10 Things to Know If You're Recently Diagnosed with IBD

Newly diagnosed with IBD? I wish you knew these first.   

Growing up as a teenager, I was a perfectly healthy child. I ate regularly; I was active and a bright kid who never had any particular routine or lifestyle that I used to follow. But everything started turning upside down once I started seeing symptoms. An bigger tragedy was when I almost felt like the game had ended after being diagnosed. No! Not at all. The actual game starts only after the diagnosis. Our bodies are always changing with IBD. From one day to the next, we don’t know how we are going to feel or what is going to happen. So it is of the upmost importance to know yourself and your body first. Ignorance certainly isn’t bliss here. If you feel like IBD is ruling your life, it’s time to take back the control. Here are the 10 things which I would like to share with all those who are newly diagnosed with IBD:

1. Educate yourself: Knowledge is power. Understanding IBD leaves you better equipped and empowered to manage it. There are many patients out there without enough knowledge about their IBD. It’s our responsibility to know everything we can about our disease and also our bodies. Take the time to learn everything you can. Read and discuss as much as possible with your doctors. 

2. Track your symptoms and triggers: Learn about your own symptoms and triggers. Many doctors suggest maintaining a food diary so that your doctor may be able to use the data you gathered to help guide your treatment plan. We can understand our daily life and limit what happens to us by doing this. 

3. Never miss your regular follow ups: After reaching my first remission, I assumed I was completely cured and had stopped my regular check-ups and follow ups with my doctor. The penalty for being so ignorant came with a cost of having the next severe flare up within the next few months which completely drained me and pulled me back to square one. IBD is a disease which needs to be managed and if you feel symptom free, you are not cured, it’s just that your medicines are working and controlling your symptoms. So it is important to have regular consultations with your doctor and monitor the functioning of your systems. 

4. Make every appointment count: Be well prepared as to what you need to discuss with your doctor before hand as most of the appointments will be limited to 10-15 minutes and you tend to lose out on discussing important stuff. You can even jot down pointers on paper before entering the doctor's cabin. 

5. Don't be afraid to ask for more information: The time slot allotted for each appointment may be limited. That doesn't mean you need to limit your queries and clarifications. Make the best of that limited time. For instance, if you’re being treated with steroids, ask for detailed information about how this medication could influence how you feel, the side effects, mood swings, weight gain, and such.

6. Know your treatment: First, know what kind of treatment the doctor has put you on. Whether it is the traditional treatment or biologics or allopathy or any other alternative therapies. Understanding your treatment can help you know what is happening to your body and analyse your recovery rate to attain symptom free life by choosing the best that suits your body as what suits others may not you and vice versa.  

7. Emotional health is equally important as your physical health: There could be days when your entire body hurts and there is nothing you can do. There could even be days when you don’t even want to move because you are so exhausted. During those days it’s not easy to control your emotions as you tend to feel more low and helpless. But you can still fight back by choosing to feel “it's OK”. Don’t let your IBD control you.

8. Coping with Stress: Stress doesn’t cause IBD, but it can sometimes make symptoms worse. Stress relief is crucial if stress provokes your flare-ups. Learning how to cope with stress and anxiety isn’t always easy. But it’s really important for us to keep stress under control. Yoga, meditation and music could be a few tools that may be helpful in this. 

9. Reach out for help when needed: IBD can be an embarrassing disease. It’s normal to feel alone sometimes. At a young age, we are taught not to discuss what happens behind a bathroom door. This can leave those of us with IBD, feeling extremely isolated and even hopeless. This can impact our self-esteem and quality of life. It's utmost important to have some go to people who understand these challenges and support us in every step of our journey. 

10. Nutrition matters: Understand how your system works and choose what goes into it rightly. When the intestine is under attack, it has a hard time absorbing nutrients. Therefore it's important for us to be aware of what we eat. Follow a low residue diet to relieve abdominal pain and diarrhea. If you have strictures, it is especially important to avoid nuts, seeds, beans and kernels. 

These are few of the things which I feel we need to keep in mind and plan our lifestyle when newly diagnosed. Knowing these pointers at the initial stages makes our lives much easier.  

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.

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.

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. 

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.

Thoughts on IBD in the Workplace

Please provide your most recent job history. Done. Proceed to the next page. Do you have a disability that you would voluntarily like to disclose? This can include autism, blindness, cerebral palsy, missing limbs, autoimmune conditions like lupus, gastrointestinal diseases like Crohn’s disease or IBS…I blinked, and stopped. What did I just read? 

In the past, I had always checked No, I don’t have a disability or history of disability. But now, as I start to look for Physician Assistant (PA) jobs, I can’t ignore the fact that I live with ulcerative colitis (UC) and flares can rear their ugly heads even when I take the best care of myself. I never had to sit and ponder this question before. Because of the way disabilities are viewed by most people, stigma swirls around it, leaving previously unaffected people like me unaware and uneducated about progress being made and the struggles still faced in the workplace. Disabilities are commonly viewed with negative connotations - several of my coworkers and other colleagues that live with chronic illness and/or disabilities have highlighted this and spoken powerfully against this negativity. Living with a disability doesn’t mean that you don’t have as much to offer. The people I’ve met through the chronic illness and disability community are some of the most resilient, creative leaders I know. We face our challenges and continue living and advocating against all that is physically or mentally against us - we have to draw incredible strength and grow up sooner and in ways that most others don’t. 

However, I still struggled with multiple emotions as I sat, mulling my thoughts, stuck on this page of a job application. I have never considered myself as a person “who has a disability.” I felt guilty - would those with disabilities think that I don’t support them since I don’t want to group myself with them, giving myself another label that’s often viewed as weak? Am I misrepresenting those who do have disabilities because my UC has been so mild and I am largely functional? I felt that I don’t belong in the “disability group”, but I also can’t deny that I have a chronic illness that can be disabling in a variety of ways. I definitely consider myself lucky and blessed, but I know that my UC can change throughout my life and potentially become more difficult to control. I struggled to work through these thoughts, but then thought about how my growth this year from being more involved with advocacy has given me tools to advocate for myself and to continue learning from this community. 

