A Disease Quartet

This article is by Vasiliki-Rafaela Vakouftsi from Greece.

Photo by cottonbro from Pexels.

My illnesses have shaped my life in ways I did not ask for or want, but it is important that I would not be who I am today without them.

My name is Vaso.

A disease quartet works non-stop to disrupt any notion of normalcy in my life. I was diagnosed with Crohn's disease at a very young age and the diagnosis of psoriasis and psoriatic arthritis followed very soon. Having come to terms with these diagnoses, I hoped that my life would return to normal.

Some years later, at the age of 25, I was diagnosed with adrenal insufficiency. Luckily I did not realize how sick I was then or maybe I subconsciously chose not to think about it. I was diagnosed with adrenal insufficiency in April 2020. No one told me exactly what caused it, I was told that this was probably an autoimmune etiology - my point, I collect them.

That day I learned that high cortisol is harmful, but low cortisol can be deadly. My diagnosis of adrenal insufficiency was not something I easily accepted and I do not think anyone had prepared me for all the upheavals it would bring into my life. It was like falling asleep and waking up in a parallel universe.

In one night, every minute of every day had changed irrevocably. Before the spring of 2020 I had not heard anything about adrenal insufficiency. I was in the hospital, thanks to the privilege of access to modern medicine, I soon had a diagnosis. But what is it like to have a diagnosis that, in a crisis, the result can be potentially fatal?

“In one night, every minute of every day had changed irrevocably.”

Looking back on the course of the diagnosis, I have a feeling of tremendous frustration. But I also remember doctors - who perhaps literally - saved my life. The literature assures that patients with adrenal insufficiency live a completely normal life. I will disagree, at least until the moment this text is written, since after my diagnosis and while receiving replacement therapy, my daily life and functionality have been significantly affected. Adrenal insufficiency had been around for several months when I was diagnosed.

I lost weight for months and I did not know why. For months I had nausea, dizziness, fatigue and many other symptoms. It has been a little over a year since I was diagnosed. I have not yet regained my functionality, but my life is probably no longer in danger, not to a serious degree at least. I have not become "normal" again, nor does the treatment work as well as I would like.

Adrenal insufficiency is a daily challenge in its management.

Every time I am confronted with an event that causes me physical or emotional stress, I ask myself: "In this situation would a healthy body produce more cortisol?". If the answer is "yes", then I take a little more hydrocortisone.

I visited several endocrinologists. Most of me left with a weight of a non-productive appointment, disappointed, I felt like I had wasted more time, that I was in the middle of nowhere again. Many times during this process I felt the "I do not know what to do with you" from the doctors in front of me.

“Many times during this process I felt the "I do not know what to do with you" from the doctors in front of me.”

All of us at some point in our lives experience an experience that defines us, what we say "changes our lives". Usually, such socially acceptable experiences are a marriage, the birth of a child and some more. For me, this crucial experience was when I was diagnosed with Crohn's Disease. The second crucial experience was the diagnosis of adrenal insufficiency, a rare diagnosis that is potentially life-threatening in a crisis, a diagnosis with a disease I had never heard of before.

I felt defeated, as if the world had suddenly stopped. Hope hit a wall with 100km/h, when the doctor said "there is nothing else we can do, you have to learn to live like this". Punch in the stomach! Whatever he said after that, I did not hear.

"Learn to live with it." What did this mean for my life?

My illnesses have shaped my life in ways I did not ask for or want, but it is important that I would not be who I am today without them.

Illness makes you re-examine your life as a whole, your priorities.

The disease leaves you naked and exposed, because anything familiar until then may be a potential enemy. The disease forces you to go deeper into your deeper layers.

I will never be healthy again and that has changed the way I look at things: my body, my health, my relationships, my work and my life. When things get tough, people tend to say, "This is going to pass." But what happens when this is never going to pass?

Homemade Indian Condiments with Lessened Ultra-Processed Ingredients

“A higher consumption of UPS products especially ultra-processed grain foods, fat, sauces and emulsifier/thickener-containing foods was associated with increased risk of CD.” – Dr. Chun-Han Lo from “Ultra-Processed Foods and Risk of Crohn’s Disease and Ulcerative Colitis” at the Digestive Disease Week 2021. Read more on the recap by CCYAN 2021 fellow, Savannah Snyder, here.

