The Acceptance and Struggle of a Childhood IBD Diagnosis

Being a kid is supposed to be a whimsical experience that one treasures and wants to have back. We long for those easier, good old days. But, when you are diagnosed with Inflammatory Bowel Disease at the age of 8, those childhood hopes can get lost. 

When I was diagnosed with Crohn’s disease, I did not know what it was. I remember telling my friends and them thinking I kept saying “Crow’s disease” (granted, I did have a speech impediment). Honestly, even I couldn't fully understand what was going on with my body. I felt alone, isolated, and trapped in my body. I felt frustrated because of the lack of support I felt from my peers and the lack of communication that I could provide to the people in my life. I felt confused as to whether I was being too dramatic or if I was really as sick as I thought I was. It becomes hard to trust your body and self when—for so long—your symptoms are not understood. Still today, these emotions can flood my body when I think about my diagnosis or even have to deal with unrelated health procedures. The body has a mysterious memory intact.  

 In response to these events, I have found that I tend to forget things related to it. To be honest, pretty much everything—specifically during my diagnosis phase of life—is most often a blur. Being diagnosed as a child really made me deeply struggle with the faults of reality and mortality and sickness early on. My body is easily triggered by hospitals or doctors. Whether my response bodily or emotional, I cannot immediately make sense of it all at the time. 

I often struggle making sense of my diagnosis. Being diagnosed at such an early age, the disconnect between what was real and fake is hard. How could it have such a constant effect on my life when I forget most details surrounding it?  It can be hard when you are surrounded by so many people who have such an understanding of their diagnosis and can write such beautiful lessons they have learned when most days I do not even remember what age I was diagnosed at. It is so easy to compare journeys, thinking your IBD is not as bad as the next, or that you feel alone with it. But what we can hold is that we don't have to be positive all the time. It can be painful and we can hold both the pain and the lessons we have learned. We do not have to make sense of our diagnoses. There does not always have to be a bright side to everything and that does not make you less of anything. Everyone has their bad days, whether you see them or not. Just remember that it is okay to struggle, it's okay if not everything makes sense, and we are so happy to have you here.

Explaining Chronic Pain

This article is sponsored by Gali Health.

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One of the most troubling and tricky feelings of the human condition is pain. It’s the body’s warning signal that something is wrong. It always seems to show up unexpectedly. It’s the world’s worst party guest. Seriously, it could at least bring a party gift, or an extra bag of chips and salsa to share. Instead, it interrupts the flow of midnight ragers and days of routine alike. Pain is the ultimate consumer. It takes, absorbs, and swells, without giving any of itself up. To make it even more complicated, pain comes in more hues, flavors, and shapes than can be counted. Pain is a universal experience, but the experience of pain is unique to each individual. 

There is round, smooth, aching pain that rolls around the body all day. There’s sharp, jagged pain that cuts, stabs, and leaves a metallic taste on the tongue. There’s pain that shapeshifts. It howls like a werewolf, then sizzles like the sting from an insect. I could go on, but the list of the types of pain is again endless. That said, living with a chronic illness like IBD means tasting an entire buffet’s worth of pain types. Despite the fact that pain is so specific, and individual, people often try to measure and compare pain. As a chronically ill individual, it can be frustrating to have your pain compared, and rationalized by others. For instance, people will often compare the abdominal pain from ulcerative colitis, or Crohn’s disease to a stomach ache. In reality, chronic pain is much different from everyday pain. 

When the pain from chronic illnesses is compared to pain from other illnesses, a large part of the context is ignored. Patients with chronic illnesses and pain have to confront pain oftentimes on a daily basis, and manage pain oftentimes without a totally effective treatment. The pain from a stomach ache, or a stubbed toe will eventually fade, and if it doesn’t, there is generally an effective treatment available. With a chronic illness, no such treatment necessarily exists. There is no timeline for recovery from the pain. Instead, it can be endless and unclear with multiple trials of various treatments required in order to find relief. In essence, chronic pain has no end deadline.

Despite this, the chronically ill often live normal lives everyday. Patients and pain sufferers go to college, go to work, and even to social events despite their pain. It’s especially important to remember this, because for all of its flavors, pain can be quite invisible. Dealing with pain is a challenge, and a burden, but millions of people around the world surmount the obstacle of pain everyday. Accommodations for patients make living with this weight easier, and enable us to be more active members in our communities. Still more work needs to be done to improve the quality of life for those dealing with pain. The compassionate way to treat the chronically ill, is the most inclusive way and the way that eliminates the disadvantages of the disabled. In the future, I hope all pain is treated with the utmost consideration and care for the individual. After all, if that was the case, there would be a lot less physical, and mental pain in this world.

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This article is sponsored by Gali Health

Gali Health is an AI-based personal health assistant app helping people with inflammatory bowel diseases (IBD) proactively manage their condition. Gali gathers knowledge from daily interactions and health monitors to tailor support and information to your specific IBD experience.

