Major Life Transitions: IBD and Starting Graduate School

As a young adult who lives with IBD, feeling safe and secure is almost as necessary as breathing air. Navigating the endlessly winding path of chronic illness has caused me to be more aware of my environment and how it affects me. Through this, I have come to find solace in my environment. After getting accustomed to this sense of safety, I finally found comfort. But, what happens when that sense of comfort and stability is challenged?

Recently, I just moved 500 miles away from home to attend grad school. This was probably one of the most impactful decisions I’ve ever had the privilege of making. While the process of moving for grad school is difficult for everyone, I want to emphasize the added barriers that chronically ill people face. After I received my acceptance letter from the University of Pittsburgh, I was overcome with joy. Finally seeing the fruits of my hard work, determination, and labor was extremely validating. Shortly after this period of elation, I immediately became overwhelmed with intrusive thoughts such as “Well, can I really move away from home with ulcerative colitis?”, “What happens if I flare again?”, “I don’t want to leave my doctor.” I tried to give myself space to feel my emotions, but it was still difficult. Ultimately, the decision to move was clouded by, what I like to call, health hesitation.

Not only did I have to deal with the social pressure of applying to grad school, I also had to cope with the idea of being away from my established support system. I’ve worked so hard to build meaningful relationships with my medical team, so how on earth would I manage to completely restart? Something that I found beneficial was being open and communicative with my doctors throughout the entirety of the grad school process. My GI doctor knew the second I was accepted, she knew when I took my first flight to visit campus, and she knew about every important date leading up to my departure. Being transparent allowed her to assist me with navigating insurance, finding new doctors, and recommendations. This significantly helped with my transition and it helped relieve some of my health related anxiety. For myself, stress and anxiety are triggers for my symptoms, so mitigation is salient. This emphasizes the importance of advocating for yourself and being open and honest with your doctor(s).

An important tip I would give someone moving for grad school is to be proactive about setting up doctors appointments before you move. Prior to moving, I made sure that I had the basics down, like dentist and eye doctor visits. Getting the lower priority appointments out of the way definitely eased some of my anxiety. This also extends to being proactive about finding doctors once you arrive. The process is very overwhelming, but I found that taking these steps helped mitigate some of that stress and anxiety. A second tip I would give is to check to see if the school you're attending has an on-campus pharmacy. I, like many others, have quite a few necessary medications and transferring to a new pharmacy can be a bit of an undertaking, especially when it’s out of state. For example, The University of Pittsburgh has an on campus pharmacy that takes care of insurance and the medication transfer process in a quick and efficient manner. Never hesitate to seek out local resources, especially through your campus disability resources center.

In summation, no one experience is going to be universal. We will all experience our own set of unique trials, anxieties, and stressors. With that being said, moving for grad school is a decision I will never regret. If I ever feel like second guessing myself or I get discouraged about having to restart everything, I always like to remember that this experience is an investment for my future, both professionally and personally. Always be vocal and advocate for yourself, especially when seeing new providers, give yourself space, try to quiet that health hesitancy, and enjoy your experience. If I can do it, anyone with IBD can do it. We are all capable of withstanding hardship!

This article is sponsored by Connecting to Cure.

Connecting to Cure Crohn’s and Colitis is a grassroots, volunteer organization that brings together the IBD community with a focus on caregivers and families. Connecting to Cure Crohn’s & Colitis provides community and support for those coping with these chronic illnesses, while raising awareness and funds for research as well.

LEARN MORE ABOUT CONNECTING TO CURE

Tips to Improve Your Quality of Life with a Stoma

This article is by Saravanan Nagappan from Malaysia.

Photo by George Becker from Pexels

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Many of my ostomy friends confided that their life has changed since they became an ostomate. They feel their quality of life has deteriorated after having a stoma. They are unable to enjoy their life as before they became an ostomate. They mention changes to their diet, workout, and their social activities not remaining the same as before. Yes, I have to agree with them, because what they say is a common fact for an ostomate to experience and I personally faced the same issue as well even a decade being an ostomate, still my life is not the same as before. I’m going to share with you a few tips on how I have managed to reduce the impact a stoma has on quality of life based on my experiences.