My options were: 

1. Yes, I have a disability, or have a history/record of having a disability

2. No, I don’t have a disability, or a history/record of having a disability

3. I don’t wish to answer

What should I choose? It had to be either #1 or #3. I couldn’t lie - I was more afraid that it would not go over well if I did get the job and had to bring up my UC later to my employer. But then, if I marked “yes”, could that jeopardize the chances of me getting interviewed or getting a job? I’ve heard awful stories about those who hid their disability from their employer because they knew it would affect them being hired or even interviewed. Luckily, I was working with another healthcare provider who had been diagnosed with lupus over the past year and was also learning how to navigate her chronic illness in the work environment. I asked her what she thought and we ended up having a candid conversation - I realized that if marking “yes” caused me to not get an interview or a job, then that job wouldn’t have been supportive enough for me anyway. Perhaps this is my stubborn streak coming through, but I hope that working in the medical field will hopefully make potential employers more understanding. However, I know that the stigma that encircles chronic illness and disability still permeates the workplace, and this fact will stay on my mind throughout my job search. 

In the end, I did mark “yes.” It is more important to me to have the chance to advocate for myself and be supported rather than hiding my diagnosis out of potential embarrassment or fear of how I would be treated because of it. Maybe this will backfire, but by being up front about my UC, I’ll feel more comfortable in my workplace. I hope that I’ll be supported enough to communicate any issues I’m having or if I do end up needing some sort of accommodation in the future. I’m very excited about applying for jobs and starting this new chapter in my life and career as a PA, but I still have much to learn about disability in the workplace. I hope by learning to navigate these waters, I can help others who may be in the same situation - questioning if they fall into the disability category or not, wondering how they should approach disclosing (or not disclosing) their condition to their employer. Since the US just hit the 30th anniversary of the Americans with Disabilities Act, I also plan to continue to educate myself and learn more about the disability community in conjunction with chronic illness. We should never have to choose between our career and our health, and I hope I can join many others who are working to make this a reality for all who are affected by chronic illness or disability. 

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.

Why Me? Why Advocacy?

By Rachael Whittemore

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Reading the inspiring stories written by my co-fellows and having conversations about what it means to for each of us to be IBD advocates for young people prompted me to consider the different paths that led us to our roles in advocacy. Each of us have been through times of uncertainty, emotional and physical pain, bowel preps, needle sticks, treatments and more to hopefully get us to remission and the promise of life similar to what we had before we were diagnosed. We have different interests, different educational backgrounds, come from different cultures…maybe we’re even from different countries or different areas of the same country. I know my diagnosis story and IBD journey is different from theirs, and that’s ok, but above all else, we share a bond of navigating life as young people with chronic illness.

By this point, you might be wondering - why advocacy? Before I can answer that question, I have another admission: as much as I felt that I was strong and capable and felt like I took everything in stride, I was angry at the world and at my body when I received my diagnosis (I’m sure many of you can relate!). Even though I have an immediate family member with ulcerative colitis, it felt like everything I knew about the disease went out the window once my diagnosis became a permanent part of my medical record. I took care of myself, was always active, ate healthfully, and yet I still ended up with IBD. I felt like my body had broken up with me. Feelings of shame, exhaustion, and physical disconnection came to color those first few months of living with ulcerative colitis, as I realized I would have to figure out how to navigate something that seemed entirely outside of my control.

I won’t sugar coat things – it really did take a while for me to feel like I had a grasp on what my body was experiencing, and the various things I needed to process that, both emotionally and physically. But in time, with the support of family and close friends (and meds and diet changes), I allowed myself to process my diagnosis and my own lived experience, and as a result, I slowly found ways to get my symptoms under control. Still, one question lingered: what to do next? As much as I was frustrated, I thought about how it’s hard to talk about IBD, often viewed as a “bathroom disease,” with others.  It seemed like it would never be ok for me to openly discuss IBD and I found myself struggling to figure out how to approach the various aspects of my life that were inevitably impacted by it - from social situations to work requirements. At that time, I was working in a medical office to get experience before going to Physician Assistant (PA) school. To me, there was little clarity among the general public about what IBD was, and a lack of resources for those affected. I wanted to find some way to make a difference, even if only at a small level. This is how IBD and patient advocacy suddenly took on a whole new meaning for me.

“Take a deep breath. You can take that next step…”

I did some Google searching and got involved with the Carolina’s Crohn’s and Colitis Foundation (CCF) and got to know others with IBD. I worked on our local planning committee, attended our Take Steps walk to raise awareness and research funding and, while there, noticed how many young people were walking there as patients. My overlapping time working with CCF and learning how to manage my ulcerative colitis shaped my passion for patient advocacy and education. As a future medical provider (graduation coming up in December!), being a patient advocate was especially important to me since I’d spent extra time in my own patient shoes. This has continued as I became involved with CCYAN and as I started my final clinical rotations for PA school this year.

It may seem like my path to IBD advocacy was clearer cut since I’m in the medical field. While I believe my occupation certainly gives me additional perspective, it was really the weight and frustration I experienced as a patient diagnosed with ulcerative colitis that inspired me to take something negative and use it to positively impact others. For some of you, it might take some time to come to terms with your diagnosis or even recover from being diagnosed in the first place. You might have to recoup from surgery, get used to your infusion schedule, or use more courage than you ever anticipated to get past the ongoing medical visits and unpleasant exams we go through as part of our treatment process.

At the end of the day, even if you already feel ready and able to “do something,” give yourself time to reach a healthy place - physically and mentally. From there, think about your hobbies, passions, and the resources you wish you’d had when you were learning to navigate your own IBD journey. Who knows, you might just find your own path to advocacy. Keep in mind, the word “advocacy” itself might seem intimidating, but there’s no need to ascribe undue weight to it. There are so many things, both large and small, that can have an enormous impact on others. It doesn’t matter if it’s starting an IBD group at your school or a blog about your experience. Remember, the internet can be a beautiful thing and there are many ways to share your story and have it heard and supported by people who can both empathize with and learn from your experiences, even if they’re thousands of miles away.

