Patient Summary on the AGA Clinical Practice Update on Diet and Nutritional Therapies in Patients With Inflammatory Bowel Disease

Patient Summary on the AGA Clinical Practice Update on Diet and Nutritional Therapies in Patients With Inflammatory Bowel Disease

By Peter Park

Obligatory Disclaimer: 

This article is strictly for educational purposes. This article is not to be used or relied on for any diagnostic or treatment purposes. This information does not create any patient-physician relationship and should not be used as a substitute for professional diagnosis, treatment, and/or management. Please consult your health care provider before making any health care decisions for guidance about any specific medical condition. References and links to third parties do not constitute an endorsement or warranty of any kind by Crohn’s & Colitis Young Adults Network (CCYAN). 

Who is AGA?

The American Gastroenterological Association (AGA) is a professional organization focused on digestive health. They bring together doctors, researchers, and others interested in stomach and intestine problems, including IBD (Inflammatory Bowel Disease). The AGA publishes scientific journals, holds meetings, and works to improve patient care.

How was this study done?

Experts (doctors, researchers, and others) in IBD performed a review of existing research articles and studies alongside expert opinion to provide practical guidance on diet and nutritional therapies in IBD patients.. This received peer review both internally within AGA and externally outside of AGA.

This was not a formal systematic review, meaning they cannot recommend the strength of any singular suggestion. 

Key Points:

1. There has not been sufficient data to suggest a singular TRUE diet.

1. According to the AGA, if there was one diet for patients to start from, then it would be the Mediterranean Diet which is “rich in a variety of fresh fruits and vegetables, monounsaturated fats, complex carbohydrates, and lean proteins and low in ultraprocessed foods, added sugar, and salt for their overall health and general well-being”.

2. Low amounts of red meat have been associated with decreased flares in patients with ulcerative colitis.

2. Crohn’s, Stricture subtype 

1. Some Crohn’s patients can develop strictures which narrow the tunnel of the colon that can increase the risk of inflammation with certain harder-to-digest foods. 

2. AGA recommends decreasing fibrous foods and raw vegetables that are easier on the colon to channel through all the way to the rectum.

3. Feeding tube feedings should be discussed with the doctor on staff as there are several specific clinical guidelines. 

1. AGA recommends that patients share this document with their doctor on the most updated guidelines.

4. Vitamins 

1. Patients with IBD are at higher risk for low levels of Vitamin D, B12, and iron. 

2. AGA recommends to speak with your doctor on monitoring levels regularly.

5. Involving the professionals

1. Diet can be complicated by malnutrition, short bowel syndrome, enterocutaneous fistula, and/or requiring more complex management.

2. AGA recommends involving a registered dietitian to help patients in individualizing their diets. 

Summary

Managing IBD requires a multifaceted approach that goes beyond medical interventions. Dietary adjustments, stress management, medication adherence, and regular follow-ups with healthcare providers are essential components of effective management. Additionally, having a supportive network of peers who can offer empathy, understanding, and practical advice can significantly enhance the quality of life for young adults living with IBD.

In conclusion, the key takeaway for young adults struggling with IBD is the recognition of its complexity and the importance of assembling a supportive team, including a GI doctor, registered dietitian, and peers from organizations like CCYAN, to navigate the challenges of living with this chronic condition.

Information in forming this article was taken from the 2024 AGA Clinical Practice Update on Diet and Nutritional Therapies in Patients With Inflammatory Bowel Disease: Expert Review

Source: Hashash, J. G., Elkins, J., Lewis, J. D., & Binion, D. G. (2024). AGA Clinical Practice Update on Diet and Nutritional Therapies in Patients With Inflammatory Bowel Disease: Expert Review. Gastroenterology, 166(3), 521–532. https://doi.org/10.1053/j.gastro.2023.11.303

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When One Diagnosis Leads To Another…

When One Diagnosis Leads To Another…

Maria Mutka from NC, USA

“Don’t you have enough chronic illnesses?”

No one has actually ever asked me that before, but despite my efforts to push the question out of my mind, occasionally, when all my chronic illnesses seem to flare simultaneously, orchestrating a cacophony of discomfort, I ask myself that question and wonder if others in my life are silently asking it too.

At the age of 24, I have been diagnosed with three chronic illnesses. Sometimes I feel like I am collecting them like Pokémon cards. I was first diagnosed at age 10 with inflammatory bowel disease (IBD), specifically ulcerative colitis. 

I remember throughout my adolescence and teenage years periodically filling out a symptoms questionnaire that asked about joint pain, rashes, and fevers. I was aware of the potential extraintestinal manifestations of IBD, but I was so focused on my gastrointestinal symptoms that I relegated any other discomfort to the sidelines.

At the time, I attributed those extraintestinal manifestations only to Crohn’s disease, so I avoided asking the doctor about my sleep attacks or leg pain. On a deeper, subconscious level, I avoided acknowledging the potential correlation between these other symptoms and my IBD because I would have had to accept the fact that my ulcerative colitis was not under control and was affecting more than my gastrointestinal (GI) system. 

I was trying my best to maintain the cognitive dissonance of living with tangible symptoms, fatigue, and depression from my ulcerative colitis without fully acknowledging the ramifications of the disease activity on my whole body and overall health. I succeeded at ignoring the flares of my leg pain and increased sleep attacks that seemed to occur in concert with my colitis flares. 

That’s part of the reason it took me almost 7 years to get diagnosed with sacroiliitis after I first began experiencing lower back and leg pain that left me with intermittent problems with mobility due to leg spasms and shooting pain down both of my legs.

No one could explain why I was experiencing such debilitating pain in my lower back and legs at such a young age: not my gastroenterologist, an orthopedic specialist, a physical therapist, a chiropractor, or, initially, a rheumatologist. It took me first researching chronic lower back and leg pain conditions that are comorbid with ulcerative colitis and then presenting the possibility of sacroiliitis to my rheumatologist for me to finally get diagnosed. 

Once the MRI confirmed it, my rheumatologist noted my prowess in correctly diagnosing my own condition. I couldn’t help but think how silly it was that if I did not have the medical literacy and access to health information that I have due to my education and professional experience, I may have not gotten a diagnosis and treatment for my pain and mobility issues for who knows how many more years.

My next diagnosis of idiopathic hypersomnia at 23 after chronic sleep attacks also resulted from self-advocacy with my providers. When you are continually the one bringing medical attention to your disorders, it can be difficult to not have a type of medical imposter syndrome, essentially believing that you’re just a convincing hypochondriac. Having experienced a long diagnostic journey several times, it has become clear to me that it is not sustainable for chronically ill young adult patients to continually self-advocate for their health without their providers’ support. It is hard enough to live with a chronic illness like IBD as a young adult without having to feel like you are fighting for the care you need all on your own.

Providers who fully collaborate with patients on approaches to their care help to ease the burden of self-advocacy for chronically ill patients. They can partner with patients to think critically and innovatively about management and treatment options that align best with patients’ values, goals, and unique clinical histories. This partnership can lead to the proactive identification of connections between patients’ IBD and other aspects of their health and functioning (i.e., sleep, mental health, pain, fatigue) which can prevent gaps in care due to unaddressed needs or undiagnosed comorbid conditions.

It is no secret to many providers that IBD as an autoimmune disorder can affect more than the GI system and can be connected with other autoimmune or inflammatory disease diagnoses. This knowledge should be widely shared with patients, especially youth and young adults, to empower them to discuss their overall health in a holistic context. The focus should not solely be on the gastrointestinal system; fatigue, sleep issues, joint pain, mental health concerns, and various comorbidities are also relevant to IBD and should be addressed in tandem with GI care.

