New Year's Resolutions from a Fellow Crohnie

By Erin Ard

Living a life with inflammatory bowel disease is in one word, unpredictable. For Crohn's disease, you pretty much do what you can to control the inflammation in your body by controlling your food intake and working with your gastroenterologist on what treatment methods to use. Not to mention, dealing with any other additional complications or side effects. I was diagnosed with Crohn's disease 10 years ago now and I've learned a lot about strength, resiliency, and the imperfection of the human body. Since my diagnosis, I've learned a lot about my body and my disease including how to accept all of its flaws. But because reality tells me I will deal with this disease for the rest of my life, my journey with Crohn’s is not over yet so there is still so much more to learn.

My journey with Crohn's started back in high school and honestly, I had no idea what would be in store for me. When I was finally sent to see a specialist, we would drive over an hour to my gastroenterology appointments. I started out taking mercaptopurine to suppress my immune system but quickly advanced to Remicade as a long-term treatment. On Remicade, I finally felt like myself again – at least a version of myself with additional manifestations of my Crohn's. The joint pain and short-lived fevers still persist, even today. It has been 8 years since I started on Remicade and a lot has happened over those years. I finished high school, moved away from home, and started college at the University of Wisconsin - Madison. Since starting college I've learned a lot more about myself as an individual and how Crohn's affects my life as a whole. In fact, it has changed since I was diagnosed and achieved remission the first time around.

I moved through the years mostly symptom-free. With only the rare stomach ache, but still able to maintain your daily routines. I knew precisely how my daily life would change if my disease was active. I valued the time I had thinking I could eat what I wanted without repercussion or go on a long run without my joint pain forcing me to limp the remaining distance. When your Crohn's is in remission, you have the freedom to eat delicious - maybe not so Crohn's-compliant - foods. You may even plan travel trips into your year with minimized anxiety of having an episode. I had the freedom to do all of these things! Since 2019 started, I tackled my vision board ideas by cooking more from scratch, trying out healthy recipes in my Insta Pot, and booking my first flight on a plane! Followed by several more flights to exciting new locations I hadn’t dreamed of experiencing because of the travel-anxiety instilled by my Crohn’s. For a woman in her early 20s with Crohn’s disease, I was crushing it! Then a few reality checks later, the unpredictability of IBD set in and I learned an important lesson. That no matter how far into remission you've gotten, odds are you might flare-up again in the future.

Photo by Evie Shaffer from Pexels

This sad truth is where I found myself recently. For the last few months, I've felt pretty off. I was getting more frequent belly pains, indigestion, irregular bowel movements, and my joints were starting to bother me more. I had originally attributed all of my symptoms to not eating well, which was a naïve thing to believe.. In retrospect, I had been struggling to stay in remission for the past couple of years. With the way that Remicade infusions worked over my 8 week time period, I would started getting symptoms again around week 7. That last week was a familiar struggle which included neglecting some of my responsibilities at school. I would end up skipping a class here or calling into work there - each pretty understandable given the circumstances but I still regretted having to do. About a year ago I went in for another colonoscopy (my third so far) because of these recurring symptoms and because my last one was towards the beginning of my diagnosis. The results didn't come back perfect, of course. They found some inflammation in my distal colon and the opening to my small intestine, which would explain my irregularity, stomach pain, and indigestion. I was told my gastroenterologist would be in touch to discuss what my next steps would be. After that visit, everything concerning my disease went on hold for awhile. In other words, life happened. My obligations for school and work started to take over my free time. Being the Crohnie I am, my limited will power from the fatigue would have me put the small tasks off until the following day. Meaning my health was put on a back-burner because they would always be put off until the “next day.” I was still receiving infusions every 8 weeks and conquering through my days, so I didn’t jeopardize my self-efficacy. I felt able to accomplish whatever I set my mind on. Eventually I started to wonder what my prognosis would turn into if I continued living this way. So I finally scheduled that appointment, this time with the gastroenterologist that performed my last colonoscopy.

Since I've started this fellowship with #CCYAN - the Crohn's and Colitis Young Adults Network, I've read so much about other people's experience and learned the expansive symptomology of inflammatory bowel disease in other bodies. Since the start of the year I realized how crucial it is to maintain your disease to prevent complications or necessary surgery in the future. Heading into the new year, my new outlook will be focused on achieving remission and maintaining a healthy body, any way I can. Let me share with you what my Crohn’s-related New Year’s resolutions are for 2020..

Learn to accept the unpredictable.

The first resolution I’d like to explore more is in how I think. Because Crohn’s can be so unpredictable, accepting this as a fact of the disease may help uncontrollable events feel less traumatizing. When you can learn to seek solutions or simply see the positive rather drowning in the self pity, loathing, disgust or whatever you might feel, you will feel a bit more at ease. It takes so much energy worrying about what "could" happen in the future. Like what "might" happen if you venture away from the privacy of your home and go to the movies today. Or "if" you might have the urge to go on an airplane while the bathroom is busy. Or "if" you don't make it to the toilet on time. Events like these are bound to happen and throw you for a loop if you aren't prepared. I should clarify that learning to how to accept and not worry about the future doesn't necessarily mean you shouldn't prepare for anything and everything. Because the first thing we all learn with IBD is that preparation is key to surviving any traumatic bathroom incident!

