Managing Major Life Events with IBD

TW: upsetting emotions, house fire, PTSD, mental health

Every person on earth has to go through the rollercoaster called life, facing major ups and downs during the course of their time here. Having a chronic, debilitating illness does not save you from facing other major life-altering events. Managing these events and getting up every day is a life skill that one builds over time.

In Spring of 2020, as the COVID-19 pandemic ravaged the world, I sat locked up safely in my apartment in New Delhi thinking of what to eat as my refrigerator was devoid of any vegetables or fruits. Delhi was under lockdown, and the few times we were allowed to go out to shop, I would have to go when it wasn’t too crowded (due to being on immunomodulators and with no sign of vaccines), and reach the grocery stores to find all unprocessed stocks of produce gone. I weighed my remaining options and it came down to cooking up hot meals of oatmeal or khichdi. I didn’t want hot meals since the Indian summer heat was well on its way, and all the air conditioners in the home were nonfunctional. 

Because of the pandemic and subsequent lockdowns and curfews Delhi was facing, all services (like the local electrician service) stopped. After many days of desperation in the heat though, I just couldn’t take it anymore. I finally arranged for the electrician to check the air conditioners out. 10 minutes before he was due, I thought of prepping for him to see they were not working. I put one of the air conditioner’s plug into the socket, took the remote and turned it on. A strange and loud whirring noise took me by surprise, and I stared to see what would happen next. About 5 seconds later, I saw smoke rising out form the top, initially thinking it was the vapor from the heat in the room. Another few seconds later, there was a bright yellow light and, lo and behold, a fire had started. My reaction should have been to freak out but I was just SO fatigued and thought “I can’t deal with this right now.” I half-thought about going back to the living room to finish a meal I had just finished cooking for myself and letting the fire be, but reality caught on and I started to freak out when I remembered I lived in an apartment so the fire was going to spread to other homes. 

My reaction should have been to freak out but I was just SO fatigued and thought “I can’t deal with this right now.”

My first instinct was to tell my parents but they were posted in a remote country where most of the popular calling channels were blocked. I tried calling my mother through an app that hanged and would not cooperate. With the call still ringing, I reached for the main door to warn the neighbors but ran back inside to save valuable papers first in the room with the fire. I entered the room to see the thick smoke spreading faster than I could recall what to collect and where it was. Before leaving, I took a deep breath and removed the plug from the socket, turned it off, opened the windows of the room and heaved a sigh of relief the damn air conditioner hadn’t fallen on top of my head. I quickly accepted I needed to leave my valuables, meal and home behind, and ran out to tell the neighbors who called the firefighters. With the pandemic in full swing, the firefighters took a while to arrive and as they opened the main door, a thick cloud of black smoke engulfed us. None of us could see ½ meter ahead of us. The brave men took some time, but eventually extinguished the fire. I was very fortunate to not lose too many valuables, but the entire apartment was left in sticky black soot, with little soot particles falling like rain everywhere around me. It felt impossible to clean up. It was impossible to live there. 

After the fire, the next challenge was to find a place to live. Find a place to live, during a pandemic, with a suppressed immune system – easy. I didn’t have any immediate family in the state, and strict curfew rules made it nearly impossible to travel outside the state. The first few nights after the fire, my amazingly kind neighbors took me in but those nights were rough. For several nights I heard the whirring sound and jumped up to save myself from my inaction. After this event, my extraintestinal symptoms like brain fog and fatigue worsened drastically. Eventually, my cousins from the adjoining state arranged for me to come live with them, taking some time for official permissions.

Before leaving, I felt a responsibility to rescue the apartment and stuff my parents had painstakingly collected over the years from their international postings. With no available cleaning services in sight, I was soon wrapped up in what seemed like an infinite loop of wiping one product after another, only to redo the entire process again as soot resettled on it. The walls looked like they’d had a new black paint job, and soot cobwebs danced at every corner. Yet clean I did, through a physical and mental haze, and managed to wrap everything except the furniture up. I remember having to wash my hands after every new item I touched because the sticky soot made it impossible to clean. By the end of the 3-day rigorous clean up, my hands were very dry and semi-permanently stained black. It took me multiple weeks to rid myself of the stains when I moved to my cousin’s home.  

My mental health deteriorated significantly over the summer. As a result, my extraintestinal symptoms worsened. I was sleeping for most of the hours of the day, and spent the rest in bed. I was so fortunate to have empathetic family members that took care of me and didn’t judge me for my invisible struggles. But I felt I’d had enough and needed a breather. Literally. Multiple times a day, I would feel like my chest was tightening up, my nose felt blocked throughout the day and I lived in a cloudy haze. As services slowly opened up, a mature me didn’t want to dismiss my new symptoms and I immediately booked an appointment with my GI, who recommended some blood tests and we found that everything came back normal. In fact, those blood tests were probably the best I’d had in a long time. But my situation was not getting better, only worse. Ultimately, I managed to get on a one-way flight to my parent’s posting passing through 2 continents and 3 flights, while all international airports were minimally functional. I slept for 14 hours straight after I landed. 

At every step of the pandemic, whether it was arranging a steady stock of medication or food through hoarding culture, fighting a house fire and acting responsibly through the haze, cleaning up (on a one-man team) what resembled a coal mine, or taking my symptoms seriously and arranging to get my illness checked, all with a suppressed immune system, makes me appreciate how far I have come at managing life events.

When I reflect back at this time, I feel incredibly proud of myself and tremendously thankful to my empathetic neighbor and family members. At every step of the pandemic, whether it was arranging a steady stock of medication or food through hoarding culture, fighting a house fire and acting responsibly through the haze, cleaning up (on a one-man team) what resembled a coal mine, or taking my symptoms seriously and arranging to get my illness checked, all with a suppressed immune system, makes me appreciate how far I have come at managing life events. Most importantly, I am proud of the way I got up every single day and faced every new impossible step, keeping my hope alive. My hope was well protected by my kind neighbor who graciously took me in, fed me, and talked me through my experience, and my loving family who did impossible things just to keep me safe and support me through the cloudy aftermath. I’ve learnt that managing major life-altering events like these are possible with individual grit, determination and an understanding support system who stop you from succumbing into a negative spiral. With IBD, a major life skill is prioritizing things you can control in events you can’t. In these trying times, I did my best to keep to my safe foods, take all my medications on time, limit other stressors, and stay on top of my illness by getting it checked and keeping my GI in the loop. In terms of PTSD, I am still very nervous around air conditioners. At this moment, I can’t afford a therapist and so do my best to educate myself on PTSD and healthy relaxing coping mechanisms. 

Being Present: How to Live Well in Times of Sickness

For IBD patients, it can feel as though we are constantly running on a hamster wheel of chronic illness. The symptoms may go away, but they often come back. The fatigue may falter, but soon, your battery is depleted. In the past, I’ve written extensively about self-care and patience with treatments, but I wanted to share about ways that I’ve learned to be well in times of sickness. 

Lately, I’ve been delving further into disability literature and critical theory, attempting to find some sort of theoretical basis for the suffering we undergo as IBD patients. In particular, I have found a great deal of solace in Susan Sontag’s ‘Illness as Metaphor,’ penned in 1978. In this seminal piece, Sontag writes, “everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.” 

To be in good health is fleeting, even when it is taken for granted. Being diagnosed with Crohn’s in the middle of my undergraduate experience has taught me this much. The grueling sensation of grappling with a disability, however, comes with a paired urgency that we must appreciate the good moments as they come. Being an IBD patient has made me more present-minded, aiming to be content with the present rather than being so focused on the uncertainties ahead. 

Taking walks is one way that I incorporate wellness into my daily routine: so important to take breaks and remember what’s truly important! 

Learning to prioritize wellness is no easy feat; it certainly requires a growth mindset. As with anything in life, a learning curve is difficult to adapt to, but prioritizing one’s well-being could not be important. While I’ve written about the importance of accommodations in the post-COVID era, it’s crucial to extend such compassion to ourselves! 

