Featured photo by Pixabay from Pexels.
This is the body I have today.
By: Laurel Dorr
cw: Body Image
When I was diagnosed with Crohn’s, I wasn’t prepared for all the ways it would change my relationship to my body. In particular, I didn’t know how it would affect my body image. When I was at my sickest, I dropped to my lowest weight since I was a teenager. As soon as I was diagnosed and started my first course of steroids, I lost about thirty pounds in as many days. I was getting sicker when I should have gotten better. Everyone seemed surprised that I was losing weight on prednisone. My weight stayed down for several months. I complained about it being a constant reminder of how unwell I was or how strange this new body felt. But beneath that, I was also relieved.
I didn’t have a very body-positive perspective to begin with, and I had struggled with my weight for years. Finally, the number on the scale had started to budge. Once I started to stabilize on my second biologic, I took my renewed appetite as a positive sign that my condition was improving… until my weight started to creep back up. And up. And up. Of course, I knew that I needed to eat more than a couple pieces of toast a day to get well. After more than a dozen iron infusions, I knew that I needed more nutrients to keep my anemia at bay. I knew this fuel was even clearing away my brain fog. However, I was also acutely aware of how differently my clothes fit. How the large-frame glasses I’d bought a year before looked goofily small on my steroid-swollen face. I made adjustments, with increasing frequency, to Zoom camera angles and selfies, trying to look more like my old self, and I avoided looking at pictures of myself on social media.
After being on prednisone for almost a year straight, I gained more than double the weight I’d lost at the beginning. Prednisone made me feel terrible in a lot of ways, but the way it altered my body image was the worst. Finally, I was put on a medication that allowed me to wean off—and for awhile, stay off—steroids. All of the not-myself-ness I’d been feeling melted away, almost immediately. My appetite became more manageable, and I had the energy to treat my body in healthier ways—better sleep, more movement. It didn’t happen overnight, but my body slowly began to feel more like it used to.
That doesn’t mean things are back to “normal,” whatever that means. Even if my weight continues to go down, my body simply isn’t the same. I described the extremes of my weight changes, but the reality is that it still fluctuates back and forth, as medication doses and other factors shift over time. I’m coming off yet another prednisone course now, and it might not be the last time I need it. Even if it is, weight fluctuations aren’t unusual, especially with Crohn’s disease—at least for now, these changes are relatively normal for me.
After all those months struggling with my body image, I’ve become more accepting of these changes, the inevitability of them. Some of it is out of my control, some of it isn’t; but none of it is a punishment. More importantly, I just don’t think about my body image as much anymore. This is the body I have today. Some days, it’s that simple. There are things I like about it, and things I don’t. Some days, those things change, or are more noticeable. But I’ve learned to look at it with less judgment. I buy new clothes when I need to, instead of squeezing into pieces I’m not comfortable in. I don’t avoid taking pictures with my friends, and I don’t cringe when I see unflattering angles of myself. Some days, I’m better at taking care of my body than others; but I also recognize that my weight is not a direct reflection of how “healthy” or “fit” I am at any given time. I’m allowed to live in this body, whatever it looks like. I deserve to enjoy this body. Right now, that’s enough.
De-Stressing to Your Best with IBD
Making the Most of Your Internship: How to Navigate Travel with Inflammatory Bowel Disease
Making the Most of Your Internship: How to Navigate Travel with Inflammatory Bowel Disease
By Karen Mancera
Imagine this: you've just landed in a new city, ready to start your dream internship. For many college students, traveling for an internship is an exciting opportunity to gain new skills, network with professionals, and explore a new city. But for those with inflammatory bowel disease (IBD), the thought of traveling to an unfamiliar place can be daunting and also presents unique challenges.
Thankfully, with the right preparation and planning, it's possible to manage your symptoms and make the most of your experience.
Planning ahead and preparing for the trip can begin as soon as you decide to begin applying for internships. I remember when I was contemplating whether or not to accept a research internship after my diagnosis. I felt overwhelmed and afraid about the uncertainty on how I would manage my health while I was away. Because I had just been diagnosed a few months prior, I didn’t have an established treatment yet which made me even more nervous about the process. Like in most Hispanic families, my parents were also hesitant about me going across the country for several months by myself. I still remember my mom’s main concern, ‘¿Y si te pasa algo y estamos aquí tan lejos?’ (What if something happens to you and we are here so far away).
After overcoming the initial fears and concerns about managing your health while away for an internship, it's important to take practical steps to ensure that your health needs are still being met.
Connect with your healthcare team.
I discussed my plans to travel with my gastroenterologist and he gave me useful information to move forward. He assured me that I could still pick up my prescriptions in a different state as long as I informed them which pharmacy was closest to me. I chose to use the same pharmacy company I was using at home so my information was already in their system and picking up my prescriptions was quick. I was also able to schedule a virtual appointment with him while I was away. Keep in mind the time zone you will be in when requesting an appointment, or you might accidentally schedule one at 6 am like me.
Communicate and advocate for yourself while navigating your internship.
You could share your diagnosis or simply some of your challenges that pertain to your role with your supervisor if you feel comfortable. Otherwise, you can discuss these details with the human resources office or research program coordinator. This can ensure that you receive the accommodations that you need. For example, for me this meant that the research coordinator prioritized finding 4-bedroom apartments with two bathrooms instead of one. She also took care of dietary needs for program-sponsored meals.
Maintain your self-care during your time away.
There were times when other students in my program planned to explore the city and I opted to stay back because I was not feeling well. I also tried to prioritize my diet by cooking my meals most of the time. Cooking can be tricky because you will need to get cookware if you don’t bring it with you. My roommates and I decided to purchase some of the basics and shared them. Shopping for groceries can also be challenging if you don’t have transportation, but look for alternatives in the area like store deliveries, public transportation, ridesharing options, and local stores. Another priority for me was exercise. Since my research internship was affiliated with a university, I had access to their recreational facilities, but you could find local gyms or safe areas to go for a walk.
Stay positive.
Remember that having IBD doesn't have to hold you back from achieving your career goals. With the right planning and preparation, you can successfully complete your internship and gain valuable experience for your future career.
