An Invisible Illness is Still an Illness

By Erin Dunne

Images from the "Suffering the Silence" web campaign that allowed people to publicly share their experience with chronic illness.

Images from the "Suffering the Silence" web campaign that allowed people to publicly share their experience with chronic illness.

When I was younger, one summer my family was visiting my grandparent's lake house in Indiana. The water was low enough my cousins and I were able to walk out to the anchored raft off the edge of the deck without much swimming or with a life vest. On the way back to the deck I felt a sharp pain in my right foot and felt a piercing sensation with every step I took. My grandmother sat me on the deck to find I had stepped on a large shard of a broken bottle and it was lodged in the center of my foot. I remember bawling from the pain as she attempted to take the shard from my foot but after it was out, I only had a small bruise and a scar. The discomfort I felt in this moment was easily seen by my family members because of my expressions and they could physically see what was causing the pain- but it isn't always this easy with an invisible illness. For many people, without physically seeing the direct source of the pain, it is hard to believe that there is any pain at all. Not seeing the discomfort of an individual doesn't mean that they are not sick. It is not seen by the naked eye, so it is easy to assume that a person is healthy or "normal" when in reality, a person could be having a really bad flare day but "they look fine." Something can be seriously wrong inside of you that only you can feel.

“Just because you cannot see the pain another person is dealing with doesn't make it any less real.”

An Invisible Illness is a chronic condition that is not visible to an onlooker. Examples of invisible illnesses include: Digestive disorders, heart conditions, diabetes, lyme disease, mental illness, etc. The symptoms that are often associated with these illnesses can hinder ones ability to enjoy life and be involved in everyday activities they love- which can be very frustrating. Adjustments are often made to meet the needs of their new, often lower, energy levels and limited ability to move. While medication and treatment plans can help greatly with the physical symptoms, the mental game that can occur due to encounters with others, insecurities, and fighting one's own thoughts can contribute to the pain an individual is already in.

There are times where one may be interacting with others and it seems as though they are witnessing insensitive encounters and whispers from those around them. Comments are often made as to why they are often absent to class, work, and social events. Even comments on ones mood- why they are short tempered, withdrawn, or why they lay around so often (maybe even being referred to as lazy). "Laziness" to an invisible illness sufferer can be just as important as any medication or treatment they are taking to help their symptoms because it is helping their body recover from the havoc that is wreaking within. When explaining how they are feeling to others, it is common to be countered with the comment "but you look so good." Further fueling the idea that capability is based on the way a person looks. All of these small contributions can lead the individual with the illness to question themselves and often look down on their recovery. There have been times I have felt bad for having to cancel plans for being sick- I feel as though I let others down, or I have gotten mad at myself for not being well enough to go about daily activities. There are times I compare myself to others that are in good health and think of when I was able to do similar things but I become upset with the fact that I am unable to do those things currently. While it is easy to automatically go to these negative places, they truly don't help with recovery so what is the point? Focusing on so and so's good health won't make my symptoms any better so why am I wasting my energy on being jealous? It is best to focus on yourself and your needs in the current moment.

These illnesses can only be experienced and felt by the individual that has them- we can try to describe our discomfort to others but it is hardly ever satisfactory. Each day can look different for various people because each person has different degrees of productivity that is possible for them. For me, on a good day I am refreshed from a good nights sleep, am able to eat at every meal and even snack in between, get some form of exercise, and have concentration throughout the day that allows me to get tasks like errands and homework done. Other days I may only be able to do a fraction of these things and witness extreme brain fog that makes concentration close to impossible. There are times where I have multiple productive days in a row or I have low energy days that I often become frustrated with. One of the biggest lessons that I have learned through the years is to give myself grace on the days that I may not be able to get done what I had originally planned.

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As I have mentioned before, I am a big advocate of listening to our bodies- it knows much quicker then us if it has been overworked and needs to recover. Giving yourself grace and being kind to your body is key with any invisible illness because we too cannot see what is physically causing us pain. Sometimes we do not even know of what event or substance caused the discomfort but we experience it. If you had things planned for the day and you wake up and don't feel as though you can complete everything, that is OKAY! Do what you think you can handle and be easy on yourself. Move as much as you can throughout the day, be gentle on your gut and nourish your body with foods that you know work best for you, and do something that makes you happy! You know yourself and your healing abilities better than anyone else so you must do what you can to honor your body in times where it may need more attention. It's okay if others do not completely understand or are able to empathize to the degree you wish they could, but it is important that they are as understanding and supportive as they can be. Although it may feel like it at times, there are others in similar situations that understand the isolation that comes with invisible illnesses. It is important to acknowledge that you are never alone in your journey, even in moments where it seems as though you are.