In the same piece, Sontag finishes by noting, “how reluctant we are to admit that there is only one kingdom and some of us simply have yet to travel its rockier terrains. It is inevitable. We will all need care. We will all long for accommodation. Until then, we can choose to what extent we want to indulge the fantasy that wellness is a condition we have somehow earned, instead of an ephemeral luck that is guaranteed to run out.” 

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My challenge for our readers is to pause, take a deep breath, and recount what you are feeling at this very moment. In recognizing that we do live in two kingdoms, one of health and one of sickness, we ought to grant ourselves a chance to be present, wherever our lives may take us in the next breath.

A Disease Quartet

This article is by Vasiliki-Rafaela Vakouftsi from Greece.

Photo by cottonbro from Pexels.

My illnesses have shaped my life in ways I did not ask for or want, but it is important that I would not be who I am today without them.

My name is Vaso.

A disease quartet works non-stop to disrupt any notion of normalcy in my life. I was diagnosed with Crohn's disease at a very young age and the diagnosis of psoriasis and psoriatic arthritis followed very soon. Having come to terms with these diagnoses, I hoped that my life would return to normal.

Some years later, at the age of 25, I was diagnosed with adrenal insufficiency. Luckily I did not realize how sick I was then or maybe I subconsciously chose not to think about it. I was diagnosed with adrenal insufficiency in April 2020. No one told me exactly what caused it, I was told that this was probably an autoimmune etiology - my point, I collect them.

That day I learned that high cortisol is harmful, but low cortisol can be deadly. My diagnosis of adrenal insufficiency was not something I easily accepted and I do not think anyone had prepared me for all the upheavals it would bring into my life. It was like falling asleep and waking up in a parallel universe.

In one night, every minute of every day had changed irrevocably. Before the spring of 2020 I had not heard anything about adrenal insufficiency. I was in the hospital, thanks to the privilege of access to modern medicine, I soon had a diagnosis. But what is it like to have a diagnosis that, in a crisis, the result can be potentially fatal?

“In one night, every minute of every day had changed irrevocably.”

Looking back on the course of the diagnosis, I have a feeling of tremendous frustration. But I also remember doctors - who perhaps literally - saved my life. The literature assures that patients with adrenal insufficiency live a completely normal life. I will disagree, at least until the moment this text is written, since after my diagnosis and while receiving replacement therapy, my daily life and functionality have been significantly affected. Adrenal insufficiency had been around for several months when I was diagnosed.

I lost weight for months and I did not know why. For months I had nausea, dizziness, fatigue and many other symptoms. It has been a little over a year since I was diagnosed. I have not yet regained my functionality, but my life is probably no longer in danger, not to a serious degree at least. I have not become "normal" again, nor does the treatment work as well as I would like.

Adrenal insufficiency is a daily challenge in its management.

Every time I am confronted with an event that causes me physical or emotional stress, I ask myself: "In this situation would a healthy body produce more cortisol?". If the answer is "yes", then I take a little more hydrocortisone.

I visited several endocrinologists. Most of me left with a weight of a non-productive appointment, disappointed, I felt like I had wasted more time, that I was in the middle of nowhere again. Many times during this process I felt the "I do not know what to do with you" from the doctors in front of me.

“Many times during this process I felt the "I do not know what to do with you" from the doctors in front of me.”

All of us at some point in our lives experience an experience that defines us, what we say "changes our lives". Usually, such socially acceptable experiences are a marriage, the birth of a child and some more. For me, this crucial experience was when I was diagnosed with Crohn's Disease. The second crucial experience was the diagnosis of adrenal insufficiency, a rare diagnosis that is potentially life-threatening in a crisis, a diagnosis with a disease I had never heard of before.

I felt defeated, as if the world had suddenly stopped. Hope hit a wall with 100km/h, when the doctor said "there is nothing else we can do, you have to learn to live like this". Punch in the stomach! Whatever he said after that, I did not hear.

"Learn to live with it." What did this mean for my life?

My illnesses have shaped my life in ways I did not ask for or want, but it is important that I would not be who I am today without them.

Illness makes you re-examine your life as a whole, your priorities.

The disease leaves you naked and exposed, because anything familiar until then may be a potential enemy. The disease forces you to go deeper into your deeper layers.

I will never be healthy again and that has changed the way I look at things: my body, my health, my relationships, my work and my life. When things get tough, people tend to say, "This is going to pass." But what happens when this is never going to pass?

Homemade Indian Condiments with Lessened Ultra-Processed Ingredients

“A higher consumption of UPS products especially ultra-processed grain foods, fat, sauces and emulsifier/thickener-containing foods was associated with increased risk of CD.” – Dr. Chun-Han Lo from “Ultra-Processed Foods and Risk of Crohn’s Disease and Ulcerative Colitis” at the Digestive Disease Week 2021. Read more on the recap by CCYAN 2021 fellow, Savannah Snyder, here.

 As pointed out by Savannah, while results like this may seem obvious, actual recorded data on specific dietary patterns and their consequences on IBD are limited. This makes studies like this very important in guiding our understanding of how best to manage our unique IBD journeys.

Ever since I was diagnosed with UC, runs to grocery stores have become frustrating tasks for me. Where before I wouldn’t think twice about picking up something cool to drink in the Indian summer heat, or an easy to make pre-made meal for when I was too tired to figure out a whole meal for dinner, I now have to drag myself on through aisles and aisles of excitingly packaged ultra-processed foods. The marketing companies know exactly what they’re doing, because even with food trauma, my eyes often take a while to move along through the cereal, juice, snack and condiment rows. One of the most challenging food break-ups I have is with condiments. I LOVE condiments. Mostly because they’re so versatile and can add on so much to any dish. I especially found it, well, still find it, hard to part ways with hot sauce, but of course that’s dynamite for my body and not sustainable. After shedding some tears *cue tiny violin in the background*, I realized Indian cuisine houses a lot of homemade condiments – they show up frequently on our dinner tables. Most of these chutneys have strong and unique flavors, which can help with boredom from safe foods (if your body allows the ingredients or their substitutes). Below are three of my favorite chutneys – chosen to be as easily replicable as possible around the world, and as easily substitutable in ingredients for different diets as possible (low FODMAP, dairy-free, vegan, gluten free).

TAMARIND CHUTNEY (yields 1 cup)

 Ingredients:

Image of tamarind chutney from https://honestcooking.com/khatta-meetha-date-and-tamarind-chutney/

• 100g dried seedless tamarind OR or tamarind paste

• 4 dates OR date paste (1 tbsp) OR date syrup (2 tbsp)

• 30g jaggery OR Molasses (3 tbsp)

• 1 cup water

• salt to taste

Steps:

1. Boil seedless tamarind in water until soft. If using paste, mix with hot water till desired consistency.

2. Pass through a sieve into a medium bowl.

3. Add pitted dates/date paste/date syrup and jaggery/molasses. Blend until smooth.

4. Add salt, as per taste.

COCONUT CHUTNEY (yields 1 cup)

Ingredients:

Image of coconut chutney from https://www.vegrecipesofindia.com/coconut-chutney-recipe-coconut-chutney/

• 1 fresh coconut

• ½ cup yogurt (dairy free/lactose free as per requirements)

• ¼ cup roasted and soaked (for 1 hour) chana dal

• 1 green chili

• salt to taste

Optional tadka

• Coconut Oil (1 TSP)

• Mustard Seeds (¼ TSP)

• 1 twig curry leaves

Steps:

1. Cut coconut in small pieces/grate. Put in a blender.

2. Add the rest of the ingredients and blend.

3. For optional tadka, heat coconut oil in a pan on medium heat. When heated, add mustard seeds and curry leaves and switch off immediately.

