Caregivers: Spotlit in the Shadows

Recently, one of HONY’s long (12-part) post blew up, allowing another miracle to be added to the community’s ever-growing testament to human generosity and compassion. The posts follow the journey of Cristy’s Kitchen, through Cristy’s life, roles and perspective. A mother to 5 girls, she started experimenting with food recipes only when her first daughter started showing autoimmune illness signs as a teenager. It’s been made clear from her story that she first started her recipes, which have since garnered significant attention from many people all over the world, only because she wanted to help her daughters with their illnesses. Her life and actions speak of love, grit, determination, hope and faith, and I think some of us, as patients of autoimmune diseases, can relate to having people like her in our own lives, carrying us in our darkest moments.

 Caregivers undoubtedly play an immense role in a patient’s life. It can be argued that for chronic conditions like IBD, personal relationships with family, friends and significant others can ultimately only last if the relations juggle their roles between being caregivers and their normal roles (father, mother, sibling, significant other, friend). The mix of the uncertain characteristics of chronic autoimmune conditions with the current overburdened healthcare systems across the globe, caregivers are the ultimate backbone that help people survive not only through the physical realities, but also through the psychological, emotional, and financial turmoil. Yet for all we say about invisible diseases, not much is said about this significant invisible labor. Caregivers not only help us, patients, but are the unacknowledged help to doctors and hospitals, when they help buy time for diagnosis, and take our rollercoaster up-and-down rides with us.

  Caregivers: A South Asian Context

Generally, in south Asian communities, mothers already shoulder the huge burden of bringing up children and caring for their wellbeing, oftentimes even at the cost of their own health. For young adults with IBD in India, the role of the mother as a prominent caregiver is heightened and intensified for two main reasons: (1) overburdened private and public healthcare systems, (2) lack of mental health normalization and support infrastructure. It is also important to acknowledge, however, that prominent caregivers can also be fathers, older siblings and other family members just as much as mothers. It is normalized to blame these caregivers, more often than not mothers, for any “defects” that a child may have, whether that is due to the child not adhering to the community’s rules, or because the child is unable to perform in a way that the community deems fit. IBD and autoimmune conditions from a south Asian lens is widely considered a fault, and one that cannot be tolerated to come out of nothing, leading to further the idea of blaming the mother for not doing enough and/or failing to stop the illness. However, as patients, we eventually come to accept and acknowledge the curious nature of autoimmune diseases (that they cannot be predicted, nor caused or solved), and we witness not only our grit during hopeless times, but also frequently, the origin of that: the love, grit and hope our caregivers show. To have that labor and foundational support go unwitnessed and unpaid by the world around us is one thing, but hearing negative comments that place blame and point fingers is another. 

In my personal circumstances, my mother was the first person I revealed my symptoms to, the only person to accompany me to every doctor’s appointment and lab appointment, and stayed awake with me on countless nights as I turmoiled through the pain and bathroom visits during my flare ups. She outstandingly also showed up when I took the decision to spend a year in rural India, with limited and chaotic bathroom, food and water provisions, riddled me through my bursts of insecurity, and stood as an unwavering pillar of physical and emotional support when I was hospitalized. I can say for certain that I only survived ulcerative colitis and my year in rural India because of her. In my sibling’s case, my father went above and beyond being his main caregiver, and at times, mine too. And yet, while I try to distance myself repeatedly from the guilt of having an illness that has no clear cause, I also deal with people blaming my parents, trying their hardest to find a recipient for the blame. It is heartbreaking.

 These comments not only arise from common people, but can also show up in the tone and words from well-educated and trustworthy people, like doctors. While it may seem that the above actions are on the list of expected actions that a mother/caregiver has to carry out, it is important to highlight that it is absolutely not necessary and still constitutes labor and time that could be used elsewhere in return for payment. Additionally, from a productive economy/labor perspective, IBD patients are almost only “productive” to the economy due to the invisible support of their caregivers. This is yet another reason that begs policymakers over the globe to consider the unique circumstances of patients of chronic autoimmune diseases and recognize the unbeatable power of caregivers in their fight.

The Patient-Doctor Relationship

Why is a good relationship with the doctor important for patients?

Have you ever considered how your relationship with you doctor affects your health?

“There is no cure. Only control of the disease symptoms”. How many times have you heard this? How harsh does it sound, especially the first time?  

Are you ready to build a new relationship, a completely different relationship with your doctor? This relationship will be unlike any other relationship and certainly no one has experienced it again until the time of diagnosis. 

This is a long-term relationship that will evolve over time. Your doctor will know many things about your personal life, your job, your family, etc. Above all, however, over time, he or she will learn YOU, and your personality. 

And why this is important?

