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.

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

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

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

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

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

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

The silent struggle of invisible illness

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

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

Why awareness really matters 

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

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

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

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

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

(Image from iStock, credit: nadia_bormotova)

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

What inspired you to apply for the CCYAN Fellowship? 

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

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

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

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

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

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

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

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

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

What’s your favorite hobby or fun activity? 

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

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

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

What is your favorite way to relax or unwind? 

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

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

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

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

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

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

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

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

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

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

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

What is your favorite way to relax or unwind?

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

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

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

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


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

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

What’s your favorite hobby or fun activity? 

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

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

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

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

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

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


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

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


How has your experience with IBD shaped you?

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


What’s your favorite hobby or fun activity?

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


What is your favorite way to relax or unwind?

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


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

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

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

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

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

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

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

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

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


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

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


What’s your favorite hobby or fun activity?

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


What is your favorite way to relax or unwind?

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


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

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


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

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

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

What inspired you to apply for the CCYAN Fellowship?  

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

A.R. Rahman 


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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

What is your favorite hobby or fun activity?

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

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

What inspired you to apply for the CCYAN fellowship?

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

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

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

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

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

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

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

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

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

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

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

What is your favourite hobby or fun activity?

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

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

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

If you could have any superpower what would it be?

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

Navigating the "Why Me?" Season of Chronic illness

Yeabsira Taye Gurmu: Addis Ababa, Ethiopia

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

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

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

Featured photo by Disha Sheta from Pexels.

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

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

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

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

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

Exclusive Enteral Nutrition (EEN)

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

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

Partial Enteral Nutrition (PEN)

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


Crohn’s Disease Exclusion Diet (CDED)

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

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

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

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

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

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

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


Diets for Ulcerative Colitis

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


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


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


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


Featured photo by Dana Tentis from Pexels.

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

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

By Maria Rouse from NC, USA

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Fighting, Grieving, and Enduring Entropy

Fighting, Grieving, and Enduring Entropy   

By Zahraa Chorghay, Montréal


Trigger warning: mental health, death

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

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

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

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

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

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

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

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

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

Baji Ammi had passed away.

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

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

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

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

My Journey of Advocacy as an IBD Patient in Africa

My Journey of Advocacy as an IBD Patient in Africa: A Medical Student's Perspective

By Yeabsira Taye Gurmu, Addis Ababa, Ethiopia

As an IBD patient living in Africa and a medical student preparing to become a doctor, I have come to deeply appreciate the importance of advocacy. Living with a chronic illness can often feel isolating, especially in a context where awareness about conditions like IBD is still developing. Through my own journey, I’ve realized that advocacy is not just about raising awareness; it’s about creating a sense of community and support that can make a significant difference in the lives of those affected by IBD. However, I’ve also learned that it’s crucial to balance this advocacy with my need for personal peace and maintaining my boundaries.

In my efforts to advocate for IBD awareness, I’ve found that it’s essential to be selective about what I share. While my experiences can help others understand the challenges of living with IBD, I’ve recognized that I don’t have to disclose every detail of my journey. Setting clear personal boundaries allows me to engage in advocacy without compromising my emotional well-being. For example, I choose to focus on the broader message of understanding IBD rather than delving into the more painful aspects of my experience. This approach not only protects my mental health but also helps me stay purposeful and impactful in my advocacy work.

I’ve also learned the importance of self-care while engaging in advocacy. It’s vital for me to participate in discussions and support groups at a pace that feels comfortable. Sometimes, this means stepping back and taking time for myself to recharge. I’ve found that when I prioritize my well-being, I can engage more authentically and passionately in my efforts to raise awareness for IBD. Encouraging others to find their own balance has become a priority for me, as advocacy is most effective when it aligns with our personal values and comfort levels.

By sharing my experiences thoughtfully and prioritizing my well-being, I can contribute meaningfully to the conversation around IBD without losing sight of my own needs. As I continue my medical training, I aspire to inspire my peers to embrace the significance of patient-centered advocacy. Each voice is important, and together we can foster a supportive environment that not only raises awareness but also honors the individual experiences of those living with chronic illnesses like IBD.