Accepting your new life as an ostomate

The first tip is acceptance. We need to accept that we are ostomates and prepare for it both mentally and physically. At the end of 2011, my surgeon approached me and suggested that I have to go for Ostomy surgery as it was the best way to heal my fistula. My surgeon informed me regarding the complications I would be facing. At that time, I was confused and worried. I took a few days to decide whether I want to do it or not. The decisions involved many considerations, especially the changes in my life that come from being an ostomate and living my entire life as one afterward. After a long discussion with my family, I finally agreed to go for the surgery. I psyched myself up mentally by listing the benefits of this surgery and the changes it would bring to my life especially the physical ones. Since I accepted my situation and geared up for it, post-surgery changes were not monumental. My goal at that point in my life was to heal my fistula and get my Crohn’s under control. It was more than enough for me.

Adapting to new norms

The next piece of advice is adapting to new norms. This is important for an ostomate because a new ostomate is like a newborn. We are reborn into a new physical self and the changes it brings to our routine are something we have to relearn all over again. Without a choice, we have to adjust to new norms. Common new norms are our diet, daily routine, and social activities. It’s impossible to change everything overnight, but focus on small changes in our daily life and we will be able to see the impact in the long term. Once we learn how to slowly accept and adapt to our new norms, we will find it easier to live our life as an ostomate. The problem occurs when we refuse to accept new changes or routines. Inability to accept the changes can lead to deterioration of life quality.

Pre-planning your days

The following tip is to pre-plan. Pre-planning everything you want to do is one of the ways to improve an ostomate’s quality of life. Pre-planning a daily routine or outing is common in anyone’s life. However, it could be an essential habit for an ostomate. For example, assume that you need to attend an event in a few days’ time. In order to attend this event, you need to pre-plan your diet so you can avoid any food that can cause gases. By doing this you may avoid visiting the washroom all the time in front of others and enjoy the event more. Not only diet, but you can also pre-plan for other matters such as your physical and emotional wellbeing as well. Remember pre-planning can help to prevent any last-minute mishaps or emergency withdrawal from a situation.

Physical exercise for a better quality of life

As a final tip, I personally suggest that ostomates perform some physical exercises. After my surgery, I thought that my workout routine had come to an end. However, my thoughts had changed after I met a few senior ostomates. They advised me to not abandon my workout and they guided and motivated me on how ostomates should do their workouts. I started again with basic workout routines and challenged myself to go for the harder level. So how do workouts improve our quality of life? Doing physical exercises help to build our body muscles, reduce unwanted fats, keep our body fit and flexible and also improve our blood circulation and digestive systems. Moreover, workouts help to remove toxins from our bodies. which will keep our bodies healthier. Exercises also help to keep our minds active and create more positive energy within us. All these could tremendously improve ostomates’ quality of life.

In a nutshell, ostomy surgery is a life-saving procedure for many patients. Therefore, it should not be treated as a burden. Rather, we must take our own individualized care and explore new choices to improve the quality of life after ostomy surgery. I hope these tips can help you in your ostomy journey.

Let’s control our quality of life, it is in our hands!

Growing Pains: IBD Lessons Learned from the COVID-19 Pandemic

In March 2020, the COVID-19 pandemic turned the world upside-down as we knew it -- that, in and of itself, is already the understatement of the year. Disability activist Alice Wong spoke of how the nation’s need for ventilators in hospitals directly conflicted with her needs as a disabled patient; Tiffany Yu, founder of Diversability, used her platform to raise awareness of transparent masks for easy lipreading access. Already, at-risk patients suffered from a lack of attention and space, only for this to be exacerbated by a public health crisis. 

However, the pandemic also offered a chance for those with disabilities, and specifically IBD, to rethink our routines and lives. For example, in my own experience with Crohn’s disease, I’ve found that staying at home during the school semester had me re-thinking all my prior decisions in my relationship with food. It was, in fact, possible to regulate my diet and work in my medications without compromising my education -- the flexibility of virtual classes in university had opened up a new way of life for myself, one where I could sneak off to the bathroom during lecture without worrying about missing key points or bumping into desks. 