Libidinal Energy of an Emotional Eater with Colitis
Libidinal Energy of an Emotional Eater with Colitis
Photo: Olga Kuraeva
By Tanisha Singh
In psychoanalysis, an area of great interest for me, the term ‘libido’ is used to describe the vital impulse/force or energy that directs all our action in a way. It is commonly misunderstood to refer to only a sexual instinct whereas it extends to basially every possible instinct we have, whether it is sleeping, waking up, eating food, working out, talking, working or not working, you name it. The reason we are able to function or operate and engage with our world at all is because there is a libidinal investment in things that propels us. To put it simply, desire for things helps us seek those, wakes us up in the morning, and gives meaning and purpose to our existence, and I would argue also a sense of direction in an otherwise whirlwind of impulses - both internal and external.
Growing up in a dysfunctional home turned me into an emotional eater. I would seek a lot of comfort in my chai and biscuit every evening. It soothed my nerves, eased my anxiety of being in a highly conflictual home. The sugar in the cookie gave me small bursts of happy hormones that were lacking through the day from being in an unhappy home. I don’t know if it was the depression or something else, but getting out of bed in the morning is a herculean task for me, from as far back as I can remember. The libidinal investment I had in food helped me out-do many anxious thoughts and feelings that would flood me upon waking up, lay on me like a weighted blanket, and help me get out of bed. I would bait myself out of bed saying, “Well, at least wake up for a soothing cup of chai and biscuits and the foods to follow.”
On being diagnosed with UC, and then understanding the role that diet plays in flare ups, I had to bring my emotional eating in control. My diet was pretty balanced and I wasn’t overeating or eating only processed unhealthy food. I enjoyed a nice home cooked meal just as much, and I enjoyed working out among other things. It was the occasional dessert that I used to self medicate from the existential pain that lives with me. I would argue it was a healthier (if not the healthiest) form of coping than drugs, or alcohol, that I could see myself being vulnerable to, given my mental health challenges. And so to have that taken away, especially because I manage my symptoms primarily through diet and herbal medicine, was crippling. (*A tiny caveat here would be to follow your doctor’s advice above all.)
I was crippled severely with anxiety and depressive feelings that I didn’t have my medicine for anymore. It took years for me to be able to develop another system of coping. And I, as a mental health practitioner, do believe that each needs to find their own way of a positive sort of coping, because life is crippling as it is. And to have a chronic illness affects not just the body but the mind, as the two are not separate. It affects your entire being.
And so I started to look for other forms of libidinal investments that I could make that would propel me forward in life, help me keep going and most importantly be able to wake up in the mornings. And such is the beauty and the complexity of the human psyche that it is full of multiple impulses shooting within us at all times, enticing us towards several different things. Desire! Such a wonderful source of energy if gathered in the right way! And so I focused on other aspects of my desire, other than food. An instinct just as powerful, for which we can go empty stomached for hours, gripped totally by the magic of artistic pursuit. There came dancing! It saved me. I decided to take it up seriously. Like really get into the nuances of this artform. And that became a propeller for me to wake up and continue living. All this frustrated libidinal energy around food that wasn’t finding its resolution was now being directed towards dancing, psychoanalysis, music, my love for relational equations (friendships, the romance within it), my pet rabbit, my work as a therapist, my love for clothes! I found plenty that emerged from the creative impulses within my psyche that are equally as pressing as our desire for food, water, or air.
It was my learning that the human psyche, the body-mind, is layered, and multifaceted, and so when life damaged one or more aspects of it, whether it is one’s health, or finances, or relational grief, there is always more within the psyche that is still bubbling for expression, for experience. And we can ooze with life still using those psychic impulses, the creative juices that continue to flow as you go through the trials and tribulations of the human existence. So rage till the dying of the light. May you find several libidinal investments to make that create a structure for positive coping for you.
“Do not go gentle into that good night, Old age should burn and rave at close of day; Rage, rage against the dying of the light.”
Cover photo by Kourosh Qaffari from Pexels
her name is Anemia
By: Divya Mehrish
The body is a vessel of ignominy—
words curl in my stomach like the roots
of baobabs. The body is like the bosom
of earth—a landscape of blood-red
summers and dented moons and carnivorous
flowers; a seasonal clock programmed
to blossom into April rainstorms and shed
its scales like a snake when autumn wind tickles
its throat; a seasonal clock programmed to hibernate
in the dead of winter. So, when my veins fade
below the surface of my skin and my fingertips
turn icy-blue and the world spins around my scalp
when I stand up too quickly as if my neck
itself were celestial enough to trace out its orbit,
I wonder if my body is simply going to sleep.
Perhaps I am a tree—destined to pine away
with the December wind just to be born again
alongside the darling buds of May. In this cycle
of rhythmic naptime, I have discovered that health
is as fleeting as a zephyr—I must catch it between
clenched teeth while I still can. I have discovered
illness is like rainfall—there is beauty in surrendering
to the sky and its tears and becoming one
with the earth, with the body. My rain is crystal
clear and gentle as moonshine yet saturated
with the desperate need to cling to me, to claim
what belongs in the tunnels of my capillaries. My rain—
her name is Anemia. But she has brought me closer
to myself, to my body, to this earth—this earth
that is like a wound we keep scratching, infiltrating,
hungry to know its limits. The way rain in eyes
become tears, become teardrops, become raindrops,
I keep falling and opening and reopening and leaking,
blood seeping out of my body through the shaft of my colon,
emptying out of the ewer of my inflamed intestines—
I am capable of flooding this earth with my very being.
But now I am here: standing in the rain with eyes wide
open, arms open to the sky, inhaling the deluge
and waiting for spring.
What I learned from being an IBD Camp Nurse
By: Linda Yoo
I decided I wanted to be a nurse in high school after experiencing the compassionate care of the nurses who took care of me while I was suffering my first IBD flare-up. As graduate school started to get tougher, I started to ponder on my “why” in life to grasp some motivation and excitement for the future. I was reminded of all the reasons I wanted to become a nurse, one of which was to impact the real lives of those with IBD through my talents and skills. Thus, during the summer of 2022, I decided to volunteer as a camp nurse at an IBD camp for children. Being a nurse with IBD taking care of children with IBD was an eye-opening experience, and the summer of 2022 was one I will never forget.
