We are all pandoras, each with our own boxes - but we all have hope.

By Selan Lee from the United Kingdom

Suppose you live in the UK and have any interest in inflammatory bowel disease (IBD). In that case, you will likely have recently seen news articles in which researchers from University College London, Imperial College and the Francis Crick Institute announced they had found a section of DNA present in 95% of people with IBD, which causes an excessive immune response and consequently inflammation.[1] This news has been greatly welcomed by many in the IBD community here - myself included. However, the feelings the announcement generated are weirdly reminiscent of a conversation I recently shared with others with IBD.

Last month, I met with members of the Young Adult Advisory Panel - a fantastic group committed to helping Crohn’s and Colitis UK meet the needs of the IBD young adult population. As we walked to the social venue, the conversation led to how we each coped with the often tumultuous nature of IBD. It soon became clear that the common thread for all of our coping methods was hope. Some hope for research breakthroughs. Others hope for a reduction in flare symptoms, and a few hope for a good blood test result. 

Living with a chronic illness can quickly diminish hope for many and unfortunately lead to poor mental health. Research suggests that around a third of individuals diagnosed with a life-changing chronic illness will experience symptoms of depression.[2] But, as so many of us with IBD will tell you - hope is never truly extinguished. 

Over the years, hope has taken on several names—the indomitable human spirit, desperation, or perseverance—but it has never disappeared from the human consciousness. Unfortunately, IBD and chronic illnesses have also been present in humans’ lives for an equally long time. But instead of looking at this longstanding relationship as parasitical, I rather see it akin to the prevalence of the myth of Pandora’s box throughout history.

We all know of Pandora’s box, a myth that warns of unchecked curiosity and disobedience when Pandora unleashes evil into the world when she opens a box left in her care by the Gods. Despite all the horrors she releases, hope remains and enters the world, providing humans with the resilience necessary to live in a world filled with such evils. This story has been used for many reasons: to curb curiosity and provide hope. We’ve all faced bleak circumstances where we have relied on hope to see us through.

Life with IBD is no different. We have all faced negativity in some form with IBD - whether that be a medication failing to work, health professionals denying you agency or being limited in your capacity to spend time with friends and loved ones. But like Pandora, we know that there is hope, and with that hope, in the words of Martina Sazunic, we use that hope to “build a ladder” and make the best of our respective situations to reach what we are hoping for. Thus, we are all Pandora.

We all are Pandoras, each with our own boxes, living with the negativity wrought by these boxes—but we all also have hope. So, while that breakthrough in research might, in some eyes, look like a minor step forward in the ambiguity of IBD - it is also a reminder that hope is what empowers us to continue advocating for better lives with IBD. So, from one Pandora to another, hope is in your box - don’t forget that.

References

1. Gallagher, J. (2024, June 5). Major cause of inflammatory bowel disease found. BBC News. https://www.bbc.co.uk/news/articles/c1wwdd6v2wjo#:~:text=A%20major%20cause%20of%20inflammatory,excessive%20inflammation%20in%20the%20bowels.

2. Professional, C. C. M. (n.d.). Chronic illness and depression. Cleveland Clinic. https://my.clevelandclinic.org/health/articles/9288-chronic-illness-and-depression

Featured Photo by Pixabay from Pexels.

Moving

By Zahraa Chorghay, CA, USA

skin stretching like tarp over pillars made of bones

if the turtle carries its home on its back

why do I writhe to make home of this body?

on the cove, the colony of sea lions basks together

skin and blubber resting against each other

lazy afternoons with my family

sprawled on the couch, we swap stories and laugh

on the streets, lilac-coloured flowers erupt on branches

jacaranda petals dancing gently in the breeze

on the dance floor with my friends

music flows through us, bodies swaying to the beat

on the beach, ocean waves crash into the sand

salty water meeting the earth again

my head on his shoulder

nested against each other, joy coursing through our veins

though the cormorants can soar far and wide, they live in groups

but this solitary bird flew far from her roost

(with rotting insides threatening treachery, always)

now gliding in the deep blue skies, untethered by sea or land

will she be lost forever to the wind or someday find her perch?

Going From 0 to 100: The IBD Rollercoaster

By Maria Mutka, N.C., USA

I was planning on writing this article about the meaning of IBD community support in my life. But as all IBDers and folks with chronic illnesses know, sometimes the best laid plans have to change based on how you're feeling. 