Provider and patient relationships should serve to empower patients to let providers know when they feel they’ve missed something. Providers should especially take chronically ill patients seriously when they mention newer pain or discomfort. As chronically ill youth and young adults, we spend a lot of our time getting to know our bodies as frequent flier patients. We know our bodies best and deserve to be taken seriously by our care teams. 

It probably goes without saying that I shouldn’t have had to wait 7 years for a diagnosis and treatment of a chronic condition that, when active, makes it difficult for me to walk.  Dismissing the pain of chronically ill patients because they tend to constantly experience pain or discomfort of some sort is an all-too-common occurrence. It is easy for providers to chalk the pain up to an already diagnosed disorder without probing it further. I can’t help but think, though, what the possibilities for improved quality of life and well-being could be if providers and care staff not only heard but listened to my voice. 

Your pain should not be invalidated because you already have a lot of it. If you feel your providers are missing something, speak up. You are the real expert on your body and your health. 

References:

1.  Sacroiliitis: Causes, Symptoms & Treatment Options (clevelandclinic.org)

2.  Idiopathic Hypersomnia (Mayo Clinic)

Featured photo by Medhat Ayad from Pexels.

Navigating the Fatigue Roller Coaster: My Personal Journey with Crohn's Disease

Navigating the Fatigue Roller Coaster: My Personal Journey with Crohn's Disease  

By Yeabsira Taye from Addis Ababa, Ethiopia

Living with Crohn's disease, a type of inflammatory bowel disease (IBD) which is chronic, comes with its unique set of challenges. Among the many symptoms that accompany this condition, fatigue has been a  constant companion on my journey. Fatigue in Crohn's disease is unlike any tiredness I had experienced before. It goes beyond feeling simply tired or sleepy. It is a bone-deep weariness that affects every aspect of my life. The unpredictability of fatigue is one of the most frustrating aspects. Some days, I wake up feeling relatively energetic and ready to take on the world, only to be struck by an overwhelming wave of exhaustion a few hours later. Other days, the fatigue is  ever-present and weighs me down from the moment I open my eyes.  

The constant battle with fatigue takes a toll on my emotional well-being as well. It can lead to  feelings of guilt, frustration, and even isolation. I often find myself feeling guilty for not being able to fulfill commitments or meet the expectations I have for myself. The inability to keep up with social activities or spend quality time with loved ones can lead to a sense of isolation and a fear of missing out.

As a medical student with Crohn's disease, battling chronic fatigue in the midst of hectic schedules is a formidable challenge. The unpredictable nature of the fatigue makes it difficult to plan and commit to my studies. There are days when I wake up feeling relatively energetic, only to have my energy levels plummet suddenly, leaving me unable to fulfill my obligations. This inconsistency can be disheartening and can lead to feelings of guilt and self-doubt.  

The experience of thriving for two years with Crohn's disease taught me that living with fatigue of Crohn's disease is an ongoing journey that requires patience, resilience, and self-compassion. By accepting the realities of fatigue and implementing strategies such as energy management, rest, nutrition, exercise, stress management, and building a support network, I have transformed my experience from one of mere survival to one in which I am thriving, despite the challenges.

Remember, you are not alone in this journey, and with perseverance and a tailored approach, it is possible to  reclaim control over your life and find moments of joy and fulfillment amidst the shadows of fatigue.

Featured photo by lalesh aldarwish from Pexels.

Things I Learned After 1 Year Diagnosed With Crohn’s Disease

Things I Learned After 1 Year Diagnosed With Crohn’s Disease

Advice for the chronically ill and their loved ones.

By Giana Formica from OH, USA

A year ago today, I was diagnosed with Crohn’s disease and my life was forever changed. My body has gone through a lot in a short period of time. I’ve had four hospital stays, an ostomy bag for three months, two surgeries, and one colonoscopy. I’ve learned so much but this is just the beginning. I’m growing and learning everyday new ways to cope and accept the fact that I’m chronically ill and my life looks a little different than most. I’m proud of all that I’ve accomplished this last year but I am still learning and working on these skills and accepting these changes to my life. 

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Progress isn’t necessarily linear.

The unfortunate reality of having a chronic illness means you are going to have bad days. It’s hard to measure your progress when focusing on the negative. 

How to change an ostomy bag.

Really I should say I’ve learned what an ostomy bag is. I have so much respect for my friends with lifelong ostomies. 

If you think you need to use a mobility aid, just get one.

When beginning to search for my own this was the best piece of advice I found. They are made to help people enjoy their lives and not be in pain. Why wouldn’t you want one? 

Art is healing.

Being able to have a creative outlet while growing with the life changes chronic illness brings, makes a world of a difference. 

It’s okay not to be resilient and strong all the time.

As a disabled person, we all hear the phrase “you’re so brave” or “they’re so strong” thrown around by able-bodied folks when referring to our conditions. We deserve to be able to break down and be frustrated about our experiences because sometimes it is just plain exhausting. 

Community building is incredibly important.

Having a support system of disabled friends and able-bodied allies makes such a difference in personally healing. 

Be the representation you needed.

Everyone’s experience being chronically ill is unique. It’s up to you to speak out and use your voice to advocate for what’s important to you.

You are a whole person, beyond your chronic illness. 

Medicine is very scientific. It’s important to remember the holistic aspect of your being beyond your illness or disability. 

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Featured cover photo by Miguel Á. Padriñán from Pexels.

Haemoglobin Heist: Anaemia as a Complication of IBD

Haemoglobin Heist: Anaemia as a Complication of IBD

By Zahraa Chorghay, Lisbon

I transformed into a vampire in a field of daffodils

their lips drooped aghast as I soaked in the blood

of another human

my body was consumed with insatiable hunger

a voracious appetite for haemoglobin and oxygen

for life

the first miracle of life is birth, the second is living 

with all its defiance of the inevitable

of death

Do you know where all my blood went when I showed up to my hospital’s emergency department (ER), my head pounding and tests showing anaemia so acute as if I’d just bled out? They patched me up — a needle inserted into my left antecubital area (inner elbow) to deliver a unit of blood, stat, and some iron too — but remained bewildered as to the cause. On a stretcher parked next to the nurse station, I stared up at the ceiling tile painted with five daffodils, feeling like absolute shit yet relieved at the thought that maybe when all this was done, I would finally be rid of the headaches that had haunted me continuously for over a month.

It’s always the same, believe it or not; “It’s always the Crohn’s, believe it or not,” I told the tired attending doctor. Then, I headed home after an eventful day spent in the ER. 

Anaemia is “the most common metabolic complication” of inflammatory bowel disease (IBD), defined as a haemoglobin level of less than 13 g/dL in men or 12 g/dL in non-pregnant women (Mahadea et al., 2021). Given that haemoglobin is the oxygen carrier within your red blood cells, individuals will have reduced blood oxygen levels in anaemia, underlying the following symptoms:

• fatigue 

• weakness

• low blood pressure

• shortness of breath, even at rest or with mild activities

• rapid heart rate

• numbness or tingling in your extremities

• irritability

• headaches

• pale skin

• slight fever

What makes anaemia particularly complicated in people with IBD is the susceptibility to blood loss, dehydration, malabsorption, and malnutrition from chronic intestinal bleeding, inflammation, and ulcerations. IBD symptoms such as chronic fatigue, along with side effects of medications or surgical procedures, can further mask symptoms that medical practitioners otherwise rely upon to diagnose anaemia. To demonstrate just how complicated it can be, over months, I gradually had all of the symptoms listed above, which I complained about to my family doctor (GP) a couple of times, yet my anaemia remained undiagnosed.