 As pointed out by Savannah, while results like this may seem obvious, actual recorded data on specific dietary patterns and their consequences on IBD are limited. This makes studies like this very important in guiding our understanding of how best to manage our unique IBD journeys.

Ever since I was diagnosed with UC, runs to grocery stores have become frustrating tasks for me. Where before I wouldn’t think twice about picking up something cool to drink in the Indian summer heat, or an easy to make pre-made meal for when I was too tired to figure out a whole meal for dinner, I now have to drag myself on through aisles and aisles of excitingly packaged ultra-processed foods. The marketing companies know exactly what they’re doing, because even with food trauma, my eyes often take a while to move along through the cereal, juice, snack and condiment rows. One of the most challenging food break-ups I have is with condiments. I LOVE condiments. Mostly because they’re so versatile and can add on so much to any dish. I especially found it, well, still find it, hard to part ways with hot sauce, but of course that’s dynamite for my body and not sustainable. After shedding some tears *cue tiny violin in the background*, I realized Indian cuisine houses a lot of homemade condiments – they show up frequently on our dinner tables. Most of these chutneys have strong and unique flavors, which can help with boredom from safe foods (if your body allows the ingredients or their substitutes). Below are three of my favorite chutneys – chosen to be as easily replicable as possible around the world, and as easily substitutable in ingredients for different diets as possible (low FODMAP, dairy-free, vegan, gluten free).

TAMARIND CHUTNEY (yields 1 cup)

 Ingredients:

Image of tamarind chutney from https://honestcooking.com/khatta-meetha-date-and-tamarind-chutney/

• 100g dried seedless tamarind OR or tamarind paste

• 4 dates OR date paste (1 tbsp) OR date syrup (2 tbsp)

• 30g jaggery OR Molasses (3 tbsp)

• 1 cup water

• salt to taste

Steps:

1. Boil seedless tamarind in water until soft. If using paste, mix with hot water till desired consistency.

2. Pass through a sieve into a medium bowl.

3. Add pitted dates/date paste/date syrup and jaggery/molasses. Blend until smooth.

4. Add salt, as per taste.

COCONUT CHUTNEY (yields 1 cup)

Ingredients:

Image of coconut chutney from https://www.vegrecipesofindia.com/coconut-chutney-recipe-coconut-chutney/

• 1 fresh coconut

• ½ cup yogurt (dairy free/lactose free as per requirements)

• ¼ cup roasted and soaked (for 1 hour) chana dal

• 1 green chili

• salt to taste

Optional tadka

• Coconut Oil (1 TSP)

• Mustard Seeds (¼ TSP)

• 1 twig curry leaves

Steps:

1. Cut coconut in small pieces/grate. Put in a blender.

2. Add the rest of the ingredients and blend.

3. For optional tadka, heat coconut oil in a pan on medium heat. When heated, add mustard seeds and curry leaves and switch off immediately.

4. Top off coconut chutney with tadka.

GREEN CHUTNEY (yields 1 cup)

Ingredients:

Image of green chutney from https://www.carveyourcraving.com/green-chutney/

• 150g fresh cilantro

• ½ lime

• 1 red onion (small)

• 3-4 cloves garlic

• 1-inch piece ginger

• 1 green chili

• salt to taste

Steps:

1. Wash cilantro thoroughly 2-3 times. Put in a blender.

2. Add sliced onion, garlic cloves, chopped ginger, green chili and blend.

3. Top with lime and salt to taste.

---

[The above-mentioned study discusses the role of UPS products in increased risk for CD but not UC. However, other studies have shown an increased risk with UC as well [1] It goes without saying, too, that a higher consumption of UPS products is associated with other illnesses not limited to IBD, and are negative for our overall wellbeing.]