I was diagnosed with IBD in high school, and I remember how desperately I wanted to be “normal,” after my diagnosis. In some ways, I was in denial I had a chronic disease that required self-management. I was disinterested in learning about IBD and wanted to escape from the reality. Rather than trying to find ways to improve my symptoms or prevent flare-ups, I worked to hide the fact that I had an illness and was paranoid that others would find out. Looking back, it is almost laughable to think about the energy and time I spent hiding my IBD from others. But even to this day, I struggle with being open and light-hearted about my IBD. It has taken a long time to settle into my new “normal,” and share my experiences with strangers.
At camp, it was “normal” to have IBD. At camp, taking medications was “normal,” needing a break during activity was “normal,” and going to the bathroom was “normal.” During camp, I thought to myself, if I had these kinds of experiences as a kid, then may I would not have struggled so much trying to be “normal.” If I had seen the lives of others with IBD as a high schooler and seen others be open about their disease, maybe it would not be so difficult to share my story. I was so grateful that there is a safe place for children with IBD to be their full selves and not have to explain their IBD. Not only was camp filled with so much joy and laughter, but also so much understanding, love, and kindness. This past year, I look back at the memories I made at camp and cannot help but smile. The campers took care of each other, and me. They reminded me of their routines and regimes when it came to their medications and spent time with me to keep me company. As I watched them play, run, and have fun, I was able to see the importance of having a camp dedicated to children with IBD. The experience at camp last summer was part of my healing journey- a step closer to finding strength and joy in IBD.
'Coming Out': An IBD Story
‘Coming Out’
By: Tanisha Singh
As I embark upon this journey as a fellow, on day 1 of documenting my experiences and thoughts around my disease, I am visited by a series of thoughts about the one who has been diagnosed by this disease. A disease that is labeled chronic, incurable, and is systemic in how it alters and affects the physical, psychological, social aspects of one’s life. So, a disease with all its complexities. And so as I begin to write and speak, for some reason, I am reminded of all those who are not able to write or speak about it. To word the pain or to even contemplate it. I imagine, as well as know from my own experience of it, that to be able to even wrap your head around something so confounding, with very little known about it, whose origins or ends are not known fully, can be a challenge that never resolves. I wonder, even as I find myself at the threshold of wording my experience of it, if I or anyone, can ever fully come to terms with it, let alone speak to the world about it.
It’s disorienting to find oneself, one morning, with a massive uncertainty of a diagnosis as obscure as this one, that I wouldn’t be surprised if one is never able to accept it. The unknowability of what caused it, what will cure it, what way it will progress, immediately scratches the existential fear of uncertainty woven in all of human nature to manage whose effects we, as a collective, have create many moats: God, philosophy, religion or money, and even those haven’t been tall enough to barricade the terrors of not knowing. We find ourselves crippled with anxiety around our existence even in its most perfect forms, let alone one with an affliction such as this.
And so I wonder about those others, and those others parts in me too, that find it hard to come to terms with my reality as a patient of IBD, a very mysterious confounding illness sentenced for life. Any sentencing is a silencing of great magnitude, a finality that leaves little space for much to be said. And so one quiets down, puzzled by its uncertainty or ashamed by its rarity. There are great forces at play, that prevent one to fully integrate such a sentence into their lives and to still see a future.
And so I would imagine, how difficult it must be to own it. To speak about it, to tell the world, that you are a patient of a chronic, incurable, disease called Inflammatory Bowel Disease, affecting a very disavowed part of the body. Hidden, obscured, ‘abject’ (Kristeva, 1982) even in all its health, the bowels exist in the margins of the anatomical narrative of the human body. The self shies from it, even in all its health, how does one then come to speak of it in its dysfunction?
Abject art: ‘Chicken Knickers’ by Sarah Lucas
‘Abject’ The definition of abjection is "the state of being cast off." Julia Kristeva devised the intricate psychological, philosophical, and linguistic idea of the "abject" in her 1980 book Powers of Horror. She was influenced in part by the older views of Georges Bataille, a dissident surrealist and writer from France. Refuse and corpses, according to Kristeva, "show me what I permanently thrust aside in order to live." In reality, the term "abject" refers to all biological processes or physical characteristics that are viewed as impure or improper for discussion or show in public.
It makes me empathize with the difficulty of such a task, that each person with IBD faces everyday. To first accept it in all its unknowability, and then to integrate it as part of one’s reality, one’s self, because that body is not what we have, but what we must live everyday. In the words of Elizabeth Grosz (1996),
“We do not have a body in the same way that we have other objects. Being a body is something that we must come to accommodate physically or something that we must live” (Grosz E., 1996, p. 13).
There is a process of accommodating this reality, this diagnosis, that can, I believe, take its own time. Even a lifetime may not be enough. And I want to acknowledge, not only those who have chosen to speak about it, to tell others of this patienthood, but also those, who don’t speak about it, to themselves or to the world. Each is a valid response to this mammoth uncertainty that gnaws at our deepest insecurities as human beings: the fear of uncertainty, whose cure hasn’t been found even in a concept as mystiquely large as ‘god’ itself. I acknowledge the fear around accommodating an identity of chronic patienthood, and want to think of it as a very personal experience of ‘coming out,’ that each individual has the right to choose or not to choose.
Whatever your choice, may you not be silenced by the pain of coming to terms with the reality first of all, and then the burden of integrating it as your social identity in a stigmatized world, because part of what pain achieves is through its silencing, but rather have it be a guiltless personal choice of coming out or not.
‘Abject’
The definition of abjection is "the state of being cast off." Julia Kristeva devised the intricate psychological, philosophical, and linguistic idea of the "abject" in her 1980 book Powers of Horror. She was influenced in part by the older views of Georges Bataille, a dissident surrealist and writer from France. Refuse and corpses, according to Kristeva, "show me what I permanently thrust aside in order to live." In reality, the term "absject" refers to all biological processes or physical characteristics that are viewed as impure or improper for discussion or show in public.
References
Grosz, E. (1994). Volatil.ward a Corporeal Feminism (Theories of Representation and Difference) (First Edition). Indiana University Press.
Kristeva, Julia. Powers of Horror: An Essay on Abjection. Trans. Leon S. Roudiez. New York: Columbia UP, 1982.
Featured photo by Miguel Á. Padriñán from Pexels.
Can I be happy after a Crohn's diagnosis? I say, yes you can.
Can I be happy after a Crohn’s diagnosis? I say, yes you can.
By: Mahder Ayalew Bexabih
Crohn’s is one battle itself, but it helps me to win many other battles, for which I am grateful for.