As a patient you have to break down the wall around you and allow the doctor to enter your world, the world of your disease and how you experience it, even for a while. Of course, the doctor must have the empathy required for that.

This will not happen overnight. It may take years to build this relationship. As this relationship begins to build, you will feel the doctor as a member of your family, you will share with him or her important moments. 

Is always the relationship between patient and doctor like that?

Unfortunately, no - however, I deeply appreciate those doctors who patiently and carefully support patients with chronic diseases. It’s nice to see a person being 100% present.

Celebrating Black History Month in the IBD Community

“Representation creates trust, so why aren’t there more people who look like me included in research and education?” This quote by Melodie Narain-Blackwell brilliantly describes the feelings that so many Black and brown IBD patients have. In recognition of Black History Month, what can we as a chronic illness community do to support our fellow Black IBD patients this month? Standing in solidarity with this marginalized community, helping amplify their voices, and acknowledging their experiences are ways to starting bridging those gaps. 

It is important to support BIPOC patients by recognizing the additional barriers that minorities, especially those in the Black community, face when navigating medical care and public health. Historically, Black people have been marginalized, abused, experimented on, and underrepresented in medical trials and research. Being seen as easily disposable, Black people have had to endure the systemic injustices of medical discrimination and medical racism. Crohn’s and ulcerative colitis are chronic diseases that statistically occur less frequently in African-Amercian populations. Statistics also show that Black people are more likely to not have their symptoms believed or validated, which has ushered a crisis of misdiagnoses. It is clear that implicit bias and antiquated medical beliefs are factors in the hesitation that Black people experience in the medical field. This phenomenon has led to an inherent distrust of medical institutions and treatment in the black community. As IBD patients we understand that having the right diagnosis and starting treatment is vital for healing and longevity. This concern is magnified in the Black community due to the systemic injustices previously mentioned.

 When I first started to become ill in 2019, I did have some internal generational trauma that made me hesitant when seeking medical care. After months and months of pain I finally decided to go to the hospital to get some answers. When speaking to the doctor about symptoms, I vividly remember feeling an overwhelming sense of unease rattle through my bones. What happens if my experiences and symptoms aren't taken seriously? How can I truly convey the severity of how I feel? Although I did not receive a proper diagnosis from the hospital, I was lucky enough to have the staff members at the hospital believe and validate me. I was privileged that this was not an overtly terrible experience, but it does not take away from any reservations I had, as well as the reservations that countless other Black people have. 

We must acknowledge and hold space for Black people within the IBD community through advocacy. Having a diverse range of anecdotes and stories will only propel this community to further embrace the lived experiences of so many Black and brown people who are voiceless. Education and conscious activism will only lead to more positive intersectional change. 

In recognition and celebration of Black History Month, here are a few black pioneers in the IBD community as well as Gastroenterology:

Sadye Beatryce Curry was the first female African-American gastroenterologist in the United States. On top of her endless list of accomplishments, she was a founding member of the Leonidas Berry Society for Digestive Disease as well as the first woman to be elected chair for the Internal Medicine Section of the National Medical Association.

Leonidas Berry was the first African-American gastroenterologist in the United States as well as a pioneer for the advancement of endoscopy procedures. Dr. Berry also invented the gastroscopy scope. Leonidas Berry has a passion for bridging the gap of racial problems in public health. 

Gary Richter is a gastroenterologist and currently runs Consultative Gastroenterology in Atlanta, and has become the first African-American president of the Medical Association of Atlanta. 

Melodie Narain-Blackwell is the founder of Color of Crohn’s and Chronic Illness (COCCI) which is a nonprofit focused on increasing quality of life for minorities who battle IBD and related chronic illnesses.

Pandemic, Lockdown, Isolation and Chronic Illness

It has been almost a year now and we are still in the middle of a pandemic waiting for our lives to return to normal. However, reality may never be the same again. 

So much has changed, but it seems like nothing and it makes it difficult to feel the comfort of real security.

My return - and the return of many other patients with chronic conditions- to normality may be further away than most of you. But I know that all this is equally difficult for all of us. 

They say that only the elderly and people with underlying diseases are at risk. The vulnerable population. 

But what happens when you are the vulnerable? 

I belong to those who they call vulnerable. I never hid my illness nor was I afraid of the stigma. 

I look young and healthy, but I’m not! 

I’m immunosuppressed, which makes me vulnerable to any kind of infection. 

We have been in lockdown for months. This is certainly not easy, nor is isolation.

I understand that it is difficult to change your daily life, but do you know how many times we, the vulnerable, have changed our daily lives not because we wanted to, but because our health imposed it?

How many times have we canceled a plan at the last minute, favorite foods we stopped eating, parties we missed and much more?

