What I Wish My Newly-Diagnosed Self Knew

Sitting in the patient chair, hearing your doctor say “you have Inflammatory Bowel Disease” can be terrifying and change your life in a matter of seconds. These words come with both a massive feeling of relief and validation, knowing that your symptoms are not just in your head and that you will finally receive the help you deserve. But, along with this relief, comes terrifying thoughts, too many google searches, and the realization that you will have this diagnosis for the rest of your life. Feelings such as anxiety, fear, and loneliness follow with no sense of direction. When looking back at my newly diagnosed self, I wish I could hug her and tell her everything I know now.

It‘s not your fault 

The guilt that comes with a new diagnosis is unexplainable. My mind wandered, time and time again, over what I might have done to cause my diagnosis. Was it loving toaster strudels as a kid and eating a few too many? Was I too stressed at my internship? Was it previous medications that disrupted the microbiome in my gut? The truth is, you can let your mind wander for as long as it wants, but you are NOT the reason behind your illness and you are NOT at fault. Many people, including myself, strongly believe and are determined that everything has a purpose and that everything happens for a reason. Although some may argue this belief, obsessing over what may have caused your diagnosis and blaming yourself will do nothing but harm. Inflammatory bowel disease is not the result of a bad decision or bad karma, and something that is most important to understand is that you are not to blame. Once you come to peace with your diagnosis and become confident in the unknown, you will begin to heal in ways you never have before. 

The importance of your healthcare team 

As a young adult diagnosed with Crohn’s disease, I was scared, lonely and afraid. After years of fighting for a doctor to take me seriously, I felt unworthy of receiving proper treatment and advocating for myself to my healthcare team. With help from a handful of individuals, I slowly realized that I should be looked after by healthcare professionals that listen, support, and are trustworthy. Not only does this apply to gastroenterologists, but also to other medical professionals that make up your healthcare team. If your gastroenterologist does not support you and undermines your symptoms, shop around for a new gastroenterologist that makes you feel comfortable, heard and safe. Additionally, a gastroenterologist is not the only medical professional that should be on your team. If you are able, reach out to a dietician, nutritionist, or naturopath certified in food nutrition to receive guidance on diet, food choices, vitamins, and supplements to support your health. Lastly, do not be afraid to seek out help for your mental health. The stress that comes with a new diagnosis can be extremely heavy, and for some, stress can aggravate GI symptoms and flares. The best decision I made was seeing a therapist to help me through my past traumas and transition into entering society post-diagnosis while dealing with debilitating symptoms. A wide range of healthcare professionals will allow you to thrive and succeed in ways you didn't even know were possible. Here in Canada, dieticians, nutritionists, naturopaths, and therapists are not covered by OHIP. If you do have insurance, these types of professionals are usually covered. If you are not able to cover the costs for these additional healthcare professionals, reach out to your GI to see if there are any subsidized or low-cost options available to you. Also, many universities and colleges offer free or low-cost therapists and nutrition counselling. 

Find your support group 

An Inflammatory Bowel Disease diagnosis is scary and may leave you feeling as if you need to be independent through this journey as you don’t want to burden others. Putting up a wall and pretending like you are fine is something I did more times than I should have after my diagnosis. I had such a hard time being vulnerable and admitting I was not ok. With that being said, the best thing I could have done was confide in a few trusted friends and family members. Opening up to my loved ones allowed me to feel more comfortable asking for help when it was needed and having a safe space to vent. Opening up to my support system allowed me to express my fears and challenges, gave me the opportunity to have someone join me at healthcare appointments and to also receive help when I was flaring. 

If you are located in Canada, Crohn’s and Colitis Canada not only offers regional support groups where you can meet fellow peers with IBD, but they also offer a mentorship program where you have the opportunity to be mentored by someone who is experienced in navigating the hardships of IBD. Additionally, reach out to your schools accessibility centre to find out if there are any IBD groups with individuals around your age to network with. Lastly, joining Facebook or Instagram pages that connect others with IBD is a great way to speak to people who understand what you are going through.

Grief    

As a newly diagnosed young adult, the negative feelings and thoughts of living with a chronic disease for the rest of your life can be endless. Dealing with healthcare appointments and debilitating symptoms that not many other young adults experience can leave you feeling defeated and hopeless. Something important that I have learned throughout my journey is that it’s important to sit in those feelings and take the time you need to process them. Take time to grieve your old life and the life you pictured for yourself, but also remember everything positive that this diagnosis will give you. You will be stronger, resilient, and more empathetic to those around you. You will view the world in such a way that you never have before, and you will become more intuitive with your body and mind through this journey. If your feelings of grief become overwhelming, reach out to a trusted friend, family member or a mental health professional. Although my diagnosis has been challenging to say the least, I promise you there are things my diagnosis has given me that I am beyond grateful for and I wish I was reassured of when I was newly diagnosed. 

