Michelle’s IBD “Burn Book”

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

A Mean Girls-style graphic on a bright pink background reads “Burn Book (IBD version).” It has doodles scribbled over the text, including drawings of intestines and the poop emoji.

Inspired by Mean Girls and high school yearbooks, I created an “IBD Burn Book” to shed light on the invisibility of IBD and emphasize the importance of empathy when interacting with someone with IBD.

A yearbook-style photo collage of Michelle smiling and looking happy, with phrases like “don’t worry about me, how are you?” and “class superlative: biggest yes person.” In the background are the repeating words “smiling, outgoing, healthy, strong, energetic, reliable, lucky, blessed, positive, spontaneous, daughter, friend, sister, student, advocate, outspoken, happy.”

When you first open the Burn Book, you’ll see that my “Mask” has been crowned Prom Queen. The images on this page are from moments when I had my mask on—when I pretended to be “fine.” The background words reflect how others perceive me more positively when I wear this mask, which is why it was elected Prom Queen.

A yearbook-style photo collage of Michelle looking tired in various medical settings (the hospital, getting infusions) with phrases like “don’t miss out or flake,” “nobody will accept you” and “patient presents with anxiety.” In the background are the repeating words “gross, liar, pity, ew, anxiety, hypocondriac, shame, lazy, your fault, too young, judgement, skinny, fat, weak.”

The next page is a Student Feature of my Inner Thoughts. Here, I am without my mask. This contrast serves as a reminder that appearances can be deceiving—what you see on the outside isn’t always real; it might just be a mask.

Michelle’s ‘not hot’ list has a pink background with white squares. The following phrases are X’ed out in red pen: “I don’t want to touch you,” “so you’ve got bad genes?,” “i could never live like that,” “you’re too young to be sick,” “at least it’s not cancer,” “you look like a holocaust survivor,” “i have IBS too!,” “have you tried yoga?,” “gross,” “It’s all the junk food you’re eating,” “look on the bright side, you lose weight easily,'“ and “i guess this means we’ll have to adopt.”

Following that is a Not Hot List, which consists of a collection of phrases people should never say to someone with IBD. (Sadly, every one of these remarks has been said to me).

A pink poster labeled “wanted: empathy.” In each square, there is a different phrase: “I believe you,” “I’m here for you,” “I love you,” “you’re beautiful,” “how can I help?,'“ “how did your procedure go?,” “how do you feel?,” “I want to learn,” “can I come with?,” “call me any time,” “you’re always invited,” “what are your dietary restrictions?,” “your struggle is my struggle,” “it has bathroom access,” “I researched IBD,” and “good luck with your infusion!.” The phrases are emphasized with stars, hearts, and stickers that read “100%!” “yes!” and “A+.”

The final page of the Burn Book is a WANTED poster—for empathy. Instead of harmful comments, this page lists empathetic phrases one should say to someone with IBD. Essentially, it serves as the “Hot List” in Mean Girls or high school terminology.

———

Invisible illnesses come with their own set of challenges—such as a widespread lack of awareness—but the focus here is how easily someone with IBD can hide their struggles. Smiling through the pain, pretending to feel well—it becomes second nature. I’m not the first person to wear a “mask” to feel accepted or to make others comfortable, and I certainly won’t be the last.

The reality, though, is that IBD is a constant battle. Even if you see me dancing with friends, traveling, or enjoying a big meal, I am still struggling. The takeaway? You never truly know what someone else is going through, so always choose kindness. More importantly, choose empathy. If you do know what someone is going through (specifically IBD in this case), be especially mindful of your words and actions. While you might assume your words and actions don’t affect us, remember—we’ve had a lot of practice hiding our pain.

From Here to There

by Alexis Gomez (California, U.S.A.)

A white circle spray-painted on the sidewalk, reads “you are here.” A pair of pointy black shoes stands in the circle.

I am here

but sometimes I want to be at the point

where my body is still like

the photo from 2007 where I am four

laying on the living room carpet

holding my infant brother who’s drooling

and I am smiling and

I am healthy and

I have never known a life unlike this.

I am here.

Not like those

under a setting spring sun

warming their skin

unburned,

unlike

        my insides

                     eyes

                      mouth

                        scalp

                     lungs

                legs

       heart

ego.

I will get there

when I can say thank you

to my body for fighting

(itself)

to keep me alive

everyday.

Timelines are unpredictable.

I know I will get there because

I think of the future

I think about being in it

                                              laughing

                                              singing

                                              dancing

                                              admiring

                                              feeling

                                              appreciating

living.

I am here

for now

but I will get there.

(Photo by Fallon Michael on Unsplash)

IBD and Grief

by Akhil Shridhar (Bengaluru, India)

A cup of coffee, a pen, and a napkin with the 5 stages of grief (denial, anger, bargaining, depression, and acceptance) sit on a blue table.

Each person has a unique story when it comes to their experience of coming to terms and living with IBD. What I realized after speaking to some of the patients who have struggled with the disease for quite a few years is that there is a similar pattern in our response to this life-altering event. The diagnosis, which in itself is a drawn-out process of striking out every other possible disease of the gut to finally settle on one condition, which includes countless blood tests, scans, endoscopies, colonoscopies with biopsies, like any other chronic condition, is just the beginning. When I came across the commonly used description for the stages of grief, I couldn’t help but notice the similarities.

The stages of grief are commonly described using the Kübler-Ross model, which outlines five stages that people often go through when dealing with loss or significant change. These stages are not linear, meaning people may experience them in different orders or revisit certain stages multiple times. The stages are Denial, Anger, Bargaining, Depression and Acceptance. With our diagnosis of a chronic condition, we experience a profound shift in reality that can evoke similar responses: 

Denial

Initially we struggle to accept the diagnosis, believing it to be a mistake or downplaying its seriousness. For most of us who are coming across IBD for the first time, usually without any family history, this sounds familiar. I would perhaps lean towards the latter, as a history of psoriasis, a similarly chronic condition, majorly influenced my decisions, which I would come to regret later.

Anger

As reality sinks in, we often have feelings of unfairness and frustration. This anger is usually targeted at our body, medical professions and, in most cases, our loved ones. I found myself feeling guilty of my circumstances, angry at the doctors for not understanding my concerns and addressing them, which feels ironic, and frustrated with my loved ones for downplaying the symptoms.

Bargaining

We then attempt to negotiate our way out of the situation, trying alternative treatments, lifestyle changes, or even stopping medications altogether. Due to my previous experience with psoriasis and other circumstances, I found myself slowly stopping medications. As expected, when the symptoms started flaring up again, I looked into alternative treatment that had shown good results for my psoriasis, a grave mistake which put me in the severe Crohn's category taking me years to recover from.

Depression

As we finally come to terms with the condition’s long-term implications, a sense of loss and hopelessness follows, leading to sadness, withdrawal, or a loss of motivation. Although with IBD being a disease of the gut, this just adds to the list of causes for depression for many of us.