Living with Crohn’s, it often feels as though my time is not my own. This phenomenon of constantly running on other people’s schedules is not exactly unique to Crohn’s or IBD as a whole -- in fact, it refers to a concept known as ‘crip time,’ in which society and its timetables ought to bend to meet the needs of disabled bodies and minds. It’s a community-inspired term that essentially encourages us all to work on our own time, taking up space as necessary to meet our individual body and mind’s requisites. 

Whether it’s knowing where the nearest bathroom is, or having accommodations to turn the Zoom camera off, accessibility is an essential cornerstone of working with IBD. As a college student, I’ve found that communication with professors and administrators has become easier in a virtual setting, allowing for flexible office hours and minimal commute to buildings. In all workplaces, key lessons should be taken and continuously applied from the pandemic, particularly in regards to accessibility for disabled folks. 

With this being said, a major caveat is that we as a society are almost always ‘plugged in’ or online -- being available on Zoom has made it near impossible to draw the (much-needed) line between home and the office, allowing professionals to work around the clock. As the world shifts back to a new state of burgeoning normalcy, may we all remember the importance of accommodating disabled folks in the workplace, in-person and virtually. 

For those with IBD or any chronic illness, it is of the utmost importance that we too learn where to place boundaries in our work lives, prioritizing our physical and mental health above all. 

Self-Care and IBD: Tips for a Healthy Post-Surgery Routine

Just this past June, I was rushed into the emergency room for examination under anesthesia (EUA) to address internal fistula and abscess formation. As life would have it, this was the same week that I was to start my D.C. internship in the Senate; with the new intern orientation ticking around the corner, I found myself drowning in anxiety just sitting in the emergency room. 

In a short amount of time, I had to manage my stress levels while planning for what my new summer life would look like post-surgery. With that being said, here are three tips to handle your post-surgery: 

1.  It is your choice on how you tell your immediate circles about your surgery. 

Sharing news about going into the operating room, especially under short notice, can be harrowing. In today’s age of social media, it often begs the question of how much is appropriate to share with our followers or our close friends. Remember that it is ultimately your decision as to when and how you tell your friends and close relations about your situation. 

Do not feel pressured in any way, especially regarding confidential medical details. With that being said, it can be comforting to know that caretakers and family will be there for you after your operation -- make sure you have the support you need to the extent to which you feel comfortable.

2. Treat your energy and capacity as if they were spoons.

Allow me to explain. One mentality that has radically changed the way I approached self care was the spoon theory: if one were to imagine their energy supply as a finite number of clean spoons they had to use throughout the day, then it is a matter of strategy on how one should distribute their spoons for the day. 

This tip can be applied to all aspects of life with a chronic illness, but especially after surgery. Don’t be afraid to prioritize yourself and your health during your postoperative recovery period. Those of us with IBD and chronic illnesses already have fewer ‘spoons’ to last throughout the day; as a result, we must be more mindful with our energy supply. Especially after surgery, we should focus on physical recovery and pain management above all.

3. Be kind to yourself. 

Sometimes, getting out of bed is the most you can do. Or, you might not even have the energy to sit up. What I’ve learned this past month is: you’re doing your best, and that’s enough. Every IBD patient is different; there truly is no one-size-fits-all answer. What I’ve learned is that living with Crohn’s disease looks drastically different from one patient to the next, creating what can be a very isolating and lonely experience. 

Nevertheless, with all these tips in mind, I would be remiss not to highlight how fortunate I feel to even have access to surgery and healthcare in the midst of the pandemic. I must also note that many of these tips are contingent upon the assumptions of having caretakers and a flexible routine, luxuries not afforded to many patients in more stringent economic conditions. As patient advocates, we should all be aware of the varying circumstances in which we all receive treatment. 

Undergoing surgery never gets easier, no matter how many times one heads into the operating room. However, I hope these tips can make your post-surgery transition a bit easier! Let me know what your self-care routine is like below!

