Calling in Sick and IBD

Hustle culture - committing your life to your job and career - has become normalized and even expected in young adults. After graduating university, many find their self worth linked to their career, earning promotions, competing with coworkers, and impressing your boss. As a twenty something year old with Inflammatory Bowel Disease, the struggle to balance work with your health is never ending. 

Those with a chronic illness understand not to take life for granted and that each day can be as unpredictable as the next, but we often forget this and get caught up in prioritizing a career over our own health and wellbeing. Calling in sick to work is inevitable, everyone has to do it at some point in their lives, whether it’s for a mental health day, the flu, or a flare-up. Yet, there are so many negative stigmas around missing work and around prioritizing your body. 

The feelings of guilt that come with calling in sick to nurture your body, whether you see your body deteriorating, know a flare is coming, or if a flare comes out of the blue, can be overwhelming. The stigma associated with hustle culture and calling in sick can feel disheartening. I have always had a hard time taking a sick day, and I always felt like I was letting my boss and coworkers down and that I wasn’t worthy of employment. Intense feelings of frustration and annoyance invaded my mind when debating whether to call in sick and these intrusive thoughts caused my body more stressors on top of being physically ill. I often remind myself that prioritizing my body is my number one job. Without my health, I wouldn’t have a job and I wouldn’t be able to participate in all the amazing experiences life has to offer. 

A helpful comparison to calling in sick is the safety instructions reviewed when boarding a flight, right before take off. The flight attendant always reviews the emergency instructions, stating that if the plane were to lose oxygen, you are always to put on your own oxygen mask before helping someone else. Putting yourself first will enable you to not only succeed at your job, but also to succeed in other aspects of life. If you were to ignore your body’s signals that you need rest, you will become more sick and risk the most important thing, your health. 

You are not weak, undeserving, or less important than your colleagues and friends because you need to call in sick more often than the average person. You are strong, resilient, and brave. We battle a viciously unpredictable disease that many do not understand. Do not let your worth be measured by whether you call in sick. I challenge you to listen to your body and honour what your body is saying, you never know how far you will fly until you respect and love yourself and with that includes respecting your body’s limits. 

Recently, I took two sick days at work due to a small flare up and my boss and coworkers were overly supportive. Although feelings of guilt surfaced when I was making this decision, the second I returned to work, everyone showed how much they cared about my wellbeing.

If you are experiencing toxicity in the workplace, contact the Human Resources department. If your company does not have a HR department, set up a meeting with your boss or manager. If you continue to be pressured to not take sick days, to put your job before your health, this may be time to look for another job and boss that cares about you and allows you to put your health first. 

On this note, being able to call in sick has undeniable privilege. Many people across the world are unable to call in sick without suffering financially or being penalized at work. Openly having these hard conversations during the hiring process or with your HR department will contribute to breaking the stigma and providing accommodations for those that are chronically ill. It’s important to speak with your boss or HR representatives regarding sick leave, paid sick days, and working from home options. Speak up to your government representatives and express the need for a handful of mandatory paid sick days across your province or state.

Pandemic, Lockdown, Isolation and Chronic Illness

It has been almost a year now and we are still in the middle of a pandemic waiting for our lives to return to normal. However, reality may never be the same again. 

So much has changed, but it seems like nothing and it makes it difficult to feel the comfort of real security.

My return - and the return of many other patients with chronic conditions- to normality may be further away than most of you. But I know that all this is equally difficult for all of us. 

They say that only the elderly and people with underlying diseases are at risk. The vulnerable population. 

But what happens when you are the vulnerable? 

I belong to those who they call vulnerable. I never hid my illness nor was I afraid of the stigma. 

I look young and healthy, but I’m not! 

I’m immunosuppressed, which makes me vulnerable to any kind of infection. 

We have been in lockdown for months. This is certainly not easy, nor is isolation.

I understand that it is difficult to change your daily life, but do you know how many times we, the vulnerable, have changed our daily lives not because we wanted to, but because our health imposed it?

How many times have we canceled a plan at the last minute, favorite foods we stopped eating, parties we missed and much more?