1 https://pubmed.ncbi.nlm.nih.gov/34261638/

Long Term Reminders Of an Ostomy After Reversal

October 2nd was World Ostomy Day, and another reminder of the time I spent with an ileostomy. When you first get an ostomy, there is a lot of information that the doctors and the rest of the healthcare team like to give you. I remember learning about how I would feel, what to expect from recovery, what foods to eat, how to change my ostomy bag, and how to care for my stoma. All of this information was helpful in transitioning smoothly into my new role as an ostomate.  What I think is less common to discuss is how an ostomy influences your life even after reversal. While this information isn’t prioritized, I believe it is helpful to understand the subtle ways you’ll be reminded of your ostomy long after it ceases to be a part of your daily life.

Below, I share some of the realities I’ve experienced as a former ostomate. I am not too far removed from my ileostomy back in 2018, but I have a feeling these will ring true for years to come. I also want to note that I know not everybody is as fortunate as I was to have a choice in my ostomy, and I understand that the experience can be different as a result of an emergency. I hope that whether your ostomy was a pleasant experience or a poor one that I can help to prepare you for what to expect after reversal.

Scars

My current ostomy scar. Results may vary.

One of the most obvious reminders of my time as an ostomate is the scar where my stoma used to sit. That little thumbprint scar is a physical reminder of that period of my life. I’ve heard that people don’t like having scars on their body, but I wear mine proudly. To me, it represents resilience and strength. If you have an ostomy scar, I urge you to search for your own meaning and identity in your scar. When you look at it, let it remind you of how far you’ve come. Try to focus on the positive ways it has changed you, rather than the circumstances that lead you to need an ostomy in the first place.

Foods

When I had an ostomy, one of the things that my healthcare team advised me was to change my diet. In order to minimize my chances of a blockage, I was advised to limit eating too much insoluble fiber. Now, I didn’t exactly take their advice the first time, but after the tragic broccoli green bean blockage of 2018 I certainly started paying more attention. Now, years later, I still search my plate when eating green beans to make sure I haven’t paired them with too much other fiber, even though I know I would handle it fine now. It can be hard to change the diet habits you’ve built with your ostomy, but if your healthcare team tells you that you can make some swaps after your reversal then don’t be afraid to branch out!

Dreams

Now, I can honestly tell you I never expected to be reminded of my ostomy in my dreams, but it happens all the time. My dreams aren’t specifically about my ostomy, but I’ll be plodding along in dreamworld, look down, and there it is! A few theories come to mind about why this happens, but I think that it boils down to identity. When I was an ostomate, I was pretty open about sharing my ostomy with anybody who was interested. I think that this ownership made being an ostomate a core part of my identity, and now my brain still conjures the ostomate version of me in my dreams! 

Takeaways

Depending on your experience as an ostomate, reminders of your time with an ostomy could produce a variety of different emotional responses. I believe it is especially important if you had a poor experience with your ostomy to be prepared for possible reminders of that time. This will allow you to develop a plan to deal with those feelings, and even discuss solutions with a mental health professional. For others who had a better experience with their ostomy, reminders can be a fantastic opportunity to reflect on the growth you’ve made since your time with an ostomy. In either case, I hope you’ve been able to learn a bit about the different ways you might be reminded of your ostomy long after it has been reversed.

Book Recommendation: Exile and Pride: Disability, Queerness, and Liberation by Eli Clare

As I continue my journey navigating the ever-expansive world of chronic illness, I often find that I am always eager to learn more. I feel that increasing the amount of media and literature surrounding disability and chronic illness helps me understand more about myself and my personal journey. While on my search for sociological literature related to chronic illness, I stumbled across an exciting book recommendation, Exile and Pride: Disability, Queerness, and Liberation by Eli Clare. Upon getting this recommendation, I was so excited to delve into this subject matter since I have never been exposed to a book that so openly discussed disability and its intersection with many other identities.

 To put it simply, Exile and Pride is a discussion of disability politics. Writing from a place of experience, Eli engages in a vast number of topics ranging from a lack of visibility to radical queer theory. Eli forces you to question your overall sense of self (in the best way possible) and tries to expand your understanding of what it's like to live with multiple intersecting identities. Grappling with the chronically ill portion of my identity has been an interesting and challenging process; this book gave me the space to self-reflect and better understand not only the different levels of my experience with chronic illness, but my perspective of the overall world in which we navigate.