To take initiative when it comes to my well-being and body's health.

The second resolution involves how take action when Crohn’s is clearly affecting my body. My bad habits of binge-eating sugary treats or ordering high-fat take-out when I’m not feeling well starts to become routine when I don’t take responsibility for some of the fall out. I’d like to learn how to better take initiative to prevent consequences or make the most of my recovery. This means staying in close contact with my gastroenterologist about any trouble I’m having, not eating foods I know will quarantine me in the bathroom the next day, and keeping track of my symptoms, as tedious as that might be.

Recently I received not-so-great news from my gastroenterologist and it felt like my world was collapsing. After I took a calprotectin test which showed an adequate amount of inflammation, she told me that my Crohn's was flaring up again. It took me a bit to realize that what I was experiencing was actually long-lived. I had started getting symptoms months prior and it took me too long to get back on track. Something simple that could have helped me notice something sooner would have been a food log, which unfortunately, I don't have a lot of experience in carrying out. However, I do see their value and hope that this next year I can explore this path and hone in on what my exact food triggers are and how my body changes throughout the year. If you are now interested in doing the same, see this article on How to Use a Food Diary to Help Manage Crohn’s Symptoms and Flares from Everyday Health. I might not go as far as weighing my food, but at least I will get an idea of what food leads to which symptom.

My disease will change as much as I do.

This is one thing I needed to accept my disease started to flare up again. I was caught up in the idea that I had achieved remission and that everything would stay relatively constant. I just couldn’t see myself going through what I had in high school again, when my Crohn’s had surfaced. Since then it’s been a constant flow and I tried to push any thought that the disease would hold me back aside - which was an advantage for the time-being. However, this also kept me from growing because I just shut everything out. I wasn’t able to harness the power of vulnerability in having an illness to accept myself as I am and love my body.

After spending the last 8+ years in remission, with only some minor episodes, finding out my disease was flaring up again came as a shock to me. I've noticed that I'm the type of person who is apprehensive around big life changes. I like how things are going, I am comfortable with how everything is, and if I have to suffer through it a little, I am fine with that. However, this kind of mindset wouldn't suffice anymore and I've been realizing that more and more every day. My doctor and I have been working hard to put my disease back into remission. I'm trying some new medication out and taking everything new in day by day. IBD is so specific to every person, so how it presents itself or progresses is going to look different in all of us. And as all of us grow into young adults and beyond, our disease will change over time as well. For the better, or not so much.

My body will do some weird things, just learn to go with it.

You would think having to deal with gut pain would be enough, but there are so many other things that can factor in! The most common list of symptoms for Crohn's disease include abdominal pain, diarrhea, and fatigue. But the lesser known, indirectly related symptoms should also include weird noises, smells, urgency and accidents. Your gut will make loud gas-y noises while it’s quiet in the office. You will have to take frequent, unexpected breaks when the urgency gets the better of you. And the unfortunate reality is that sometimes, you won't make it to the bathroom in time.

The most healing part of my being more vulnerable this past year, was accepting these symptoms as they were instead of trying to control them. Because when I’d try to control them, I would get gut upset, constipation, or even more uncomfortable. I eventually started to tell people that yes, I have had accidents in the past and brushed this confession off like it was normal. Humor always goes a long way in these situations. Because of the healing I’ve already had, I want to pursue this resolution in 2020 as well to see my body’s flaws in a new light.

My hope is that you will find some inspiration to create your own list of resolutions for yourself. Whether they are similar to mine or completely different! Join me in making a resolution list for yourself this year and we can both actively improve our life with IBD together!

Starting a Healthy Relationship with Food

By Erin Ard

What should I eat during a flare-up? What should I eat to stay trim? What should I eat to be healthy? What even CAN I eat? Every day I'm plagued with these questions. Even more aggravating, none of which have an easy, clear-cut answer. But having had experience fumbling over meal-planning and studying nutrition, I've learned how to better navigate my eating habits.

Planning and preparing healthy meals for yourself can be an exhausting, time-consuming, and sometimes expensive, process - especially for college students. Now if you throw in food allergies, intolerance, or chronic illness this process can get MORE complicated! Having inflammatory bowel disease (IBD), myself, I know how challenging it is to eat healthy within your own food restrictions; especially if you don't have a good understanding of nutrition, gastrointestinal disease, or what your restrictions are! My disease has been in remission for several years now, so my food limitations aren't as strict as someone having a flare-up, and I still have trouble. For those who are new to the game, IBD is a class of autoimmune diseases that causes inflammation along the GI tract when the disease is active, and can hinder nutrient absorption. With Crohn's disease, a common form of IBD, there is no specific diet to follow to control symptoms. This is probably the most annoying thing you've read today, but I better let you know now.. According to the Academy of Nutrition and Dietetics, we only know of foods to avoid - foods like dairy, high fiber grains, alcohol and certain spices, since these tend to aggravate an inflamed bowel.

