The Day I Chose to Fight: Surgery, Strength, and the Power of the Mind

by Beamlak Alebel (Addis Ababa, Ethiopia)

An image of a person standing on rocks, balancing an extremely large boulder. It looks like they are trying to push the boulder up the incline. In the background is a wide open desert landscape.

There are days that change us forever — not because we are not ready, but because life gives us no choice. For me, it was the day I faced surgery.

That moment came with fear, complications, and a sense of losing control over my body and even my appearance. I wasn’t prepared — not mentally, not emotionally. Yet I had to choose: risk everything or let everything fall apart.

Before that day, I never imagined hearing the words: “You may be moved to the ICU.” No one is ready for those words. Your heart races, your mind fills with unfinished dreams, and suddenly life and death sit together in the same breath.

But when that moment came, I made my choice. I chose life. Even with all the unknowns. Even with the pain. Because sometimes the bravest step you’ll ever take is the most uncertain one.

Over time, I learned that strength isn’t about muscles or energy — it’s about mindset. When your body feels defeated,your mind becomes your strongest weapon. Deep inside me, beneath all the fear, I found a hidden strength I never knew I had.

Yes, I cried. Yes, I doubted. But I rose.

Living with IBD has stolen parts of my childhood, but it has also taught me to fight. My strength didn’t appear overnight — it grew through countless painful moments that shaped me into the woman I am today.

And here’s the truth I want others to know: we don’t need approval from anyone to define us. We know our own limits, and we know our own strength. Scars don’t make us less — they prove we survived.

If you’re standing at the edge of fear right now, please remember: you are not alone. The fear is real, but so is your courage. Even when your body is tired, even when others don’t understand — your mind can carry you further than you think.

We are not broken.

We are not our scars.

Photo from @vicky49 on Unsplash.

Mental Health & IBD Series

by the 2025 CCYAN Fellows

A graphic of the earth, with black text reading “IBD and Mental Health: Global Perspectives.”

This month, some of our fellows worked together to share perspectives on mental health and IBD. Check out their articles and videos on this topic below!

Insights from Beamlak (Ethiopia), Aiswarya (India), and Lexi (U.S.A.)

Living with inflammatory bowel disease (IBD) is never just about physical symptoms. It impacts mental health, education, relationships, and self-worth. For many patients, the emotional toll can be as heavy as the physical pain. We came together to explore the connection between IBD and mental health, and each of us shares a different perspective, facts, lived experiences, and personal reflections. Together, they form one message: mental health in IBD care is not optional, it is essential. We wanted to show that IBD is both a physical and mental health journey. Data highlights the need for better systems of care, and personal stories remind us of the resilience and strength it takes to keep moving forward. Together, we call for greater awareness, compassion, and support for every person living with IBD. 

Read their perspectives:

• Facts we Can’t Ignore - Lexi

• Diagnosis is a Light, not a Lampshade - Aiswarya

• “Let it” - My Rule for Living with IBD - Beamlak

  
  
  

Insights from Akhil (India) & Alexis (U.S.A.)

Akhil & Alexis (alongside 2022 CCYAN Fellow Maalvika & CCYAN’s Program Manager Rosa) presented about the intersections of Chronic Illness, Mental Health, and Cultural Considerations at the 2025 Bridging Voices, Building Futures: Youth Innovation in Mental Health Conference (hosted by Generation Mental Health). View the presentation below:

“Silent No More: We are the Story and the Solution”

Check out more of our 2025 fellow’s articles and videos on other mental health topics:

What it’s Like Working Through Phobias - Kaitlyn Niznik

Through (on Stigma, Shame, and Talking about IBD) - Michelle Garber

God of Small Things: A Crohn’s View (on Stigma and Connection) - Rifa Tusnia Mona

IBD & Grief by Akhil Shridhar

Internalized Stigma in IBD, Mental Health, and Quality of Life by Aiswarya Asokan

Mental Health & IBD (An Infographic) by Lexi Hanson

The Facts We Can’t Ignore (Mental Health & IBD Series)

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

A speckled grey granite countertop, with black scrabble tiles spelling out “Mental Health Matters.”

According to the American Gastroenterological Association (AGA), 35–36% of IBD patients report anxiety or depression—far above national averages. Yet, too often, providers prioritize physical health while overlooking mental health needs.  Supporting mental health is not a luxury for IBD patients—it is a necessity. 