For those of us who are vulnerable, it is not so foreign to stay home, since we have spent long stays in our home and before COVID-19. 

I am in quarantine for a long time. It is not easy, it dissolves your mood, your body. Staying home is unbearable for everyone. 

Isolation, despair. 

And it is now that we are all looking for ways to balance our security with our contact with the world. 

All of this is not so foreign to me. I have some chronic illnesses that require me every day to choose what to do and what not to do. Even before the pandemic, I was very careful, evaluating what was safe to do and what was not. 

I do not understand big differences in my own life now with quarantine; that I am not allowed to be touched, that I can not go to the hospital and maybe two or three more things.

And recently I made a finding that has a lot in common with today's reality. 

I realized that my illnesses will never leave me, while a cure seems like a distant dream for now. 

Yes, I can take steps to improve every day, but what I thought as “normal” in previous years may never come again. For many years I waited for the cure to continue my life. Now that I accepted that I would carry my diseases with me, I gained freedom. My goal now is not to be cured, but to live better. 

So as I realized that it is not realistic to wait for the cure to live, so is the pause we have entered because of COVID-19 until our life is “normal” again. 

And this is the real challenge: how to move on and stop waiting to get back to normal.

Stay safe! 

Challenges as a Crohn's Warrior in Malaysia

In Malaysia, Crohn’s disease is also known as “Western Disease” or “Rich People Disease.” The reason behind this is mainly because Crohn’s is a rare disease in Asia,  particularly in Malaysia, as compared to Western countries. Many in Malaysia have never heard of this disease. Therefore, they are not aware of the Crohn’s and colitis patients’ struggles with their pain, medical procedures and psychological issues. 

At the beginning stage, I had no one to guide me. I had no idea on how to handle my newly diagnosed disease. With no medical background, no one in the family or friends with similar conditions, I struggled to cope with this disease and my normal life. Can you imagine the struggles I faced as a first year university student with my condition? I was  alone and I didn’t even understand what was going on and my normal was no longer a  normal. The internet was my only resource for information other than my doctor. By reading  everything I could find in the internet, I slowly started to understand this disease. Back then,  there wasn’t even a support group for Crohn’s in Malaysia as the disease is relatively unknown to Malaysians. In fact, I didn’t even known about any other Crohn’s patients until I  met one almost a year later after my diagnosis. My gastro doctors encouraged me and other patients to start a group so we could create a support system to each other. Now,  newly diagnosed Crohn’s patients or caregivers in Malaysia have access to few channels  that they could use to discuss, ask, guide and support each other going through this painful disease. 

Living with chronic disease, I had to adjust and adopt to new diet and lifestyle.  Changes in diet were mostly trial and error in the beginning. I had to monitor my  consumption and take note of any changes. Why did I have to monitor those changes? It is simply because I wanted to avoid flare ups that were caused by certain food that I consume.  For me, I found that my Crohn’s is mostly under control when I avoid foods that contain eggs. So I have to ensure my daily food consumption is egg free. If I didn’t, I’d have to visit toilet frequently the whole day. Precaution is needed for Crohn’s patients because flare ups can happen in any situations, therefore any heads up is a good one to have. 

Apart from my diet, I had made some massive changes to my daily activities too. Since I’m an Ostomate, I have to ensure that I don’t partake often in hardcore sports in order to avoid stoma prolapse. 

The understanding and acceptance of IBD in society is still a challenge for me. Most of them, as  I mentioned above, do not know about Crohn’s disease. I remember one of my friends asking me “Sara, is your disease infectious?”. At that time, I just laughed and say “No, it  doesn’t”. The lack of awareness, although understandable, is a huge disappointment when  someone I confided in is not taking any initiative to understand it.

Stress is another thing that I started to consciously manage. What is the connection  between Crohn’s and stress? Well, stress generally affects a person emotionally and mentally as it damages a person’s emotional equilibrium. But it also affects the person’s health. Even a person without chronic disease can feel their health being affected by high stress levels. So, anyone with chronic health issues, such as IBD patients, have higher  chances of having a relapse and flare when they are stressed. It is imperative that I  recognize my stress inducers, my stress level, my tolerance level and ways to reduce stress  so that I do not have chronic flare ups. Although it is impossible to live stress free all the time, I  believe that I should try to manage stressful situations to the best of my abilities.