Navigating Relationships with IBD

As someone chronically ill, feelings of guilt, FOMO, and loneliness can be all too familiar. The severity and unpredictability of IBD can take a toll on the relationships you have with others, including romantic interests, friendships, family members, and coworkers. When i was diagnosed with Crohn’s Disease at the young age of twenty one, i quickly became frustrated that my poor health was holding me back from participating in classic twenty something year old activities. My unpredictable and debilitating symptoms made it difficult to leave my house, to follow through with plans, and to eat and drink at restaurants and bars. At the beginning of my journey with Crohn’s Disease, I was overwhelmed with feelings of loneliness and guilt when I had to miss out on my college friends' activities. I kept my symptoms and diagnosis to myself, not really allowing any of my friends to understand how to include and support me. 

Sharing your IBD diagnosis with your partner, friends, and family is a terrifying and overwhelming experience. Naturally, we strive to hide our vulnerability, but I hope to deliver advice through my own personal experience to help nurture your relationships and ensure you receive the support you deserve. 

My best advice is to share your IBD diagnosis with the people you surround yourself with. We cannot control how others react to our diagnosis, but we can control what we share with them. I often tried to hide my illness from others, and then became frustrated when disagreements arose over my frequent cancellations from flares as well as feelings of loneliness from no one understanding what I am going through. It’s important to allow those close to you to know what you are dealing with. Remember, someone that loves and cares about you will not be scared by your diagnosis, they will want to support you and be there for you in times of need. The first thing you need to do is allow them the chance to show up and support you. Be honest about how your disease affects you, whether that be generalized as last minute cancelations or going in-depth about the symptoms you experience. 

Remember your self worth. You may have inflammatory bowel disease but IBD does NOT define you. You have amazing, unique and loving qualities that make you amazing with or without IBD. Whenever I have trouble separating myself from my IBD diagnosis, I write down 5 things that I love about myself, whether that be my passion for helping others, my love for animals, or anything else that makes me, me! 

Ask for help. Be honest about your needs as someone with IBD, especially when flaring or on colonoscopy, infusion, injection and surgery days. Your friend or partner might not know how to best help you. Try to be honest and communicate your needs and wants to your partner, friends, and family to be best supported.

Create boundaries. Every person with IBD has different needs. Be honest about what you like and don’t like. Create boundaries with friends and family, especially about unsolicited advice or anything that may bother you. Has everyone heard the ‘you should try ___ (sub: yoga, veganism, meditation, etc.) and you will be cured’? My advice to create boundaries without offending a loved one is to express your appreciation and thanks but highlight how every person with IBD is different and that advice like this negatively affects you. Again, put yourself first. If someones advice or actions are bothering you, speak up and share that with them. Most of the time, people are only trying to help and this will help guide them to most effectively support you. 

As someone dating with IBD, the psychological aspect that can join a chronic illness, along with physically feeling sick, can create obstacles in relationships. Communicating with honesty will allow all parties to a relationship to feel loved, wanted, and respected. I truly hope these tips will help you navigate and make the most out of your relationships.

Traveling with IBD: Tips On Navigating an Airport

Whether we’re celebrating an accomplishment, going on a vacation, or in my case, visiting a city before a big move, traveling is a rewarding and often necessary aspect of our lives. A topic that is not widely discussed is traveling while living with a chronic illness(es). We have to be more mindful about certain aspects of traveling that other abled-bodied people never have to consider. This was my first time traveling post diagnosis, which was extremely anxiety producing and almost dissuading in a sense. Why do I have to take extra precautions? I quickly learned that this form of self-destructive thinking was only preventing me from being present. 

I recently traveled to the beautiful city of Pittsburgh, Pennsylvania to take a tour of campus before I start my masters program, as well as getting a feel for the city overall. Throughout my trip, I made sure to record a few helpful tips, tricks, and pieces of travel and airport related advice that would make the overall experience less stressful for my fellow members in the IBD community. 