To the newly diagnosed IBD warriors, you are amazing, resilient and strong. An unpredictable and serious diagnosis such as IBD will be challenging and difficult, but you are not alone and you never will be.

The Acceptance and Struggle of a Childhood IBD Diagnosis

Being a kid is supposed to be a whimsical experience that one treasures and wants to have back. We long for those easier, good old days. But, when you are diagnosed with Inflammatory Bowel Disease at the age of 8, those childhood hopes can get lost. 

When I was diagnosed with Crohn’s disease, I did not know what it was. I remember telling my friends and them thinking I kept saying “Crow’s disease” (granted, I did have a speech impediment). Honestly, even I couldn't fully understand what was going on with my body. I felt alone, isolated, and trapped in my body. I felt frustrated because of the lack of support I felt from my peers and the lack of communication that I could provide to the people in my life. I felt confused as to whether I was being too dramatic or if I was really as sick as I thought I was. It becomes hard to trust your body and self when—for so long—your symptoms are not understood. Still today, these emotions can flood my body when I think about my diagnosis or even have to deal with unrelated health procedures. The body has a mysterious memory intact.  

 In response to these events, I have found that I tend to forget things related to it. To be honest, pretty much everything—specifically during my diagnosis phase of life—is most often a blur. Being diagnosed as a child really made me deeply struggle with the faults of reality and mortality and sickness early on. My body is easily triggered by hospitals or doctors. Whether my response bodily or emotional, I cannot immediately make sense of it all at the time. 

I often struggle making sense of my diagnosis. Being diagnosed at such an early age, the disconnect between what was real and fake is hard. How could it have such a constant effect on my life when I forget most details surrounding it?  It can be hard when you are surrounded by so many people who have such an understanding of their diagnosis and can write such beautiful lessons they have learned when most days I do not even remember what age I was diagnosed at. It is so easy to compare journeys, thinking your IBD is not as bad as the next, or that you feel alone with it. But what we can hold is that we don't have to be positive all the time. It can be painful and we can hold both the pain and the lessons we have learned. We do not have to make sense of our diagnoses. There does not always have to be a bright side to everything and that does not make you less of anything. Everyone has their bad days, whether you see them or not. Just remember that it is okay to struggle, it's okay if not everything makes sense, and we are so happy to have you here.

Explaining Chronic Pain

This article is sponsored by Gali Health.

---

One of the most troubling and tricky feelings of the human condition is pain. It’s the body’s warning signal that something is wrong. It always seems to show up unexpectedly. It’s the world’s worst party guest. Seriously, it could at least bring a party gift, or an extra bag of chips and salsa to share. Instead, it interrupts the flow of midnight ragers and days of routine alike. Pain is the ultimate consumer. It takes, absorbs, and swells, without giving any of itself up. To make it even more complicated, pain comes in more hues, flavors, and shapes than can be counted. Pain is a universal experience, but the experience of pain is unique to each individual. 

There is round, smooth, aching pain that rolls around the body all day. There’s sharp, jagged pain that cuts, stabs, and leaves a metallic taste on the tongue. There’s pain that shapeshifts. It howls like a werewolf, then sizzles like the sting from an insect. I could go on, but the list of the types of pain is again endless. That said, living with a chronic illness like IBD means tasting an entire buffet’s worth of pain types. Despite the fact that pain is so specific, and individual, people often try to measure and compare pain. As a chronically ill individual, it can be frustrating to have your pain compared, and rationalized by others. For instance, people will often compare the abdominal pain from ulcerative colitis, or Crohn’s disease to a stomach ache. In reality, chronic pain is much different from everyday pain. 

When the pain from chronic illnesses is compared to pain from other illnesses, a large part of the context is ignored. Patients with chronic illnesses and pain have to confront pain oftentimes on a daily basis, and manage pain oftentimes without a totally effective treatment. The pain from a stomach ache, or a stubbed toe will eventually fade, and if it doesn’t, there is generally an effective treatment available. With a chronic illness, no such treatment necessarily exists. There is no timeline for recovery from the pain. Instead, it can be endless and unclear with multiple trials of various treatments required in order to find relief. In essence, chronic pain has no end deadline.

Despite this, the chronically ill often live normal lives everyday. Patients and pain sufferers go to college, go to work, and even to social events despite their pain. It’s especially important to remember this, because for all of its flavors, pain can be quite invisible. Dealing with pain is a challenge, and a burden, but millions of people around the world surmount the obstacle of pain everyday. Accommodations for patients make living with this weight easier, and enable us to be more active members in our communities. Still more work needs to be done to improve the quality of life for those dealing with pain. The compassionate way to treat the chronically ill, is the most inclusive way and the way that eliminates the disadvantages of the disabled. In the future, I hope all pain is treated with the utmost consideration and care for the individual. After all, if that was the case, there would be a lot less physical, and mental pain in this world.

