Social Media’s Influence on Gut Health

By Isabela Hernandez (Florida, USA)

We must be very cautious on what social media tries to sell when promoting these gut healing products.

I can’t be the only one who was succumbed to the influence of “gut tik tok” or Instagram posts claiming that a magic powder from Amazon will cure your gut. I see these posts, still knowing that I need to be trusting professionals over influencers, and a small part of me wonders Is this the cure I’ve been looking for? On days I’m writhing in pain or annoyed about my medications, I truly do think about buying into an influencer's recommendations on how to heal your gut and buy the millions of supplements they promote. Maybe I won’t ever have to take medication again! BUT, we must be very cautious on what social media tries to sell when promoting these gut healing products.

“I see these posts, still knowing that I need to be trusting professionals over influencers, and a small part of me wonders Is this the cure I’ve been looking for?”

On days I’m writhing in pain or annoyed about my medications, I truly do think about buying into an influencer's recommendations on how to heal your gut and buy the millions of supplements they promote.

It’s always disheartening for me to see people who have managed to “cure” their gut with products I’ve never heard of and wonder, is it even true? Most of the time, it is not. But it’s hard for us, those who have suffered with these diseases for a while and will continue to do so, to see these videos and not feel a flicker of hope that maybe our cure lies in the next new gut supplement. I’m not saying all the information on social media related to gut health is bad, some of it is very informational! There are many trained professionals out there who make incredible content based on diseases of the gut. We just need to learn, as a community for people with GI issues, to follow professionals who we trust to give us well-informed advice. It’s important to use social media as a means of getting trustworthy information, not gaining false hope by influencers with promotional content that lacks real evidence. This is definitely something I need to work on as well but I trust we will all be able to find a healthy balance when it comes to social media.

“ It’s important to use social media as a means of getting trustworthy information, not gaining false hope by influencers with promotional content that lacks real evidence. ”

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This article is sponsored by Trellus

Trellus envisions a world where every person with a chronic condition has hope and thrives. Their mission is to elevate the quality and delivery of expert-driven personalized care for people with chronic conditions by fostering resilience, cultivating learning, and connecting all partners in care.

Butterfly Effect: My Journey into Designing for Accessibilty

By Natasha Kacharia from the United States

A butterfly flaps its wings in the Amazonian jungle and a typhoon occurs in Europe. Tiny things, according to Chaos theory, are the things that change the world. I am not sure if this applies to the world around us, but what I know for sure is that a sequence of small events shaped my passion for digital design, specifically in the field of accessibility and healthcare.

Growing up, I designed skating dresses. I absolutely loved employing design and aesthetics to create dresses that expressed who I was, that told stories. However, in addition to my love for design and storytelling, I am also a numbers girl. I crave the certainty that disciplines such as computer science and mathematics provide. My study in Stanford’s Computer Science track in HCI perfectly encapsulates both my interests, as I firmly believe UX Design is another vehicle to tell stories. Utilizing graphic designs, word clouds, flow charts, and data visualizations, I can create consistent and strong messages that resonate with users. In addition to my time at Stanford, I had the opportunity to explore my love for design in the workforce. At Microsoft, I designed and prototyped in-app training content to onboard new employees with MSXI applications, utilizing software such as Figma, Power BI, and WalkMe. At Ford, I designed an interactive quiz for consumers to help them determine if buying or leasing their next vehicle is right for them. Both these experiences solidified my passion for human-computer interaction.

Yet, while I knew I wanted a career in digital product design and I knew I wanted to make a positive impact, I lacked insight on what. It was through an invitation as a fellow to attend the 2021 Lime Connect Symposium – a leadership development program designed for high potential university students who happen to have all types of disabilities – that I realized I was meant to design in healthcare. From the age of 17, when I was diagnosed with the autoimmune disorder ulcerative colitis, I have had an ever-growing interest in the healthcare industry. But since I did not have a desire to pursue medicine, it did not appear to be an industry where I could make a difference. Meanwhile, through my numerous emergency room visits and hospitalizations, I noticed many gaps in the patient experience. For instance, my second week of my freshman year of college, I was rushed to the emergency room for excruciating thigh and knee pain. The medical staff spent an hour asking about my previous medical history and running the same medical tests that I had undergone less than three weeks ago in my hometown’s ER instead of attempting to relieve my pain, as they did not have access to my previous medical records. My experience was not unique; there is not a seamless way for physicians to access past records or for patients to transfer them to new hospital systems. Some other common pain points of my patient experience have been paying complicated hospital bills, coordinating with insurance, communicating my needs to physicians, and obtaining medical help outside of regular business hours; many of these were only exacerbated by the COVID-19 pandemic. Through Lime Connect and then CCYAN, I had the pleasure of meeting other disabled students and professionals who were using their past experiences, knowledge, and talent to affect positive change to make the world a more inclusive and accessible place, making me realize that I wanted to do the same.

Yes, I admit, there are some days that wish I did not have ulcerative colitis, but if I was never sick, then I would not be me. My experiences, the good, the bad, and the ugly, have shaped who I am today. I am not sure where the future will take me, but I am excited to flap my wings and hopefully make the world a more accessible place.