My IBD Life - Ode to Despair

I sat down to write this article with the intent of describing some personal experiences with my family and friends during a period of progressing sickness that eventually led to surgery. It’s very hard for me to segregate various aspects of that time. I was struggling on many fronts. Everything seems so intertwined. I probably would have managed better, if the only thing I had to worry about had been my health. Sometimes, I wonder if I could live through that again. The worst parts of that period were the nights. Serially failing medications had brought me to a point where I was living with severe chronic pain and total incontinence. Every night I would go through a sequence of muffled crying, screaming, and dancing, to wither and end up on the floor like a lifeless body. I did that deliberately to tire myself out and fall asleep. Every night it was the same routine. Some nights, the urge to end it all was too strong to resist. I dreaded the nights and took up a night job to cope. I thought if I forced my mind to concentrate on a job, it would help with the pain. I’d suffocate at work, and even had “accidents” at work, despite wearing diapers. Everyone around me in my home or outside was oblivious to what I did to myself in my room in the dark. My coping mechanisms bordered on the psychotic.  I would strangulate my body parts to make them numb. I would try to substitute the pain with another kind of pain by using an excessively hot pad. The pain was too much. The blood was too much. The nights were too long. The thing that hurt more than the pain was that every medication would make a mockery of my attempts to live. Early promising results followed by a rapid decline leading to increased symptoms were a pattern. At my core, I’m not a very hopeful person. My life circumstances have molded me into a deeply introverted and pessimist personality. My mind constantly tries to simulate everything that can go wrong and I try my best to put control measures in place. With this disease though, I was helpless. I read vehemently, but I was not a doctor. I forced myself to cultivate hope with every new medication. However, I always ended up dejected. Sometimes, I felt like a bloody soldier struggling to stand straight, kneeling on the ground against his sword, and waiting for all of it to get over.

As I started reminiscing those nights, my intents changed. I wanted to describe that cycle of hope and consequent despair to someone. It resulted in me writing a poem which I’m sharing here. 

They tell me the war is over and we won.

They tell me that the night is at last, gone.

They tell me the sun’s rising on the horizon.

They tell me, they tell me it’s a new dawn.

They tell me the same things again and again.

And each time they say it, I believe them. 

I hide from my fears, behind a translucent curtain.

Weak ropes of hope bear the weight of my pain.

Soon it all comes crashing down to the ground.

And I see them again. The blood-hungry hounds.

Dread sets into me as they approach and surround.

Every inch of me bleeds. My screams resound.

And when it’s all over, I look down from the edge.

Frail, pale, broken, and defeated, after the rampage.

No antidote to my ailment, my soul feels caged.

Desperate, I am prepared to embrace the only escape.

“Stop! Don’t!” I hear a voice break the silence.

I recognize the voice. It’s them. Once again.

They praise my resilience. Talk about Providence.

Promise me there’s a reason for my existence.

They look to infuse me with hope and faith.

They tell me tales of the fierce and brave.

Why then I don’t believe what they say?

Oh! It’s because, soon after ...

They tell me the war is over and we won.

They tell me that the night is at last, gone.

They tell me the sun’s rising on the horizon.

They tell me, they tell me it’s a new dawn.

There was a time when I tried to capture my pain in words. I was better at writing then. With time, the writing started to feel like a futile exercise. The nights never went away.  Instead, I now try to repress those experiences in some corner of my brain as I have done with other traumatic incidents that I have lived through.

My doctor once told me that there were only 2 patients other than me under his care, with a severity of disease that was similar to mine. I felt sad, but then I realized it’s a good thing that more people do not go through such experiences. However, I’m sure there are enough like me in my country which has a population of 1.3 billion, but I’m not sure if everyone is as lucky as me. The mental health of patients with Inflammatory Bowel Disease has never been a priority in the Indian Healthcare system. It’s time that we begin to provide holistic support to young adults with inflammatory bowel diseases to enable them to manage this disease better and come out of the experience with as little residual trauma as possible. 

Please stay safe and take care. See you next month. :)

IBD and Anxiety

When you are first diagnosed with Inflammatory Bowel Disease you learn quickly that the brain and gut function as one. They are deeply connected. Even if you don’t have IBD, you can look to feelings like butterflies in your stomach when you are nervous, excited, or in love. IBD has given me the superpower of identifying an instinctual trust of my gut. One thing you commonly hear when talking about how to manage your IBD is that you have to manage your stress levels. Since the brain and gut are so connected, the chances that a flare up will occur when you’re stressed are high. Truthfully, being able to manage your stress is a very privileged thing to be able to do and that’s a conversation that needs to be had. Outside forces and systems of oppression exist heavily in our world today. We are not functioning in a world that allows you to thrive and prioritize both your mental and physical health. For most people, there is always a tremendous amount of stressors that you cannot escape. Things like finances, unstable households, going to school, and working all cause a great deal of stress. 

Today, I want to specifically talk about how managing stress levels and IBD feels increasingly impossible when you have clinical anxiety and/or PTSD, as these are so often linked with IBD. 