Traveling is a privilege that chronically ill people deserve to be afforded. Exclusionary language and barriers paired with a lack of resources and information can make the idea of traveling quite daunting, but these tips should make the reality of travelling more palatable. With the tail end of the pandemic emerging, we all deserve the opportunity to travel as comfortably and healthily as possible!

Tip #1: Store your medication in your carry on 

It’s important for us to have access to all of our medication at all times. I found it very helpful to store all of my medications in my carry on bag, in a small pocket that is easily accessible. This way it is easy to keep track and organize all your medicine so you can stay on schedule. 

Tip #2: Get a collapsible water bottle

As IBD patients, we know that we are at higher risk of dehydration, so we need to have full access to water. But wait, you can’t bring water into an airport, right? There’s a loophole! I bought a collapsible water bottle before my flight and I stored it in my carry on. It’s small, super convenient, and you can fill it up once you leave security. After your water bottle is filled, you are then able to take it on the plane. 

Tip #3: Check the airport map to find all bathroom locations

We all know the feeling of needing emergency access to a restroom, and this feeling is no different in an airport, if anything it's exacerbated. I found it extremely helpful to locate all the bathrooms before I arrived at the airport so I knew which ones were closest to my terminal. Many airports have detailed maps scattered around, and the Apple maps app also gives you a detailed layout as well! 

Tip #4: Stress management is key

Traveling can be very stressful on our bodies. In my case. Stress and anxiety are triggers for my symptoms, so finding healthy ways to mitigate that stress is super important. We all have our own unique ways of reducing stress, but I found that packing headphones and listening to music helps tremendously. Chewing gum is another simple and useful stress reducing tip! 

Tip #5: Be sure to get an AirBnb or hotel close to restaurants that cater to your dietary restrictions 

Trying new restaurants, eateries, and bars is an integral part of the traveling experience, but it can be rather difficult for those of us with IBD since we have many dietary restrictions. My tip is to research restaurants, super markets, or local grocery stores in advance. This helped me so much during my trip; preplanning can make all the difference. We don’t deserve to be robbed of the full experience, so researching options beforehand can increase overall satisfaction. 

While there are so many other tips that I could provide, these five were the most pertinent. Utilize these tips to ensure happy and safe traveling! 

This article is sponsored by Connecting to Cure.

Connecting to Cure Crohn’s and Colitis is a grassroots, volunteer organization that brings together the IBD community with a focus on caregivers and families. Connecting to Cure Crohn’s & Colitis provides community and support for those coping with these chronic illnesses, while raising awareness and funds for research as well.

World IBD Day: What's Something You Wish People Knew About Living With IBD As a Young Adult?

"What’s something you wish people knew about living with IBD as a young adult?"

Savannah:

As a young adult with IBD, I wish others knew how hard it is to balance nurturing our health while also taking part in classic twenty something year old activities. Not only do we have to focus on our health everyday but we are also navigating the world, discovering who we are and what we want to be. IBD doesn’t define us and our goals, but it sure does impact us on a daily basis and creates significant barriers. 

Andre:

Having IBD as a young adult robs you of fully experiencing your youth. Most of us are diagnosed between the ages of 18-26. These are formative years that will influence the rest of our lives, but we are not afforded the opportunity to experience the same highs as our healthy peers. This does produce a high level of perseverance, but the isolation and FOMO will always be present. 

David Gardinier: 

I wish people knew how much energy is at a premium for us. I feel like with IBD, I have a set amount of energy each day. If I use all that energy up during the day in my internship, I don't have any left for the rest of the day. This is especially true when I go out and play ultimate frisbee. I wish everyone else knew that I am not just being lazy halfway through the game, but that I actually get tired twice as fast as everyone else even though I am doing the same amount of work. It can be frustrating knowing that my disease will hold me back from performing the same as other people the same age I am. The more people that know how much fatigue impacts young adults with IBD, the more empathy will exist surrounding this disease in our population.

