Dealing with Moon Face

Dealing with Moon Face

Written by Natasha Kacharia from the United States

Featured photo by Erin Profaci from Pexels.

I never thought about myself as a superficial person. But if someone asked me about the worst part of living with ulcerative colitis, it would not be the hemorrhaging of blood, the vomit, the diarrhea, the stomach cramps, the sleepless nights, loss of muscle, or the joint pain.

It would be moonface. It would be the fat deposited on my cheeks and neck making my face appear round like the moon.

Whenever I enter a flare, my doctor prescribes me oral steroids called prednisone. Desperate for relief, I always agree and consume the prednisone without protest. A couple of the many unfortunate side effects of prednisone is weight gain and moonface. Thus, whenever I start on prednisone, I also make an effort to watch what I eat to help minimize the side effects. But it never works. And, everytime, in addition to having my clothes not fitting, my face abnormally expands, making my cheeks puffy and my pointy chin a double chin. I get moonface.

I learned to handle weight gain. I wear my classic XL Stanford Christmas sweatshirt in the winter and my oversized CS t-shirts in the summer. No, I never liked how my body looked on prednisone, but I could hide it. But how do I handle moonface? I cannot exactly cover up my face, even with a mask.

And, what my friends and family fail to understand is that it is one thing to hate your body - everyone hates their body to some extent - but to hate your face is an entirely different beast.

There is no escaping your face. Your face is what you stare at when you brush your teeth or you enter a zoom meeting. It is the first part of you that a person looks at when they meet you. Your face makes your first impression.

And moonface is not the first impression I want to make. I tell people that I used to be a nationally ranked roller skater, and they don't seem to believe me. I tell people about my past romances, and they don’t seem to believe me. To them, I look like a slightly overweight girl who fell victim to freshman fifteen, even the people who know about my ulcerative colitis do not entirely believe that my face is simply a side effect of a medication. It is not their fault. I have a hard time believing myself too. Flare me and remission me always feel like an entirely different person. A different entity.

Because the girl with moonface spends an hour long zoom meeting distracted by how puffy her cheeks are, she wears a mask everywhere - partially because she is high risk but mostly to cover up her face. She misses random guys flirting with her. She misses believing someone when they call her pretty. She misses how the world treats her because let’s face it; the world is easier to the pretty and skinny.

So, no, I never really thought about myself as superficial, but it is easier to dig deeper than the skin when you like the surface.

Communicating IBD

“‘Inflammatory bowel disease’ (IBD) sounds like a straightforward term — a disease of inflammation in the bowel. However, the history of IBD reveals a story of a nefariously complex set of idiopathic conditions. IBD defies definition, in part because its pathophysiology is not completely understood. For the same reason and despite substantial advances in research, IBD also defies cure. At best, IBD can be defined as a disease of disruption — disrupted physiology, microbiology, immunology and genetics.”1

Repeatedly, one of the challenges I face in having IBD is being able to effectively communicate the severity and uniqueness of the disease to my friends, broader society, and, at times, even myself. The quoted part above from the paper ‘A tale of two diseases: The history of inflammatory bowel disease’ articulates the complexity and vagueness perfectly.

I distinctly remember a time at school when my understanding of the world shifted from ‘adults know everything and humans have control over everything in this universe,’ to teachers starting to draw lines around exactly what is known to us. What’s left out were things even the biggest scientists who got us to the moon couldn’t decipher. During this mind shift, we learned about the limitless scope of space, the depths of the oceans, the uncertainty of what causes psychopaths, and having no cure for cancerous cells, among other things. I remember the fear but also a naïve invincibility that while these uncertainties exist, they will not be applicable to me or my loved ones. But IBD is unpredictable; it can hit almost anyone, at any age. And all the videos I saw on Facebook celebrating the new reaches of technology in healthcare – like that one video of a microcamera in a dissolvable pill helping doctors to see inside the digestive tract without invasive procedures – were just that, videos of research trials. The reality was always so much more ~simple~ with burdensome invasive procedures, like colonoscopies. 

 Medications to “manage,” not cure, IBD, are also primitive in the domain of medication, not outstanding. They always come with trade-offs – like ‘Get your colon back, but lose your bones!’ or ‘Stop bleeding, but eat like a garden rabbit for the rest of your life!’ or my personal fav, ‘Manage your illness in the gut, but leave with debilitating fatigue, brain fog, anxiety and depression! Bonus: It’s all in your head, even your doc won’t believe you.’