---

This article is sponsored by Gali Health

Gali Health is an AI-based personal health assistant app helping people with inflammatory bowel diseases (IBD) proactively manage their condition. Gali gathers knowledge from daily interactions and health monitors to tailor support and information to your specific IBD experience.

My IBD Life - Ode to Despair

I sat down to write this article with the intent of describing some personal experiences with my family and friends during a period of progressing sickness that eventually led to surgery. It’s very hard for me to segregate various aspects of that time. I was struggling on many fronts. Everything seems so intertwined. I probably would have managed better, if the only thing I had to worry about had been my health. Sometimes, I wonder if I could live through that again. The worst parts of that period were the nights. Serially failing medications had brought me to a point where I was living with severe chronic pain and total incontinence. Every night I would go through a sequence of muffled crying, screaming, and dancing, to wither and end up on the floor like a lifeless body. I did that deliberately to tire myself out and fall asleep. Every night it was the same routine. Some nights, the urge to end it all was too strong to resist. I dreaded the nights and took up a night job to cope. I thought if I forced my mind to concentrate on a job, it would help with the pain. I’d suffocate at work, and even had “accidents” at work, despite wearing diapers. Everyone around me in my home or outside was oblivious to what I did to myself in my room in the dark. My coping mechanisms bordered on the psychotic.  I would strangulate my body parts to make them numb. I would try to substitute the pain with another kind of pain by using an excessively hot pad. The pain was too much. The blood was too much. The nights were too long. The thing that hurt more than the pain was that every medication would make a mockery of my attempts to live. Early promising results followed by a rapid decline leading to increased symptoms were a pattern. At my core, I’m not a very hopeful person. My life circumstances have molded me into a deeply introverted and pessimist personality. My mind constantly tries to simulate everything that can go wrong and I try my best to put control measures in place. With this disease though, I was helpless. I read vehemently, but I was not a doctor. I forced myself to cultivate hope with every new medication. However, I always ended up dejected. Sometimes, I felt like a bloody soldier struggling to stand straight, kneeling on the ground against his sword, and waiting for all of it to get over.

As I started reminiscing those nights, my intents changed. I wanted to describe that cycle of hope and consequent despair to someone. It resulted in me writing a poem which I’m sharing here. 

They tell me the war is over and we won.

They tell me that the night is at last, gone.

They tell me the sun’s rising on the horizon.

They tell me, they tell me it’s a new dawn.

They tell me the same things again and again.

And each time they say it, I believe them. 

I hide from my fears, behind a translucent curtain.

Weak ropes of hope bear the weight of my pain.

Soon it all comes crashing down to the ground.

And I see them again. The blood-hungry hounds.

Dread sets into me as they approach and surround.

Every inch of me bleeds. My screams resound.

And when it’s all over, I look down from the edge.

Frail, pale, broken, and defeated, after the rampage.

No antidote to my ailment, my soul feels caged.

Desperate, I am prepared to embrace the only escape.

“Stop! Don’t!” I hear a voice break the silence.

I recognize the voice. It’s them. Once again.

They praise my resilience. Talk about Providence.

Promise me there’s a reason for my existence.

They look to infuse me with hope and faith.

They tell me tales of the fierce and brave.

Why then I don’t believe what they say?

Oh! It’s because, soon after ...

They tell me the war is over and we won.

They tell me that the night is at last, gone.

They tell me the sun’s rising on the horizon.

They tell me, they tell me it’s a new dawn.

There was a time when I tried to capture my pain in words. I was better at writing then. With time, the writing started to feel like a futile exercise. The nights never went away.  Instead, I now try to repress those experiences in some corner of my brain as I have done with other traumatic incidents that I have lived through.

My doctor once told me that there were only 2 patients other than me under his care, with a severity of disease that was similar to mine. I felt sad, but then I realized it’s a good thing that more people do not go through such experiences. However, I’m sure there are enough like me in my country which has a population of 1.3 billion, but I’m not sure if everyone is as lucky as me. The mental health of patients with Inflammatory Bowel Disease has never been a priority in the Indian Healthcare system. It’s time that we begin to provide holistic support to young adults with inflammatory bowel diseases to enable them to manage this disease better and come out of the experience with as little residual trauma as possible. 

Please stay safe and take care. See you next month. :)

Thoughts on IBD in the Workplace

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

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

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

My options were: 

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

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

3. I don’t wish to answer

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

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

What have you experienced as an IBD patient because of the pandemic?

Photo by Bruno Cervera from Pexels

Today the Crohn’s and Colitis Young Adult Fellows joined together to share what they’ve experienced as an IBD patient during this global pandemic. So we asked our fellows how they have been affected by the pandemic as IBD patients and this is what they want to tell you!