Featured photo by Steve Johnson on Unsplash.

The Never-Ending Cycle of IBD

The Never-Ending Cycle of IBD

By Selan Lee from the United Kingdom

Many things in life are cyclical: the seasons, fashion trends, and the moon’s phases. The one thing we all hope isn’t cyclical is illness. Who wants a never-ending cycle of health and disease? But for those who are chronically ill, it is an unfortunate truth that I previously thought I had accepted - until three months ago.

Three months ago, the symptoms that had started it all returned: frequent diarrhoea, bloating, gas and nausea. In retrospect, stress seems to be a determining factor in my cycle of Crohn’s. My first flare was during the final months of my A-levels - a set of exams that would determine my future according to my 18-year-old self. My second and current flare began two weeks before my graduation and coincided with the final interview for a job I desperately wanted to pass. Unfortunately, the consequences of the stress-inducing circumstances were also cyclical. I severely underperformed in my exams and panic-attacked my way to a re-sit the following year. I didn’t pass the interview and was faced with ending university without a stable job to move on to. Healthwise, like the first flare, I was admitted to the hospital soon after graduation.

Maybe because I had experienced five years of relative good health since my diagnosis, I thought I had accepted the chronic nature of Crohn’s. Despite becoming resistant to a few biologics - I went to university, sourced and worked in a consultancy for my placement year, attended my first concert, joined a panel for young adults with IBD and was able to socialise with friends and family without much concern. My brief period of normalcy had blinded me to the fact I hadn’t really accepted the cyclical nature of my condition, and to be honest, no one with IBD or a chronic illness does.

I remember when someone asked during a panel how people with IBD cope, and the members and I all said hope helped us to cope. Naively, I equated coping with accepting. That’s far from the truth. I can cope with my biologic no longer working as there will be another one. I can cope with waiting for the night shift doctor to prescribe paracetamol for my abdominal pain. I can cope with forgoing foods and situations that will worsen my IBD. But I can’t accept that this will happen again. Understanding and coping are one thing, and acceptance is another.

How can I accept that I will progress through life feeling alone because of my IBD? Like I am sitting on an ice floe floating past all of life’s possibilities. Maybe it is pessimism talking, but living with IBD can be akin to the myth of Sisyphus. Many of us will spend our lives pushing the boulder of IBD to remission - with some, like me, falling back to flare. But maybe, in the words of Albert Camus, I will achieve happiness in this absurd repetition and be satisfied regardless of the outcome. Then again, Captain Raymond Holt says, “Any French philosophy post-Rousseau is essentially a magazine.” [1] - so I will wallow in my pessimism for a while. I might be able to see the brighter perspective of Camus and Terry Jeffords once my new meds prove to be successful.

References

  1. “Brooklyn Nine-Nine” Trying (TV Episode 2020) - IMDB. (n.d.). IMDb. https://www.imdb.com/title/tt10322288/characters/nm0187719

Featured photo by Frank Cone from Pexels.

Stressing about Stress: When Living with IBD

Stressing about Stress

By Maria Rouse from NC, USA

“I’m so stressed.” As a young adult just starting graduate school and recently graduated from undergrad, this common refrain often echoes through hallways, classrooms, and study spaces as a steady hum. Just saying it can create some relief for the stressed person, since putting out into the world that you are stressed is still often stigmatized in academic and workspaces that prioritize competition and elitism. But for a lot of people, especially neurotypical and non-disabled folks, the thinking about stress or the health impacts of it largely ends there for all intents and purposes. 

However, for chronically ill people and particularly those with autoimmune diseases like inflammatory bowel disease, thinking about stress quickly compounds on itself and becomes meta: it is so easy to become stressed about your stress knowing how negatively it will impact your health. And it goes without saying that this extra stress is not exactly great for keeping Crohn’s or ulcerative colitis flares under control either.  

The primary mechanism through which this works physiologically is that when people with IBD are stressed, perhaps due to a traumatic life event or school/work burnout, our brains release a stress hormone called corticotropin-releasing hormone (CRH). CRH sends a signal to our adrenal glands to release another group of hormones called glucocorticoids. Glucocorticoids, in turn, then send signals (e.g., colony-stimulating factor 1) that direct immune cells to the intestine that increases the production of tumor necrosis factor (TNF) that causes increased intestinal inflammation. And then boom, before you know it and can manage it, you are in the midst of a flare.

