Don't Give Me Morphine!

By Peter Park, TX, USA

Like a knife in my gut, I feel the pain in my belly twist and turn inside of me. It’s midnight and I shout from the pain. I’m in my second year of medical school and I wonder if this is going to be the rest of my life. I start to cry because I know how this night will go. Another to the Emergency Room (ER). Another chance to defend my case. Another plea to doctors and staff to say, “my pain is real”. 

It started when I was 16 when the pain first began. It would follow the same pattern every time. I would be under a lot of stress from an important test, a breakup, or family issues. Then suddenly within a few hours, I would develop severe pain, and then no bowel movements for several days. First time I went to the ER, I was diagnosed with small bowel obstruction. They would stick the dreaded nasogastric (NG) tube from my nose to my throat. Give me some morphine. Then we wait for the first bowel movement. Go home after some intravenous (IV) fluids and call it a day. Doctors said it was a one-time thing at first. Then when I kept coming back with the same pain, they suspected me of opioid use.

From then on, quarterly trips to the ER in high school. I suddenly became an emergency regular. My favorite cocktail: IV saline, an NG tube, and a vial of morphine. I would be out in a few days. This went on for nearly ten years. Some diagnostic workup including abdominal CTs/MRIs, endoscopies, colonoscopies, small capsule endoscopy pill studies, balloon gastroenteroscopy with biopsies. All for “indeterminate”or “inconclusive” findings. For years, I would push for myself suspecting I had inflammatory bowel disease (IBD), Meckel’s diverticulum, complicated irritable bowel syndrome (IBS) or a whole differential of items to pursue. Still, I would be met with, “what’s your drug history, again?”

But this time, I know it’ll be different. I mean, I am a medical student now. I have presented my patients to doctors before. Now as the patient, I feel ready to present my case. 

After waiting in the ER for several hours, I am checked in and situated in a room in the ER. Still in severe pain, the ER nurse and I go over my history, symptoms, medications, social history, etc. Then, I ask for something for the pain. I can’t bear it. The ER nurse looks back and says “Let me ask approval from the doc for morphine”. 

Medical knowledge rushes into my head with a fact stating, opioids (i.e. morphine) cause constipation. Don’t take morphine when your bowel is obstructed! 

I turn to the nurse and tell him, “Please don’t give me morphine. I need a strong Tylenol or Tramadol. Just don’t give me an opioid.” And I will never forget the look he gave me, stared at me in the eyes and said, 

“All we have is morphine. Take it or leave it”

What? 

I’m suddenly so confused. I’ve worked in ERs before and I know what he’s saying is not true. Every neuron in my brain is fighting on what to say between the medical knowledge of other non-opioid alternatives to the supply and demand of medications that could allow for this situation to reasonably happen. Stuck between a stricture in my stomach and ever growing imposter syndrome, I cave and submit.

“Fine just give me whatever you have”

Following stabilization, I stayed in the hospital for a total of five days, where the last three days the whole medical team was just waiting for me to pass a bowel movement before discharge. So what if I had to stay in the hospital a few more days, who cares? 

And you would be right. The outcome didn’t affect my life in the grand scheme of things, but what I cared more about was the lesson I took away which was that:

Knowledge is power until you’re powerless. 

That previous system did not ever officially diagnose me with Crohn’s disease. In fact, I went about my own way to seek out two different Gastroenterologists from two different hospital networks to compare different opinions, run multiple different tests, and was finally diagnosed almost a year after my last emergency room visit.

Now, I am stable on a biologic and have not been in the emergency room for over a year. My final takeaway is this: Don't take no for an answer when it’s about your medical health. If you're confused, speak up. The only one that suffers from your silence is you, so stand up for yourself.

Peter Park is a 4th year medical student at TCU Burnett School of Medicine. He is pursuing Psychiatry and set to match in 2025 with hopes of treating mental health in patients with chronic disease.

Featured photo by Pixabay.

My Leadership Journey with IBD: It’s All About Mindset

By Dr. Fasika Teferra (Ethiopia)

I am a person living with Crohn’s Disease. It has taken me a long time to accept and learn to live with the condition, and through that time, I realized that I had a passion to serve the community. I had always been told the only institution that does good is a nonprofit, which was what pushed me to pursue one. I am thankful for the journey and all the life experiences that came with it.

