An image of a person in bed. They are under the blankets, and have covered most of their face with a pillow. Their arm lays on top of the blanket, holding a pair of glasses.
Check out Aiswarya’s presentation slides on fatigue & IBD! She shares about the prevalence of fatigue, types of fatigue, risk factors, the impact fatigue can have on IBD patients, and some suggestions for managing fatigue.
A stoplight with red, yellow, and green lights is illuminated on a dark blue night sky.
When you're living with Inflammatory Bowel Disease (IBD), your body becomes its own navigation system. Your body is constantly sending you signals, just like traffic lights do. But unlike the red, yellow, and green lights on the road that we instantly respond to, many of us with IBD have learned to ignore or minimize the "rules" or "drills" that we should follow when our body sends us our own, personal warning signs.
So why is it that we respect a blinking car dashboard, a low battery warning on our electronic devices, and traffic signals/signs more than the signals coming from our own bodies? We wouldn’t ignore our car’s check engine light for weeks (and if we did, we’d expect it to eventually break down). So why do we ignore our body’s warnings? Why don't we listen? As with most things, the answer is complicated.
Here are a few reasons why as people living with IBD, we might forget to listen to these warnings, or try to “push past” them:
Living with IBD means that a few warning lights are always on. That is, we might always have some level of fatigue, bloating, or discomfort. This "always-on" background noise becomes our new normal, and we stop noticing when new signals show up. This is risky because it can lead to ignoring major warning signs or missing slow-building flare-ups.
Our symptoms can become our new normal or "background noise," so we're used to pushing through pain. This means that even when our bodies give us that "red" or "yellow" light signal to slow down or stop due to a symptom/pain that is out of the ordinary, we are still conditioned to push through it. For a lot of us, that is a survival mechanism of having chronic pain (pain that never fully becomes "background noise") in a medical system and society that often tells us to "push through." The world is constructed for those who are able-bodied, and having chronic pain/IBD can force us to sink or swim.
We are often taught to minimize our symptoms, for ourselves and others. Sometimes, doctors dismiss our warning signs, maybe because medical literature doesn't acknowledge all the intricate traffic signals for IBD. Maybe, they're just burned out. Or, maybe doctors—and people in general—can't fully understand the severity of IBD symptoms if they haven't gone through it themselves. Whatever the reason, though, we are conditioned to minimize our symptoms. We are taught that our illness "could be worse." In fact, when explaining IBD to others who don't quite listen closely enough, the false notion that IBD is simply "stomach problems" circulates. So much so that we, ourselves, sometimes say this to others or even believe it ourselves. We don't want to be sick. We wish it was just stomach problems. Being told that our personal traffic lights/signals are simply a result of "anxiety" or "are in our heads" make it easy to eventually believe it ourselves because, why would we want to be sick?
We don’t want to "miss out." Sometimes, we’d rather have a moment of fun—followed by a flare/low-spoons day—than not experience the fun at all. Ignoring the signals can sometimes feel "worth it" since it can give us a small glimpse of what "normal" might be like. We are forever torn between the notions of "respect your body's limits" and "you only live once."
Finding a way to make a choice, despite the consequences, can feel liberating in the short-term. This can look like eating a food that you know isn't "safe" just because you want to make a CHOICE and have autonomy over your own body. As IBD patients, choice is often not in our vocabulary – so pushing through the pain of IBD is often the only way we can feel slightly in control of our own bodies. This is a sense of freedom that we greatly lack as IBD patients.
We don't want to be a “burden.” IBD, in itself, is a burden that we already have to carry. Living with it every day is extremely difficult, and that is an understatement. Even so, we still notice how it affects those around us— our caregivers, partners, family members, friends, co-workers, employers, and even doctors. Carrying the burden alone is never the solution, but it sometimes seems like the right one since it feels wrong to allow someone else to feel even remotely similar to us. It doesn't feel right to allow anyone to be down in the trenches with us—at infusion appointments, at ER visits, at ICU admissions, or at "bathroom sleepovers." It doesn't feel right to allow anyone to feel so wrong, even if they want to. Therefore, we ignore the signs, because if we took action that would mean that we'd need help, whether we like it or not. We'd have to reach out to someone, even if that's just a doctor. Simply alerting your doctor that you've failed another biologic can make you feel like a burden since you might feel as though you're giving them more work. Reaching out to loved ones can be even harder as they will often want to be there for you, and you simply don't want to burden anyone anymore.
We’re afraid of what we’ll find if we stop and really listen. As previously mentioned, we don't want to be sick again. We don't want to discover a new co-morbidity again. We don't want to switch medications again. We don't want to be flaring again. We don't want to go to the hospital again. We don't want to experience medical trauma again. We don't want to put life on pause again. We don't want to miss out again. We don't want to be a burden again. We don't want to lose control again. Listening to your body, and truly paying attention to what it's telling you poses the risk of you having to accept the fact that you might have to go through all of these things again. And at the end of the day, we just want to live—freely. It feels like a constant tug-of-war between surviving and actually living.
