Preparing for an International Trip: Chronic Illness Edition

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

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

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

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

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

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

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

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!

Listening to Your Body with IBD: The Stoplight System

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

A stoplight with red, yellow, and green lights is illuminated on a dark blue night sky.

When you're living with Inflammatory Bowel Disease (IBD), your body becomes its own navigation system. Your body is constantly sending you signals, just like traffic lights do. But unlike the red, yellow, and green lights on the road that we instantly respond to, many of us with IBD have learned to ignore or minimize the "rules" or "drills" that we should follow when our body sends us our own, personal warning signs. 

So why is it that we respect a blinking car dashboard, a low battery warning on our electronic devices, and traffic signals/signs more than the signals coming from our own bodies? We wouldn’t ignore our car’s check engine light for weeks (and if we did, we’d expect it to eventually break down). So why do we ignore our body’s warnings? Why don't we listen? As with most things, the answer is complicated. 

Here are a few reasons why as people living with IBD, we might forget to listen to these warnings, or try to “push past” them:

• Living with IBD means that a few warning lights are always on. That is, we might always have some level of fatigue, bloating, or discomfort. This "always-on" background noise becomes our new normal, and we stop noticing when new signals show up. This is risky because it can lead to ignoring major warning signs or missing slow-building flare-ups.

• Our symptoms can become our new normal or "background noise," so we're used to pushing through pain. This means that even when our bodies give us that "red" or "yellow" light signal to slow down or stop due to a symptom/pain that is out of the ordinary, we are still conditioned to push through it. For a lot of us, that is a survival mechanism of having chronic pain (pain that never fully becomes "background noise") in a medical system and society that often tells us to "push through." The world is constructed for those who are able-bodied, and having chronic pain/IBD can force us to sink or swim.

• We are often taught to minimize our symptoms, for ourselves and others. Sometimes, doctors dismiss our warning signs, maybe because medical literature doesn't acknowledge all the intricate traffic signals for IBD. Maybe, they're just burned out. Or, maybe doctors—and people in general—can't fully understand the severity of IBD symptoms if they haven't gone through it themselves. Whatever the reason, though, we are conditioned to minimize our symptoms. We are taught that our illness "could be worse." In fact, when explaining IBD to others who don't quite listen closely enough, the false notion that IBD is simply "stomach problems" circulates. So much so that we, ourselves, sometimes say this to others or even believe it ourselves. We don't want to be sick. We wish it was just stomach problems. Being told that our personal traffic lights/signals are simply a result of "anxiety" or "are in our heads" make it easy to eventually believe it ourselves because, why would we want to be sick?

• We don’t want to "miss out." Sometimes, we’d rather have a moment of fun—followed by a flare/low-spoons day—than not experience the fun at all. Ignoring the signals can sometimes feel "worth it" since it can give us a small glimpse of what "normal" might be like. We are forever torn between the notions of "respect your body's limits" and "you only live once."

• Finding a way to make a choice, despite the consequences, can feel liberating in the short-term. This can look like eating a food that you know isn't "safe" just because you want to make a CHOICE and have autonomy over your own body. As IBD patients, choice is often not in our vocabulary – so pushing through the pain of IBD is often the only way we can feel slightly in control of our own bodies. This is a sense of freedom that we greatly lack as IBD patients.

• We don't want to be a “burden.” IBD, in itself, is a burden that we already have to carry. Living with it every day is extremely difficult, and that is an understatement. Even so, we still notice how it affects those around us— our caregivers, partners, family members, friends, co-workers, employers, and even doctors. Carrying the burden alone is never the solution, but it sometimes seems like the right one since it feels wrong to allow someone else to feel even remotely similar to us. It doesn't feel right to allow anyone to be down in the trenches with us—at infusion appointments, at ER visits, at ICU admissions, or at "bathroom sleepovers." It doesn't feel right to allow anyone to feel so wrong, even if they want to. Therefore, we ignore the signs, because if we took action that would mean that we'd need help, whether we like it or not. We'd have to reach out to someone, even if that's just a doctor. Simply alerting your doctor that you've failed another biologic can make you feel like a burden since you might feel as though you're giving them more work. Reaching out to loved ones can be even harder as they will often want to be there for you, and you simply don't want to burden anyone anymore.