Being the nutrition major I am, I get to learn about the Dietary Guidelines for Americans (DGAs). These are a great resource for curious readers wanting to eat healthy and live an active lifestyle. They lay out simple and easy recommendations to help prevent chronic illness, e.g. diabetes or obesity. These illnesses have become more and more prominent in the U.S. and have direct ties with diet. But what about the many other nutrition-related diseases with not-so straightforward ties? Unfortunately, the DGAs aren't designed for all bodies. The research used to develop the recommendations use “healthy” test subjects, of course, not those with chronic illness already. If you have a chronic illness, you’ll need to take extra care to find your ideal, health promoting diet. Better start doing some research yourself or see a registered dietitian! Or try out this idea you've probably never heard before, a food diary! …

Taking extra care in regards to your diet is especially important with IBD. In Crohn's disease specifically, inflammation along the digestive tract can cause nutrient deficiency. Inflammation hinders absorption of important nutrients, vitamins, and minerals; putting you at a higher risk of malnutrition than your healthy roommate. Eating the right nutrient-rich foods and eating enough of these foods can make-or-break living healthy with IBD. All of this in mind, the DGAs are still an easy “go-to” to help you learn about what makes up a balanced meal and why. In the rest of this article, I want to help you navigate the DGAs and share my own troubles with forming healthy eating habits.

Navigating the Dietary Guidelines for Americans with IBD

When comparing the DGAs and what is good or bad for a person with the common IBD form of Crohn’s disease, there are a few noteworthy similarities. For instance, limiting saturated or trans fats, simple or added sugars, sodium and alcohol are wise choices for everyone. They also seem to focus on getting a variety of vegetable and protein choices, emphasize fiber, and recommend lower fat options for dairy. Here you need to be careful. As noted before, certain sources of fiber can hurt a person with active disease. In other cases, fiber can be very beneficial for a person with Crohn’s to add fecal bulk, when the disease is in remission (i.e. under control or without symptoms). It's important for you to understand what foods are necessary for a well-balanced diet and what foods impact your disease management. The DGAs give a great outline, but your personal nutrition plan should have the final say in deciding what to make for dinner.

Dietary Guidelines for Americans 2015-2020

1. Follow a healthy eating pattern across the lifespan.

2. Focus on variety, nutrient density, and amount.

3. Limit calories from added sugars and saturated fats and reduce sodium intake.

4. Shift to healthier food and beverage choices.

5. Support healthy eating patterns for all.

My Relationship with Food

All of this information I have outlined is great and all, but I haven't touched on the emotional aspects of eating yet. Eating is heavily tied to the emotions I experience in a day. My mind bounces back and forth so much in a day when I think about food, eating, how I feel, how my gut feels, how much time I have before my next class, and whether I even have the energy to fix a meal up.

I eat when I’m sad and eat when I'm happy. I'll make a great meal to celebrate an accomplishment or make comfort food if my gut hurts. If I have an important event to attend, I will forego eating entirely to prevent symptoms. If I’m sad or stressed enough, I will also not eat, and wallow in my own pity. It’s confusing and raw, and I don’t understand my eating habits most of the time. Like I said, eating is a heavily influenced by my emotions, so how I feel about my Crohn's or about myself will impact what and if I eat anything. Unfortunately, I've discovered that a majority of emotions I experience will have me make bad decisions about food. But pausing to understand why I make these decisions and what fuels these emotions, has helped me to better understand myself. All of this aside, I love making food.

Striving for Progress

I used to have so many misconceptions about food. The biggest misconception I had to overcome was what I needed to eat to be healthy and what I should eat to look good. As a teen and throughout college, I was more absorbed in looking good, being thin, and keeping belly small. Not maximizing my nutrient intake by eating whole foods and managing my disease resurgence.

I used to be influenced by fads and testimonials - "stay away from dairy for clear skin", "stay away from breads and pasta and sugars to shrink your belly", etc. Everything affected me. Every headline I saw or piece of information I was told. Any advice I was given. Everything I interacted with tried to influence my thoughts, opinions, actions, and lifestyle. Here I thought I was being educated. I never realized I was depriving myself more than helping.

What I’ve been learning is that nutrition is not black and white. The world will try to convince you that there are foods you should not eat for X and foods you absolutely need for Y health benefits. Sadly, this isn’t true. There isn’t one perfect diet plan out there for everyone or for XYZ benefits. Nutrition is much more complicated than that.

With all of this in mind, I would say that right now, I have the healthiest relationship with food I've had in a long time. Studying nutrition was a major player, but I also must give credit to being mindful every day. Being mindful of my cravings and urges has helped me stay away from flare-triggering foods. And I make progress each day deconstructing any false beliefs on what I see as a "healthy" food for me.