Navigating relationship with Crohn’s is complicated and challenging. Crohn’s has created ups and downs in my relationships with my family, friends and loved ones. In the beginning it was really hard to explain to them my condition. They did not understand the condition or why and how I got this disease in the first place at all. It took a while for my  family to accept my condition and now they are slowly getting used to it. They are a great  support for me at the moment, and my heartfelt thanks. 

Dealing with Crohn’s is tough enough and unfortunately, Crohn’s is not something  that we can ignore or that it will disappear one day. Every single day is a challenge for me because I go through physical and psychological pain. I have to survive, improve my quality of life and live my life as normal as possible; I hope more people will become aware of  Crohn’s disease, of patients’ struggles, and accept their conditions. Be kind even if you don’t see someone’s struggle, their pain or their decreasing health.

The Difficulty of Finding a Treatment

For the ordinary individual, health is accepted as a given. It’s a part of life that mostly runs in the background like a minimized window on a computer. It’s always running, keeping us alive, and impacting our physical and mental states. Yet again, for most people, it’s rare to directly confront it on a minute to minute, or even second to second basis. Instead, it emerges at the forefront of life either by active and deliberate personal choice, or when something goes wrong. When a previously silent computer program running in the background becomes unresponsive, what was once insignificant becomes a major issue. To a greater extent, when that disruptive program causes our computer to crash and lose all of our work, it’s catastrophic. In a similar way, the typical individual goes to the doctor only on the occasions when their health is compromised by infection, injury, or other issues. Plus, when our health is stable and we are well, the changes we make, like starting a fitness regime, new diet, or implementing mindfulness strategies to our lifestyle, are done by choice.

However, when you live with a chronic illness, health management becomes significantly more complex. For one, chronically-ill patients often do not have the benefit of having a lifestyle defined by stable health. Chronic illness is by its very nature unpredictable. Diseases like Crohn's disease and ulcerative colitis revolve around periods of peaks and valleys - remission and flares. Once again, living with a chronic condition transforms the nature of managing health. The process of searching for, utilizing, and adjusting to a treatment for inflammatory bowel disease, or other chronic conditions, is one of trial and error. Unlike treating the common cold or a broken bone, the path to recovery is much less clear cut. Personally, I have tried various medications across a variety of different medication classes only to discover that they were not effective for treating my particular case of ulcerative colitis. It takes constant monitoring of your symptoms, and a commitment to embracing change to successfully navigate the healthcare system as a chronically ill patient.

It’s a difficult reality that many patients struggle through countless medications, clinics, and treatments before finding relief. Simply put, when you live with a chronic illness, your health is never certain. It’s unlike managing short-lived, common conditions, because there’s no clear timeline. Patients are forced to adjust to a new normal. This new reality is a reality where an individual must persist despite burnout, despite anxiety, and despite certainty. It involves significant sacrifices in one’s lifestyle, and even identity. Confronting health is no longer a special event or a choice, instead it’s a part of the daily routine. I believe this is part of why accepting illness is full of so many emotions, and why fatigue can easily take over. Everyday, patients are fighting a difficult, and often invisible, battle while living normal lives full of other responsibilities. The process, and the challenges, involved with finding and managing treatment do not make this balancing act any easier. Thus, it’s important to recognize the difficult, frustrating, and exhausting experience of patients worldwide. After all, despite illness, set-backs, and struggles, we persist to live lives as friends, artists, and advocates.

Planning with Crohn's

Stay with me for this one – I promise it won’t be as boring as it sounds! If you immediately switch off when you hear the world ‘plan’, or indeed ‘regime’ or ‘strategy’, you’re not the only one! There are, however, benefits to planning when you live with a chronic condition like Crohn’s Disease – and more importantly, if your plans become routines, then they’re more likely to become second nature, and you’ll find yourself doing those tasks subconsciously. Here, I will share some of my planning tips, which you may just find helpful. It’s all about finding what works for you so that you can manage to fit in all of the things you want to do, despite your health condition(s).