Acceptance

Over time, we adapt and find ways to manage our condition and integrate it into our lives. We begin to accept the new normal and find strength and purpose in this new journey. Five years into this journey, I find myself here, a veteran I say to myself, with a new resolve to help others navigate theirs.

The emotional and psychological journey of adapting to a life-altering event closely resembles a grief-like path. Chronic conditions not only impact our physical health but also our identities, relationships, and goals, making the process of adjusting and coping essential. It's important to note that these stages are a framework, not a one-size-fits-all process. People grieve in unique ways, and other emotions like guilt, confusion, or relief might also play a role.

This is why advocacy can be an incredibly powerful tool to make a difference in helping individuals by providing awareness and education, building a resource network, or helping in accessing resources. It is also important that we encourage empathy and patience with caregivers, family members and society as a whole to provide the required support during these challenging times. For someone going through the journey, engaging in advocacy themselves can be transformative and empowering. On a larger scale, advocacy is also necessary for shaping policies and systems that lead to improved healthcare policies, workplace accommodations, or social programs.

I encourage everyone to seek help and, whenever possible, help out others, as getting diagnosed with IBD can be a deeply personal experience, but one should not be forced to navigate it alone.

(Image credit: marekuliasz from Getty Images)

Potential IBD Accommodations for Teachers and Students (from a NYS Teacher)

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

This infographic was created from discussions with other teachers in the United States living with IBD.  Through those conversations, I realized that the workforce can be a scary and precarious place for people living with chronic illness.  As a unionized, tenured teacher in a public school, I acknowledge I am in a privileged position to disclose my IBD.  However, a teacher or student can choose not to divulge their chronic condition for a number of reasons including job instability or the fear of being singled out.  I made half of my graphic focus on discreet ways to manage your IBD within the education system without revealing personal health information.  This half includes having an emergency supply pack, trusted contacts that you can call for assistance, and knowing the location of private bathrooms instead of public stalls. 

The other half of my picture illustrates ways a student with an IBD can pursue written accommodations to protect them at school.  These include obtaining an Individualized Education Program (IEP) or 504 Plan after their doctor writes a note confirming their diagnosis and its impact on the student's daily life.  In the student's records, they would be classified under the "Other Health Impairment" category and this form would be reviewed and adapted annually.  Parents, teachers, and district personnel would work together to create an IEP or 504 plan that supports the student's needs, helps them manage their illness, and works to reduce the student’s stress in an educational environment.  Teachers with an IBD can also present a doctor’s note to their district to receive reasonable workplace accommodations. 

Sky also belongs to the birds without wings

By Aiswarya Asokan (South India)

A group of birds flies over the ocean. A pastel blue, pink, and yellow dawn is in the background.

A couple of decades ago, when schools were shut for summer vacations, all the cousins returned to Grandpa’s house to spend the vacation. It was bedtime, and all the children secured their place in the bed, waiting for Grandpa to narrate a story before falling asleep. It goes: 

“Once upon a time, there lived birds without wings, which deprived them of the joy of flying freely in the sky and experiencing the vast beauty of sky and land. Therefore, it spends all its time in the land, trying hard to find its food and merely surviving.

This made the birds extremely sad, and it was believed God had cursed them. Time passed, and it became even more difficult to thrive, then God called them and ordered them to carry the weights of some more objects. Birds pleaded to the god to take these weights away from them, but he disagreed. At last, there was no other way other than to carry this burden.

But to the bird’s surprise, it started floating in the air; the weights that dragged it down were now enabling it to fly. What a pleasant surprise: the weights that caused a burden to the birds have transformed into wings. Only then did the birds realize the weight it carried this long has equipped it to fly high and conquer heights.” 

After all the fun and games and a cozy bedtime story, I dozed off to sleep but woke up abruptly with a bit of discomfort inside my tummy; I had to throw up immediately. Everyone had to wake up in the middle of the night and clean the mess; maybe my stomach was upset from something I ate the day before.

Such incidents occurred again and again, maybe vomiting or else diarrhoea, sometimes some uncomfortable feeling inside accompanied by headaches (later on I learned that these feelings can be named nausea, bloating, abdominal cramps, and heartburn…). I hated any kind of physical exertion, whether a dance class, sports, or walking; Physical Education periods were my worst nightmare. Getting into menarche doubled down the sufferings. I was always clumsy with things and had a lot of pain carrying stacks of notebooks from one classroom to another, carrying my school bag, and climbing stairs to reach the classroom. I used to pant like I had participated in a marathon after making it to the classroom each day. It even demanded a good deal of energy just to complete a proper head and body wash. I used to collapse into the bed after a proper shower. But how to gain some energy back? Okay, let us concentrate on food, but however you try to stuff yourself with food, it just bounces back, putting yourself in much more trouble. And visits to the doctor turned out to be a normal stunt just to repeat the cycle once again. Innumerable nights spent tossing to and fro in bed, squeezing the pillow, with frequent visits to the washroom in between, wondering when I could breathe in peace with a perplexed mind not knowing what’s going wrong. This is usually followed by a week where you have to live with an empty stomach if you need to forget the pain.

It is frustrating to navigate a life that is like walking over eggshells. Even the so-called happy normal days come with a lifespan of a firefly. It's so unpredictable, and all your efforts to mend it can go in vain. This leaves you with a heavy mind full of rage and despair. On the flip side, this journey gives you the resilience, endurance, and wisdom that no exams or university education can ever give you. Once you harness this energy, then the sky is your limit. It teaches you to be humble, empathetic, and to live in the moment. But still sometimes I feel deep inside Mother Teresa was right when she said, “The hunger for love is much more difficult to remove than the hunger for bread.”

Image from Unsplash.

Winds of Perseverance: The Crohn’s Chronicles

by Rifa Tusnia Mona (Dhaka, Bangladesh)

Four years ago, I first heard the term IBD. Before that, I had spent years trapped in a cycle of unexplained symptoms and misdiagnoses. Then, one doctor finally said it—a possibility that changed everything. That moment marked the beginning of a long, lone, challenging journey—one that has shaped me in ways I never expected.

Living with Crohn’s disease hasn’t been easy, especially in a society where few understand it. My family had never heard of it. Neighbors mistook it for a simple gastric issue. Friends casually referred to it as an ulcer. Over time, I found myself explaining my condition again and again, trying to make sense of it for both myself and others.

It was during this confusing time that I found comfort in unexpected places.

Chad, Pete Davidson, and the Art of Indifference

I’ve always loved watching Saturday Night Live, especially the Weekend Update and parody commercials. But after my diagnosis, I found myself particularly drawn to one character—Chad, played by Pete Davidson. Chad never reacts to anything with more than a casual “Okay” or “Cool”. His simplicity and indifference fascinated me. Most importantly, it sort of aided me whenever I got tired while explaining my condition or responding to stigmas. Watching Chad made me realize that not every question deserves a long, exhausting answer—sometimes, a simple response was enough. Realistically, it saved my valuable energy.