My message to you is to educate yourself, learn about food, learn what foods you tolerate, and strive for a healthy relationship with food.

Doing the imPOSSIBLE while living with IBD

By Andi Nowakowski

Limitations and sacrifice are an unfortunate aspect of living with a chronic condition, which is why I was very excited when, this summer, I was able to take part in an activity I’ve been wanting to do for a long time; I donated blood.

It may not sound like much, but between the numerous immunosuppressants I take on a daily basis, my Crohn’s disease diagnosis and all the issues that are in tandem with IBD, I didn’t know if this was a donation I would ever be able to make. Even so, when the company I was interning with over the summer announced it was hosting a blood drive, I decided to do some research and was surprised to find that I would likely be able to contribute!

Whew! This experience was a rewarding mix of anxiety and exhilaration. The day of the blood drive arrived, and I was asked to fill out a survey that included questions about my age, weight, specific medication use, surgeries, etc. They checked my vitals and iron levels and deduced that I was a good candidate to donate. The only thing left to do was sit down and give over some of my life-saving bodily fluids-- an accomplishment I have been dreaming about for years. 

The nurse warned me to look away as she was about to place the needle, advice that, as a professional patient, I flippantly dismissed. Being an IBD patient, I am used to being poked and prodded with needles. Let me tell ya, that needle was MUCH larger than I anticipated. A word to the wise, if you have a fear of needles, you may want to keep your eyes averted at all costs should you decide to donate. In the end, it took about 15 minutes. They took a pint of blood while I sat in a reclining chair and enjoyed a well-earned snack. I was shocked at the amount of blood they drained out of me. Turns out, the average person has about 10-12 pints of blood in circulation but only needs about 8 to function normally. Honestly, though, I was really proud of myself for taking on this challenge and pushing my own limits.

Donating blood is a thankless, but worthwhile task. The person who will ultimately end up receiving your blood will never know who you are, but it is a life-saving and meaningful endeavor. For many, donating blood is a routine measure and most people probably don’t think twice about it, but for me, it was a way of giving back a little bit of good to the world. It was my way of saying, “Screw you Crohn’s.” It was my silent triumph against IBD and the limitations that come with it. The goal of this article is not to persuade you to go out and donate blood. I will say that it was physically challenging for me to do so. That being said, I do hope to inspire you to push yourself and seek out the endless possibilities that this world has to offer. Be patient with yourself and your condition, but don’t let IBD stop you from pursuing your dreams. Allow your experiences to strengthen your resolve and keep challenging yourself to experience all that you can. 

As one of our founders, the late Cory Lane, used to say, “live each day like an adventure.”

Andi

Life Hacks for IBD

By Leah Clark

It seems like these days there are life hacks for everything. Want to remove stems from strawberries? Poke a hole through the bottom with a straw. Color your keys with nail polish so it’s easier to identify them. You even can start harvesting plants using old paper tower rolls. The point is, there are all of these different “hacks” used in the everyday life, but are there some for those with IBD? We’ve compiled a list of five of the most useful and best life hacks for patients with IBD.

Use online services for errands when low energy or mobility struggles arise from IBD

The internet can be a wonderful place, and that is especially true for online shopping and services. Sometimes, those with IBD have problems running errands or leaving the house to pick things up. It can take up so much energy to do something as necessary as grocery shopping for people with IBD because of how much work it takes. For this, a nice hack is to order things online and have them shipped to your home directly, taking out the work and expended energy of having to do it yourself. Many grocery stores now have services that offer delivery of food and other items the same day you order. Ordering things online from department stores, too, saves time and effort. Many times, stores online offer more options than seen in stores, too!

Mobile apps are available to track symptoms, record food diaries, and more

One of the best life hacks for people with IBD is right at their very finger tips. There are so many apps available for mobile devices that can make managing their disease much easier. If diet is a concern for your disease, try using an app that records your own food and keeps track of nutrient breakdowns if you’re trying to focus on certain areas of your diet (such as maintaining high vitamin levels or increase calorie content). This also keeps a record so you can look back and see what might have affected your body if your symptoms worsen, as you can check for patterns. An all around good IBD app is called Cara Care, and it helps you track all of your IBD symptoms, such as bathroom frequency and sleep. It even allows you to create your own custom areas to cater to your unique IBD experience.

Monthly subscription boxes can eliminate the stress of always remembering necessary products

Much like the first life hack mentioned, it can be a struggle to spend time and energy to go shopping for things you need in your life. Not only that, living with IBD can be mentally draining, and it can be difficult to keep track of everything if your brain is exhausted. Luckily, there has been a great trend of companies offering monthly subscriptions where they ship products straight to your door that can make living with IBD a lot easier. Companies such as Blue Apron and Hello Fresh offer meal prep that is delivered straight to your door, eliminated the struggle of having to plan meals during busy times of your life. Other services such as Dollar Shave Club and even Walmart cater to provide hygiene products that don’t break the bank.