The decrease in haemoglobin levels seen in anaemia can arise from iron deficiency since iron is necessary for haemoglobin formation. To increase iron intake, you can consume iron-rich foods, such as red meat, eggs, legumes, and leafy green vegetables like spinach and kale (Mayo Clinic, accessed 2024). (Palak ghosht, anyone?) Iron supplements, either oral tablets or IV infusions, may also be administered to individuals with anaemia, but those can have adverse effects so dietary changes are preferred. 

Unfortunately, even people who consume sufficient iron can show low haemoglobin levels due to lack of absorption through a diseased or surgically excised gut in IBD, other deficiencies (e.g., of folic acid or vitamin B12), early destruction of red blood cells in hemolytic anaemia, inherited disorders like sickle cell disease or thalassemia, menorrhagia (excessive menstrual bleeding), or adverse effects of certain medications (Penn Medicine, accessed 2024). Depending on the aetiology of the anaemia, different treatment options can be pursued.

In case you’re wondering how anaemic you need to be for your suggested treatment to be a blood transfusion — a last resort option due to its well-documented adverse effects, including potentially immune rejection — I showed up to the ER with a haemoglobin level of just 4.2 g/dL. I can’t get over how I was still able to get through that month of continuous headaches and shortness of breath everytime I stepped out of the house, appearing relatively functional to everyone else, despite calamity looming within me, literally within my veins. The human body is marvelously resilient, subhanallah! Nevertheless, I hope that having read this piece, you will be more easily able to recognize these signs and symptoms of anaemia as well as to advocate for yourself in medical settings, preventing you from having to find out firsthand just how resilient your body can be.

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Featured cover photo by Irina Iriser from Pexels.

I’m sorry to all the people I hurt while I was hurt

I’m sorry to all the people I hurt while I was hurt

By Yeabsira Taye from Addis Ababa, Ethiopia

Being diagnosed with Inflammatory Bowel Disease (IBD) is an experience that is difficult to put into words. It is a moment that carries a mix of emotions, thoughts, and uncertainty. For me, it was a  whirlwind of confusion, fear, relief, and hope all at once. It offered a sense of closure to that chapter of uncertainty.  

During the difficult times of my flare-ups, I found myself longing for the support and understanding of  my beloved ones. Perhaps what hurt the most was the way “some of them” invalidated my experiences.  Whenever I tried to share my pain or express how I truly felt, they dismissed my feelings as mere  exaggerations or attention-seeking behavior. It was devastating to have my emotions disregarded and to  not have my pain acknowledged by those I held so dearly.  

BUT of course I am very grateful for the love and support of the people who take care of me. They  understand the challenges I face and go above and beyond to ensure that I am comfortable and well-cared  for. Now, after I have faced three flare-ups within two years I understood that, it is important to  acknowledge that everyone has their limits; chronic illnesses bring with us a multitude of physical,  mental, and emotional challenges. It is not uncommon for loved ones to experience emotional detachment as they witness their beloved family member, husband/wife, fiancée or friend endure the hardships of a  chronic illness. They may distance themselves emotionally to shield them from the pain of witnessing our  struggle.  

There are moments when the perception of distance from those we hold dear can lead us to inadvertently  detach ourselves from them in an attempt to protect ourselves. It wasn't easy dealing with the physical and emotional pain that accompanied our condition, we may blame them for making our flare-ups even harder  to handle.  

As time went on, I realized that the mistreatment I endured from others was not a reflection of my worth  or value. It was a poignant reminder that everyone faces battles of their own, and sometimes, their harsh  words or actions are merely the projections of their own pain and insecurities. While navigating through  my flare-up, I understood that forgiveness was essential. Forgiveness became a powerful tool in reclaiming my strength and power, transforming the negative energy into something positive.  

Today, I am grateful for the difficult journey I endured during that time of flare-up. It allowed me to tap into my resilience, strength, and inner resources that I might have otherwise overlooked. It taught me the  importance of self-reflection, self-compassion, personal growth, and forgiveness. 

Featured Photo by Vie Studio from Pexels

“I think but dare not speak.” - The hidden misconceptions of chronic illness.

“I think but dare not speak.” - The hidden misconceptions of chronic illness

By Selan Lee from the United Kingdom

I interned in the Perspectives Programme at Kaleidoscope Health and Care during my placement year. During this internship, I designed and managed client events and workshops, created weekly progress reports, and learned about healthcare systems and policy (in the UK, at least). But most importantly, I designed, curated and hosted an art exhibition celebrating intersectionality in chronic illness entitled ‘Low on Spoons, Not Identity’. Among the fabulous photography, fantastic comic illustration and fanciful jewellery pieces on display was a set of 3 (very amateur) A4 panels by me. Entitled “I am not…” each panel addressed a misconception often thought of but not spoken about chronic illness (some of which many in the chronic illness community still believe or are associated with by society, our loved ones or even ourselves.)

The first panel focused on the sainthood or idolisation of the chronically ill. Now, it may seem strange to find inspiration or guidance from someone who is often house- or hospital-bound and barely has enough energy to perform miracles - but the sick have been canonised as martyrs or lauded as idols for years. For example, fictional characters such as Tiny Tim in A Christmas Carol and Beth in Little Women are seen to be too good for this world. Katie Hogben remarks in her exhibition ‘Breaking Apart the Sick Girl Trope’ - that Beth is a “happy flower girl… Her amenable nature never falters, even in her long-term suffering and eventual death.”[1] In modern times, the misconception prevails - so much of the media surrounding chronic illness showcases a beautiful, rose-tinted, inspirational view of life with an often draining and limiting condition. The only way you can tell Hazel in The Fault in Our Stars has cancer is because she has a nasal cannula and an oxygen tank with her—no sign of fatigue, weight loss or steroid-induced moon face. Our social media is also filled with inspirational chronic illness stories and comments praising our ‘bravery’. I’ve received comments which praise ‘my dedication’ for studying during my infusions when really there’s no choice otherwise. 

Such aesthetically pleasing and morally affirming portrayals of chronic illness omit the less beautiful aspects of chronic illness. Consequently, this omits many realities and negates the ability of people with long-term conditions to voice the negativity in their situation. The misconception of being akin to a saint may be desired, but it enforces toxic positivity on the chronically ill - the individual must maintain a positive attitude and minimise their struggles; their lives are not validated if they do not meet this ideal. I, too, play my part in perpetuating this image. I have made social media posts highlighting my achievements since my diagnosis, but rarely do I post about the days I shut myself away in my room when I’m too exhausted. I don’t tell friends about the time I cried about my situation in an accessible toilet in a train station, but rather about the perks of having a RADAR key. Many of us fear isolation and lack of empathy by sharing the ugly side of chronic illness. Still, by continuing this misconception, we are abetting it, and its existence will remain ingrained in its stained glass iconography - distorting our authentic lives.