“I often feel like an impostor as I write about disability, feel that I’m not disabled enough, not grounded deeply enough in the disability community, to put these words on paper.”

---

Here are some of my favorite quotes from the book: 

“The non-disabled world is saturated with stories: stories about disabled people who engage in activities as grand as walking 2,500 miles or as mundane as learning to drive. They focus on disabled people “overcoming” our disabilities. They reinforce the superiority of the nondisabled body and mind. They turn individual disabled people, who are simply leading their lives, into symbols of inspiration.”

“Laugh and cry and tell stories. Sad stories about bodies stolen, bodies no longer here. Enraging stories about the false images, devastating lies, untold violence. Bold, brash stories about us reclaiming our bodies and changing the world.”

“I often feel like an impostor as I write about disability, feel that I’m not disabled enough, not grounded deeply enough in the disability community, to put these words on paper.”

“The body as a home, but only if it is understood that bodies are never singular, but rather haunted, strengthened, underscored by countless other bodies. The body as a home, but only if it is understood that place and community and culture burrow deep into our bones. The body as a home, but only if it is understood that language, too, lives under the skin. The body as a home, but only if it is understood that bodies can be stolen, fed lies and poison, torn away from us. The body as a home, but only if it is understood that the stolen body can be reclaimed.”

There are countless quotes in the book that are salient to the chronic illness experience. I feel like inadequacy, infantilization, and many other concepts mentioned are felt throughout much of the community. Living with ulcerative colitis is like wandering through a maze, the path will never be clear, but some parts of the journey will be less confusing than others. This book reinforced this idea. We often don't have the luxury or privilege to have access to literature specifically for our community, especially intersectional literature. If you’re looking to understand more about body identity, disability history, personal experiences, oppression, power, and liberation with a few laughs along the way, I highly recommend this book!

This article is sponsored by Connecting to Cure.

Connecting to Cure Crohn’s and Colitis is a grassroots, volunteer organization that brings together the IBD community with a focus on caregivers and families. Connecting to Cure Crohn’s & Colitis provides community and support for those coping with these chronic illnesses, while raising awareness and funds for research as well.

Healing Looks Different for Everyone

This article is by Nathalie Garcia from the United States.

Photo by Spencer Selover from Pexels.

---

It feels so strange to think just a couple of years ago, I was just a confused kid who didn’t understand their diagnosis or where it would have led me. I’ve had a lot of time to reflect on how far I’ve come in terms of healing.

I feel like something that isn’t talked about a lot is how differently we all heal. I wish I could say I navigated my chronic illness with patience and grace but it just wouldn’t be true.

Some of us heal in multiple stages, take a step backward, maybe skip a few steps forward or go in circles for some time. Somehow, I feel as though there is an expectation for those of us who are disabled to be a vision of a warrior that people without disabilities have created.

Even hearing the word healing, I picture softness, warmth, and calm. As soon as I reflect on it, I see something completely different; I see isolation, cold concrete and stiffness. To have an invisible disability is an entirely different kind of isolation I have ever felt in my life. It’s like people can see me but their eyes just pass through me.

Healing a struggle people can’t see can make you bitter. Angry. Angry at the world. Angry at yourself. Sometimes healing turns into a never ending cycle of anger and guilt for feeling so much hatred for a world who can’t possibly understand you when they cannot even see you.

At one point, healing turned into a lot of reflection and self-forgiveness. It’s strange because somehow having a warmer perspective on what disability was like for me shocked others. How can you be happy after that? I couldn’t live like that. I still don’t know how to feel about some of these words. The more I think about them, the more I realize just how hurtful they are.

Because somehow, no matter what perspective I had of my disability, I could never satisfy anyone. And that was okay.

Recognizing that maybe others were just healing differently or at different stages of healing was so incredibly comforting. It made me realize I was angry once too and that I can’t possibly know if I’m seeing right through others like they saw through me.

Healing…

Because somehow, no matter what perspective I had of my disability, I could never satisfy anyone. And that was okay.

This article is sponsored by Lyfebulb.

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

Experiencing Change with IBD

This article is by Savannah Snyder from Canada.

Photo by Nothing Ahead from Pexels.