I was diagnosed with IBD at a young age. My physical health was always prioritized over my mental health. This was more pronounced, I think, because mental health is not a thing that is necessarily often invested in for young children. As a child, it was very difficult for me to identify what I was feeling and what triggered these feelings. Specifically, with my anxiety, I did not know what a neutral state of mind meant. I didn’t know what my anxiety looked or felt like till around my sophomore year of college. After going on anxiety medication for a bit, I was able to understand what intrusive thoughts were and how they occupied my life. 

The baseline for my anxiety is intrusive thoughts, but it can also manifest itself in different ways just based on the things I am doing in my life at the time. For example, my anxiety can manifest itself in ways such as crying in social settings, having an obsession with time (i.e. constantly looking at the clock or leaving hours early for events), and, when things are more extreme, staying in my room for days on end. For me, it is so important to specifically state how my anxiety manifests because for so long I did not know what it meant. I think it is important that we normalize talking about everything that anxiety can bring with it, not just generalizing or downplaying it. So often, I think anxiety is talked about in very loose terms and given very simple fixes for how to “handle it.” This, in return, can oftentimes belittle the situation. 

When these more intense and intrusive moments occur, my IBD flares up. So, I often question how I am to manage my stress when I often cannot control my anxieties. In the past, I would become stressed when I experienced my anxieties because I did not know what was wrong. Now, they still stress me out, even though I know that it is anxiety. 

For me, and I think many others, anxiety is something that I have to constantly cope with on the daily. If I am not ten steps ahead of it, it will simply swallow me whole. 

IBD and anxiety can feel overwhelming and scary, but what has helped me is knowing that I am not alone. Having these two conditions together is not uncommon, and what feels very isolating and full of despair is not the case. Medication has helped me in the past and therapy is a forever process for me. I also keep a bullet journal of coping skills I have used in the past - identifying coping mechanisms that worked and ones that did not. This list gives me a place to turn to when I feel as though nothing could help and it's easily accessible. I have also found solace in being in a community of people who understand. Explaining anxiety or IBD to someone who has not gone through it can be very exhausting and this goes for many other varying identities as well! When I do find the energy, making art is another space for me to process my anxiety, whether that be through a conceptual piece or just painting a canvas with one color over and over again.

What are ways you cope with your anxiety?

Judging Symptoms with Crohn’s

Sometimes, it feels like all gastro symptoms are inflammaotry bowel disease (IBD)-related… especially being symptomatic with IBD for so long. However, it’s not always case – which can cause a great of confusion, as well as making life just that bit more complicated!

As well as Crohn’s disease, I also have gastroesophageal reflux disease (GERD), irritable bowel syndrome with constipation (IBS-C), an internal rectal prolapse and lactose intolerance. I was diagnosed with Crohn’s disease in 2008, after several years of experience gastro-related symptoms. So, at that point, I assumed that everything I had experienced was the result of Crohn’s. What I failed to realise, and what wasn’t explained very well at the time, was that I also had GERD. I was suddenly prescribed all of this medication, without being properly informed of the purpose of each different medication.

Over time, and with the right treatment, I became more informed, and I was able to get my Crohn’s disease under control, to the point where I was deemed to be in clinical remission. This was concluded by considering blood tests for inflammation (CRP and ESR), colonoscopy and gastroscopy results, small bowel MRI scan results and faecal calprotectin results, each of them done at different frequencies over different periods of time. This happened gradually over a few years, and in the process, I learned more and more about my body. However, I began to struggle with more gastro-related symptoms, which I initially thought were a Crohn’s flare, but soon realised were not exactly the same as before my Crohn’s diagnosis. I felt bloated and constipated, I had abdominal pain, and I was passing mucus. It became clear that I most likely had IBS-C. The problem I found with IBS was that there was no quick and easy fix for it – not that there has been a quick and easy fix for Crohn’s disease, but at least I was able to take some treatment which helped control the inflammation. With IBS, I felt very much in the dark. Recommendations were an anti-spasmodic to relieve cramping, laxatives to ease constipation, and avoiding foods which seemed to make me ‘worse’. I watched what I ate very closely, and soon identified certain green vegetables as a trigger, as well as milk products, which I tried to reduce. 

Little did I know, but the milk products weren’t just a trigger for worsening my IBS symptoms, but I was also lactose intolerant. I was diagnosed in 2015 – some seven years after my Crohn’s diagnosis. This only happened after one doctor felt there was something else going on and decided to test for lactose intolerance and Helicobacter Pylori infection – and thank goodness they did! I’ve managed to cut most forms of lactose completely out of my diet since, and when I can’t, I have found a lactase enzyme supplement I can take immediately before eating or drinking something containing lactose, to help me avoid those unpleasant symptoms.

I thought that was going to be it when it came to gastro problems. Then, something else came along! Originally blamed on my IBS-C, I noticed I was struggling more with constipation, despite eating a balanced and healthy diet, and doing everything else ‘right’. A couple of healthcare professionals didn’t really acknowledge my perspective, and just said I need to take laxatives permanently – something which I do take, but often feels like a ‘quick fix’ or ‘cover the wound with a plaster’, without understanding the underlying reason for these changes. Many blame IBD, plus IBS for constipation, without necessarily looking further. It sometimes feels as though assumptions are an easier option in the medical world, but not for those of us living with these symptoms. Moreover, I had observed changes beyond those I had learned to notice by living with IBD and IBS-C. 