 

 

People could say to those without invisible illnesses that they are lucky they don't have to deal with a disorder. And while I would never wish an illness on anybody, I don't necessarily agree that I am less lucky I have to live with an invisible illness. Are there some days I wish I had never been diagnosed with Crohn's Disease? Absolutely- but those are typically the days that I have become so fixed on the negative that I forget to acknowledge the positives that have come out of my diagnosis. There is always room for growth and I believe that having Crohn's has allowed me to grow remarkably into a person that empathizes for others, I wish to care for and help others because I understand the pain and loneliness that can be felt amidst illness, and I have been able to be a part of a wonderful IBD community. On a more personal level, I have found a love for cooking as I have had to alter my diet to fit my bodies needs, I am more in tune with my body and mind, I understand how to handle low energy/ mentally challenging days, and I give myself grace more than ever before. Yes there are times where it is very hard to handle the insecurity that others don't understand and may judge because they may think I am lying about my pain, but I know myself more than anyone and if I feel the pain, I know it is real- I don't need to validate that to anyone else.

There are many highs and lows of having an invisible illness but I think it is very important to try to find as many highs as possible to make the lows not seem as bad, but also to learn how to handle the low moments better. Life is happening for us, not to us and looking at these illnesses as opportunities for growth can help our perspective towards them remain as positive as possible.

Stay Lovely,

Erin D.

Supporting our Mental Health: Moving past or accepting your negative unconscious thought

By Erin Ard

Happy #MentalHealthAwareness month! AND #CeliacAwareness month! And hey, if you're into it.. #InternationalMasturbation month too!

The month of May is known for quite a few awareness and observance campaigns. Interestingly enough, the main topic I want to address in this post loosely relates to each of these. #NUTS! In mental health, this can refer to your negative unconscious thoughts. For Celiac disease, these can be a great source of protein on a gluten-free diet. And well.. you get it.. But I mainly want to address mental health when you are living with #IBD.

There is evidence that #depression and #anxiety are more common in individuals with IBD compared to the general population. Which makes absolute sense when you think about what we deal with on a daily basis and during a flare. Mental health really becomes a topic of discussion when you put the stress of school into the mix.

I can remember an incredibly stressful time during my semesters as an undergrad. I was juggling 5 paper deadlines within the same week with exams looming in the weeks to follow. I ended up having to sacrifice my social life, sleep, and taking time to care for my body. Not having any time to properly focus on my health added to the stress. It felt like I was failing at life because I didn't have time for myself or my friends and family. Fortunately I made it through this time despite needing to make these sacrifices, but after it was all over I made my health a priority.

During these times, it's easy to fall into bad thinking habits. Our negative thinking habits are hard to shake. A lot of times we don't notice them. These gloomy, self-deprecating thoughts can feel so natural to our personalities or our every day thought processes, but they don't need to be. Thankfully, you can retrain your brain to respond differently when these thoughts pop up and here is one strategy how. Say it with me!

"Awwww NUTS!"

This is a common saying for me that is usually followed by a lot of giggling.. But this word found a whole new meaning when I learned about the concept of NUTs as it pertains to mental health and #mindfulness. When I discovered this lesson, I thought it was so enlightening that I had to share it with all of you!

If you have ever felt held back by your own thoughts, tendencies, or fears. This is for you.

NUTs appear in our unconscious and tend to affect how we think and act throughout the day. They can impact how we view ourselves and our ability to face adverse situations.

These are incredibly personal and can look different to each person. As individuals with IBD, we probably share a few common negative thoughts. It may sound like, "I can't live my life how I want because of this disease." " I won't get through another flare up." "I will never live normally again." or "I hold my friends or partner back."

The gist of the practice is to name these thoughts and evaluate them. Here are my top five negative thoughts (some of which, you might have too) and what happened when I brought them to the front of my consciousness..

  1. "I am going nowhere."

  2. "My anxiety keeps me from achieving my goals, meeting new people, and finding love."

  3. "I am unable to connect with others."

  4. "No one is interested in what I have to say, so I won't say anything."

  5. "I won't be successful because of my Crohn's."

Saying mine out loud was oddly therapeutic, almost satisfying. Even now, when I read them over the more silly they seem. When I formed that first NUT, the rest poured out in a rush. More and more came to the forefront because so many of these had been piling up over the years. Rather than acknowledging them, I would shove them aside. I tried to ignore them - like if I forgot about them, they wouldn't be true. I ended up delaying my chance for peace of mind.

If I had given them some thought as they arose, I would have realized how much unnecessary power they had. They secretly dominated my mind for several years. How I acted in social situations, dealt with difficult circumstances, coped with certain physical limitations, or processed the aftermath of some high emotional states. It was easy to find myself down a rabbit hole in my unconscious surrounded by debilitating negativity. Because of this exercise, I'll be able to find a way out now.