What are some supports that can make a difference for Young Adult IBD patients?

• Embedding mental health professionals (psychologists, social workers) in IBD care teams.

• Routine mental health screening for young adults.

• Coping toolkits to build self-advocacy, communication skills, and emotional resilience.

• Extending transition support to age 25, not just 18–20.

• Availability of peer and lived-experience communities for validation and advice.

• Access to reliable information tools about nutrition, travel, accommodations, relationships, fatigue, and brain fog.

• IBD-aware university services: bathroom access, class accommodations, and counseling.

• Policy reforms to ease insurance challenges and improve navigation.

• Education on ADA rights and workplace accommodations.

• Self-compassion training to protect mental health.

Check out Lexi’s July post for more facts about Mental Health & IBD!

Photo from Unsplash.

“Let It” — My Rule for Living with IBD (Mental Health & IBD Series)

by Beamlak Alebel (Addis Ababa, Ethiopia)

Two hands reach towards one another. One is handing a black paper heart to the other outstretched hand.

Living with Inflammatory Bowel Disease (IBD) is a journey no one truly understands unless they’ve walked it themselves. It changes your body, your mindset, your lifestyle — and even your identity. Over the years, I’ve discovered a rule that helps me rise above the noise, pressure, and pain: 

“Let It…”

It reminds me to stop fighting what I can’t change and instead make peace with it — to keep breathing, keep moving, and most of all, keep living.

Let It Be What It Is

IBD is unpredictable. One day you feel okay; the next, you’re back in the hospital.

I remember one exam day when the classroom was overcrowded. I had followed every rule—no phone, fully prepared—but when I arrived, every desk was already taken. There was no seat left for me.

It wasn’t a flare. I had come ready to write the exam, but the conditions made it impossible. I felt angry and frustrated—I had put in the effort, yet I was turned away by circumstances beyond my control. Missing that exam hurt deeply, not only academically but also emotionally. Still, I whispered to myself: “Let it. Everything has a reason.”

Let People Say What They Want

“You don’t look sick.” “Are you sure it’s that serious?” People don’t see what happens behind closed doors — the fatigue, the pain, the hospital visits. Their words used to cut me, but I’ve learned: “I don’t need to prove my pain.”

Let Yourself Say No

There are foods I can’t eat, events I can’t attend, and expectations I can’t meet. I used to feel guilty for saying no, as if I was letting people down. Now I know: “Let yourself say no. It’s not weakness — it’s wisdom.”

Let Hope In

On the hard days, hope is my medicine. Sometimes all I can say to myself is: “Tomorrow is another day.” And that’s enough. Even a tiny spark of hope can carry me through the darkest moments.

Let Go of Pressure

IBD puts pressure on every part of life — physically, emotionally, and socially. I’ve let go of the need to be perfect. If my body tells me to rest, I listen. If I miss something important because of my health, I remind myself: “My health comes first.”

Let Life Be Easier

I no longer compare my life to those who seem to “have it all together.” My peace, joy, and success may look different, and that’s okay: “Let life be gentle, even if it’s not always easy.”

Photo from Unsplash.

Diagnosis is a Light, not a Lamp Shade (Mental Health & IBD Series)

by Aiswarya Asokan (South India)

In front of a grey wall, there is a small green plant in a pot that says "grow grow grow," a table lamp with a white shade and wooden base, and a small moon-shaped nightlight atop a wooden base.

It was on May 2nd 2016, a day before my 19th birthday, for the first time in my life, I heard the word Crohn’s, from my doctor back then. It came as a scientifically valid explanation to all the so-called “sick drama” I was exhibiting through the years. But the excitement of this achievement soon faded away when I came to know that there is no cure for this. Then came the joint family decision, we will keep this diagnosis a secret to ourselves. Anyways, who is going to accept me if they know I have got a disease that makes me run to the toilet and that I have to be on regular medication to stop this from happening. For the next 4 years, I lived like a criminal, fearing for every breath this crime will be caught.  In between, I was ill informed about the dietary restrictions I was supposed to follow, and kept eating triggers from time to time, meanwhile wondering why this is happening – but was still focused on keeping the secret safe.