I recently had a wakeup call from my complacency during the longest remission of my life. My biologic medication has done such wonders for not only my daily quality of life, but the impact of my ulcerative colitis on my body. I will never forget my doctor's amazement at my last colonoscopy a couple years ago when they were unable to identify any active disease. 

When they said they could no longer see any ulcers, I was on cloud nine. Apparently, hundreds of ulcers that had taken root in my digestive system had vanished. A true miracle drug. Since I started my biologic medication a few years ago, I have had occasional hiccups, but my symptoms were 95% reduced from what they had been. 

Due to a switch in my modality of medication, from an infusion to an injection pen, I have had some delays in receiving the medicine, largely due to a lengthy prior authorization process (nothing new for many IBDers and folks with other chronic illnesses). Because of this delay in getting my treatment, I started experiencing my old pattern of symptoms, seemingly back with a vengeance.

Nausea, near vomiting, extreme cramping, frequently going to the bathroom - the works. Maybe it was just because I haven't had these symptoms in a while, but I truly felt the worst I have felt in a couple years - at my lowest of lows health-wise. 

This was undoubtedly compounded by my recognition of the precarity of my health, the delicate balance that my health rests on daily in managing my IBD that I had neither realized nor accepted. Just by going a week without my medication, slightly spicy foods that I have come to enjoy on occasion since my remission knocked me for a loop. Having these symptoms after being only seven days overdue for my medication put me in disbelief - how could my ulcers and inflammation be all gone, as my doctors had told me? My ulcerative colitis seems to have been barely there, perhaps hiding underneath the surface, waiting for one slip up or mistake in receiving my medication to rear its ugly head.

Now I can fully acknowledge that experiencing some of these symptoms for a little while is not much in comparison with what I've experienced in the past, or what others often go through. I am extremely grateful to have access to the medication I need to maintain my health and quality of life. But I cannot again take for granted how close I can be at any given moment to another flare. Even when I have been doing extremely well for several years on a medication that clearly is highly effective for me. 

These moments are important reminders of the truly unpredictable and chronic nature of the disease, and how, even when you are doing everything you can to maintain your health, it's ultimately not always up to you. It is, however, a lot easier to deal with emotionally if you take the journey one step at a time and prepare yourself to experience the one thing that IBD can predictably be: unpredictable.

Featured photo by Digital Buggu from Pexels.

That is my partner, Crohn's.

By Selan Lee from the United Kingdom

Hello, we haven’t yet been introduced,

My name is Selan and that over there is my partner - confused?

Many do get a little surprised at our coupling,

But once you make the acquaintance of Crohn’s - they tend to cling.

How did we meet? Well, I can’t quite remember,

It might have been in a GP office, an A&E cubicle or before all of that in December,

You see, it is quite difficult to pinpoint when we exactly made our first encounter,

But whenever it was, I definitely floundered,

I couldn’t go to school or even sit down without Crohn’s interrupting,

It seemed my body, my energy, and my mind were all suffering.

I’m not going to say the beginning was fun and joyful,

Our relationship back then was awful, painful and stressful,

It took an incredibly long time to find myself in this partnership and I’m definitely not the same person I was before,

But now simply existing is no longer a chore,

No - now we have a rapport.

We’ve got our strange little milestones to mark our progress,

First concert without major toilet-related distress,

Was Harry Styles in Wembley with me wearing a blue dress,

The first fizzy drink to not cause a tummy gurgle,

An ice-cold Coke without a single audible burble,

Going on six years and passed our wood anniversary,

And I can say our partnership has mellowed considerably,

I can’t guarantee the future will be as smooth as we are now,

But knock on wood - I’ll manage that flare and its symptoms somehow,

Because that’s how I’ve made it thus far,

By looking forward and making light of the medically bizarre,

The fiery inferno of emotions Crohn’s once blazed,

I can say looking in the rear-view mirror of hindsight - is now a smoky haze,

Crohn’s will never leave, and I will never leave it,

As I said before - once it finds you it tends to stick,

But since the day our union was christened in that lone hospital room,

I’ve built the resilence, dark sense of humour and grit to see hope bloom,

So… allow me to reintroduce,

That is my partner Crohn’s disease who is a recluse,

We still occasionally squabble and argue on if we go out,

But I’m definitely in control - without a doubt.

Featured photo by Marcelo Chagas from Pexels.