Jennifer:

Tackling a chronic illness as a young adult is overwhelming, to say the least. To fight a disease that can neve be cured, while simultaneously trying to figure out who you are and what you want to do with your life -- well, that’s hard enough as it is. I hope people can be compassionate towards young adults with IBD, realizing that we are battling a fight they may not always see.

Sara:

Many people have the wrong conception about young adults who live with IBD. They think having IBD is karma, especially for those from Asian countries because their life is filled immensely with strong cultural and religious beliefs. This thought that IBD is caused by Karma is unacceptable and should not be entertained. Living with IBD is not karma; in fact IBD patients are warriors. Young adults with IBD are brave and super strong people. In today's world, they face so many challenges in their daily life, such as family, relationships, finances, and social pressure. But still they never give up in overcoming those challenges and prove their life is beautiful.

Nathalie:

I wish people knew that living with IBD as a young adult does not make me too weak to handle things. Sometimes people keep things from me to protect me or because they think I’m going through too much to hear about someone else’s life. I believe these intentions are honestly kind, but it’s okay to ask for my support. My normal is different from a lot of other people’s normal and that's okay. I don’t feel like I’m going through too much and I don’t feel weak, my IBD isn’t tragic, it is just a part of my life. 

Kumudini:

I just wish that people knew it's normal for any human being to use washroom the number of times one wishes. Moreover, nobody is voluntarily willing or would like to time pass there. Its absolutely normal to miss appointments and give us the space of silence. We did not invite this disease by unhealthy eating habits. We never would like to refuse any yummy food, it's just that we love our intestine so much and we do not want to dump it with something which doesn't suit it.

Vasiliki:

Getting diagnosed with a chronic illness such as IBD is always a difficult condition. It is even more difficult when you receive this diagnosis at a young age. You suddenly find yourself dealing with issues that have to do with your health; you try to find ways to improve your health and balance the daily life of a young person with the life of a chronic patient. This is not always a straight line, sometimes you encounter obstacles and difficulties, but with will and effort you overcome them and move forward. The most important thing for me in this whole journey is to find allies who can support you and help you effectively. Αnd of course in no case do not give up your dreams. Τhe difficult days will come and go, but life is in front of you even if sometimes it is cloudy. Remember that you are more than your illness! 

What is a Healthy Diet?

Back when I was in college, I had a professor who hated the word “healthy”. She argued that the word had no real definition. At first, I am not sure if I agreed with her. Surely it was safe to say that something like spinach was a healthy food, right? It has fiber, loads of vitamins and minerals, and is low in calories - perfect health food! As time went on, and I thought about it more and more, I discovered she was right. There really is no one definition for the word healthy, because it applies differently to each of us.

Every person has their own goals as far as their health. For a bodybuilder, gaining muscle might be considered healthy. For a sprinter, something healthy might improve their times on the track. For others, healthy is eating in a way that will help extend their life. You can see that it isn’t as simple as slapping the label “healthy” on a food and calling it a day. 

One of my favorite examples is birthdays. It doesn’t take a nutrition expert to know that birthday cake doesn’t improve physical health, but what about mental health? The goal on birthdays has never been to help you sculpt that hot summer body, but rather to celebrate with friends and family. It is a time to feel joy that we have made it another year on this Earth. If taking the birthday cake away harms that goal, well then the only conclusion I come to is that birthday cake is health food. Don’t tell anybody at the hospital I work at I just wrote that.

What about for people with IBD? What does a “healthy” diet look like for us? Having an interest in nutrition as well as IBD, I wrestle with this question a lot. I know that for the general population, foods like broccoli and brussel sprouts have been shown to reduce cancer risk, among other benefits. Therefore, they would generally be considered “health food”. But for somebody in an IBD flare, you might be better off roasting a package of nails at 350 in the oven for dinner. All that roughage is just going to result in pain and irritation as it passes through the inflamed intestine. For an individual with IBD who is in a flare, broccoli and brussel sprouts might be the furthest thing from healthy food they can eat.