---

“Thankfully, I’ve not had too many problems during the pandemic. My IBD is relatively well controlled at the moment, but I still fall in the group of people in England who are strongly recommended to stay at home, because I am immunosuppressed. Therefore, I haven’t taken any chances. I was able to get my medications delivered to the house, and I now have weekly food deliveries too - though trying to get a slot is harder than you think! My regular follow-up appointments at the hospital have been cancelled until further notice, but I am doing okay at the moment so there’s no need for their input. I have the IBD helpline and email address should I need them - but hopefully not! The only other problem I’ve had is arranging for my three-monthly vitamin B12 injection, which I’ve had for around 10 years due to malabsorption. My surgery has deemed this ‘non-essential’, and are only injecting those with consistently low levels. Clearly, I don’t fall in that category, because I’ve been on regular treatment for so long. They have suggested oral supplements which I would need to buy myself, but the problem of malabsorption - so the supplements are unlikely to be of any benefit.”

Simon Stones

“Though I am not on any immunosuppressive medication, I have felt heightened awareness of the fact that I have an autoimmune disease and an overactive immune system in general. When I realized how serious the pandemic was, my anxiety spiked not only because of the reality that was to come but regarding how many people dismissed the repercussions of proper, careful social distancing or #stayinghome. I was lucky that I was able to communicate with my GI provider and get refills of medications I use during flares and on a regular basis without having a last-minute visit. I only leave my house for essential needs such as groceries (once per week max), prescriptions or to get out of the house to exercise so I can regroup physically and mentally.”

Rachael Whittemore

“As someone who is immunosuppressed, I have been experiencing heightened anxiety because of the pandemic. I have been fortunate to work from home and have the privilege of having family nearby that can transport my groceries to me, but that being said, I still feel the fear and frustration upon seeing the news every day and knowing that there are many people who are not taking this as seriously as I feel they should. I began isolating before the quarantine was in full swing, because of my compromised immune system, and have only been in public to go to the pharmacy drive-in (while wearing a mask of course!). I am trying to channel my anxiety into healthy outlets, such as my art, to avoid prompting a stress-induced flare. All I feel that I can do at this time is stay at home.”

Lucy Laube

“As someone with IBD who’s living in a developing country, the major challenges stem from the lack of robust health infrastructure. Thankfully, I’m not in a flare and neither am I on any medication. However, I do have an ileostomy which requires constant maintenance. I have been facing difficulties in acquiring bags and other components of my ostomy. Luckily, I was able to procure a small amount of these components before the lockdown, but at an inflated rate. I’m also having difficulties procuring basic things like cotton and micropore tape. This keeps me in a constant state of anxiety. I am constantly checking apps to see if I can get the essentials at reasonable rates. Additionally, there is no easy access to any form of basic healthcare in case of an emergency, and that makes me nervous.”

Nikhil Jayswal

“To already live in a body and in a life that inherently holds so much unknown and vulnerability when it comes to my health, and to have that sense of uncertainty that constantly exists within myself now amplified throughout the world, to have that unknown intensified to this extent, has brought even more challenges and emotions to the surface. It feels like the unpredictability that comes with living life with a chronic illness has multiplied tenfold. I am immunosuppressed, and the only time I have gone anywhere except for my house or my backyard was to get blood work taken to check on my levels. While every precaution was taken in doing so, and it is a privilege to have such access, it was still an anxiety-ridden experience. I am incredibly grateful that I am not currently flaring and that I have the ability to be in contact with my GI provider through telehealth services, but I think it’s important for people to realize that IBD doesn’t just “stop” or “slow down” during a pandemic.”

Rachel Straining

“As someone who is immmunocompromised due to the medications I am on, I am always cautious of when I go out and am in large groups of people. With the pandemic, this caution has increased tenfold. I am fortunate enough to be staying with my parents right now. They go grocery shopping so that I do not have to go to the stores. I limit the number of places I have to go. When I do go out, I wear masks and gloves. I come home and immediately put my clothes in the washer and take a shower. I sanitize everything that I buy. When I’ve had to go for my infusions, I have to go through multiple check points to ensure I do not have the virus. All of my doctor appointments have been virtual. Although my health is not perfect right now, I am thankful to not be flaring like I was at this point last year, as I was in the ER every couple weeks. While the rest of the world seems to want to jump into reopening, I get anxious thinking about the ramifications of opening too soon. I cannot control how anyone else responds to this and who follows quarantine and who does not. But I can continue to do my part and stay at home.”