Confronting Crohn's Disease as a Young African Woman: Challenges and Opportunities

By Yeabsira Taye Gurmu, Addis Ababa, Ethiopia 

My journey with inflammatory bowel disease (IBD) began in my late teens,  when I started experiencing debilitating abdominal pain, diarrhea, and  unexplained weight loss. At first, I tried to dismiss the symptoms,  attributing them to a common stomach bug or something I had eaten. But  as the weeks turned into months, I knew this was something much more  serious.  

Navigating the Health care system  

Getting an accurate diagnosis was perhaps the biggest hurdle I faced. In Ethiopia, access to specialized gastroenterology care and diagnostic tests like colonoscopies is extremely limited, especially outside of the major cities. It was difficult and time consuming to obtain an accurate diagnosis of Crohn's disease, even then. Diagnostic tests like colonoscopies and endoscopies were difficult to come by; there was a long waiting list. During this time, my health only continued to decline, leaving me in constant pain and with debilitating fatigue. Watching my body deteriorate as doctors struggled to diagnose the problem, I recall feeling powerless, ”It was an extremely frustrating and isolating experience."  

Grappling with Limited Treatment Options  

Once I finally received the Crohn's disease diagnosis, I then had to confront  the daunting challenge of finding effective treatments. The older medications, such as steroids were relatively accessible, but the newer biologic therapies recommended by my gastroenterologist were simply unavailable at the time and are presently financially out of reach. 

Confronting Cultural Stigma  

On top of the medical challenges, I also had to confront the cultural stigma surrounding my condition within my community. Some traditional medicinal practices view digestive disorders as a result of spiritual  imbalances or curses, rather than a legitimate medical issue. There were times when I felt a great sense of shame and isolation. The fear of judgment and discrimination made me avoid social gatherings and hesitant to share my diagnosis. This only compounded the mental and emotional toll of living with a chronic, often-misunderstood condition.

Finding Strength in Community : A Hopeful Future  

Despite the daunting obstacles, I refused to give up. I sought out support from local patient advocacy groups, Crohn’s and Colitis Ethiopia. Where I connected with others facing similar struggles. Together, we are working to raise awareness about IBD and lobby for improved access to essential medications and specialized care. 

Today, while my Crohn's disease remains a constant challenge, I am better equipped to manage my condition and live a fuller life. I continue to share my story, in the hopes of breaking down the stigma surrounding IBD in African communities and inspiring others to persist in their own battles. My journey with Crohn's has been arduous, but it has also made me resilient,  empathetic, and determined to create positive change, I reflect. "I may not be able to control this disease, but I can control how I respond to it - and that gives me strength to keep fighting."

Featured photo by Abuti Engidashet from Pexels

Humour - The Best Defense Against the Realities of Chronic Illness

By Selan Lee from the United Kingdom

In the words of Chandler Bing, “I started using humour as a defence mechanism” - though for me, it is not a consequence of my parents splitting up (just to reassure you, they’re still happily married), but rather a result of my chronic illness.

While there have been difficult moments in my life before and after my Crohn’s diagnosis, I’ve noticed that one of the most significant ways I have coped and helped my loved ones cope with the negativity IBD often brings - is with humour. More often than not, I’m somehow making a joke about poo, the absurdity of hospital scheduling or the horrific taste of Fortisip nutrition shakes. But I had also used humour to make light of bleak health outcomes - for example, when the second of my biologics stopped working, or surgeons tried to push for a stoma just before exams. 

As a Psychology undergraduate, I know this technique is a classic example of an emotion-focused coping mechanism in which I utilise humour to manage the stressful emotions that IBD bring. However, I know as a thinking and feeling human being, if I don’t use humour, it is very easy to fall into the grips of the stress and negativity of chronic illness[1] - and similarly for those caring for us[2]. So, I would like to share some moments where I’ve found humour in my experience with chronic illness, and I hope you will find some, too, in your chronic illness journey.

#1 When you're using the same medication as a lady in her 80s -

Any biologic prescribed to someone with IBD has a high probability of also being prescribed to an elderly individual with arthritis. Given that IBD and arthritis are both inflammatory diseases, just attacking different body parts, it makes sense a twenty-something with Crohn’s will be given the same as arthritic Ethel in her 80s. Thus, I find it infinitely hilarious when I walk into the medical day unit and watch as two or three seniors stare at me in curiosity. I’ve seen many an old bitty’s eyes go wide when they hear that I was born in the year 2000. Confusion when the scales reveal I’m on the heavier side and not outwardly weak or frail. But the best bit of this situation, which still makes me chuckle to this day, is what rarely happens at the end of an infusion. 