Then, I discovered something else—Pete Davidson himself has Crohn’s disease. Watching him use comedy to talk about his struggles, even the painful ones, gave me a new perspective. He didn’t let his illness define him. Instead, he turned it into a story—one he could laugh about. That idea stayed with me.

MrBeast, A Semicolon, and a Shift in Perspective

My symptoms flared up in 2019, just as I was stepping into my role as an environmentalist, organizing startup competitions, and representing my university at environmental fests. Suddenly, everything I had been building felt uncertain. It was as if life had placed a semicolon in my path—not a full stop, but a pause, forcing me to adjust. Throughout the rest of my university moments, I was on the verge of dropping out several times.

That’s when I came across MrBeast’s story. I learned, he, too, has Crohn’s. In one of his videos, he shared how he learned to manage his illness by changing his mindset—choosing to focus on what he could do instead of what he couldn’t. That struck a chord with me. I realized that, like him, I could try turning my struggle into a strength. 

Whenever pain came, I tried shifting my focus. Instead of asking, Why me?, I reminded myself that others might be facing even greater hardships like terminal illnesses. At least I am not dying—that was something to be grateful for. To save myself from stress-induced abdominal cramps, the idea acted like armor.

A Win That Came with Questions

This year, for the first time in five years, I received genuinely good news: I was awarded a scholarship to study my dream subject for my master’s. Out of thousands of applicants worldwide, only 100 women were chosen. I was overjoyed.

But when I shared the news, many people responded with an unexpected question: "Don’t they ask for a medical clearance?"

It made me wonder—how many others have felt the weight of these doubts? How many have been made to feel like their dreams should be measured against their diagnosis?

This article is for them.

To those fighting this invisible battle, I want you to know that your struggles do not define your capabilities. The world may doubt you, but that can be freeing. If you succeed, great. If you don’t, they never expected you to anyway. Either way, you win.

As someone fighting such stigmas in everyday life, I know how vital IBD advocacy is! So, a heartfelt thank you to CCYAN for giving me this space to share my journey—and to you, my dear reader, for walking this path with me. Keep going—You’re stronger than you think.

Linked videos:

Chad Horror Movie - SNL © Copyrighted by Saturday Night Live

https://youtu.be/fF6gExZu-2M?si=iW30vRB3rx-B41mG

What is Crohn's Disease????? © Copyrighted by MrBeast

https://youtu.be/pzlPJmNyepA?si=DlMUgnyYB4Gwxh8S

Featured photo by Life Of Pix from Pexels.

Disability & IBD: A summary and thoughts on “Measuring Disability in IBD: The IBD Disability Index”

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

A brown wall with a white spray-painted ‘disabled’ symbol.

In his article “Measuring Disability in IBD: The IBD Disability Index,” Colombel discusses how IBD is viewed in literature and society. He mentions that IBD has received limited attention due to two main reasons. First, IBD has been considered less disabling compared to other chronic diseases, like multiple sclerosis, leading to underestimation of its impact. Second, there has been confusion in the literature about the true definition of "disability" in relation to IBD, with many definitions that do not align with the World Health Organization's (WHO) standard. 

Disability, according to the WHO, refers to the objective problems patients face across various health domains, which is distinct from subjective quality of life. Challenges specific to IBD, such as access to toilets and dietary restrictions, affect disability, and Colombel argues, should still be measured using the same WHO definition applied to all diseases. 

To address this gap, the IBD disability index was developed through a comprehensive process, including a systematic literature review, patient interviews, an expert survey, and a cross-sectional study across multiple continents. The final index incorporates a range of factors such as sleep, energy, body image, pain, and environmental influences (e.g., access to healthcare). It aims to provide a standardized measure of disability in IBD patients. 

The IBD disability index is currently being validated and is expected to help in clinical trials and research. Some questions in the index include sleep, body image, and pain. Once validated, Colombel believes it could influence patient care by raising awareness about disability in IBD and guiding healthcare interventions. It could also help identify predictors of disability and support the development of strategies to prevent disease progression and long-term disability. 

In clinical practice, while the index may not be used daily, it could inform clinicians to ask patients about issues that affect their disability, improving patient care and satisfaction. Measuring disability in IBD will ultimately lead to better understanding and management of the disease, enhancing both clinical outcomes and quality of life for patients.

My thoughts:

This is so fascinating to me, as someone with IBD. The comparison of how disabled someone is based on how impacted they are by their circumstances – and if they can make it through the cut-throat application process to be considered “truly” disabled by the government – seems to lead to isolation of people with chronic conditions like IBD.

When we’re quick to make comparisons or “rank” disability, we alienate others who may not experience disability exactly as we do, but who still may understand our lifestyle or lived experience more so than able-bodied individuals.

I also think there's a unique aspect of being in "remission" with IBD that others don’t always understand, which makes it complex. Sometimes, my IBD impacts me more than it might seem to others, but because the effects aren’t always visible, it’s a concept that can be difficult for people to fully understand.

Having an "index" to show how IBD affects people's lives could really help shine a light on the struggles many face. It could be a way to put into words the challenges that aren’t always visible, making it easier for others to understand just how much this condition impacts daily life – especially in contexts like healthcare appointments, where patients sometimes feel their experiences are not being heard or validated by providers.

Encouraging healthcare providers to use a client-centered, holistic approach when listening to us can lead to a healthier relationship with the healthcare field, and additions like training and feedback surveys could also help in this aspect. In the meantime, we can start by sharing our IBD experiences (through blogs, videos, campaigns, or social media), to help others understand the real-life impacts of IBD, in hope that spreading awareness and knowledge provides some insight into what we go through!

Citation: Colombel JF. Measuring Disability in IBD: The IBD Disability Index. Gastroenterol Hepatol (NY). 2013 May; 9(5): 300-2. https://pmc.ncbi.nlm.nih.gov/articles/PMC3740806/

(Image from Unsplash)

Battling an invisible illness while everyone else plays “doctor”

by Bamlak Alebel (Addis Ababa, Ethiopia)

A person with medium tone skin and chin-length black hair stands behind a clear bubble. Their hands are pressed against the glass, as if they want to get out.

Exams are already stressful, but for those of us dealing with invisible illnesses, they can feel like an impossible battle. The pressure to perform, sleepless nights, and depression don't just affect our mind - they also affect our whole body too: and while we struggle through the pain, others think they have all the "expert" answers:

My Brother wonders, "maybe it is some unknown disease science hasn't discovered yet."

My Parents think, "it must be setan (evil spirit), we should take her to holy water."

Society assumes, "it's probably caused by her poor lifestyle or malnutrition."

Meanwhile, I am just trying to survive this exam while everyone else plays doctor.

The silent struggle of invisible illness

Living with IBD means battling symptoms that others can't see. It is a constant storm - worsening digestive system, gut motility issues, poor sleep, and one of the biggest triggers, stress. 