I have often found myself jealous of the relative simplicity of stress for people who do not soon become physically ill from its effects on their body. While chronic and/or severe stress generally has negative consequences for peoples’ health down the road (e.g., increased risk of cardiovascular disease, development of chronic conditions such as diabetes), your average person generally does not regularly grapple with these long-term health outcomes on a daily basis until they become acutely present potentially years down the line. There is a privilege in being able to be stressed without being stressed about being stressed. On the other hand, with IBD, folks are more likely to have to grapple with a stressful flare on top of the current stressful situation they are facing. Simply put, when it rains, it pours. 

A lot of the well-intentioned but poorly thought-out wellness initiatives now prevalent in workplaces and academic settings will tell you to take deep breaths or practice self-care (what that really means, I still am not sure) to help manage your stress. Anyone with an autoimmune disorder or chronic illness knows, however, that these stress management techniques do not remotely even cover our needs. Stress prevention often needs to be much more comprehensive and planned out in terms of prioritizing activities by the number of spoons (amount of energy) you have that day, consistently getting adequate sleep every night, giving oneself grace and flexibility for not being super productive because of fatigue or a random resurgence of symptoms. It involves taking extra care to avoid chronic condition flares, to the degree we have control over them (i.e., stress levels), early and often. 

There is nothing we can fundamentally do to change the fact that having a chronic illness or disability often comes with negative health impacts from stress, which is an inevitable part of life. What we can support changing, however, is the status quo around stress management from something discussed as part of wellness initiatives aimed simply at placating students, employees, and community members seeking greater work-life balance, to an approach of stress prevention. By involving more preventive and intentional techniques (i.e., managing energy levels proactively, intentionally planning ones diet to avoid inflammatory foods), stress prevention can benefit not only the chronically ill and disabled, but also the broader population; as chronically ill and disabled people, we can change the landscape of stress into something that is more intentionally and thoroughly broached in our communities, and by doing so, work to alleviate the stress of being stressed. What is beneficial for those who need accommodations is also beneficial for all.


Sources

  1.  https://www.scientificamerican.com/article/see-how-stress-affects-inflammatory-bowel-disease/


    2.  https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress-symptoms/art-20050987#:~:text=Common%20effects%20of%20stress,%2C%20stroke%2C%20obesity%20and%20diabetes.

Featured photo by Pedro Figueras from Pexels.

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

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.

Why Finding Your People Matters

Why Finding Your People Matters 

By Maria Rouse

It took me nearly 15 years to begin finding community as someone with inflammatory bowel disease. It was a very lonely 15 years. 

I try not to be so hard on myself, since I was first diagnosed with IBD when I was 10. There is not much in the way of accessible peer support for youth with IBD, especially at that young of an age. It was not an option I ever realized could be possible through my health system, and social media as a platform for peer support was just beginning at that time.  

My inability to find community led to a false perception of singular failure. I was the only person my age that I knew with IBD, and consequently internalized ableism spread malignantly within my mind and began marring my conception of myself. 

With the stigma associated with IBD, it is also not something you typically share about yourself with other kids on the playground, or even when you’re getting to know people during orientation at college. I have met several friends that I only much later learned had IBD. 

Ableism is a key motivating force in keeping us silent from sharing our stories and lived experience with others. Ableism is part and parcel of patriarchy, colonialism, racism, sexism, or most of the negative isms that still permeate society. It encourages us to remain alone in our journeys as chronically ill people. 

In a system that often tries to force us to act individualistically and hide our unique qualities for the sake of its imposed and exalted definition of success, building disability community is a light in the darkness. It is in itself an act of resistance and radical vulnerability in a society aims to police abnormality and difference. This can make us believe that our challenges and needs are uniquely too much, when nothing could be further from the truth.  Community reminds us of our humanity as chronically ill people. 

