Life with Crohn’s: A Visible Person with an Invisible Disability

by Rifa Tusnia Mona (Dhaka, Bangladesh)

Image of a vast, white sky and ground covered in small brown pebbles. A person with a backpack stands far away, staring off in the distance.

It’s already been a month since I moved to Lisbon. As an Asian girl setting foot in Europe for the first time, almost everything feels new — the culture, the streets, even the rhythm of everyday life. My university is about an hour away from my dormitory, and each morning I take the Carris — the public bus. It’s often crowded, especially during rush hour. On days when I’m carrying groceries, standing becomes a real struggle.

At the front of the Carris, there are four seats reserved for the elderly, pregnant women, parents with children, and people with disabilities. Every time I see those signs, I ask myself quietly: 

Where do I fit in?

Am I “normal”?

Am I someone with a disability?

For a blind person or someone in a wheelchair, the condition is visible — their challenges are seen and, therefore, more understood. But for someone like me, living with Crohn’s disease, the weakness is invisible. Even carrying my laptop sometimes feels like lifting a boulder. On bad days, groceries are out of the question.

A few times, I’ve taken one of those reserved seats just to rest for a moment — and on more than one occasion, an older passenger scolded me in Portuguese. I didn’t have the words, or the energy, to explain.

To make things easier, I sometimes order my groceries online. But when the delivery person arrives and I ask them to carry the bags up the stairs, I often get that same puzzled, slightly judgmental look — as if I’m just being lazy.

The truth is, many people still don’t know what Crohn’s disease is. And when you’re in a new country with a language barrier, explaining your condition to every stranger sometimes isn’t possible.

One day, I was sharing this with a senior from my university. She listened and then said something that stuck with me:

“From the outside, you just look a bit tired and thin. A lot of people are like that. How would anyone know what you’re going through?”

And she was right. There’s no visible “signature” for people with invisible illnesses like IBD. No sign that quietly says, I’m struggling, even if you can’t see it.

That “signature” matters — not just for access to certain rights or support, but also for empathy. When people can recognize what you’re dealing with, even without words, life becomes just a little more humane.

I’ve been thinking: instead of only pushing for general awareness, maybe it’s time for a more practical step — some kind of universal identifier for invisible disabilities. It could be a color band, a card, a small badge — something that lets others know that, while we may look fine, we’re fighting battles they can’t see.

Because when life is already heavy with these hidden challenges, constantly having to explain yourself shouldn’t be another weight to carry.

Thank you for reading. See you next month.

Featured photo by Kyle Miller from Pexels.

My Crohn’s Journey as a College Student

by Alexis Gomez (California, U.S.A.)

Two side-by-side photos of Alexis, a young woman with medium-brown skin and dark brown hair. There is a graphic of a curvy yellow arrow, pointing from the first photo to the second. The photo on the left is from Alexis’ freshman year of college, after just being diagnosed with IBD. Alexis is standing in front of a wall of ivy, wearing comfortable clothes. She is smiling, but looks pale and tired, with a bit of prednisone “moon face.” The photo on the right is from Alexis’ college graduation. She stands in front of a walkway with many arches, wearing a blue graduation cap and gown, with a yellow stole, and is smiling widely.

When I was younger, I had a vision of what my college experience would look like. It was more or less in line with what I saw in movies and TV shows – living away from home, making lots of friends, joining tons of clubs, going to clubs, perhaps finding the love of my life, maintaining my straight-A academic excellence, and knowing without a doubt that my future was secure.

I had always been a planner, always thinking ten steps ahead of where I was in the present. For as long as I could remember, I prided myself on being independent, meticulous, and motivated to succeed. I thought I had it all figured out, and that all I had to do was check off the boxes of my to-do list toward success. It was so simple, so straightforward… until it wasn’t.