Cutting a very long story short, I ended up going for a proctogram which revealed I had an internal rectal prolapse – which is basically when your rectum folds in on itself. It wasn’t the most dignifying procedure – much like most gastro-linked investigations. Dignity often goes straight out of the window! However, this finding did explain the sharp shooting pains I had been having in my rectum, as well as the mucus I had been passing, the ‘fresh’ blood I had noticed, and why it sometimes felt as though there was a physical obstruction – because there was. The verdict was ‘there’s not much we can do’ – something I think we’re all too used to hearing. There are surgical options, but they come with risks and they more or less said they would not be considering that option for somebody of my age. So, I was sent away with pelvic floor exercises, and the notion that ‘I just have to live with it’ – which I do. At least I received an answer for the symptoms I had been experiencing, even if I don’t have an answer as to ‘why’ I have a rectal prolapse. My current hypothesis is that it is something to do with hypermobility, which has consistently been overlooked – but that’s a whole different story!

All of these different symptoms, and the conditions subsequently diagnosed, have taught me so much. I have learned to really listen to what my body is telling me – which is not easy but does improve with time. I’m not always right, but my judgement certainly seems to be stronger now, after all of these years with IBD, IBS-C, GERD, a prolapse and lactose intolerance. I am much better at distinguishing as to ‘what’ is causing ‘what’ – although it’s impossible to always be ‘right’! You just tune into what you are feeling, almost like detective work. You place pieces of the puzzle together to help you build the picture of what you think is happening. Your previous experiences and your observations guide you, alongside being proactive in terms of knowing clinical indicators, recognising new triggers, stressors or symptoms, and then being proactive in seeking the right input from the right healthcare professionals. It comes more naturally after years of having to take things into your own hands to get answers. For example, I now know that the abdominal pain and cramping that I frequently experience is when I am perhaps a little constipated as a result of IBS-C and my internal rectal prolapse; so I adjust certain parts of my diet and take additional laxatives when I begin to notice patterns changing, early on. Likewise, the ‘whale’ noises and ‘washing machine sensation’ immediately indicate that I’ve consumed something containing lactose without realising – like the time I ate a gorgeous cheesy pizza, and then realised I hadn’t taken my lactase enzyme… I suffered for the next few hours! 

These conditions, in one sense, sensitise us to be more receptive to how our bodies work. I don’t think I would have been as knowledgeable or as ‘switched on’ as I am if I hadn’t been diagnosed with them – and I wish more people recognised this, particularly certain healthcare professionals. I often have grievances with professionals who rely solely on certain clinical indicators for disease remission. For example, those who just use CRP as an indicator as to whether you are in remission or not. This has happened to me in the past when I was evidently in the middle of an IBD flare, but at that point in time, I was not confident at self-managing my health. As it turned out, my faecal calprotectin was off the scale, and so some additional treatment helped me out immensely. What did I learn? Nobody knows my body better than myself. Healthcare professionals can help me the most when they listen to what I am saying, acknowledge my expertise, and then work with me to identify what is really happening, and then plan with me as to what to do to help manage symptoms so that I can get on with my life, and most importantly, have a good quality of life. So, when anybody questions what you are thinking or feeling, remind them of this point, and hopefully, they will change their approach so that it is supportive, rather than a hindrance.

Emotions and IBD

There are a lot of emotions that come with the diagnosis of any chronic illness, or even any major life change. But laying on the operating table, under the haze and fading twilight of the anesthesia medication exiting my veins, I felt nothing. The echoing silence of the room was heavy all around me. I expected to feel an overflowing stream of emotions flow over me, but instead the most striking sensation of my diagnosis was emptiness. It could have been the drugs dulling my system and my perception of the world. Yet, over time, I’ve started to think that the cause of the void-like feeling around my diagnosis was something incredibly real, and not artificial. The feeling of change is oftentimes so big that it feels like nothing. 

In that hospital room, so much had changed with a simple test. The scale of the moment was beyond comprehension. My parents and I communicated without words, because anything that could have been said would have failed. All the periods, letters, and adjectives in the world would never be enough to frame that point in time. So, somehow and instead, I just knew that I had ulcerative colitis without being told. Shock, and the whole experience, was such a surreal feeling. To know that something has snapped, or broken, or ended, but to be unable to directly confront that realization is off-putting. It was easier to not speak the change aloud, because to speak it into the world would make it extra real. 

In the weeks after my diagnosis, it was as if a light switch had been switched back on. All of the fear, grief, and anger I had missed earlier suddenly now surrounded me. The trauma of illness is such a widespread and varied experience, but it can be difficult to describe and discuss. It’s isolating to feel different, and to feel like you’ve lost a piece of yourself. Health is something that most people take for granted or don’t think about. So when it’s taken away from you, its absence becomes the dominant part of your everyday life. The shift in my lifestyle to one focused on health had a significant impact on my mental health. I was in an environment, my freshman year of college, where everyone seems to be testing the limits of their independence. Thus, to feel completely dependent on my unstable day-to-day health felt unfair and tragic. 