Still, life was a smooth sail with a few days of bad weather here and there, till 2020, when I had my worst nightmare: a serious flare that left me hospitalized for more than 2 months and unable to take my final year university exams. And my secret was out. Not being able to appear for exams was too much for an academically excellent student like me. I was experiencing such intense pain that I couldn’t even turn sides in bed. All this made me question my identity and shattered my fundamental belief system. None of the medicines were working on me. A group of surgeons visited me, and told me that if surgery was attempted, my life might be over on the table. When I realized I might die soon, I decided to live a little. Even though I was not able to eat anything, I ordered a red velvet cake and ate it. The 2020 Tokyo Olympics were going on – it was my all-time wish to watch the Olympics live, but my academic schedule did not allow me to do so. So from the hospital bed, I watched Neeraj Chopra win a gold medal for India, while all my classmates were taking final year exams.

After a while, steroids started working and I started getting better. At the age of 23, I was 33 kilograms, severely malnourished and on a high dose of medication. I was not afraid to die but coming back to normal life was a challenge. I couldn’t face people nor attend phone calls. Even notifications from messages were alarming for me. I zoned out from everyone around me. I felt myself as a complete failure. 

One person kept on calling me, despite me ignoring all their calls, until one day I finally picked up. He was my childhood bestie, who stood with me till I was able to manage things on my own. He made a timetable for me, which included slots for physical activity, exam preparations, and fun activities, and made sure I followed them on a daily basis. Then the exam date came up. There were times when I took supplementary exams alone, in a hall that usually accommodates 60 students. Everyday after the exam, he would ask me how it went, and suggest a movie to watch as a reward for the hard work. After a while, exam results came, and I had the highest score than previous years. Life was again on.

A journal entry from Saturday August 19th, 2023. Text written in blue ink reads “I can’t recollect a day without pain. I can’t take this anymore. I can’t look at the mirror. I have forgotten how I was before. I don’t know how to get out of this. Where to get help from, who can understand me.”

Whenever a flare up hits me, the first thing I notice is a keen desire for physical touch, especially a warm hug, though it sounds strange. I also clench my jaw while asleep, to an extent that my whole face and ears start to hurt the next morning, which further makes it hard to have food. Within the next 3 years, time was up again for a rollercoaster. I had a stricture, unbearable pain, my oral intake was nil, and I had to go for a hemicolectomy. The anticipated complications for the surgery were extremely frightening. This time my boyfriend came up and assured me that “no matter what, I will be there for you.” The surgery went smoothly and I was discharged. I was physically fit but started experiencing PTSD-like symptoms. I started feeling I was just a financial burden to my family.

I slept all day and night as I was not ready to face the thoughts in my head. My boyfriend used to call me every day – just for those few moments I was living, but the rest of the time I used to sleep.  This time no friends nor family could help me. Then I started searching for IBD support groups, came to know about IBD India, took the free mental health counselling, and joined the peer group. For the first time, I felt less isolated and felt a sense of belonging. And slowly I replaced my coping mechanism of sleeping with painting. Gradually I was healing, and started feeling more freedom like never before. 

Life goes on. Ups and downs are part of it. But when one door closes the other opens. When you feel stuck, ask for help and keep asking until you get one strong enough to pull you out — that is the bravest thing you can do for yourself.

Image from Unsplash.

Mental Health and IBD: An Infographic

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

A light yellow background with pink-orange text reading “mental health and IBD.” There are pink graphics of an intestine and a brain on either side of the text.

A light yellow background with pink-orange text and pink graphics of an intestine and brains. Text included below.

Some connections between Mental Health and IBD (sources included below):

• Some evidence supports a reciprocal relationship between mental health and disease activity. Depression is more consistently linked to outcomes than anxiety.

• Mental health issues are strongly linked to relapse and recurrence. Stress-related cytokine production likely contributes to inflammation. Anxiety and depression affect treatment adherence, leading to worse outcomes.

• Psychiatric comorbidities remain a major driver of poor outcomes and healthcare costs despite advances in treatment.

A light yellow background with pink-orange text and pink graphics of a smiling intestine and brain. Text included below.

Some Daily Habits to Help your Mental Health:

☐ Take medications as prescribed

☐ Eat balanced meals that support your gut health (avoid known triggers)

☐ Drink enough water throughout the day

☐ Practice 5–10 minutes of relaxation (deep breathing, meditation, or gentle stretching)

☐ Check in with yourself emotionally (How am I feeling today?)

