The Art of Living in the Moment: A Personal Reflection on Life with Crohn's Disease

By Yeabsira Taye Gurmu, Addis Ababa, Ethiopia

Living with Crohn's disease has been a journey filled with ups and downs, but one of the most valuable lessons I’ve learned is the art of living in the moment. Early on, I was consumed by worries about my symptoms and the unpredictability of my condition. I often found myself dreading social events, fearing a flare-up would ruin my plans.

In the midst of pain or fatigue, I remind myself to pause and focus on the here and now. Simple practices like deep breathing or taking a mindful walk in nature help ground me, allowing me to appreciate the beauty around me. Each moment—whether it’s a warm cup of coffee, a shared laugh with a friend— becomes an opportunity to connect with life, rather than merely endure it.

Flexibility is key. Plans may change, but spontaneity can lead to unexpected joy. Embracing these moments, whether it’s a last-minute outing or simply enjoying a quiet afternoon, reminds me that life is happening now, not just in the future I fear.

Building supportive relationships has been essential. Sharing my journey with understanding friends and connecting with others who have IBD fosters a sense of belonging and comfort. These connections remind me that I’m not alone and that it’s okay to lean on others when I need support.

Ultimately, living in the moment while navigating IBD is about finding peace amid uncertainty. It’s about celebrating small victories, practicing gratitude, and recognizing that even in the struggle, there is beauty to be found. Each day is a new opportunity to live fully, savoring the present despite the challenges that come with chronic illness.

Featured photo Sergey Guk from Pexels.

Why Finding Your People Matters

By Maria Rouse, N.C., USA

It took me nearly 15 years to begin finding community as someone with inflammatory bowel disease. It was a very lonely 15 years. 

I try not to be so hard on myself, since I was first diagnosed with IBD when I was 10. There is not much in the way of accessible peer support for youth with IBD, especially at that young of an age. It was not an option I ever realized could be possible through my health system, and social media as a platform for peer support was just beginning at that time.  

My inability to find community led to a false perception of singular failure. I was the only person my age that I knew with IBD, and consequently internalized ableism spread malignantly within my mind and began marring my conception of myself. 

With the stigma associated with IBD, it is also not something you typically share about yourself with other kids on the playground, or even when you’re getting to know people during orientation at college. I have met several friends that I only much later learned had IBD. 

Ableism is a key motivating force in keeping us silent from sharing our stories and lived experience with others. Ableism is part and parcel of patriarchy, colonialism, racism, sexism, or most of the negative isms that still permeate society. It encourages us to remain alone in our journeys as chronically ill people. 

In a system that often tries to force us to act individualistically and hide our unique qualities for the sake of its imposed and exalted definition of success, building disability community is a light in the darkness. It is in itself an act of resistance and radical vulnerability in a society aims to police abnormality and difference. This can make us believe that our challenges and needs are uniquely too much, when nothing could be further from the truth.  Community reminds us of our humanity as chronically ill people. 

In any setting, making new connections and friends can be terrifying, particularly if you have felt so alone and different all your life as a person with a chronic illness. It can feel especially vulnerable to join a support group discussing such sensitive topics as disordered eating and body image with a whole new groups of people. But forming community through a group such as CCYAN is so worth any initial awkwardness or difficult topics. 

The reality is that peer support is not just about you, although it often is cathartic and restorative to know we are not alone and to learn how others managed the difficulties that IBD created in their lives. Peer support is also an act of advocacy, allowing disabled and/or chronically people to take up space when so often our voices are not heard. Building community is an act of advocacy for yourself and also others who may still face barriers in sharing their experiences. 

In short, don’t wait years to engage with peers who have IBD. Make time for that peer support group meeting, attend that advocacy event, or connect with peers over Instagram. There are typically more obstacles for chronically ill people to engage with peers, whether that is being immunocompromised or having limited spoons or energy. However, engaging with other IBDers in whatever format is accessible to you is well worth the effort. Life is truly all about connections, and the ones you make with those who have very similar experiences as you can be some of the strongest bonds you will experience. You never know what can come out of it, and how the world could be changed for the better. 