Keep an emergency IBD kit with you whenever you travel

Not so much a hack as it is just a smart idea, but a good idea is to always travel with essentials that can help whenever an IBD problem arises. This can include wet wipes for the bathroom, an extra roll of toilet paper, more underwear, an extra set of prescription medications or laxatives, a heating pad, or anything else that can ease symptoms when they occur. Accidents can happen, and it is especially hard to deal with them when you are far from the comfort of your own home. With the emergency kit, if anything unexpected happens, it will be easier to handle.

Sign up with your university’s center for disabilities services to get accommodations

Maybe a lesser known service that universities offer is their center for students with disabilities. Each university has a different name for it and how they provide accommodations, but they are here to help. With this service, students can sign up with their documented disease and receive accommodations they need related to their disease. In terms of those with IBD, these accommodations can range from requesting a dorm room nearest to a bathroom to receiving extra time on quizzes and exams for bathroom breaks. It’s important to set up an appointment with the service to ensure enough time allocated before such accommodations need to be implemented (such as extra test time). Also, if you ever need to take leave from school due to your disease, the center for disabilities will work with you until you’re able to return to class.

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What are some “life hacks” that you use for your IBD? Comment below and share with the rest of us so we can make living life with IBD a little bit easier!

Crohn's on a College Budget: Tips for being a mindful shopper and saving money

By Erin Ard

Probably one of the biggest thing I struggled with in college, other than balancing my social life with academics, was money. I wasn’t very adept at budgeting my spending. I probably ended up spending much more than I needed and wasn’t able to stretch my money out as long as I could have. I spent what I had on what I wanted and there were no trade-offs; that is, until I realized I had been spending too much and would forego grocery shopping that week. Not a good spot to be in! Especially for someone who experiences stomach pain when I go too long not eating. The healthy way to approach spending would have been to ask myself, “How much money is left over after my necessary expenses?" Like tuition, books, rent, utilities, Remicade copays, etc. "How much do I want to spend on groceries? How much do I want to put towards fun?”

If you've ever been asked by your parents, tried to do some adulting yourself, or written up a grocery list, then you may have already asked yourself, "What is my budget?"

The truth of the matter is that setting a budget is entirely personal. How you want to spend your money is up to you? If you want to put most of your green towards 6 packs of assorted White Claws for college football game days, leaving yourself $50 for groceries, I can't stop you. You do you, honey! I just hope I get an invite to your tailgate!

There are so many factors to account for when setting a budget, including: money distributions, frequency of spending, being environmentally conscious. Reaching the point of having a well-groomed budget is a process of trail and error, meaning you'll have to dip your toes in before you can perfect it. This month I want to help any of you curious about how to set a monthly college budget, mindful grocery shopping, and finally, tips to save money both before and while at the store! Skip to whichever section you are most curious about!

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Making a Crohn's-Compliant Budget

First, calculate your monthly expenses.

Take your monthly income and subtract your monthly expenses that, no matter what, you need to pay! This could include rent, utilities, Netflix, medication copays, and whatever else suits your lifestyle! If you're starting with a financial aid reimbursement, make sure to include long-term expenses over the semester (e.g. tuition or rent through December). You can do this on paper or in a spreadsheet. (Tip: Excel has some nice templates to work from - because why do it all yourself!).

Second, distribute the money left over.

You see the amount left over from your necessary expenses, that's your budget and that's all you get! Let's get a little more specific now. Divide your left over money into these categories: Food (grocery shopping and takeout), Self-care (healthcare products), Fun (for local events or social gatherings), and anything else you can think of that applies to you (medical, credit card debt). If you are having trouble knowing how much to allot, How much do you normally spend when you go to the grocery store?

Mindful Grocery Shopping

Mindful grocery shopping means, well pretty much what it sounds like, not going in and grabbing things mindlessly. You should go shopping with a goal - to buy healthy foods for yourself, on a budget, and within reason.

Be mindful of your current state. In other words, never go shopping when you are hungry. Whenever I go shopping hangry, I tend to hone in on snacky, sugary, junk foods - all of which I shouldn't eat on a Crohn's conscious diet.

Be mindful of what you place in your cart. Are you shopping from a list? Are you grabbing a bunch of ingredients for a recipe? Will you get home and inevitably realize you have a bunch of ingredients but none that form a whole recipe?

Be mindful of how much you are putting in your cart. Get enough to last you until your next trip, but not too much that will go bad before you use it. This is particularly important if you get a lot of fresh produce and perishables.

Tips for Saving Money

Saving money on your groceries mirrors being a mindful shopper and includes proper planning.

• Research some recipes you'd like to try and plan out a weekly menu. Start with planning 2 breakfasts, 2 lunches, and 3 dinners (since you will probably have leftovers).

• Tailor your recipes to the produce that's in season. These veggies and fruits are the cheapest at that time.

• Make a list of all the items you need and ONLY GET THOSE ITEMS! Unless, of course, you stumble upon something you forgot.

• Grocery shop every week or every other week. This will help cut down on waste and allow you to replenish your fresh produce.