What I never could have predicted or hyper-planned for was being diagnosed with a chronic illness at the age of eighteen. Shortly before starting my first year as an undergraduate student, I began experiencing symptoms of IBD. And throughout the course of my first quarter at school, my symptoms worsened. I had constant abdominal pain, urgent and frequent bowel movements with blood up to ten times a day, and a deep sense of shame that stopped me from telling anyone. Whenever I was with my friends and I had to use the bathroom, I’d laugh it off and say I just had “tummy problems.” The thought of telling anyone what I was actually experiencing felt terrifying because I didn’t have a clear answer for what was happening. I felt like it was my fault that I was experiencing these gastrointestinal issues; like I had somehow inflicted this on myself, and that just maybe it would go away if I ate healthier and prayed more.

As someone with a family history of IBD, there came a point where I knew deep down what was happening. I had been in denial for several months, thinking that there was no way I would have to live with a chronic illness forever. It couldn’t happen to me, I thought. Why me? This wasn’t what was in my perfectly thought-out and extensive plans for an amazing future. With every acute misdiagnosis from my doctors, I simultaneously felt frustrated but also held onto hope that I’d just suddenly start to get better.

During finals week of my first quarter of undergrad, I couldn’t hide or ignore my symptoms anymore. The burning pain in my abdomen reached a new level of severity, and I was overcome with weakness and fatigue. I could barely eat anything, and I couldn’t stand up without getting heart palpitations and being out of breath.

My mom helped me schedule an appointment for a colonoscopy to finally see what was going on and to confirm what I had been suspecting. The weeks I had to spend waiting leading up to the colonoscopy were tough. I rapidly lost weight (over 40 pounds within 2-3 weeks), I could barely get food or liquids down without vomiting, I would spend hours on the toilet trying to get some sort of relief from my abdominal pain (often with no success), my mouth was perpetually as dry as the Sahara, my eyes looked bloodshot and inflamed, and I couldn’t walk anymore. As I waited, I felt my autonomy and my identity slipping away from me. How could I be the daughter whom my parents knew was responsible, and who they didn’t have to worry about? How could I be the older sister to my younger brother, who always looked up to me, the older sister who could always provide a listening ear, comfort, and advice? I didn’t know who I was when I couldn’t even serve myself food, put my plate in the sink, walk myself to the bathroom, bathe myself, or brush my own hair. I didn’t know who I was without my independence. And I felt an overwhelming wave of guilt for putting my loved ones in a position where they had to do everything for me and see me suffering every single day.

I remember being in the recovery room after my colonoscopy and hearing my doctor say something that would change my life forever. In an oddly cheery tone, he said: “Well, Alexis, it looks like you have Crohn’s Disease!” I remember being 1) shocked initially, 2) put off by his cheerfulness, but also 3) relieved. Hearing that I had Crohn’s was scary, but I also knew I finally had an answer. I didn’t have to hide behind the curtain of the unknown or the inability to explain why I had the symptoms I did. I knew Crohn’s was an autoimmune disease, meaning that my body had one day mistakenly begun to attack its own healthy cells. It wasn’t just something I ate, it wasn’t going to just go away on its own, and it wasn’t my fault that it happened.

Although I was fortunate to respond well to the first biologic treatment I tried, my Crohn’s diagnosis came with other complications. The several weeks spent with untreated chronic inflammation and prolonged immobility led me to develop blood clots (deep vein thrombosis, aka DVTs) that also traveled to my lungs (pulmonary embolisms, aka PEs). I remember being hospitalized during my second quarter of undergrad, in the middle of midterms, and frantically emailing my professors for extensions as I was in the ICU.

About a month after my hospitalization, my hair began falling out in chunks. It felt like I had reached a new low, and I couldn’t recognize myself anymore when I looked in the mirror. Even though my Crohn’s was responding well to my treatment, the other comorbidities that came with it, though temporary, were just as difficult and scary to navigate. Throughout this period of time, I had somehow managed to continue being a student, attending lectures and discussion sections through Zoom during a COVID spike in California when students were given the option to attend classes either online or in person. However, as spring quarter rolled around, and students at my university were required to be back in person, I knew I wasn’t well enough to return to campus. I had to withdraw from the university for the quarter – a decision that wasn’t easy. Still being a student had felt like the last bit of normalcy in my life. Now, all I could focus on, all I had to focus on, was my health.