Featured photo by Darrel Und from Pexels.

Cathartic Crohn's: A Patient’s Reflection on Stickman - The Vicissitudes of Crohn's by Artist Spooky Pooka

By Peter Park, TX, USA

The experience of extreme abdominal pain that feels, quite literally, gut-wrenching and it comes the debate in my head: Should I go to the hospital or not? In peristaltic waves, I wonder “Can I just bear thru it? I really dont want to go to the hospital.” It’s not just a hospital stay. It’s taking time off work. It’s bothering family to transport and take care of me at 26 years old. It’s wondering when I’ll ever be normal again. These thoughts and feelings are no stranger to me when I experience an abdominal flare, and I am sure it may sound familiar to you as well. Perhaps artistic expression can capture some of the emotions and thoughts we experience in our time of distress. 

Spooky Pooka is a professional illustrator and artist from Brighton, England and a Crohn’s patient and captures his view of Crohn’s disease through this piece. I encourage you to read through his poems and artistic pieces. Of his amazing work, I want to highlight a few pieces that stood out to me:

From the section, Quod Me Nutrit Me Destruit “What Nourishes Me Also Destroys Me”

“A blind conspiracy of T-cells

A dissonance within, a mute fluttering

The dolorous baying of ravenous entrails

The moxi drawn from reticulated limbs

And the world shudders down under black wings

To void all memory

To disgorge all resonance

To vomit all in exegesis of viscera”

Without having spoken to the artist myself, I will not attempt to predict what he was thinking. So, I will speak to share why I found this so fascinating as a medical student who suffers from Crohn’s Disease. The “blind conspiracy of T-cells” is exactly how autoimmune disease behaves. In normal function, T-cells use markers on cells to identify what’s our body marker vs a foreign body marker (which has to be eliminated). In autoimmune disease, that self body marker can be confused with a foreign body marker and cause T-cells to attack normal healthy tissue. In IBD, this happens within the GI tract. A “blind conspiracy” leads me to believe that T-cells act on their own accord, led by misleading signals, and hypervigilant to any suspicious activity. 

Words like “dissonance within”, “to void all memory”, “disgorge all resonance”, “vomit all in exegesis of viscera” describes a state of body that is so critical of itself, ready to eliminate any imperfection or any disconnection from the true self that it destroys the entire body. It reads as if the T-cell is a delirious warrior who once was a hero of sorts in his right. But now, this T-cell warrior has lost his way, driven mad by his rage, and killing his own people in frenzy. 

The piece captures the human skeleton with a deer skull and antlers kneeling while holding its belly as old weeds spill out. The background shows perhaps floating T-cells with human eyes. It captures the visceral pain of an abdominal flare - a posture I personify with too easily. It also captures the despair against the T-cells in their march for self-destruction. It seems nothing can escape itself. 

Despite this grave depiction, Spooky Pooka ends the graphic series with a final poem that implies a sense of hope. In the section Dolor Hic Tibi Proderit Olim “Some Day This Pain will be Useful to You”, it is the ending lines I reread over again.

“The tree’s womb may regurgitate old souls

If only for one moment…

It may grow flesh like life”

I’m not sure what it means. I’m not sure why it fascinates me. Perhaps I am desperate to find meaning and purpose behind my suffering. That my abdominal pain will somehow manifest as strength in my nearly malnourished body. Or that my constant fatigue and uncontrolled bathroom breaks is somehow a sign of strength. During my hospitalizations, when I was most alone, I would think that “maybe suffering is just pointless suffering.” 

But this poem and the picture behind it gives me hope. Like branches of a tree, my suffering can extend out and reach out towards others. To grow from untreated soil and serve others who will walk the same path. A hand to hold in suffering together. 

Featured photo by Soonam Wooeser from Pexels.

Check out the inspiration for this post on Spooky Pooka’s website.

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.

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.

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)

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

When One Diagnosis Leads To Another…

By Maria Mutka from NC, USA

“Don’t you have enough chronic illnesses?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

References:

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

2.  Idiopathic Hypersomnia (Mayo Clinic)

Featured photo by Medhat Ayad from Pexels.