Once an infusion is complete, the IV is removed, and a cotton ball is placed on the site to prevent bleeding. Usually, slight pressure and a little bit of time are enough for a clot to be formed and any chance of bleeding out in a medical bay to be reduced to virtually zero. However, on one rare occasion, not enough was applied, and as I got up to gather my things - I felt a warm sensation over the back of my hand. Looking down, I noticed a few drops of blood on the back of my phone case and some staining on the denim of my jeans. Turning to look at my hand, I realised the warm sensation was not my hand warming up after the cold IV stream - but blood oozing out from the infusion site. My hand looked like a Halloween decoration. Perhaps as a result of my lack of aversion to blood or my fatigue, I quietly and calmly asked the nurse for help. What I didn’t realise until I stood there waiting as the nurses scrambled to get the gauze or alcohol wipes was that arthritic Ethel had witnessed a young whippersnapper with a bleeding hand look at said bleeding hand with no fear and simply say, “Excuse me” as I pointed with my non-bleeding hand to the bloodbath - like a complete psychopath. I saw a look of horror and fear of myself, not the blood, in her eyes, and it still makes me laugh to know that she probably told everyone she knew about the psychopathic twenty-something she met in the medical day unit.

#2 A little too familiar with the Bristol Stool Scale -

It is a right of passage to be introduced to the Bristol Stool Scale following a diagnosis of IBD, with 1 being akin to rabbit droppings and 7 to swamp water. My mum quickly started using numbers to check my condition after this introduction. In the early days of a flare, I would be asked, “Number 4, 5 or 6?” as soon as I left the bathroom. However, it also became a way for us to assess unappetising food: a dodgy-looking shepherd’s pie, a 5. A little too watery chocolate lava cake, a 7. It didn’t take too long for us to realise that this scale may not be as appetising to overhear at the dinner table as it was funny for us to quip.

#3 The best way to enjoy a Pepsi is without the fizz -

You develop a strange relationship with food when you have IBD, and for me, during a flare or in the few weeks leading to my infusions, I find fizzy drinks hard on the gut. The carbon dioxide seems to exacerbate the pain and discomfort. But that doesn’t mean the cravings for certain beverages disappear. 

On one such occasion during my flare, I craved a Pepsi - but didn’t want the fizziness it came with. Thus, I hatched a plan. As my parents were preparing to leave for Costco while I convalesced at home, I told them it would be a good idea to get some food, preferably a hot dog, to enjoy themselves and our dog. They returned with hot dogs and, more importantly, cups filled with Pepsi. While they enjoyed their food, I kept an eye on my Dad’s Pepsi. I knew he would have drunk a cup at the store, and this was his refill. I also knew that he never fully finished his second cup of Pepsi. Therefore, I waited for the moment he inevitably left the partially-full cup on the table. Once he left the table, I took the cup, checked the contents and once satisfied - I hid the cup in the fridge behind some condiments. The next day, I gleefully took out the flat Pepsi and downed the drink without the slightest hint of effervescence. I have yet to have a similarly satisfying food or drink experience.

References

1. Naylor, Chris & Parsonage, Michael & McDaid, David & Knapp, Martin & Fossey, Matt & A, Galea. (2012). Long-Term Conditions and Mental Health: The Cost of Co-Morbidities. https://assets.kingsfund.org.uk/f/256914/x/a7a77f9f6b/long_term_conditions_and_mental_health_february_2012.pdf 

2. Lim, Jw., Zebrack, B. Caring for family members with chronic physical illness: A critical review of caregiver literature. Health Qual Life Outcomes 2, 50 (2004). https://doi.org/10.1186/1477-7525-2-50

Featured photo by Fernanda Lima from Pexels

When Medicine Helps but also Hurts: Biologic Drugs’ Side Effects

By Maria Mutka from NC, USA

The last thing out of the million concerns swirling around my mind while administering my newly prescribed biologic drug was the worry that I might have extremely uncomfortable and visible symptoms from my medication. Especially not when it was about a month and a half to two months after first injecting the medication when I noticed my first symptom: my hair falling out more than usual.  