Throughout the spring and summer, things gradually got better. I had fully weaned off prednisone and was in remission with my biologic. I was able to eat again and my bowel habits were great. My blood clots were being monitored as I was on anticoagulant medication. I was going to physical therapy to relearn how to walk, and with every week, my gait looked and felt better. My steroid ‘moonface’ had subsided and finally, my hair started to grow back.

By the time fall came around, my health seemed to have made a miraculous comeback. All my labs were fantastic and my doctors told me that I was doing everything right. My friends and family would tell me how they had been thinking of me, praying for me, and how they were so happy to see me better. It made me feel proud of myself and my resilience. I felt grateful to be alive.

I started to prepare to go back to school after having been out for six months, which felt like a long time to me as someone who had always prioritized school and getting good grades since I was a child. I wanted to leave the dark period of my life I had just gone through behind – a period where I had felt so isolated, helpless, angry, depressed, and like I didn’t want to be here anymore. I wanted to move forward, to be normal again, to show everybody around me that I could overcome it all.

I started my second year of undergrad by enrolling in more classes than I had before and starting a new job. I went full-force back into the real world, feeling like I needed to make up for lost time. I didn’t want to keep feeling behind compared to my peers. Without realizing it, however, I was putting pressure on myself to be some sort of inspiration. I wanted to prove to myself that I could live the life I had envisioned, regardless of Crohn’s. For the first few weeks back at school, I was energized. Then, the workload I had set for myself became difficult to manage. I found myself coming back to the room I was renting with fatigue that I couldn’t just sleep off. Sometimes, my brain felt so foggy that I struggled to concentrate on my homework. I noticed I felt especially tired the day after my injection every two weeks. There were days when I would lie in bed and ruminate about everything I had gone through. Even though I was back in school, I had a job, and I could spend time with friends again, life still didn’t feel normal. I had a hard time completing tasks, staying motivated, and as the school year went on, my grades started to slip. I felt embarrassed that I was still having a hard time getting back on track. I still felt like there was a dark cloud looming over me most days, despite the fact that on paper, my physical conditions were under control. I hadn’t expected that even after the worst of it had passed, the trauma would still be there, and I would still grieve my old self before Crohn’s. While my doctors had equipped me with the treatments needed to manage my physical ailments, what l wasn’t prepared for was the effect being chronically ill would have on my mental health and well-being.

It took therapy, trial and error, attending peer support meetings, and time for me to get to a point where I recognized that it was necessary for me to scale back on how many units I was taking each quarter, and that it was okay to let others know I was struggling mentally and ask for help. The latter is still something I find challenging at times, but I’ve made progress and continue to work on it!

I’m not immune to bad days or weeks, but overall, I’ve managed to reach a point where I don’t always feel that shadow of sadness I did for a long time. Although the past few years may not have looked like what I expected growing up, I still managed to finish my degree in two different majors, not just within four years, but a quarter early! My first- or second-year student self would be shocked and perhaps not even believe it. My graduation ceremony was just a few weeks ago, and it prompted me to reflect on my journey of being diagnosed with Crohn’s as a young adult in college. 

My undergraduate years were full of life-changing experiences with lots of challenges. But I’m lucky that those years still gave me good memories to look back on and friendships that I anticipate will last for many years to come.

Over the past few years, I’ve grown more comfortable sharing my diagnosis and experiences with others. Having Crohn’s has made me more appreciative of the good times in life because I know good health and tomorrow are not always guaranteed. I’m also lucky to have found a community of people who understand the roller coaster that is living with IBD/a chronic illness. I hope that any other person going through something similar who may be reading this knows that they are not alone.

My progress hasn’t always been linear, but ultimately, I find myself at a place where I accept what life has thrown at me and where I recognize that I can and will be able to navigate life’s future hurdles. I surrender to the fact that I won’t always be able to control what comes next, but I know that difficult times will pass because they have before. I might not always have the answer to what the future has in store for me, but I know I’m proud of how far I’ve come and where I am today.