I can't say that I've completely moved past these negative thoughts, however. Honestly, some of them still give me a pang of discomfort because they were so deeply rooted in my unconscious mind. You might find that some of your NUTs hold a bit of truth to them, but that is still okay. Even if you do find one to be true, can you accept that?

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I highly recommend trying this out for yourself! What thoughts could be holding you back or keeping you from seeing your potential? Name the first things to come to your mind and ask yourself, are these true? Do they have to be true? How do they make me feel? And then ask yourself, what would my life look like if I no longer had these thoughts? Be sure to open yourself up to whatever happens in this exercise.

With love,

Erin

A special thank you to the Mindful Leadership Program and Elisha Goldstein for teaching this concept to help others.

Stress, its effects on IBD, and how to handle it

By Erin Dunne

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We all have had moments where it feels like everything is happening all at once. Whether that be good or bad, it can be extremely overwhelming. With school and work, it may be projects piling up, exams, or a packed schedule. In our social lives, we may have weddings, plans with friends, and family events that happen within a short time frame. We may think of stress as a superficial, short term feeling that goes away once the chaos has subsided, but that is not always the case. The effects of stress can stay within the body for hours and sometimes days after the stressor has vanished. The intensity of the body's response depends on the individual and how they handle the stressor- either focusing on their emotions, avoiding the situation, or nourishing themselves and acknowledging the issue. It is essential to understand the different types of stress, how each variety can affect the body, and how to handle yourself when faced with such situations. Knowing what to do is not only beneficial for your overall health, but it makes you feel powerful and amazed at the control you can have over the situation!

What is stress and what does it do to the body?

Stress is the body's response to any situation that poses demands, constraints, or opportunity (Riehl, 2019). There are two main types of stress that people face: Acute and Chronic. Acute is short-term and is most common. An example would be daily occurrences such as a project deadline, or being stuck in traffic. Chronic stress is prolonged and can contribute more harm to the body if experienced too often. An example would be involvement in a toxic relationship. When the body detects a threat, the brain activates the sympathetic nervous system which stimulates a response typically known as the "fight or flight response." The sudden release of hormones, primarily adrenaline and cortisol, prepares the body to take action. When the rush of hormones is constant, this can cause a lot of wear and tear on your body. Once the alert phase is activated, the goal of the body is to return to its natural, parasympathetic state with regulated hormone levels.

When in "fight or flight" mode, the body focuses all of its energy into systems that are necessary and shuts off others that are not being used. One that becomes restrained is the digestive system. While there is no direct correlation between stress and IBD, more research has been conducted to investigate the influence of stress triggering symptoms. Ongoing stress can often go unnoticed, but it continues to impact the function of certain systems of the body. Stress is hard on the digestive system, as it affects which nutrients your intestines absorb, and how quickly food is moved. A recent study has found that IBD symptoms may increase because the sympathetic nervous system acts on the lining of the colon and may worsen current inflammation. Evidence has also led scientists to believe that stress hormones may help harmful bacteria reside in the intestines (Norton, 2010).

What causes stress?

This reaction is initiated by the presence of stressors, anything that triggers a physical response. The causes of stress differ for each individual- we all have our unique threshold and perceive situations differently. For example, if there is a presentation that requires the student to talk in front of their class, one person may not mind public speaking and are not worried about presenting, while another student may dread public speaking and feels exceptionally anxious. Of course, not all stress is bad- an example of good stress would be the feelings you may experience before an athletic event. Some common stressors include school, work, busy schedule, traveling, finances, lack of sleep, and poor diet.

How to handle stress:

Generally, there are two types of coping styles; Problem-Focused and Emotion-Focused. People who are Problem-Focused approach the issue head-on, whereas people who are Emotion-Focused tend to lean into distractions and avoid the issue. It is critical to recognize what coping style you tend to resort to naturally so you are more prepared when faced with a future problem. You are also able to understand yourself better! Regardless of your natural response to a stressful situation, it is also essential to know how to take a break amid chaos. Taking a break allows yourself to calm down and assist your body back to its normal state.

Stress reduction techniques can help you find peace and maintain perspective when consumed by pressure. It is vital to find something that appeals most to you- what works for one person may not work for another. Trying out a few different techniques can help you see what works best for you and can quickly become your go-to reaction to stressful situations. Some great things to incorporate into your stress managing tool-kit include: incorporating physical activity, talking and spending time with friends, reading, and baking. Even taking the time to focus on your breathing when you find yourself becoming overwhelmed can help manage the intensity of the stress response. Finding an activity that stimulates rest, clears your head, and makes you happy is one of the most beneficial things you can do for your overall well-being!