Take a deep breath. You can take that next step – whether it’s learning how to share some of the uncomfortable parts of your story with your friends or beginning to forge your own path as an IBD advocate. Like many of our fellows have said before, this disease is part of you, but it doesn’t have to define you. Even something as small as sharing the #IBDvisible infographic during Crohn’s and Colitis Awareness Week in December can be a great first step to give others insight into your journey and create a space for dialogue where there was none before. I’ve only lived with ulcerative colitis for four years, but in that time I’ve made peace with my “body breakup,” and I’ve learned to be thankful for all of the amazing things I’m still able to do with this body as someone who is so much more than a diagnosis. And, as more time has passed, I’ve gone from the perspective of “why me?” to “why not? Why not make advocacy a part of my IBD journey?” I hope you’ll find that, in time, you can, too.

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Inflammatory Bowel Disease and Disability: What does it mean for me?

By Erin Ard

disability

[dis - uh - bil - i - tee]

lack of adequate power, strength, or physical or mental ability; incapacity;

a physical or mental handicap, especially one that prevents a person from living a full, normal life or from holding a gainful job;

anything that disables or puts one at a disadvantage.

Who knew that having Crohn’s disease or Ulcerative Colitis is actually covered as a disability? I sure didn't, up until a few years ago. I ended up doing some research out of curiosity to understand the relationship between "having inflammatory bowel disease" and "having a disability." By 9pm last night, I was pretty deep in the literature and found myself on the Social Security website. Then I read impairments.. Digestive System… inflammatory bowel disease… Hey! That's me!

But what does it mean to have a disability, even an invisible one? Let me dip my foot into the controversial pool for a bit here. Even though it is covered under Federal law, in my opinion, thinking of yourself with a disability is somewhat subjective. This is easy for the girl in remission to say, I know, but hear me out. We determine these labels (intellectual disability, ADHD, cerebral palsy, IBD) to help programs or governmental funding sources know who to serve. But if you ask someone with an intellectual disability whether they feel disabled, what do you think they will tell you? I learned recently that the ever-evolving language around disabilities isn't the bees-knees in forwarding equity and understanding in this community. Many individuals just want to be called by their first name, not by a label, no matter how inclusive the language might become. Thank you for coming to my TED Talk. *Takes foot out of controversial pool*

In this post I will investigate what it means to have a disability, what it means to have Crohn's disease or Ulcerative Colitis, and map out my road to understanding on how they overlap.

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A basic definition of disability is "a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person's ability to engage in certain tasks or actions or participate in typical daily activities and interactions." Seemingly just big words, the coverage of this definition is forcibly broad and doesn't give much description of how it looks for someone with IBD. But, when you compare this definition to living with the symptoms of active IBD it starts to make sense. Coping with the symptoms of a flare-up can be extremely debilitating. It affects your body so harshly that it impairs your ability to perform basic daily functions, such as going to work, making dinner, picking up your child, or simply walking around your house.

Let's focus on IBD as a disability. Because Crohn's and Colitis are both oscillating diseases (meaning you can go from healthily in remission to active disease, and back again) this can get complicated. It's like saying you are a vegan one day and eating a cheeseburger the next. One day you have a label and the next you forget about it. In the context of IBD, you have a disability. And the next day you still have a disability but it doesn't disable you. Like I said, complicated.

Now you are probably thinking, "Alright Erin, I understand that IBD is a disability. What does this mean for me?" And I would counter with, "What do you want it to mean?" If you feel IBD is setting you back behind your peers, you should seek whatever help you need. There are a lot of programs established just for that reason! Do you need emotional support? Family counseling? Nutrition counseling? Long-term disability in the workplace? Whatever could be improved, reach out and find what works for your lifestyle. To illustrate, up until a few years ago, I realized that I couldn’t do it all by myself. It never occurred to me that reaching out for help was an option and I was being stubborn. I was so comfortable with where I was. All I needed to do was try a little harder… To my dismay, this strategy to face my own challenges didn’t work out so well. I still had trouble sitting through an exam and felt hopeless about my situation. It was this final breaking point that I saw the value of seeking outside help. I sought help from my school's disability resource center and was assigned an Access Consultant, who would back me up whenever I needed accommodations in the classroom. Even though my disease is in remission, there is always an unknown for what could happen, so I still use these accommodations as a resource.

It's still confusing because I definitely don't feel like I have a disability. This made me reluctant to seek help from the  disability resource center even though I knew I would have benefited. I felt dirty signing up for accommodations, like I was taking opportunity away from someone else, or that someone on the receiving end of my application would laugh and tell me to move on. And "I mean I don't really need them, do I? I can just figure it out on my own. It's no big deal.."

It is a big deal.

The word "disability" has it's place in the real-world, but it's ultimately up to you how to live by this label. Will it hold you back? Do you identify by it? Whatever the answer is, make it your own.

What do you think about the word disability? Or how has it’s classification as a disability shaped your ability to cope with the disease?

A Five Step Plan to Prepare for the Stress of School

By Erin Ard

August has always been my favorite month of the year. The word itself feels warm and seems so full of light. Summer is winding down, many of us have been able to do things we never have time for during the school year. We've been able to spend loads of time with friends or family, gone on vacation to somewhere new and exciting, explored some new DIY projects, or tackled a task from our ever stagnant To-Do list. We might even be exhausted from all the fun and relaxing times we've had that the thought of summer ending, is naturally bittersweet. August is our last month to ourselves. When August 31st comes around, classes are just around the corner. Now, I don’t mean to scare or worry you that you are running out of time. You still have plenty of time to relax and prepare. (But tick tock..)

This September will mark my own re-entrance to school after taking a year off. In May of last year, I graduated with my Bachelors and will be going back as a re-entry student to study DIETETICS! I am so excited you guys, you don't even know! Even though it's only been 15 months since I was in college, I feel like the mom who rediscovers herself and goes back to school after x number of years devoted to others. But this is MY time to shine! My heart is so full of excitement and intrigue for the new topics I'll be learning about and the career path I am headed towards. I have had 15 months to decompress from all those days spent studying, non-stop, on end and will be reattending with renewed energy and outlook. Because I know how stressful college life can be and the added stress of taking care of a chronic illness, I want to share some of my own insight on how to prepare for another school year.