For 6 years prior to my diagnosis, I vomitted almost every day, I had zero energy to do anything, I had a pessimistic mindset, and I didn't care about God. I thought he was the one who did this to me. That he caused the bad attitude towards myself and others, and filled my thoughts with pain, which became my everyday life. I can say my life was a mess.
Then I found a name for the underlying cause of most crises in my life.
Crohn’s disease.
Knowing that it is treatable gave me hope. It is not easy to think the future would be bright and the suffering would be over, but sometimes all we need is that spark to ignite the light and the positive within ourselves.
To my delight, I found a doctor who treats, not only my Gut, but also my mind and soul too. This year, I will come back with another article on how this amazing doctor helped me throughout my journey with Crohn's disease.
A few weeks after I started treatment, my body responded nicely. I started working out, helping family, and going to church. For me, I praise God, as my faith has been an important part of my journey, and that I saw the dawn after the darkest hours of my life.
Life after developing Crohn’s sometimes feels like selling ice cream in the winter. There were a couple of times that I stopped my treatment due to depression and financial problems too. But what matters is not getting lost in the bad days and getting back on track. Keeping it all together is a must.
Everything happens for a reason. Going through all the pain has helped me to be more understanding, patient, and empathetic towards others.
Now I do my best to do good to others, I am grateful for the good and bad that happened in my life. Now I know that it wasn’t all for nothing, there is a relief in knowing that you are standing where you are meant to be. Life is not all cupcakes and rainbows. If we truly had to live it, we may as well learn to take a lesson from the bad days too. I have a long road ahead of me in this fight and I will make sure I am prepared.
IBD patients can surely be happy if they see the good in the bad and the light at the end of the tunnel, because there is definitely a bright day ahead and a blessing for going through the darkness.
Our perception is what distinguishes a bad day from good ones.
Feature photo by Melissa from Pexels.
Navigating Healthcare Challenges and Attaining Empowerment
Navigating Healthcare Challenges and Attaining Empowerment
By: Karen Mancera
Living with inflammatory bowel disease (IBD) is challenging physically, emotionally, and financially. A shared experience among patients with chronic illnesses is the ongoing frustration with health insurance in the US, especially for low-income families. Alongside, the endless phone calls with doctors’ offices and billing departments, this becomes very overwhelming.
Having been born in a different country, the healthcare system in the US had always been a foreign concept to my family. It wasn’t until I faced IBD medical bills head-on, that I felt the same way about healthcare as I did about being a first-generation college student. I would call it something like being a “first-generation patient.”
Similar to how I navigated college on my own, I found great resources to help along the way. It is amazing that we are able to have direct online access to content, people, and organizations that help patients like us. The ability to join virtual support groups can also immensely improve our mental health by connecting with other patients. It is comforting to share your struggles with other people that have faced similar challenges and can offer their insight or moral support. Feelings of loneliness and isolation are not unusual, especially after a new diagnosis.
I remember when I woke up from my first colonoscopy. The distant conversation of the doctor with my mom. He waved around a pamphlet that he later handed to me. While I was still groggy, he gave me my diagnosis and some copies of the procedure before I went home. The whole interaction didn’t seem real until I began reading about IBD and ulcerative colitis later.
The word that stuck with me while researching IBD was incurable. It made me feel powerless. At that moment, I thought that my symptoms were just the beginning of something worse to come. What I didn’t know was that my diagnosis was going to influence many crucial decisions in the following months.
I received my diagnosis mid February of 2021, before a crucial deadline in April of this same year. Having applied to multiple doctoral programs, April 15th is the date that prospective graduate students have to decide which school to attend. Since I was applying to biomedical engineering programs, there was a wide range of research topics to choose from in different locations. Coincidentally, one of my options involved research on the human microbiome and its influence on IBD. Let’s say that opted for following my gut.
Because I now have a personal connection to my work in IBD, I have a deep appreciation for all of the new findings I read and hear about, that go beyond just my professional life. Being part of all of the efforts to understand this condition has helped me replace the feelings of powerlessness to feeling enthusiastic.
Navegando los desafíos medicos y logrando sentimientos de empoderamiento
Vivir con una enfermedad inflamatoria intestinal (EII), como la colitis ulcerosa, es un desafío físico, emocional y financiero. Una experiencia compartida entre los pacientes con enfermedades crónicas es la continua frustración con los seguros de salud en los EE. UU., especialmente para las familias de bajos ingresos. Junto con las interminables llamadas telefónicas con los consultorios médicos y los departamentos de facturación, esto se vuelve muy abrumador.
Habiendo nacido en un país diferente, el sistema de salud en los EE. UU. siempre había sido un concepto extraño para mi familia. No fue hasta que enfrenté mis costos medicos por mi condicion, que me sentí tan desinformada en el ambito médico al igual que en el ambito academico por ser una estudiante universitaria de primera generación*. Lo llamaría algo así como ser un “paciente de primera generación”.
De manera similar a como navegué la universidad por mi cuenta, encontré excelentes recursos. Es sorprendente que podamos tener acceso directo en línea a contenido, personas y organizaciones que ayudan a pacientes como nosotros. La capacidad de unirse a grupos de apoyo virtuales también puede mejorar enormemente nuestra salud mental al conectarse con otros pacientes. Es reconfortante compartir tus desafíos con otras personas que han enfrentado situaciones similares y pueden ofrecer su perspectiva o apoyo moral. Los sentimientos de soledad y aislamiento no son inusuales, especialmente después de un nuevo diagnóstico.
Recuerdo cuando me desperté de mi primera colonoscopia. La conversación lejana del doctor con mi mamá. Él agitó un folleto que luego me entregó. Mientras aún estaba mareada, me dio mi diagnóstico y algunas copias del procedimiento antes de irme a casa. Toda la interacción no parecía real hasta que comencé a leer sobre la colitis ulcerosa más tarde.
La palabra que se me quedó grabada mientras investigaba era incurable. Me hizo sentir impotente. En ese momento, pensé que mis síntomas eran solo el comienzo de algo peor por venir. Lo que no sabía era que mi diagnóstico iba a influir en muchas decisiones cruciales en los meses siguientes.
Recibí mi diagnóstico a mediados de febrero del 2021, antes de una fecha límite crucial en abril de este mismo año. Habiendo postulado a múltiples programas de doctorado, el 15 de abril es la fecha en que los futuros estudiantes de posgrado deben decidir a qué escuela asistir. Dado que estaba postulando a programas de ingeniería biomédica, había una amplia gama de temas de investigación para elegir en diferentes universidades. Coincidentemente, una de mis opciones involucraba la investigación del microbioma humano y su influencia en la EII.