4. Top off coconut chutney with tadka.

GREEN CHUTNEY (yields 1 cup)

Ingredients:

Image of green chutney from https://www.carveyourcraving.com/green-chutney/

• 150g fresh cilantro

• ½ lime

• 1 red onion (small)

• 3-4 cloves garlic

• 1-inch piece ginger

• 1 green chili

• salt to taste

Steps:

1. Wash cilantro thoroughly 2-3 times. Put in a blender.

2. Add sliced onion, garlic cloves, chopped ginger, green chili and blend.

3. Top with lime and salt to taste.

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[The above-mentioned study discusses the role of UPS products in increased risk for CD but not UC. However, other studies have shown an increased risk with UC as well [1] It goes without saying, too, that a higher consumption of UPS products is associated with other illnesses not limited to IBD, and are negative for our overall wellbeing.]

1 https://pubmed.ncbi.nlm.nih.gov/34261638/

Long Term Reminders Of an Ostomy After Reversal

October 2nd was World Ostomy Day, and another reminder of the time I spent with an ileostomy. When you first get an ostomy, there is a lot of information that the doctors and the rest of the healthcare team like to give you. I remember learning about how I would feel, what to expect from recovery, what foods to eat, how to change my ostomy bag, and how to care for my stoma. All of this information was helpful in transitioning smoothly into my new role as an ostomate.  What I think is less common to discuss is how an ostomy influences your life even after reversal. While this information isn’t prioritized, I believe it is helpful to understand the subtle ways you’ll be reminded of your ostomy long after it ceases to be a part of your daily life.

Below, I share some of the realities I’ve experienced as a former ostomate. I am not too far removed from my ileostomy back in 2018, but I have a feeling these will ring true for years to come. I also want to note that I know not everybody is as fortunate as I was to have a choice in my ostomy, and I understand that the experience can be different as a result of an emergency. I hope that whether your ostomy was a pleasant experience or a poor one that I can help to prepare you for what to expect after reversal.

Scars

My current ostomy scar. Results may vary.

One of the most obvious reminders of my time as an ostomate is the scar where my stoma used to sit. That little thumbprint scar is a physical reminder of that period of my life. I’ve heard that people don’t like having scars on their body, but I wear mine proudly. To me, it represents resilience and strength. If you have an ostomy scar, I urge you to search for your own meaning and identity in your scar. When you look at it, let it remind you of how far you’ve come. Try to focus on the positive ways it has changed you, rather than the circumstances that lead you to need an ostomy in the first place.

Foods

When I had an ostomy, one of the things that my healthcare team advised me was to change my diet. In order to minimize my chances of a blockage, I was advised to limit eating too much insoluble fiber. Now, I didn’t exactly take their advice the first time, but after the tragic broccoli green bean blockage of 2018 I certainly started paying more attention. Now, years later, I still search my plate when eating green beans to make sure I haven’t paired them with too much other fiber, even though I know I would handle it fine now. It can be hard to change the diet habits you’ve built with your ostomy, but if your healthcare team tells you that you can make some swaps after your reversal then don’t be afraid to branch out!

Dreams

Now, I can honestly tell you I never expected to be reminded of my ostomy in my dreams, but it happens all the time. My dreams aren’t specifically about my ostomy, but I’ll be plodding along in dreamworld, look down, and there it is! A few theories come to mind about why this happens, but I think that it boils down to identity. When I was an ostomate, I was pretty open about sharing my ostomy with anybody who was interested. I think that this ownership made being an ostomate a core part of my identity, and now my brain still conjures the ostomate version of me in my dreams! 

Takeaways

Depending on your experience as an ostomate, reminders of your time with an ostomy could produce a variety of different emotional responses. I believe it is especially important if you had a poor experience with your ostomy to be prepared for possible reminders of that time. This will allow you to develop a plan to deal with those feelings, and even discuss solutions with a mental health professional. For others who had a better experience with their ostomy, reminders can be a fantastic opportunity to reflect on the growth you’ve made since your time with an ostomy. In either case, I hope you’ve been able to learn a bit about the different ways you might be reminded of your ostomy long after it has been reversed.

Book Recommendation: Exile and Pride: Disability, Queerness, and Liberation by Eli Clare

As I continue my journey navigating the ever-expansive world of chronic illness, I often find that I am always eager to learn more. I feel that increasing the amount of media and literature surrounding disability and chronic illness helps me understand more about myself and my personal journey. While on my search for sociological literature related to chronic illness, I stumbled across an exciting book recommendation, Exile and Pride: Disability, Queerness, and Liberation by Eli Clare. Upon getting this recommendation, I was so excited to delve into this subject matter since I have never been exposed to a book that so openly discussed disability and its intersection with many other identities.

 To put it simply, Exile and Pride is a discussion of disability politics. Writing from a place of experience, Eli engages in a vast number of topics ranging from a lack of visibility to radical queer theory. Eli forces you to question your overall sense of self (in the best way possible) and tries to expand your understanding of what it's like to live with multiple intersecting identities. Grappling with the chronically ill portion of my identity has been an interesting and challenging process; this book gave me the space to self-reflect and better understand not only the different levels of my experience with chronic illness, but my perspective of the overall world in which we navigate.

“I often feel like an impostor as I write about disability, feel that I’m not disabled enough, not grounded deeply enough in the disability community, to put these words on paper.”

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Here are some of my favorite quotes from the book: 

“The non-disabled world is saturated with stories: stories about disabled people who engage in activities as grand as walking 2,500 miles or as mundane as learning to drive. They focus on disabled people “overcoming” our disabilities. They reinforce the superiority of the nondisabled body and mind. They turn individual disabled people, who are simply leading their lives, into symbols of inspiration.”

“Laugh and cry and tell stories. Sad stories about bodies stolen, bodies no longer here. Enraging stories about the false images, devastating lies, untold violence. Bold, brash stories about us reclaiming our bodies and changing the world.”

“I often feel like an impostor as I write about disability, feel that I’m not disabled enough, not grounded deeply enough in the disability community, to put these words on paper.”

“The body as a home, but only if it is understood that bodies are never singular, but rather haunted, strengthened, underscored by countless other bodies. The body as a home, but only if it is understood that place and community and culture burrow deep into our bones. The body as a home, but only if it is understood that language, too, lives under the skin. The body as a home, but only if it is understood that bodies can be stolen, fed lies and poison, torn away from us. The body as a home, but only if it is understood that the stolen body can be reclaimed.”

There are countless quotes in the book that are salient to the chronic illness experience. I feel like inadequacy, infantilization, and many other concepts mentioned are felt throughout much of the community. Living with ulcerative colitis is like wandering through a maze, the path will never be clear, but some parts of the journey will be less confusing than others. This book reinforced this idea. We often don't have the luxury or privilege to have access to literature specifically for our community, especially intersectional literature. If you’re looking to understand more about body identity, disability history, personal experiences, oppression, power, and liberation with a few laughs along the way, I highly recommend this book!

This article is sponsored by Connecting to Cure.

Connecting to Cure Crohn’s and Colitis is a grassroots, volunteer organization that brings together the IBD community with a focus on caregivers and families. Connecting to Cure Crohn’s & Colitis provides community and support for those coping with these chronic illnesses, while raising awareness and funds for research as well.

Healing Looks Different for Everyone

This article is by Nathalie Garcia from the United States.

Photo by Spencer Selover from Pexels.

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It feels so strange to think just a couple of years ago, I was just a confused kid who didn’t understand their diagnosis or where it would have led me. I’ve had a lot of time to reflect on how far I’ve come in terms of healing.

I feel like something that isn’t talked about a lot is how differently we all heal. I wish I could say I navigated my chronic illness with patience and grace but it just wouldn’t be true.

Some of us heal in multiple stages, take a step backward, maybe skip a few steps forward or go in circles for some time. Somehow, I feel as though there is an expectation for those of us who are disabled to be a vision of a warrior that people without disabilities have created.

Even hearing the word healing, I picture softness, warmth, and calm. As soon as I reflect on it, I see something completely different; I see isolation, cold concrete and stiffness. To have an invisible disability is an entirely different kind of isolation I have ever felt in my life. It’s like people can see me but their eyes just pass through me.