• We’re afraid of what we’ll find if we stop and really listen. As previously mentioned, we don't want to be sick again. We don't want to discover a new co-morbidity again. We don't want to switch medications again. We don't want to be flaring again. We don't want to go to the hospital again. We don't want to experience medical trauma again. We don't want to put life on pause again. We don't want to miss out again. We don't want to be a burden again. We don't want to lose control again. Listening to your body, and truly paying attention to what it's telling you poses the risk of you having to accept the fact that you might have to go through all of these things again. And at the end of the day, we just want to live—freely. It feels like a constant tug-of-war between surviving and actually living. 

The truth is: Your body will always tell you what it needs. It’s just your job to check in—gently and consistently. 

Since there is no cure for IBD yet, much of this disease has to do with symptom monitoring and, thus, taking as many preventative measures as possible. I, for one, know that I would like to stay in remission and avoid a flare-up for as long as possible. Even so, I know that's only possible if I listen to my body—genuinely listen. Whether that's taking note of unusual fatigue or nausea, a new sensitivity to food, etc., these are acts of listening to your body and its signals.  While we are taught from a young age what traffic lights mean and why it's important to follow them, we aren't taught how to notice and follow the signals that our bodies give us.

A few simple things that you can do to start the practice of ‘checking in’ with yourself and your body: 

• Create your own ‘traffic light:’ write down some of the signs you notice, when you’re feeling ‘green, yellow, or red!’

• Set aside a few minutes each day to ask yourself: What "color" am I today? What makes me that color? What am I feeling, and where am I feeling it? If I’m yellow or red, what needs to change? If I’m green, what can I do to stay there? 

Not sure where to start? Here’s an example of my “traffic lights,” and some of the signals I use to check in with myself and my body!

A light blue background with a boarder of green triangles. The text reads “Green means you’re good to go! It doesn’t mean you’re “cured.” With IBD, there’s no one-size-fits-all version of wellness/remission, but it means your body is operating at a manageable and comfortable baseline. When you’re in green, lean into it! Move your body (if you can), make plans, enjoy safe foods, and take note of what helps you stay in this zone. Celebrate ‘green days’ without guilt. They are precious!” There are bullet points with “green light signs” below, the text reads “No Signs of Infection or Illness, Up-to-date on Medications, Overall Mental Clarity, Overall Emotional Stability, Doctor Cleared for Basic Activities, Feeling Energized/Rested, Eating Well-Tolerated Foods, Regular Bowel Movements, Healthy Consistency of Stool, Medications Working Effectively, No Incontinence, No Urgent Bowel Movements, Stable Lab Work, Hydrated, No Constipation, and Minimal Pain/Bloating.” Scattered throughout the page are graphics of a stoplight, a full gas symbol, a fully charged battery, and a green thumbs up."

A light blue background with yellow and black caution tape boarder. The text reads “Yellow is your caution zone. You’re not necessarily flaring, but your body is whispering (or maybe even raising its voice a little). Yellow can be subtle and easy to dismiss, but it’s the most important time to pay attention. In the yellow zone, it’s time to pause and reassess. This may mean: Canceling plans, taking a rest day, eating safe/bland foods, booking a doctor’s appointment, requesting follow-up lab work, reintroducing self-care routines, and more. Yellow isn’t failure. Yellow is wisdom. You’re responding to your body before things worsen. Think of it as preventative maintenance.” There are bullet points with “yellow light signs” below, the text reads “Borderline Lab Results, Mild Changes in Appetite, Changes in Digestion, Low Mood/Increased Anxiety, Sleep Disturbances, Mouth Ulcers, Chronic Nausea, Slight Fatigue/Brain Fog (Not Explained by Medications), Slightly More Frequent/Urgent Bowel Movements, Mild but Persistent Abdominal Discomfort, Decent Consistency of Stool, Mild Joint Pain/Inflammation, Migraines/Headaches, Changes in Skin (Inflammation, Acne, etc.), Worsening Menstrual or Premenstrual Symptoms, or Chronic Bloating.” There are graphics of a yellow stoplight, a half-full gas symbol, a ‘low battery,’ and warning/slow signs.