Potential IBD Accommodations for Teachers and Students (from a NYS Teacher)

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

This infographic was created from discussions with other teachers in the United States living with IBD.  Through those conversations, I realized that the workforce can be a scary and precarious place for people living with chronic illness.  As a unionized, tenured teacher in a public school, I acknowledge I am in a privileged position to disclose my IBD.  However, a teacher or student can choose not to divulge their chronic condition for a number of reasons including job instability or the fear of being singled out.  I made half of my graphic focus on discreet ways to manage your IBD within the education system without revealing personal health information.  This half includes having an emergency supply pack, trusted contacts that you can call for assistance, and knowing the location of private bathrooms instead of public stalls. 

The other half of my picture illustrates ways a student with an IBD can pursue written accommodations to protect them at school.  These include obtaining an Individualized Education Program (IEP) or 504 Plan after their doctor writes a note confirming their diagnosis and its impact on the student's daily life.  In the student's records, they would be classified under the "Other Health Impairment" category and this form would be reviewed and adapted annually.  Parents, teachers, and district personnel would work together to create an IEP or 504 plan that supports the student's needs, helps them manage their illness, and works to reduce the student’s stress in an educational environment.  Teachers with an IBD can also present a doctor’s note to their district to receive reasonable workplace accommodations. 

5 Things I've Learned Living On My Own

By Laurel Dorr from Maine, USA

I have been away at college for the last couple of months, and although I am living semi-independently in a dorm, it’s the first time I have lived away from my parents.

Below, I talk about 5 reflections and lessons that have come up as I learn to live with inflammatory bowel disease (IBD) in a new environment.

1. What you need is not “too much.”

Fortunately, my college has provided several crucial housing accommodations for me. Yet I have found myself avoiding eye contact when people asked me about my roommate (I have a single room), or hesitating to mention the attached bathroom when someone asks about my room. I kept unconsciously feeling like these were awkward details, or even like I was “bragging” about my living situation.

But these accommodations, along with several others, have made my life so much more manageable. And if anyone has a problem with it, they have never said so to me. Don’t let fear or shame keep you from asking for what you need. I can’t imagine what my life would look like without these supports.

2.  It’s okay to be alone. 

I have often felt out of place here, for a number of reasons; not least because I am a transfer student, and slightly older than a typical undergraduate. There are also health concerns to consider: for instance, I can’t safely do things many of my peers do, like drink alcohol, go to crowded parties, or even stay out late. (No judgment against those who can!)

For one reason or another, I haven’t forged many deep connections or friendships yet, and frequently find myself studying or eating at the dining hall alone. But, I don’t see it as time wasted.

Instead, I have used this time to get used to being alone, and focusing on self-care. My body is experiencing just as much upheaval in this new environment as my social life is, and taking the time to acclimate and get comfortable with it has been beneficial to my health. I will find the right people eventually—but for now, my attention is where it needs to be.

3. However… part of self care is doing what’s best for you.

Even when it’s uncomfortable. When I talk about being alone, I don’t mean to say that I haven’t tried new things or put myself out there. I know that it is easy for me to self-isolate. Sometimes, it was even necessary, when I was sicker than I am now. But that isn’t always best for me. So while I cherish my alone time, I also try to step out of my social comfort zone.

For example, I usually set aside time for at least 1-2 campus activities (clubs, events) per week. In general, I also avoid eating or studying in my dorm room as much as possible—even if that just means reading in my floor’s common/lounge room, some days. Baby steps!

4. Doing the hard things is just as important as resting. 

I know I need time to rest and recharge, but it has taken me awhile to get on a good schedule and routine. College classes are hard enough, but living semi-independently makes it even more challenging. For instance, taking time each week to do things like laundry and cleaning, walking some distance to dining halls and classes across campus, attending office hours and extracurriculars—all of it builds up, and usually takes more time than I anticipate.

What has helped me is cliché, but true: setting up a schedule, and sticking to it. If I put off a difficult homework assignment until the last minute, it ends up taking away from my relaxing time in the evening, which makes the next day that much more exhausting, and I start putting off even more work. It’s a difficult cycle to break, but the way I feel and function when I manage my time well makes it worthwhile.