After having a few rough semesters and thinking about this new year, I decided to do some research on how to prepare yourself mentally, emotionally, and physically. Many of the tips I found were in reference to another stressful life event, but they still hold potential for alleviating the stress experienced in school. Stress is stress, right? And when you have an inflammatory disease, a part of keeping your disease in check is taking the right precautions around stress management. So whether you are ready to get a move on or still trying to deny the fact that summer is ending, here is a five step plan to get you started.

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Step 1

Use this last month of summer to really get to know yourself, on every level.

Try to understand how you deal with stress by thinking about your past. Think back to a time when you were dealing with a lot of stress, maybe even in the midst of a flare-up, and ask yourself: How do I tend to perceive about the situation? Do I react to the stress or work through it? Are my thought tendencies self-deprecating or more self-righteous and determined? How did I feel physically, emotionally, and mentally? What was I missing? What could I have done differently?

Try this writing exercise! Like you would write a story, write down what was happening during a time you were being pushed to your limits. Bullet-point every obstacle and bold everything you tried to overcome the situation, even the failed attempts. Then, like how a writer outlines a story-line, write out how you would resolve the story. Include who and what from your life you would need and when you would use them. Keep this as a guide or for inspiration!

Step 2

Plan ahead, for EVERYTHING and keep yourself accountable.

It can be helpful to set up a plan for yourself ahead of time. Whatever makes yourself more productive, make a promise to DO THOSE THINGS! Get tasks done early when you are feeling well and full of energy, so you can rest when you are not. Prioritize what is most important in your life. Stick to a routine or try new things. Think about how much you need to do to be successful and what kind of effort that will take. Then start to build up your plan around these thoughts. Being accountable for yourself and the work you must accomplish ahead of time will save you in the long run.

Try this writing exercise! Make a promise to yourself for the new school year. Write down a few things you want to strive for, big or small. Then display it somewhere you will see every now and then as a nice reminder. This will keep you centered and focused on what you want to achieve and how you will do it. Here are some examples: "I promise to make good decisions for my health and well-being. I promise to make my bed each morning. I promise to do what I can, when I can, and not judge myself when I cannot."

Step 3

Be the responsible person you and your body deserve!

Make responsible decisions when it comes to food choices, workload, and managing stress. A part of developing a successful plan is sticking to it! If you know about your own unhealthy habits that can impact your ability to manage stress, then take steps to reroute them. Start with replacing bad habits with positive ones.

Step 4

Have a de-stress plan when life starts to get tough.

By having something set in motion ahead of time, you can comfort yourself knowing you've prepared for this! So whip out your de-stress kit and get to it! Here are some ideas to get you started:

• If you feel yourself getting anxious, stop for a moment. Practice deep breathing and positive inward thoughts or commit some time to a guided meditation. You may feel more calm and refreshed afterwards.

• Set up a routine to decompress after a long week (take a warm bath with a glass of wine, settle in with your favorite book with a cup of delicious tea, or just take a nap - but use this last one sparingly)

• If you struggle with eating healthy, staying away from trigger foods, or staying on a grocery budget then try your hand at food prep. Taking your Sunday afternoon just for this task can be relaxing in itself and can yield some great benefits. Say goodbye to wondering what your next meal will be and ordering too much take-out!

• Write a letter to yourself to read when the going gets tough. I did this in the depths of a my lowest moment and it allowed me to pull myself out of an emotional rut to refocus on happiness and success.

Step 5

Pick yourself up when you fall.

If you fail, a normal part of life, then you will need to brush yourself off and try again. Don't blame yourself, don't blame your shortcomings on your Crohn's or Colitis, and don't project your failures onto the universe. These tendencies will only allow you to harbor negative feelings about yourself or your past. Practice accepting things as they are and moving on with a more determined attitude. Find out where you might have went wrong and correct any bad behaviors that may have caused you to fail. Are your Netflix binge habits infringing on your study time? I know mine have before. Learning is all about finding what works for you and readjusting. This includes finding what works well in your own study habits. Try out some new ones if the old ones get stale.

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Whatever your plan ends up being, make sure that it is true to YOU! Incorporate everything you know can work and don't waste your time on what doesn't. I promise to

What strategies help YOU manage stress?

Advocating for Your Illness in the Workplace

A word with health advocate, Samantha Reid

The CCYAN fellows recently had a chat with IBD blogger and health advocate, Samantha Reid, to discuss her take on managing IBD in the workplace.

CCYAN Fellows Leah Clark, Erin Ard, and CCYAN founder,
Sneha Dave, video-chatting with Samantha Reid

In February of 2010, Reid received a surprise that she never anticipated for during her birthday celebration. Three days after she turned 18, she was diagnosed with Crohn’s disease and began her adult life with questions, concerns, and ultimately, an ambition to help others with her disease.

Reid has had her fair share of experiences navigating her Crohn’s disease both in college and work. Majoring in english in college and working as a communications director at her previous job, Reid gained a solid foundation in writing, communication, and outreach. Now, her job allows her to focus on health and advocacy in the professional environment. Currently a digital director for the nonprofit organization, Patients for Affordable Drugs, she strives to change policy to lower the price of prescription drugs. Patients for Affordable Drugs is a patient organization, and Reid actually started there as a patient, so her peers understood her illness and created a safe environment for her to work in. Reid understands, however, how fortunate she is to be working in a flexible environment that meets her accommodations.

“I realize the fact that I’m even able to disclose my disability to my boss and coworkers is a privilege, and not everyone has that ability.”

Reid went on to encourage those with IBD to “play it by ear” and do what one feels comfortable with when discussing their health with their boss and coworkers. Disclosure can not only be an important step in establishing a safe work environment, but it can also be used as a learning opportunity for your peers. “It allows me to be more open and it allows my supervisors to be more open as well; it creates a space for dialogue,'“ Reid explains.