In any setting, making new connections and friends can be terrifying, particularly if you have felt so alone and different all your life as a person with a chronic illness. It can feel especially vulnerable to join a support group discussing such sensitive topics as disordered eating and body image with a whole new groups of people. But forming community through a group such as CCYAN is so worth any initial awkwardness or difficult topics. 

The reality is that peer support is not just about you, although it often is cathartic and restorative to know we are not alone and to learn how others managed the difficulties that IBD created in their lives. Peer support is also an act of advocacy, allowing disabled and/or chronically people to take up space when so often our voices are not heard. Building community is an act of advocacy for yourself and also others who may still face barriers in sharing their experiences. 

In short, don’t wait years to engage with peers who have IBD. Make time for that peer support group meeting, attend that advocacy event, or connect with peers over Instagram. There are typically more obstacles for chronically ill people to engage with peers, whether that is being immunocompromised or having limited spoons or energy. However, engaging with other IBDers in whatever format is accessible to you is well worth the effort. Life is truly all about connections, and the ones you make with those who have very similar experiences as you can be some of the strongest bonds you will experience. You never know what can come out of it, and how the world could be changed for the better. 

Featured photo by Darrel Und from Pexels.

Cathartic Crohn's: A Patient's Reflection

Cathartic Crohn’s

A Patient’s Reflection on Stickman - The Vicissitudes of Crohn's by Artist Spooky Pooka

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

The experience of extreme abdominal pain that feels, quite literally, gut-wrenching and it comes the debate in my head: Should I go to the hospital or not? In peristaltic waves, I wonder “Can I just bear thru it? I really dont want to go to the hospital.” It’s not just a hospital stay. It’s taking time off work. It’s bothering family to transport and take care of me at 26 years old. It’s wondering when I’ll ever be normal again. These thoughts and feelings are no stranger to me when I experience an abdominal flare, and I am sure it may sound familiar to you as well. Perhaps artistic expression can capture some of the emotions and thoughts we experience in our time of distress. 

Spooky Pooka is a professional illustrator and artist from Brighton, England and a Crohn’s patient and captures his view of Crohn’s disease through this piece. I encourage you to read through his poems and artistic pieces. Of his amazing work, I want to highlight a few pieces that stood out to me:

From the section, Quod Me Nutrit Me Destruit “What Nourishes Me Also Destroys Me”

“A blind conspiracy of T-cells

A dissonance within, a mute fluttering

The dolorous baying of ravenous entrails

The moxi drawn from reticulated limbs

And the world shudders down under black wings

To void all memory

To disgorge all resonance

To vomit all in exegesis of viscera”

Without having spoken to the artist myself, I will not attempt to predict what he was thinking. So, I will speak to share why I found this so fascinating as a medical student who suffers from Crohn’s Disease. The “blind conspiracy of T-cells” is exactly how autoimmune disease behaves. In normal function, T-cells use markers on cells to identify what’s our body marker vs a foreign body marker (which has to be eliminated). In autoimmune disease, that self body marker can be confused with a foreign body marker and cause T-cells to attack normal healthy tissue. In IBD, this happens within the GI tract. A “blind conspiracy” leads me to believe that T-cells act on their own accord, led by misleading signals, and hypervigilant to any suspicious activity. 

Words like “dissonance within”, “to void all memory”, “disgorge all resonance”, “vomit all in exegesis of viscera” describes a state of body that is so critical of itself, ready to eliminate any imperfection or any disconnection from the true self that it destroys the entire body. It reads as if the T-cell is a delirious warrior who once was a hero of sorts in his right. But now, this T-cell warrior has lost his way, driven mad by his rage, and killing his own people in frenzy. 

The piece captures the human skeleton with a deer skull and antlers kneeling while holding its belly as old weeds spill out. The background shows perhaps floating T-cells with human eyes. It captures the visceral pain of an abdominal flare - a posture I personify with too easily. It also captures the despair against the T-cells in their march for self-destruction. It seems nothing can escape itself. 

Despite this grave depiction, Spooky Pooka ends the graphic series with a final poem that implies a sense of hope. In the section Dolor Hic Tibi Proderit Olim “Some Day This Pain will be Useful to You”, it is the ending lines I reread over again.