• Stock up on nonperishable items you use most often when you can (i.e. there are sales!). This includes supplements or other products that help sustain you during an IBD episode.

• Compare the prices with off brands or similar items. This may not save you a lot, but a little adds up over time.

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There are plenty more factors to be aware of when setting up a budget and being a mindful shopper when you have Crohn’s disease. I hope this article has helped you think more about being a green-, environmental-, and personal health-conscious adulter!

What tips do you have for anyone with Crohn’s or Colitis and shopping on a budget?

Explaining IBD to Those Without It

By Leah Clark

Imagine your abdomen is a blender. Now, someone shoves 10,000 little knives into that blender. Crohn’s disease is pressing the on button.

I have been living with Crohn’s disease now for about ten years, and this analogy is the best I have conjured when describing my pain to those that have never felt it. To my closest friends, I feel very comfortable discussing my health and my symptoms. When I’m having a bad IBD day, they know about it. Whether it’s from the expressions on my face, my absence from the group, or strictly from me telling them, they know. Describing my disease to others that don’t know more, or/and have never heard of Crohn’s disease is another story.

It’s more than just a stomach ache, or it’s more than an overall “not feeling well.” When I talk about being tired, I’m talking about my entire body aching with every step I take. I’m talking about how even the thought of getting out of bed brings me to exhaustion because I don’t want to exert energy. Fatigue is only one part of it. When I talk about pain, I’m talking about truly stabbing pain, like a pitch fork plunged into your body and every time you move, the pitchfork twists a little deeper and a little wider into your gut. I’m talking about a boulder the size of a microwave being pressed into your intestines, with each step you take another rock being added on top. I don’t even want to get into the toll my mental health takes because of my disease; I’ll leave that for another discussion.

“Imagine your stomach is a blender. Someone shoves 10,000 little knives into that blender. Crohn’s disease is pressing the on button.

”

I’ve had many years of experience in processing and handling the pain associated with my disease. I’ve also had many years of explaining to people the reason why I am in pain and exactly how I am affected by my Crohn’s disease. Sometimes I enjoy talking about my disease; I see it as a way to communicate and educate others on the disease so maybe next time they meet someone with it, they can have more sympathy towards them and a better understanding. Other times, I find it a chore. Going on and on, again and again, explaining the same story I’ve been telling others for the past ten years. I always start with the same script:

1. I have Crohn’s disease. Have you ever heard of it/do you know what it is?

2. It’s an inflammatory bowel disease. Do you know what that means?

3. Basically, my intestines attack themselves and I need medicine to feel better, otherwise bad things can happen to my digestive tract.

Depending on how interested the person is, I go into more or less detail, explaining more than just “attacking my intestines.” The average person does not have a gastroenterology medical background, so I keep it light and leave out the details of my bowel movements. When I decide to go off script, it’s usually from two different reasons. It’s either because I am not feeling well and I need to express my pain someone (hence, where all of the previous analogies I’ve given come into play), or when someone is just not getting it.

Generally, people are pretty understanding when I explain my illness, but sometimes you get those wackos that feel the need to put their opinion about your illness down your throat. People have tried giving me new diet tips or foods to eat to “cure” my disease. Suggestions of “just workout more, try yoga” as if yoga is the magical cure to any problem I have. People have expressed how fortunate I should be that “at least it’s not cancer” or a different illness. One thing never to say to someone with a chronic illness is, “Well, at least you don’t have [insert any other disease].” It doesn’t make us feel better, it honestly makes us feel worse because it invalidates our own pain and suffering from the very illness we have to live with for the rest of our lives. I would never wish my disease onto another person, but when it comes to times like this, I sometimes wish they could just experience for a day what it’s like during a flare. Then they’ll see if yoga is really the best thing for me.

“One thing never to say to someone with a chronic illness is, “Well, at least you don’t have [insert any other disease].” It doesn’t make us feel better, it honestly makes us feel worse because it invalidates our own pain and suffering.”

I’m not trying to bring the mood down and paint a bad picture of what living with Crohn’s disease is like. For me, it’s not always pain and suffering. There are things I’m happy about and things in my life that wouldn’t exist without it. Bonds I’ve created with other people with IBD, self assurance and confidence in myself to overcome obstacles and challenges I face everyday, and awareness of my health are just some of these examples. My disease has shaped me into the person I am today, and although it sometimes feels like knives poking out of my gut, on the days it doesn’t, I’m happy that my IBD has given me a platform and a place in a community with compassionate people going through the same things I am.

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?

Bone Broth: Nature's Multivitamin

It seems that #guthealth has become popular in the wellness space over the past year or so. With more awareness of IBS, Leaky Gut, SIBO, and many other bacteria imbalances in the gut being displayed through the media, there has been an increase in remedies that are bound to “fix” all gut issues. I am an advocate for taking preventive, healing measures to get to the root cause and work towards better overall health - not necessarily relying only on medication. However, these so-called remedies are not a “cure-all.” While diet plays SUCH a significant role in gut health, but there are far too many factors that contribute to overall gut health that are often overlooked. In terms of IBD, chronic inflammation is exactly what it sounds like – chronic. Those who are facing this issue often try several things to help tame inflammation and improve their health, but there is not one “cure” that will work for everyone. Many things can trigger inflammation, and those are different for each person. Common examples include: food sensitivities / intolerance, stress, hormone imbalances, and mental strain. All of which can cause added irritation and stress to our system which results in inflammation and often the inability to turn off our “fight” mode.