The truth is: Your body will always tell you what it needs. It’s just your job to check in—gently and consistently.
Since there is no cure for IBD yet, much of this disease has to do with symptom monitoring and, thus, taking as many preventative measures as possible. I, for one, know that I would like to stay in remission and avoid a flare-up for as long as possible. Even so, I know that's only possible if I listen to my body—genuinely listen. Whether that's taking note of unusual fatigue or nausea, a new sensitivity to food, etc., these are acts of listening to your body and its signals. While we are taught from a young age what traffic lights mean and why it's important to follow them, we aren't taught how to notice and follow the signals that our bodies give us.
A few simple things that you can do to start the practice of ‘checking in’ with yourself and your body:
Create your own ‘traffic light:’ write down some of the signs you notice, when you’re feeling ‘green, yellow, or red!’
Set aside a few minutes each day to ask yourself: What "color" am I today? What makes me that color? What am I feeling, and where am I feeling it? If I’m yellow or red, what needs to change? If I’m green, what can I do to stay there?
Not sure where to start? Here’s an example of my “traffic lights,” and some of the signals I use to check in with myself and my body!
A light blue background with a boarder of green triangles. The text reads “Green means you’re good to go! It doesn’t mean you’re “cured.” With IBD, there’s no one-size-fits-all version of wellness/remission, but it means your body is operating at a manageable and comfortable baseline. When you’re in green, lean into it! Move your body (if you can), make plans, enjoy safe foods, and take note of what helps you stay in this zone. Celebrate ‘green days’ without guilt. They are precious!” There are bullet points with “green light signs” below, the text reads “No Signs of Infection or Illness, Up-to-date on Medications, Overall Mental Clarity, Overall Emotional Stability, Doctor Cleared for Basic Activities, Feeling Energized/Rested, Eating Well-Tolerated Foods, Regular Bowel Movements, Healthy Consistency of Stool, Medications Working Effectively, No Incontinence, No Urgent Bowel Movements, Stable Lab Work, Hydrated, No Constipation, and Minimal Pain/Bloating.” Scattered throughout the page are graphics of a stoplight, a full gas symbol, a fully charged battery, and a green thumbs up."
A light blue background with yellow and black caution tape boarder. The text reads “Yellow is your caution zone. You’re not necessarily flaring, but your body is whispering (or maybe even raising its voice a little). Yellow can be subtle and easy to dismiss, but it’s the most important time to pay attention. In the yellow zone, it’s time to pause and reassess. This may mean: Canceling plans, taking a rest day, eating safe/bland foods, booking a doctor’s appointment, requesting follow-up lab work, reintroducing self-care routines, and more. Yellow isn’t failure. Yellow is wisdom. You’re responding to your body before things worsen. Think of it as preventative maintenance.” There are bullet points with “yellow light signs” below, the text reads “Borderline Lab Results, Mild Changes in Appetite, Changes in Digestion, Low Mood/Increased Anxiety, Sleep Disturbances, Mouth Ulcers, Chronic Nausea, Slight Fatigue/Brain Fog (Not Explained by Medications), Slightly More Frequent/Urgent Bowel Movements, Mild but Persistent Abdominal Discomfort, Decent Consistency of Stool, Mild Joint Pain/Inflammation, Migraines/Headaches, Changes in Skin (Inflammation, Acne, etc.), Worsening Menstrual or Premenstrual Symptoms, or Chronic Bloating.” There are graphics of a yellow stoplight, a half-full gas symbol, a ‘low battery,’ and warning/slow signs.
A light blue background with red EKG patterned boarder. The text reads “Red means something is wrong. It's time to STOP everything else and prioritize your health immediately. This is where IBD forces you to pay attention, whether you’re ready or not. Red means it’s time to: contact your gastroenterologist, take time off school/work, let someone else step in to care for you, follow strict diet/symptom-management protocols, reevaluate or switch medications, get imaging or scopes done, advocate HARD for yourself if you’re not being heard, and go to the ER or urgent care if needed. Red is scary, but it doesn’t mean failure. It means your body is fighting hard and needs you to listen.” There are bullet points with “red light signs” below, the text reads “Ongoing/Sudden Incontinence or Urgent Bowel Movements, Labwork w/ Significant Abnormalities (i.e. Inflammation or Anemia), Complete Loss of Appetite/Ability to Eat, Sudden/Dramatic Weight Loss, Emotional Overwhelm, Not Responding to Medications, Severe Abdominal Pain, Blood in Stool, Mucus in Stool, Dehydration, Fever, Vomiting, or Extreme Fatigue.” There are graphics of a red stoplight, empty fuel tank, ‘stop’ and ‘warning’ signs, and a red low battery symbol.
A few things to remember/keep in mind:
Checking in doesn’t mean obsessing. It simply means being mindful enough to care. Just like we do for our phones, our cars, and our jobs—we deserve to offer ourselves the same level of awareness, support, and maintenance.
Living with IBD doesn’t mean you’ll always be stuck in red or yellow. Some days are green—some weeks or months, even. You deserve to honor those days as much as you manage the hard ones.