Smartphone apps

There are tons of smartphone apps available to help you keep lists, plan activities and so on! I keep it fairly simple, making use of macOS/iOS Calendar, Reminders and Notes (or the same apps on other operating devices). The calendar function is ideal for noting down all of your appointments. This helps for looking to the future, but also looking back at when and where different events occurred. The reminders app is an absolute lifeline for me. I have separate folders for different activities (e.g. university, health, work, voluntary commitments and so on). I add in activities, and a date/time (or location) reminder. This definitely helps me to keep track of everything that I need to do. If I didn’t, I would definitely forget! From a health tracking perspective, this is ideal as a reminder for booking in my next vitamin B12 injection which takes place every three months, as well as for when I need to ring up my doctor to arrange routine blood tests, when I need to self-inject my treatment, and when I need to order my repeat prescription. You may think that you’ll remember everything, but when you are busy with ‘life’, on top of ‘brain fog’ which many of us can relate to, it’s easy to forget. I know I have done that in the past, particularly when it came to self-injecting my treatment. I would remember that I need it on Tuesday for example, which would be the two-week dose period. However, I would have a busy day at college, would forget when I came home, and then in bed at night, I would suddenly remember, and think ‘I’ll have it tomorrow’. But then tomorrow became the weekend, and before I knew it, it may be a whole week later and I still hadn’t given myself my injection. I knew that was no good, but I just needed to do something about it – which I did!

Finally, Notes are brilliant! Again, I have different folders for a whole variety of different items. ‘Health’ is one of those. I use notes for keeping track of how I have been feeling, as well as for noting down points to discuss with my healthcare teams. I also use notes to keep track of discussions held with healthcare professionals, either face-to-face or over the phone. It’s just another good way to have information at your fingertips to help with your care, while the discussions are still ‘fresh’ in your head. 

Scheduling in rest days

We all know what it’s like to live with a condition like Crohn’s – we have so much robbed away from us. As a result, when you are feeling on the better side, you will naturally try to fit in everything that you can. I know that I have been there! Though sometimes, it really doesn’t pay off. That’s why I try to give myself time and space to just ‘do nothing’ – because I know that’s what my body needs. In pre-pandemic times, I would avoid booking in too many back-to-back travels, so that I always had some time to recover. In the current climate, I do my best to block off certain days where I’ll have meetings, keeping overs ‘free’ to do work at my own pace, and also take it easy. It’s all about being in control, as much as possible, so that you give your body (and importantly, your mind) the time and space to breathe.

Leaving the house with everything that you need

Phone. Wallet/purse. Keys. Mask! The list goes on – but it’s really important to have everything that you need to hand. As well as the usual items that most of us require these days, I also have supplies in my backpack and car for every eventuality. This includes painkilling tablets and gel, anti-spasmodic tablets to help with cramps, laxative tablets if I notice a blockage, anti-diarrhoeal tablets if the opposite happens, lactase enzyme to help me digest products containing lactose and the RADAR key to access locked accessible toilets. This list can go on and will depend on personal circumstances. I always find it best to have everything stored in one bag, so you can ‘grab and go’. It may feel excessive, but you will thank yourself later on when you’re not caught short.

Knowing your triggers and avoiding them

Although everyone is different, we all have some kind of trigger which can worsen how we feel. For me, I know that stress is a key trigger for worsening symptoms. That’s why I try to minimise stress as much as is practically possible – although that is much easier said than done! That’s why you’ll generally see me planning to do work well in advance of deadlines, for example, and seemingly ‘being on top’ of everything. In reality, it’s much harder to do, and I do find myself rushing for deadlines still – but at least I have minimised that as much as is practically possible. I am also my own worst enemy. As a perfectionist, I place huge amounts of pressure on myself to succeed and to do everything to the very best of my abilities. While it’s a good quality to have, it isn’t when it impacts on your health. So, it’s really important to be kind to yourself, and to re-evaluate your workload if you find yourself totally swamped and feeling ill. Nothing is worth more than your health.

Do you have any other planning tips which help you to live with your condition whilst getting through life? Let us know in the comments and on social media! 

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.