☐ Engage in light physical activity if able (walk, yoga, stretching)

☐ Prioritize 7–9 hours of quality sleep

☐ Write down one thing you’re grateful for today

A light yellow background with pink-orange text (included below).

Sources:

Mental Illnesses in Inflammatory Bowel Diseases: mens sana in corpore sano. Bartocci et al. 2023. https://pmc.ncbi.nlm.nih.gov/articles/PMC10145199/

Consensus Statement on Managing Anxiety and Depression in Individuals with Inflammatory Bowel Disease. Hinnant et al. 2025. https://academic.oup.com/ibdjournal/article/31/5/1248/7739104

https://www.crohnscolitisfoundation.org/patientsandcaregivers/mental-health

Learning to Complain: A Survival Skill for Chronic Illness

by Akhil Shridhar (India)

A cream colored background with graphics of doctors and patients having discussions.

For many of us living with IBD, saying “I’m fine” has become a habit, something we were taught to say to avoid worrying others or causing trouble. But managing a chronic condition means we can’t afford silence. Doctors need us to describe what hurts, what’s changed, and what’s not working. At first, that shift feels unnatural. How do you speak up about pain when you’ve spent years trying to hide it? Learning to explain what’s wrong isn’t just about getting better care, it’s about breaking the silence, challenging stigma, and making sure our needs are heard. Speaking up is advocacy, and it starts with learning to complain. Many of us were taught to downplay pain, brushing off discomfort to seem strong. 

This kind of silence runs deep, shaped by family, culture, and a society that equates quiet with resilience. But for people living with IBD, staying silent can be dangerous. It leads to delayed care, isolation, and missed warning signs. Although, learning to speak up about symptoms is just a part of it. Especially in developing countries like India, where systems often lack the integration, communication is not just helpful but essential. For most, the responsibility of managing appointments, tracking medical records, logging test results and prescriptions, consulting different specialists, and coordinating insurance doesn’t fall on an organised platform, it falls on the patient.

A cream colored background with graphics showing the many different effects of IBD. There are a series of graphics showing a cartoon person dealing with urgency, cramping, nausea, fatigue, hiding symptoms, taking medications, struggling to eat, and mental health. These graphics are circling an image the human body, to convey the multi-systemic nature of IBD.

Living with IBD means your body goes through changes that aren’t always easy to explain. Symptoms come and go, and sometimes they’re hard to put into words, especially if you’ve spent years being told not to make a fuss. When you share what you’re feeling clearly and honestly, you’re helping your doctor understand how to support you better. It’s not complaining, it’s communication. And with a little guidance and the right tools, you can learn to speak the language of your symptoms in a way that leads to real care and understanding. 

Doctors rely on clear, consistent information to track how IBD is affecting your body, and that’s where accurate symptom-sharing becomes key. The table below outlines the kinds of details that help build a more accurate picture of your condition.

Living with IBD often means navigating a maze of symptoms, appointments and uncertainty. But the ability to speak clearly and communicate will go a long way in getting the care that we deserve. That’s why this table isn’t just a tool, it can help you bridge the gap between what you feel and what the doctor needs to know. Remember, this guide is meant to serve you, so feel free to adapt it, add to it, and make it your own. Bring it to your appointments, refer to it and use it to shape your care in ways that truly reflect your needs. 

This log table is for you to document your symptoms and experiences in a structured manner. Save a copy and take notes or just use it as a reference for your next appointment!

Some Do’s and Don’ts of Travelling Internationally with IBD

by Rifa Tusnia Mona (Dhaka, Bangladesh)

Last month, I took my very first cross-border trip—from Dhaka, Bangladesh, to Delhi, India. It wasn’t just my first international journey; it was also my first time traveling by air. That alone is exciting enough, but there was something more that made it meaningful: it was my first adventure after being diagnosed with Inflammatory Bowel Disease (IBD).