Debido a que ahora tengo una conexión personal con mi trabajo, aprecio profundamente todos los nuevos hallazgos que leo y escucho, que van más allá de mi vida profesional. Ser parte de todos los esfuerzos para comprender esta condición me ha ayudado a reemplazar los sentimientos de impotencia por un sentimiento de entusiasmo.
*estudiante universitario de primera generación - cuando eres el primer miembro de tu familia en ir a la universidad
Featured Photo by Polina Kovaleva from Pexels.
Navegando los desafíos medicos y logrando sentimientos de empoderamiento
Navegando los desafíos medicos y logrando sentimientos de empoderamiento
Karen Mancera
Vivir con una enfermedad inflamatoria intestinal (EII), como la colitis ulcerosa, es un desafío físico, emocional y financiero. Una experiencia compartida entre los pacientes con enfermedades crónicas es la continua frustración con los seguros de salud en los EE. UU., especialmente para las familias de bajos ingresos. Junto con las interminables llamadas telefónicas con los consultorios médicos y los departamentos de facturación, esto se vuelve muy abrumador.
Habiendo nacido en un país diferente, el sistema de salud en los EE. UU. siempre había sido un concepto extraño para mi familia. No fue hasta que enfrenté mis costos medicos por mi condicion, que me sentí tan desinformada en el ambito médico al igual que en el ambito academico por ser una estudiante universitaria de primera generación*. Lo llamaría algo así como ser un “paciente de primera generación”.
De manera similar a como navegué la universidad por mi cuenta, encontré excelentes recursos. Es sorprendente que podamos tener acceso directo en línea a contenido, personas y organizaciones que ayudan a pacientes como nosotros. La capacidad de unirse a grupos de apoyo virtuales también puede mejorar enormemente nuestra salud mental al conectarse con otros pacientes. Es reconfortante compartir tus desafíos con otras personas que han enfrentado situaciones similares y pueden ofrecer su perspectiva o apoyo moral. Los sentimientos de soledad y aislamiento no son inusuales, especialmente después de un nuevo diagnóstico.
Recuerdo cuando me desperté de mi primera colonoscopia. La conversación lejana del doctor con mi mamá. Él agitó un folleto que luego me entregó. Mientras aún estaba mareada, me dio mi diagnóstico y algunas copias del procedimiento antes de irme a casa. Toda la interacción no parecía real hasta que comencé a leer sobre la colitis ulcerosa más tarde.
La palabra que se me quedó grabada mientras investigaba era incurable. Me hizo sentir impotente. En ese momento, pensé que mis síntomas eran solo el comienzo de algo peor por venir. Lo que no sabía era que mi diagnóstico iba a influir en muchas decisiones cruciales en los meses siguientes.
Recibí mi diagnóstico a mediados de febrero del 2021, antes de una fecha límite crucial en abril de este mismo año. Habiendo postulado a múltiples programas de doctorado, el 15 de abril es la fecha en que los futuros estudiantes de posgrado deben decidir a qué escuela asistir. Dado que estaba postulando a programas de ingeniería biomédica, había una amplia gama de temas de investigación para elegir en diferentes universidades. Coincidentemente, una de mis opciones involucraba la investigación del microbioma humano y su influencia en la EII.
Debido a que ahora tengo una conexión personal con mi trabajo, aprecio profundamente todos los nuevos hallazgos que leo y escucho, que van más allá de mi vida profesional. Ser parte de todos los esfuerzos para comprender esta condición me ha ayudado a reemplazar los sentimientos de impotencia por un sentimiento de entusiasmo.
*estudiante universitario de primera generación - cuando eres el primer miembro de tu familia en ir a la universidad
A Reflection on Remote Learning by a Graduate Student with IBD
By: Linda Yoo
I began graduate school in late 2020 during the coronavirus pandemic. Although I knew that online schooling would be used at the beginning of my PhD journey, I had no idea it would continue for nearly two years. Throughout high school and college, I had IBD related accommodations, such as taking bathroom breaks. These accommodations often left me missing portions of classes and sitting in areas that would not disturb others. Although my accommodations were never perfect, I could actively participate and enjoy school.
Before the pandemic, I thought that the traditional in-person classroom setting was the best place for learning. However, the pandemic completely changed my views on education. Even though online schooling came with some struggles, overall I was thriving in graduate school with remote learning. With online school, I could use my bathroom, take my own breaks, make lunch at home, and decompress in a place I had control over. In many ways, this gave me more options to create a learning environment that fit my needs. I was often able to watch recorded lectures over and listen in on lectures even during my breaks. My time attending school virtually proved to me that I could be as productive, if not more, in an environment that I felt was supportive and tailored to my needs. Although the pandemic gave me a newfound liking for virtual school, I acknowledge that this form of education is not suitable or easy for everyone. There was difficulty connecting and naturally forming relationships with others, and the college experience was restricted in terms of socializing with others. However, we tried our best to create virtual hangouts and support groups to build new friendships.
Post-pandemic, we are now in-person for classes, but we still utilize virtual meetings for research projects to collaborate with colleagues all around the country as well as locally. Virtual meetings often save time on the commute and allow for flexibility with childcare. As someone with IBD, virtual meetings often give me the security of being in my own home and decrease my anxiety about being in a new place where I need to search for the nearest bathroom. I find that virtual meetings are helpful for large seminars and lectures, as many individuals might simply be listening to one person. However in smaller groups, discussions can be less natural and stunted because only one person can speak at a time without overlap, and body language is restricted.
All in all, we need to embrace technology and the ability to provide education in various forms to accommodate different needs. Online schooling presents opportunities for equity within higher education. Particularly for students with disabilities, online schooling can provide many benefits that traditional classrooms might not be able to provide. Online schooling is not a new concept for higher education; many online resources were available before the pandemic that students used to supplement their learning. There needs to be a continued push to make education accessible and affordable for all, and online school can be a part of that solution. As someone with IBD, online schooling has opened my eyes to how technology could improve the current education system by creating supportive and accommodating learning environments.