Along with being the digital director, Reid also has a successful blog, Sicker Than Your Average, that she frequently shares experiences with IBD on. She explains how her presence on social media has helped her with IBD advocacy with her work. “For all of my adult working life, most of my coworkers have known about my illness by default. Whether they know because they follow me on social media and see my advocacy work or they know because I’ve had to postpone a meeting because I was sick, most of them know.” Reid expressed how important communication upfront can be when tackling IBD at work. Giving your boss and coworkers a heads-up when sensing a flare or preparing for many doctors appointments can not only give you a sense of ease with planning, but also can inform your peers about the severity on an issue. With invisible illnesses, it can be hard to truly express how important your health is when others can’t see your pain.

“When it comes to asking for accommodations, communication is key. Any workplace that would be retaliatory about me needing accommodations is NOT somewhere I would want to work.”

Sometimes IBD can feel as though it is getting in the way of performing your best at work.
It’s important to remember to do what feels comfortable to you and prioritize your health.

Communication is not only good for planning for the future, but it is good for setting up workplace accommodations. Accommodations are there to alleviate any hardships put in place because of your illness. These can include having your office desk closer to a bathroom or having options to work from home. “In my current position, I have an agreement with my boss that I can work from home every Friday. Because of my Crohn’s, I struggle with extreme fatigue, so even having one day a week where I don’t have to get dressed up and commute saves so much in terms of my energy levels,” Reid explains. She said it makes an enormous difference to her, and she feels valued at a workplace that can accommodate to her needs.

One topic that Reid discussed when advocating for yourself in the workplace is the drive to, in a sense, redeem yourself to your coworkers when you are feeling healthy. It’s understandable to feel pressure at work to perform well, especially when you feel as though you are slacking because of your health. Missing work because of appointments, hospitalizations, and just sick days in general can cause one to feel inadequate in their job performance.

“For me, when I am feeling well, I probably overcompensate at work to prove myself. No one asks that of me, but I know it’s important to gain that goodwill while I can so that when I fall into a flare, people are more understanding.”

It’s important to realize that it is okay to take time for yourself to get better. For many IBD patients, health is a number one priority, and people will be understanding. Showing your boss and your coworkers, when you are healthy, that you can do your job right and well is completely fine.

With all the advice Samantha Reid gave the CCYAN Fellows, it’s clear that she is a remarkable IBD advocate and presence in the community. Her constant dedication to IBD awareness is shown through her work and her attitude towards life. Her insight on what to do and what not to do when it comes to advocating for your illness is the workplace comes from years of experience. Making efforts to communicate effectively with your boss and peers, setting up boundaries and accommodations to meet your health needs, and putting your health first when necessary are all great ways to help those with IBD navigate their work with ease. We at CCYAN hope those in need can use this advice and pursue their career goals without feeling held back by their diseases.

The CCYAN Fellows would once again like to thank Samantha Reid for taking the time to discuss this topic, and they look forward to seeing more of what she does in the future with health advocacy.

Samantha reid

Samantha Reid is an exceptional health advocate and role model in the IBD community. Her insight on advocating for yourself in the workplace not only those with IBD great advice, but also sheds light to important issues on workplace accommodations for all. For more information on Samantha Reid and places to connect with her, check out her social media and other platforms

Blog | Instagram | Twitter

IBD Diets: Gluten Free for Crohn's and Colitis

By Leah Clark

Because of the popularity of Hollywood fad diets, the term 'gluten-free' has become more and more popular over the past decade. While not necessarily intending to do so, this trend actually brought great change to individuals suffering from celiac disease, non-celiac gluten sensitivity, and inflammatory bowel diseases. With new food products coming to market and more menu items coming to restaurants, it has provided a new way for people that cannot eat gluten to experience food. As someone that was diagnosed with both celiac disease and #Crohn's disease ten years ago, I can confidently say I know my way around a nutrition label. That being said, not everyone that is on a gluten free diet, or that is planning on starting one, knows what to do. When discussing your treatment plans for your IBD with your doctor, discussing diet changes should not be forgotten. So, is going gluten free right for you?

Bacon, eggs, potatoes...who says living a gluten free lifestyle means giving up your favorite breakfast foods!

What is gluten?

With all these terms of gluten free, gluten sensitive, wheat-free, gluten-friendly, and more, it can be confusing to know what it all means! Isn't flour gluten, or is it any grain? To start with the basics of a gluten free diet, one has to know what to look for. Gluten is the proteins found in wheat, rye, and barley. So when on a gluten free diet, wheat, rye, and barely are the foods to avoid.

How to read labels

Okay, so know that I know what to avoid, what are the necessary steps to ensure that I don't eat the wrong foods? Check labels on everything. Even if you think something may be gluten free, it never hurts to read the nutrition labels. Certain foods don't have labels, such as fruits and vegetables; however, these foods do not consist of any other ingredients other than what they are called-apples, carrots, oranges, etc. Foods that are made with other ingredients, such as cereal, pasta, and crackers, are foods that need to be checked. Luckily, most companies are good about food labeling, so boxes will often say "Gluten Free" or "Contains: milk, soy, and wheat."

However, sometimes there are tricky labels that you need to look out for. For example, the cereal Rice Krispies is not #glutenfree. The ingredients include rice, sugar, salt, malt flavor, and vitamins and minerals. The key word here is malt. Although the other ingredients are okay, the malt flavor is not. Malt is a tricky word because it is not wheat, rye, or barely; however, malt is a derivative from barley. Therefore, Rice Krispies are not gluten free. Words like malt extract, malt flavoring, barley malt, wheat-germ, and non-gluten free oats, are words to look out for.

What foods can I eat?

A good rule of thumb is to stick to foods that are labeled gluten free, or are"natural" foods. By natural, I mean foods that are not made with large amounts of ingredients. A good starting gluten free grocery

list could include:

• Fruit-apples, bananas, kiwi, oranges, grapes, strawberries, raspberries, blueberries, plums

• Vegetables-carrots, corn, green beans, lettuce, spinach, broccoli, radishes, celery, zucchini

• Milk-can be almond, dairy, soy, cashew

• Protein-lean meats, chicken, eggs

• Dairy products-cheese, gluten free yogurt, butter, cottage cheese

• Grains-white or brown rice, gluten free oatmeal, gluten free breads and pastas

Gluten free pizza? Yes please! Restaurants have gotten better at properly preparing gluten free dishes, including delicious pizza, to make it easier for people to enjoying going out to eat.