This stoplight system isn’t about fear. It’s about empowerment. You are not weak for needing rest, medical support, caregiving, or time. You are wise for knowing when to go, when to slow down, and when to stop.
Your body isn’t the enemy—it’s the messenger. Listen to it. Trust it. Respond with love. Your body is doing the best it can to keep you alive. Let’s return the favor.
Image from @tsvetoslav on Unsplash.
A black and white image of a spiral staircase (view from above).
It all begins with a flare-up. For most of us, the diagnosis comes only after enduring symptoms for days or months, dismissed as a stomach bug. But when the discomfort escalates into a significant disruption, we hear the term “flare-up” for the first time. The symptoms build like a chain reaction, growing worse until urgent medications—usually steroids or antibiotics—are prescribed for relief.
Difficulty with Food
Almost every food item can trigger nausea or an urgent trip to the restroom, making nutrition a frustrating challenge. While some believe short-term food restrictions might ease inflammation, prolonged deprivation causes more harm. In countries like India, navigating diverse dietary recommendations complicates matters. As newly diagnosed individuals we often seek advice in support groups, hoping for recipes or meal plans that won’t worsen symptoms. But in most households, skipping meals isn’t acceptable. Our parents insist on “good food,” unaware that their concern often fuels the next domino.
The Washroom Runs
Initially, the frequent restroom trips are an inconvenience—but soon, they dictate life. The unpredictability makes outings stressful, and hesitation around food becomes constant. Exhaustion follows, leaving us dehydrated, fatigued, and mentally drained. The cycle feeds itself: eating triggers symptoms, symptoms disrupt daily activities, and fatigue makes even basic tasks overwhelming.
The Mental Toll
Beyond the physical struggle, IBD takes an emotional toll. The anxiety of unpredictability, the frustration of adapting to a condition that doesn’t follow rules, and the isolation of feeling misunderstood weigh heavily. Conversations become filtered—friends may not fully grasp the challenges, and outings are haunted by the fear of urgently needing a restroom.
Sleep Struggles
IBD doesn’t stop at meals—it disrupts rest too. Pain, restroom trips, and anxiety make sleep elusive, worsening inflammation and fatigue. Poor rest perpetuates the cycle, making daily recovery harder. Many of us try strict bedtime routines, meal adjustments, or sleep aids to reclaim rest. While perfect sleep remains rare, small efforts help ensure the limited hours of sleep offer some recovery.
Finding Balance
What I have realised after a few misadventures is that the best way to get out of this spiral is to consult your medical team and get the required medications right away. The damage that prolonged inflammation has is quite severe and takes months if not years to reverse, sometimes is unfortunately irreversible, therefore it is not worth the risk of ignoring it.
IBD is unpredictable and exhausting, but it doesn’t define life. Over time, we find dietary adjustments, support systems, and coping mechanisms to regain control. Gradually, these adjustments help restore control—accepting the hard days, seeking support, and celebrating small victories. While flare-ups will always come and go, so does recovery. Life continues, not perfectly, but uniquely. And within that cycle, resilience proves stronger than the condition itself.
Image from meister_photos on Unsplash.
Black text on a light blue background reads “The Relationship between Pelvic Health and IBD.” There are graphics of a pelvis and stomach.
Infographic text reads: One in three women will experience a pelvic floor disorder in her lifetime. One in four women (older than 20) experiences pelvic floor symptoms.
Inflammation -- Individuals with IBD often experience pelvic floor dysfunction, which can manifest as pelvic pain, urinary incontinence, or constipation. The inflammation and irritation associated with IBD can lead to muscle tightness and dysfunction in the pelvic floor area.
Bladder Function — Many patients with IBD report urinary symptoms, such as urgency and frequency, due to the close proximity of the intestines and bladder. Inflammation in the bowel can affect bladder function, leading to discomfort and urgency.
Infographic text reads:
Surgery Implications — Surgical interventions for IBD, such as colectomy, can affect pelvic health. These surgeries can lead to changes in bowel habits and may result in complications like pelvic floor disorders, which can further impact quality of life and pelvic health.
Stress of Managing IBD — The stress and anxiety associated with managing a chronic condition like IBD can lead to muscle tension in the pelvic area. Psychological factors may also exacerbate symptoms of pelvic floor dysfunction, as stress can influence bowel and bladder habits.
Infographic text reads:
My Experiences — I recently visited Mayo Clinic in Rochester to participate in their 2 week intensive pelvic floor therapy program, as I am part of the 25% of women who has experienced pelvic floor symptoms! My time at Mayo left me with hope, homework, and healing! Some tangible tips I can share are to try and use the bathroom whenever you feel the urge or create a routine of using the bathroom at mealtimes, invest in a squatty potty to engage in the correct biomechanics, and practice getting in touch with your body to hopefully reduce the stress going to your pelvic floor (deep breathing and vagus nerve exercises are great places to start!)
Info from: https://www.uchicagomedicine.org/conditions-services/obgyn/urogynecology/pelvic-floor-disorders.
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.
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.
Featured cover photo by Irina Iriser from Pexels.
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.