For those of us who are vulnerable, it is not so foreign to stay home, since we have spent long stays in our home and before COVID-19. 

I am in quarantine for a long time. It is not easy, it dissolves your mood, your body. Staying home is unbearable for everyone. 

Isolation, despair. 

And it is now that we are all looking for ways to balance our security with our contact with the world. 

All of this is not so foreign to me. I have some chronic illnesses that require me every day to choose what to do and what not to do. Even before the pandemic, I was very careful, evaluating what was safe to do and what was not. 

I do not understand big differences in my own life now with quarantine; that I am not allowed to be touched, that I can not go to the hospital and maybe two or three more things.

And recently I made a finding that has a lot in common with today's reality. 

I realized that my illnesses will never leave me, while a cure seems like a distant dream for now. 

Yes, I can take steps to improve every day, but what I thought as “normal” in previous years may never come again. For many years I waited for the cure to continue my life. Now that I accepted that I would carry my diseases with me, I gained freedom. My goal now is not to be cured, but to live better. 

So as I realized that it is not realistic to wait for the cure to live, so is the pause we have entered because of COVID-19 until our life is “normal” again. 

And this is the real challenge: how to move on and stop waiting to get back to normal.

Stay safe! 

Challenges as a Crohn's Warrior in Malaysia

In Malaysia, Crohn’s disease is also known as “Western Disease” or “Rich People Disease.” The reason behind this is mainly because Crohn’s is a rare disease in Asia,  particularly in Malaysia, as compared to Western countries. Many in Malaysia have never heard of this disease. Therefore, they are not aware of the Crohn’s and colitis patients’ struggles with their pain, medical procedures and psychological issues. 

At the beginning stage, I had no one to guide me. I had no idea on how to handle my newly diagnosed disease. With no medical background, no one in the family or friends with similar conditions, I struggled to cope with this disease and my normal life. Can you imagine the struggles I faced as a first year university student with my condition? I was  alone and I didn’t even understand what was going on and my normal was no longer a  normal. The internet was my only resource for information other than my doctor. By reading  everything I could find in the internet, I slowly started to understand this disease. Back then,  there wasn’t even a support group for Crohn’s in Malaysia as the disease is relatively unknown to Malaysians. In fact, I didn’t even known about any other Crohn’s patients until I  met one almost a year later after my diagnosis. My gastro doctors encouraged me and other patients to start a group so we could create a support system to each other. Now,  newly diagnosed Crohn’s patients or caregivers in Malaysia have access to few channels  that they could use to discuss, ask, guide and support each other going through this painful disease. 

Living with chronic disease, I had to adjust and adopt to new diet and lifestyle.  Changes in diet were mostly trial and error in the beginning. I had to monitor my  consumption and take note of any changes. Why did I have to monitor those changes? It is simply because I wanted to avoid flare ups that were caused by certain food that I consume.  For me, I found that my Crohn’s is mostly under control when I avoid foods that contain eggs. So I have to ensure my daily food consumption is egg free. If I didn’t, I’d have to visit toilet frequently the whole day. Precaution is needed for Crohn’s patients because flare ups can happen in any situations, therefore any heads up is a good one to have. 

Apart from my diet, I had made some massive changes to my daily activities too. Since I’m an Ostomate, I have to ensure that I don’t partake often in hardcore sports in order to avoid stoma prolapse. 

The understanding and acceptance of IBD in society is still a challenge for me. Most of them, as  I mentioned above, do not know about Crohn’s disease. I remember one of my friends asking me “Sara, is your disease infectious?”. At that time, I just laughed and say “No, it  doesn’t”. The lack of awareness, although understandable, is a huge disappointment when  someone I confided in is not taking any initiative to understand it.

Stress is another thing that I started to consciously manage. What is the connection  between Crohn’s and stress? Well, stress generally affects a person emotionally and mentally as it damages a person’s emotional equilibrium. But it also affects the person’s health. Even a person without chronic disease can feel their health being affected by high stress levels. So, anyone with chronic health issues, such as IBD patients, have higher  chances of having a relapse and flare when they are stressed. It is imperative that I  recognize my stress inducers, my stress level, my tolerance level and ways to reduce stress  so that I do not have chronic flare ups. Although it is impossible to live stress free all the time, I  believe that I should try to manage stressful situations to the best of my abilities.

Navigating relationship with Crohn’s is complicated and challenging. Crohn’s has created ups and downs in my relationships with my family, friends and loved ones. In the beginning it was really hard to explain to them my condition. They did not understand the condition or why and how I got this disease in the first place at all. It took a while for my  family to accept my condition and now they are slowly getting used to it. They are a great  support for me at the moment, and my heartfelt thanks. 