It’s a challenge to have the energy to battle painful, and draining symptoms on a daily basis. I learned that adjusting to my illness, and all of the treatment that comes with it, was a major part of my healing journey. On top of that, I realized that acknowledging the emotions I was experiencing was an important part of accepting my illness. It’s normal and natural to be angry, to grieve, and even to be nostalgic for your life prior to diagnosis. In fact, for me, it was the first step towards opening up and connecting with others in the chronic illness community. My experiences, feelings, and my relationship towards my health has been full of highs and lows. Most of all, I’ve learned that the negative and positive emotions I’ve encountered from dealing with illness are all valid. They’ve helped me grow, learn, and evolve as an individual. Every journey is different, and that is perfectly okay.

Grieving with Crohn’s

By Simon Stones

I have experienced some loss over the years, none more difficult and painful than in 2019, when I lost my mum to pancreatic cancer. The pain was indescribable, like nothing I’ve ever experienced. In the weeks and months that followed, I had to adjust to the fact that overnight, my life had immeasurably changed. I now had to adapt to a totally new way of life – one which felt uncomfortable, unfair, and at times pointless. 

During these times, I was reminded of the grief people experience after receiving a life-changing diagnosis, like inflammatory bowel disease (IBD). Naturally, this type of grief is somewhat different to the grief experienced when a loved one dies, but it is still a form of grief. You are grieving the loss of your pre-diagnosis life... and it’s an important, and necessary process which you must go through. 

Grief strikes each person differently. After all, we all have our own, unique ways of dealing with challenges and heartache in life. A friend recently sent me a surprisingly accurate analogy of grief, which hit the nail on the head. It shows that for most people, grief of a loss, whatever that loss may be, never leaves a person completely. The loss never goes away, but it may change over time. 

Imagine your life as a box. Inside the box, there is a ball, which is the grief you feel, as well as button which when pressed, causes pain. During the early days after your loss, everything is new. Everything is raw. The ball of grief is overwhelming, and so large, that every time you move the box... that is, every time you try to move through your life, the ball of grief cannot help but hit the pain button – constantly. This represents that initial experience of loss – when you can’t control or stop the pain that you are feeling. It is just relentless, no matter how much others try to support and comfort you. At this point in time, it feels as though the pain is unrelenting, and will be like this for the rest of your days. 

However, over time, the ball starts to shrink on its own. As you go through your life, and as the box moves, the ball still rattles around inside the box. However, because the ball is now smaller, it hits the pain button less often. In one sense, you may feel that you can go through most days without having the pain button hit. However, when the ball does hit the pain button, it can be completely unexpected – and hurts just as much as it did during the early days of your loss. This could happen when you’re in a particular place, such as at the hospital, or when listening to a piece of music that reminds you of your life before your diagnosis. It could be anything that is personally meaningful to you. 

As time passes, the continues to shrink and with it, so does the grief for the loss we have experienced. However, we never forget the loss that we have experienced. We must acknowledge that there will be days when the ball does hit that pain button, and when it does, we must be kind to ourselves. 

“We must accept sadness as an appropriate, natural stage of loss.” 

Upon reflection, it’s quite easy to see how this analogy somewhat resembles the process we go through after loss. I’ve certainly seen it after the loss of my mum, but also thinking back to when I was diagnosed with Crohn’s disease. I’ve also observed this with other people I’ve met along the way living with a variety of chronic health conditions. However, the process isn’t straight-forward – nor something we can plan for. It’s personal for each and every one of us. 

In 1969, Swiss-American psychiatrist Elisabeth Kübler-Ross introduced the five stages of grief model. The model describes how people experiencing grief go through a series of five different emotions: denial, anger, bargaining, depression and acceptance. While the model has received criticisms, Kübler-Ross said that she regarded these stages as reflections of how people cope with illness and dying, rather than reflections of how people experience grief. What is certain is that these stages are not linear and predictable. 

Let’s start with denial. Can you remember the thoughts that went through your head when you received your diagnosis? Denial is an entirely normal reaction to rationalise those overwhelming emotions that we experience. You can almost regard denial as your human defence mechanism to when you receive that shocking news, and when you begin to think about what you have lost. 

Then there’s anger, which often consumes our souls once the denial starts to diminish. As the pain of the realisation sets in, and as your senses begin to heighten to your surroundings, those feelings of intense frustration and grievance set in, as we start to search for blame. For some, the anger may build up internally, whereas for others, their response mechanism may to be to lash out at everyone and everything around them. 

Along comes bargaining at some point. You know, the stage where you think, ‘What if...’ This serves a really important purpose – and often a temporary escape from the pain you’ve been experiencing. For there may just me small, tiny glimmers of hope, amidst the chaos and despair. 

There’s also depression. In the past, I’ve sometimes felt scared of the term – or rather, the label that can exist in society. But what’s unnatural about depression in these circumstances? It is an entirely rationale and appropriate response as you deal with a great loss. From the intense sadness, to the overwhelming lack of motivation, poor sleep and altered appetite – it’s all part and parcel of dealing with something as colossal as life-changing diagnosis. Again, the experience of depression will vary between every individual, and indeed within yourself, depending on ‘where’ you are at any given moment in time. 