Healing a struggle people can’t see can make you bitter. Angry. Angry at the world. Angry at yourself. Sometimes healing turns into a never ending cycle of anger and guilt for feeling so much hatred for a world who can’t possibly understand you when they cannot even see you.

At one point, healing turned into a lot of reflection and self-forgiveness. It’s strange because somehow having a warmer perspective on what disability was like for me shocked others. How can you be happy after that? I couldn’t live like that. I still don’t know how to feel about some of these words. The more I think about them, the more I realize just how hurtful they are.

Because somehow, no matter what perspective I had of my disability, I could never satisfy anyone. And that was okay.

Recognizing that maybe others were just healing differently or at different stages of healing was so incredibly comforting. It made me realize I was angry once too and that I can’t possibly know if I’m seeing right through others like they saw through me.

Healing…

Because somehow, no matter what perspective I had of my disability, I could never satisfy anyone. And that was okay.

This article is sponsored by Lyfebulb.

Lyfebulb is a patient empowerment platform, which centers around improving the lives of those impacted by chronic disease.

Experiencing Change with IBD

This article is by Savannah Snyder from Canada.

Photo by Nothing Ahead from Pexels.

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My life has been changing so insanely fast – from moving out of my childhood home to school three hours away, from living with six other people to now living alone, to a new city, apartment, school, and friends. Change can be amazing – pursuing your goals, growing as a person, and finding your place in this world. But, with change, also brings feelings of anxiety, nervousness, and stress. Change and stress often wreak havoc on my body and cause my Crohn’s Disease to make noticeable little flare-ups. With change comes unknowns, and as a very organized person, this causes my mind to wander. I try to remind myself that everything happens for a reason, and if I enter this new experience with a good and hopeful attitude, I’ll have a great experience.

I moved several weeks ago and am remembering how important self-care is to ensure my body feels safe, calm, and happy. These past few weeks, I’ve noticed my stomach pains starting to increase along with feelings of fatigue and nausea. Whenever I notice negative changes with my stomach, my stress skyrockets and I become petrified that a flare will take over my life. Although I do have an upcoming doctor’s appointment to address these issues, I am focusing on caring for my body with self-care measures in the meantime. To ensure I protect my stomach at all costs and continue to nourish my body, I am treating it with insane kindness in thanks for carrying me around each day and allowing me to live a life with so much love and happiness.

Today, I’ll share some self-care tips that I have undertaken while experiencing change.

Self-Care Tips

Sleep 8+ hours

A refreshing and long sleep helps my body feel so much better. I always try to get a long sleep in once a week!

Nourishing Foods

Eat foods that help you feel your best, this differs for everyone, but I always make sure to focus on eating enough of the foods I know best settle with my sensitive stomach!

Friends and Family

Making time for talking to friends and family is so important. No matter how busy you are, having an outlet is so important. Whether that be venting, doing activities together, or just hanging out.

Journaling

Whenever I’m undergoing change, I love to pour out all my thoughts onto paper. This helps me clear my head and feel refreshed. Although I procrastinate journaling beforehand, I love how I feel afterwards.

Activities

What makes you feel good? Getting your nails done, putting on a face mask, going for a walk, or doing some yoga, whatever activity you enjoy and feel relaxed doing, do it! These activities normally switch up for me and I try to be intuitive with how my mind and body are feeling. Whether that be sometimes going for a walk or doing a yoga flow and others I’m throwing on a movie and laying on the couch in my sweats!

“To ensure I protect my stomach at all costs and continue to nourish my body, I am treating it with insane kindness in thanks for carrying me around each day and allowing me to live a life with so much love and happiness.”

Negative Body Image

This article was written by Saravanan Nagappan from Malaysia.

Photo by Ismael Sanchez from Pexels.

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Choose to do nice things for yourself.

Care about yourself and your happiness.

Don’t let anyone judge and give unsolicited advice on how your body should be.

Surround yourself with happy things.

Believe in yourself.

Start to build your confidence.

Have you ever thought your nose looks a bit wider than it should be or felt your body could afford to gain some weight or simply thought you don’t like the shape of your toes? If you do, then you might have issues with your body image. Most people have issues with their body image and it is also true for IBD patients.

What is body image, you may ask. Body image is the way we feel, think or perceive our own body. It could be a positive or negative body image and it involves one’s weight, shape, and even individual body parts. Most often, IBD patients similar to many other people face negative body image issues. IBD, as you all know, is a life-altering diagnosis. Whoever suffers from IBD, goes through the changes in their body. They might lose weight, suffer from fatigue, experience hair loss and may even have to live with surgical scars for the rest of their life. These could create a sense of loss and dissatisfaction with one’s “new” body. Negative body image also affects your self-esteem, changes your view of a happy life, create conflicts and may lead you into a depression. Having a negative body image is detrimental to us and we need to know why it may happen and how to break out from this negative cycle.

First and foremost, a reason for negative body image is having high expectations. Although, there’s nothing innately wrong with setting up high standards for oneself, sometimes it may bring more damage than good to us. In reality, it’s not easy to achieve body perfection especially for those who are sick and are going through physical changes due to their sickness. If you need or must have a standard to feel good about your own body, then set realistic and achievable standards.

As an IBD patient, there are limitations on what your body can do and can’t do. Therefore, acknowledge the limitation and accept yourself as who you are to break out from this negative cycle. Setting up high standards will hurt you whenever you fail to achieve it. Go slow with your expectations and push up those expectations as you achieve your previous targets.

Another cause for negative body image among IBD patients is comparison. Comparing your body before and after IBD or comparing yourself with others will create negative thoughts saying that you are not the best. We often compare our own body parts or features to others who seem to have a better body. This may lead you to look down on yourself and definitely lowers your confidence and self-esteem. To break from this, you need to actively and consciously stop yourself from comparing your body. Whenever you start comparing, you need to stop and remember that it is unnecessary to do any sort of comparison because you are doing what is already best for you and your body. Try to channel the energy that you were going to spend on comparison to focus on your happiness and mental health.

Negative energy around us is another reason for us to have a negative body image. Oftentimes we are surrounded by negative energy, such as, social media, advertisements and people around us. Social media platforms and advertisements often show and idolize perfect bodies with slim features for females and sculpted bodies for males and they even show unmarred flawless skin, ideal face and body shape, healthy looking skin, hair, and etc. This allows the general population to think that perfect bodies are the only way a person should be and they should desire and achieve that perfection. People around us like our friends and relatives sometimes tend to talk about our less desirable appearance and may even give suggestions and unsolicited advice. These situations often discourage and demotivate us from being happy with the way we look. In order to break from this negativity, we should learn to turn negative energies into positive energies. One of the usual ways is to avoid or remove yourself from being in the negative surrounding. Engage with people who are always supportive of our life, encourage when we need it and recognize us as a better person. Actively avoid any kind of media that possibly makes you feel negative about your body. Surround yourself with people and things that make you happy and feel accepted as who you are now.

Self-isolation is one of the reasons you to get negative body image. Isolation processes start to happen to you when you always feel ashamed with your own appearance and slowly try to hide your body from others and like to be alone. In this case, you start to avoid any social events, public places and may avoid to go to work or school. At one point, you may even try to avoid to look at yourself in a mirror.

To stop yourself from isolation you should brave to see yourself as a whole person and avoid not to focus on specific body parts. Don’t think about what people will think about your appearances, because there is no prefect human being in this world. Appreciate what your body looks like and try to accomplish yourself by celebrating it. Go out see more people and engage with them by talking, singing, dancing, and swimming. This will build your confidence in your body.

To sum up, choose to do nice things for yourself. Care about yourself and your happiness. Don’t let anyone judge and give unsolicited advice on how your body should be. Believe in yourself, start to build your confidence and surround yourself with happy things. This will create positive energy to your life.

“Engage with people who are always supportive of our life, encourage when we need it and recognize us as a better person.”

Overcoming Fear

“I must not fear.