Living with IBD can be especially difficult due to you having to explain yourself and your situation so much. People may think you have a variant of food poisoning, or you somehow brought it on to yourself with unhealthy eating habits. The stigma about the ways in which IBD exists gives little leeway to understand the severity of it. IBD is both a hidden blessing (maybe blessing is reaching too far) and a curse, as it forces you to learn to be compassionate with yourself (that’s a big part of the closest thing we have to a cure), but shows you the irresponsibility, ignorance and pure apathy of the society around you. With cancer, for example, the pain and trauma are duly acknowledged by society. There is a sense of responsibility the society (whether that’s friends, school, work, strangers) feels to stand in solidarity and be helpful in those moments. In having a chronic illness, granted it is not cancer but still a very traumatic on-going experience, there is no assumed empathy-net provided in those dark moments.

For people like me, with social anxiety and people-pleasing tendencies, explaining the gravity of what you’re going through can be an impossibly difficult task. As I’m nearing my 5th year of having IBD, I confess I still go back and forth between playing it down to not take away from anyone or carrying resentment for people who could not understand in the past. On my best days – enjoying my iced coffee and spicy Indian food - I invalidate myself and ponder, did I really have it that bad or was it all in my head? On my worst days - on my knees, clutching my abdomen or sweating with AC at full blast at 3AM at night - I bitterly revisit the hurtful comments I’ve received over the years. Life has to go on, and in going forward, IBD patients need to build a society that holds space for them. 

Here are short notes on how I hold space for myself, and ask people around me to do the same:

1. On Badtameezi

In South Asian families, roles in a family are decided according to the age and relation. For example, a younger person, even if more experienced in a certain field, is not allowed to voice his/her opinion on some subjects; it's called badtameezi.

Badtameezi is the South Asian society’s way of manipulating you to exist in a way they deem fit. Practicing privacy, setting boundaries, cutting off from anxiety-inducing family members, and decision autonomy are just a few examples of being a “bad” person. All of the above are obviously necessary for a person with a chronic, stress-related illness, so it becomes important to choose whether you want the badtameez label and health, or tameezdar label and continuously deteriorating health.   

2. On Comparison

In the South Asian diaspora, the competitive spirit is a prominent aspect of life. India is the second most populated country on Earth, soon to be first, and resources are low, perhaps that’s why competition is high. While healthy competition is important in bringing out qualities like hard work and ambition, competition about health crosses lines over to absurdity. Yet, this is quite common. A simple “No, it’s not the same,” or “No, I feel like you’re not understanding what I am dealing with,” or “I’m very sorry you had to go through that. My illness however is very different because…” can suffice. If they’re open to it, you can open up about it more.

3. On Self-Invalidation,

It’s useful to journal during flares, not only for the benefit of your mental health, but also to keep track of your feelings on the worst days. To check in with yourself during those times makes it easier to not invalidate your experiences later on. I don’t have the discipline to keep journaling daily, but every time I am in physical pain, I do grab a pen and notebook to jot down my mental state and thoughts, and I refer back to it in times I forget what my experiences have been like. It’s also helpful to engage with a support group; the conversations around other’s experiences with triggers, symptoms, tests, doctor’s visits, work, friends and family can help you understand and navigate your own. Disclaimer though, everyone’s experiences are different in all the dimensions of the disease; your lived experiences will always be unique. Lastly, I like talking to someone who’s seen me at my worst to remind me how it really was, and that it was not all in my head. This could be a close friend or family member.

4. On Unsolicited Comments,

Just call them out on these. It’s 2021, people need to stop commenting on your weight gain/weight loss and any other changes they see in you, irrespective of whether it's due to your illness. A simple but firm statement like “If I need your opinion, I’ll ask for it,” or “I like it this way,” can help establish a boundary. 

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1 https://academic.oup.com/ecco-jcc/article/8/5/341/616781

Disability Makes Me Feel Colorful

When I was first diagnosed with Crohn’s disease, I remember hating myself. For so long, I was so angry at the world. I was angry because I couldn’t run anymore. I was angry because I was in pain. I was angry because I felt like I wasn’t capable of anything. 

The stigma of disability is often composed of beliefs that people with disabilities are too sick to do anything, are not capable, and weak. 