Finally, there’s acceptance, although it’s certainly not ‘final’. Here, you succumb to the reality of your loss, and understand that no matter what you do, nothing can change that reality. This doesn’t mean that you are ‘okay’ or ‘happy’ with the loss that you have experienced; however, it does mean that you are getting your head around it, and are learning to live your life, albeit different, in the best way possible. 

I have no doubt that so many people living with IBD can relate to these different stages and emotions – which can often feel like one big mess, sometimes happening concurrently, and most certainly in a disordered, confusing way. There will always be days when you think, ‘I’ve had enough of this’ – I know I still have those, but they are less frequent as time goes by, and as I learn to adjust to present life. It’s a bit like being out at sea. Sometimes, the sea feels calm, and you can see the beauty in the world. At other times, the waves overwhelm us. When you feel like this, just remember to swim and look for dry land. It’s all we can really do. 

Frustration

By Samantha Rzany

Sam is an independent artist, check out her Redbubble website for IBD stickers or you can message her on Instagram at Samantha.rzany

It’s easy to sit and write about the positive things I’ve learned from life with a chronic illness. I can talk all day long about my journey and what it’s been like for me. I have no problem sharing details about my symptoms and side effects and the physical symptoms of my disease. But what is hard is to be honest. I find it difficult to admit just how hard it is to live with ulcerative colitis. 

Anytime I share with someone that I have a chronic illness, they often apologize. I tend to quickly brush it off and say that it’s okay and then proceed to share the numerous opportunities I have gained from my illness. But it’s not okay. And I’m not okay. Living with IBD is hard. Every single day. It is frustrating. It is exhausting. And it’s just not fair. 

As a 22 year old, I want to be able to go to my 4-day-a-week-job and return back home each day without feeling so absolutely fatigued that all I can do is lay down in bed until I have to leave the next morning. I want to be able to enjoy my three day weekends and spend time with friends and have fun. And I’ve certainly tried to do that. And it starts my week off horribly. I start my work week with my energy below 0. 

I find the spoon theory to help me explain this really well. Each person starts out with a certain number of spoons. For a chronically ill person, the number of spoons is significantly less than the average person. Every single activity (going to work, hanging out with friends, running errands, etc.) takes some of those spoons away from you. And it is very hard to refill your spoons. So when I spend my weekend hanging out with friends and having fun, I start my work week out with no spoons. I very quickly go into the negative. Until my only option the following weekend is to sleep all day everyday. 

It’s an incredibly frustrating cycle. The absolute fatigue from doing very normal things is debilitating. And people just don’t understand. They see me as lazy or a typical “millennial” who just wants to get money and do no work. But it’s not the case. I want to work. I want to go back to grad school. I have so many ambitions for my life. But I am limited. 

It’s frustrating that the medication that is putting my IBD in remission causes so many issues. I find myself seeing specialist after specialist to fix issues that all stem from one medication and one condition. I have to see a neurologist for the migraines I get. I have to see a dermatologist for inflammation in my scalp and rashes on my hands. I have to see an optometrist for inflammation in my eyes. The list goes on and on. I often joke that I’m a 22 year old in a 60 year old’s body. But the sad thing is that it’s truly how I feel. And it scares me. If this is how I’m feeing at 22, what will I feel like when I’m older? When I am 60? 

I don’t like sharing what it’s really like living with IBD. I don’t want people to pity me. I don’t want to burden people with how hard it is. I don’t want my close friends and family to be scared or upset for me. So I often put on a brave face and share my story and hope to empower others to do the same. But life with a chronic illness, especially at 22 years old, is hard. It’s frustrating. It’s exhausting. It’s overwhelming. And many times, it is incredibly lonely. 

I’ve only had IBD for about a year and a half. So I’m pretty new to all of this still. I know there will be times when it gets harder and times where it gets easier. And I’m sure I’m not the only one feeing like this. The frustration, the exhaustion… it doesn’t just go away. But I have found that talking about it helps. Talking to my family and my close friends. Sharing with those in the IBD community what I’m feeling. Even though it doesn’t take away my disease, it makes me feel less alone. 

Hair Loss

By Rachel Straining

Hair loss was something I never expected at the age of 22 until I found myself staring in the mirror, crying at my reflection. 

I knew the stomach pain. I knew the sharp, stabbing aches. I knew the nausea. I knew the fatigue. I eventually even knew the PTSD. But I didn’t know about the hair loss. 

Telogen Effluvium, they called it. It took me a while to figure out how to spell it let alone understand it. Telogen Effluvium - the medical term for temporary hair loss that occurs after your body undergoes serious stress, shock, or trauma. The words stress, shock, and trauma barely begin to cover what my body went through almost a year and a half ago. 

When two of the worst flares I’ve ever experienced happened back to back, one after the other, I lost weight rapidly. I couldn’t eat. I couldn’t sleep. I could barely breathe. I could barely even make it up the stairs without holding on to the railing for dear life and support. 