The second panel confronted the depiction of journeys in chronic illness as a ‘battle’ and the chronically ill individual as a ‘warrior’. I’m sure many people with chronic illness have encountered button badges, hoodies and posters emblazoned with the phrase ‘chronic illness warrior’. Or you probably have seen quotes that link your day-to-day existence with chronic illness as a ‘fight’ or ‘daily battle’, and by living, you are ‘winning’ or ‘not backing down’. These phrases can be supportive, but only temporarily. Chronic illness is something you can never win - hence the use of chronic. Being a warrior means you are courageous, like Joan of Arc (a figure I drew inspiration from in the panel), but I don’t think I am. None of my choices in my health journey are necessarily brave. I chose to self-inject my second biologic because the first stopped working, and I wanted to reduce the time spent in the hospital. I had surgery for my fistula because the pain was unbearable. None of these actions fit the definition of brave. The Cambridge Dictionary defines bravery as “showing no fear of dangerous or difficult things”.[2] I dealt with my dangerous or difficult things, the risk of a flare, anaphylaxis and infection, with plenty of fear. To live my life to its fullest possible extent, I have to accept hard-to-swallow realities and understand that when my life is on the line - I have no choice otherwise. Realising you have no choice is terrifying, but it is equally terrifying knowing the word brave is used here as a stand-in for ‘I’m glad it’s not me’. You’re right - you should be glad it’s not you, but like with the inspiration misconception, the use of ‘warrior’ and ‘courageous’ minimises our lives and makes our entire existence seem pitiable. Our existence is the same as yours - human.

Finally, the last panel looked at the misconception of chronically ill people being lazy. I’m sure plenty have felt lazy and wanted to ‘rot’ away in bed for the day, but the fatigue many chronically ill people suffer from is never the same. In early 2022, the term ‘goblin mode’ began trending, and many embraced an aesthetic which encouraged unapologetic laziness and self-indulgence. However, the aesthetic, as highlighted by Hannah Turner, ignores how much of the disabled and chronic illness community “embody goblin mode because there is often no choice not to”.[3] When you have low energy, you don’t want to expend the few spoons you have to change clothes or wash your hair. You use them to feed yourself or conserve that energy.

Moreover, laziness has connotations of purposeful slovenliness. I doubt anyone wants to be restricted to their homes while their friends go out or we miss out on cultural experiences. I missed my first concert, didn’t get to spend the last few months of high school with my friends, and had to cancel at the last minute for so many things because of my fatigue. My ‘laziness’ is a harbinger of regret over every missed opportunity. None of this is purposeful. I do not want to be ‘lazy’, but laziness has been thrust upon me.

There are many misconceptions out there about chronic illness, and there are probably some I don’t know of. But by keeping them unspoken and allowing them to penetrate our thoughts - we are enabling their pervasive influence on how we tackle chronic illness. Letting them be spoken and discussed will allow us to change the perspective and reduce their potency - one misconception at a time.

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References

1. Brave. (2024). https://dictionary.cambridge.org/dictionary/english/brave

2. Turner, H., & Sacca, P. B. B. (2022, March 21). As A Disabled Woman, The Goblin Mode Trend Doesn’t Sit Right With Me. Refinery29. https://www.refinery29.com/en-gb/goblin-mode

3. Welcome to Breaking Apart the Sick Girl Trope online exhibition. (2022, November 1). Breaking Apart the Sick Girl Trope. https://thesickgirltrope.wordpress.com/online-exhibition/

Don't Give Me Morphine!

Don’t Give Me Morphine!

By Peter Park, 4th year medical student, Plano TX

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.

A Not So Invisible Illness: Inflammatory Bowel Disease

A Not So Invisible Illness

By Maria Mutka from NC, USA

Content Warning: Body dysmorphia, abnormal eating and exercise patters.

As a high school teenager, I thought I was doing well at hiding my illness from my friends and peers. When there were snacks or meals served at school that I knew would send me straight to the bathroom, I deftly avoided them and made excuses that I had already eaten or just wasn’t hungry. If I was experiencing extreme abdominal pain, bloating, and gas during the school day, I tried to ignore it while positioning myself as close to the door as possible, just in case.

For most of high school, I experienced a constant flare that fluctuated between mild and moderate symptoms. This made hiding the tangible symptoms of my ulcerative colitis somewhat possible in my mind, although my friends and peers undoubtedly knew I was experiencing gastrointestinal health issues. I had briefly mentioned to them before that I had inflammatory bowel disease (IBD), but avoided elaborating on what that meant out of embarrassment and fear that it would make them uncomfortable.

I soon realized that there was one facet of my illness I could not hide from my classmates: while being a sophomore in high school, I was 5’2” and barely 80 lbs., with the face and the body of an 11- or 12-year-old. This visible manifestation of my illness through delayed puberty caused me to experience a lot of insecurity, which in turn led to becoming obsessed with food intake and exercise. I was constantly trying to find the perfect balance between food and exercise that could overcome the deleterious impacts of my ulcerative colitis on the absorption of nutrients critical to my growth.

Perhaps the reality of my underdeveloped body so heavily impacted me because of my journey with ulcerative colitis since the age of 6. I had gotten used to the other physical manifestations of the disease: frequent bowel movements, diarrhea, blood, pain, and extreme fatigue, but this limbo stage of early pubescence was new to me. It was extremely damaging to my adolescent attempts at processing and accepting my body for what it was, and at developing anything resembling a positive body image.

At the time, it felt as though with my IBD symptoms continuing, the very least my body could offer me was a sense of somatic belonging and self-worth that I felt could only come from looking like my peers. I was determined that looking my age would help me finally feel like I had access to the same sort of normal teenage experiences they did. Maybe once I looked like everyone else, I would feel more confident in making new friends, being involved in athletics, straying outside the comfort of a singular, perfectionistic focus on academic success by making mistakes, and dating.

For so long, I let my physical appearance dominate my social interactions and extracurricular activities because I felt like an imposter in my own body, completely estranged from what I thought it meant to be a teenager like my peers. In my mind, I was only able to watch from the sidelines as high school, along with the seminal memories and lessons that accompany adolescence, unfolded for everyone else.

Part of the issue was that I was not simply imagining my peers’ perceptions of my physical appearance. Under the guise of concern, while trying on costumes for high school theater productions, several of my peers would tell me that I needed to eat more, bluntly stating that I looked like a twig. In those moments, I could not have felt more infantilized or more childlike not only in appearance but in how my peers treated me.

It was not only my peers who infantilized me. Eventually, I was referred to an endocrinologist for my stalled growth. While I had looked forward to identifying possible solutions to my inability to gain weight and progress further in puberty, all I received from my doctor were vague assurances I would eventually grow and that my endocrine system was in working order. These small efforts at placating the concerns that were wreaking havoc on my mental and social quality of life while well-meaning, were harmful. They reinforced my ever-growing anxiety that my situation would never change and that my mental health and social quality of life did not matter.

My experience with US health care systems’ large deficits in addressing chronically ill youths’ psychosocial needs and quality of life is, unfortunately, not at all unique. Whether these needs are avoided intentionally through health systems causing direct medical trauma, or through omission in failing to address social determinants of health (e.g., housing needs or food needs), the harm done is impactful and lasting. If providers had screened for or discussed my mental health and psychosocial needs related to my IBD at any point, I would have jumped at the chance to talk about it. However, my physical symptoms were the only topic of discussion and implied to be the only issue that could even concern me.

I know now that delayed puberty is not an uncommon comorbidity of pediatric inflammatory bowel disease, as many studies on the subject have shown. Despite my at-the-time unassuageable fears, I did eventually grow and complete puberty, although I do still receive comments that I look young for my age.