Years later I realized the only reason I hated myself and hated my disability was because society made me believe that having a disability was the worst thing that could have ever happened to me. 

People would frequently tell me things like I should reconsider what I wanted to do with my life because of how my illness would impact me. I have been told that it was surprising I could even do what I have done in my life. I have been told that I would be in pain forever.

I have had doctors not believe in me. I have been blamed for my illness. I have been shamed for my weight, for not eating enough, for not trying hard enough, for being too tired, for eating too much “fast food” and an endless stream of hateful and hurtful words.

Sometimes even members of my own family would shame me and suggest I caused my own illness. I think that hurt the most. 

But they could not have been any more wrong. 

Living with a disability allowed me to see my black and white world in color for the very first time. 

My disability gave me inspiration for my future career. It allowed me to realize what my true passions and dreams were. It allowed me to appreciate the smallest, tiniest things that no non-disabled person would ever be able to notice. It opened up the door for new hobbies. It empowered me to focus on my mental health. More than anything, it gave me a second chance at life. 

I live for myself now.

I started painting which is weird because I used to only be able to draw little doodles on the bottom of my notebooks. 

I do yoga when before I would over-exercise and tire out my body. 

I found out about Trader Joe’s vegan chocolate chip oatmeal cookies with coconut (only after the very serious hunt to find snacks that were IBD friendly for me).

The air tastes better. Songs are not even songs anymore; they are seven different melodies and sounds happening at the same time and I can appreciate every bit of it. Every time I take a step without pain, it makes me feel like I am walking on clouds. The sun feels warmer.

I feel colorful. 

Personally, my disability was the best thing that could have ever happened to me. It is difficult. It is painful. It is exhausting. 

But it does not make me weaker than anybody else, less capable than anybody else, and I do the same things anybody else does, and I do it while I’m sick too. 

This article is sponsored by Lyfebulb.

Lyfebulb is a patient empowerment platform, which centers around improving the lives of those impacted by chronic disease.

Ostomates and Intimate Relationships

Imagine you are in a relationship with a person and you want to take that relationship to the next  level by taking the step towards being physically intimate. You take off your shirt and you hear a  gasp. “What is that?” You look at your partner’s face and follow their gaze to your  torso and you realize something at that moment: you had never told your partner what it means to be an ostomate. Ostomates live with a part of an organ exposed outside of their body but  usually secured in an ostomy bag for the rest of their life. Although at first it is difficult to adapt to  this visible change, ostomates soon became comfortable and adapted to their routine well.  However, this new life for ostomates brings some changes to their personal life, especially to their  physical relationship with their partner. Both ostomates and their partners should take steps to understand about ostomy life and give each other the benefit of doubt to further improve their  relationship in a more intimate sense. 

An ostomate should prepare themself physically and mentally to discuss their condition with their  partner. This is important and necessary because post-surgery will bring a major change to their  body. Along with it, an ostomate may feel anxiety, fear and concern about their body. Ostomates have to express their fear and worry to their partners to alleviate their distress of this new  situation. An ostomate should understand that they can never ignore and hide their stoma from their partner forever. They should initiate small talks with their partner especially when they are ready  to engage in physical intimacy after surgery. They can talk about what happened with the surgery,  how the post-surgery life looks like, what is a stoma and how it looks like, ostomy pouch and what  it does and how they change it and so on. These small conversations will directly educate their  partner about what kind of changes an ostomate is going through and give them insights into what  being an ostomy means to their relationship. An ostomate can take the following steps in order to  engage in sexual life with their partner. 

• Take time and slowly expose the pouch and stoma to your partner. Your partner may show  reactions such as shocked, scared, or even curious. Or they may not show any reactions  as they are not sure on how to react to a stoma. They may not be sure on how to react  also. Don’t get angry or disappointed with their reaction or lack of reaction in some cases.  Most of the time, a partner will worry that they may hurt the stoma and dislodge the equipment during intercourse. Be patient and tell them how it does not affect your sexual life and how they can help you so it does not hurt during intercourse. Give your partner  more time to ensure they feel safe, secure and comfortable to be together with you. 