I dismissed my hair falling out as a potential side effect of the flare that I had had earlier that year which led to the medication change. I had gone from mesalamine to prednisone to budesonide treatments over a period of months, all to no avail. It was the second semester of my first year of college, and all I wanted was a little bit of stability while I settled into college life. Instead, I was occupying the one private bathroom in my dorm constantly or running as quietly as possible to the public bathroom on my floor in the middle of the night. 

I had doubts at the beginning of the school year about whether college could be viable for me. I was pleasantly surprised during my first semester when my symptoms quelled, and I made good grades and new friends. I rode that high into my second semester feeling like I had things relatively under control. That all came crashing down very quickly.

When my gastroenterologist prescribed me a biologic drug, it was nerve-wracking to hear the potential side effects and impact the drug could have on my body, particularly my immune system. At that point, however, I was ready to try anything to get back to a relatively “normal” baseline. After my first few injections, I felt relieved to notice that my symptoms were calming down. 

While I was feeling better, I started to notice clumps of hair appearing on the floor or in the shower. It was easy enough to dismiss that. I had summer classes to focus on and my hair was the least of my worries. Then I noticed some sores and psoriatic plaques on my scalp that were irritating and uncomfortable, but nothing I still couldn’t ignore. When I thought about it more, however, it was a headscratcher. I hadn’t changed detergents or personal care products, so if I was having an allergic reaction the cause was not obvious.

Then came the symptom that was a bit harder to ignore: small abscesses appearing on different areas of my body. I went to the university health clinic several times to have them drained. My providers acknowledged that these did not just appear to be in-grown hairs or a reaction to the intense summer heat. There was something more going on.

After getting a couple of these abscesses, I began to think more critically about my new medication. That was the one new factor in my life. My food, personal care products, and surroundings had largely remained the same. 

As I returned to college for my sophomore year, I hoped the fall weather would help cool this strange reaction that was taking place in my body. Almost immediately when the semester started, my whole body broke out in a strange, blotchy rash. My eyes were swollen but I had no other symptoms that indicated anaphylaxis such as my throat closing or shortness of breath. 

After this last episode, when no provider could come up with an explanation for my odd progression of symptoms, my gastroenterologist took me off the biologic drug I had been taking. Fairly soon after that, things went back to normal. While my gastroenterologist would never say that the biologic drug caused the reaction, and it’s true that there’s no way to definitively establish a correlation between it and my symptoms, I can say that things only got better when I stopped that medication. Now I was back to square one, but at least with the knowledge that the biologic drug I had been on was not going to be the answer.

Most often, side effects or adverse events related to biologic drugs happen much sooner after medication administration than in my case. They typically also feature clearer signs of a reaction such as shortness of breath, chills, redness, itchiness, itchy eyes, or itchy lips. While these symptoms are fairly uncommon, rarer reactions can involve central nervous system disorders, cardiac issues, and Lupus-like syndrome. 

There can be a lot of fear built up around biologic drugs, however for many IBD patients they can work wonders. I’m on a different biologic drug now and have experienced the longest period of remission that I’ve ever had in my life. It’s an amazing feeling. 

Nonetheless, it is important to be on the lookout for side effects when starting any new medication. It might be easy to dismiss the list of side effects in tiny print on the medication safety sheet or as they are read out to you by a clinician, but it’s critical to be aware of when a medication may be harming rather than helping you. Stay vigilant for the first few weeks and even months of a new medication and keep track of how your body is feeling and reacting. Not every medicine may be right for you, and it’s important to let your provider know if you feel like your medication is negatively impacting your health. Even if you feel like there may not be a better treatment option out there for you, there are likely more options than you think. It is your provider’s job to work with you to find the treatment that best fits your body and your needs.

Source: Side Effects of Biologic Medications - Johns Hopkins (hopkinsarthritis.org)

Entering Defense Mode! The Gut-Brain Response To Perceived Toxins

By Zahraa Chorghay, Montréal

It’s an uncomfortable feeling, your insides pushing upwards through you, making you retch, sometimes resulting in you vomiting the contents of your digestive system, and other times, just persisting within you. When you’re nauseous, it’s difficult to think about anything, much less do something. You just hang in there, praying for that sensation to disappear (either on its own or with medication), or ffs to just throw up already, so you can finally stop feeling utterly disgusting.

Nausea is a common complaint not only in people with inflammatory bowel disease (IBD) but across many different conditions like “stomach flu” and other infections, sensitivity to strong smells, morning sickness during pregnancy, or even in response to certain medical treatments (such as in cancer). There is a lot of advice floating out there on what you should or shouldn’t do to deal with your nausea (e.g., NHS, accessed 2024). 