Fear is the mind-killer.

Fear is the little-death that brings total obliteration.

I will face my fear.

I will permit it to pass over me and through me.

And when it has gone past, I will turn the inner eye to see its path.

Where the fear has gone there will be nothing. Only I will remain."

Frank Herbert, Dune

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It is funny how the older we get, the less “scary” the things we fear are. When I was five, I used to be afraid that dinosaurs would march down my street and come eat me and my family. I used to fear the demons in the dark, or the being abducted by strangers. As we grow older, we realize the unlikelihood of these grandiose things we feared as children actually happening. We begin to fear the realistic things we know have hurt us before or that are likely to hurt us in the future. For many of us with Inflammatory Bowel Disease, these fears center on the fear of the unknown. How long will I stay in remission? Is it food poisoning or am I starting to flare? Will my medication be shipped in time for me to take it? Can I live a normal life without my colon?

Sometimes fear comes from the unknown surrounding our medications

These past few years I’ve been afraid of a lot of things because of Crohn’s Disease. I’m afraid to look at the scale in case my weight is dropping. I am afraid to try new foods because I have a lot of food sensitivities. I am afraid of that little sharp pain I occasionally feel in the lower right part of my stomach that might mean my disease isn’t in remission. Fear can be all consuming. It can take a hold of your mind, and suppress any reason or logic that would challenge its grip. 

Fear is an instinct, which means we don’t get to choose how or when it happens. I’ve found that fear likes to act in the background. It takes over our mind when we are so focused on the source of our fear that we forget the fear itself.  The first step to overcoming fear is facing it. We have to identify and acknowledge that we are afraid. 

Once we understand that we are afraid, we must then ask: Why? It is much more than just identifying the source of fear. It is easy for me to say: “I am afraid because the last time I ate pizza I had stomach cramps” and stop there. If I continue to dig deeper, I can come up with thoughts like: 

“Am I 100% sure it was the pizza and not something else?” 

“Was the last time I had pizza when I was in a flare?”

“Am I in a better position now where things might be different?” 

“Did I get a lot of crazy toppings last time? Maybe I can try something simpler.”

“Am I willing to take the risk that pizza gives me cramps again”

Now, instead of fear, there is an informed dialog going on about the situation. It is no longer an emotional reaction, but an analysis of an event. I know the source of my fear, I understand the context, and I can make an informed decision moving forward. Fear may control the “how” or the “when”, but if we take a step back and try to understand the “why” behind our fears, we can overcome.

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I want to circle back to the point I made earlier that a lot of the fear in Inflammatory Bowel Disease is of the unknown. There are two ways to learn something, you either do it yourself or somebody else teaches you. These are lived experiences and learned experiences. 

One of the best ways to conquer the fear of the unknown is to learn from other people’s experiences. CCYAN consists of young adults who are overflowing with experience when it comes to living with IBD. If you are afraid of how your life will look after an ostomy, talk to a current ostomate. If you are afraid of switching medications, talk to somebody who has run the gauntlet of medications. If you are afraid you are entering a flare, talk to somebody who just got out of one. 

It is so easy to feel isolated with IBD, and sometimes it feels like nobody else understands your fears. That is why it is so important to plug into groups like CCYAN and connect with people who can empathize and relate to the challenges and fears we face. You are not alone, somebody understands what you are going through. If we can identify our fears, understand the why behind them, and then connect to people who can remove the “unknown” factor, IBD can be a little less scary.

Thoughts about starting a new medicine

This article is by Vasiliki Rafaela Vakouftsi from Greece.

“How is your new medicine going?”

“It still needs time..”

Photo by Miguel Á. Padriñán from Pexels.

Starting a new drug is difficult, especially when you are trying to control a difficult disease. There is so much behind starting a drug that most people cannot think of.

First, it is scary. You hope this medicine does not interact with any of the other medicines you take - and they are a lot of medicines.

The following are the side effects. In other words, you are nervous to see if this new medicine will make you dizzy, drowsy, nauseous, etc. And, of course, there is always the possibility of more serious side effects.

Another problem is the possibility that the new medicine will not work. That’s the most difficult.

The adjustment period lasts some time before I start experiencing the benefits. It is a long way to go until things get better, where I have to remind myself that it is worth it and it will pass.

Adapting to a new medicine is difficult, but chronic illness is also difficult.

Medicines. My best friend and worst enemy. A love-hate relationship. I do not want to live with them, but I probably would not live without them.

Now for those who question western medicine and believe that all this is unnecessary and all I need are essential oils and yoga, I will stop you. I feel very lucky to have a very good medical team and a treatment plan.

Fingers crossed for my new medicine to work and for me to get a better quality of life…

Major Life Transitions: IBD and Starting Graduate School

As a young adult who lives with IBD, feeling safe and secure is almost as necessary as breathing air. Navigating the endlessly winding path of chronic illness has caused me to be more aware of my environment and how it affects me. Through this, I have come to find solace in my environment. After getting accustomed to this sense of safety, I finally found comfort. But, what happens when that sense of comfort and stability is challenged?

Recently, I just moved 500 miles away from home to attend grad school. This was probably one of the most impactful decisions I’ve ever had the privilege of making. While the process of moving for grad school is difficult for everyone, I want to emphasize the added barriers that chronically ill people face. After I received my acceptance letter from the University of Pittsburgh, I was overcome with joy. Finally seeing the fruits of my hard work, determination, and labor was extremely validating. Shortly after this period of elation, I immediately became overwhelmed with intrusive thoughts such as “Well, can I really move away from home with ulcerative colitis?”, “What happens if I flare again?”, “I don’t want to leave my doctor.” I tried to give myself space to feel my emotions, but it was still difficult. Ultimately, the decision to move was clouded by, what I like to call, health hesitation.

Not only did I have to deal with the social pressure of applying to grad school, I also had to cope with the idea of being away from my established support system. I’ve worked so hard to build meaningful relationships with my medical team, so how on earth would I manage to completely restart? Something that I found beneficial was being open and communicative with my doctors throughout the entirety of the grad school process. My GI doctor knew the second I was accepted, she knew when I took my first flight to visit campus, and she knew about every important date leading up to my departure. Being transparent allowed her to assist me with navigating insurance, finding new doctors, and recommendations. This significantly helped with my transition and it helped relieve some of my health related anxiety. For myself, stress and anxiety are triggers for my symptoms, so mitigation is salient. This emphasizes the importance of advocating for yourself and being open and honest with your doctor(s).

An important tip I would give someone moving for grad school is to be proactive about setting up doctors appointments before you move. Prior to moving, I made sure that I had the basics down, like dentist and eye doctor visits. Getting the lower priority appointments out of the way definitely eased some of my anxiety. This also extends to being proactive about finding doctors once you arrive. The process is very overwhelming, but I found that taking these steps helped mitigate some of that stress and anxiety. A second tip I would give is to check to see if the school you're attending has an on-campus pharmacy. I, like many others, have quite a few necessary medications and transferring to a new pharmacy can be a bit of an undertaking, especially when it’s out of state. For example, The University of Pittsburgh has an on campus pharmacy that takes care of insurance and the medication transfer process in a quick and efficient manner. Never hesitate to seek out local resources, especially through your campus disability resources center.

In summation, no one experience is going to be universal. We will all experience our own set of unique trials, anxieties, and stressors. With that being said, moving for grad school is a decision I will never regret. If I ever feel like second guessing myself or I get discouraged about having to restart everything, I always like to remember that this experience is an investment for my future, both professionally and personally. Always be vocal and advocate for yourself, especially when seeing new providers, give yourself space, try to quiet that health hesitancy, and enjoy your experience. If I can do it, anyone with IBD can do it. We are all capable of withstanding hardship!

This article is sponsored by Connecting to Cure.

Connecting to Cure Crohn’s and Colitis is a grassroots, volunteer organization that brings together the IBD community with a focus on caregivers and families. Connecting to Cure Crohn’s & Colitis provides community and support for those coping with these chronic illnesses, while raising awareness and funds for research as well.