• Take care of your pouch. The type of pouch plays a role in ostomate sexual life. It  will be good if you wear a non-transparent pouch. Non-transparent pouch prevents your  partner from seeing the exposed stoma and the contents of your pouch. The reason is,  they might be scared to engage in sex when they see your stoma. So try a non-transparent pouch or alternatively you can buy or design your own “pouch covers”. Pouch covers can  become a fashion statement and it can make you feel good too. Additionally, ensure your pouch is empty before engaging in intercourse. This is crucial to ensure there is no leakage  or unpleasant smell during intercourse. You have to keep everything clean and neat  beforehand to make it comfortable for both yourself and your partner.

• Monitor your diet before engaging in sexual activities. See which food helps you and which  does not. A good diet can lead to an improved sexual relationship between you and your  partner. Avoid foods that create gas and odor especially beans, broccoli, corn, cabbage,  and peas. Experiment about which food causes bad reactions and gas to you and avoid  them or at least eat them sparingly. This will prevent your stoma pouch filling with gas. To  keep it safe, try to use a gas filter pouch as this will keep your pouch flat and deodorize the gas. 

An ostmate’s partner can also take several steps to ensure their relationship with their ostomate  partner is healthy and good. As ostomates, they might go through a difficult time adjusting and even fear rejection. So, as a partner, be patient and give them time. As an ostomate’s partner, you can follow  the following steps to have a better intimate relationship with them. 

• Don’t jump into a sexual relationship right after their surgery. You should remember that  ostomy is considered major surgery and your ostomate partner needs time to adjust to  their new normal. The surgery does not only put stoma outside but there is a high  possibility of bowel and fistula track removal for those who have Inflammatory Bowel  Disease (IBD). Your partner definitely need considerable amount of time to heal and gain  back strength following their surgery. 

• Be mindful of your reactions and try not to create any distance with them. Your ostomate  partner may feel rejected and feel lonely. Communication is the key solution in any issue.  If your partner does not initiate their post-surgery life, try to initiate that conversation  yourself. For instance, discuss with your partner about physical intimacy and experiment  with different positions so that they may not feel uncomfortable. Keep in mind that most stoma patients will not engage in intercourse for weeks or months after surgery. 

• Seek professional advice from sex consultants, Enterostomal Therapy (ET) nurses, or IBD  advocates to educate yourself about your partner's sexual issues. Generally,  professionals will provide solutions to improve on both you and your partners’ emotions  and also how to manage your sexual life. Professionals may not solve the core problem  for you but they will be able to provide suggestions, or solutions from their research and  work with other patients. They can also talk about your concerns, make you understand  your feelings better and give meaningful and constructive advice for you. 

Being intimate is highly possible for an ostomate and their partner if both take time with their new  situation and be supportive of each other.  Be positive and engage in activities that make you happy and healthy. When you find a new  partner, talk to them about your ostomate life and be open to answer questions honestly.  Communicating with each other about your needs, wants, concerns and fears can go a long way  in ensuring a healthy and meaningful life together.

Hair Loss

By Rachel Straining

Hair loss was something I never expected at the age of 22 until I found myself staring in the mirror, crying at my reflection. 

I knew the stomach pain. I knew the sharp, stabbing aches. I knew the nausea. I knew the fatigue. I eventually even knew the PTSD. But I didn’t know about the hair loss. 

Telogen Effluvium, they called it. It took me a while to figure out how to spell it let alone understand it. Telogen Effluvium - the medical term for temporary hair loss that occurs after your body undergoes serious stress, shock, or trauma. The words stress, shock, and trauma barely begin to cover what my body went through almost a year and a half ago. 

When two of the worst flares I’ve ever experienced happened back to back, one after the other, I lost weight rapidly. I couldn’t eat. I couldn’t sleep. I could barely breathe. I could barely even make it up the stairs without holding on to the railing for dear life and support. 

Shortly after, that’s when my hair started to fall out like I’ve never seen it fall out before. In clumps. In the shower. In my hands as I held seemingly endless strands of hair that I never thought I’d lose. 

I have always struggled with feeling beautiful in my own skin and my own being. Truthfully, growing up, I had always placed an immense amount of importance on my appearance, and my long locks had always felt like a kind of comfort blanket. “Hey, at least I have good hair,” I would say as I picked every other inch of myself apart. Watching my brittle hair fall in my boney hands as I stood in the shower with hot water and tears streaming down my face felt like the final blow to my already withering self-worth. 

I wouldn’t put my hair up. I couldn’t. Not in a bun, not in a ponytail. No matter how hot outside it was or how humid it got. If I tried to, I would immediately break down at the sight of empty, bald patches of hair that were once so full. 