Exam deadlines and academic pressure can make symptoms flare up. But instead of understanding the real impact of stress on chronic illness, people jump to conclusions. They blame supernatural forces, poor diet, or anything except the real medical condition.

Why awareness really matters 

The truth is, many people don't understand invisible illness until they (or someone close to them) are directly affected. This lack of awareness leads to stigma, misdiagnosis, and people suffering in silence. We need more conversations about IBD not just in medical communities, but also in everyday life.

Invisible illnesses like IBD can be incredibly tough. Friends and family should understand that IBD is a serious, life-threatening condition, and many factors outside our control can trigger painful flare-ups. Other people's misconceptions about IBD just add to our stress as patients...so if stress is a known trigger, we need to address these misunderstandings! 

This is why it is important to raise awareness, have discussions, and help others recognize the impact that IBD has on us. 

Because we know invisible illnesses exist, so why do we keep doubting those who live with them?

Instead of playing doctor, maybe it is time we start listening.

(Image from iStock, credit: nadia_bormotova)

Get to Know the 2025 Fellows: Akhil Shridhar (Bengaluru, India)

What inspired you to apply for the CCYAN Fellowship? 

The CCYAN fellowship is an exciting opportunity to connect with people going through similar experiences spread all across the world. I wanted to share the unique circumstances that we all face battling the disease, while also learning from others about how they deal with various issues brought up by it. Going through the content by past fellows and others suffering from IBD inspired me to do the same to help people looking for resources online.

What’s something you wish more people understood about living with IBD? 

I hope people realize that there is more than meets the eye! The disease is usually described as an invisible disability, and it requires significant effort to manage your day-to-day activities. Anyone suffering from IBD knows that it is pretty unpredictable and has an impact, both physical and mental, on us and the people close to us. It is important that we as patients, and also the people around us, acknowledge this to find a new “normal”.

What’s one piece of advice you would give to someone newly diagnosed with IBD?

One key piece of advice that I would like to share is to take the time and get informed about the disease. It will help you greatly in understanding what you’re going through and might also help ease off some of your apprehensions. It can also be helpful in communicating your symptoms to your medical team and getting you the right and effective care. And more importantly, learn to understand and trust the signals that your body gives you. You have to be your best friend first and foremost.

How has your experience with IBD shaped you (personally, professionally, or both!)?

It has been a story with greater lows than highs, but the lows do teach you a lot more than the highs. I have learned to adapt to the situation and make certain changes, such as, seeking help, asserting myself, making decisions independently, etc. Although we find ourselves constrained by factors beyond our control, we have to find ways to overcome them, and it can be deeply gratifying when you achieve your goals despite the hardships you’ve faced along the way. 

What perspectives, topics, stories, or projects are you looking forward to sharing with the CCYAN community this year? 

I am looking forward to sharing some of my stories and learning about how different each of our experiences can be. One area that I would like to concentrate on is how health policy can ease the burden of new patients and help them manage and overcome the disease better. We need greater awareness about the disease and the support that it requires from all stakeholders here in India, and it is high time we address this issue.

What’s your favorite hobby or fun activity? 

My idea of fun is DIY! Building things from scratch or fixing things has always been something that I enjoyed doing.

What is your favorite book, movie, or tv series, and why?

My current favorite book is “Steve Jobs” by Walter Isaacson. The book takes you on a surreal life experience and has great timeless lessons. Having watched “Interstellar” in the theaters recently on its 10-year anniversary has again made it one of my favorite movies for its brilliant cinematography, epic soundtrack and wonderful storytelling.

What is your favorite way to relax or unwind? 

My favorite way to relax would be to do nothing or more practically, make some coffee, and read a book.

What’s your favorite song, band, or musical artist?

My favorite song is “Waiting For The End” by Linkin Park, which is also my favorite band.

Get to Know the 2025 Fellows: Rifa Tusnia Mona (Dhaka, Bangladesh)

What’s something you wish more people understood about living with IBD?

IBD is a rare chronic illness, but from a disability perspective, it remains invisible. As a result, the pain and struggles of an IBD patient often go unnoticed by those around them—family, friends, and colleagues alike. I wish people would show more empathy toward those with IBD, recognizing that while it is a part of their life, it does not define them. They have dreams, just like anyone else, and they deserve every opportunity to pursue them. A little more understanding and support from friends and colleagues – whether in education or the workplace  – can make the journey toward those dreams much easier.

How has your experience with IBD shaped you (personally, professionally, or both!)?

IBD has profoundly shaped both my personal and professional life. On a personal level, it has taught me to be more discerning in relationships, to say ‘No’ when necessary, and to focus on what truly matters. It has shown me the importance of pausing when needed and moving forward when ready. Most importantly, it has helped me accept the things beyond my control.

Professionally, IBD has given me a sense of maturity. In the past, I would chase every opportunity that came my way. However, after my diagnosis, I learned to value my energy and prioritize what truly aligns with my passions and long-term goals.

What is your favorite book, movie, or tv series, and why?

My favorite book is The Alchemist by Paulo Coelho because it has taught me one of life's most valuable lessons. A line from the book says, "Every search begins with beginner’s luck, and every search ends with the victor being severely tested." I find this quote incredibly practical and motivating in my own life.

What is your favorite way to relax or unwind?

There's a food blogger named ‘Mark Weins.’ He is based in Thailand and is very famous on YouTube. For some reason, I find his videos very relaxing and soothing. Another way for me to relax or unwind is through music. I love both singing and listening to music. Although I am not a professional, It feels like when I sing, all the bubbling emotions inside me comes out and my heart feels light.

Get to Know the 2025 Fellows: Lexi Hanson (Missouri, U.S.A.)

What’s something you wish more people understood about living with IBD? 

I wish people understood how many modifications and adaptations we need to get through the day sometimes. IBD can be a very energy-consuming, exhausting disease and we are resilient for making it through the day, however that might look! IBD has also taught me how much I can manage and deal with while also being a human. Productivity can look very different to everyone, but we’re all humans! 

As someone with IBD, what’s one thing someone (a friend, family member, partner, teacher, doctor, etc.) has said or done that made you feel supported or understood?

Outside of my immediate family, I have a very close friend who has always been a great listener and is familiar with the disease. She allows me to show up however I can and understands if I need to cancel a hangout. Having someone like her makes me feel so heard and that I don’t have to mask or be “brave." I hope anyone living with IBD has/can find someone who they can be honest with and show up as themselves with! 

What’s your favorite hobby or fun activity? 

Right now, I am in a musical through my school. This year we are putting in 9-5. We rehearse during the week and I have been really enjoying going out of my comfort zone. I am no singer or dancer, but have loved the community and being able to connect with other medical students in a creative, outside-of-the-classroom way! 

What is your favorite book, movie, or tv series, and why?

I absolutely love Only Murders in the Building! It’s such a fun series and I feel like I can laugh and be entertained. I also love the guest stars they bring on! 