LEARN MORE ABOUT CONNECTING TO CURE

Little Wins: Things that Keep you Going

This article is by Nandani Bhanot from India.

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To be very honest, a little over a year ago, I had little to no idea about the presence of chronic illness patient-led advocacy efforts around the world. It is a real pity because as I look back, it would have helped me navigate many of my IBD experiences better. I would have been armed with more information to vouch for my safety, comfort and rights. However, I am glad I started now rather than later, and I look at the many things I have learned thanks to the Crohn’s and Colitis Young Adults Network (CCYAN) with great satisfaction. Yet, patient-led advocacy is harder than it seems, especially in the South Asian context. 

When I was first diagnosed with IBD, I was at a stage in my life where taking up space felt complicated and wrong. So at moments where my illness conflicted with social plans, I would push my needs away rather violently in favor of not making other people uncomfortable or having to explain my uncertain situation. Sometimes, when I ignored my needs too often, I would bitterly burst open – they were highly volatile moments of trying to advocate with very little information. It was akin to a baby taking its first steps and learning how to walk on shaky ground. The feedback during these first years was overwhelmingly negative, with people underestimating the severity of my illness, disbelieving my experiences and ignoring my needs. I admit, the advocacy was ungraceful and thus perhaps, I received unfavorable feedback. Cut to now, I am still learning how to best advocate for myself, people with IBD, and the larger chronic illness community. Now, I’m starting to receive positive feedback. 

Being vulnerable requires immense courage in the South Asian community. The society thrives on critiquing and scrutinizing everything that is a part of it, and with very rigid definitions of what success is and what the many shortcomings are, to put yourself right in the middle of it all is a courageous task. I started actively and unabashedly talking about my illness only after I joined CCYAN this past year. I did not expect to impact the social circles around me, even though part of my goal was to reach out to someone like me in the past and help with information and support. Unfortunately, every time I posted something, I was simultaneously fighting internalized shame from the vulnerability of allowing it to be shared. The society can make you feel like you are exaggerating your experiences, asking for attention, and can even make you question your own reality. Fighting your immune system, the ableist world system, people’s misunderstanding of your disability and your own thoughts can be exhausting and can make one feel demotivated easily and frequently. With basic rights not covered for the majority of the Indian population, raising awareness for invisible disabilities can seem completely pointless rather quickly, and like your efforts aren’t making a difference. But this is not true. 

Ever since I embraced advocacy wholeheartedly, multiple people have approached me to say their thanks in helping them understand the chronically ill in their personal circles, or in helping them understand their own symptoms. Connections have been made where otherwise we would have remained strangers, and strong support systems have been established where before, people may have felt extremely alone in their struggles. And while there is no lack of unsolicited opinions and unhelpful feedback, the weight of the positive interactions is not to be underestimated. They make the whole thing worth it. Even if the posts impact one person positively, especially in knowing they are not alone, it can make a world of a difference. For instance, think back to when you felt alone with a certain aspect of your illness/significant life event. Coming across something that resonated with the most vulnerable part of you must have had an extreme impact. In my case, when an adult had opened up about navigating a life with ulcerative colitis, it changed my life. I’d previously thought that being diagnosed with IBD meant my life had basically ended. With all the restrictions and future health risks, this person showed me life could go on, just differently than we imagined. So in these moments, when I realize someone is actually impacted by what I’ve posted, that is what keeps me going.

Starting a New Treatment: My Experience with Humira and Stelara

This article is by Jennifer Lee from the United States.

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Here’s a picture of me before my treatment! A bit nervous, but hanging in there.

This past week, I received my very first dose of Stelara, my latest biologics treatment, at Mount Sinai in New York City! Unfortunately, even after a year on Humira subcutaneous injections, my Crohn’s symptoms have not subsided as we had originally hoped. After having seton drain placement done back in December 2020, along with another operation in June 2021, my healthcare team at Mount Sinai’s IBD Center decided that it may be best to try a new method of attack with a new set of biologics treatment.

Before starting the treatment, I had multiple healthcare workers stop by my room to explain what exactly Stelara was. I’m grateful that my mom was there to be by my side during this transition, but I also know what a blessing this is. When I was first diagnosed back in June 2020, I was completely alone in the hospital while COVID-19 infection and hospitalization rates were through the roof. The simple comfort of being surrounded by a loved one went a long way. 

Here’s me while receiving my first dose of Stelara intravenously! The next dose will be done via injection, hopefully on my college campus.

While I originally had a bit of trouble breathing in the first few minutes, my nurses assured me that this was not an allergic reaction to Stelara and that I was reacting well to the medication. It only took about an hour for the entire round of Stelara to be infused, but I did wait an additional 30 minutes to ensure that I would not experience any additional side effects. Truth be told, I was surprised at how efficient and fast-paced the entire infusion center at Mount Sinai was; I felt completely safe and well taken care of in their midst. Shoutout to the tireless effort of the amazing healthcare workers at Mount Sinai!

The day immediately after my first dosage of Stelara, my chronic fatigue kicked in, leaving me completely knocked out the morning after. Even after a year of living with Crohn’s disease, I’m still surprised by the ways that chronic fatigue manifests in my life. Although self-care admittedly goes a long way in understanding my body’s signals, I was most definitely caught off guard by how exhausted I was after the first dosage. 

Moving forward, it’s a bit terrifying knowing that my treatment plan may or may not work. However, I feel so grateful to have access to doctors that specialize in IBD care and surgery; all IBD patients deserve access to the most effective treatments for their specific condition. My first dose of Stelara was a reminder of not only how fortunate I was to have a second chance at a biologics treatment, but also of how much more work needs to be done to ensure that healthcare becomes equitable for all.

Tips to Improve Your Quality of Life with a Stoma

This article is by Saravanan Nagappan from Malaysia.

Photo by George Becker from Pexels

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Many of my ostomy friends confided that their life has changed since they became an ostomate. They feel their quality of life has deteriorated after having a stoma. They are unable to enjoy their life as before they became an ostomate. They mention changes to their diet, workout, and their social activities not remaining the same as before. Yes, I have to agree with them, because what they say is a common fact for an ostomate to experience and I personally faced the same issue as well even a decade being an ostomate, still my life is not the same as before. I’m going to share with you a few tips on how I have managed to reduce the impact a stoma has on quality of life based on my experiences.

Accepting your new life as an ostomate

The first tip is acceptance. We need to accept that we are ostomates and prepare for it both mentally and physically. At the end of 2011, my surgeon approached me and suggested that I have to go for Ostomy surgery as it was the best way to heal my fistula. My surgeon informed me regarding the complications I would be facing. At that time, I was confused and worried. I took a few days to decide whether I want to do it or not. The decisions involved many considerations, especially the changes in my life that come from being an ostomate and living my entire life as one afterward. After a long discussion with my family, I finally agreed to go for the surgery. I psyched myself up mentally by listing the benefits of this surgery and the changes it would bring to my life especially the physical ones. Since I accepted my situation and geared up for it, post-surgery changes were not monumental. My goal at that point in my life was to heal my fistula and get my Crohn’s under control. It was more than enough for me.

Adapting to new norms

The next piece of advice is adapting to new norms. This is important for an ostomate because a new ostomate is like a newborn. We are reborn into a new physical self and the changes it brings to our routine are something we have to relearn all over again. Without a choice, we have to adjust to new norms. Common new norms are our diet, daily routine, and social activities. It’s impossible to change everything overnight, but focus on small changes in our daily life and we will be able to see the impact in the long term. Once we learn how to slowly accept and adapt to our new norms, we will find it easier to live our life as an ostomate. The problem occurs when we refuse to accept new changes or routines. Inability to accept the changes can lead to deterioration of life quality.