Featured photo by Ash Moore from Pexels

How I Prepared for My Surgery

By Maalvika Bhuvansundar

Hearing the word surgery is enough to give a lot of us nightmares. During my early stages of diagnosis, I was told of a future where surgery might be required, but I never thought such a day would come. Well, looking back at it now, I realize how wrong I was for assuming this. For a lot of us with IBD, surgery might be inevitable. However, there are also a lot of individuals with IBD who might not require surgery and could reach remission with medication and lifestyle changes. It wasn’t the case for me though. After six painful years of being sick, surgery seemed like the most probable solution. Got numerous tests done once again for the 100th time and realized that my intestines were narrowed. The good news was that Remicade was working well for me, and the narrowing was getting better but at a very slow pace! I was given two options, either I could get hemicolectomy surgery done or could rely solely on Remicade which might take longer to ease my symptoms. The following steps helped me make a clear decision:

Make a pros and cons list - having things written out helps make a more objective and rational decision.

• Get all the required tests done and always ASK for a copy of your reports.

• Always get a second opinion! It’s our body and we have every right to get as many second opinions as we’d like. Don’t let anyone tell you otherwise.

• Make a pros and cons list - having things written out helps make a more objective and rational decision.

• Ask your doctor every doubt you have regarding the surgery even if it may seem repetitive or irrelevant. It is better to make a decision with all your doubts and concerns answered.

Luckily for me, my aunt and uncle are both doctors, and they assured me that getting this surgery would be the best decision I took, and they were spot on! There are a few things to keep in mind for post-surgery:

Ensure they have given you the medications required to take at home.

• Always write down the instructions given for home care.

• Ensure they have given you the medications required to take at home.

• Do not leave without the discharge summary!

• There are chances of having constipation post-surgery; it is a pretty common side effect. Ask the doctors what to do if this situation pertains to avoid anxiety and stress regarding this once you are back at home.

• Do not miss your follow-up appointments!

Thanks to this life-changing surgery, for the first time in six years, I am symptom-free, and though I will always have the scar to remind me of the pain, it also reminds me of the decision that helped me lead a better life. This experience showed me that life could take a different turn unexpectedly. However, the scary choices may sometimes be the best ones we’ve ever taken!

When Chronic Illness Causes You to “Quit” A Commitment

By Mara Shapiro (USA)

I go back and forth on the connotation that I associate with the word “quit”. I’ll be honest; I feel like I have “quit” a lot of things over the years due to my chronic illness. While the initial sting of having to quit an extracurricular activity or cancel plans at the last minute is always painful, I have learned some lessons that help me cope with this inevitable chronic illness experience.

First, I want to tell you a story of my most recent experience of “quitting” a commitment. Earlier this summer, when I had just moved back to Virginia, I signed up for an intensive 3-week learn-to-row class. I was looking for an activity that would be social, allow me to be on the water, and help me build back my physical fitness. This rowing class was 2 hours every evening, 4 days a week, for 3 weeks. Due to the nature of rowing and the fact that the boat only rows if it is full of competent rowers, it was very crucial that you attend every practice (or gave the coaches enough notice to find a substitute) or half the group wouldn’t be able to row. This was a situation with as much of a forced commitment as I’ve found myself in since I was diagnosed. Very quickly, this commitment, while fun and empowering, led to a lot of anxiety.

What if I had to go to the bathroom while we were out on the water? Too bad; there’s nowhere to go if you are a mile away from the dock… 

What if I got tired and needed to take a break? Too bad; if you stop rowing in sync with the rest of the boat, you will tip everyone over… 

What would happen if I couldn’t make a practice or two? People would be inconvenienced.

I found some ways to deal with the anxiety of those thoughts by trying to rest before practice and going to the bathroom before practice, but even when I tried to control as much as I could, I realized that a lot of my life because of my Crohn’s disease is unpredictable… and that’s okay! It became an exercise of how much I could accept the unpredictability in order to participate in this activity with my chronic illness; I also had to deal with a great deal of anxiety over the “what ifs”.

Unfortunately, I wasn't able to finish the last week of the class due to a cellulitis infection and then a C. diff flare-up. I was really disappointed and it felt like I was “quitting” at first. However, I realized that even though I technically didn’t finish what I started, I still learned a lot through the experience. 

I am so proud of myself for trying something new and pushing myself out of my comfort zone. Even though it didn’t turn out as I had initially pictured, I still had a lot of fun. The fun I had while rowing is a type of thrill that I haven’t experienced since I stopped rock climbing competitively when I was 16. I had thought chronic illness robbed me of the ability to enjoy a new athletic sport, but this experience proved me wrong.

My advice to you is:

• Don’t let your IBD hold you back from trying new things! Having some fear and apprehension when embarking on a new commitment, whether it’s athletic, social, academic, or professional, is normal, but I encourage you to persevere and step outside of your comfort zone anyway!

• If you have to adjust your commitment once you start, that is totally okay and to be expected when trying something new! Don’t think of this as “quitting” as much as pivoting. 

I’m excited to know what new things you have tried since your diagnosis or what this article has inspired you to try!

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

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.

"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.

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.