Not only a doctor, but a dear friend too: An IBD patient's perspective

Not only a doctor, but a dear friend too

By Mahder Ayalew from Ethiopia

Medical care is a fundamental human need and patients should feel comfortable when seeking medical attention from doctors. However, this is often not the case as most patients find it challenging to open up about their health issues. In this article, as I promised in my very first article (Can I be happy after a Crohn’s diagnosis? I say, yes you can), I will narrate my experience with my doctor who assisted me in tackling a health problem related to Crohn's disease and helped me to improve my lifestyle. I will emphasize the importance of the doctor-patient relationship in ensuring successful treatment outcomes and acknowledge the effort made by doctors in treating us as friends rather than just names on a paper.

For a long time, I had been afraid of consulting doctors. Being in their presence triggered extreme fear, making it difficult to communicate my health problems effectively. This fear resulted in me frequently avoiding medical attention until the situation necessitated immediate attention.

However, all this changed when I met my current doctor. He is a compassionate and understanding person who put me at ease and made me feel comfortable around him. He always took the time to listen to me without judging, and this made me feel that I could trust him with my health concerns.

My doctor focused on building a good rapport with me, which made our interactions not intimidating. He understood that patients come first, and he always took his time to explain the reasons for different tests, medications, and the importance of complying with the treatment regimens. He ensured that I understood the processes and reasons for each step of my treatment.

My doctor realized that fear was a significant obstacle to my healing, and he went above and beyond to ensure that I felt at ease during my consultations. He encouraged me to speak up about my worries and any issues that I may have faced during the treatment process.

My doctor's dedication and compassion were instrumental in helping me to overcome my fear related to doctors. I have become more confident in seeking medical attention, and I have started taking responsibility for my health.

The relationship between patients and doctors is an essential aspect of successful medical treatment. Patients must feel comfortable trusting their doctors with their health, and doctors should nurture this trust by treating their patients with compassion and empathy. My experience with my doctor was transformative, and I would like to thank all doctors out there who treat us with respect and care for our well-being. The doctor-patient relationship can make all the difference to a patient's healing journey, and it is a vital component of the medical profession.

Photo by Savvas Stavrinos 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.

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.”

— Dylan Thomas - 1914-1953

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.