Looking back at my adolescence, when I felt like I was perpetually stuck in a Groundhog Day scenario due to my delayed puberty, in hindsight, I can appreciate all my body did for me. I was able to make it through a multi-year-long flare, and all things considered, my body managed it pretty well. Looking back, I try to have compassion for my perfectionistic teenage self who was determined to look like her peers to an unhealthy extreme. What she needed was a pat on the head or vague assurances everything would turn out okay. She did not even need hormone therapy, medication, or any sort of quick fix to help her start puberty earlier. It was in many ways a lot simpler than that: she needed providers and a broader health care system that could recognize her need for mental health support and do something about it.

Featured photo by mododeolhar from Pexels.

A Dozen Extra Organs

A Dozen Extra Organs: 12 Organs You Could Survive Without

By Zahraa Chorghay, Toronto, Canada

“I don’t have guts.”

“Hahaha.”

“No really, I don’t have guts. I’m literally missing my large intestine.”

“Wait, are you serious?”

“Yes, why would I joke about that? Plus, I’m one of those people who like to use the word literally for literally, unlike some people who mean figuratively when they say literally.”

“But… how is it possible to not have a large intestine?” [and still be alive?]

---

That last part no one says out loud, but I can fill in the blanks. After all, this is a fairly representative template of how these conversations tend to go. Somewhere between awkwardness, disbelief, and my personal favourite, curiosity, lives disclosure – a process that is central to forming and maintaining relationships (Willems et al., 2020). 

So if you want to progress from stranger to friend, or just have more honest conversations with your friends, lover(s), or family, preferably with a [wry] sense of humour about missing organs, here is a list I created. It’s a list of organs, not including limbs and sensory organs, that can be removed from the human body that would still allow someone to survive with a fairly decent quality of life. 

“Decent” quality of life is, of course, a subjective statement. For our present purposes, let’s define it to be that most people who have had this organ removed and fully recovered from the surgery are able to have a fairly independent life, including performing essential daily personal and professional tasks and maintaining social relationships. 

It’s a fairly morbid list. Most of the information comes from my own knowledge on the subject gathered through readings and discussions, though I fact-checked details on the Mayo Clinic website. 

Without further ado, here’s the list of 12 organs that you could probably survive without: 

#1 Appendix.

If you have appendicitis, in which your appendix becomes inflamed, enlarges, and can even burst, then your appendix may be removed by performing an appendectomy. Since the removal of the appendix did not seem to lead to noticeable adverse effects for most people, it has been traditionally thought of as a vestigial organ, although increasing research suggests that the appendix plays an immunoprotective role.  

#2 Tonsils, including adenoid tonsils.

If you have tonsillitis, in which the tonsils become infected and swollen, your tonsils can be removed during a tonsillectomy. This used to be a common childhood procedure, but given the role of tonsils in preventing pathogens from entering the body and other medical considerations, non-surgical interventions for tonsillitis are increasingly preferred.

#3 Thyroid.

If you have the unfortunate diagnosis of thyroid cancer or dysfunction, such as goiters or hyperthyroidism, a thyroidectomy may be performed. If partially removed, your thyroid may still function normally. However, following a total thyroidectomy, you would require daily hormonal replacement therapy, given the crucial role of the thyroid gland in producing hormones essential for metabolism, growth, and development. 

Digestive Organs

#4 Colon / Large intestine.

Your colon may develop cancerous polyps or inflammation due to diseases such as Crohn’s or ulcerative colitis. During a colectomy surgery, to get rid of this cancerous or highly inflamed bowel tissue, your large intestine may be partially or totally removed.

The remaining colon or small intestine may be diverted towards the abdominal wall to allow faecal matter to safely and easily leave the body through an opening on the belly called a stoma. This is an ileostomy, and people with stomas often refer to themselves as “ostomates.” The ostomy bag must be emptied every few hours and changed every few days for the individual to live comfortably.

Alternatively, the remaining intestinal tissue can be restructured to form an internal J-pouch where faecal matter is collected and then passed through the rectum. Unlike an ileostomy, in this case, no medical aids like the ostomy pouch are required.

#5 Rectum.

Depending on the presence of diseased tissue due to rectal cancer or if intestinal inflammation spreads into the rectum, a proctectomy can be performed to remove all or part of your rectum. People with total proctectomies may refer to themselves as “having a barbie butt,” hinting at the lack of an anal opening just like a doll. In this case, they would also rely on an ostomy bag for daily functioning.

#6 Gallbladder.

A cholecystectomy can be performed to remove your gallbladder if complications or cancer resulting from the presence of gallstones, polyps, or inflammation is detected. Most people recover from cholecystectomies with little or no digestion issues. Since the gallbladder is responsible for storing bile, a fluid that helps your digestive system break down food, in the case of digestive issues, this can be managed through dietary and lifestyle choices or medication.

#7 Spleen.

Following trauma, infection, cancer, or blood disorders, your spleen can become inflamed, enlarge, or rupture. In this case, a splenectomy is performed to remove this organ. Since the spleen plays immune functions like red blood cell filtration, following surgery, some individuals may be more prone to infections and would require specific vaccinations or medications.

#8 Stomach.

There are many types of bariatric surgery that you can undergo. Some surgeries address trauma to the stomach or cancer. Other surgeries are for weight-related health issues where non-surgical interventions have not been sufficiently effective, and the issues are life-threatening (e.g. can lead to cardiac arrest). The stomach can be partially or fully removed, and the stomach can be partially or fully bypassed when connecting the oesophagus (food pipe) to the small intestine. Following surgical recovery, your quality of life can be managed through dietary and lifestyle choices.

Urinary Organs

#9 Kidneys.

A nephrectomy can be performed to remove you kidney, typically for organ donation, in which the recipient has failed kidneys and may even rely on dialysis for kidney function. While you can technically survive without both kidneys, because the kidneys provide an essential function of blood filtration (resulting in urine production), you would need ongoing dialysis, which is an intensive procedure that can highly compromise quality of life. 

#10 Bladder.

In the presence of cancer, or of development or neurological or inflammatory disorders of the urinary system, a cystectomy can be performed to remove your bladder. The details of the cystectomy vary depending on the spread of disease; for example, reproductive organs may also be removed. In the absence of the bladder, a urinary diversion is created so that urine can safely and easily leave the body through an opening on the belly, called a stoma. This is a urostomy, and people with stomas often refer to themselves as “ostomates.” The urostomy bag must be emptied every few hours and changed every few days for the individual to live comfortably.

Reproductive Organs

#11 Testicles / Testes.

In the event of testicular cancer or trauma, an orchiectomy may be performed to remove your testicles. While most people can return to a good quality of life following full surgical recovery, the individual would be unable to conceive and may also experience sexual dysfunction. Given the role of the testicles in producing testosterone, hormonal replacement therapy following surgical recovery is increasingly recommended to prevent long term adverse outcomes.

#12 Ovaries and Uterus.

Following cancer, trauma, conditions such as endometriosis, or for reproductive control (particularly in areas of the world where menstrual care and contraceptive options are limited), an oophorectomy to remove one or both of your ovaries and/or a hysterectomy to remove your uterus may be performed. Following surgical recovery, the individual would be unable to conceive. While most people can return to a good quality of life following surgical recovery, given the role of the female reproductive organs in producing oestrogen and progesterone, hormonal replacement therapy is increasingly recommended to prevent long term adverse outcomes.

Featured photo by Karolina Grabowska from Pexels.