Dealing with Crohn’s is tough enough and unfortunately, Crohn’s is not something  that we can ignore or that it will disappear one day. Every single day is a challenge for me because I go through physical and psychological pain. I have to survive, improve my quality of life and live my life as normal as possible; I hope more people will become aware of  Crohn’s disease, of patients’ struggles, and accept their conditions. Be kind even if you don’t see someone’s struggle, their pain or their decreasing health.

How to Start a Food Diary

Dear Diary,

Sometimes when I eat it feels like a herd of angry buffalo have taken up residence in my gut. The rumbling, the pain, and the regret are all too familiar at this point. Maybe I just shouldn’t eat at all. Maybe that would be best. I wish it could just stop…

Okay, I might not be talking about that type of diary, but I’ve had many days in my Crohn’s journey where that could have described me. Like many people with Inflammatory Bowel Disease (IBD), I have a frustrating mix of good days and bad days. It always baffled me how I could feel good one day, but terrible the next. I wanted to know why. This started my journey of paying closer attention to what I eat, and in turn, keeping a food diary.

Why a food diary?

Our environment is everything we come in contact with on a daily basis that isn’t us. The air we breath, the things we touch, and the food we eat all make up our outside environment. If nothing in our environment impacts a disease, it should feel the same every single day. For me, and many others with IBD, this just isn’t true. In this case, we must start looking at our environment as a source of triggers for our disease.

One of the largest parts about how we interact with our outside environment is what we eat. Every day we eat a variety of different foods, from a variety of different places, that have a variety of different health effects. For me, food was an easy place to start to try to figure out some of my disease triggers. I know what I am eating every day, so why not try to see if there is any connection between what I eat, and how I feel. This led me to food journaling, and it has been an invaluable resource in helping me navigate and manage my own disease. It has given me power.

Research also backs up this idea. In one study done in 2016, one group of Crohn's patients was told to exclude either the four food types they had the highest antibodies to, while the other excluded the four food types they had the lowest antibody to. The group that excluded the foods types to which they had the highest antibodies had significantly lower disease activity and significantly higher quality of life.1 We might not have access to antibody testing, but we can certainly try to figure out what foods are worsening our disease and quality of life.

How to write a food journal

There are three main things to consider when writing a food journal: what you eat, the time you eat, and how much you eat. With these three written down, you will be able to better make connections between foods and symptoms. Let's do an example: For breakfast this morning, you ate a bowl of oatmeal with blueberries, some bacon, and a cup of coffee (I know, I know, coffee isn’t exactly known for its stellar track record in collaborating well with IBD, but it's a made up example!) How would that look?

Tracking Symptoms

Symptoms are a little trickier. Say you have some pain in your lower right abdomen, how do you know what meal might have triggered you? Was it the meal you ate 5 minutes ago? 4 hours ago? The day before? For this we need to know a little bit about how long food takes to get to each different part of the intestines, also called the intestinal transit time. In a normal, healthy adult the following is accurate:

But what if you’re flaring? Diarrhea, inflammation, stricturing, and other aspects of a flare can all impact the amount of time it takes for food to get to the finish line. Some studies have been done on intestinal transit time in IBD patients, with most finding that the intestinal transit time is longer in IBD than in normal healthy subjects.2,3,4 In one patient with Crohn's disease, it took 156.2 hours for one meal to pass through. Talk about taking the scenic route! Like many other things with IBD, you are going to have to take an individual approach and problem solve to figure out how to best match symptoms and meals. 

Resources

Tracking food can be done in something as simple as a spiral notebook, but there are also other options available. Here is a list of some apps you could use instead of a physical journal:

• mySymptoms Food Diary & Symptom Tracker (Lite) by SkyGazer Labs LTD

• Food Diary by WeCode Team

• Cara Care by HiDoc Technologies

References

1. Gunasekeera V, Mendall MA, Chan D, Kumar D. Treatment of Crohn’s Disease with an IgG4-Guided Exclusion Diet: A Randomized Controlled Trial. Digestive Diseases and Sciences. 2016/04/01 2016;61(4):1148-1157.

2. Andersen K, Haase A, Agnholt J, et al. P-113 Gastrointestinal Transit Times and Abdominal Pain in Crohn's Disease. Inflammatory Bowel Diseases. 2017;23(suppl_1):S40-S41.

3. Fischer M, Siva S, Wo JM, Fadda HM. Assessment of Small Intestinal Transit Times in Ulcerative Colitis and Crohn's Disease Patients with Different Disease Activity Using Video Capsule Endoscopy. AAPS PharmSciTech. 2017;18(2):404-409. doi:10.1208/s12249-016-0521-3

4. Haase AM, Gregersen T, Christensen LA, et al. Regional gastrointestinal transit times in severe ulcerative colitis. Neurogastroenterology & Motility. 2016;28(2):217-224.