That is why I think it is so important that we all understand the temporary and individual nature of the word healthy. It is not set in stone, what is healthy for you to eat today might not be healthy for you tomorrow. You should never be ashamed because you are not eating what the average person would call a “healthy” diet with this disease. That isn’t to say that you shouldn’t pay attention to diet at all. Your definition of a healthy diet will depend on your goals, which will most likely be very different from the friends, family, and coworkers you interact with on a day to day basis. Don’t compare apples to oranges. Take the time to define your health goals, and then determine what foods will help you reach those goals. Find your healthy diet.

Preparing for your GI Appointment

When your health is on the line and you have unlimited questions about your IBD flare, the anticipation to speak to your Gastroenterologist can be overwhelming. My heightened anxiety before and during my GI appointments would cause my mind to go blank the minute I sat down with my doctor. Negative or serious news can cause forgetfulness and wandering thoughts after the appointment, leading to me questioning the advice I was given. Throw the current coronavirus pandemic into the mix and things become even more complicated. Here in Canada, majority of medical appointments are now conducted over the phone contributing to a loss of connection and personable service. Medical appointments can be emotional rollercoasters, especially when receiving potentially life changing news about your illness and treatment plan. Below are four tips that will allow you to be best prepared for your medical appointments and will help minimize the stress, emotions, and feelings of frustration that may accompany the crucial medical appointments with your IBD specialist.   

Tip #1: Write down your questions 

Writing down all the questions and concerns you have before your appointment will ensure you remember to bring these topics up. Create a note in your phone or notebook ahead of your appointment and write down any questions, concerns, or notable symptoms you are having that you’d like to discuss with your doctor. Organize these questions and concerns in categories to easily hit all the topics in a simple and efficient way. Some great category suggestions: symptoms, medications, surgery, diet, accommodations, or any that work for you! Make sure you pull out your notes during your appointment and refer to each one, checking them off as you go. This will result in leaving your appointment feeling satisfied that you shared all your concerns with your GI and feel confident in your treatment plan. 

Tip #2: Bring a notebook with you 

Waiting for a medical appointment and then forgetting what the specialist said is the absolute worst feeling. Bring a notebook with you and write down any important suggestions, advice, medications, or risks your specialist speaks about. Anxiety and nerves can be high during an appointment leading to forgetfulness. If you write down quick notes about the conversation, you will be able to more easily remember the conversation afterwards and feel a sense of peace with the appointment. Not only will you have a better understanding of your treatment plan but your doctor will respect and sense the seriousness you are taking to fight your Crohn’s Disease or Ulcerative Colitis flare. 

Tip #3: Audio record the appointment 

Audio recording the conversation provides a simple and easy way to playback the conversation when you forget or want a refresher of the treatment plan your doctor provided you. This way you can easily save all your recordings to look back on in the future. Remember to ask your doctor for permission before recording! You can easily record the conversation with a recording app on your phone. 

Tip #4: Bring a friend or family member with you 

Attending a doctor appointment alone can be nerve racking and anxiety-inducing. My biggest tip is to bring a parent, a close friend or family member with you and bring them up to date on the reasons for your appointment and the questions and concerns you have. Another great idea is to give them a copy of your questions and concerns so they can speak up and ask if you forget to bring something up. Additionally, it’s always great to have someone advocating for you and your symptoms if your doctor quickly dismisses a concern you have. 

A big concern as a young adult attending a doctor appointment with a parent is that your doctor may speak directly to your parent rather than speaking directly to you. If this happens, remind your doctor that you have brought your parents with you only as support and you are responsible for your own health. Also, you can confide in your parents and remind them to ask the doctor to speak directly to you, the patient. If you find your guest is taking over the conversation, remind them that you’d like them there only as emotional support and stay quiet except when specifically needed. Outlining these expectations with your guest prior to the appointment will allow for a smoother and more successful appointment to take place. 

Whether you are currently diagnosed, in a flare or just having a check-in with your GI, these tips will allow you to maintain control and get the most out of your in-person or virtual appointment. Remember, the healthcare professional is here to help YOU. Do not feel guilty for asking numerous questions, being in-depth, writing things down, and prolonging the appointment due to concerns. 

Good luck! 

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.