Diary Entry Eight Years into my IBD Journey
By: Divya Mehrish
Dear Body,
For eight years now, I have lived between your swollen walls: suffocating in the heat of flares but also learning how to call these walls home, to relax into the space that exists between flares, between battles, in the dim-lit corridor between health and illness. Body, I am still learning how to support you, how to best take care of you, how to recognize you even when the war raging inside me forces me to relinquish all the energy I have, when everything within me feels dangerous and foreign. It was eight years ago, when I was diagnosed with ulcerative colitis, that I began to realize that my relationship with you would have to be closer than most relationships children usually need to carve out with their bodies. I knew that I would have to learn how to become more in tune with you, to be gentler with you, to coexist with you, to keep my ears open and listen to you with intention.
Eight years have elapsed, and I am still learning. I am still trying, every day, to strike this balance with you, to work together with you. Body, I want to apologize for all those times I have failed, and for all the times in the future when I will fail again. I want to say thank you for supporting me every step of the way, for never giving up on me, for sustaining me, for allowing me to continue my healing process, for shaping me into the resilient person I am today, for never giving up on me. This is a journey that we will always be embarking on, together, and I appreciate you for all that you have done for me.
There was a time when I resented you – when I dreamed of having an uncomplicated and straightforward body, one which would never suffer so young. But, I have grown to recognize that all the beautiful moments in my life have been made possible only by you, and even by the presence of those not-so-beautiful moments. And, I have grown to appreciate that there can be beauty in pain, in the experience of working through that pain, in becoming stronger from defeating that pain.
Body, it has taken me a while, but I am growing to love you. I am making a real effort to remain in the moment with you, to stay present, to bear witness to you. I know that you do the same for me. Body, I am proud of you. I am grateful to you for all that we have been through, together, and for all that we will continue to endure, to experience, to find joy in, to build a life out of. Body, I am growing to recognize that there exists no “you” and “me” in the relationship that we have developed with each other – I am learning to feel comfortable in the act of blurring these lines, in fully embodying you, in fully embodying myself. Thank you for waiting for me as I continue to make sense of you, of myself, of our journey.
Sincerely,
Divya
Finding (and Losing) the Narrative
By: Laurel Dorr
For many years, I didn’t have language for my illness. There was no diagnosis to dissect; I didn’t even tell anyone about my moderate symptoms, despite their increasing impact over the years. Language is how I process everything, so in retrospect, it makes sense that I couldn’t understand it myself. I wasn’t willing to seek out the words, to let it be real. The first time I spoke to a doctor about it, I could barely find words to explain what I was experiencing.
For years, I struggled to articulate with any precision or insight about my symptoms, even when they were severe. It’s like my mind shut off the part that connects my body to language. After diagnosis, however, I began to cling harder to language, to narrative. That structure felt essential to helping me make sense of this new diagnosis, this shape that had hardened years of ambiguous symptoms into something real.
Journaling was (and still is) one of the most effective tools for coping with my illness, especially early on. Even when anemia and malnutrition made it difficult for me to think in words, journaling helped me process what was happening to me, not only in my body, but in my emotional state as well. It helped me slowly pull myself back to language, even when it felt too flimsy to hold onto. Even now that my cognition has improved, the introspective skills I gained are helping me articulate my medical experiences a little more effectively.
Around the same time, I did an intensive study in college on creative nonfiction writing. Although the original goal of the project wasn’t related to my disease - and although I sometimes preferred to avoid writing about it - it did give me a space to creatively navigate this new experience. The sessions I spent bouncing the ideas off my (wonderful) professor, finding ways to make this deeply personal topic into something more like art, were some of the most valuable parts of my early recovery.
Despite all those ways of putting my illness into language, there are aspects of this disease that still escape narrative structure. For instance, how do you identify a “beginning” of an illness, when I spent years suffering before the major flare that led to diagnosis? More importantly, what does an “ending” look like with a chronic illness, particularly when even “remission” hasn’t looked the way I imagined?
I often think about higher meanings. Every time a medication fails, for instance, I remind myself that they have each served some purpose, making me better in some small (or not so small) way. That one got me out of a severe flare; the next one allowed me to stop taking steroids. Sometimes, though, those stories are harder to believe. At the end of the day, I’m still cycling through medications, still unsure how I’m going to feel in six months - or even next week. In this way, my illness has taught me something new about narrative: there isn’t always a tidy ending, or a hidden meaning. It’s okay if the story feels out of control sometimes. At other times, maybe it will feel like the pieces are finally fitting together, and that’s okay, too. Finding the narrative of your IBD journey can be helpful, even when some chapters are still unclear.
Chronically Ill and Chronically Out-of-Love
Chronically Ill and Chronically Out-of-Love
by Natasha Kacharia from the United States
When I was seven, I wanted to become a princess. Not for the reasons most girls wanted to become princesses: the pink fluffy gowns, the silver sparkling tiaras, the popularity, the power, and basically their entire life served on a silver platter. No, I wanted to become a princess because I wanted true love, and well that only seemed to happen in fairy tales.
Fifteen years later, I have not met my true love. Sometimes, I am not sure that I even believe in true love. I go on dates, and for the most part, the guys tend to be nice, but there is no spark. There is nothing special. They all seem interchangeable, replaceable. At first I was adamant that the guys were the problem, but the more dates that I go on, the more I realize that I am the issue.
I am emotionally distant.
My detachment is not purposeful. I binge watch these all-consuming relationships - Romeo and Juliet, Blair and Chuck, Harry and Sally - and more than anything, I want to be so deeply in love with someone that the idea of living without them makes it hard to breathe.
But I just cannot bring myself to care about the little things, such as who texts first, who my significant other talks too, that I used to obsess over in high school. And, it is not just the little things that I could care less about, it is the big ones as well. A long-term boyfriend cheated on me, and I broke up with him partially because of my pride and partially because it was the expected thing to do. My friends thought he broke my heart, but they did not know what I did: my heart was already broken. And, it was not broken by any guy or relationship. It cracked by watching my body attack itself. Then, it cracked even further watching my old life slip through the cracks. My body broke my heart.
No guy can hurt me because no matter their level of betrayal, it could not even begin to compare to the level of betrayal that I experience by simply looking at my reflection. So here I am, twenty-two-years-old, and I love the idea of being in love more than I have ever loved a guy himself.