Advocating for the Specialized Care You Need: Reflections on Mount Sinai’s IBD Clinic

Recently, I’ve started receiving care from the Susan and Leonard Feinstein Inflammatory Bowel Disease Clinical Center at Mount Sinai. This was my first time visiting an IBD-specific clinic, ever. Prior to visiting Mount Sinai, I was lucky if there was a gastroenterologist or a colorectal specialist on call at my local hospital. 

On my most recent visit to the IBD Clinic for a post-operation appointment, I thought I’d reflect on what made this center so special, especially during the COVID-19 era. 

Post-surgery for an internal fistula -- feeling better already!

In light of the pandemic, the process for being admitted and seen (at any hospital!) has been streamlined into a tighter and safer protocol. With hand sanitizer stops at nearly every corner, I noticed that Mount Sinai took a heightened level of precaution than any other facility I had been in. Every doctor, nurse, and staff member had a face shield in addition to their masks, with some going as far as to don Bouffant caps.

Beyond the COVID-19 precautions, however, I would like to speak to the deeper and more important differences at this clinic -- the unspoken sense of solidarity between both patients and doctors alike. To have an entire facility devoted to this condition, a chronic illness shared by millions of Americans nationwide, means that there is a lack of cause to explain yourself. Everyone in the room is deeply familiar with the forms of IBD, along with all the embarrassing and critical details that few others are willing to talk about in their entirety. 

The waiting room at the Mount Sinai IBD Center is all socially distanced!

This plaque, hung on the entryway of the floorwide clinic, is perhaps one of my favorite parts of the IBD Center. It’s a reminder of how fortunate we are, as young adults with IBD, to be treated in a time where our condition has been identified and researched, nevertheless with a name and prognosis. It is a strange feeling, indeed, to know that the work and medical achievements of this doctor (and his name!) has forever changed my life. 

A plaque memorializing Dr. Burrill Crohn at the Mount Sinai IBD Center.

Of course, I would be remiss not to acknowledge how incredibly fortunate I am to live in the vicinity of this clinic. To have access to such a clinic with a focus on IBD in and of itself is a privilege, one that many Americans and patients are not so lucky to receive. I’m duly compelled, however, to point out how lacking our healthcare system is, especially for those suffering with chronic illnesses. As someone who was diagnosed with Crohn’s disease in the summer of 2020, a time when the SARS-CoV-2 virus revealed the greatest inequities and vast underpreparedness of American healthcare, I’ve come to meet, learn about, and further appreciate the frontline and essential workers, who are simply making the most of what they’ve got. 

Although it took me months to find the right team of doctors and healthcare professionals, I learned that it was alright, and at times, even necessary, for me to ask for more specialized degrees of care. An important lesson in my brief yet transformative journey with IBD: don’t be afraid to advocate for the specialized care that you need. 

Reflections: The Importance of Advocacy for IBD

It’s a little strange to title this article ‘Reflections,’ because IBD is unique in that it’s always ongoing, with nothing to really jump over and look back on to reflect; with the journey still very much running, our reflections are inbuilt into it.

 As I write this, I’ve been in remission from ulcerative colitis for more than a year. From the time I was accepted to be a CCYAN fellow to now, I have already been through a rollercoaster of new emotions: from immense gratitude and relief that I am finally a fellow of a network that I closely followed for several months to staggering self-doubt about whether I can truly do this opportunity justice. While poles apart, my feelings of gratitude and self-doubt and the largeness of the two do stem from the same root. After I was diagnosed with UC at the age of 19, I desperately needed to know more people who faced the same struggles. With little else to focus on in those starting years, hope would glimmer every time I found out about a famous personality or someone I knew who opened up about their chronic illnesses.

 The way an invisible chronic illness creeps up on young adults is very much like a thief breaking in your house when you’re asleep and stealing things that don’t seem so valuable at first sight but without which you can’t really survive (like all your dishes). As young adults, we are so entitled toward our bodies and organs functioning properly that there’s no way to prepare or even know you will be impacted and when you do, people have very strong opinions on what you could have done to avoid it. And if, like some organs, dishes weren’t replaceable and the upkeep of the damages was constant, the last thing anyone would want is to deal with the struggle alone and keep it private. At least that’s how I felt. As soon as I was diagnosed, I let everyone around me know mostly everything except for the “impolite” specifics. Sometimes if the gravity of my situation wasn’t acknowledged, I would push to reveal the impolite specifics too. Concurrent to my health challenges, I was still also learning aspects of a broad society I had entered just two years before I got UC. As I rushed to speak and be heard, I realized, through the fear of my family and the discomfort of peers and friends, just how closed this society is towards these things.