Traveling is always a mix of excitement and unpredictability. Add a chronic illness to the equation, and every small detail becomes a bit more complicated—navigating airports, managing fatigue, handling meals, and dealing with unexpected flares. But from this experience, I learned some lessons I believe could help others who are walking the same path. So, here are a few do’s and don’ts for fellow warriors out there traveling with IBD:

✔️ Do: Plan Your Journey Thoroughly
When you live with IBD, planning isn’t optional—it’s survival. While no amount of planning can prevent every hiccup (hello, Murphy’s Law), it certainly softens the ride. For instance, simple things like knowing where to buy a local SIM card, or how to book an airport cab ahead of time can make a huge difference in having a smooth start!

✔️ Do: Ask for Help When Needed
This is something I struggle with, especially as an introvert. At the airport on my return flight, I was utterly exhausted and going through a flare-up. A kind airport staff member offered to assist me, but I declined—probably out of habit or hesitation. I regretted that later. When you’re in an unfamiliar place, everyone is technically a stranger anyway. So if help is offered, take it. Even small support—like directions to the washroom or help carrying your bag—can be a huge relief when your energy is limited.

❌ Don’t: Follow Others’ Travel Routines Blindly
Everyone’s body is different. What works for your friend might not work for you—and that’s okay. Several people recommended I take the Delhi Metro to get around. It sounded smart, economical, and even a little adventurous. But for someone already fatigued, changing between the Yellow and Pink lines during rush hour turned into a nightmare. That day ended in a flare-up. Lesson learned: listen to your body first. Your energy is precious—don’t waste it trying to keep up with someone else’s idea of efficiency.

These are just a few of the moments from my first international trip with IBD. Traveling with a chronic illness can be isolating. Often, it’s hard to explain your condition or expect some stranger to truly understand it. But the truth is: you understand it. And that’s enough.

Acceptance and self-awareness are your greatest tools. Don’t let IBD define your boundaries. Opportunities are still out there, and you deserve to chase them. If you make room for compassion—for yourself first—you’ll find that you’ve already conquered half the challenges.

Don't forget to enjoy my short video of the journey (linked below!). Again, I thank you for reading this far. See you next month!

A Heart That Heals

by Beamlak Alebel (Addis Ababa, Ethiopia)

A close-up photo of a bowl full of acorns. The bowl is engraved with the word “thankful,” and there are acorns scattered in front of the bowl.

Through sleepless nights and heavy days,
You lit my path in countless ways.
With faith and strength, you pulled me through,
Restored my soul, made all things new.

To doctors wise, with healing hands,
Who serve with love in every land—
With knowledge deep and hearts so kind,
You brought me peace and strength of mind.

To the surgeon, calm and true,
Whose steady hands saw me through—
With courage firm and vision bright,
You turned my pain to healing light.

To nurses kind with gentle care,
with whispered prayer—
With watchful eyes and steady grace,
You made the hardest moments safe.

To family strong, who stayed so near,
Who held me close through every tear—
Your endless love, so fierce and true,
Was my sky bright when storms blew through.

To friends who stood through every test,
With laughter shared and hearts at rest—
Your joy and comfort every day
Helped chase the fear and dark away.

To support groups, warm and wise,
Who lift each other’s truths and cries—
You showed me I am not alone,
In every scar, our strength has grown.

Through trials, triumph, joy, and pain,
My gratitude will still remain—
To every soul who walked with me,
I thank you all—eternally.

Image from StockSnap.

Advocating for IBD

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

A beige and black graphic titled “Advocating for IBD.” An arrow is in the middle of the page, pointing right. Text included below.

Why is IBD Important to Advocate for?

• IBD (including Crohn’s disease and ulcerative colitis) affects millions worldwide and can severely impair quality of life.

• Often diagnosed in teens and young adults, IBD can affect people during the most critical stages of personal and professional development.

• Because IBD involves bowel symptoms, people often avoid talking about it, leading to shame and isolation.

Lasting impacts from IBD

• High rates of anxiety and depression are associated with IBD due to its unpredictable nature and social limitations.

• IBD leads to significant healthcare costs, lost productivity, and financial strain for individuals. 

• Access to proper diagnosis, treatment, and ongoing care is not equal across regions and populations. 

How can we Advocate?

• Share personal stories and facts through social media, blogs, podcasts, and public events (especially during awareness months).

• Advocate for policies that ensure better healthcare access, insurance coverage, and medical leave protections for those with chronic illnesses. 

• Form or join local or online support groups to connect patients, caregivers, and allies.