A light blue background with red EKG patterned boarder. The text reads “Red means something is wrong. It's time to STOP everything else and prioritize your health immediately. This is where IBD forces you to pay attention, whether you’re ready or not. Red means it’s time to: contact your gastroenterologist, take time off school/work, let someone else step in to care for you, follow strict diet/symptom-management protocols, reevaluate or switch medications, get imaging or scopes done, advocate HARD for yourself if you’re not being heard, and go to the ER or urgent care if needed. Red is scary, but it doesn’t mean failure. It means your body is fighting hard and needs you to listen.” There are bullet points with “red light signs” below, the text reads “Ongoing/Sudden Incontinence or Urgent Bowel Movements, Labwork w/ Significant Abnormalities (i.e. Inflammation or Anemia), Complete Loss of Appetite/Ability to Eat, Sudden/Dramatic Weight Loss, Emotional Overwhelm, Not Responding to Medications, Severe Abdominal Pain, Blood in Stool, Mucus in Stool, Dehydration, Fever, Vomiting, or Extreme Fatigue.” There are graphics of a red stoplight, empty fuel tank, ‘stop’ and ‘warning’ signs, and a red low battery symbol.

A few things to remember/keep in mind: 

• Checking in doesn’t mean obsessing. It simply means being mindful enough to care. Just like we do for our phones, our cars, and our jobs—we deserve to offer ourselves the same level of awareness, support, and maintenance.

• Living with IBD doesn’t mean you’ll always be stuck in red or yellow. Some days are green—some weeks or months, even. You deserve to honor those days as much as you manage the hard ones.

• This stoplight system isn’t about fear. It’s about empowerment. You are not weak for needing rest, medical support, caregiving, or time. You are wise for knowing when to go, when to slow down, and when to stop.

Your body isn’t the enemy—it’s the messenger. Listen to it. Trust it. Respond with love. Your body is doing the best it can to keep you alive. Let’s return the favor.

Image from @tsvetoslav on Unsplash.

What It’s Like Working Through Phobias: Creating A Comfort Toolkit

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

Four drawings of different comfort tactics (described below) on a light purple background.

I can't remember a time when I didn't have a blood/needle/medical phobia.  I would regularly faint at the doctor's office and even talking about blood was enough to make me pass out in high school.  It wasn't a problem until I developed chronic stomach issues and was diagnosed with microscopic colitis.  All of the sudden, I was pushed headfirst into a world of doctors' appointments and countless medical tests.  It's hard enough to find answers from doctors, but fear can make you ignore your problems, making things worse.  I still struggle with this phobia today, but with the help of a therapist, I’m working through my issues.  Please seek the help of a trained professional to face your phobias in the safest way possible.  Here are several strategies I'm using to make progress facing my fears.  

A drawing of a dark purple “Encyclopaedia Anatomica” on a light purple background.

Desensitization Training/ Exposure Therapy

Desensitization and exposure therapy can start with looking at images of videos of your phobia, eventually progressing to more realistic scenarios. For instance, someone with a blood phobia might progress from viewing images to medical shows and eventually going to blood drives.  The overall goal might be to get bloodwork done, but you have to build up exposure over time to get more comfortable with your fears.  

I've been unknowingly trying to do this my whole life.  As a kid, I would reread veterinary books to expose myself to a little literary medical gore.  I would deem it a success if I didn't get woozy.  Today, medical imagery has become an inherent part of my artistic practice.  I find exposure more palatable if I attempt to explore images and procedures from a place of curiosity rather than fear.  If I'm looking at veins, I try to ask myself what colors I see under the skin.  I've progressed to the point where I can look at surgical photos of arteries and attempt to draw them without getting queasy.  It's easier for me to separate myself from a picture than a procedure happening to me, so that's where my exposure therapy has started.  

Working with a therapist, I did a deep dive on my phobias and my hierarchy of fears.  Instead of just seeing all situations surrounding blood or needles as being equally terrifying, I was able to sort them into a list of situations with varying intensity.  While younger me thought a finger prick was the worst situation possible, I now list it much lower on my list, opting to put IVs in a higher position.  It's all a matter of perspective.  By making a fear hierarchy, I was able to tackle lower intensity situations and gain confidence and resilience before braving my top fears. 

A drawing of two different chairs (one upright, and one reclining) on a light purple background. The upright chair has a red circle and line through it, indicating “no,” while the reclining chair has a yellow circle and check mark, indicating “yes.”