Get to Know the 2025 Fellows: Alexis Gomez (California, U.S.A.)

What’s something you wish more people understood about living with IBD?

The IBD experience isn’t a monolith! While many people with IBD experience similar symptoms, additional comorbidities and complications that are often associated with IBD can look different for everyone. Remission can even be different depending on the individual. Also, while IBD can be difficult on the body physically, the effect it can have on one’s mental health is often the most challenging. People with IBD are constantly having to adapt, cope with their diagnosis, expect the unexpected, and still show up for themselves and their communities every day.

What’s one piece of advice you would give to someone newly diagnosed with IBD?

Look online for IBD spaces and communities that you resonate with. Don’t be afraid to reach out to people who are also going through similar things as you! It can be intimidating at first, but having a community that gets it can make a huge difference in feeling less isolated and alone.

How has your experience with IBD shaped you?

I think my experience with IBD has made me a more empathetic person. IBD is an invisible disease/disability, and living with a condition that people can’t see when they look at me made me even more aware of the fact that you never truly know what somebody might be going through. Also, my experience with IBD has made me more appreciative of the little things in life that bring me joy and peace.

What’s your favorite hobby or fun activity?

I LOVE going to see my favorite artists in concert! Another fun activity that I enjoy and appreciate is having movie nights with my brother.

What is your favorite way to relax or unwind?

Making a nice hot cup of tea and reading a good book… or watching Netflix. Either or, but always with tea!

If you could have any superpower, what would it be?

I would want the power to heal. It’d be really amazing to be able to alleviate people’s pain from any physical or mental ailments.

Get to Know the 2025 Fellows: Michelle Garber (California, U.S.A.)

What’s something you wish more people understood about living with IBD? 

I wish more people understood that living with IBD is like managing a full-time job. It requires constant attention—from attending medical appointments and taking daily medications to carefully managing fatigue, stress, mental health, and diet to prevent flare-ups. When in an active flare, managing the pain and various debilitating symptoms associated with IBD takes up almost all of our energy. The condition’s unpredictability and constant need for management often forces us to cancel plans or limit activities, not because we want to, but because our bodies demand rest. We are NOT lazy. Whether we’re in an active flare or not, IBD is a persistent presence in our lives, affecting us in ways both visible and invisible.

What’s one piece of advice you would give to someone newly diagnosed with IBD?

My biggest advice for someone newly diagnosed with IBD is to find community. This disease can feel incredibly isolating, as few people truly understand its challenges unless they’ve experienced it firsthand. Connecting with others who have IBD creates a sense of belonging and makes the weight of the diagnosis easier to bear. Having a support system that truly gets it is invaluable—lean on those connections, and let them help you navigate this journey.

As someone with IBD, what’s one thing someone (a friend, family member, partner, teacher, doctor, etc.) has said or done that made you feel supported or understood? 

One of the most meaningful gestures of support I’ve received is when someone accompanies me to my doctor’s appointments. Many people with IBD struggle with medical trauma or fear that their symptoms won’t be taken seriously by healthcare providers. Having a trusted friend or family member by my side—whether for a routine check-up, a four-hour infusion, or even an ER visit—helps ease that anxiety. Not only does it provide comfort, but it also ensures that I have an advocate in the room when I’m not being heard. Plus, when loved ones witness the realities of IBD firsthand, they develop a deeper understanding of what I go through, which makes me feel even more supported and understood. 

What’s one way (big or small) you’ve advocated for yourself as an IBD patient that you’re proud of? 

An act of self-advocacy that I’m particularly proud of as an IBD patient is asserting to my doctors that I am the expert on my own body; I know myself and my body better than anyone else. Medical literature may define typical symptoms of a flare-up, but personal experience doesn’t always fit neatly into those definitions. I’ve learned to trust my instincts—if I notice early warning signs of a flare that aren’t medically recognized, I push for tests and treatments based on what I know about my own patterns. Challenging the notion that "textbook cases" define every patient has helped me receive better care, and I’m proud to have stood up for myself in that way.

What’s your favorite hobby or fun activity?

My favorite fun activities include going to stand-up comedy shows and going to concerts/live music events. There’s nothing better than experiencing the energy of a great performance in person! 

What is your favorite way to relax or unwind?

My go-to way to unwind is listening to music and getting lost in Spotify rabbit holes—it’s the perfect way to discover new artists and sounds while calming the mind. 

What’s your favorite song, band, or musical artist? 

Some of my favorite artists and bands are Chase Atlantic, The Neighbourhood, Magdalena Bay, Tame Impala, Mobley, Carpetman, Ashley Sienna, and THEY. 

If you could have any superpower, what would it be? 

If I could have any superpower, I’d choose the ability to heal—it would be incredible to take away pain and suffering, both for myself and for others.

Get to Know the 2025 Fellows: Aiswarya Asokan (South India)

What inspired you to apply for the CCYAN Fellowship?  

I wanted to feel something good/positive come from living with Crohn’s.  

What’s something you wish more people understood about living with IBD?  

Other people feel like I am having an attitude on my face, or as egotistic, or not smiling much, or being too lazy, or too demanding at times, or sleeping in classes at unexpected times. I wish they understood this is because inside I am going through unbearable pain, fatigue, or mental and physical breakdown which is hard to explain to everyone. 

What’s one piece of advice you would give to someone newly diagnosed with IBD? 

It might be very difficult to make peace with yourself and come to an understanding that it is a lifelong journey, but the earlier you can try to find acceptance, the better. Usually everyone has a tendency to hide the diagnosis on the note “how will others take it?,” but it’s our life, and it's only for us it is that we are the center of the show – for others it is just passing news, and not as big a deal as we may think. 

How has your experience with IBD shaped you (personally, professionally, or both!)? 

First of all surviving with IBD is not at all easy, you have to put double or triple efforts  compared to others to reach the same place! But now when I look back, I see:
1) As a doctor, I am more empathetic than others my age. People feel safe with me to share their concerns, and they feel heard and understood when interacting with me.
2) Since there were a lot of extreme lows in life, I know who the genuine people in my life are, and who will stay with me no matter what. Without IBD, I wouldn’t be able to come to this awareness this fast.
3) I was a very ordinary girl, a so-called good girl with a lot of fears inside, blindly following the rules laid down by the society. IBD has forced me to come out of it, break the rules if necessary, and to live my life on my own terms. In that way, IBD has given me a lot of freedom, or taught me what freedom is. 
4) Since IBD puts you through a lot of difficulties, my brain has become wired to get any tasks done in the easiest and simplest manner, so that my healthy friends feel that I am very cool. IBD has improved my patience, resilience, and perseverance.  

What’s one way (big or small) you’ve advocated for yourself as an IBD patient that  you’re proud of? 
I got diagnosed with IBD when I was in my late teens, I was told to keep the diagnosis a  secret by my family. There was a male nurse (who did my first colonoscopy) who told my  father that the diagnosis would turn out to be a serious issue when I get married. After a few years, when I had a lot of flares, I decided to stop keeping it a secret. This decision brought more ease to my life and my parent’s life – it was more like getting liberated. 