Gluten free diet can not only be good for your gut, but also for other parts of your body because of how healthy a gluten free diet can be. Many of the foods listed are healthy in their nature, like lean meats, fruits, and vegetables. However, just because something says "gluten free," does not mean it is part of a healthy diet. Sure, chocolate is gluten free, but if all you ate was chocolate, would that be the best way to go on a gluten free diet? Probably not.

But I thought gluten free foods always tasted bad?

A common misconception about gluten free food is that it tastes gross. While yes, there are some bad gluten free food products out there, this is no different than there being bad gluten food. It all depends on your preferences and experimenting with different brands. Making home-made gluten free brownies is not as simple as using a Pillsbury box recipe of 'normal' brownies (although, there are some Pillsbury gluten free baking products that taste great). The point is to try new brands and baking techniques that work for you. I've spent the last ten years of my life finding my favorite brands of pastas, crackers, and bread, and I can honestly tell you, it wasn't I traveled to an entirely different country and tried their gluten free bread that I found my favorite. Gluten free food can taste just as good, if not better, than the food you're used to! It just takes some time and preparation.

How do I know if gluten free is right for me?

Honestly, it all depends on what you and your doctor think is best for you. I had to go gluten free because I was diagnosed with a disease that literally required me to. Yet, I know several people with Crohn's or colitis that have gluten free diets that do not also have celiac disease. In short, if eating certain foods make you feel bad, do not eat those foods! There are other foods I avoid even though they are gluten free, such as popcorn and caffeinated sodas, because I know they upset me. It truly depends on each person and if it is going to help with your treatment for IBD.

Comfort, Charisma, and Confidence: 3 Tips to Make Dating with IBD Work For You

By Erin Ard

Recently, I've been learning about the many strong women who have made a difference in this world. Those who have lead movements, progressed research, fought their adversity, spoke their truth, and lived their life with passion. In honor of #WomensHistoryMonth, I've been trying to find what this means for me. A single, white, cisgender woman with a voice, a mild physical disability, and a latent identity. What do I have to say?

I've been doing a lot of reflecting lately about what I can offer the #IBD community. I've been trying to think of what tips and/or tricks I live by that could make your day to day life easier. I explored my reflections but I sadly couldn't come up with many. Then I was kindly reminded of something. Though I have lived this fight with Crohn's for some time, I am still amidst my own journey. I might not have the answers because I haven't resided long enough in this level of comfort, which seems to grow every day. I am still figuring out how to catch up from the emotional setbacks Crohn's disease has caused for me and it's okay if you are too. Welcome friend! We can figure this out together.

In truth, I have had a lot of interesting experiences I could speak to, but today I will settle on one I've learned a lot about lately. #Dating.

While this topic might not be central to the life of an IBD patient, it has the potential to really impact our self-esteem and mess with our emotions. I can't say I have extensive experience with dating or have ever made it to the "sweet spot" (when you get past the "What are we?" stage and finally make it official). However, since I've been out of the game I've been using time to learn. I've subscribed to a few newsletters and watched way to many "How To" videos! How to get the man of your dreams, How to not push him away, How to get him back, How to.. How to.. It sounds silly, but it has been SO eye-opening! What was a topic I had zero input in, I now have a LOT to say about.

It's a little humorous how much we struggle over the little things in dating that should be easy. For instance, figuring out how to say the right things or act a certain way to keep someone's interest. I've realized the less we worry about these trivial things, the more successful we could be. You might be thinking, worrying "less" is easier said than done, but shouldn't being our natural selves rather than putting on a façade be the easy part?

This is just one of the many revelations I've had recently about how intuitive the dating world is and how easy we can make it work in our favor. As a woman with Crohn's disease I've had other challenges to contemplate, like how to talk about having a chronic disease to someone I barely know and how to phrase positively so I don't look like damaged goods. Because in reality, we have all learned tremendous strength with having IBD so there is no need for anyone to think this about us.

IBD is a multi-facetted disease that touches many parts of our life. It impairs some of our basic every day functioning, like being able to sit for extended periods of time without needing to use the bathroom. Personally, Crohn's disease has transformed how I go about my day. I've had to make necessary changes for my health, learn to accept my limitations as they are, or find the motivation and means to push past them.

Well, here it is my little ladybugs! Here is what I have learned about dating AND dating with IBD.

First, open up about your IBD when you feel comfortable.

Opening up about your life with IBD can get pretty personal and you might not want to get too personal too quickly. If your date asks you questions about having IBD, be honest, but don't feel pressured to divulge all your deep emotional baggage. Ultimately, deciding when you should talk about life with IBD is up to your comfort level. If you are comfortable with someone and trust their compassion, then feel free! Getting close to someone emotionally is all about balancing each other's efforts. If they give a little, you give a little and vice versa.

Opening up about your life with IBD is different for everyone. Some people are entirely comfortable with airing out their experiences, while others may be hesitant. Some people dwell on the negative, while others would rather focus on positive. It may be easier for others, but we don't need to criticize ourselves for how behind we may feel. Rather we should accept where we are, honor how far we've come, and progress at our own pace.

Second, cancelling a date doesn't have to be a headache if you are charismatic.

Dating is stressful enough and when you add IBD into the mix it can get complicated.

Imagine this: You met someone who seems perfect! They are family-oriented, charming, sensitive, and cute. You are really excited about getting to know them so you set up a date. You talked them into touring the art museum downtown and getting ice cream afterwards. But, you wake up the morning of feeling a little off. Maybe that handful of popcorn at the movies last night wasn't the best idea.. You forgot how much popcorn can set you back and you've been reaping the consequences all morning. So, what do you do?

When you have IBD, situations like this can happen often. This has happened to me quite a few times since I always forget how much my body loathes popcorn. Although my dates were never this adorable!