Hair loss is not something that many people, especially many young adults, talk about, but it’s something I’ve come to realize that many have experienced. It is an external, physical side effect that also comes with its own host of internal, mental battles. 

You can say it’s “superficial” and you can say hair “doesn’t matter,” but when your illness continues to distort your self-image and self-confidence time and time again in ways you never thought imaginable, it is hard. It is really hard. It is traumatizing. It is difficult to fully understand unless you’ve been through it. No feelings we endure are trivial, no battles are to be invalidated. 

As someone who has gone through it herself, I am here to tell you you are allowed to feel it all, and anyone who says otherwise can come talk to me. You are allowed to be angry and sad and upset. You are allowed to cry, you are allowed to mourn what you once had, but I also want you to know that I refuse to let you give up on yourself. 

In the moments when you’re standing in front of the mirror or standing in the shower, I know how much of a battle it can be to feel good about yourself, to feel like yourself, to feel like you are complete with bare patches revealing your skin. 

However -

In a society in which it has been so wrongly ingrained and instilled that part of one’s worth is to be found in one’s physical appearance, I want you to know that your worth is not found in the hair on your head or even the freckles on your face. Your worth is found in the way you make other people smile and in the light that you bring to this world simply just by being in it.  

And yes, yes your hair will grow back as you heal. And you will heal. And healing will be a roller coaster of emotions with both mental and physical twists and turns, but the bravest thing you can do along the ride is to embrace who you are inside at every step of the way. 

The bravest thing you can ever do is choose to accept yourself every time you feel as though you can’t. 

How to Communicate Relationship Boundaries While Living With IBD: Texting Templates

By Amy Weider

I have been a sex educator going on two years now and a commonality you find between all progressive sex educator work is that there is a stress of the importance of communication. We advocate for having open and honest conversations around consent, boundaries, STI testing and much more. communicating boundaries can be intimidating and often times it makes you feel like you are coming off as needy and fear one might lose interest in you because of your needs. We must navigate the disclosure of our lives and our level of comfortability regarding different types of relationships for example, hookups, friendships,  dates, and long term relationships. communication is the key we say but many times we aren’t taught how to truly communicate our boundaries or limitations. In order to achieve successful relationships it is good to practice what we feel comfortable sharing with a person and how we want to do so. There is an Instagram sex educator @whatswrongwithmollymargaret who makes text templates for hard or nervewracking conversations. She touches on how to address being ghosted, how to ask someone on a date, and even asking a date about their accessibility needs!

I was so inspired by these posts and actions and it further made me acknowledge that communicating needs and boundaries becomes even more important when you are someone with a chronic illness. As a person with inflammatory bowel disease (IBD) my general energy levels can vary dramatically depending on the day. Because of this and my sex education work I wanted to share some of my tips and text templates for how to communicate boundaries around relationships and talking about IBD. These are all really individualized for me, a Crohn’s kid in remission who hasn't had any surgery. They obviously can be used and modified. If you have any of your favorite ways please share in the comments below.

Spoon theory

I like to introduce spoon theory very early on in my interaction with folks and continue to incorporate spoon check ins with every how are you what's up text. Spoon theory is an easy way to explain what's up with yourself without disclosing too much information about your disability/illness. It also gives me more room for an explanation of why I am canceling hook ups or dates without the interrogation of intentions or rudeness. 

“I have a chronic illness, which means my energy levels are different from those who do not have one. I start the day off with say 12 spoons when you may have an unlimited amount of spoons. So it is harder for me to do all the things that are easy for you!”

“Hey!! I just woke up and I am not feeling so hot oof. Have you heard of the spoon theory? For me, it means that I am unable to be as “productive” as others because of my chronic illness. So I like to measure my energy in spoons. Long story short I am low on them today. Anyway that we could change our date to something cute and low exposure maybe a movie and some snacks :-)”

“SPOONS LOW rip can't text you as much today as I must sleep for 10 hours lol. I will dream of you and text you when I wake up!”

Disclosing Disease

I tend to be light talking about my disease and progress towards deeper conversations around it with folks the longer I know them! Here are a few ways I have disclosed my boundaries around talking about my disease before. 

“I have Crohn’s Disease, which means my intestines and digestion can be unhappy a lot. I am in remission however though so it does not directly affect my daily life now and I don't love talking about it but hopefully one day we can get to the point where I could open up about it!!!”