"Whispers of Weary Stars"

"Whispers of Weary Stars"

By Tanisha Singh from India

Beneath the moon's tender gaze we tread,

We who bear the weight of threads unseen,

A tapestry woven with threads of lead,

A dance with tiredness, where we convene.

Each step echoes softly with a sigh,

As weary limbs journey through the day,

A symphony of shadows in the sky,

Where sun and moon alternate, as they sway.

The stars, like whispers of forgotten dreams,

Hold secrets of the tired souls who roam,

In twilight's grasp, where silence gleams,

They paint the canvas of a quiet home.

Uncertainty, a specter of the night,

Its haunting touch, a shiver in the dark,

In eyes that seek a glimmer of insight,

We navigate the paths unknown, embark.

Oh, how we yearn for dawn's embrace,

To shake the weariness from weary bones,

Yet in the night, we find a different grace,

As shadows whisper tales in muted tones.

A tapestry woven with strands of hope,

Each fiber intertwined with threads of fear,

In tiredness, we learn to tightly cope,

Embrace the symphony that lingers near.

"Whispers of Weary Stars" they gently say,

In tiredness' grip, we find a way,

To face the unknown with hearts ablaze,

And navigate the night, embracing the maze.

Seeking meaning in illness

Seeking meaning in illness

By Tanisha Singh from India

Psychoanalytical literature has often suggested that every symptom/illness often has an adaptive purpose, no matter how intolerable and unpleasant. In some aspects, in which the illness prevented something worse and prevented the recognition and perpetuation of a reality that was probably intolerable. It is in this that the illness may offer to the bearer something of value to be derived from one’s future with illness. Freud was of the idea that neurosis or illness would block the instinctual energies of one’s psyche which are so essential for one to be able to live a full life, as if split off from one’s internal drives/instincs. So, it is suggested that perhaps, in one sense, illness may offer an opportunity to free up those psychical forces that are now presenting in front of us as illness, which otherwise would have operated overtly, hidden from view, somewhere in some layer of the psyche. 

I have learnt that a chronic illness does not just fit into my life as it was, or into my personhood as it was, and that a new life/self had to be constructed for me to accommodate this reality of having a chronic illness in a way that is atleast somewhat tolerable or settled. That I suppose, would require even a cognitive and emotional meaning making exercise, which I feel this psychoanalytical view of illness has offered to me. 

I was living a life where I was working two jobs (having halted my studies), eating less, working hard at work, at the gym, at every aspect of my life to be able to overcome my reality: a reality with minimal familial support, with meagre financial resources, what have you. I was extremely lonely, unhelped, and alone. I missed having a family, I missed feeling supported and I really missed not having to put out one fire after another which was wearing out my nervous system at a rapid rate. What was worse is that this sense of turmoil was not just environmental, it was also an internal state. I was determined to change my circumstances, so day in and day out I breathed the fire of restless ambition. The fire, which is often idealized in the capitalistic world, was not a home the body-mind should have to perpetually rest in. Where was the ‘rest’ even? 

To cut the long story short, a couple years later, I found myself with an illness that would said, “I am here to stay, and I can’t be ignored.” 

It took falling this severely ill for me and my family (atleast a part of it) to notice me and come to my aid. It took falling this sick for me to finally quit chasing a ghost and to slow down. It took me the morbidities of a being a mortal being to acknowledge my mortality and not try to outrun it. To reasses my choices. To really ask myself, “If I am to live a difficult life, what would I want to really spend it doing? What would make the pain of it all slightly worth living through?” 

It took my illness for me to find better meaning in my life. I wanted to live to be able to do the work that made other people’s lives a bit more tolerable, I wanted to live to be able to enable my closest friends and other loved ones lives their lives feeling more supported and loved! I wanted to love and laugh with my people, I wanted to dance, and read and speak to people about their realities and such. I wanted to rest! I wanted to slow down! I wanted to be helped. (And as I have said oftentimes before, there is respite in patienthood.)

And in a very twisted sort of way, rest and support only come with my illness. I still hate it though, but begrudgingly sometimes, I have to agree that it wasn’t random. It prevented something much worse: a complete exhaustion of the self in the pursuit of something while desiring and needing something entirely different that at the time didn’t feel like it could come.

Featured photo by Pixabay/www.pexels.com/photo/pile-of-books-159866/

Scrying

Scrying

By Divya Mehrish from New York, USA

We seek ourselves in the blue of reflection:

    the way flames flit across our eyeless

faces like dying   butterflies,            wings wilted

by the limelight. The cracks in our bodies echo 

      the fissures       of the rusting earth:             veined 

   without warning.     Tell me,        what blood   flows

  through your blood -less      body?             Soften   

           your chest            so I may          peel        apart       your ribs,          

                   slurping             your ichor           like ambrosia—                                        

    sweet     until I forget         I am allowed         to die.         

              Moonlight                   is catching; caught         in the jaws          

   of arched          windows. We bid the sun   goodnight        with palms 

      ignorant of the adagio           music of curved              rims.          

   If we try hard           enough,                       we can make       anything                 

                      sing.         Let us hold          ourselves            in balance: 

stacked                       and straight                   and tall—                look ahead,             

              and you won’t             get lost                    in yourself.   I turn 

    away from you             to shield             my eyes          from the scalding 

                  shadows,           but not        before       I catch             a pearl 

     of salt                dripping       delicately          down,                    clinging 

          to the bottom               of your eyelid. Sorrow           is corrosive,     

  you know.                 You should remember:            already,  

                         you’ve lost                   your gut                to self-erosion. 

Gaze         into the cerulean      depths             of the scrying       bowl

       and watch             your own image                                   shudder 

                 in wet agony.      There, there you may find yourself.

Featured photo by Bogdan Dirică from Pexels

Musing over a weight gain and IBD

Musing over a weight gain and IBD

By Mahder Ayalew from Ethiopia

Growing up, I always faced the challenge of being thin and constantly falling sick. I vividly remember being just 28 kg (62 pounds) when I was 12 years old. My health was a constant concern, and I found myself visiting hospitals often in search of the cause of my poor health. However, for six long years, the cause remained elusive.

Finally, the culprit behind my health issues was discovered - Crohn's disease. Although finding the cause brought some relief, the treatment plan involved the use of steroids,  As expected, I rapidly gained weight, putting on 10 kg (22 pounds) in just three months. My appetite became insatiable, and I started feeling healthier as the pain began to subside. But this newfound stability was short-lived.

Whenever I went off the steroids, my appetite would decrease, leading to weight loss, and my hopes would diminish. This cycle repeated itself for the next seven years. Despite the turbulence, the journey was worth it, as my quality of life improved significantly after my diagnosis.

Four months ago, I underwent surgery due to a fistula, and a portion of my stomach was removed. The surgeon was confident that I would gain weight after the procedure. Many of his patients experienced weight gain within just a few weeks. However, I remained skeptical, as I had never gained weight without the aid of steroids. My expectations were set low.

But a few days ago, as I stepped onto the weighing scale, I noticed a change. It wasn't a dramatic transformation, but it was enough to make me question whether I had truly gained weight. I rushed to the pharmacy to confirm it, and to my surprise, the scale was correct. I had gained almost 4 kg (8.8 pounds) without the assistance of steroids. This revelation triggered a flood of emotions within me.

