The Never-Ending Cycle of IBD

The Never-Ending Cycle of IBD

By Selan Lee from the United Kingdom

Many things in life are cyclical: the seasons, fashion trends, and the moon’s phases. The one thing we all hope isn’t cyclical is illness. Who wants a never-ending cycle of health and disease? But for those who are chronically ill, it is an unfortunate truth that I previously thought I had accepted - until three months ago.

Three months ago, the symptoms that had started it all returned: frequent diarrhoea, bloating, gas and nausea. In retrospect, stress seems to be a determining factor in my cycle of Crohn’s. My first flare was during the final months of my A-levels - a set of exams that would determine my future according to my 18-year-old self. My second and current flare began two weeks before my graduation and coincided with the final interview for a job I desperately wanted to pass. Unfortunately, the consequences of the stress-inducing circumstances were also cyclical. I severely underperformed in my exams and panic-attacked my way to a re-sit the following year. I didn’t pass the interview and was faced with ending university without a stable job to move on to. Healthwise, like the first flare, I was admitted to the hospital soon after graduation.

Maybe because I had experienced five years of relative good health since my diagnosis, I thought I had accepted the chronic nature of Crohn’s. Despite becoming resistant to a few biologics - I went to university, sourced and worked in a consultancy for my placement year, attended my first concert, joined a panel for young adults with IBD and was able to socialise with friends and family without much concern. My brief period of normalcy had blinded me to the fact I hadn’t really accepted the cyclical nature of my condition, and to be honest, no one with IBD or a chronic illness does.

I remember when someone asked during a panel how people with IBD cope, and the members and I all said hope helped us to cope. Naively, I equated coping with accepting. That’s far from the truth. I can cope with my biologic no longer working as there will be another one. I can cope with waiting for the night shift doctor to prescribe paracetamol for my abdominal pain. I can cope with forgoing foods and situations that will worsen my IBD. But I can’t accept that this will happen again. Understanding and coping are one thing, and acceptance is another.

How can I accept that I will progress through life feeling alone because of my IBD? Like I am sitting on an ice floe floating past all of life’s possibilities. Maybe it is pessimism talking, but living with IBD can be akin to the myth of Sisyphus. Many of us will spend our lives pushing the boulder of IBD to remission - with some, like me, falling back to flare. But maybe, in the words of Albert Camus, I will achieve happiness in this absurd repetition and be satisfied regardless of the outcome. Then again, Captain Raymond Holt says, “Any French philosophy post-Rousseau is essentially a magazine.” [1] - so I will wallow in my pessimism for a while. I might be able to see the brighter perspective of Camus and Terry Jeffords once my new meds prove to be successful.

References

1. “Brooklyn Nine-Nine” Trying (TV Episode 2020) - IMDB. (n.d.). IMDb. https://www.imdb.com/title/tt10322288/characters/nm0187719

Featured photo by Frank Cone from Pexels.

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

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.

That is my partner, Crohn's.

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.

Humour - The Best Defense Against the Realities of Chronic Illness

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 the cared for becomes the carer.

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

“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/