“I have IBD which is inflammatory bowel disease, meaning basically because of all the inflammation I really can't digest anything. It has really affected my life and is an important topic I'm passionate about. Honestly, I'd love to talk deeper with you about it if you're down.”

“My health hasn't always been the best. I have IBD which affects my colon and I was diagnosed at a young age which affected my life. I am in remission now!! I get an IV every six weeks for a couple hours or so. I always say you know it's real when I take you to meet my nurses at the IV therapy appointments lol.

Asking for support

A big one for me is setting a boundary of disclosure transparency around when someone who I am going to see in person isn't feeling well so I do not risk my own health. I thought this was selfish for so long but I know it is not!! 

“Having IBD and being on immunosuppressant drugs means that I can easily catch a virus cold, maybe even a good lord. So if we are gonna see each other i'd honestly love it if you can just be honest with me if you aren't feeling well before we meet up. I can do the same for you if you liked!!”

The Pathway to Body Acceptance as a Chronically Ill Person

By Amy Weider

When I was in fourth grade, I was going through the symptoms of my upcoming Crohn’s diagnosis. I was young and did not understand or have the language to explain the pain my body was feeling. While Crohn’s and IBD are invisible illnesses, i.e. one does not look “sick” to a normal passer byer, my constant puking and diarrhea made me lose a significant amount of weight. As a 4th grader this was a bit alarming to my folks, but the general reaction made by my peers and adults around me was to comment on my weight loss and uplift me for it. “You look so much better now” I remember this statement so vividly from a boy in my fourth grade class. “It’s super cool that you finally decided to lose some weight,” someone said to my ten year old body. I was ecstatic to hear this. When you are growing up Femme in a world that encourages you to hate your body and only allows you to idolize those who occupy an able body that wears a size two, it is fitting that this weight loss seemed like a success to me as opposed to a signal that I was chronically ill. I could not differentiate between healthy and skinny, they meant the same to me.

“I could not differentiate between healthy and skinny, they meant the same to me.”

I internalized so many of these comments and the general societal note that any extra amount of weight made me less than. When I was put on prednisone it induced me to gain all the weight back plus more and get “moon face” as well as stunt my growth. As a formally skinny person, I was embarrassed to have this body and it forced me to endure much body dysmorphia because of the quick changes. My mind didn't understand how this was supposedly a healthier version of myself.

When I think back to this time in my life I want to give my ten year old self a big hug. Healing with the body that I inhabit is treating it with the love and respect that I so desperately needed when I was actively a sick young person. My body size continues to change today even in remission. Body dysmorphia and trauma still occupy much of my life. When I was a size two I remember constantly thinking I was fat, now a size ten I do all I can to waste no more days worrying about my size. Acknowledging sizeism and fatphobia allows me to deconstruct and actively tear down these underlooked systems of oppression that taught me to hate myself and other bodies. Today, I know that my body does not even have to be healthy, skinny or pretty for me to love it. I love the way my body takes up space. I accept that my body is sick while simultaneously being an amazing vessel that holds all my thoughts and dreams. Learning radical self love was revolutionary for me and so many others.

“Today, I know that my body does not even have to be healthy, skinny or pretty for me to love it. I love the way my body takes up space.”

People gain and lose weight for SO MANY different reasons, folks with chronic illnesses deal with a fluctuation of weight due to their medicine, hospital visits or general “sick” stress. Even deeper, any kind of body trauma can induce weight loss or gain. Sure, if you are blindly assuming someone is unhealthy because of their weight, it allows you to think very highly of yourself but when we comment on one specific part of the body not the whole person, their whole experience and all the symptoms, your comments are worthless. In general, commenting on other folks’ bodies is a baseless way to assert a dominance on others.

All bodies deserve love! The body positive movement is currently challenging the notion that one specific body is healthy and beautiful and all the other ones must conform. Folks like LIZZO, Megan Jayne Crabbe (@bodyposipanda), Iskra Lawrence, Sonya Renee Taylor (The Body Is Not An Apology) are pushing back everyday by freely and openly loving themselves as a political agenda and are encouraging others to do so as well. Folks with chronic illnesses and disabilities are at the center of this movement and are helping bring nuance and love to it.

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!

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

By Erin Ard

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

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

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

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

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

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

A little surprise from my sweet, forever valentine.

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

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

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

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

With love,

Erin