I felt happiness and relief at finally achieving weight gain without the use of medication. However, I was also filled with fear, unsure of whether I would be able to maintain this weight or if I would experience a downward spiral once again. All my life, I had yearned for a sense of normalcy - a normal weight, a normal life. Perhaps this is the start of that journey. Perhaps I should celebrate this achievement. Maybe, just maybe, the future holds good things for me. I hold on to my faith with determination.

One positive aspect that emerged from my Crohn's diagnosis is a newfound appreciation for life's simple pleasures. I no longer take things for granted and express gratitude on pain-free days. I am grateful when I can eat with a healthy appetite, when I have enough energy to carry out my daily tasks, and when I experience a break from the burden of illness.

Although uncertainty lingers, the hope for a brighter future burns within me. My journey with Crohn's disease has been challenging, but it has also taught me resilience, gratitude, and the importance of cherishing the moments of respite. I continue to face my health battles with determination, taking each day as it comes, and trusting that the road ahead will lead me to a life that surpasses normalcy - a life filled with happiness, growth, and a sense of fulfillment.

Featured photo by Ann H from Pexels

Just a list of things my people do to support me

Just a list of things my people do to support me

By Tanisha Singh from India

I feel, as much as I have had to figure out how to live with a chronic illness, those who care about me have also had to figure out how help me live with it. And I don’t think I knew the depths of other’s empathy before, ‘til the time I was at the mercy of it. So, here is a simple, plain list of things that others have done that helped me. I feel that appreciating what is working can be an encouraging factor in raising awareness about the much needed structure of support that is needed to accommodate disabilities and/or living with a chronic illness.

1. My bestfriend, had come down from Canada to be with family and happen to fall sick because of the extreme weather conditions in India, while I myself was struggling with my illness. We are each other’s primary support structures and somehow we were both sick. He said to me a few days later, when he showed up at my house to help me with certain chores, as we carried bags of veggies which often resemble the weight of a mountain for me to carry, that he knew I needed him more and I lacked support, so he tried to recover to be able to do that for me. 

2. My bestfriend, Moomal, sent me really expensive supplements from where she lives and each time she is traveling to India, she never forgets to ask me if I need anything from here. 

3. Another one of my best friend’s, Parakh, I know is softer towards me, and works extra hard at trying to make me laugh, even more so than before, everytime we talk, and I know that it comes from a place of recognition and acknowledgment of the difficulty that comes with living with an illness.

4. They check up on me, encourage me relentlessly to put myself out there, to go live the way I want.

5. They read up about my illness. They inform themselves so as to better understand my life.

6. My friends walk slower and help me with my work, with my bags, and they try always to meet me at my house (as I prefer that more) without requiring me to go out that much or exert myself.

7. Even more importantly, they include me. I had lost most of my social circle after the illness because of my absences and my inability to be able to do the things I could do as an able bodied person before, however what remains is a small but valuable circle of friends who genuinely want to spend time with me, doing the things I am able to do.

8. Mohit and Moomal have both baked me cakes that I could eat.

9. My ex boyfriend, Devang would read books on new medical advances that could offer a ray of hope to me. He would stay up at night with me when I couldn’t sleep because of pain. He would be on a call with me while I was on my way to the doctor. He embraced the illness as part of our lives without making me feel different because of it. He once drove down to my house to cook for me, when I was very sick, in between his work.

10. Pulkit holds me when I am feeling dizzy, never lets me pick up my mammoth bag, and came to light up my empty house on Diwali.

11. Nidhi and Amna have asked me about experiences that made me feel seen in class. Once Nidhi asked me about my experiences with doctors, that let me burst into tears and offered a cathartic release I didn’t know I needed. Amna stopped another person in class from interrupting me when I really had to leave.

12. My peers Aditi, Janhavi, Niyati, Tejal, Kavya at my postings, have always covered for me when I am on sick leave.

13. My family to not bother me with worrisome familial affairs to try not to stress me out.

14. The institutions I have studied in have tried to accommodate my abilities, keeping in mind my illness. 

15. Moomal and Mohit do this thing, where they try to get others in the places they have invited me to, to be sensitive towards me, like they are looking out for me and protecting me in the outside world.

I am grateful for how much support and kindness I have found that enables me to live my life as someone with a chronic illness.

Featured photo by Irina Iriser from Pexels

Enough: An IBD Poem

Enough

By Divya Mehrish from New York, USA

What if I told you the spine 

is oblong like a domino,

that the body is a memory

that loses itself and keeps

losing itself like a ripple

that echoes across a glassy

mirror of water until the sun

blinds its shrinking radius

into silence. What if I told

you that you have only been

taught the shape of your hips,

that what you see in the hum

of your reflection is not what

you are but what you could have

been. What if I told you the gut

is a planet and your torso is orbiting

a sun it cannot find. What if I told

you the human skeleton knows not 

how to forget pain, that it touches

itself gingerly, as if its entire life

has been permanently bruised. 

What if I told you reminiscence 

exists as a light year—the star 

exploded centuries ago, but from 

where you sit, its serrated frame 

flames into the swollen center 

of your fickle vision. What if I told 

you, softly, that you are enough? 

You are enough. What then?

---

Featured Photo by Johannes Plenio by Pexels.

Reactions and Opinions about IBD: Addressing Misconceptions

Reactions and Opinions about IBD: Addressing Misconceptions

By Mahder Ayalew from Ethiopia

It can be frustrating when people don't understand or believe in the reality of my condition. I have encountered various reactions and opinions, some of which are misguided or ignorant. Being told that my illness is some kind of satanic problem is not only offensive but also shows a lack of understanding about the nature of inflammatory bowel disease (IBD). IBD is a chronic autoimmune condition that has nothing to do with supernatural forces or spirits. It is a real, physiological condition that requires medical attention.

Others may suggest that my condition is all in my head and that I should simply think positively or not dwell on it too much. While a positive mindset can certainly help in coping with any chronic illness, it is important to recognize that IBD is a complex and unpredictable condition. It is not something that can be cured by positive thinking alone. Medical treatment and management are crucial for maintaining my health and preventing flare-ups.

There are also those who believe that there must be a definite cure for my condition. While medical research is constantly advancing, there is currently no known cure for IBD. It is a chronic condition that requires lifelong management. Statements suggesting otherwise can be disheartening, as they overlook the reality and challenges of living with a chronic illness.

Being told that I am unfortunate because of my condition can also be disheartening. While I understand that IBD has its challenges and affects my daily life, it does not define me as a person, nor does it lessen my worth or happiness. I choose to focus on the things I can control and find ways to lead a fulfilling life despite the limitations imposed by my illness.

There are those who express concern about the long-term effects of medication and the idea of relying on medication at a young age. It is understandable that people may worry about the potential side effects of medication and the impact it may have on my overall health. However, in consultation with my healthcare team, I have made informed decisions about my treatment plan. I understand that medication is necessary to manage my condition and prevent further complications. It is essential to prioritize my health and well-being above any concerns or judgment from others.

Living with IBD has taught me resilience, empathy, and the importance of self-care. While I have encountered different reactions and opinions about my illness, I have learned not to let them define me or affect my journey towards maintaining good mental and physical health. I choose to focus on finding solutions that work best for me and living a fulfilling life despite the challenges posed by my condition.

Featured Photo by Pixabay from Pexels

Found in the absences

Found in the absences

A poem about how invisibly illnesses may not be seen on the surface, but can be found in the absences.

By Tanisha Singh from India

In hidden corners of the canvas, tales unfold,

Where visible masks give way to stories untold.

A symphony of whispers, a dance of veiled pain,

In the labyrinth of unseen, where shadows wane.