When there are no voices for something that drastically alters every aspect of your life, it feels as though you’ve been dropped off to a completely new city with no maps for guidance. Maps are important for not only getting you from point A to point B, but also giving you a sense of orientation to gauge where you are with respect to everything around you. No voices = no maps. By far, in India today, invisible illnesses not only lack visibility in patients' external bodies, but also in national and private datasets, policies, and advocacy. This leaves patients disorientated and vulnerable to quackery (health fraud), which results in the loss of crucial time, finances, and deterioration of mental health (with the ups and downs of new hope and disappointment).

If the silence around personal disturbances was anything to go by, then I did not do a very good job of fitting in to my society as I always took the opportunity to talk about what I was going through even when I realized with passing time that it wasn’t always welcome or understood completely. I thought I should speak up all the more, because if no one does, who will vouch for me? This casual monologue took greater form in my first experience of being at a public hospital in my city. By that time, I had scoured the internet for people like me, experiences like mine, unique symptoms like mine, etc. I had come to recognize some feelings that came as a by-product of my illness through Hank Green’s videos on YouTube, and that the illness was bigger than me and my doctors (who only focused on the strict textbook aspects of IBD). My mom and brother very supportively drove and accompanied me for my sigmoidoscopy and I even got to sit as I waited for my turn. Waiting for countless hours after the scheduled time of my appointment, I was busy drowning in my pond of self-pity. When I heard a young lady slightly older than me was invited to go before me, I was very irritated and urged my mom to leave and reschedule. My experienced mother knew better. As I waited, I could hear the conversation between the young patient and the doctors in the room next door. She was a daily wage worker and her grumbles about missing work, her stomach pain (due to which she tilted sideways when she walked) and the tedious hours she spent waiting for her turn followed her into the room. The doctors didn’t indulge her in any sympathy, but rather curtly started the process. I wondered out loud why they hadn’t offered her a sedative – whenever I was asked, I always thought what a preposterous thing to ask when the process was so intrusive and uncomfortable. It was because she was alone and needed to hear the doctor’s findings and, of course, had to head back home alone. Even in my miserable state, that struck something in me. Her yells and shouts during the process, and the surrounding patients’ aloofness painted a picture so bleak, I was forced to look beyond my situation and recognize that despair like mine was still placed high on privilege. Granted that sigmoidoscopies are not the most pleasant of processes to go through or even prepare for, her shouts seemed out of place. I gathered it was more of a release from the anxiety of being alone and in such a vulnerable position with no emotional support. It took me back to a brief, mostly one-sided exchange she and I had before she was called in. From the little I understood as she spoke rapidly in her dialect, she had absolutely no understanding of the formalities of the prep that had to be taken and, more worryingly, the seriousness of her illness. She had two kids she had to care for, and she came alone because her husband was a daily wage worker who could not miss work especially since she was missing work that day too. She complained to me about the high prices of prep, all the days she had missed getting tests done and scheduling and rescheduling appointments in a government hospital, her appetite loss due to nausea and how she couldn’t perform her labor-intensive work as efficiently. After she limped out of her session, I thought of the sheer population of people like her in India.

Ever since that episode, I started thinking beyond my illness and what I could do to help the numberless amount of people in the same boat as the young woman. To start helping, the first step is to get a clear picture of how many people are impacted by IBD, which is frustratingly not available nor acknowledged anywhere in India. I am grateful, therefore, that I found CCYAN as an international platform for advocacy. Advocacy would hopefully enable data collection somewhere down the line. However, sometimes the mountain looks too big to climb; at this moment, we are right at the bottom and there are many things to do. Sometimes I think of all the people suffering from IBD in India, and how many struggles go undiscovered due to health illiteracy, digital gaps, doctor unavailability, and expensive medication, etc. Now more than ever, as cases of autoimmune disease rise across the world, there needs to be a prominent force of advocacy for IBD in India, so that datasets can be recorded and informed policies can be formed. The innumerable people who struggle already for a living should not be further hindered in their struggle for support, information or resources in this regard.

How Toxic Productivity Can Affect Chronic Illness

“The grind never stops” is a quote I’m sure all older gen-z and younger millennials have heard. Hustle culture is like the monster hiding under our beds just waiting to attack us the moment we dangle our foot off the bed. It’s the scary email we try to avoid, but eventually have to acknowledge is there. Our society places a great amount of pressure, on our generation specifically, to work hard and constantly strive for a lifestyle in which we are operating at an “optimal level”. This is deemed as success and this version of success should always be at the forefront of our minds and influence all decision making. Participating in this hyper productive hustle culture is difficult enough for the average person to achieve, but what does it look like for people that live with chronic illness? 