What to Expect When a Loved One Gets Diagnosed with IBD

Navigating an IBD diagnosis is not easy. It can be messy and emotional and very tiring. The person diagnosed with IBD will be feeling many emotions, probably all at once. But it’s not just hard on the diagnosed individual; it can be very hard on their loved ones as well. It can be difficult to figure out what to expect and what to say and how to act when you find out someone was diagnosed with Crohn’s disease or ulcerative colitis. Hopefully this article will provide some insight into what to expect when that diagnosis happens. 

The first few hours and days after your loved one gets diagnosed with IBD can be very confusing. You are processing their diagnosis, while trying to be there for them as well. While everyone processes it differently, there are likely some common reactions you can expect. Here are a few things to keep in mind:

• Be prepared to simply be there for them. Whether they want to talk about it or not; whether they want you to accompany them to appointments or infusions; whether they want someone to sit with them while they are sick. And even if they don’t want any of that, make sure that they just know that you will be there if/when they do. Be there for them when they are ready to talk to you. Tell them you are there if they need anything and be ready to back it up with your actions. There is nothing worse than empty words. 

• Be prepared for them to become experts on their own bodies. They will become very familiar with their symptoms and will likely know when something is not right. Learn to trust that. If they tell you they think something is wrong, don’t try to argue with it. 

• Be willing to learn with them. For me, I read up a lot on my diagnosis. I read others’ stories, I read articles, I read medical journals. And I wanted my friends and family to understand some of what I was learning. So, be willing to read the articles they send you. Educate yourself on their disease. Don’t be afraid to be educated. 

• Be ready for the hard days. The days when their medication isn’t working. The days when their Prednisone is making them miserable. The days when they are in the hospital. Not every day will be hard, but some will be. So be prepared when they come. Remind your loved one that it won’t last forever. 

• Also be ready for the good days! The days when they find out they’re in remission. The day when they try a food they haven’t been able to eat in a while and it goes well. The days when they feel like themselves. Just as the bad days come and go, the good days will come, too. 

• Be ready for the doctors’ appointment. Especially when your loved one is first diagnosed and they are working to get control of the disease, there will be a lot of doctors’ visits. There will be ER visits and hospital stays. There might be infusions they have to go to on a regular basis. They may or may not want you to come. Be ready to support them either way. With COVID, they may have wanted you to come and you may not be able to. If that’s the case, try to get creative with ways to make them feel like you’re there. FaceTime them, call them, text them. Do something to make them not feel so alone. 

• Ultimately, be ready for a journey. It isn’t always easy and there will be really hard days. But your loved one is now part of a community that is welcoming and ready to help when they want. There will be people that they can relate to and that can understand them in ways that someone without IBD can’t understand. Encourage them to reach out to people they see on social media. Encourage them to ask questions and not be afraid to speak up. The IBD community is a great one and people are always willing to help! 

Navigating a loved one’s IBD diagnosis can be a daunting thing. It is a lot to process and there is a lot of unknown. But by just being supportive and being attentive to your loved one, things will probably go a lot better than you expect them to. 

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.

Crohn's in College: The importance of understanding flare-ups and your disease

By Erin Ard

I've been living with #CrohnsDisease for 11 years, but even with years of experiences, mishaps, and triumphs, I feel I'm still learning how it affects me. One of the biggest realizations happened recently when I was in college. Around my junior year I had hit a wall. It was becoming increasingly harder to navigate my studies and my energy level was draining rapidly. I had been taking classes year round for three straight years, taking classes in the summer and having heavy, difficult course loads to accommodate my second major and research. Unbeknownst to me, I was actually neglecting my health.

I started consistent Remicade treatments in high school and the difference it made was 100 fold. I went from an underweight, fatigued freshmen to a strong, motivated sophomore. The change was so positively significant that I thought all of my worries about Crohn's were behind me. I could eat good food again! And play competitively in sports! And I carried this mindset into college. I thought my struggle was over and could focus all my energy on school.. And I carried this mindset into college. Turns out I was wrong.

