have no strength left to do so. It means showing up—for others, for yourself, and for life itself—often without anyone realizing just how much effort it all takes. 

That quiet persistence is something that I have come to admire deeply, both in myself and in others who live this reality. Because even when our pain is invisible, our resilience is not. It serves as a powerful testament to every person who keeps going despite their own body making the simplest things feel impossible. And even though our pain may be a part of who we are, our resiliency proves that it is certainly not all of who we are. We are so much more than our pain and our illness.

Still, our pain deserves to be acknowledged. Our stories deserve to be believed. Our healthcare system must learn to see what cannot be seen—not to just treat the illness, but to honor the full human experience of actually living with it.

Therefore, we need a better way to talk about chronic pain, especially in regards to IBD. We need providers to understand that our "normal" is not their "normal." That just because we appear to be "fine" does not mean that we are not suffering. That pain in remission is real. And that asking for pain relief isn't manipulation—it's survival. 

Living with chronic pain and IBD means learning to navigate a world that often doubts what it can't see. But we exist, and our pain is valid. It's time for the system and the world to finally see us because if you look hard enough, you'll see that our pain is actually not as invisible as it seems—it just continues to go unseen. 

Image by @gnikomedi on Unsplash.

Reflections on Curating the “Familial Patterns” Art Show

by Kaitlyn Niznik (New York, U.S.A.)

If you haven't already, you can watch a video tour of Kaitlyn’s “Familial Patterns: Generations of Patients” art show here! 

Acknowledgements: My warmest thanks to Shelly Philips - my co-conspirator for the show, to Deborah Reid and Tracy Hayes who run Gallery RAG, CCYAN alum Selan Lee for helping me find my message, and to all the CCYAN members and chronically ill creatives who submitted work! This was my first time curating a show and I'm so thankful I had that opportunity!

Since the start of my CCYAN fellowship, I wanted to make an art show highlighting people's shared experiences with chronic illness.  In July, I went to Gloucester with a goal and a promised gallery space – while I couldn't fully visualize the show until everything was up on the walls, and imagined so many variations of the themes, ultimately focusing the show on family connections to chronic illness made it much more personal.  

Shelly and I spent the duration of the show gallery-sitting and having conversations with visitors about the show's theme. As we reflect back on our time at Gallery RAG, Shelly and I have some final thoughts we'd like to share: 

The stigma associated with Crohn's, colitis, and other chronic conditions is something rarely seen, let alone talked about openly. Gallery RAG, which stands for Radical Acts of Generosity, was the perfect place for us to launch this exhibition and confront people's preconceived notions of illness. The show was just a drop in the bucket to spread awareness and promote acceptance. It allowed people to come together from isolated communities - even crossing oceans to create connections. One visitor reflected on her husband's chronic illness and his struggle to find motivation to get out of the house. She thought a creative outlet might help him feel seen and accepted. Others also shared stories with us, about different loved ones struggling with their health. Sometimes just showing up is half the battle, making a safe space to create, breaking the cycle of isolation, and talking about taboo topics that are usually swept under the rug. It felt good to normalize our medical issues and talk about them casually with visitors. We hope the gallery guests and livestream viewers were able to connect with the amazing variety of pieces in the show. 

Looking into the future, Shelly wants to explore how to reverse the curse of chronic illness by lessening its impact on future generations. She hopes to look into how that in itself could break family cycles of trauma. Shelly wants her future work to shed light on the mothers who never knew that they had undiagnosed autoimmune or inflammatory disease. She plans on investigating how history repeats patterns in the things handed down - after mothers have already passed down the cellular dysfunction - and exploring what immune modulation, environmental changes, and the microbiomes change such patterns. During our conversation, Shelly also talked about Alexis Gomez’s poem about seeing her mom in a different light and how much that touched her. We hope to collaborate more in the future to share the patients’ perspective and focus on how art/writing can be a healing tool.  

We loved how the poems and art in the exhibition worked together. Seeing all the different submissions from poetry, collage, zines, prints, paintings really showed there are so many expressive outlets to utilize. It felt larger than us and we are so grateful we had the opportunity to share your stories. We enjoyed the challenge of making the show accessible for everyone - whether international or on the other side of the country and we can't wait to see what our next chapters bring!

If you haven't already, you can watch the video tour of Kaitlyn’s “Familial Patterns: Generations of Patients” art show here. Below, you can also see some of the pieces submitted by CCYAN fellows and other community members! 

Beamlak Alebel’s (CCYAN Fellow, Ethiopia) poem, “A Heart That Heals,” thanked all the doctors, nurses, surgeons, family, and friends for helping her on her journey to healing. Her heartfelt gratitude shined through to readers who shared their appreciation for their own support systems.  