To put it simply, living with chronic illness(es) is hard. Personally, it is the most difficult thing I have ever experienced. With symptoms like chronic fatigue, anemia, and anxiety etc., paired with frequent doctor's appointments and stigma, one could imagine that it is virtually impossible for chronically ill people to participate in hustle culture. Unfortunately, being in this generation makes escaping from the plague of toxic productivity quite difficult. Growing up we have all heard the stories of the business person working 60+ hours a week to bring his dreams to fruition. This mentality has influenced our entire generation. Working hard should always produce tangible results, right? Well, not exactly. As someone that lives with IBD, overworking myself can have dire consequences. Stress and anxiety are common triggers for people living with IBD, so it can be exhausting to focus on extracurriculars, staying social, maintaining good grades, and overall performing “optimally” while you’re inches away from a flare up. Our culture’s ingrained toxic productivity can be seen as the genesis of this behavior. I regularly catch myself being filled with disappointment that my illness prevents me from working at the capacity that I deem as optimal. Blaming myself for the pressures that our society puts on this generation only adds fuel to the fire, but never addresses the true issue, which is our ingrained idea of hustle culture. 

As young chronically ill people, we must stay aware about never pushing our boundaries and our illnesses in the name of productivity. Productivity is a wolf in sheep’s clothing; it seems innocent enough until it comes and bites us, and that bite for many of us is a flare. It is never a moral failing if you aren't able to operate at the same capacity as your pre-diagnosed self or other able bodied individuals. As chronically ill people, we have so many unique challenges that we must acknowledge and honor. Here is a metaphor that I often remind myself of: 

“We are all running a race, and some people are completing laps in 7 minutes, and others are completing laps in 20 minutes. Some may have to stop to breathe, sit and take a brief rest, or even leave to grab water, but the timing doesn't matter, the effort and intention does. All effort is valid.”

In the metaphor above, the race represents toxic productivity and the one’s completing the laps in 20 minutes who have to frequently stop represents chronically ill people. Giving into the pressures of hustle culture and toxic productivity will only reinforce the cycle. So, for the college student that lives with IBD or other chronic illnesses, such as myself, who is putting excess amounts of pressure on themselves to excel in every facet of life, try to be conscious of allowing yourself the space to rest and recharge. “Rise and grind'' is hard to do when the rising part is the issue. Glamorizing and internalizing the generational curse that is hustle culture and toxic productivity can cause irreparable harm to ourselves. Remember, work does not equal self worth. 

So, when you’re in bed trying to get rest and all of your responsibilities and the ghosts of toxic productivity are whispering in your ear, try your hardest to ignore those voices, turn the other direction, and get that well deserved rest. 

Intestine Resection Experience in an IBD Patient

Many individuals who face inflammatory bowel disease will require surgery at some point throughout their lifetime. There are numerous reasons why an individual may need surgery such as abscesses, fistulas, scar tissue, active disease, perforations and many more ailments. Through my personal experience, I would like to share some tips to help you prepare for your experience with intestine resection surgery. 

My intestine resection took place during the month of June in 2020 due to scar tissue narrowing my ileum, as well as some remaining active inflammation. During surgery, my ileum and a section of my large intestine were removed and my small intestine was then reconnected to my large intestine through a laparoscopic procedure. Enduring a surgery during the COVID-19 pandemic led me to experience a whirlwind of emotions. To begin, my original surgery date of May 2020 was postponed; however I was lucky to be able to receive it in June. During this time, hospitals in Ontario prohibited any visitors for adult patients, so unfortunately I was unable to have any visitors during my hospital stay of four days. I was so incredibly nervous to undergo a major surgery for the first time and knowing that I wouldn’t have any in-person contact with my loved ones, made the experience even more frightening. I knew that I would have to be my own advocate while in such a vulnerable position, a daunting feeling that made me quite nervous. Despite the fact I had many fears, I am happy I underwent surgery. I have recovered and continue to feel better than ever. During my hospital stay, I was taken care of by my colorectal surgeon and a wonderful team of nurses, and although I couldn’t wait to return home, I felt comfortable and secure while recovering in the hospital. 

Receiving a surgery as serious as an intestine resection can seem terrifying, and trust me - I was terrified. To ease my mind and fill me with the confidence I needed to undergo this procedure, I fully immersed myself in taking great care of my physical and mental health. Physically, I made it a priority to get extra sleep, stretch often, go for walks when my body had enough energy, and made sure that I was eating nourishing foods. Mentally, I talked about my fears with my medical teams and loved ones, saw a therapist to learn coping techniques and made it a priority to journal daily. I also carefully and strategically packed a hospital bag with items that I knew would bring me comfort and make my hospital stay as easy as possible. Below are the items that I used daily during my stay.