After a few painful semesters I started to realize what was happening. I was starting to get burnt out, I was sleep deprived and running on fumes. I was struggling with my motivation and my anxiety was building. Though seemingly dormant, my Crohn's disease was still affecting my mind and body.

I had ignored all of the signs up until this point. The fatigue and anxiety I felt in classrooms. The random little fevers during an important lecture that distracted me. The joint pain that slowed my walk to class or hindered my ability to exercise. The gut discomfort during an exam that forced me to finish quickly to get the hell out of there. And finally the gut-wrenching pains that made it impossible to walk. Everything added up, but it took me three years in college to see.

Starting my senior year I sought accommodations from our Disability Center on campus, which alleviated most of the worries set in place by my Crohn's. However, I was left wondering.. Why did it take me so long to figure out Crohn's still had a big impact on my daily life?

Essentially, it came down to my personality and one big misconception. During the initial stages, Crohn's had such an emotional impact that I've always tried to shut it out. In shutting it out, I failed to seek out information from outside resources and tried to figure it out on my own. In doing so, this lead to one big misconception around the focal point of Crohn's disease - flare ups.

I never generally understood what they are, their causes, how to help remedy them, and everything else. See, before I went on Remicade I was in a constant state of flaring up. I was unable to get it under control long enough to have a normal bowel movement. Which meant I wasn't able to eat much and I didn't have a lot of energy. I lived off of my mom's homemade chicken noodle soup and mashed potatoes because they were the only meals gentle enough to my gut. Here is what I have learned since then.

Flare-ups are periods of time when the disease becomes active and symptoms reappear. They consist of prolonged symptoms like gut pain from inflammation, diarrhea, blood in the stool, fatigue, and/or weight-loss. How long the symptoms last and the severity of them is different from person to person. Some medication, like Remicade/Renflexis/Infliximab, is specifically used to control symptoms enough to enter remission (i.e. an absence of symptoms or inactive disease), which means no flare-ups! Medication may be combined with other meds or diet restructuring to help keep symptoms under control. Over time, however, the same treatment regimen may not have the same affect. So adjustments in type of medication, dosage or frequency, or further diet modifications may be needed. Here, this whole time, I had thought of my disease as in remission, inactive, and needing no more thought. When in reality, it's going to be an every day effort.

See this article from Very Well Health to learn more about flare-ups and different ways to define remission.

My personal tip is to pay attention to what your body tells you. Focus on whether certain symptoms are still present - do you have gut pain? Diarrhea? Painful bowl movements? Other non-gut related symptoms? Pay attention to how long these symptoms persist and take notes. This might mean your Crohn's or Colitis is still active and it's important to tell your health team. If one thing just isn't doing the trick, there might be additional options to help you reach your potential in healthy living. And if you haven't already, seek out information about the disability center on your campus!

I've recently started to pay more attention to my body's responses. What used to be my response to the question, "What can you eat?" has changed from, "Oh, I can eat anything!" to, "Well.. I'm still trying to figure that out." In all honesty, I AM still figuring it out. Though certain foods don't affect me like they did before medication, they still influence how I feel. And it is my responsibility to make sure I take care of myself by eating the right foods and not the wrong ones.

Be attentive. Always seek a better understanding. Don't be afraid to ask questions or ask for help. And most importantly, take care of yourself!

5 Things to Know Before Flying with IBD

By Leah Clark

Having just returned from a trip across the country, several travel tips about flying with inflammatory bowel disease are fresh in my mind. Whether your chronic condition is active, in remission, or anywhere in between, these five tips can help make traveling with #IBD a lot smoother and ensure that you can be prepared, calm, and have fun on the way.

Flying with IBD shouldn't have to feel like a constant state of turbulence. Follow these simple tips to ensure that your flight is a breeze.

1. Know Your Surroundings

Many people with inflammatory bowel disease need to take frequent trips to the bathroom, and that can be difficult when put into an unfamiliar environment. Fortunately, most airports have bathrooms near every gate, as well as maps that can direct you to the nearest one. If you are concerned that you will need to use a bathroom and do not want to have an accident, try and stay near a restroom until your flight is boarding. Some airports have private bathrooms as well with one stall that can make going more comfortable.