Here, I focus on the why and how of retching, nausea, and vomiting by discussing [just some of] the basic neurobiology underlying these uncomfortable symptoms. 

Defending against toxins

When a toxin is sensed in your gut, your brain goes into defense mode and orchestrates retching, nausea, and vomiting behaviours. This coordinated response does not only expel the toxin from your body, but also helps prevent future exposure to that toxin by forming an unpleasant association between the toxic substance and your bodily response. 

Typically, a toxin will get into your gut through contaminated food that has toxin-producing bacteria, or through direct ingestion of a harmful substance. For example, during excessive drinking, your liver can get overloaded and unable to successfully filter out all of the alcohol from your blood (Cleveland Clinic, accessed 2024). Sensing the elevated blood alcohol levels, your brain triggers its coordinated motor responses such that you throw up, removing excess alcohol from your body. Furthermore, earlier episodes of inebriation teach you how much alcohol is too much for you (i.e. how many drinks does it take before you start throwing up or pass out?), so you are less likely to consume excessive liquor in the future.

Additionally, in autoimmune diseases like IBD, the body mistakes its own tissue as pathogenic, so the nausea you experience in IBD may be from your body mistakenly assuming you were exposed to toxins. In response, as it does during toxin exposure in an otherwise healthy body, the brain triggers retching, nausea, and vomiting.  

The gut-brain pathway

The defensive response relies, firstly, on receptors in your gut and other peripheral regions of your body detecting the toxin, such as when the toxin has a chemical structure that can bind to a chemoreceptor (chemical receptor), changing its conformation (shape). This change then leads to a cascade of chemical signals in your gut cells, which then relay the information through the vagus nerve to the brainstem. In the brainstem, a region called the dorsal vagal complex (DVC) acts as the brain’s relay centre, receiving information from your organs as well as sending information to other brain regions, including the ventral medulla and hypothalamus (Hornby, 2001). These areas of the brain coordinate retching, nausea, and vomiting behaviours. 

For example, Xie et al. (2022) studied the toxin-induced defensive response by injecting mice with a bacterial toxin called Staphylococcal enterotoxin A (SEA). In these mice, in response to SEA, gut enterochromaffin cells release a molecule called serotonin. (Yes, this is the same serotonin you may have heard of as the “feel good” chemical in the brain! But here, serotonin has a different function as a gut messenger.) Serotonin release then activates sensory neurons in the vagus nerve, which carry the information to a specific subset of neurons in the DVC. These brainstem DVC neurons in turn activate a specific neuronal population in the medulla. Together, the DVC and medullary neurons coordinate motor signals, sent also via the vagus nerve to the site of action in the body, thus inducing the mouse’s retching behavior. 

Keeping this cascade of signals in mind, newer medications to prevent nausea or vomiting are designed to act on receptors in vagal nerve endings or in the DVC. For example, you can prevent vomiting through blocking neurokinin-1 receptors (NK1R) in the DVC or by activating cannabinoid receptors (CB1R) – also in the DVC – using the active component of marijuana called THC (delta(9)-tetrahydrocannabinol). 

Importantly, while scientists have made strides to understand the gut-brain pathway, including the impact of the gut microbiome, we still have many knowledge gaps. The mechanisms underlying gut sickness responses are a subject of active investigation, and can lead to recognizing new therapeutic targets to dissipate the discomfort of nausea in IBD, infection, oncology, and beyond.

Featured photo by MART PRODUCTION from Pexels

Laughing Through the Flare-Ups: A Comedy of Tummy Troubles

By Yeabsira Taye from Addis Ababa, Ethiopia

In the world of IBD, where troubles arise,  

I found a way to bring laughter, a humorous surprise.  

Though the pain is real, and the challenges persist,  

A funny poem about my IBD, let's coexist!  

Oh, my dear intestines, you mischievous pair,  

Always causing chaos, it just isn't fair.  

One day you're calm, the next you're a riot,  

Leaving me running to the bathroom in quiet.  

Oh, the adventures with food, what a ride,  

A guessing game where my gut decides.  

One day it's a friend, the next a foe,  

Leaving me wondering which way to go.  

From endless doctor appointments to scopes so grand,  

I've seen my insides more than I'd ever planned.  