Pre-planning your days

The following tip is to pre-plan. Pre-planning everything you want to do is one of the ways to improve an ostomate’s quality of life. Pre-planning a daily routine or outing is common in anyone’s life. However, it could be an essential habit for an ostomate. For example, assume that you need to attend an event in a few days’ time. In order to attend this event, you need to pre-plan your diet so you can avoid any food that can cause gases. By doing this you may avoid visiting the washroom all the time in front of others and enjoy the event more. Not only diet, but you can also pre-plan for other matters such as your physical and emotional wellbeing as well. Remember pre-planning can help to prevent any last-minute mishaps or emergency withdrawal from a situation.

Physical exercise for a better quality of life

As a final tip, I personally suggest that ostomates perform some physical exercises. After my surgery, I thought that my workout routine had come to an end. However, my thoughts had changed after I met a few senior ostomates. They advised me to not abandon my workout and they guided and motivated me on how ostomates should do their workouts. I started again with basic workout routines and challenged myself to go for the harder level. So how do workouts improve our quality of life? Doing physical exercises help to build our body muscles, reduce unwanted fats, keep our body fit and flexible and also improve our blood circulation and digestive systems. Moreover, workouts help to remove toxins from our bodies. which will keep our bodies healthier. Exercises also help to keep our minds active and create more positive energy within us. All these could tremendously improve ostomates’ quality of life.

In a nutshell, ostomy surgery is a life-saving procedure for many patients. Therefore, it should not be treated as a burden. Rather, we must take our own individualized care and explore new choices to improve the quality of life after ostomy surgery. I hope these tips can help you in your ostomy journey.

Let’s control our quality of life, it is in our hands!

"But You Don't Look Sick" - A Photo Journal

By Vasiliki-Rafaela Vakouftsi from Greece.

“But you don’t look sick”. How many times I have heard this? Maybe I don’t look sick to you but I am sick and my daily life is far from what you may think. 

I tried to captures in pictures my daily routine as a chronic patient and I’m going to share them with you. 

First of all, let me tell you some things about me. My name is Vasiliki-Rafaela, I’m a musician and I have Crohn’s Disease, Adrenal Insufficiency, Psoriasis and Psoriatic Arthritis. I have written a book about my journey with Crohn’s and a book about my life with Adrenal Insufficiency. Also, I really like traveling and I really miss it with the pandemic. 

Now let’s start with the hospital visits…

...the hospital stays and therapies…

...the hospital stays and therapies…

...take the pills, medicines and supplements…

...and maybe today is the day of the week for the injection for Crohn’s…

...or maybe I need the emergency shot for Adrenal Insufficiency…

And now it’s time for a walk.. Don’t forget to carry the pills with me...

...and of course my medical ID…

Back at home again.. Really exhausted...Let’s check the e-mails and read a book before going to sleep

That’s a little idea of how my daily life is. But, you’re right. So before saying “You don’t look sick” think of what is behind the image and what you cannot see…

What I Eat in a Day

TW: mention of eating disorders & disordered eating

I really didn’t want to write this article. I am pretty open about how I have a lot of dietary restrictions. When I go out to eat with friends, I usually tell them that I follow a strict diet for my Crohn’s Disease. Then they’ll ask if I can have anything on the menu, and I will say No. The inevitable next question is always: So, what can you eat? I’ll list off a few foods like oats, bananas, blueberries, broccoli, chicken, and buckwheat, and that's usually the end of that conversation. I’ve had it so many times; honestly pretty much any time I meet somebody new.

I tend to think that when I give people that list that they just assume I stop listing things because it would get excessive if I named every food I could eat. I imagine that they might think I am going through a typical day, and maybe other days look different than the short food record I have given. I don’t think that anybody really considers what it feels like to eat the same 5-10 foods over and over and over and over again. But I do. I do because that has been my life since January of 2019 when I entered “remission”.

Remission for me has always been rocky. I noticed really quickly that while I felt better overall (you know, my body wasn’t trying to set records for lowest hemoglobin and highest CRP simultaneously), I still had some symptoms. I decided to take the advice I give a lot of my IBD patients these days and start a food journal to try to find my trigger foods. Slowly I started feeling better as I cut back on the foods that I noticed were giving me hives, acne, bowel cramps, diarrhea, and a whole host of other symptoms. 

So I got to a baseline diet with some foods I knew I felt good on and did that for a bit. It was wonderful, as long as I ate these foods, I felt pretty much “normal” and could do all the activities I wanted. But I wanted to find more things I could eat, so I started to do food reintroduction. I would try a new food for one meal and see how I felt afterwards. If I felt worse, I knew that food wasn’t a good fit and I’d mark it as a trigger food.

Fast forward to 2+ years of trying a new food every weekend and you’d expect my diet to be all normal and varied with only a few restrictions. Haha I wish. I’m pretty sure after all this time it has gotten worse. I guess the problem really is that my body thinks pretty much everything other humans call edible is unfit for consumption, and it lets me know that loud and clear.

That all is the much needed background to my current diet. I guess I should share what it looks like at some point as that is the main reason I wrote this article, so here goes:

Breakfast

• 3 cups of cooked rolled oats with ½ sliced banana and ½ cup blueberries.

• 1 Orgain Nutritional Shake

Snack

• 1 Orgain Nutritional Shake

Lunch

• 2 cups of cooked buckwheat, ½ sliced banana, and ½ cup blueberries

• 1 Orgain Nutritional Shake

Dinner

• 2 cups of cooked buckwheat, 1 ½ cups cooked broccoli, ½ a cooked chicken breast.

So…..yeah. I’ve pretty much been eating that or some slight variation (I used to eat a lot of plantains too) day in and day out for a few years now. Pretty messed up right? I am pretty sure from the outside this looks like at least disordered eating if not a full blown eating disorder. But, like, what am I supposed to do? It's not like I am not trying to expand my diet, I just can’t without Crohn's kicking my butt. Also I promise I’ve told every GI doc I’ve had about this and unfortunately there hasn’t been anything they have been able to do to help.

I decided to write this article because during the few years I’ve had these issues with all these trigger foods I’ve never really found anything online that mirrors what has happened to me. My hope is that if there are more people with IBD out there who struggle with these food issues as much as I do, that you at least feel validated that you aren’t the only one going through this. It sucks, and maybe one day we will have an answer as to why it happens. 

Until then, if you are having issues with foods triggering your disease, bring it up to your doctor or dietitian. Spread the word. Even if, like in my case, the doctors or dietitian isn’t able to fix the problem, at least we are fostering awareness and discussions that will bring about solutions in the future.

Digestive Disease Week: Impact of COVID-19 on GI Patients and Practices

The Impact of COVID-19 on GI Patients and Practices was an eye opening session that shed light on the effects the coronavirus has on GI patients. Adam VanDeusen shared his study covering how crucial colonoscopies and endoscopies are in the management and diagnosis of inflammatory bowel disease, among many other illnesses and cancers, an area that is being profoundly affected by the COVID-19 pandemic. Timely diagnostic and management procedures, such as colonoscopies, are critical to ensure that patients receive the treatment they deserve in a quick and timely manner, whether that be an IBD diagnosis, management of IBD including a switch in medication, screening for anemonas and colorectal cancer. I’m sure many of you reading this with inflammatory bowel disease or other digestive diseases can relate to how the pandemic has hindered your healthcare and treatment. This reiterates why studying how to decrease backlogs and improve patient care in a critical part of every digestive illness, including colonoscopies and endoscopies, are so important. 

VanDeusen discussed the reality of COVID-19 and its detrimental effect on colonoscopies needed for patients. The COVID-19 pandemic has caused a high number of cancelled or deferred endoscopies and colonoscopies since March 2020 due to health system policies, staff and facility re-deployment, and distancing measures. For my fellow IBD readers, I’m sure this doesn’t come as a surprise to you. Across the world, many colonoscopies and endoscopies were delayed or cancelled, causing stress, chaotic management of treatment, and prolonged diagnoses. In addition to IBD, colonoscopies to detect colorectal cancer, a type of cancer that can be prevented and treated when undergoing timely diagnostic colonoscopies, have been backlogged and delayed. VanDeusen dives into simulation predictors that forecast solutions to reduce the backlog and wait times patients are experiencing to ensure diagnostic treatments via colonoscopies and endoscopies are available for patients. As an alternative to colonoscopies, many gastroenterologists have been using a high-sensitivity stool-based test (FIT) as a way to detect colorectal cancer to prolong screening wait time from five to seven years if the results come back negative. 