Maybe, I have already met my true love. Maybe, I have not. I am not sure, but what I am sure about is that I need to learn to love myself, love my body for what it is, and what it provides before I am able to fall in love with someone else. I need to mend my broken heart because I may always be chronically ill, but I do not always have to be chronically-out-of-love.
“I need to mend my broken heart because I may always be chronically ill, but I do not always have to be chronically-out-of-love.”
Featured photo by Leah Vieantana from Pexels.
Reflecting Back on the CCYAN Fellowship
Reflecting Back on the CCYAN Fellowship
By Varada Srivastava from India
Through my therapist, I learned about the IBD patient advocate Natalie Hayden's blog. I stumbled upon an interview she had conducted with Chronically Honest, who manages an art account devoted to inflammatory bowel disease. While going through her posts I noticed she had reposted a piece about a conference for Health advocacy on Instagram. I discovered CCYAN while browsing the Instagram of the Health Advocacy Summit (now known as Generation Patient).
I was still new to the health advocacy arena. My only experience was volunteering at ORDI (Organisation of Rare diseases India) and starting a support group for people with chronic illnesses at my university - which was one of the most rewarding experiences of my life. My previously sad and difficult diagnosis experiences acquired a new silver lining all of a sudden.
Many people are unable to comprehend the seriousness of the condition and how much it affects our daily lives. Fighting an unseen chronic illness can feel heartbreaking and isolating. The lack of knowledge about IBD made it extremely challenging to live and get diagnosed. It's essential to have a support system of individuals you can turn to when you don't have the energy to get out of bed. When you're struggling while watching from the sidelines, it's easy to feel alone, and when no one offers to help, you start to wonder if your suffering is even important.
One of the best decisions I've ever made was to apply for the Crohn’s and Colitis Young Adults Network fellowship. I've learned that patients frequently lead healthcare movements, bringing important opinions to the forefront of the medical profession thanks to the numerous medical professionals and patient advocates I came into contact with during my time with this organization. Both the industry and the patients gain from collaboration. Motivated patients regularly pursue the reactions of the medical system and the progress of change with a zeal, passion, and organization. Patient advocacy not only made me feel like I was a part of a community, but it also helped me accept my illness. I've discovered that it's more beneficial to speak up and let others know that I have an illness rather than being afraid to admit it.
I'm really grateful that I had the chance to interact with patient advocates from numerous countries and engage with professionals in various areas of healthcare from psychology to experts in biomedical devices. Thanks to the outstanding work of patient advocates at CCYAN people are becoming more aware of how complicated IBD really is. I consider myself fortunate to be a part of it. I will always keep the lessons I learned during this fellowship close to my heart and will always be thankful for the wonderful friends I made this past year.
Featured photo by Simon Berger from Pexels.
The Pandemic Changed My Life... for the better
The pandemic changed my life… for the better
by Natasha Kacharia from the United States
If I got $1 for every time one of my peers said the pandemic robbed them of a year of their college experience, I would be a rich woman. Among college students laid a universal hatred over Zoom University. And, while the pandemic undoubtedly sucked for the world, for me, it was arguably one of the best things that could have happened. I want to preface that I never got COVID-19, and if I had, then maybe I would change my tune.
I spent August 2019 – the month before my freshman year of college – in and out of the emergency room. While I was diagnosed with ulcerative colitis (UC) my junior year of high school, my UC was mild. It was never ‘emergency room bad’ and definitely ‘cannot even digest water bad.’ I called Stanford up, asking if I could start college in the winter quarter instead of fall quarter for the 2019-2020 school year. As I was a freshman, they said no; if I wanted to take fall quarter off, then I had to take the entire year off, and at that time, it seemed like the worst possible scenario. Remember, pre-pandemic, a gap year had a certain taboo. So, I decided to pack to my bags and moved into freshman dorms with about 1000 over-eager freshman.
A week later I landed in the ER for joint pain.
You see, in high school, the maximum dosage of prednisone I was ever prescribed was 30 milligrams (mg). My freshman year of college was the first time that I was on 60 mg of prednisone. I did not know it at the time, but the higher dosage came with noticeable side effects.
While the prednisone worked wonders on the inflammation on my colon, it also did wonders on my day-to-day life. I woke up and 3 am; thus, I was constantly tired throughout the day. I could not stop eating, and I gained more weight than I could comprehend. Pimples graced my face. I thought I was going insane. It was not until my mom saw a picture of me and asked how much weight I had gained, I realized it was not in my head at all but rather reality. I felt that I was going insane and felt depressed at the same time. The worst part was that I had no one to talk too. My mom would simply comment on my weight gain and tell me to eat healthier; she did not understand the food cravings I would get. My dad thought I was brave for going to college with my UC; I was always the brave and strong one with him, and he would just placate me. My high school friends were off living their best lives. My sickness coupled with the short duration
of time that I attended Stanford meant that I did not have an established friend group. And
honestly even if I did have friends, my friends would not have known me, not really; they would
just have gotten to know ‘sick me.’
So, there I was, a month into the “best years of my life” in a new state, taking more meds than I could count, surrounded by joyful students, and yet I never felt more alone.
My life was in complete freefall.
But I could not leave. I was too ashamed. I spent my entire life working my ass off to get into a school like Stanford, so I kept telling myself that it would get better. Every sacrifice I made to get into Stanford had to mean something, so I stayed. I blamed my depression, my problems on prednisone. I read that depression is a potential side effect of prednisone. Yet, when January came, I was still depressed. If possible, I was more depressed.
Then the pandemic hit, and we were all sent back home.
The pandemic forced me to make the decision that I was too scared to make. It gave me
an escape from the noise. I needed a minute to regroup, to rethink. The pandemic gave me that. It
put everything in perspective.
I realized that I did not want to change the world; I just wanted to be happy. I just wanted
to be healthy.
Featured photo by Anna Shvets from Pexels.
Bittersweet Road to Recovery
By: Maalvika Bhuvansunder
Recovery is a word that can be seen as both, something positive and negative. On one hand, recovery signifies better times, better life ahead, and no more pain. However, it also reminds us of what we had to lose in the process, the reality that we had something we needed to recover from, and a lot of other things. Recovery is even scarier when we do not know if it would last long or if it is just the calm before the storm.
My already low self-esteem took an even more downward spiral.