Samantha Rzany

“When you live with a chronic illness, you’re often forced to make compromises for your health. You have to take on a second job as the captain of your health. Since the pandemic began, navigating the healthcare system has become more difficult and uncertain. Chaos is a part of any illness that remits and flares, but when chaos is the defining state of the global world, it can cause undue stress. Personally, I’ve had to postpone doctor’s appointments, and alter my treatment plan to cope with our new reality. It’s been difficult to choose not to participate in activities I enjoy doing, like socializing with friends, but I know that I have to make sacrifices to protect my health and the lives of others. While I cannot eliminate all risk, I am trying to minimize my stress and focus on what I can control. I am taking precautions, such as wearing a mask, and going out for only essential needs. The entire experience of the past few months has brought health to the forefront of the public’s attention. I am hopeful that it will improve the public discourse on chronic illness, and lead to more resources in the health sphere. After all, public health is a collaborative effort, and not an individualistic one.”

Grady Stewart

As someone who is immunocomproised, I carry around the stress of potential sickness anxiety with me. Before the pandemic, I have always been transparent with people in my life about my need for them to stay clear of me if they are not feeling well . This advocacy that I was working on getting good at is now amplified x3. My remicade appointments have carried on, first I couldn’t bring anyone now I am allowed to and it’s back to normal. I feel isolated and lonely but thankful for my roommates who keep me company and my cousin who drives me to the grocery store. For me, it has been a major trigger to have the topic of conversation constantly be of health and healthcare. My hope is that this will bring a new normal. That together we can collectively make workplaces schools etc more accessible for all and that there is now a general awareness and understanding for the immunocompromised community.

Amy Weider

---

00-12 in 12 Months

This article is sponsored by Gali Health.

---

By Samantha Rzany

Ulcerative colitis is described as, “a chronic, inflammatory bowel disease that causes inflammation in the digestive tract”. And while most of the symptoms associated with IBD take place in the gut, some of the hardest and often most shameful ones take place elsewhere in the body. While most people know about my struggles with IBD, very few know about the subsequent issues that accompany my disease.

I’m someone who was always fairly thin and had a pretty fast metabolism. I never really struggled with my views on my body and was always pretty comfortable with my weight. I had seen numerous friends struggle with eating disorders, and while I could sympathize with them, I never really understood how someone could just stop eating. But when I started getting sick, I quickly grew to learn all of the emotions and struggles associated with eating disorders. 

I was diagnosed with ulcerative colitis on December 10, 2018, but my symptoms began long before then. Beginning around September of 2017, I began having severe stomach pains and found myself sick after nearly everything I ate. I started to try to adjust what I was eating in an attempt to see what it was that was causing such extreme pains. I saw numerous doctors who told me I was just stressed or that I had IBS and just needed to learn better management of my stress and emotions. I went to my first GI, who ran multiple tests that all came back negative. We started restricting types of foods like gluten and dairy to see if they were causing my symptoms. 

Because of the pain I was in and the limited foods I could eat, I was dropping weight pretty rapidly. I started hearing how “good” and “thin” and “healthy” I looked. People asked if I had started working out or what diet I was on. I was at my sickest, but to everyone else, I apparently looked my best. While test after test continued to come back negative and I continued to feel sicker and sicker, my weight also continued to drop. I found a sense of control in being able to choose whether or not to eat each day. People’s comments about how “good” I looked started to get to my head. I began to restrict my eating far beyond what was medically necessary to control my symptoms. 

I soon found myself to be the weight that I was when I was 13 and in 7th grade. I was shopping in the children’s section of stores and buying XS and 00 sizes in women’s. People told me I must be incredibly fit and in shape because they could see my abs, but in reality I was just so thin, that there wasn’t anything else there.

I continued getting tested for different illnesses and diseases, and the results kept coming back negative. I was angry, I was in pain, and I needed to control something in my life when everything else seemed so uncontrollable. By April of 2018, I was sickly thin. I finally admitted to myself that I needed help. I sought out a therapist that specialized in eating disorders. I worked extensively with her throughout the course of the summer. When school started back up in the fall of 2018, I was back to my normal weight and mentally doing much better. I had found a good medication that helped with my anxiety and depression and felt much more like myself. 

While my mental health was in a much better place, my physical health was still struggling. Around November, it began to plummet and, what I know now to be my IBD symptoms, got much worse. In December, I called my GI explaining my worsening symptoms and we scheduled a colonoscopy for the next week. 

The next few months after my diagnosis, I continued to get sicker. I was very limited in what I could eat, but I continued working with my therapist and we made sure I wasn’t restricting myself beyond what I needed to do for my IBD. Fast forward to March of 2019 when I was in and out of the ER multiple times a month. I was put on Prednisone for what I was told was going to be “just a couple weeks”. The prescribing doctor warned me of possible weight gain, but said that since I would only be on it for a few weeks, the 5 pounds would fall right back off. 

He was wrong. 

I was on Prednisone from March until August of 2019. And in the first two months on the medication, I gained 47 pounds. As someone recovering from an eating disorder, this was indescribably difficult for me. I found myself needing to shop in stores I had never been in before. I was wearing sizes I had been able to practically swim in just a short year ago. I went from roughly a size 2 or 4 to a size 12 in just a couple months. I had stretch marks. I had cellulite. And I was much heavier than I had ever been in my entire life. 