Shortly after, that’s when my hair started to fall out like I’ve never seen it fall out before. In clumps. In the shower. In my hands as I held seemingly endless strands of hair that I never thought I’d lose. 

I have always struggled with feeling beautiful in my own skin and my own being. Truthfully, growing up, I had always placed an immense amount of importance on my appearance, and my long locks had always felt like a kind of comfort blanket. “Hey, at least I have good hair,” I would say as I picked every other inch of myself apart. Watching my brittle hair fall in my boney hands as I stood in the shower with hot water and tears streaming down my face felt like the final blow to my already withering self-worth. 

I wouldn’t put my hair up. I couldn’t. Not in a bun, not in a ponytail. No matter how hot outside it was or how humid it got. If I tried to, I would immediately break down at the sight of empty, bald patches of hair that were once so full. 

Hair loss is not something that many people, especially many young adults, talk about, but it’s something I’ve come to realize that many have experienced. It is an external, physical side effect that also comes with its own host of internal, mental battles. 

You can say it’s “superficial” and you can say hair “doesn’t matter,” but when your illness continues to distort your self-image and self-confidence time and time again in ways you never thought imaginable, it is hard. It is really hard. It is traumatizing. It is difficult to fully understand unless you’ve been through it. No feelings we endure are trivial, no battles are to be invalidated. 

As someone who has gone through it herself, I am here to tell you you are allowed to feel it all, and anyone who says otherwise can come talk to me. You are allowed to be angry and sad and upset. You are allowed to cry, you are allowed to mourn what you once had, but I also want you to know that I refuse to let you give up on yourself. 

In the moments when you’re standing in front of the mirror or standing in the shower, I know how much of a battle it can be to feel good about yourself, to feel like yourself, to feel like you are complete with bare patches revealing your skin. 

However -

In a society in which it has been so wrongly ingrained and instilled that part of one’s worth is to be found in one’s physical appearance, I want you to know that your worth is not found in the hair on your head or even the freckles on your face. Your worth is found in the way you make other people smile and in the light that you bring to this world simply just by being in it.  

And yes, yes your hair will grow back as you heal. And you will heal. And healing will be a roller coaster of emotions with both mental and physical twists and turns, but the bravest thing you can do along the ride is to embrace who you are inside at every step of the way. 

The bravest thing you can ever do is choose to accept yourself every time you feel as though you can’t. 

Crohn’s in College: Perspectives from a Former D1 Student Athlete

By Rachael Whittemore

Erin and I met in a serendipitous way - I was flaring and having a rough day at work, so I had to switch places with someone at work so I could sit instead of running around in surgical dermatology. She had come in for a triage appointment. We were talking and I made a joke about my stomach and she replied - “oh, I totally understand that, I have Crohn’s.” It couldn’t have been more perfect. We laughed about our IBD and bonded over our love for UNC. I also found out she would be starting a job at the clinic soon! She became a part of our “PA pod” and a beautiful friendship began. Erin is someone who gives her all in everything and is a light to anyone she meets. Like everyone with IBD, her story is unique and she has found a way to truly thrive in spite of it. She graciously offered to answer some questions about life and her journey with Crohn’s disease.

We both share a love for missions and travel!

Tell us a little bit about yourself. What are you up to right now and what plans do you have planned for the next year? 

Raised on a farm in rural North Carolina, I graduated from my dream university (UNC-Chapel Hill) back in 2017 and have stayed in this lovely city ever since. After graduating, I traveled some and then landed this sweet medical assistant job where I became Rachael’s trainee. I am still gaining experience hours in the clinic, with plans to apply to Physician Assistant programs next summer. Along with working full-time, I have been pursuing a second degree in Public Health from North Carolina Central University. My hope is to join public health education and community outreach into the way I practice as a Physician Assistant one day. 

Working as MAs together at Central Dermatology.

What was it like being in college and starting to experience IBD symptoms during a time that is often deemed “some of the best memories you will make?” How was this affected by you playing a sport? 

Overall, my first year of college was pretty miserable. As a first year student athlete, having my first true flare within the first month of training was about the worst timing it could’ve been. I had experienced some fatigue and abdominal pain throughout my senior year of high school but, with the stress of starting college courses and the physical toll softball was taking on my body, the pain and exhaustion was consuming. I had no idea what was going on with my body and why it seemed to be betraying me. I couldn’t perform athletically the way I had before and no one believed me when I tried to explain how I was feeling. In their defense, I didn’t know how to advocate for myself since I didn’t understand what was happening. Nevertheless, I still felt isolated from my teammates, coaches and friends. It looked like I was some freshman who came in lazy, poorly prepared physically, and mentally weak. In reality though, I was struggling to get out of bed in the mornings for weights. I slept on any bench I could find in between class (even if it was for only 5 minutes). My body constantly ached and I’d be back in the weightroom or on the field before I ever felt any recovery from the last training. I’d clutch my stomach at night from the pain. The majority of the time, I felt awful physically and, in turn, felt awful about feeling so weak and letting my team down. It was a difficult time for me. 

How long did it take for you to get an official diagnosis? Was it difficult? Did you have any issues with providers not taking you seriously?