Keeping A Sense Of Control 

When I was little, my family had to trick me to get me in the doctor's office.  In adulthood, I tried to mimic this strategy by being spontaneous. Instead of scheduling a flu shot and worrying about it for weeks in advance, I'd wake up and decide to go that morning.  This strategy somewhat lessened my stress, but it also felt too hurried. I never had a sense of control, just urgency to get it done and over with.  It didn't leave me in a good headspace and I still found myself fretting over the possibility of getting a shot for weeks ahead of time. 

Now, I'm better prepared.  With the help of my therapist and journaling, I've made lists of what is within my control during doctors’ appointments.  I keep a “comfort bag" ready and always bring it with me to appointments.  If I need blood work, I pack my own snacks for afterwards and plan to reward myself with a sweet treat from a nearby cafe.  I also pick out my "victim” arm ahead of time based on which arm feels stronger than day.  

When it's my turn for bloodwork, I tell my nurse right away that I'm terrified and I'm a faint-risk.  I also ask for the reclining chair when possible.  It's not so upright that I'll get dizzy and slump over, but through experience, I've also found that fully lying down feels more vulnerable and heightens my fear.  A reclining chair puts me in a better headspace, so it is important that I advocate for my preferences.  Doing small things consistently and giving yourself small choices in your healthcare can help you feel more in control and you'll know exactly what to expect.   

A drawing of a tote bag and it’s contents on a light purple background. The bag is labeled “My Comfort Bag,” and next to it are a pair of headphones, a pack of tissues, a granola bar, essential oils, a worry stone, phone, and a tennis ball.

Pack A Comfort Bag, Activate Your Senses

In an effort to ground myself, I try to pack things in my bag that activate my 5 senses of sight, sound, smell, taste, and touch.  I always have these items in a bag and ready to go.  Consistency is key, so I bring them with me to all of my medical appointments.  When I’m in the waiting room, I grab my headphones and put on some music.  I also pack sensory items that are calming like fidget toys to distract myself with.  If I’m getting blood drawn, I have a tennis ball handy that I can grip, tissues for when I cry, and a snack for when it’s all over.  This kit can be any size and it should be personal to you.  Here’s a list of what I keep in my bag: 

• Snacks

• Water

• Tissues

• Tennis ball (to grip)

• Lavender essential oil

• Hand warmer

• Electrolytes packet 

• Fidget toy or comfort object (worry stone)

• Headphones for calming music or ASMR 

An image of a ‘box breathing’ exercise on a light purple background. Arrows guide you around the sides of the square, which are labeled: "exhale, hold, inhale, hold.”

Don't Just Wing It, Strategize 

Plan out your day ahead of time.  Plan to have downtime afterwards to chill, recover, and reward yourself.  I like to have a friend or family member drive me to and from appointments just in case I feel dizzy afterwards.  

Pressure therapies or tense & release exercises have also been proven to help calm the body.  Box breathing is another exercise to keep in your toolkit.  It can stop you from hyperventilating and keep you calm.  Make sure to try these techniques out BEFORE an appointment or exposure to your phobia.  Practice makes perfect and not every therapy works for every person.  Find what fits you and make a plan to tackle your phobias.

More Tools and Resources:

• How to Build an Anxiety Toolkit | JED 

• What is a Coping Kit and How Can It Help | Life Adjustment Team 

• Tomophobia: I Fear Doctors, Blood, and Needles. Now What? | Psychology Today 

• 5-4-3-2-1 grounding: How to use this simple technique for coping with anxiety — Calm Blog 

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. 

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.

The Art of Living in the Moment: A Personal Reflection on Life with Crohn's Disease

By Yeabsira Taye Gurmu, Addis Ababa, Ethiopia

Living with Crohn's disease has been a journey filled with ups and downs, but one of the most valuable lessons I’ve learned is the art of living in the moment. Early on, I was consumed by worries about my symptoms and the unpredictability of my condition. I often found myself dreading social events, fearing a flare-up would ruin my plans.

In the midst of pain or fatigue, I remind myself to pause and focus on the here and now. Simple practices like deep breathing or taking a mindful walk in nature help ground me, allowing me to appreciate the beauty around me. Each moment—whether it’s a warm cup of coffee, a shared laugh with a friend— becomes an opportunity to connect with life, rather than merely endure it.