Over the course of the summer, I struggled hard. I found myself wanting to restrict what I ate in an attempt to lose some of the weight I was gaining from the medication. But I remained strong. I reminded myself of how much I had overcome in the past year. I reminded myself that the weight gain due to the medication was far beyond anything I could control and that restricting what I was eating wouldn’t help. I reminded myself that I was still the same strong and resilient person whether I was a size 00 or a size 12. 

When I was finally able to get off of the Prednisone and my IBD was in remission, I decided to get a tattoo to be a constant reminder of my strength. In a time when I could have so easily gone back to old habits and had every reason to feel self-conscious, I remained strong and held to the mindset I had worked so hard to get. I got a tattoo of the National Eating Disorder Awareness logo on the back of my arm as a reminder to me of how much I went through and overcame in just one short year. 

Nine months later, I have still not lost all the weight that I gained on Prednisone. It is still hard for me to look back at pictures of my normal and healthy self and wish I could look like that again. I have a bin stored away of the larger clothing I had to buy while on Prednisone in case I have to go on it again. It’s easy to look back at my life before my diagnosis and before I started getting sick and wish to go back to that time of my life. But when I look at everything I have gone through since then and everything I have worked so hard to overcome, I can’t help but be proud of the progress I have made.

---

This article is sponsored by Gali Health.

Gali Health is an AI-based personal health assistant app helping people with inflammatory bowel diseases (IBD) proactively manage their condition. Gali gathers knowledge from daily interactions and health monitors to tailor support and information to your specific IBD experience.

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.

---

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!

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.

---

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?

Cooking with Crohn's - Gluten Free Strawberry Shortcake

With the summer heat, comes the summer treats! Watch this video of CCYAN Fellow, Leah, makes a delicious gluten free strawberry shortcake following the two recipes down below. It's important to stick to your own dietary needs to feel free to accommodate the recipe to your liking!

Recipe for Shortcake

• 1 1/2 cups gluten free all purpose flour

• 2 3/4 teaspoons baking powder

• 1/4 teaspoon salt

• 2 tablespoons sugar

• 3/4 cup heavy or whipping cream

• 1 large egg

Instructions

• Preheat the oven to 450°F. Line a baking sheet with parchment paper and set it aside.

• Mix the flour, baking powder, salt, and sugar together in a large bowl.

• In a separate bowl, beat together the cream and egg. Pour the wet ingredients into the dry ingredients and mix to form a cohesive dough.

• Scoop the dough in 1 1/2-ounce balls onto the baking sheet; use the palm of your hand to gently flatten each to about 2" to 2 1/2" diameter.

• Brush the tops of the shortcakes with cream, and sprinkle with coarse white sparkling sugar.

• Bake the shortcakes for 10 to 12 minutes, until they're risen and baked all the way through; break one open to make sure.

• Remove the shortcakes from the oven, split, and top with berries and whipped cream. Store, well-wrapped, at room temperature for several days; freeze for longer storage.

https://www.kingarthurflour.com/recipes/easy-gluten-free-shortcakes-recipe

Recipe for Whipped Topping

• 1 cup (8 fluid ounces) heavy whipping cream, chilled

• 1/2 cup (58 g) confectioners’ sugar

• 8 ounces cream cheese, at room temperature

• 1 teaspoon pure vanilla extract

• 1/8 teaspoon kosher salt

Instructions

• Transfer 2 tablespoons of the cream to a small bowl and set it aside. In the bowl of a stand mixer fitted with the whisk attachment or a large bowl with a handheld mixer.

• Place the remaining cream and beat on medium-high speed until soft peaks form.

• Add the confectioners’ sugar, and continue to beat until stiff, glossy peaks form.

• Transfer the whipped cream to a separate, large bowl and place in the refrigerator to chill.

• In the same bowl, place the cream cheese, vanilla, salt and reserved 2 tablespoons cream.

• With the whisk attachment, whip the cream cheese mixture on medium-high speed until light and fluffy.

• Remove the whipped cream from the refrigerator and add half of the whipped cream mixture to the cream cheese mixture, and whisk to combine.

• Add the remaining whipped cream, and fold it into the filling carefully until combined.

https://glutenfreeonashoestring.com/gluten-free-fruit-pizza/

What to Know When You Care About Someone With Crohn’s Disease

By Erin Ard

Chronic illness can be easy to ignore if you aren't the one living with it, but when you start to see how it affects a person you care for, it can strike a cord in you too.

When you meet someone with a chronic illness, it's natural to be curious about their life. You may even feel compelled to a) make their day easier, b) ease their pain, c) see their worth, or d) just help them feel comfortable. And if you want to lift the weight of living with a disease, choose all of the above.