As someone with IBD, what’s one thing someone (a friend, family member, partner,  teacher, doctor, etc.) has said or done that made you feel supported or understood? 

My boyfriend is a big support – even when I go through weight fluctuations, he has never once made me feel bad. Instead, he has taken me to different places and taught me to enjoy life and not restrict it because of IBD. When we share our plate at  fancy restaurants, he will usually have all the fiber stuff on the plate so I can have the parts without fiber and will get a chance to try every food I want to. 

A former principal in my ayurveda college was the only person at school who knew about my diagnosis back then. He checked on me from time to time, and inquired if I was feeling tired or low. At the same time, the diagnosis was a safe secret with him, the way I wanted it to be. Once when I was going through a flare, he told me to make a list of people of whom I felt hurt and forgive them, so that I feel less burdened from inside. 

What is your favourite book, movie, or tv series, and why? 

I like the TV series “Friends,” it's fun to watch, because it is inclusive to everyone, feels comforting, connecting, and simple. 

What is your favourite way to relax or unwind? 
Watch a movie, spend time with friends or some family members, go for walks in the early mornings or in the moonlight, eat good food, and go on trips. I also love to stay cosy in my bed. 

What’s your favourite song, band, or musical artist? 

A.R. Rahman 

Do you collect anything? If so, what and why? 

I collect quotes/lines from books that I find interesting, it gives me some strength. 

If you could have any superpower, what would it be? 

Sometimes I wish I could eat whatever I want without having to go through any pain. A few days before my surgery (I used to vomit even when I take water), I asked the surgeon if I would be able to eat a biriyani right after surgery!

Get to Know the 2025 Fellows: Kaitlyn Niznik (New York, U.S.A.)

What’s one piece of advice you would give to someone newly diagnosed with IBD?

To anyone newly diagnosed, please give yourself some grace.  Know that there's going to be hard times ahead and you're going to experience things you never expected to deal with in your life.  It's okay to have bad days. It's okay to ask for help when you need it and be transparent with loved ones about how you're feeling.  Above all, don't forget your online IBD community is here for you!

How has your experience with IBD shaped you (personally, professionally, or both!)?

When I was younger I developed a severe blood/needle phobia.  As a precaution, I was excused from countless science lessons in school.  Since my diagnosis, I've tried to make up for lost time and learn more about the human body.  I read pathology books and IBD research papers in my free time so that I can be a more informed patient. 

What perspectives, topics, stories, or projects are you looking forward to sharing with the CCYAN community this year? 

I'm hoping to bring some art opportunities into my CCYAN Fellowship!  I am very interested in the topics of narrative medicine, biomedical communication, and medical illustration.  One perspective I am excited to share is having an IBD while also battling blood, medical, and needles phobias.  

What is your favorite book, movie, or tv series, and why?

My favorite movie is the Bollywood film Queen (2013) for its messages of independence and finding yourself.  I feel like getting an IBD in my 20s stunted my independence, so I really connect with the main character’s journey.  It also has one of my favorite songs ever - “Kinare”.

What’s your favorite song, band, or musical artist?

My favorite band is Enter the Haggis - a Canadian Celtic rock band with bagpipes and fiddles.  I've been to four of their concerts and own way too many of their t-shirts.  

What is your favorite hobby or fun activity?

I was an Irish step dancer for 11 years through high school and joined a Bollywood dance team for 5 years in college.  This year, I'm hoping to rekindle my love for Indian dancing by starting classical Bharatanatyam.

Get to Know the 2025 Fellows: Bamlak Alebel (Addis Ababa, Ethiopia)

What inspired you to apply for the CCYAN fellowship?

I was inspired to apply for the CCYAN fellowship because it is inspiring to see how people with IBD support each other and live their lives fully despite the challenges. These individuals serve as role models showing that it's possible to thrive with IBD seeing this kind of support can be incredibly empowering to feel less alone.

What is something you wish more people understood about living with IBD?

I wish people understood that living with IBD is a life threatening condition, not caused by malnutrition. Taking medication doesn't mean we are weak or incapable, we can manage our symptoms and still work and study and live lives. Again, sometimes certain foods can trigger our symptoms and while it might seem confusing we choose specific diets, because we understand what's happening behind-the-scenes in our bodies. 

What is one piece of advice you would give to someone newly diagnosed with IBD?

Know that IBD doesn't mean you can't live a full or meaningful life. Embrace it also knowing that you are not alone, embrace the lows with strength and appreciate the highs.

How has your experience with IBD shaped you (personally, professionally, or both)?

My experience with IBD shaped me in many ways. It made me to be empathetic toward others facing invisible illness, it also taught me the importance of self care and faith whenever we face uncertainty. Professionally it has fueled my passion to advocate and be resilient and made me turn my challenges into opportunities to help others.

What perspective, topic, stories, or projects are you looking forward to sharing with  CCYAN community this year?

My goal as a CCYAN advocate is to empower individuals living in IBD by sharing the lessons I learned from my journey. In addition to this, I have a goal to develop an app which is multilingual containing  both Amharic and English to support IBD patients in Ethiopia and globally.

As someone with IBD, what is something someone (a friend, family member, partner, teacher, doctor etc) has said or done that made you feel supported or understood?

One thing that has made me feel supported as someone with IBD was hearing 'you are not alone - you can, we can’ from a Crohns and Colitis Ethiopia member. It gives me hope and reminds me that we are in this together.

What is your favourite hobby or fun activity?

My favourite hobbies are going to church and taking night walks with my brother. Those moments give me peace and faith and time to connect with my family.

What are your favourite books, movies, or TV series and why?

My favourite TV series is Don't mess with an Angel (cuidado con al angel) which is a Mexican telenovela originally in Spanish. I found it interesting because of its emotional story and strong characters. It showed overcoming challenges with love and strength. 

If you could have any superpower what would it be?

If I could have any superpower it would be the ability to cure illness and provide basic needs for every one. I would work to make sure that no one has to suffer from lack of these essentials.

Navigating the "Why Me?" Season of Chronic illness

Yeabsira Taye Gurmu: Addis Ababa, Ethiopia

The "Why Me?" season of my journey with Inflammatory Bowel Disease (IBD) was one of the most challenging times in my life. The onset of symptoms—unrelenting abdominal pain, fatigue, and unpredictable bowel movements—left me feeling lost and overwhelmed. Each doctor's appointment felt like a new hurdle, as I faced uncertainty and often dismissed concerns. The emotional weight of confusion, fear, and frustration was heavy, making it difficult to envision a future where I could manage this condition. It was a time filled with questions but few answers, leaving me grappling with the reality of my health.