Dr. Fasika Teferra featured in Lights Camera Crohns: An Unobstructed view in March 2021. Click the image to visit the article.

Being a co-founder of a nonprofit working in the IBD sector meant a lot to me, IBD patients, and the community in general. Since IBD had been assumed as rare in our country, IBD patients found comfort in knowing that there is an organization dedicated solely to increasing awareness to the condition. It also helped me to sharpen my leadership, communication and many other skills as I was the only one in the public talking about my condition. It also meant a lot for the community in general as I got feedback from many other people living with other noncommunicable diseases to see if they can replicate my path and raise awareness about their conditions as well! I had such a great impact that it shocked many to hear that I resigned 3 years into this work.

As I was starting out, I made a commitment to myself to create some type of ground work before I even attempt to apply for a grant. My reasoning was that since there is virtually no data on the condition and no one coming forward saying they had IBD, I believed I had to have a track record of projects and impact to convince the grant makers. In my mind, since those around me didn’t even grasp what IBD was, how can an institution support my vision for the IBD community? It had been so stigmatized that it took me well over two years to even get people to join our virtual community. Almost 3 years of full time service for this cause helped me learn a lot of things, especially when it came to grants and community work.

Dr. Fasika Teferra featured in The Guardian in October 2022. Article by Saeed Kamali Dehghan. Click on the image to visit the article.

From my perspective, I believe I took the right path as I was starting out. But as time went by, I realized how hard it was to receive any funding to local grassroots organizations. For the most part, there was a need for data as proof of the number of people living with IBD (rightfully so), but there needed to be some form of financial support to conduct that research. I was also introduced to the term social enterprise in the middle of my journey. Having worked with my husband in growing his business, I realized that it is not just nonprofits that do good in the community, and that is is all about mindset.

I would not have changed anything if I were to go back in time. I think my time in the nonprofit sector has taught me so much in terms of resource utilization and the skill to craft services tailored to the community’s need. After asking all the relevant offices, I have learned that there is no special license for social enterprise. After speaking to a couple of social entrepreneurs, I realized that social entrepreneurship is nothing but a mindset, atleast in my country. Having gone through the challenges of financial support for the organization while working full time as a volunteer for 3 years, I understand that it is now time to use my resources to create a system where I can multiply and triple what I have so I can be one of the local donors to this and other initiatives in Ethiopia.

I think being a first-time mom, being in remission, and having a strong desire to be a change maker in the healthcare system in Ethiopia has made me sit down and re-think a lot of things. Time and energy are resources that are precious in my opinion, and recalibrating those to maximize my impact in my community was crucial. Most don’t understand my decision, but that is okay. I believe that passion and vision mature and take different routes than anticipated, and I can only show the vision I have in my mind by bringing it to life. Although it is multifaceted, I have already taken the first step, and is almost ready for implementation. It has been a passion of mine to work on health literacy, but doing it in a way that is sustainable and most impactful had been a mystery to me until recently. I will be sharing my initiative in detail in the next article as it might be modified and replicated in other parts of the world.

Reflecting on My Journey as a Patient Advocate

By Varada Srivastava from India

I notice a common thread running through my life that began with some of my earliest memories
as I consider the road that led me to pursue patient advocacy. My advocacy work began in 2020
after COVID-19 struck, despite the fact that I was diagnosed with Crohn's disease at the age of 15 in
2015. Patient advocacy is something I was first introduced to thanks to the blog of Natalie
Hayden. She's a former news anchor and author of the blog, “Lights Camera Crohn’s”.

Starting a support group for people with chronic illnesses at my university was the first
project I worked on, and it was one of the most fulfilling experiences of my life. My
previously depressing and challenging diagnosis experiences suddenly had a new silver
lining. I was able to help others who had just received a diagnosis, just as I had hoped
someone would be able to help me.