Having IBD myself, it is THE. MOST. AMAZING. feeling in the world having someone who wants to know more and take care of you. So I must commend you for making it as far as reading this post.. You are ONE of FEW who would stick around someone with such a debilitating disease!

This topic has been on my mind for a while now. And when I started writing, I noticed how challenging it was to explain how this disease can affect someone. Experience with IBD is so diverse and can change so fast! For instance, in this moment I would say, "You really don't need to worry about me!" Because in reality, my own Crohn's has been in remission for years with only a few minor complications and I've made big strides in accepting my disease. I can go without thinking about my Crohn’s most days, but that doesn't mean these feelings of security have always existed and won't change in the future. Maybe your person is in the same boat, still it is invaluable to know what could happen. Whether you are a friend, family member, or lover, I want to help you understand the fundamental struggles, how it can affect someone (mainly by using myself as an example), and what you can do.

The first thing to know is that every person with the disease is unique and handles it differently. Some people want to be taken care of, while others may hide their struggles from you; so it's kind of up to you to know your person - I'm sorry I don't have all the answers! Thought, I can promise that anyone with a chronic health issue does not want to be characterized by their disease nor feel like a burden. It poses a challenge to balance helping them feel better and making the disease a big deal. If they choose to let you into that part of your life, that's great! It is too easy to discredit the harm it can impose. My first piece of advice is to have an open mind. Even though you won't be able to fully understand how it affects their body, mind, and lifestyle after reading this; you can keep learning.

 Before I jump into the nitty gritty of it all, we should go back to basics. Whether you just met someone with IBD, have know about the disease for years, or have it yourself it can be helpful to know how the disease works. With Inflammatory bowel disease (IBD), our immune systems get a little confused and end up attacking the healthy tissues causing inflammation along our digestive tract. IBD is a blanket term for the two most common forms: Crohn's disease and Ulcerative colitis. There are many commonalities between individuals who live with IBD. The most common symptoms are abdominal pain, fatigue, fever, and the infamous diarrhea. IBD can be classified from mild to severe depending on symptoms, e.g. frequency of diarrhea, abdominal pain, fever, weight loss, anemia, bowel obstruction, and more! IBD itself does not limit your life expectancy, however, it can lead to some life-threatening complications. And symptoms can be kept under control with medication, thankfully, allowing people to live normal lives whilst their disease is in remission.

The day-by-day symptoms and risk for complication in combination can be very draining for someone, both physically and mentally. Not only are these symptoms tiresome in their own right, but can bring about mixed feelings - fear of flare-up recurrence or inability to find a bathroom, worry over not knowing what you can or can't eat, embarrassment of symptoms, and maybe denial of the pervasive hold it can take on your life. Even though my disease is in remission, it takes constant maintenance to feel in control of my body's health.

Much of my knowledge comes from learning about my own Crohn's symptoms and how it has impacted my day-to-day life. So I will try to describe what to look out for when caring for your person and their IBD.

---

It's a daily struggle.

IBD is a hidden illness, making it hard to understand what kind of struggles we endure because they can't be seen. If your loved one says they don't feel okay but look fine, trust them. They know their bodies better than anyone. I know for myself, every once in awhile I have shooting abdominal pains, discomfort from something I've eaten, unreliable energy levels due to fatigue, joint pain, sensitivity to temperature, and recurrent symptoms close to my Remicade infusions. Usually on bad days, I take it easy on food I prepare for myself and the activities I do.

Tip: Have patience and learn to enjoy a few more Netflix movie marathon nights than usual.

It's a love and hate relationship with food.

With Crohn's we have our own food triggers, which can be devastating to our digestive systems and send us running to the bathroom. Unfortunately for us, there is NO SINGLE ALL CURING DIET PLAN that can help us. We really just have to figure it out on our own since triggers differ from person to person. I get a lot of questions like, "Can you eat this?" "Or what can you eat?" and the answer isn't very simple. I can eat just about anything I want most days, but if I'm feeling off or it's getting close to my next infusion appointment - I take it easy on the hard to digest foods. I try to eat as healthy and balanced as I can while still getting the same sense of satisfactory indulgence as anyone else. For instance, I would love to eat an entire pan of brownies (and have gotten close a few times) but this would lead to me feeling like sh** the next day; as it would with anyone I feel. If you switch this desire I hold for brownies during a flare-up, it gets a bit more complicated and pretty much impossible. During a flare-up, however, my indulgences subside and I only crave foods that will sustain me without bringing about more harm.

Tip: Expect a mix of eating habits, since our health can change pretty fast. If they are on a strict diet plan, say gluten-free for someone with Celiac or gluten intolerance, get to know what they can and can't eat! It will be a whole lot easier for them if you have a good understanding and they can stop answering the "What can you eat?" question, at least coming from you :). A lot of people also take supplements to make up for the nutrients lost in their diet or from not being able to absorb an efficient amount through the gut. The biggest thing to understand, like with me, is that there are foods we just can’t eat AND there are foods, though you wouldn’t think so, we are still able to indulge in!