For new patients experiencing a similar phase, it’s essential to understand that these feelings are normal and part of the diagnostic journey. Expect to encounter a mix of emotions, from denial to anger, as you seek answers. It’s crucial to advocate for yourself and seek support, whether through online communities or professional help. Keeping track of symptoms and preparing questions for your healthcare provider can empower you during appointments, helping to clarify your condition. Remember, this stage is often a tumultuous path toward understanding, and it’s okay to feel vulnerable as you navigate it.

Transforming the "Why Me?" phase into a positive, lifelong attitude is possible. Embrace the challenges as opportunities for growth and self-discovery. Focus on education about your condition, which can demystify the condition and foster a sense of control. Surround yourself with supportive people who uplift you and understand your journey. By practicing self-care and maintaining a proactive mindset, you can turn this difficult chapter into a foundation for resilience and empowerment. Ultimately, this experience can lead to a fulfilling life with your chronic condition, marked by hope and a renewed sense of purpose.

Featured photo by Disha Sheta from Pexels.

Revolution in Diet Therapy for Inflammatory Bowel Disease: A distilled summary

A Summary of Revolution in diet therapy for inflammatory bowel disease - Melton - 2024 - JGH Open - Wiley Online Library

By Peter Park, 4th year medical student, Plano Texas

Disclaimer: This piece is not intended to serve as medical advice, but as a reflection on strategies for patient advocacy. Always talk to your GI provider before making any changes to your diet, medication regimen, or any other aspects of your health care.

This is a review article that compiles several studies which center around how diet interplays with Crohn's disease and colitis. Articles are subcategorized by well known factors that contribute to inflammation including meat, dairy, additives, and fiber. Articles and studies are also graded on academic rigor with the gold standard being a randomized control trial and lower quality studies being observational data.

Exclusive Enteral Nutrition (EEN)

First, the article talks about EEN. What is EEN? EEN stands for Exclusive Enteral Nutrition, which means nutritional resources come from a liquid formula for 6-8 weeks (gross). EEN has been shown to achieve clinical remission similar to corticosteroids in pediatric populations. Adult populations seem to follow a similar trend.

Compared to steroids, using a EEN liquid formula based diet is way better to remove the potential harmful side effects of steroids. More specific data shows that factors such as male sex, younger age, milder disease, and certain microbiome profiles respond better to EEN. One criticism can be the healthy user bias where study participants are naturally going to be healthier people and that the person who can tolerate EEN for 6-8 weeks may just be a more self-disciplined person with less financial or social barriers, and overall healthier person. 

Partial Enteral Nutrition (PEN)

Let’s be real. Would you sign up for a smoothie-only diet for 6-8 weeks? Authors looked into other diet options such as PEN or Partial Enteral Nutrition where only a portion of food intake is liquid formula and the rest is unrestricted food intake. However, studies have not been promising in PEN’s ability to reduce inflammatory markers such as fecal calprotectin or CRP. Whether that's because of poor ability to stay on that diet or whether that's because of the diet itself is hard to say.

Crohn’s Disease Exclusion Diet (CDED)

Crohn’s Disease Exclusion Diet (CDED) uses 50% PEN and permits only certain foods in three phases: 

• Phase 1 - Chicken breast, fish, lean meats, olive oil, onion, potatoes, rice, tomatoes 

• Phase 2 - certain legumes, fruits (blueberries, kiwis, and peaches), vegetables (broccoli, cauliflower, sweet potato, and zucchini), oats, whole-grain bread and pasta

• Phase 3 - can introduce foods such as alcohol, coffee, dairy, grains, and seafood

• Foods to avoid in ALL phases -  Process meat, artificial sweeteners, seeds, emulsifiers, and preservatives  

CDED has been shown to reduce inflammatory markers but has yet to be validated in a larger scale study.

Find more information about the Crohn’s Disease Exclusion Diet on the Nutrition Therapy for IBD website.

Diets for Ulcerative Colitis

There's exciting new evidence in ulcerative colitis that indicates that high levels of Hydrogen sulfide (H2S) can increase disruption of the microbiome and cause injury to the colon. Fecal transplant has also been shown to be more impressive and impactful in reducing inflammatory markers when paired with a plant based and low protein based diet. The Mediterranean diet has also shown to improve inflammatory markers but it still seems unsure whether the  Mediterranean diet alone is causing this or whether it's the removal of the standard American diet which is known to be high in fats and protein.

I personally want to focus not on any specific diet but the overarching data that seems to indicate that avoiding processed foods, especially processed meats, can help to reduce inflammatory markers. Whether that reduces symptoms from a subjective patient point of view is a little harder to capture in the data. So far, the evidence is clear: There is no evidence that IBD can be treated with diet alone.

Our disease as IBD patients is still a medical disease that requires specific medications and  Hopefully we can continue to see more diet and nutritional studies as we all have personal common-sense-knowledge that diet does impact our flares.

One of the best ways to personalize your own flares is to capture a food journal where you can document certain food triggers that occur with flares. This can be really useful in bringing to your gastroenterologist or other specialist, in order to develop a diet plan that works for you. There’s real hope in using food as part of your treatment plan, and with the right approach, it could help you feel more in control of your IBD.

Featured photo by Dana Tentis from Pexels.

A Few Things I Learned from Advances in Inflammatory Bowel Diseases (AIBD) 2024 As a Patient

A Few Things I Learned from Advances in Inflammatory Bowel Diseases (AIBD) 2024 As a Patient

By Maria Rouse from NC, USA

Disclaimer: This piece is not intended to serve as medical advice, but as a reflection on strategies for patient advocacy. Always talk to your GI provider before making any changes to your diet, medication regimen, or any other aspects of your health care.

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I recently had the amazing opportunity to attend the annual Advances in Inflammatory Bowel Diseases (AIBD) conference in Orlando with CCYAN. Living with ulcerative colitis for 15 years now, I thought that my personal realizations about living with it might be fairly limited moving forward. AIBD helped me realize the power of knowledge and community support in developing new insights about my disease journey and what I hope for my future. Whether this information helps inform your self-advocacy for you or your loved one’s care, or simply is empowering to know as you progress on your IBD journey, I hope that sharing what I learned from AIBD as a patient provides you with another tool in your toolbox for managing the complexities of living with IBD:

#1 Do not assume your voice is automatically less important than your provider’s. The patient-provider relationship should be a partnership. Advocate for your needs the best you can as the best expert on your body.

Do not be afraid to share with your provider if you feel that you are not doing well on a medication they have prescribed you, whether it be because of recurrent symptoms, side effects, or another factor. Your experience matters.

You may have already encountered this reality during your IBD disease journey, but it may be helpful, as it was for me, to hear it concretely said: the way you feel might not always be indicative of your disease activity or whether you are truly in remission. It is possible for you to be feeling well but have your labs and other biological markers show that your disease is active.

This does not mean you shouldn’t trust your own intuition, but that our bodies are complex. As frustrating as this reality is, our providers can help us uncover when things are not going as well as we perceive.

#2 It is important to be aware that IBD can sometimes affect more than your gastrointestinal system.