Aiswarya Asok’s (CCYAN Fellow, India) poem, “Mosaics.” tackled the grief and emotions attached to carrying her mother’s hidden pain. Aiswarya’s piece offered a glimmer of hope, in that through our endurance and shared suffering, we might find more answers and a better prognosis to bring about change. 

Alexis Gomez’s (CCYAN Fellow, USA) poem, “Letter to Mom,” also reflected on her relationship with her mother and how similar yet different their medical journeys are from one another. Her writing felt like a sincere attempt to grapple with mixed emotions, her mother’s guilt, and their shared perseverance in the face of IBD.  

Multiple works from artist Andreana Rosnik, including: “Recipes for a Flare,” a collage communicating the danger and inflammation that comfort foods might cost us internally, which took me back to my own fights with food. “Portrait of the Artist as a Colon,” a zine (a small art booklet) illustrating her challenges living with Ulcerative Colitis. As an artist who also draws colons, I appreciated Andreana’s refreshing take on a digestive system fraught with issues. Her “colon wyrm” and “biblically-accurate intestines” deserve a spotlight as well, and could easily be made into merch and tshirts for other folks with colon issues.     

Nancy Hart’s acrylic painting, “COW,” (top right) depicted a pink cow silhouette on a black and white backdrop to represent one of her many inherited allergies. Marnie Blair’s print, “Snakes and Rivers,” (center) echoed ideas of transformation and survival on the surface of a blue disposable medical drape. The layers of meaning and the subtle ties to both the body and environment appealed to us as we were curating the show.   

See the rest of the featured artwork from Kaitlyn and other CCYAN community members in the video tour!

The Hidden Struggle: Medication Access and Equality for IBD Patients

by Beamlak Alebel (Addis Ababa, Ethiopia)

In the foreground is a graphic of a worried-looking young girl with medium-dark skin, braids, and an orange shirt. Behind her are transparent graphics of an intestine, medications, and other people feeling sick (one holds their stomach, another holds their head). The whole graphic has a dark orange filter.

Treatment is more than a diagnosis or a prescription — it’s about whether the medicine you need is available, affordable, and within reach. For many IBD patients, that uncertainty becomes a heavy burden. It’s hard to stay strong when your survival depends on something you might not find or afford tomorrow.

For me, the struggle is deeply personal. Every month, when it’s time to get my medication, I feel both guilt and sadness. I can’t ignore the heavy burden it places on my family. Watching my parents worry about how to afford my treatment hurts more than the illness itself, especially since the medicine is rarely available in public hospitals. Even though they never complain and always care for my feelings, I can see the stress in their eyes — the quiet fear of what might happen if one day the medicine becomes too expensive or unavailable. It’s painful to live knowing that your survival is also your family’s financial struggle. I wish the medicine could at least be less expensive and easily accessible everywhere, so no one would have to choose between health and hardship.

The world has powerful medicines with great potency — but what is the use of their strength if only a few can afford them? True progress in healthcare means making effective treatments available and affordable for everyone, not just for those who can pay the high price.

Access to medication is not a privilege; it is a lifeline. Yet in many places, that lifeline is fragile. I have seen patients lose hope — not because their illness defeated them, but because the system failed them. Seeing people treated as if their lives are less valuable simply because they are sick is one of the deepest pains a person can feel. It makes you question your worth. It makes you feel invisible.

But we are not invisible. We are fighters, dreamers, and survivors. Our illnesses may have changed our bodies, but they have not taken away our strength or our right to be seen, respected, and included.

Equality should not only exist in words or promises. It must exist in action — in how policies are written, in how medications are distributed, and in how people with chronic illnesses and disabilities are treated. I know how it feels to be looked at differently, to be judged for something beyond your control. What we have is an illness, not a choice.

Even in schools and health-related fields, there are times when lecturers or professionals do not fully understand what it means to live with a chronic condition. They see our physical state but not the strength it takes to show up, to keep learning, and to keep fighting. Being judged for taking sick leave or missing class because of health reasons can make a person lose hope. For now, we keep silent — but one day, we may speak as a volcano when the time comes. Because silence does not mean weakness; it means patience, and patience has power.

I dream of a world where no one loses hope because of a lack of medicine or misunderstanding — where being different is not a reason for exclusion, and where compassion leads policy and practice. Modern research is advancing, but true progress will come when every patient, everywhere, is valued equally — when access to care and empathy become rights, not struggles.

Advocacy is how we get there. By speaking up, sharing our stories, and reminding the world that every life matters, we turn our pain into purpose. Because in the end, access to medication and equality are not just medical or social issues — they are matters of dignity, compassion, and humanity.