They explore my colon like an uncharted land,  

While I lie there, wondering how I got so grand. 

Oh, the joy of explaining my condition to friends, 

As I try to make light of the awkward trends. 

They offer well-meaning advice, bless their hearts, 

But I know deep down, they can't grasp the arts.  

So here's to you, with your IBD tale,  

Finding humor even when things derail. 

In laughter, you'll find strength to carry on, 

Turning your trauma into a comedy marathon.  

Remember, my friend, in the midst of the strife, 

Laughter is the best medicine in life.  

So embrace the funny side, let it be your guide, 

And conquer IBD with laughter as your stride.

---

Featured photo by Tim Mossholder from Pexels.

When the cared for becomes the carer.

By Selan Lee from the United Kingdom

I’m not the biggest believer in Astrology. I might complete an occasional zodiac quiz or look up my horoscope when life seems complicated - but I’m not one to base my whole personality around my status as an Aries. However, in light of recent events - I’ve become a bit more of a believer. 

At the start of 2024, I made my annual Google search on the predictions for the Lunar New Year. What started as a little harmless fun quickly turned depressing. My fortunes for 2024 looked bleak as a dragon zodiac, and now I can see the start of my 2024 misfortune. Coincidentally, my mum began experiencing balance and coordination issues at the same time as my feeble attempt to predict the future. Following visits to the GP and A&E, a transfer to a ward and surgery - Mum has been relieved of the meningioma that started it all. I realised our roles had been reversed for the first time on Mother’s Day. I, who had been cared for as a daughter and a daughter with Crohn’s disease, had become the carer and guardian of a mother who’d been caring from the moment she found out about me. 

Only now that she is home, with the benefit of retrospect, I realise I had a small glimpse into a carer’s experience. Many of us with chronic illness gripe that often, and quite rightly, our experience is never fully understood or communicable. But the trauma and sacrifice of carers is something even less understood. My mum would never call herself a hero or a loyal supporter, as many news headlines and commenters like to attribute to partners, loved ones and friends of chronically ill people. It is a title that never sits well with her and similarly with me following the last few months. 

I sat next to her at every medical appointment. I anxiously walked the hospital corridors during her surgery. I memorised every detail of the conversations with the nurses. I visited her every day and filled in every piece of paperwork. Just like she did these last 6 years. 

The roles had thoroughly been reversed, and not once did I feel heroic - I felt helpless, even more than I did when I was freshly diagnosed.

With the advantage of improved research and awareness, more and more people are aware of the intersectional and complex identities of people with chronic illness, as exemplified by the IBD Disk (Ghosh et al., 2017). However, this level of understanding and empathy has yet to be mirrored in the perception of carers. They are still a monolith of loyal, self-sacrificing heroes - not deeply traumatised, frequently tired and overwhelmed soldiers.  

I am fortunate to have someone and a support network to rely on to come with me to hospital appointments or to talk to when being sick becomes a little too tough. I am acutely aware they are one of the reasons I’ve been resilient with my IBD (Keefer, 2018). Their endless care, kindness, and generosity are never lost on us, but as Atticus Finch said, “You never really understand a person until you consider things from his point of view...until you climb into his skin and walk around in it.” The experience of chronic illness can never be fully understood, but so is that of the carer. Some will be lucky to encounter this responsibility later in life. Still, one thing is for sure - it is one that no one is ever truly prepared for, and though it shouldn't be lauded to a pedestal which diminishes the status of the chronically ill person - it definitely is one that I believe deserves the same comprehensive appreciation.

Featured photo by Matthias Zomer from Pexels.

References

1. Ghosh, S., Louis, E., Beaugerie, L., Bossuyt, P., Bouguen, G., Bourreille, A., Ferrante, M., Franchimont, D., Frost, K., Hebuterne, X., Marshall, J. K., OʼShea, C., Rosenfeld, G., Williams, C., & Peyrin-Biroulet, L. (2017). Development of the IBD Disk: A Visual Self-administered Tool for Assessing Disability in Inflammatory Bowel Diseases. Inflammatory bowel diseases, 23(3), 333–340. https://doi.org/10.1097/MIB.0000000000001033

2. Keefer, L. (2018). Behavioural medicine and gastrointestinal disorders: the promise of positive psychology. Nature Reviews Gastroenterology & Hepatology, 15(6), 378–386. https://doi.org/10.1038/s41575-018-0001-1