Hospital Bag Check-List:

• Night gowns or oversized T-shirts (pack comfy clothes that don’t put pressure on your abdomen) 

• Loose underwear 

• Extension cord and chargers for phone 

• Face wipes (it will be hard to shower!) 

• 3-ply toilet paper (hospital 1-ply toilet paper in the WORST) 

• Stuffed animal to cuddle 

• Cozy blanket and pillow case  

• Easy to put on slippers (you won’t be able to bend down and they are great for walking the halls) 

• Perishable snacks if you require a special diet (or don’t like hospital food) 

• Anything else that will bring you comfort or joy
  

Before my surgery, I was searching everywhere online to gain insight on what my hospital experience might be like and I was unable to find many resources. I hope by sharing my personal experience in an Ontario hospital during the COVID-19 pandemic will provide comfort and ease the nerves of other IBD warriors going through a similar experience.

The Day Before Surgery: 

Remember the prep before colonoscopies? She’s back! The prep instructions I received were extremely similar to colonoscopy laxative prep, along with a large dose of antibiotics. Your medical team may prescribe you something similar or different. Either way, you’ve got this! 

Hospital Check-In:

After arriving at the hospital and checking in, I was brought to a change room where I was asked to change into a gown and check my suitcase. After I had changed, I was brought to a pre-operation room where the intravenous was given. My biggest piece of advice while going through all of these steps leading up to the surgery is to express how you are feeling to your nurse and medical team. I was feeling extremely uneasy and expressed these feelings to my nurse and this prompted her to request an anti-anxiety medication from the anesthesiologist that I could take prior to walking into the operating room. Once in the operating room, I received an epidural. I was personally terrified of receiving an epidural, but I experienced zero pain from the needle! After that, it was easy. I was quickly put to sleep and before I knew it the surgery was done!

After Surgery:

Upon waking up, I felt extremely tired and out of it. I continued to sleep for hours until the nurses woke me up. They encouraged me to try to stand up and use the washroom to empty my bladder. Due to the epidural and medications I received, I felt minimal pain and my legs remained numb for a few hours. Although I did not feel as if I was in pain, I could make out feelings of soreness within my abdomen. Afterwards, I was left to rest and was allowed to start drinking fluids. My medical team encouraged me to eat the next day and I brought snacks for this specific reason. 

The first three days after surgery were the worst for me in terms of pain. As someone with IBD, I was accustomed to experiencing severe pain and I was able to control this pain with only Tylenol. I’ve previously been prescribed narcotics to control the pain associated with my IBD flares, so only needing Tylenol was a win in my books! My surgeon cleared me the day after surgery to begin walking the halls and moving my body. Walking was exhausting and caused me pain but it truly helped out a lot with my recovery. I was only able to stand and walk hunched over to avoid putting pressure on my abdomen which I still can’t determine whether my mind was protecting my body or if I was really unable to stand straight. This continued for about a week and each day I was able to stand up a little taller.

Returning Home:

Once I was cleared to leave the hospital, I returned to the comforts of home where I was able to have my family care for me. Stairs were unbelievably challenging and I needed support to get up and down. I was extremely exhausted for a couple weeks post-surgery and majorly prioritized rest and recovery. My biggest advice is to have a caretaker for your first few days back at home, to help you get in and out of bed, cook meals, and shower. If you are going to be alone, sleeping on the main floor and pre-making meals before surgery would be extremely beneficial to ensure you have easy access to nourishing meals. 

I found it extremely difficult to get in and out of bed - I never realized just how much I use my abs! I recommend setting up a sturdy piece of furniture by your bed, such as a chair or side table, to use to lift yourself up and out of bed with. I also found that sleeping in an upright position was much more comfortable, putting less pressure on my abdomen, causing me to stack my bed with pillows. 

Please remember, it can take some time for your body to adjust to the surgery and notice results. Since I had a narrow ileum that caused blockages and poor digestion, I thought I would immediately have better digestion after surgery. My digestion is a thousand times better as I write this, but it took about a month for me to truly notice any of the improvements and benefits from the surgery and continued to notice additional improvements months following. During this time of recovery, each day my body continued to become stronger and more resilient. 

I hope my personal experience receiving an intestine resection will help those of you who are preparing to undergo your own intestine resection. My hope is the advice I have given you will help relieve your nerves and guide you through the process, by giving you a better idea of what to expect. As members of the IBD community, we are strong, courageous and resilient!