Flexibility is key. Plans may change, but spontaneity can lead to unexpected joy. Embracing these moments, whether it’s a last-minute outing or simply enjoying a quiet afternoon, reminds me that life is happening now, not just in the future I fear.

Building supportive relationships has been essential. Sharing my journey with understanding friends and connecting with others who have IBD fosters a sense of belonging and comfort. These connections remind me that I’m not alone and that it’s okay to lean on others when I need support.

Ultimately, living in the moment while navigating IBD is about finding peace amid uncertainty. It’s about celebrating small victories, practicing gratitude, and recognizing that even in the struggle, there is beauty to be found. Each day is a new opportunity to live fully, savoring the present despite the challenges that come with chronic illness.

Featured photo Sergey Guk from Pexels.

Humour - The Best Defense Against the Realities of Chronic Illness

By Selan Lee from the United Kingdom

In the words of Chandler Bing, “I started using humour as a defence mechanism” - though for me, it is not a consequence of my parents splitting up (just to reassure you, they’re still happily married), but rather a result of my chronic illness.

While there have been difficult moments in my life before and after my Crohn’s diagnosis, I’ve noticed that one of the most significant ways I have coped and helped my loved ones cope with the negativity IBD often brings - is with humour. More often than not, I’m somehow making a joke about poo, the absurdity of hospital scheduling or the horrific taste of Fortisip nutrition shakes. But I had also used humour to make light of bleak health outcomes - for example, when the second of my biologics stopped working, or surgeons tried to push for a stoma just before exams. 

As a Psychology undergraduate, I know this technique is a classic example of an emotion-focused coping mechanism in which I utilise humour to manage the stressful emotions that IBD bring. However, I know as a thinking and feeling human being, if I don’t use humour, it is very easy to fall into the grips of the stress and negativity of chronic illness[1] - and similarly for those caring for us[2]. So, I would like to share some moments where I’ve found humour in my experience with chronic illness, and I hope you will find some, too, in your chronic illness journey.

#1 When you're using the same medication as a lady in her 80s -

Any biologic prescribed to someone with IBD has a high probability of also being prescribed to an elderly individual with arthritis. Given that IBD and arthritis are both inflammatory diseases, just attacking different body parts, it makes sense a twenty-something with Crohn’s will be given the same as arthritic Ethel in her 80s. Thus, I find it infinitely hilarious when I walk into the medical day unit and watch as two or three seniors stare at me in curiosity. I’ve seen many an old bitty’s eyes go wide when they hear that I was born in the year 2000. Confusion when the scales reveal I’m on the heavier side and not outwardly weak or frail. But the best bit of this situation, which still makes me chuckle to this day, is what rarely happens at the end of an infusion. 

Once an infusion is complete, the IV is removed, and a cotton ball is placed on the site to prevent bleeding. Usually, slight pressure and a little bit of time are enough for a clot to be formed and any chance of bleeding out in a medical bay to be reduced to virtually zero. However, on one rare occasion, not enough was applied, and as I got up to gather my things - I felt a warm sensation over the back of my hand. Looking down, I noticed a few drops of blood on the back of my phone case and some staining on the denim of my jeans. Turning to look at my hand, I realised the warm sensation was not my hand warming up after the cold IV stream - but blood oozing out from the infusion site. My hand looked like a Halloween decoration. Perhaps as a result of my lack of aversion to blood or my fatigue, I quietly and calmly asked the nurse for help. What I didn’t realise until I stood there waiting as the nurses scrambled to get the gauze or alcohol wipes was that arthritic Ethel had witnessed a young whippersnapper with a bleeding hand look at said bleeding hand with no fear and simply say, “Excuse me” as I pointed with my non-bleeding hand to the bloodbath - like a complete psychopath. I saw a look of horror and fear of myself, not the blood, in her eyes, and it still makes me laugh to know that she probably told everyone she knew about the psychopathic twenty-something she met in the medical day unit.