From my first symptoms back in high school to the beginning of sophomore year at UNC, it took over two years and five different doctors to diagnose my Crohn’s disease. This journey was definitely one riddled with frustration and hopelessness at first. I knew my body felt off but after having three different doctors tell me things like, “It’s just a stomach ache, suck it up,” and “Well, if your primary care provider doesn’t think it’s anything, I don’t either,” I decided that I must be crazy and I just had to deal with the pain. When the flare hit me hard at UNC, I went to another doctor to reevaluate for a fourth opinion. After a lot of advocating, he finally tested some labs through blood work. The results showed that I had severe iron-deficiency anemia but the cause wasn’t looked into any further. I remember offering up that maybe it was related to the significant, recurring abdominal pain I’d been experiencing but that was quickly brushed off. My diet was adjusted to help increase my iron intake, but I felt worse as the diet consisted of all the foods that (I now know) cause my flares. It wasn’t until after I had to medically retire from the softball team at the end of my freshman year that I went to see my fifth and final provider. She sat with me, listened to me, and fought with me to find an answer. Within about a month or so, I finally had my diagnosis. The diagnosis proved to others that my struggle was real, but more importantly, it finally gave me a chance at finding some peace. 

What advice would you give other young adults with IBD who may have been seriously playing sports prior to their diagnosis?

I would love to encourage my fellow IBD athletes that this diagnosis doesn’t have to mean an end to your athletic career. I was blessed in that, by my senior year, my Crohn’s was in remission. I laced up my cleats and wore that Carolina jersey proudly for a final season. Was my experience the same as my teammates? No, my conditioning had modifications and some days I had to listen to my body and rest. But who cares? There’s no shame in that. In fact, it’s even more incredible that we’ve been provided the opportunity to compete and perform at that level despite our adversities. I found immeasurably more joy in my sport that final season and realized how much I had taken it for granted before. No matter how much we pour ourselves into our sports, we are not entitled to perfect batting average, fielding percentage, or even health. Sometimes, we get to be creative and find ways to integrate back into our sport or even just an active lifestyle. If you are able to continue athletics, I highly recommend having an honest conversation with your coaches and teammates about expectations and trust. Don’t be afraid to advocate for yourself and your health. If you aren’t able to continue your athletic career, I grieve with you and that loss. I understand the identity crisis that ensues as soon as you are no longer an athlete, however, so much growth comes out of this season of life. I encourage you to shift your hope into something greater than a sport. 

What advice do you have for young adults who are trying to find their way after their diagnosis? 

First, I’d recommend taking some time to wrestle with the reality of the diagnosis and what this means for you personally. Lean hard into your community because having a support system is so crucial. It can be overwhelming in the beginning but trust me that things even out over time and you’ll start to adjust to your new normal. Once you get your bearings and start looking forward, don’t allow your IBD to define or limit you. There is so much more to you than your diagnosis. In a really twisted way, Crohn’s was potentially the best thing that could’ve happened to me. It caused me to really evaluate my life and my heart. It opened up my eyes to new passions and the desire to pursue them. 

After medically retiring from softball for my sophomore and junior year, I was able to study abroad in Scotland for a semester and backpack around Europe for eight weeks after. I became more involved with a campus sports ministry called Athletes In Action, making lifelong friends and growing deeper into my relationship with God. I began to merge my loves of traveling and Jesus together on mission trips abroad. I’ve even recently been on a medical mission trip back in February, which was especially memorable for me. My heart has never been so full. All of this is to say, there is so much life left to explore and experience in this world. It would be a shame to let IBD take that away from you.

On a recent mission trip in Belize - working as a dental assistant!

What advantages do you think living with Crohn’s disease gives you in the real world? Has any reflection changed your perspective on living with a chronic illness going forward?

My Crohn’s disease has given me a certain confidence and purpose for my career path. Before all of this, I wasn’t sure what I wanted to pursue professionally and now I am passionate about becoming a medical provider one day. Even as a medical assistant now, I have been able to relate to my patients on a deeper level when reviewing biologic injections and other medications. Being able to sit with a patient and provide information and counseling from personal experience really helps build trust. While my experience with the healthcare system wasn’t a positive one to start, I’ve since had providers that have made me feel heard and valued. I want to be able to care for others in such a personal and profound way like my medical team has for me. Even if you don’t want to go into the medical field, there are lessons from our experiences on how to treat others that apply to all aspects of life.

I am also grateful for the advantages of endurance and perseverance that I’ve gained. With IBD being a chronic disease and after seven years since my diagnosis, there have been a lot of opportunities to wallow in self-pity. Don’t get me wrong - sometimes there are still days where I’m frustrated with having Crohn’s - but overall there have been so many victories over it. Each time I’ve adjusted my treatment regimen, found yummy recipes in my diet or shared my testimony, I've experienced joy. Celebrate the little things and appreciate the magnitude of what we’ve overcome. Living a full and purposeful life with IBD is possible and I want to empower you to continue persevering to find that. Throughout this experience, I’ve been shaped into the woman I am today and it has provided me the capability to handle all that will come in the future.

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