Benefits of high-sensitivity stool-based testing: 

• Alternative to colonoscopies to detect colorectal cancer 

• Lessens wait times 

• Extend time between colonoscopy screening 

The three strategies in the simulation are Overtime, Exchange, and Extend. Through Exchange, GI clinics utilized the stool-based tests as an alternative to colonoscopies for patients that were referred strictly for colorectal cancer screening. Stool-based testing resulted in reducing the wait times for patients undergoing colonoscopy screening referrals as well as allowing quicker wait times for patients with no alternative diagnostic treatments. The second strategy, Extend, extended screening colonoscopies for patients with 1-2 adenomas on previous colonoscopy exams from five to seven years. Lastly, the Overtime strategy added one weekend endoscopy day to result in quickly seeing more patients for endoscopies and colonoscopies. 

VanDeusen highlights that the study aimed to quantify the impact of evidence-based strategies to improve endoscopy access during the COVID-19 pandemic. The method created a model of a single endoscopy unit with an integrated healthcare system using a discrete event simulation in C++. The model began in March 2020 for 150 weeks and each simulation was replicated 100 times to ensure accuracy. To simplify the model used, when a patient arrives to book a colonoscopy and that patient is unable to secure a scheduled appointment, that patient is then put into the queue. This study looked at four different simulations to provide the best approaches for GI clinics to achieve the lowest wait time, Extend, Exchange, Overtime, and a combination. 

VanDeusen explains that the study shows that triaging patients effectively will result in performing more diagnostic and high-risk surveillance procedures in a timely fashion. Without offloading strategies, prolonged queues and wait times develop, especially for screening colonoscopies. The Overtime strategy of one weekend endoscopy day increased colonoscopy volume and had the greatest impact on the number of screening procedures completed. The Exchange strategy reduced overall wait times more than Extend and Overtime. Combining strategies is the most effective solution, especially given the fact that doctors and healthcare staff have been continuously overworked during the pandemic. 

Takeaways: 

• Effective triage will reduce colonoscopy backlog and queues 

• Doctors working overtime is the single best strategy to reduce colonoscopy wait times 

• Combining strategies will best reduce colonoscopy wait times and allow more patients to be seen in a timely fashion  

This study was extremely important and was desperately needed to provide a solution to reduce wait times experienced in gastroenterology clinics across the world. The importance of this study is paramount and must be recognized and implemented by GI clinics and doctors to reduce wait times and improve treatment for patients for not only colorectal screening and diagnosis, but also for all patients with digestive diseases, including IBD. For those patients whose treatment has been affected by the pandemic, including me, this provides great hope and comfort that medical treatment can return back to normal and can withstand future uncertainties. 

Growing Pains: IBD Lessons Learned from the COVID-19 Pandemic

In March 2020, the COVID-19 pandemic turned the world upside-down as we knew it -- that, in and of itself, is already the understatement of the year. Disability activist Alice Wong spoke of how the nation’s need for ventilators in hospitals directly conflicted with her needs as a disabled patient; Tiffany Yu, founder of Diversability, used her platform to raise awareness of transparent masks for easy lipreading access. Already, at-risk patients suffered from a lack of attention and space, only for this to be exacerbated by a public health crisis. 

However, the pandemic also offered a chance for those with disabilities, and specifically IBD, to rethink our routines and lives. For example, in my own experience with Crohn’s disease, I’ve found that staying at home during the school semester had me re-thinking all my prior decisions in my relationship with food. It was, in fact, possible to regulate my diet and work in my medications without compromising my education -- the flexibility of virtual classes in university had opened up a new way of life for myself, one where I could sneak off to the bathroom during lecture without worrying about missing key points or bumping into desks. 

Living with Crohn’s, it often feels as though my time is not my own. This phenomenon of constantly running on other people’s schedules is not exactly unique to Crohn’s or IBD as a whole -- in fact, it refers to a concept known as ‘crip time,’ in which society and its timetables ought to bend to meet the needs of disabled bodies and minds. It’s a community-inspired term that essentially encourages us all to work on our own time, taking up space as necessary to meet our individual body and mind’s requisites. 

Whether it’s knowing where the nearest bathroom is, or having accommodations to turn the Zoom camera off, accessibility is an essential cornerstone of working with IBD. As a college student, I’ve found that communication with professors and administrators has become easier in a virtual setting, allowing for flexible office hours and minimal commute to buildings. In all workplaces, key lessons should be taken and continuously applied from the pandemic, particularly in regards to accessibility for disabled folks. 

With this being said, a major caveat is that we as a society are almost always ‘plugged in’ or online -- being available on Zoom has made it near impossible to draw the (much-needed) line between home and the office, allowing professionals to work around the clock. As the world shifts back to a new state of burgeoning normalcy, may we all remember the importance of accommodating disabled folks in the workplace, in-person and virtually. 

For those with IBD or any chronic illness, it is of the utmost importance that we too learn where to place boundaries in our work lives, prioritizing our physical and mental health above all. 

Diversity in IBD: Being Disabled and Asian American

Almost exactly one year ago, I was diagnosed with Crohn’s disease after a grueling few months of trial-and-error diagnoses by my medical team. Truth be told, the news was a shock to my family, but not for the reasons you may first think of. 

In my mother tongue, there is no widely accepted translation for “Crohn’s disease,” not to mention “Inflammatory Bowel Disease.” In a way, my Asian American identity is one reason why it took so long for me to receive my diagnosis of Crohn’s disease in the first place; my gastroenterologist had not previously thought to test for a condition that was thought to be more common in Caucasians or Ashkenazi Jews. Even amidst official resources from various foundations, it is admittedly difficult to find Asian representation within the IBD community.

As a disabled Korean American woman, I experience IBD through the lens of multiple marginalized identities. At the intersection of ability, ethnicity, and gender lies an incredibly complex set of conversations that society has yet to fully parse out and create space for. 

While chronically ill and disabled folks found themselves facing a morphing status quo that was being overturned by a worldwide pandemic, their fight for accessibility and accommodations was simultaneously accompanied by embroiled racial justice initiatives. The Health Advocacy Summit has written extensively on how racism is a public health crisis, underscoring the need to include all marginalized communities in our activism efforts.

Personally speaking, I came face-to-face with the inevitable intersectionality of advocacy in the fight against anti-Asian hate. In the wake of 2020, the United States began to witness an alarming surge in anti-Asian racism that quickly escalated to violence and hate crimes. As a chronically ill patient, I knew exactly how it felt for an entire community to be marginalized, vulnerable, and at-risk, making it all the more urgent for me and my fellow student leaders to speak up against these acts of hate.

The intersectionality of these two identities is rarely discussed, yet they both mold and inform the other. My diet, my language, and my roots are so intimately tied to my Korean heritage, and in turn, my Asian American identity shapes the way I understand my chronic illness. As Sandy Ho wrote in Alice Wong’s Disability Visibility, “taking up space as a disabled person is always revolutionary,” but especially in the ways in which traditional East Asian attitudes often conflict with the mindset of the evolving American immigrant. 

The same goes for the ways in which Asian culture influences food options for those with IBD. Nandani Bhanot, another 2021 CCYAN Fellow, wrote about how IBD diets and treatments are rarely created with people of color (POC) in mind, alluding to the lack of content on modified diets with traditionally Asian dishes.

Moving forward, I believe that my journey with Crohn’s disease and Asian American advocacy are not unrelated, but in fact, closely tied. Perhaps the best next step our IBD community can take is to create space for disabled POC, uplifting their stories and amplifying their voices.