If you feel that your IBD may be connected to health issues occurring in other parts of your body like your eyes, joints, or skin for example, do not be afraid to share these concerns with your provider even if they do not specifically ask about them. While it can sometimes be difficult to tell if other health issues are related to your IBD, if they are, there may be treatment alternatives that can help address these issues in addition to your IBD.

While everyone’s IBD is different and one person’s experience doesn’t represent everyone’s, I have found it enlightening and often comforting to talk to other people with IBD about less commonly discussed symptoms (e.g., problems with hunger, mobility, and skin issues) I have experienced, to know I am not alone. It has helped me feel more comfortable proactively bringing up such topics with my provider to both ensure my disease is under control and identify ways to potentially alleviate symptoms and improve my daily quality of life. 

#3 Managing your diet and nutrition can sometimes feel like the bane of your existence, but they can be key supportive elements for managing your IBD.

In my opinion, IBD dietary and nutrition advice can feel overwhelming and frustrating, because it’s impossible to identify dietary guidelines that work for everyone with IBD. While diet and nutrition are typically supportive components of an overall treatment approach, they are still important elements for overall health and wellness. 

Do your best to follow guidelines from your provider and nutritionist, if you have one, and listen to your body’s needs. At the same time, however, do not stress too much if you don’t get it just right, or it takes a while. It’s a journey, and sometimes our needs can evolve over time.

#4 If you identify as a woman or as gender non-conforming, the field has a long way to go with prioritizing research and care at the intersection of IBD and reproductive health.

There is a lot of unclear or flat-out misinformation out there, and providers do not always bring up issues such as painful menstruation, fertility concerns, or sexual functioning issues that can be associated with IBD. Do not be afraid to bring up any concerns or questions you have with your provider, whether that be your GI provider or your reproductive health care provider.

There is a lot of emphasis on research and care related to pregnancy and IBD, which, while important, does not represent the whole spectrum of needed reproductive care for people with IBD. 

Some examples of topics that we need to advocate for further attention towards as patients include exploration of potential connections between IBD and endometriosis, management of painful periods, and clearer guidelines on safe and effective contraceptive use.

Fighting, Grieving, and Enduring Entropy

Fighting, Grieving, and Enduring Entropy   

By Zahraa Chorghay, Montréal

Trigger warning: mental health, death

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In a universe of entropy, living with a chronic illness has meant surrendering control and expectations of stability to give myself the gift of being more flexible and adaptable, and thus, more resilient. This transition isn’t an easy process, particularly for someone like me: an elder daughter of the diaspora fed on a steady diet of validation for professional accomplishments. Unlearning harmful ableist notions of success and well-being has been a challenging journey spanning years — and one that is and will be ongoing throughout my lifespan.

Crafting this last official piece of content as a fellow for this Young Adults Network for people with IBD (inflammatory bowel disease), I am moved to reflect on my transitions, particularly over this past year as a CCYAN Fellow. When I applied to the CCYAN fellowship a little over a year ago, I knew what I was looking for: a space to connect with others like me, and a platform to advocate about IBD. My tenure with CCYAN certainly fulfilled both of the needs, and more. I engaged with IBD research, attended meetings in the broader health policy and scientific community, facilitated peer support meetings, and became part of a community I hope to continue with for many more years. But the joy and learning from being in the CCYAN community was just a fraction of life. 

In reality, 2024 was a year of great turmoil. Geopolitically, yes, and also, personally.

The beginning of my year was marked with illness. By February, after an incredibly fun winter chalet weekend with some of my closest friends, I found myself in the emergency room of a hospital. Diagnosis: severe anemia. Solution: a blood transfusion. (You can read more about that here.)

The following week, I was slated to fly to California for an interview, so I did. That went well enough that a couple of months later, I left my stable corporate job and packed my bags for a permanent move across the continent. After my PhD, I had taken a protracted hiatus from my passion, neuroscience, so I was thrilled to be returning as a postdoctoral associate (“postdoc”) in a brand new lab in the Golden state. 

The move was tough. Moving to a new country means starting from scratch. Logistically, I had to get all my documents in order, deal with banks, find housing with no credit history, and navigate an entirely different healthcare system. Socially, I had to make friends and deal with the profound sense of missing everyone back home. (You can read more about that here.) But I was there to advance my career, and I obstinately held on to that goal. I had to learn many new things, and under a completely different management style than I had previously encountered. So I dove into the scientific literature, asked for help from my supervisor and colleagues, and practiced my techniques. Everytime something went wrong, I came back to the lab, working even longer and harder to make sure I could improve. I would stay late often enough that one of my favourite colleagues became the night-shift janitorial staff member. (She would often pass by me and say, “Keep working hard, girl!”)

Despite my resolve, I struggled. I wasn’t ready to give up, but the combination of suboptimal conditions affected me deeply. I’d return to my sparsely-furnished apartment at the end of each day too exhausted to do anything but eat a quick dinner and lie down, while having that sinking feeling that I had nonetheless missed the mark at work. I was living in a beautiful city with perfect weather and the vast ocean in the peak of summer, but I scarcely had the energy or capacity to enjoy it. My appetite, sleep, and energy levels were all affected, and I knew my stress could cascade into a Crohn’s flare before I knew it. I was taking everything I had unlearned about ableism and notions of success, and learned about IBD, work-life balance, and myself over the last decade, and tossing it out the window.

And as a result, I was drowning. The more I struggled to keep swimming, the more salty water I was intaking. The only times I came up for air were when visitors from home flew to California to spend time with me, showing me glimpses of the person I once was and could be.

Then, I received a text from my father. Inna lillahi wa inna ilayhi raji'un (To God we belong and to Him we return) — a prayer for the deceased. Unable to believe the words that followed, I called him immediately. 

Baji Ammi had passed away.

In English, Baji Ammi translates to Sister Mother, and that is perhaps a better description than the vague, distant, and altogether inadequate word, “aunt,” that the language would otherwise designate. Her death was sudden, as she had been an otherwise active woman in her early sixties. Her death was devastating, as she was the kind of person who gave unconditional love to whomever was so fortunate as to be in her orbit. 

Everything blurred together in the hours and days after this news. Grief became giant convection currents rippling through the mantle, forever shifting the tectonic plates of my life: I was forced to face myself. Ultimately, I quit my postdoc and returned home to Canada. Now, I am trying to figure out what comes next, while dealing with logistics and processing grief.

A year ago, I couldn’t have imagined that I would move across the continent only to move back, or that I’d pursue a postdoc only to leave it within a few months, or that I would never see my kind, beautiful, witty Baji Ammi ever again. And despite the overwhelming grief of dreams and of life extinguishing, I have also been incredibly fortunate (aA) to have unwavering love and support to move through this grief. I’m glad I also had CCYAN throughout this tumultuous year, getting and giving support to our incredible community. 

In a universe of entropy, of constant turmoil and loss, I suppose life endures.