Flare-ups are hard to overcome.

When the disease is active, you'll see all of the main physical symptoms taking root. A flare-up can last several days to a few years and can limit our ability to perform daily activities; sometimes even landing people in the hospital. During my own flare-ups, my limitations were somewhat subtle. I was still able to attend school and join sports, but my performance level was not where it could have been (this became clear once I achieved remission). After school I would too often fall onto the couch, exhausted from the day. I didn't have a solid bowel movement for months. I would give up and have emotional break downs in the bathroom. I became afraid of food because my body couldn't digest it properly anymore. I missed a lot of school, plans with friends, and family get-togethers. What I did attend, I would be withdrawn, wanting to lay down or be at home. Flare-ups are very socially isolating and can force us to miss out on a lot of what makes life fun :(

Tip: Be your own person and don't feel like you need to spend every occasion we miss out on with us, because we don't want you to miss out either! If your person is not feeling 100% and tries to dip out on plans, be heartfelt and ask, "Are you sure? What is making you not want to go?" Reassure us that not every day will be a bad one. Sometimes we have to stick it out to reach the good moments. In time, when we are healthy again, we will be able to push through what limits us. And help us see the value of little things, even if it's just an evening of Cards Against Humanity  or binging The Office.

We have some tricky immune systems.

Many of us take medication to suppress our immune systems to fight inflammation. Some people may get sick more or less often, depending on their medication. When I first started Remicade, it was rare to find me sick with the common cold. However, since my dosage was increased I seem to get sick more often and have a harder time fighting the sickness off. *Insert disappointed emoji *

Tip: Help us take precautions when going out - use hand sanitizer, disinfect grocery carts, and mind your sneezes. Especially during cold and flu season! Maybe consider bringing over a box of tissues and some chicken noodle soup when these efforts fail :)

Everyone has their own self-esteem issues and insecurities.

IBD makes us feel a loss of control over our bodies (quite literally sometimes) and can indirectly cause visible changes (e.g. weight fluctuations, inflammation of the skin or eyes, mouth sores, etc.). Complications with IBD may involve j-pouch construction surgery - a major cosmetic change with added stress over maintenance and potential leakage - or bowel resections and scarring. This can also extend to social interactions, like when we have to explain why we can't eat certain foods, obsess over the details with travel plans, or being conscious of our frequent bathroom visits.

Tip: Depending on the person, procedures causing cosmetic changes may not sit very well. All that we ask is you be open and accepting of every scar or medical device. Each one tells a story of our struggles and what we had to face to find strength again.

IBD has it's own added mental health challenges.

People with IBD are at higher risk of having anxiety or depression. It is all too easy to get down on yourself when you deal with constant set-backs. With IBD, a lot of the symptoms happen behind closed doors.. Usually bathroom doors. Or in the scope of mental health, you can envision the mental wall that keeps others from seeing your thoughts, feelings, and worries.

Tip: I implore you to keep an open mind. We might need a little extra encouragement when it comes to self-worth, seeing the positive, and enjoying life when our IBD gets in the way.

---

Being available and accepting of what we deal with can make such a difference to us. Like I said before, IBD can be socially isolating and I hope this post has helped you to understand why that is. I also want to say that people with Crohn’s or Ulcerative Colitis are the strongest, most ambitious people I know. They deal with keeping their health in check while juggling school, work, friends and family, their goals, AND everything else!

Your person may or may not deal with what I've laid out. Honestly, there is way more that could be discussed on "taking care of someone with Crohn’s" than what I know. Getting to know your person with their Crohn’s lifestyle will have a learning curve. It’s going to take some time and a considerable amount of observational skills to become an expert and if you aren't sure, ask! Just know that you can't do everything for us. You can't take all the pain away or make us healthy. What you can do is keep an open and accepting mind around our abilities. Be patient with our limitations. Help us feel comfortable and emotionally supported when we miss out. And get to know our many qualities in addition to being fighters. To go even further, I respect someone willing to challenge me when I hesitate on getting out of my comfort zone.

Finally, remember to take care of yourself too. Not only can the symptoms be draining on the person with Crohn’s, but seeing your loved one endure such bodily torment could drain you as well. Take time to rest, focus on the good, and keep fighting for your person!

What advice would you give to your loved ones?

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.

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.

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 thoughts

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?

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

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!

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!

What is gluten?

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

How to read labels

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

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

What foods can I eat?

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

list could include:

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

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

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

• Protein-lean meats, chicken, eggs

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

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

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

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

But I thought gluten free foods always tasted bad?

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

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

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

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

By Erin Ard

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

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

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

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

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

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

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

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

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

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

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

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