#2 A little too familiar with the Bristol Stool Scale -

It is a right of passage to be introduced to the Bristol Stool Scale following a diagnosis of IBD, with 1 being akin to rabbit droppings and 7 to swamp water. My mum quickly started using numbers to check my condition after this introduction. In the early days of a flare, I would be asked, “Number 4, 5 or 6?” as soon as I left the bathroom. However, it also became a way for us to assess unappetising food: a dodgy-looking shepherd’s pie, a 5. A little too watery chocolate lava cake, a 7. It didn’t take too long for us to realise that this scale may not be as appetising to overhear at the dinner table as it was funny for us to quip.

#3 The best way to enjoy a Pepsi is without the fizz -

You develop a strange relationship with food when you have IBD, and for me, during a flare or in the few weeks leading to my infusions, I find fizzy drinks hard on the gut. The carbon dioxide seems to exacerbate the pain and discomfort. But that doesn’t mean the cravings for certain beverages disappear. 

On one such occasion during my flare, I craved a Pepsi - but didn’t want the fizziness it came with. Thus, I hatched a plan. As my parents were preparing to leave for Costco while I convalesced at home, I told them it would be a good idea to get some food, preferably a hot dog, to enjoy themselves and our dog. They returned with hot dogs and, more importantly, cups filled with Pepsi. While they enjoyed their food, I kept an eye on my Dad’s Pepsi. I knew he would have drunk a cup at the store, and this was his refill. I also knew that he never fully finished his second cup of Pepsi. Therefore, I waited for the moment he inevitably left the partially-full cup on the table. Once he left the table, I took the cup, checked the contents and once satisfied - I hid the cup in the fridge behind some condiments. The next day, I gleefully took out the flat Pepsi and downed the drink without the slightest hint of effervescence. I have yet to have a similarly satisfying food or drink experience.

References

1. Naylor, Chris & Parsonage, Michael & McDaid, David & Knapp, Martin & Fossey, Matt & A, Galea. (2012). Long-Term Conditions and Mental Health: The Cost of Co-Morbidities. https://assets.kingsfund.org.uk/f/256914/x/a7a77f9f6b/long_term_conditions_and_mental_health_february_2012.pdf 

2. Lim, Jw., Zebrack, B. Caring for family members with chronic physical illness: A critical review of caregiver literature. Health Qual Life Outcomes 2, 50 (2004). https://doi.org/10.1186/1477-7525-2-50

Featured photo by Fernanda Lima from Pexels

Things I Learned After 1 Year Diagnosed With Crohn’s Disease: Advice for the chronically ill and their loved ones.

By Giana Formica from OH, USA

A year ago today, I was diagnosed with Crohn’s disease and my life was forever changed. My body has gone through a lot in a short period of time. I’ve had four hospital stays, an ostomy bag for three months, two surgeries, and one colonoscopy. I’ve learned so much but this is just the beginning. I’m growing and learning everyday new ways to cope and accept the fact that I’m chronically ill and my life looks a little different than most. I’m proud of all that I’ve accomplished this last year but I am still learning and working on these skills and accepting these changes to my life. 

Progress isn’t necessarily linear.

The unfortunate reality of having a chronic illness means you are going to have bad days. It’s hard to measure your progress when focusing on the negative. 

How to change an ostomy bag.

Really I should say I’ve learned what an ostomy bag is. I have so much respect for my friends with lifelong ostomies. 

If you think you need to use a mobility aid, just get one.

When beginning to search for my own this was the best piece of advice I found. They are made to help people enjoy their lives and not be in pain. Why wouldn’t you want one? 

Art is healing.

Being able to have a creative outlet while growing with the life changes chronic illness brings, makes a world of a difference. 

It’s okay not to be resilient and strong all the time.

As a disabled person, we all hear the phrase “you’re so brave” or “they’re so strong” thrown around by able-bodied folks when referring to our conditions. We deserve to be able to break down and be frustrated about our experiences because sometimes it is just plain exhausting. 

Community building is incredibly important.

Having a support system of disabled friends and able-bodied allies makes such a difference in personally healing. 

Be the representation you needed.

Everyone’s experience being chronically ill is unique. It’s up to you to speak out and use your voice to advocate for what’s important to you.

You are a whole person, beyond your chronic illness. 

Medicine is very scientific. It’s important to remember the holistic aspect of your being beyond your illness or disability. 

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Featured cover photo by Miguel Á. Padriñán from Pexels.