A wrinkled shirt, a faltering gait's embrace,

Each tremor of pen, a chronicle of grace.

Timelines amiss, assignments delayed,

Life's fabric frayed, in stitches unsplayed.

A diet selective, encounters evaded,

A world in turmoil, inner battles paraded.

Disheveled tresses, chambers unkempt,

Edges unsewn, where emotions are kept.

Absence speaks volumes, silent cries persist,

Invisible battles etched where eyes insist.

For to be witnessed in struggle's embrace,

Is to breathe in a world where one finds their place.

In realms veiled from sight, stories take flight,

In whispered metaphors, darkness and light.

No need for solace, nor false optimism's balm,

Just acknowledgment true, in the realm of the calm.

These nuances of life, a tapestry so complex,

Where wearied hearts are marked with scars and vex.

Yet in the quiet understanding, souls entwine,

A lifeline of compassion, humanity's sign.

So let us peer beyond the surfaces so plain,

Embrace the hidden stories, the depths of strain.

For in seeing those battles, courage finds its stead,

In this cryptic narrative, where truth is softly spread.

---

Featured Photo by Paula Schmidt from Pexels

The Holiday Gatherings with IBD

The Holiday Gatherings with IBD

By Linda Yoo from Washington, USA

Holiday gatherings can be filled with not only excitement, but also anxiety. Sometimes at holiday gatherings I spend time with those who are closest to me; however, there are times when I spend long periods of time with those I do not frequently see. Awkward conversations and unfamiliar places can be a part of the holidays. Especially with holiday travel, it can be a bit hectic and frustrating with airports having long lines and packed planes. But overall, I always enjoy spending time with friends and family. Depending on my dietary needs and IBD disease state, my requests and accommodations might change. But for the most part, I try to keep to the following tips and tricks for holiday gatherings.

My tips & tricks for holiday gatherings:  

Communicate my food accommodations with the host directly and work something out, or offer to bring my own dish to the gathering. 

• Sometimes hosts have trouble accommodating unfamiliar dietary restrictions; it can be helpful to give examples of items I might enjoy and brainstorm with them.

Communicate with others my boundaries that keep me emotionally, physically, and mentally safe. 

• “I need to nap. I will meet you later for dinner.” 

I do not feel the need to share any information I am not comfortable with sharing. My business is my business. 

Try to prepare early, whether it is buying or wrapping gifts.

Find a place in the gathering location where I can just disappear for a bit to relax, gather my thoughts, or hide from others. Sometimes, I just need some time alone or want to escape from the constant conversations. 

If I am in a flare…

• I will pack my “flare bag,” which includes an extra pair of under garments, pants, deodorizer, wipes, and any medications. 

• Depending on the gathering, if anyone asks why I changed my pants, I either tell them what happened, or I just say I got a stain on my pants from accidentally spilling my drink-oops!

• I will ask the host if I can use another/more private bathroom. 

If I am traveling…

• Find some activities and time at my destination to spend by myself or someone I am comfortable around.  

• Drinking coffee while walking around the lake

• Bring something that reminds me of home. 

• A pillow cover that smells like home 

• Prepare for the holiday travel rush, and have a backup plan. 

• Pack any IBD medications and a “flare bag” just in case.

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Especially as the holidays get closer, I find that hosts of holiday gatherings can be stressed. To help everyone prepare, it is crucial to communicate with others about any requests and needs early. I have always struggled with asking for help or accommodations because I feel like a burden. I have come to realize that my comfort and safety are paramount! From my experience, hosts of gatherings want to make sure every guest is taken care of. It is so important to remember that everyone deserves to have a safe, fun, and relaxing holiday!

Featured Photo by Margerretta from Pexels

Advocating for IBD Patients in Washington, D.C.: A Journey Towards Improved Healthcare

Advocating for IBD Patients in Washington, D.C.: A Journey Towards Improved Healthcare

By Karen Mancera from Florida, USA

In the heart of our nation's capital, I had the opportunity to bring the voices of Inflammatory Bowel Disease (IBD) patients and the medical community to the forefront. As both an IBD patient and a researcher, I had a unique perspective to share. Together with multiple dedicated gastroenterologists and several other patients, we ventured to Washington, D.C., to advocate for increased accountability from insurance companies, reduced prior authorizations, increased research funding, and enhanced support for healthcare professionals.

The Call to Action

For those unfamiliar with IBD, it is a chronic and often debilitating condition that affects millions of individuals worldwide and its incidence continues to increase. Managing the disease is a lifelong commitment, involving a complex blend of medications, surgeries, and an array of physical and emotional challenges.

Over time, one thing became increasingly clear to me: the healthcare system could do more to support IBD patients and the professionals who care for them. This realization led to the decision to advocate for change in the heart of American politics.

Preparing for the Journey

Our mission to advocate for IBD patients was planned by the American Gastroenterological Association (AGA) during their annual leadership summit. Joining me were several passionate social media advocates and expert gastroenterologists who had seen firsthand the challenges faced by their patients and their staff.

Before our scheduled activities, we participated in a media training to complement our advocacy efforts in our local communities. AGA also prepared us with extensive research and data to support our message, emphasizing four critical areas for improvement: increased accountability from insurance companies, reduced prior authorizations, increased research funding, and enhanced support for healthcare professionals.

Meeting with Representatives

Armed with our resources, we had a series of meetings scheduled with congressional representatives’ staff. Sharing our first-hand experiences, we discussed the immense hurdles faced by IBD patients and the healthcare community, while underscoring the necessity of change.

Our stories focused on the crucial need for increased research funding to advance treatment options and understand disease etiology. We highlighted that research is a lifeline for patients who often exhaust all available treatment options. We asked our representatives to advocate for greater financial support and press for transparency on decisions imposed by health insurance companies.

Reducing Prior Authorizations

One major roadblock in the treatment process for most patients is prior authorizations. These require physicians to obtain approval from insurance companies before certain treatments or medications can be prescribed. The result is often frustrating delays and complications.

Our plea to reduce prior authorizations resonated with our representatives. We explained how this measure could streamline the treatment process, giving patients quicker access to the care they need, and providing doctors with more flexibility to determine the best course of action. Our message was clear: reducing prior authorizations would improve the quality of life for IBD patients and make the jobs of healthcare professionals more manageable.

Enhancing Support for Healthcare Professionals

This was also an opportunity to advocate for the unsung heroes in the IBD community: healthcare professionals. The demands of treating patients are significant, and their job is made even more challenging by endless administrative tasks and insurance hurdles.

The gastroenterologists who joined us, recounted their experiences with burnout and the vital need for more support and resources. We urged our representatives to explore solutions, such as addressing issues with medicare reimbursements, and reducing administrative burdens.

The Power of Collaboration

Our journey to Washington, D.C. exemplified the power of collaboration and advocacy. We brought our personal stories, our dedication to patients, and our collective experiences to Capitol Hill.

The result was a promising commitment from several representatives who pledged to champion our cause. We found common ground, recognizing that improving the lives of patients requires a multifaceted approach involving legislative changes, increased research funding, and better support for healthcare professionals.

A Promising Future

Advocacy is a long-term and challenging endeavor. However, it was a significant step towards a brighter future for IBD patients and their healthcare providers. The path ahead may be challenging, but with the dedication and resilience of individuals and organizations who share our vision, we have every reason to be optimistic. Our voices were heard, our message delivered, and our commitment reaffirmed.

Featured Photo by Anna Lowe from Pexels