So, say your date doesn't understand your situation and you aren't comfortable with sharing that part of you yet. If the person is as great as you make them out to be, then they will understand if you need to cancel. Even so, there are ways to cancel a date that won't reflect poorly on your interest. Here is my personal tip, whether you decide to tell them the truth minus the details (you aren't feeling well) or make up a believable excuse (you have an assignment to finish), be cute about it! Tell them you won't be able to do tonight and add something playful, like Hey, I don't think I can meet tonight anymore. Any way we can reschedule for Thursday? I promise I'll make it up to you ;)

This way you still convey interest, make the cancellation pleasant, and give them something to look forward to - seeing your cute self :) If you have to cancel many times, it probably won't continue to work in your favor. You have to figure out what you want to tell the person. If they don't respect that some actions are difficult for you, then they probably weren't the one for you anyways. You deserve someone AS amazing and understanding as you.

Third, it's all about being confident.

If you think about it, what kind of personalities are YOU attracted to? Those who seek out gratification for their insecurities or individuals who are comfortable with themselves and radiate positivity?

Here is my personal tip on getting started with confidence. Practice talking about how IBD affects you. Have this conversation with yourself, open up, be honest and focus on what value it has brought to your life. For me, having Crohn's has brought me closer to my family and friends, it has taught me strength and perseverance, and has given me a purpose. Since being diagnosed I have focused on my overall health and sought out knowledge to help others be healthy and embrace their whole self.

The notion of confidence became more inviting for me once I realized it can be learned. Being confident is an attitude and it is relatively easy to implement if you are proactive in changing your mindset.

♥

I hope this article can help shift your perspective of dating with IBD to a positive headspace. If you take one thing away from this, I want you to know the key to successful dating is knowing and appreciating yourself. Once you learn how to do this, all of the tedious details we tend to wrap ourselves in won't seem as unmanageable. I can't say enough about how the simple act of being compassionate with myself has helped me grow. I hope to become as strong as the women I've been learning about this month and to pass this strength to all of you.

Each of us is strong in our own way. IBD challenges us to be even stronger.

With love,

Erin

7 Tips For Easing Travel Anxiety

By Erin Dunne

The weather is getting warmer, school is coming to a close and the time for traveling is here! I have been lucky to travel with my family on many road trips and am starting to go off on my own as I get older. I love traveling no matter where I go or who I am with, but I still get apprehensive when planning. Will I be able to eat out? Is there a grocery store nearby? Do I have to take my medication while I'm away? What if I get sick?

Going to new places and being confined in a single mean of transportation can be very stressful and bring out anxiety in people with #IBD. I don't know about you, but being bloated, in pain or uncomfortable is not precisely how I'd like to spend my trip. It's unpleasant enough at home but is even more so when away. Although I have a lot more traveling ahead of me, I have already learned through the years ways to ease my anxiety and make traveling as smooth as possible.

My top IBD friendly traveling tips are:

1. Set up a game plan with your travel buddies:

It's always best to make sure that you and your travel partners are on the same page and at least have a general idea of what you would like to get out of the trip. As someone with gut issues, it's important to clarify any needs that may need to be met while you're away- special diet, bathroom accommodations, etc. Explaining your concerns will not only help your partners understand better but will also put you at ease. By constructing a game plan, you'll have a better idea of what you'll need to prepare for- whether that means packing your own food for certain meals or staying somewhere with multiple bathrooms and a fridge.

2. Research restaurants you can go to:

I'm a BIG foodie so finding the best local places to eat when traveling is extremely important to me. I like to try to stay away from chain restaurants as much as I can when I'm away so I can experience more new places on my trip. By being prepared with gut-friendly places to visit, when the question of "where should we go to dinner?" comes up, you won't have to frantically search for restaurants on your phone while others wait. If you can't find a restaurant menu online, don't hesitate to call and ask if they can accommodate your needs. From experience, most places will be more than happy to work with you to create something you are comfortable having!

3. Stay somewhere with a kitchen:

Eating out for every meal can be expensive, impractical, and not always easy on the gut. With that being said, staying at a place that has a kitchen/ kitchenette can be very helpful and makes it easier to create your own meals. Being able to cook takes out the fear of getting a restaurant induced stomach ache and gives you some control as to what's being put in your body. Before traveling, make sure to search for any nearby grocery stores, so you can pick up some staples and save time.

4. Bring supplements:

Even if you think you can go a few days without supplements, bring them if they help your gut feel better! In my opinion, it's best to be over prepared than under prepared. Making sure you have your medicine and supplements (if you take any) can be stressful. If you're like me, even if you double and triple check that you have packed everything there is still a fear in the back of your mind that you forgot something. Put your medicine and supplements in a place that is both easy to remember and is accessible. I typically put mine in a pill organizer in my carry-on.

5. Pack snacks/meals:

If you have been in an airport before, you probably know that many of the items are often overpriced ($5 for a bag of trail mix that's mostly air? No, thank you). I always come prepared because it doesn't matter if I am stuck on a long car ride, a plane, or just walking around town- when hunger strikes, I need food asap. By packing some of your favorite, healthy snacks, this takes out the chance of settling for something that might upset your stomach. Some of my favorites are fresh fruit, homemade nut mix, and Larabars!

6. Pack your go-to remedies:

Bring some of your most effective remedies to help with any discomfort that may occur while you're away. Have a reusable water bottle on hand to make sure you are staying hydrated (and maintaining the environment). Some of my go-to's include: Bone Broth, Pedialyte packets, Apple Cider Vinegar, and essential oils. Having these items with me when traveling helps me feel at ease because I know that while I'm at home, they help make me feel better and if I am away, they will do the same.

7. Incorporate parts of your regular routine:

Most trips can follow a jam-packed itinerary that can leave you feeling exhausted by the end of the night and wishing for more sleep the next morning. While this may work for some people, others may function better with a flexible itinerary. Even if away, sticking to part of your daily routine can keep you more grounded and feel more comfortable when thrown into the unfamiliar. My morning and evening routines are very set in stone and help me unwind, so I always make sure to implement some of the same activities into my travels. At home, my routines are much more elaborate, but I make sure to take the simple, yet impactful things with me wherever I go. In the morning, I meditate and drink warm lemon water with Apple Cider Vinegar. Before bed, I drink a cup of tea and read or listen to an audio-book.