While doing more research on the patient advocacy movement online, I came across
multiple organizations supporting and promoting it. One of those organizations was the Crohn’s and Colitis Young Adults Network. I decided to apply for the CCYAN fellowship and it was one of the best decisions I've ever made. After encountering several medical professionals and patient advocates during my time with this organization, I have come to the realization that patients frequently take
charge of healthcare movements - bringing crucial viewpoints to the frontline of the medical
profession. Working together benefits the industry as well as the patients. Motivated
patients are frequently passionate, outspoken, and organized in their pursuit of the medical
establishment's responses and the advancement of change. Social media has made it
feasible for many of these bigger conversations, and we need to pay attention.

On a personal level, I can now better manage my sickness and feel like I'm a member of a
community thanks to patient advocacy. Even if you've never met in person, you can find
solace in a friend who understands. Before it was offered to you, you might not have known
you needed it. I've come to terms with the fact that speaking up about my sickness and
seeking coping strategies is more beneficial than hiding it out of fear. Patient advocacy has
allowed me to work with excellent organizations and meet wonderful people. It has given
me a sense of purpose and helped me adopt a more optimistic perspective on my illness. I
intend to continue working toward it as long as I can.

Getting active in patient advocacy is possible in a variety of ways. There are several groups that
offer patients help and guidance as they begin their advocacy journey. Some of these include CCYAN, Generation Patient, and many support groups across various social media platforms.

Featured photo by Prateek Katyal from Pexels.

My Leadership Journey With IBD: Discovering the Leader Within Me

By Dr. Fasika Teferra (Ethiopia)

I had always loved giving back to my community. Volunteering and community service are what I had done ever since high school, and I loved making someone smile by even the smallest action. However, I had always seen myself as the benefactor and the people I served as the beneficiaries. Even though I loved seeing my impact made, we had very little in common, and the relationship never got past friendship. Although I loved the work I did, it was not something that kept me up at night or dedicated long hours. Working on improving the quality of life for IBD patients in Ethiopia however, was a totally different journey. Besides dedicating more than three years continuously, I am constantly thinking of new ideas and ways to do things differently.

During my final years of medical school, I hardly had any time for my own medical checkup let alone organize an in-person event. So, I decided that until I finish medical school, I would support one or two patients via phone.

I have never thought of myself as an innovator or problem solver. I don’t think people are born leaders, but I also have never understood how leaders were actually made. I remember the exact moment when I knew I had to step up and create an IBD space for people to get support but no idea how I would do it. I was 24 at the time, 4th year in medical school, and barely any networking experience. So, I tried to reach out to some gastroenterologists to tell them I wanted to do something to help other IBD patients. At the time, I myself did not know exactly what I wanted to do until one doctor articulated the word support group. With the realization that my ideas have one collective name, I turned to Google to see how other people lead support groups. I saw a lot of in-person meetings as part of activities which was discouraging to me. During my final years of medical school, I hardly had any time for my own medical checkup let alone organize an in-person event. So, I decided that until I finish medical school, I would support one or two patients via phone, and I notified my interest to a gastroenterologist in one of the biggest teaching hospitals in Ethiopia.

Fast forward to November 2019 when I attended a conference titled Women Leaders in Global Health. The conference came to my attention as I was googling people and projects related to what I wanted to do. It was also so convenient as it happened in Kigali, Rwanda where there were many Ethiopians living there that I had known. With the reasonable plane ticket price and securing a free place to stay, I somehow managed to get the weekend off and traveled for the conference. I remember feeling at home during the conference. There were so many experienced women in the global health field with so many accomplishments, and even though there was a gigantic gap in age and knowledge between me and most of the attendees, I felt like I belonged. I had never been exposed to such a variety of experts, and I soaked it all in. By the end of the conference, I had a clear vision of what I wanted to do.

I was confident enough in my vision, and with the diverse board of directors, I pulled in all the technical knowledge I would need to succeed.