5. Make your space somewhere you want to spend time. 

I have also found it helpful to make my space feel refreshing and comfortable. Although I try not to spend too much time in my room, that’s not always possible. Some days, my IBD symptoms make it harder to leave.

Rather than let my environment add to that stress, though, I make sure to keep my curtains open and my space tidy; I have decorated with nature-inspired themes, like potted plants, artificial vines, and floral bedding; and I made sure to fill the room with cozy items, like a soft area rug and plenty of pillows.

These are just a few examples of how I manage my IBD within college life and living (more or less) on my own. However, it is an ongoing learning process for me. What have you learned about living on your own with IBD?

Featured photo by Ja Kubislav from Pexels.

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.

---

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.

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. 

Crohn’s in College: Perspectives from a Former D1 Student Athlete

By Rachael Whittemore

Erin and I met in a serendipitous way - I was flaring and having a rough day at work, so I had to switch places with someone at work so I could sit instead of running around in surgical dermatology. She had come in for a triage appointment. We were talking and I made a joke about my stomach and she replied - “oh, I totally understand that, I have Crohn’s.” It couldn’t have been more perfect. We laughed about our IBD and bonded over our love for UNC. I also found out she would be starting a job at the clinic soon! She became a part of our “PA pod” and a beautiful friendship began. Erin is someone who gives her all in everything and is a light to anyone she meets. Like everyone with IBD, her story is unique and she has found a way to truly thrive in spite of it. She graciously offered to answer some questions about life and her journey with Crohn’s disease.

We both share a love for missions and travel!

Tell us a little bit about yourself. What are you up to right now and what plans do you have planned for the next year? 

Raised on a farm in rural North Carolina, I graduated from my dream university (UNC-Chapel Hill) back in 2017 and have stayed in this lovely city ever since. After graduating, I traveled some and then landed this sweet medical assistant job where I became Rachael’s trainee. I am still gaining experience hours in the clinic, with plans to apply to Physician Assistant programs next summer. Along with working full-time, I have been pursuing a second degree in Public Health from North Carolina Central University. My hope is to join public health education and community outreach into the way I practice as a Physician Assistant one day. 

Working as MAs together at Central Dermatology.

What was it like being in college and starting to experience IBD symptoms during a time that is often deemed “some of the best memories you will make?” How was this affected by you playing a sport? 

Overall, my first year of college was pretty miserable. As a first year student athlete, having my first true flare within the first month of training was about the worst timing it could’ve been. I had experienced some fatigue and abdominal pain throughout my senior year of high school but, with the stress of starting college courses and the physical toll softball was taking on my body, the pain and exhaustion was consuming. I had no idea what was going on with my body and why it seemed to be betraying me. I couldn’t perform athletically the way I had before and no one believed me when I tried to explain how I was feeling. In their defense, I didn’t know how to advocate for myself since I didn’t understand what was happening. Nevertheless, I still felt isolated from my teammates, coaches and friends. It looked like I was some freshman who came in lazy, poorly prepared physically, and mentally weak. In reality though, I was struggling to get out of bed in the mornings for weights. I slept on any bench I could find in between class (even if it was for only 5 minutes). My body constantly ached and I’d be back in the weightroom or on the field before I ever felt any recovery from the last training. I’d clutch my stomach at night from the pain. The majority of the time, I felt awful physically and, in turn, felt awful about feeling so weak and letting my team down. It was a difficult time for me. 

How long did it take for you to get an official diagnosis? Was it difficult? Did you have any issues with providers not taking you seriously?