2. Prepare Your Own Food

As someone with a #restrictivediet, I know how hard it can be to find food I can eat at an airport. Airplanes and airports often have processed foods that can be prone to cross contamination, as well as a limited selection of foods that are not nuts, chips, and sugary snacks. If you're like me and need to be cautious about your diet, I recommend packing your own food and keeping it in your suitcase until you are ready to eat it. Just make sure the items follow the TSA guidelines.

3. Pack Medications Strategically

Following a tight #medication schedule can be difficult if the medication is not easily accessible. It's important to pack your pills in a small travel carrier or pill box that can be brought on the plane in a carry-on bag. This way, your medication will be with you at all times and available for you to take it when needed. Be sure to have a beverage on the flight, or purchase one after going through security if you need to drink a liquid with your medication.

4. Choosing the Right Seat

Lucky day when you get a whole row by yourself, but choosing an aisle seat can also be a good choice.

Certain airlines, and depending when you purchase your ticket, will allow you to choose what seat you want on the plane. If frequent bathroom breaks is common for you, I recommend scheduling your flights earlier than later and choosing an aisle seat. This way, you will not have to climb over people or waste more time reaching the bathroom. If you cannot choice an aisle seat, it never hurts to ask the person next to you if they are willing to switch.

5. The Day Before

With IBD, sometimes we overlook some of the basic health necessities that need to be addressed: sleep and hydration. Fatigue and dehydration are not new concepts to us, and it's important not to forget about these when traveling. Getting a good night sleep before the trip, as well as drinking plenty of fluids is very important. It's a good idea to take a nap on the flight (if able) and drink water while in the air, as well, when the travel day actually arrives.

Everyone's IBD is different and requires unique attention and care. It's important to know your body and know how travel affects it. Your IBD should not hold you back from living your best life and going wherever you wish. With these five tips, hopefully you will be better prepared and ready for whatever life in the air has to throw at you.

Love Yourself and Love Others: How I Started Recognizing the Support Within and Around Me

By Erin Ard

In honor of the month of #Love, I decided to write about one of the most important forms. #SelfLove!

Embrace every part of you. Your quirkiness, your sense of humor, your shyness, your health (and that sometimes, you CAN take a good picture).

You've probably heard the phrase "You can't love anyone else until you love yourself." It's said, with good intent, to almost everyone who is trying to find self-worth in another person's eyes. I am no expert on love, so I can't say this is always true. However, I do know that dealing with chronic disease, especially throughout your teen years, can wreck your self-esteem and ability to love yourself. *Ahem* speaking from experience.

I want to share how I learned to accept the terms of my new life, let go of internalized negativity, and love myself as I am. It took me years to recover emotionally from all the changes I faced because I never fully accepted that I had a #ChronicDisease.

I started to take strides in college when I began thinking mindfully about my experiences, emotions, and actions in every situation I faced. Introspection was my first step towards acceptance and being #mindful was my strategy.

I used mindful meditation to reflect on everything in my past and present. I became aware of my thoughts, emotions, surroundings, and accepted them without judgement. It helped relieve my stress as a busy student and appreciate everything around me while living moment to moment. Before mindfulness, I would often dwell on my flaws and insecurities, to the point that I had lost sight of my worth. Now, whenever my mind wanders or spirals, I accept my thoughts, bring light to them, and move on. The simple act of being mindful restored my self-confidence and helped me find my identity outside of my chronic health issues.

A little surprise from my sweet, forever valentine.

As I sit, writing in my old bedroom from high school, I'm starting to reflect on all the love I had even at my lowest. I now recognize the love I lacked for myself and the support that surrounded me from family and friends. My closest friends and family understood me and how the disease affected me. Because of them, I was able to overcome many trying events.

This month, my #mantra has been to love yourself and love others. I've learned that you're never really alone, even when you think you are. There is always someone thinking about you, worrying about you, or just wondering how you are. You will be surprised by the influence you can have on others. As a cute example, take a look at what my little brother made for Valentine's Day!

Remember to appreciate your own strength and the people who continue to support you.

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If you want to learn more about the influence of mindful practice, check out this article on the stages of grief in chronic disease.

With love,

Erin