The tree’s womb may regurgitate old souls

If only for one moment…

It may grow flesh like life

I’m not sure what it means. I’m not sure why it fascinates me. Perhaps I am desperate to find meaning and purpose behind my suffering. That my abdominal pain will somehow manifest as strength in my nearly malnourished body. Or that my constant fatigue and uncontrolled bathroom breaks is somehow a sign of strength. During my hospitalizations, when I was most alone, I would think that “maybe suffering is just pointless suffering.” 

But this poem and the picture behind it gives me hope. Like branches of a tree, my suffering can extend out and reach out towards others. To grow from untreated soil and serve others who will walk the same path. A hand to hold in suffering together. 

Featured photo by Soonam Wooeser from Pexels.

Check out the inspiration for this post on Spooky Pooka’s website.

We are all pandoras, each with our own boxes - but we all have hope.

We are all pandoras, each with our own boxes - but we all have hope.

By Selan Lee from the United Kingdom

Suppose you live in the UK and have any interest in inflammatory bowel disease (IBD). In that case, you will likely have recently seen news articles in which researchers from University College London, Imperial College and the Francis Crick Institute announced they had found a section of DNA present in 95% of people with IBD, which causes an excessive immune response and consequently inflammation.[1] This news has been greatly welcomed by many in the IBD community here - myself included. However, the feelings the announcement generated are weirdly reminiscent of a conversation I recently shared with others with IBD.

Last month, I met with members of the Young Adult Advisory Panel - a fantastic group committed to helping Crohn’s and Colitis UK meet the needs of the IBD young adult population. As we walked to the social venue, the conversation led to how we each coped with the often tumultuous nature of IBD. It soon became clear that the common thread for all of our coping methods was hope. Some hope for research breakthroughs. Others hope for a reduction in flare symptoms, and a few hope for a good blood test result. 

Living with a chronic illness can quickly diminish hope for many and unfortunately lead to poor mental health. Research suggests that around a third of individuals diagnosed with a life-changing chronic illness will experience symptoms of depression.[2] But, as so many of us with IBD will tell you - hope is never truly extinguished. 

Over the years, hope has taken on several names—the indomitable human spirit, desperation, or perseverance—but it has never disappeared from the human consciousness. Unfortunately, IBD and chronic illnesses have also been present in humans’ lives for an equally long time. But instead of looking at this longstanding relationship as parasitical, I rather see it akin to the prevalence of the myth of Pandora’s box throughout history.

We all know of Pandora’s box, a myth that warns of unchecked curiosity and disobedience when Pandora unleashes evil into the world when she opens a box left in her care by the Gods. Despite all the horrors she releases, hope remains and enters the world, providing humans with the resilience necessary to live in a world filled with such evils. This story has been used for many reasons: to curb curiosity and provide hope. We’ve all faced bleak circumstances where we have relied on hope to see us through.

Life with IBD is no different. We have all faced negativity in some form with IBD - whether that be a medication failing to work, health professionals denying you agency or being limited in your capacity to spend time with friends and loved ones. But like Pandora, we know that there is hope, and with that hope, in the words of Martina Sazunic, we use that hope to “build a ladder” and make the best of our respective situations to reach what we are hoping for. Thus, we are all Pandora.

We all are Pandoras, each with our own boxes, living with the negativity wrought by these boxes—but we all also have hope. So, while that breakthrough in research might, in some eyes, look like a minor step forward in the ambiguity of IBD - it is also a reminder that hope is what empowers us to continue advocating for better lives with IBD. So, from one Pandora to another, hope is in your box - don’t forget that.

References

  1. Gallagher, J. (2024, June 5). Major cause of inflammatory bowel disease found. BBC News. https://www.bbc.co.uk/news/articles/c1wwdd6v2wjo#:~:text=A%20major%20cause%20of%20inflammatory,excessive%20inflammation%20in%20the%20bowels.

  2. Professional, C. C. M. (n.d.). Chronic illness and depression. Cleveland Clinic. https://my.clevelandclinic.org/health/articles/9288-chronic-illness-and-depression

Featured Photo by Pixabay from Pexels.