How I learned to calm my mind with movement:

Through the years, as I have become more aware of listening to my body and provide for its needs, I have learned the importance of handling stress better. I recognize now that when I experience significant amounts of pressure in a short amount of time, not only do I feel exhausted but I also suffer from an increase in symptoms. If I am under stress for a more extended amount of time, I have prolonged symptoms and discomfort. I have developed habits of practicing yoga, going on walks, and meditation- all things that allow me to slow down my mind and put life on pause. However, I do not only do these things when I'm stressed. They bring me such joy and contentment; I make time each day to do at least one (sometimes all) of these activities!

One of the best things about yoga is that it can be done almost anywhere. I love taking advantage of the beautiful weather and fresh air!

One of the best things about yoga is that it can be done almost anywhere. I love taking advantage of the beautiful weather and fresh air!

Typically, I start my morning with at least a ten minute meditation which helps me set my intentions for the day. While I have tried to sit in silence and meditate, my attention span is not that disciplined yet, so I use guided meditations from Headspace. If you're interested in practicing meditation, I would recommend downloading an app or finding videos on YouTube- both great resources! Another thing I do quite often is take what I like to call "Mindful Walks." I put on a podcast or playlist and take a long walk, making sure to be present and aware of my surroundings.

My favorite way to relieve stress is through my yoga practice. When I was younger, my older sister and I used to take classes together, and I have been intrigued ever since. Through the years I have leaned into my yoga practice to help quiet my mind and work on connecting my body and brain. At first, I was intimidated by the idea of flowing on my own. I thought it had to be in complete silence or to mellow music, and surrounded by aromatherapy. I soon realized that the purpose of yoga practice was to embrace my own intentions and make the most out of my time. I don't put pressure on myself to have a perfect session because I'm learning and am allowing my body to move the way it wants. Most of my sessions include aromatherapy, the twinkle lights in my dorm, and one of my favorite playlists. Even if it is only taking five minutes to flow, I notice an extreme shift in my mood after a session- I feel renewed.

 

 

In the past, I would isolate myself and push through the pressure until I would eventually crack and break down. In the moment, I may not feel like moving or pausing but I have to remind myself of how I feel afterwards and the temporary rest I am giving to my body. After I am active, I not only feel more relaxed but I feel happier and come out with a better mindset- more motivated, present focused and ready to take on the next challenge.

Stay Lovely,

Erin

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!

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 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.

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

By Erin Ard

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

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

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

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

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

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

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

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

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

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

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

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

With love,

Erin

What to Expect at a Remicade Appointment

By Leah Clark

As someone that has been using remicade for the majority of their life with #IBD, I think it's safe to say that I've got infusion days down to a science. Check out this video to see what one can expect on infusion day with remicade and read more about it down below.

When I was first diagnosed with Crohn's disease at the age of 12, my pediatrician recommended that, along with several pills including Prednisone and Pentasa (mesalamine), I start remicade infusions right away. Besides a brief few months this past year without it, I have been taking remicade ever since then. Remicade has worked wonderfully for my IBD, so much in fact that for a few years, I was able to get infusions every 11-12 weeks, instead of the regular 8 weeks. That being said, it did take several years to reach that point with no flares during that time. Now, I understand that everyone's body is different and what works for one person with IBD may not necessarily work the same for another. It's importance to listen to your body and your doctor.

As someone that was only 12 when they received their first remicade treatment, I wish that I would have been more prepared and knew what to expect. I remember my first treatment literally lasted all day because of IV complications, reactions, and a lot of tears being shed. Now that I've been going for so long, I thought it would be great to allow someone else to have that information that I was lacking on my first visit. Whether it be your first time receiving a #remicade infusion, you are going along with someone to support them during their infusion, or you're an old pro at this point, it never hurts to see someone else's experience with remicade. In the video, I go through the whole process of my infusion day, including what to wear, what to expect for vitals, and the entire unedited viewing of getting and IV and starting the medicine infusion.

Hospital visits can be scary, especially when you don't know what to expect. I hope with this, you can feel more relaxed and prepared for your next remicade infusion.

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.

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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.

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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.

 

 

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

5 Things to Know Before Flying with IBD

By Leah Clark

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

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

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

1. Know Your Surroundings

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

2. Prepare Your Own Food

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

3. Pack Medications Strategically

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

4. Choosing the Right Seat

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

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

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

5. The Day Before

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

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

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

By Erin Ard

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

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

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


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

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

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

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

A little surprise from my sweet, forever valentine.

A little surprise from my sweet, forever valentine.

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

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

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

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

With love,

Erin