I went back home, and in just over a month’s time, Crohn’s & Colitis Ethiopia Charitable Organization was established as a local nonprofit in Ethiopia with a vision of finding a cure for Inflammatory Bowel Diseases and a mission to improve the quality of life for patients living with IBD in Ethiopia through awareness creation, community support and much more. I had no background in Civic Society Organization leadership or anything in that lane, but I was confident enough in my vision, and with the diverse board of directors, I pulled in all the technical knowledge I would need to succeed. I am part of the community I serve now, and I intend to make my own health as well as others as optimal as I can. Whether it is in the nonprofit sector or the for-profit realm, I have learned that as long as the passion comes from the heart, anyone can make a difference in their surroundings. I have learned that there are smart ways to acquire all the years of knowledge I would need to lead properly, and that I don’t have to learn everything and know everything before I can take action. If you have an idea you think your community can benefit from, don’t doubt yourself and start with a small step. Rarely do great things happen overnight, but with consistency and persistence, anything is possible.

My Leadership Journey With IBD: Just Getting Started

By Dr. Fasika Teferra (Ethiopia)

I realized I needed to bring about change, as I was also affected by it. I couldn’t standby anymore and dared to be different, a trailblazer.

The day I decided to take the big step and start something that was unknown set me up for all the things I would do in the next few years. In school and at home, I was always taught to follow a certain person or structure. That was the definition of success for most people I know, including myself. There was no room for creativity, no room for exploration. We don’t choose our universities or our majors unless we pay to go to a private college. It was the same in healthcare. Although I was equipped with the knowledge to comprehend what my doctor was saying to me, I didn’t ask any questions. I was focused on fitting in the structure that was put before me instead of doing something different. I remember the day I found out there were other Ethiopians living with IBD. I was so happy to know I was not alone, but at the same time felt more alone. I wondered why there was no one talking about this condition, educating the community, and debunking myths. As I looked deeper into the lack of community, I started to see the gaps in the system. There was no community program to teach more about the condition, and medications seemed to be scarce. I saw that lack of knowledge is not just among the general population, but also among doctors and policymakers. I realized I needed to bring about change, as I was also affected by it. I couldn’t standby anymore and dared to be different, a trailblazer.

Like I said, I was never a risk-taker. After my diagnosis, I lived in fear for the first few years. Looking back, I can almost say I was not living at all. The season where I started to think about what I can do to solve problems is where my personal growth began. I never learned it in school, and I had no one to look up to at the time. As time went by, I realized I started to see potential opportunities where others might see unsolvable problems. When I am faced with a problem, I know I could protest, take it to the media, demand change, or I could lead by example and show how it can be done differently.

My leadership journey began a year before I founded the nonprofit Crohn’s & Colitis Ethiopia. My motto had always been to think big, start small, and act now. I used the limited resources I had to create something amazing. I had been so appreciative of the limited resources available because it helped me become innovative and fixed on finding solutions. I will be sharing what my big ideas are, how small I started, and what actions I took to help me advance my mission. I am doing this in the hopes of helping someone else reading this wondering if they can dare to not just think, but start something as bold as I did.

The Impact Patient Advocacy has had on my Life

By Varada Srivastava (India)

“Patient advocacy has helped me feel a part of a community as well as cope with my illness.”

Patient advocacy is something I was first introduced to thanks to the blog of Natalie Hayden. She's a former news anchor and author of the blog, “Lights Camera Crohn’s”. A person who suffers from chronic illness has to constantly face challenges since the time of diagnosis, which is excruciating, to say the least. Overcoming challenges faced throughout our journey, from diagnosis to daily life, is something many of us experience. In fact, it seems like I would break down every time I read her blogs. I spent the entire day reading her blog and crying.

Many people don't realize the severe impact that chronic illness occupies in the lives of patients. How much chronic illness impacts our daily lives. Fighting an invisible illness is often isolating and heartbreaking. I discovered Natalie Hayden’s blog probably 5 years after my diagnosis and that was the first time I did not feel alone with my disease. I acknowledged the importance of patient advocacy when I realized that if I had this support when I was diagnosed, perhaps I would not have felt so lost until coming to terms with my illness.

India faces a lot of misdiagnoses because of health illiteracy, lack of medical facilities, and expensive medications. The feedback IBD patients may get is also typically insensitive.

Having a system of people who help you and encourage you during difficult times is crucial. It's easy to feel alone when you're struggling on the sidelines. And when people don't reach out, it can be difficult to stay optimistic. When it comes to Crohn's disease, it is often referred to as debilitating. And that it is. However, I’d also argue that what's really debilitating is constantly worrying about the unexpected.