During our journey of recovery, we might not be our best selves. There is a lot we might have given up and the loss feels more real when we are healthier. Post my surgery and remission I started comparing my journey with others and started realizing all the ways I have been lacking behind. My career was on hold for the two years that I was in a horrible flare, my master's grades were not as great due to my flares, and my social life was practically non-existent. My already low self-esteem took an even more downward spiral, which was surprising, as I had expected being in remission would help improve my self-esteem. What did not help were comments of people saying finally I would stop crying all the time or that at least now I can start having a career. I started comparing myself to those my age and started resenting myself for not being where they were. In this process, I was becoming a bitter person who was unhappy with others' success and was wallowing in self-pity.
A year ago I could not get out of bed or eat a single morsel of food. Now, I am healthier, able to eat what I love, and do things I have wanted to do.
What I forgot to realize was that being in remission is my growth! A year ago I could not get out of bed or eat a single morsel of food. Now, I am healthier, able to eat what I love, and do things I have wanted to do. This is a huge accomplishment for anyone with a chronic illness! I did some self-reflection and realized I was being too harsh on myself. I am a part of a fellowship that helps others like me and I realized how big of an accomplishment this is! There is no fixed definition of growth and success. Instead of feeling bitter over others' success, I started being a part of their happiness. They were there for me when I was at my lowest, so it is my turn to be there for them. I started celebrating the small successes in my life and it made me feel proud of myself. One of the steps to recovering was accepting the fact that it is okay if I am not on the same path as others, as my journey is my own and is unique. Our bodies have been through a lot, so the fact that we can function with all the pain is a huge accomplishment. Our society is always going to have this “fixed” measurement of success. However, setting my definition of growth and success made me feel free and liberated.
“Each person has their journey and there is no fixed timeline for achieving goals in life.”
Thoughts On Being “Strong” with IBD
By: Carina Diaz
This year was my ten year anniversary of being diagnosed with Crohn’s disease, and I’ve often thought back to that time period in my life – and how much I’ve been through since then. I was 18 and a senior in high school freaking out about entering college with a disease I’ve never heard of. I used to think that doctors could fix anything. I saw health as linear. You go to a doctor when you feel bad, they give you medication, and then you go home. Simple as that … except not really.
The process of getting my diagnosis was actually pretty linear compared to other stories I’ve heard. I was needing to go the bathroom a lot more frequently and would be late to class from time to time after lunch period. My mom also noticed a pattern at home, so we went to my primary care doctor. She gave me a referral to see a gastroenterologist and from there I had my first colonoscopy experience. The only thing that made it not so bad was going to my favorite restaurant after, which has since become a tradition.
I don’t remember the exact words that the gastroenterologist told me when he discussed the results, but I do remember how I felt in that moment. Very lost, extremely confused, and unsure of what having Crohn’s disease would mean for me. I immediately felt like an “other.” Different from my friends. I’ve never heard of this illness, I didn’t even know chronic illnesses existed, and I didn’t know anyone else who had a similar story. I felt alone.
Through these past ten years, so much has changed. I have changed and learned a lot. There has been so much information on IBD that my doctors didn’t tell me about that I had to learn on my own or from the internet. I have gained a lot more knowledge and understanding by hearing other people’s stories. Looking back, it makes me want to give 18 year old me a hug for all the suffering that could’ve been avoided.
Having a chronic illness pushes you in so many ways. I didn’t know not all doctors have your best interest in mind. I had to learn not only how to listen to my body, but how to advocate for myself – and that is a process that will never end. I’ve learned to identify my boundaries, prioritize who I allow into my life, how to cope with stress, and that no matter how much I try to take care of myself, I still might not feel well. And that isn’t my fault.
People who are chronically ill often get praised for being strong – and I wish able-bodied people would understand that we don’t have much of a choice. There are things I constantly need to do and be aware of to minimize the chances of a flare. But sometimes even my best efforts won’t prevent that. Crohn’s takes up a big space in my brain and there is not a day that passes that I’m not thinking about my symptoms.
"Lucky Girl": A reflection on privilege and IBD
“Lucky Girl”: A reflection on privilege and IBD
By Natasha Kacharia from the United States
I go to Stanford. I have parents who still love each other. I have amazing friends and a wonderful sister. I drive a BMW convertible. I vacation in Costa Rica and Cabo. For all intents purposes, I have a picture-perfect life.
I always had.
I mean for as long as I can remember, I have always been referred to as a “Lucky Girl.” I never agreed with them. Am I privileged? Yes. Am I lucky? No, I just framed things a certain way. If I lost, I did not want it that much anyway. If I won, the entire world would know about it, and I would underplay how much effort I put into it in the first place. Everything that happened to me – the good, the bad, the ugly – is the best thing that ever happened to me. It is just part of my plan. I used to revel in the nickname “Lucky Girl.”
Now, it annoys me.
Despite being diagnosed with ulcerative colitis 5 years ago during my junior year of high school, this year (my senior of college) was the first time I applied for housing accommodations. I never felt justified before because if I was in remission, then I questioned if I truly needed them. However, after a bad flare during my junior year of college, I decided it was good to plan for the worst-case scenario, so I started my senior year with a single, a private bathroom, and a kitchen. People often thought I paid a doctor to write a letter asking for accommodations for me. Others assumed I simply sweet-talked Stanford’s office of accessiblility for accommodations. I often laugh, neither confirming nor disconfirming either theory. I am not shy about being chronically ill, but I clam up about the specific details. Besides, it is not anyone’s business on why I have certain accommodations. I told my mom about the situation, and she said, “That is a good sign that people think you are normal.”
I am not sure what my facial expressions conveyed, by my mom felt the need to correct herself, “I only meant that you do not look sick all the time.” I gave her a small smile. I knew that statement should have made me happy, but for some reason it did not.
This Thanksgiving, a cousin made a small dig on how lucky I am to attend Stanford and the opportunities that entailed. I wanted to say how lucky he was to have great health, but I simply commented on how we had similar, if not parallel upbringings, then I walked away.
His statement irked me, though. We grew up with the same education and the same access to opportunities. The biggest difference is that I spent my adolescence studying my ass off, and he spent his dating and hanging out with friends. Besides, if he wanted more opportunities, he could achieve it with a bit of hard work. I wanted better health. And there was nothing I could do to achieve that.
I am privileged and I have ulcerative colitis. Chronic illness does not distinguish based on socioeconomic class or a picture-perfect life. I just wish others understood that.
Featured photo by PhotoMIX Company from Pexels.