From my first symptoms back in high school to the beginning of sophomore year at UNC, it took over two years and five different doctors to diagnose my Crohn’s disease. This journey was definitely one riddled with frustration and hopelessness at first. I knew my body felt off but after having three different doctors tell me things like, “It’s just a stomach ache, suck it up,” and “Well, if your primary care provider doesn’t think it’s anything, I don’t either,” I decided that I must be crazy and I just had to deal with the pain. When the flare hit me hard at UNC, I went to another doctor to reevaluate for a fourth opinion. After a lot of advocating, he finally tested some labs through blood work. The results showed that I had severe iron-deficiency anemia but the cause wasn’t looked into any further. I remember offering up that maybe it was related to the significant, recurring abdominal pain I’d been experiencing but that was quickly brushed off. My diet was adjusted to help increase my iron intake, but I felt worse as the diet consisted of all the foods that (I now know) cause my flares. It wasn’t until after I had to medically retire from the softball team at the end of my freshman year that I went to see my fifth and final provider. She sat with me, listened to me, and fought with me to find an answer. Within about a month or so, I finally had my diagnosis. The diagnosis proved to others that my struggle was real, but more importantly, it finally gave me a chance at finding some peace. 

What advice would you give other young adults with IBD who may have been seriously playing sports prior to their diagnosis?

I would love to encourage my fellow IBD athletes that this diagnosis doesn’t have to mean an end to your athletic career. I was blessed in that, by my senior year, my Crohn’s was in remission. I laced up my cleats and wore that Carolina jersey proudly for a final season. Was my experience the same as my teammates? No, my conditioning had modifications and some days I had to listen to my body and rest. But who cares? There’s no shame in that. In fact, it’s even more incredible that we’ve been provided the opportunity to compete and perform at that level despite our adversities. I found immeasurably more joy in my sport that final season and realized how much I had taken it for granted before. No matter how much we pour ourselves into our sports, we are not entitled to perfect batting average, fielding percentage, or even health. Sometimes, we get to be creative and find ways to integrate back into our sport or even just an active lifestyle. If you are able to continue athletics, I highly recommend having an honest conversation with your coaches and teammates about expectations and trust. Don’t be afraid to advocate for yourself and your health. If you aren’t able to continue your athletic career, I grieve with you and that loss. I understand the identity crisis that ensues as soon as you are no longer an athlete, however, so much growth comes out of this season of life. I encourage you to shift your hope into something greater than a sport. 

What advice do you have for young adults who are trying to find their way after their diagnosis? 

First, I’d recommend taking some time to wrestle with the reality of the diagnosis and what this means for you personally. Lean hard into your community because having a support system is so crucial. It can be overwhelming in the beginning but trust me that things even out over time and you’ll start to adjust to your new normal. Once you get your bearings and start looking forward, don’t allow your IBD to define or limit you. There is so much more to you than your diagnosis. In a really twisted way, Crohn’s was potentially the best thing that could’ve happened to me. It caused me to really evaluate my life and my heart. It opened up my eyes to new passions and the desire to pursue them. 

After medically retiring from softball for my sophomore and junior year, I was able to study abroad in Scotland for a semester and backpack around Europe for eight weeks after. I became more involved with a campus sports ministry called Athletes In Action, making lifelong friends and growing deeper into my relationship with God. I began to merge my loves of traveling and Jesus together on mission trips abroad. I’ve even recently been on a medical mission trip back in February, which was especially memorable for me. My heart has never been so full. All of this is to say, there is so much life left to explore and experience in this world. It would be a shame to let IBD take that away from you.

On a recent mission trip in Belize - working as a dental assistant!

What advantages do you think living with Crohn’s disease gives you in the real world? Has any reflection changed your perspective on living with a chronic illness going forward?

My Crohn’s disease has given me a certain confidence and purpose for my career path. Before all of this, I wasn’t sure what I wanted to pursue professionally and now I am passionate about becoming a medical provider one day. Even as a medical assistant now, I have been able to relate to my patients on a deeper level when reviewing biologic injections and other medications. Being able to sit with a patient and provide information and counseling from personal experience really helps build trust. While my experience with the healthcare system wasn’t a positive one to start, I’ve since had providers that have made me feel heard and valued. I want to be able to care for others in such a personal and profound way like my medical team has for me. Even if you don’t want to go into the medical field, there are lessons from our experiences on how to treat others that apply to all aspects of life.