Everything will change one day — the policies, the systems, and the hearts of people. Until then, we keep raising our voices, believing that our struggles today can open doors for those who come after us.

Fatigue and IBD

by Aiswarya Asokan (South India)

An image of a person in bed. They are under the blankets, and have covered most of their face with a pillow. Their arm lays on top of the blanket, holding a pair of glasses.

Check out Aiswarya’s presentation slides on fatigue & IBD! She shares about the prevalence of fatigue, types of fatigue, risk factors, the impact fatigue can have on IBD patients, and some suggestions for managing fatigue.

Life with Crohn’s: A Visible Person with an Invisible Disability

by Rifa Tusnia Mona (Dhaka, Bangladesh)

Image of a vast, white sky and ground covered in small brown pebbles. A person with a backpack stands far away, staring off in the distance.

It’s already been a month since I moved to Lisbon. As an Asian girl setting foot in Europe for the first time, almost everything feels new — the culture, the streets, even the rhythm of everyday life. My university is about an hour away from my dormitory, and each morning I take the Carris — the public bus. It’s often crowded, especially during rush hour. On days when I’m carrying groceries, standing becomes a real struggle.

At the front of the Carris, there are four seats reserved for the elderly, pregnant women, parents with children, and people with disabilities. Every time I see those signs, I ask myself quietly: 

Where do I fit in?

Am I “normal”?

Am I someone with a disability?

For a blind person or someone in a wheelchair, the condition is visible — their challenges are seen and, therefore, more understood. But for someone like me, living with Crohn’s disease, the weakness is invisible. Even carrying my laptop sometimes feels like lifting a boulder. On bad days, groceries are out of the question.

A few times, I’ve taken one of those reserved seats just to rest for a moment — and on more than one occasion, an older passenger scolded me in Portuguese. I didn’t have the words, or the energy, to explain.

To make things easier, I sometimes order my groceries online. But when the delivery person arrives and I ask them to carry the bags up the stairs, I often get that same puzzled, slightly judgmental look — as if I’m just being lazy.

The truth is, many people still don’t know what Crohn’s disease is. And when you’re in a new country with a language barrier, explaining your condition to every stranger sometimes isn’t possible.

One day, I was sharing this with a senior from my university. She listened and then said something that stuck with me:

“From the outside, you just look a bit tired and thin. A lot of people are like that. How would anyone know what you’re going through?”

And she was right. There’s no visible “signature” for people with invisible illnesses like IBD. No sign that quietly says, I’m struggling, even if you can’t see it.

That “signature” matters — not just for access to certain rights or support, but also for empathy. When people can recognize what you’re dealing with, even without words, life becomes just a little more humane.

I’ve been thinking: instead of only pushing for general awareness, maybe it’s time for a more practical step — some kind of universal identifier for invisible disabilities. It could be a color band, a card, a small badge — something that lets others know that, while we may look fine, we’re fighting battles they can’t see.

Because when life is already heavy with these hidden challenges, constantly having to explain yourself shouldn’t be another weight to carry.

Thank you for reading. See you next month.

Featured photo by Kyle Miller from Pexels.

Preparing for an International Trip: Chronic Illness Edition

by Lexi Hanson (Missouri, U.S.A.)

A graphic from Lexi, entitled “Everything I Did to Prepare for my Trip to Southeast Asia (Chronically Ill Edition).” In the background is the sky with a blue to orange gradient, the sun is in the bottom right corner. A photo of Lexi (a young black woman with short curly hair, round glasses, a white tank top, and light jeans) is in the middle of the page. Around her are photos related to her tips for travel, including a glass of water, a pill container, and a bunch of grapes. Text is included below.

Everything I Did to Prepare for my Trip to Southeast Asia (Chronically Ill Edition):

• I made sure I had a plan for hydrating and receiving my water intake. Tap water in the parts of Asia I was traveling was not safe to drink. I also needed a liquid to take my medications daily. 7-11 and other nearby stores had many options and I made sure to always have a bottle with me.

• I requested vacation override with my health insurance company to ensure I had enough medications for my trip (and then some). If you’re taking medications, I’m sure you understand the daily/weekly/monthly struggle with pharmacies and/or insurance companies to fill your prescriptions, so make sure to get a head start on this one!

• I educated myself on street food safety and what I needed to do to stay healthy, while also experiencing the culture! I did not accept any fruits that were unpeeled or could be washed with tap/unclean water. I was careful about meat at street food markets, and spoke with my tour guide about how to identify whether food was sitting out for long periods of time and deemed not fresh.

• Tip: Make sure you’re familiar with the vaccines that are necessary and highly suggested in the area(s) you are traveling. Most importantly, check with your doctor about if any of your medications make it unsafe to receive a live vaccine.