It is common for Crohn's disease and ulcerative colitis patients to have what is known as "psychophysical vulnerability." 1 Stress, emotional distress, and inadequate coping skills can all have a negative impact on how the disease progresses and decreases quality of life. 1 There are always two types of reactions you receive from people. Friends who support us and people who give unwanted advice.

For several years following an initial diagnosis, the number of procedures and medications can be overwhelming. Determining trigger foods and finding medications that work, are also among the significant challenges. Having a network of individuals who have gone through the same process is helpful to a great extent. It has been an invaluable experience for me to connect with young adults from around the world who face similar challenges.

Patient advocacy has helped me feel a part of a community as well as cope with my illness. If you can find a friend who understands, even if you've never met in person, you can gain comfort. It may be something you didn't know you needed it until it was offered to you. I have accepted that rather than being afraid to reveal my disease, it is more helpful to be vocal about it and get advice on how to cope with it.

As a result of this, starting a support group at my university and applying for the Crohn’s and Colitis Young Adult Network fellowship has been two of the most rewarding personal experiences in my life. Being able to help others with things I have struggled with, is an incredible opportunity for me. I'm very grateful to patient advocates for this reason. The awareness of autoimmune disorders is constantly growing all over the world and I feel blessed to be a part of it.

Featured photo by Polina Kovaleva on Pexels.

Resource: (1) Bonaz BL, Bernstein CN. Brain-gut interactions in inflammatory bowel disease. Gastroenterology. 2013; 144(1):36-49.

Storytelling for self-growth

By Fasika Teferra, M.D. (Ethiopia)

Have you ever wondered why someone shares their stories with strangers? Regardless of the outlets people use to tell their stories, we see storytelling get used as a catalyst for change. It is a tool that most change makers are using today; that was my initial motivation to start telling my story, until I learned the true potential of storytelling. I was just beginning my fourth year of medical school. With the stress of the upcoming qualifying exam and family moving away for work, I thought the abdominal pain I had started to experience was just anxiety. Although I am fully aware of Crohn’s Disease and its symptoms, I tried to get quick solutions to resolve the symptoms.

“Regardless of the outlets people use to tell their stories, we see storytelling get used as a catalyst for change.”

From a young age, I was told to pull myself together and not show vulnerability, which was why I suffered for eight months before getting my diagnosis. I knew what the disease was, the medications I needed to take, and that it was a chronic illness with no cure. But accepting that was one of the hardest things I ever had to do. A lot of factors played in truly accepting my diagnosis and make the decision to be more knowledgable as an IBD patient, but the major one was reading stories of other IBD patients. It opened up my mind to the possibility that I could lead a normal life. That was why I started to share my story, to be an inspiration to others.

“From a young age, I was told to pull myself together and not show vulnerability, which was why I suffered for eight months before getting my diagnosis.”

Living in Ethiopia, where most doctors state that IBD is rare, I knew I needed to speak up. I needed patients to know that they are not alone and I needed to communicate with my medical community that it is not so rare. I am glad I decided to be open about telling what I went through and how I am coping with IBD and it is not for the reasons you think. Sure, I am grateful to be able to make a change; I am happy my story is inspirational to other Ethiopians and non-Ethiopians alike. However, I am so thankful for what storytelling did for me.

“Through storytelling, I learned acceptance.”

I was not in remission when I started nor did I had a clue about managing IBD as a patient. I started only 2 years into my diagnosis and did not fully accept my diagnosis at the time. Through storytelling, I learned acceptance. As I shared my story more and more, it made me want to learn more about how to manage my condition. It also helped me step back and see how far I have come because telling my story means going back from the beginning and share the how, the why, the what of each and every detail. If there is one thing I want you to takeaway from this, it is that it doesn’t matter how much you know about something, speaking about your experience is not just so others can learn from you, it is a tool to aid in self-growth and reflection. Storytelling did not change my Crohn’s Disease diagnosis or all the hardship I faced, but the story helped me, the teller, transform and grow.

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.

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.

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.