While stress is a main component of a suppressed immune system there are plenty of other factors that influence the lining of the gut itself - factors such as prolonged exposure to antibiotics, inflammatory foods, toxins, etc. Eventually, if the impact of these factors pile up, the lining of the gut can suffer and result in permeability issues that may cause excessive inflammation due to malabsorption of food and minerals.

One thing I am currently working on in terms of my Crohn’s Disease is repairing the lining of the gut. Due to years of antibiotic treatment, inflammatory foods, and chronic stress, the lining of my gut has taken a toll and is not as impermeable as it should be. I am planning on writing a separate post about my current protocol, as well as the lifestyle changes I am implementing, but for now, I would like to talk about two things I have added into my routine and their role in digestive healing.

There is a chance that either in your research, scrolling through social media wellness accounts, or talking with your doctors, you have heard about bone broth. Many healing diets such as GAPS and the Specific Carbohydrate include this as part of the beginning protocol, and for a great reason! Nutrients and minerals in bone broth are essential to improve and heal the lining of the gut. These nutrients help decrease inflammation, balance good / bad bacteria ratios, and increase the immune response. Bone broth is nutrient-dense, easy to digest, rich in flavor and boosts healing within the entire body – what’s not to love!

What exactly is Bone broth?

You may think of broth that your mom used to have you sip when you were sick as a kid, typically what is used in homemade soups. However, bone broth is much different – it is nutrient-dense, thicker, and in my opinion, SO much better. Bone broth is the result of steeping the entire bone remains of the animal (beef, lamb, pork, chicken, etc.); including the bone, marrow, tendons, ligaments, etc. By including all of these components, the amount of nutrients found in this broth is significantly high compared to regular broths. Simmering using the “nose to tail” method of the animal protein source enables the bones and ligaments to release healing compounds like collagen, proline, glycine, and glutamine that are transformative for your health (1). Bone broths contain minerals and essential amino acids in forms that are easy for our body to absorb. Some of the minerals included are; calcium, magnesium, phosphorus, sulfate – all of which are often sold as pricey supplements and used to reduce inflammation, joint pain, and arthritis.

It is important to be mindful of the kind of bone broth you are consuming. Meaning, not all store-bought broth is created equal. If you’re not going to make your bone broth at home (from scratch), it is crucial to check the ingredients of what you are purchasing in the store! Like many other products, manufacturers like to sneak in monosodium glutamate (MSG), which is recognized as a meat flavor but is actually a neurotoxin – and as mentioned earlier, toxins affect the gut! When looking at the ingredients list, you should seek out whole, organic ingredients such as the bone broth (filtered water and animal bones), organic vegetables, and minimal spices. Try to stay away from added preservatives because to reap the full benefits of bone broth it is best to consume it in its most natural form – as our ancestors would have prepared it!

Overall, bone broth is a great place to find all of the valuable amino acids, collagen, gelatin, and trace minerals. There are dozens of different nutrients found within bone broth, many of which can’t be obtained easily from other commonly eaten foods! I am a firm believer in using food as medicine and consuming as much nutrient-dense food as possible. Broth is one of the easiest ways to check those nutrient boxes off without having to consume a massive pile of veggies in one sitting! By regularly drinking bone broth, or using it in recipes, you can promote healthy gut integrity while reducing inflammation and permeability. Now let’s dive into some other benefits from regularly consuming bone broth, shall we?

1. Protects Joints

I’ve already mentioned the anti-inflammatory properties that broth has due to the nutrients. But one of the BEST components found in this broth? Collagen. Bone broth is one of the world’s best sources of natural collagen – a protein found in vertebrae animals; in their bones, skin, cartilage, ligaments, tendons, and bone marrow. Collagen is very beneficial for the growth of hair, skin, nails, and bone health (2).

As we get older, our joints naturally experience depletion resulting in loss of flexibility. Supplementing with collagen matters because as we age, cartilage diminishes. As the broth simmers, animal parts release collagen and it becomes readily absorbable to help restore cartilage.

Another valuable component in the stock is gelatin. Gelatin acts like a soft cushion between bones that helps them move smoothly without friction. It provides the building blocks that are necessary to form and maintain strong bones. Significant amounts of both collagen and gelatin form and reform connective tissue to help take the pressure off of aging joints and supports healthy bone mineral density. It’s never too early to start taking preventive measures to make joint pain less problematic as you get older!