I am also grateful for the advantages of endurance and perseverance that I’ve gained. With IBD being a chronic disease and after seven years since my diagnosis, there have been a lot of opportunities to wallow in self-pity. Don’t get me wrong - sometimes there are still days where I’m frustrated with having Crohn’s - but overall there have been so many victories over it. Each time I’ve adjusted my treatment regimen, found yummy recipes in my diet or shared my testimony, I've experienced joy. Celebrate the little things and appreciate the magnitude of what we’ve overcome. Living a full and purposeful life with IBD is possible and I want to empower you to continue persevering to find that. Throughout this experience, I’ve been shaped into the woman I am today and it has provided me the capability to handle all that will come in the future.

---

Living Beyond the Limits of IBD

By Grady Stewart

“Tired of feeling dizzy from my situation, I realized I had a choice. I could let anger drive my college experience, or I could appreciate the things I was capable of doing. “

---

I lived in a dorm building named South Hall when I was diagnosed with ulcerative colitis. It was four floors of ambitious and energetic college freshman. At night, I could hear a wavy hum of untapped potential buzzing in the air. The beginning of college, or the beginning of anything, really, is always incredibly alive with possibility. I was surrounded by other students who were tired of waiting. Together, we all marched headlong in any adventure that awaited us. We were adults at last. It was our time.

The community atmosphere and energy of college is rarely found anywhere else. Specifically, the college dorm is the world’s most diverse ecosystem. You throw a few hundred students who come from different places and who have different backgrounds into one building. You tell them to coexist, and somehow, it’s self sustaining.

While college is a time of new friendships and experiences, it’s also easy to blend into the bustling background of daily college life. Adulthood comes with stacks of new responsibilities. It’s cutting the ropes that have anchored your life, and sailing off into the unknown. Independence means making difficult and often ambiguous decisions on your own. Living with a chronic illness, such as Crohn’s disease or ulcerative colitis, complicates young adulthood even further.

Many of my classmates were seemingly able to attend class, complete household chores, and party every weekend with ease. For me, however, it was a challenge. It was difficult to look around at the thousands of students surrounding me and see them achieving things that felt impossible to me. It’s frustrating to have persistent anxiety about where the nearest bathroom is, when for others it’s an afterthought. Simply put, my first taste of freedom was bittersweet. Like Prednisone, the aftertaste lingered and was hard to swallow.

It’s isolating to feel weak and abnormal. Moreover, physically living in a dorm room can be lonely. Other students were able to roam the campus without any concern, but often I confined myself to my dorm due to pain. I felt regret at not being able to fully experience certain aspects of college life. Chronic illness is a spiral that envelops your life. It spun around me until everything else in life was blurry. Tired of feeling dizzy from my situation, I realized I had a choice. I could let anger drive my college experience, or I could appreciate the things I was capable of doing.

There’s no clear solution to unraveling the sticky web of chronic illness. Everyone has a different relationship to their body and their health. Everyone has a different path to college, their career, or adult life in general. Today, I’ve graduated from college and survived numerous triumphs and setbacks. I have a full time job, and get excited about buying snacks in bulk from Costco. Clearly, I’m a real adult. One of the keys to embracing life with ulcerative colitis or Crohn’s is embracing change.

It’s easier written, or said, than done. However, I believe that illness is not an impenetrable barrier. It’s an obstacle, a heavy boulder, that patients must carry. Still, everyday that I live with ulcerative colitis, I learn something new about myself. As a result, it’s become easier to adapt to life with illness. I know my strengths and my weaknesses, and I have gotten stronger. My experiences have made it easier to move, while carrying the weight of my diagnosis. Transitions, like from college to employment, are not impossible for me, instead they provide an opportunity for me to overcome my illness. After all, I have IBD, but I am not my disease. In the end, I know the boulder of IBD will erode into a tiny pebble. Until then, I’ll keep living beyond my limitations.

