NEWS
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 Beamlak 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!