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Ultimately, recognizing that traveling is never going to be perfect is the biggest help. Life is unpredictable and the best of us get a headache or stomach aches at what seems like the most inconvenient of times. I know it can feel as though you are high maintenance and you may also feel bad for "inconveniencing" your travel partners, but this is very far from the truth. Know that your health comes first and you deserve to enjoy yourself just as much as anyone else- you just may have to take a few extra steps to make this happen! These steps are necessary, and over time you will become more comfortable with whipping out your pre-packaged meal while your friends have take out. A happy gut leads to a happy traveler!

Stay Lovely,

Erin

In the Name of Love: The Importance of Having a Support System

By Erin Dunne

Stomach cramps, constipation, diarrhea, fatigue, low FODMAP diet, gluten-free diet, dairy-free diet, little fat, no sugar, no caffeine, MRIs, CT scans, GI exams, Prednisone, Remicade… the list goes on and on. If you have #IBD, the chances of you encountering at least one of these things at some point in your life is very high. Some individuals have what can be seen as "easier" cases; they are put on a single treatment plan that keeps their symptoms at bay and may even lead to clinical remission. There are others that may jump from treatment plan to treatment plan without seeming to find one that ultimately works for them. Each journey of somebody with IBD is unique, and while we can empathize with others and find comfort in similarities we may share, it is easy to feel alone in this adventure. Despite frustrations we may feel at any given point, it is essential to establish strong relationships to lean into and lift us — relationships with friends, family, professors, and ourselves.

Through love, even the impossible seems practical, and with a disease that is so unpredictable, this rationale is comforting.

I have had Crohn's Disease for thirteen years now, and I can honestly say that through the years, most of my strength has been obtained through my relationships with others. For many years, I was one of the fortunate individuals that often did not feel as though I had an illness. I took two pills a day, was not restricted to a specific way of eating, and experienced few symptoms. Compared to my friends around me, the only difference between us was that I had to take medicine at certain times of the day and had monthly doctors' appointments. Despite these minor differences, I still felt isolated from others my age. In my world, I was the only person I knew with IBD and had no idea of the various severities of the same condition. It wasn't until I attended Camp Oasis- Michigan that my eyes were finally opened, and I no longer felt alone in this journey.

My third summer at Camp Oasis. Can you spot me and CCYAN Admin, Sneha?

Throughout my time at camp, I met so many people with different stories, and I was fascinated by every one of them. Not only was it wonderful to be able to relate with others my age but also to idolize the older campers and counselors for how strong they were. I returned to camp for four summers and connected with so many lovely individuals throughout the years that have helped shape my life; some of which I still am in contact with!

I highly recommend trying to include people that have experienced IBD into your support system because not only do you gain more love in your life, but also people that get what you're going through! If you're anything like me and don't have family members or friends that are familiar with the disease, it can be hard to share stories, concerns, even successes without feeling like they're not entirely understood. (Sorry mom for the various bowel movement updates, but thanks for listening!) Getting in contact with others can be very easy! Communities like CCYAN, CCFA, Camp Oasis, and any groups through universities, hospitals are all great places to start. While each story is different, we are far more alike than you would think.

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Although I mentioned earlier that I had considered myself lucky to have an easier time with Crohn's, the past two years have been anything but that. With being on the same medication for most of my life, it stopped being effective and could no longer support the inflammation in my system. I have been dealing with a reoccurring flare since and have gone through various forms of treatment to try to tame my symptoms. At first, I had become more aware of food intolerances, often experiencing diarrhea, severe bloating, and severe stomach cramps. Through trial and error, I have found a diet based on whole foods (vegetables, fruit, fish, poultry, nuts) makes me feel my best but I am still finding things that do not agree with my body (rip mangoes… you will be missed). I am currently taking Humira but am exploring other medication options. Even with all of the changes I have implemented to ease my symptoms, I know I can experience much better and strive to heal my body as much as possible.

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I would be lying if I said I was always hopeful during this process of finding a treatment that my body reacts best to. There have been times I have broken down due to being so frustrated with not seeing or feeling any improvement; sometimes I can feel as though I am my childhood self upon the first diagnosis, scared and alone. At my lowest times, it can be easiest to isolate myself and wallow in my self-pity, but luckily, I have learned that my support group of friends and family, although they can't relate on a personal level, are always there to listen and help to the best of their ability. Being away from home for school, I am not able to lean on my family as much as I would have in the past. Although I have always been independent, it is comforting to know that I have loved ones around that are there for me through my struggles and my successes (never underestimate the power of a hug). I have been blessed to find another form of a family at Spring Arbor through wonderful friends that I love with all of my heart. Even though we have not known each other long, it is as though I have known them a lifetime. They go through my problems alongside me, help me come up with solutions, and act as my parents when I am sick and unable to leave my dorm room.

A few weeks ago, I was experiencing terrible symptoms; I was trapped in my bathroom the majority of the weekend and did not have much of an appetite. My friends knew I was not able to walk to the Dining Commons, so they took it upon themselves to bring me bananas and easy to digest, bland foods. Another day, I had expressed frustration with not having a doctor at the moment and feeling as though my current treatment plan was not working. My friend spent her afternoon going through scholarly articles and websites to find information on healing diets, fixing nutrient imbalances, and alternative healing techniques. Other times, when we are eating out or visiting someones home, they make sure I have something I will be able to eat. To say I feel loved and fulfilled is an understatement! I cannot stress enough the importance of having a support system in your life.

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Whether you're currently dealing with IBD, mental illness, body image, etc, being able to express love for others as well as receive love from them is beneficial for your brain and your well-being! It does not matter what the size of your support system is or who is in it, as long as these individuals support and love you and are positive additions to your life. I hope while reading this you have thought of a few people that are currently in your life that help you each day, even in the littlest way. I encourage you to reach out to them and let them know how much they are appreciated! If you have interest in growing your circle or want to start one, as I have previously mentioned, there are plenty of ways to get involved and meet people from your area, different states, and even around the world. The ladies at CCYAN would love to hear your stories, connect with you and help in any way possible. Feel free to contact me with any questions, or if you simply want to talk!

Stay Lovely,

Erin