---

Crohn's on a College Budget: Tips for being a mindful shopper and saving money

By Erin Ard

Probably one of the biggest thing I struggled with in college, other than balancing my social life with academics, was money. I wasn’t very adept at budgeting my spending. I probably ended up spending much more than I needed and wasn’t able to stretch my money out as long as I could have. I spent what I had on what I wanted and there were no trade-offs; that is, until I realized I had been spending too much and would forego grocery shopping that week. Not a good spot to be in! Especially for someone who experiences stomach pain when I go too long not eating. The healthy way to approach spending would have been to ask myself, “How much money is left over after my necessary expenses?" Like tuition, books, rent, utilities, Remicade copays, etc. "How much do I want to spend on groceries? How much do I want to put towards fun?”

If you've ever been asked by your parents, tried to do some adulting yourself, or written up a grocery list, then you may have already asked yourself, "What is my budget?"

The truth of the matter is that setting a budget is entirely personal. How you want to spend your money is up to you? If you want to put most of your green towards 6 packs of assorted White Claws for college football game days, leaving yourself $50 for groceries, I can't stop you. You do you, honey! I just hope I get an invite to your tailgate!

There are so many factors to account for when setting a budget, including: money distributions, frequency of spending, being environmentally conscious. Reaching the point of having a well-groomed budget is a process of trail and error, meaning you'll have to dip your toes in before you can perfect it. This month I want to help any of you curious about how to set a monthly college budget, mindful grocery shopping, and finally, tips to save money both before and while at the store! Skip to whichever section you are most curious about!

---

Making a Crohn's-Compliant Budget

First, calculate your monthly expenses.

Take your monthly income and subtract your monthly expenses that, no matter what, you need to pay! This could include rent, utilities, Netflix, medication copays, and whatever else suits your lifestyle! If you're starting with a financial aid reimbursement, make sure to include long-term expenses over the semester (e.g. tuition or rent through December). You can do this on paper or in a spreadsheet. (Tip: Excel has some nice templates to work from - because why do it all yourself!).

Second, distribute the money left over.

You see the amount left over from your necessary expenses, that's your budget and that's all you get! Let's get a little more specific now. Divide your left over money into these categories: Food (grocery shopping and takeout), Self-care (healthcare products), Fun (for local events or social gatherings), and anything else you can think of that applies to you (medical, credit card debt). If you are having trouble knowing how much to allot, How much do you normally spend when you go to the grocery store?

Mindful Grocery Shopping

Mindful grocery shopping means, well pretty much what it sounds like, not going in and grabbing things mindlessly. You should go shopping with a goal - to buy healthy foods for yourself, on a budget, and within reason.

Be mindful of your current state. In other words, never go shopping when you are hungry. Whenever I go shopping hangry, I tend to hone in on snacky, sugary, junk foods - all of which I shouldn't eat on a Crohn's conscious diet.

Be mindful of what you place in your cart. Are you shopping from a list? Are you grabbing a bunch of ingredients for a recipe? Will you get home and inevitably realize you have a bunch of ingredients but none that form a whole recipe?

Be mindful of how much you are putting in your cart. Get enough to last you until your next trip, but not too much that will go bad before you use it. This is particularly important if you get a lot of fresh produce and perishables.

Tips for Saving Money

Saving money on your groceries mirrors being a mindful shopper and includes proper planning.

• Research some recipes you'd like to try and plan out a weekly menu. Start with planning 2 breakfasts, 2 lunches, and 3 dinners (since you will probably have leftovers).

• Tailor your recipes to the produce that's in season. These veggies and fruits are the cheapest at that time.

• Make a list of all the items you need and ONLY GET THOSE ITEMS! Unless, of course, you stumble upon something you forgot.

• Grocery shop every week or every other week. This will help cut down on waste and allow you to replenish your fresh produce.

• Stock up on nonperishable items you use most often when you can (i.e. there are sales!). This includes supplements or other products that help sustain you during an IBD episode.

• Compare the prices with off brands or similar items. This may not save you a lot, but a little adds up over time.

---

There are plenty more factors to be aware of when setting up a budget and being a mindful shopper when you have Crohn’s disease. I hope this article has helped you think more about being a green-, environmental-, and personal health-conscious adulter!

What tips do you have for anyone with Crohn’s or Colitis and shopping on a budget?