2. Boosts Detoxification

As I have previously mentioned, in our Western World, the average person is exposed to a variety of environmental toxins, pesticides, artificial ingredients and chemicals. The human body is amazing in terms of having its own means of detoxification from heaving metals and other toxins. However, it has a hard time keeping up when it is flooded with large amounts of chemicals. Much like if you were to procrastinate and become swamped with homework, you’re suddenly overwhelmed and may not perform your best on the task at hand. Bone broth is considered a powerful agent in detoxification because it helps the digestive system expel waste and promotes the liver’s ability to remove toxins. It also helps to maintain tissue integrity and improves the body’s use of antioxidants.

Stock contains potassium and glycine – both of which support cellular and liver detoxification. By supplying sulfur (especially with added vegetables, garlic, and herbs) and glutathione, an agent that lowers oxidative stress, detoxification is boosted. Glutathione helps with the elimination of fat-soluble compounds, especially heavy metals such as mercury and lead. It also aids in the use of antioxidants, the absorption of various nutrients, and with liver-cleansing functions! With the increased intake of essential minerals that bone broth stimulates, the minerals act to remove toxins by stopping heavy metals from attaching to mineral receptor sites. If they can’t bind, they can’t mess with our systems!

 3. Supports Immune System Function

I have briefly mentioned at various times the permeability of the gut lining, inflammation, and a suppressed immune system. All of which contribute to multiple issues with what would generally be a healthy inflammation response.

Leaky gut syndrome occurs when undigested particles from foods seep through tiny openings in the weakened intestinal lining and enter the bloodstream. The immune system detects these invaders and becomes hyperactive to regulate the body. The hyperactivity increases inflammation and leads to dysfunctions all over, not just in the gut where the primary issue lies. The immune system releases high levels of antibodies that cause an autoimmune–like response and begins to attack healthy tissue. Individuals that already have a compromised autoimmune system, such as IBD patients, may suffer considerably more damage from a response because the system believes the particles in the bloodstream to be much more of an invader than a conventional system may.

Bone broth is observed to be one of the most beneficial foods to consume to restore gut health and therefore support immune system function and healthy inflammatory response. Collagen, gelatin, and the amino acids proline, glutamine, and arginine help seal the openings in the lining and support what is known as “gut integrity” – the intactness of the lining of the intestine to maintain its structure and function.

The amino acids and anti-inflammatory benefits create a perfect atmosphere for powerful immune-boosting to occur!

4. Good for the Gut

Bone broth stock is easily digested and soothing to the digestive system, unlike many other foods, which can be challenging to break down. Those with food sensitivities and intolerance (such as wheat or dairy) already have a hard time consuming many foods that may be considered “inflammatory.” Therefore, it is essential to look after the integrity of the gut, so vital nutrients are absorbed to support other bodily functions and overall health. After all, food is only useful if we have the means of absorbing its nutrients.

Bone broth has also been found to help heal the lining of the gastrointestinal tract. Critical components for digestion support that are found in bone broth include - collagen (proline / glycine), gelatin, and glutamine. Although there are many other beneficial minerals contained, these are most helpful to many IBD patients that have difficulty successfully digesting and passing bowel movements.

A healthy digestive tract consists of a single, tight layer of epithelial cells, a thick mucus layer, and a diverse group of microbes (bacteria in the gut). Gelatin is a significant component when it comes to the lining of the digestive tract because it supports a healthy lining of mucus within the system. The water is absorbed within to help maintain the layer of mucus that blocks gut microbes from the intestinal barriers. By drawing fluid into the intestine, the motility of the gut is improved, and healthy bowel movements are supported.

Collagen is another important component because it contains two essential amino acids: proline and glycine. Proline is necessary for the formation of collagen, and glycine works to improve digestion by increasing gastric acid secretion. Studies are currently being conducted and have shown that individuals with IBD, mainly Crohn's, are more likely to suffer from low stomach acid (3). Because the proper pH of the stomach signals the continuum of the digestive cascade, many people with low stomach acid face difficulty processing meals efficiently.

Summary

I know that was a lot of information, some of which may not have processed the first time reading it through - but that’s perfectly okay! Luckily you don’t need to know the names of all the essential amino acids found in bone broth to reap the benefits. I included this information because I know when I am learning about a new “supplement” that can improve my health, I’d like to know exactly how it works and why it is good. Many others like me enjoy doing their research to learn more, but others enjoy knowing the benefits, plain and simple!

So, another run down. When taken consistently, bone broth is exceptionally nutritious and works diligently to repair multiple components of your digestive tract. In addition to this, benefits are often seen through support in joint and bone health, hair / skin / nails, and detoxification processes of other organs within the body. It truly is impressive how functional this food is - hence, the nickname “nature’s multivitamin!”

I highly recommend giving this a try, whether you buy it from the store or experiment with making your own. I believe it’s wonderful! I drink mine first thing every morning, and it’s become something I look forward to - some people drink coffee, I drink bone broth (with an added scoop of collagen)! I hope you found this article informative and it piqued your interest to try something new, or reintroduce something back into your routine!

Stay Lovely,

Erin

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

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