---

My life has been changing so insanely fast – from moving out of my childhood home to school three hours away, from living with six other people to now living alone, to a new city, apartment, school, and friends. Change can be amazing – pursuing your goals, growing as a person, and finding your place in this world. But, with change, also brings feelings of anxiety, nervousness, and stress. Change and stress often wreak havoc on my body and cause my Crohn’s Disease to make noticeable little flare-ups. With change comes unknowns, and as a very organized person, this causes my mind to wander. I try to remind myself that everything happens for a reason, and if I enter this new experience with a good and hopeful attitude, I’ll have a great experience.

I moved several weeks ago and am remembering how important self-care is to ensure my body feels safe, calm, and happy. These past few weeks, I’ve noticed my stomach pains starting to increase along with feelings of fatigue and nausea. Whenever I notice negative changes with my stomach, my stress skyrockets and I become petrified that a flare will take over my life. Although I do have an upcoming doctor’s appointment to address these issues, I am focusing on caring for my body with self-care measures in the meantime. To ensure I protect my stomach at all costs and continue to nourish my body, I am treating it with insane kindness in thanks for carrying me around each day and allowing me to live a life with so much love and happiness.

Today, I’ll share some self-care tips that I have undertaken while experiencing change.

Self-Care Tips

Sleep 8+ hours

A refreshing and long sleep helps my body feel so much better. I always try to get a long sleep in once a week!

Nourishing Foods

Eat foods that help you feel your best, this differs for everyone, but I always make sure to focus on eating enough of the foods I know best settle with my sensitive stomach!

Friends and Family

Making time for talking to friends and family is so important. No matter how busy you are, having an outlet is so important. Whether that be venting, doing activities together, or just hanging out.

Journaling

Whenever I’m undergoing change, I love to pour out all my thoughts onto paper. This helps me clear my head and feel refreshed. Although I procrastinate journaling beforehand, I love how I feel afterwards.

Activities

What makes you feel good? Getting your nails done, putting on a face mask, going for a walk, or doing some yoga, whatever activity you enjoy and feel relaxed doing, do it! These activities normally switch up for me and I try to be intuitive with how my mind and body are feeling. Whether that be sometimes going for a walk or doing a yoga flow and others I’m throwing on a movie and laying on the couch in my sweats!

“To ensure I protect my stomach at all costs and continue to nourish my body, I am treating it with insane kindness in thanks for carrying me around each day and allowing me to live a life with so much love and happiness.”

Negative Body Image

This article was written by Saravanan Nagappan from Malaysia.

Photo by Ismael Sanchez from Pexels.

---

Choose to do nice things for yourself.

Care about yourself and your happiness.

Don’t let anyone judge and give unsolicited advice on how your body should be.

Surround yourself with happy things.

Believe in yourself.

Start to build your confidence.

Have you ever thought your nose looks a bit wider than it should be or felt your body could afford to gain some weight or simply thought you don’t like the shape of your toes? If you do, then you might have issues with your body image. Most people have issues with their body image and it is also true for IBD patients.

What is body image, you may ask. Body image is the way we feel, think or perceive our own body. It could be a positive or negative body image and it involves one’s weight, shape, and even individual body parts. Most often, IBD patients similar to many other people face negative body image issues. IBD, as you all know, is a life-altering diagnosis. Whoever suffers from IBD, goes through the changes in their body. They might lose weight, suffer from fatigue, experience hair loss and may even have to live with surgical scars for the rest of their life. These could create a sense of loss and dissatisfaction with one’s “new” body. Negative body image also affects your self-esteem, changes your view of a happy life, create conflicts and may lead you into a depression. Having a negative body image is detrimental to us and we need to know why it may happen and how to break out from this negative cycle.

First and foremost, a reason for negative body image is having high expectations. Although, there’s nothing innately wrong with setting up high standards for oneself, sometimes it may bring more damage than good to us. In reality, it’s not easy to achieve body perfection especially for those who are sick and are going through physical changes due to their sickness. If you need or must have a standard to feel good about your own body, then set realistic and achievable standards.

As an IBD patient, there are limitations on what your body can do and can’t do. Therefore, acknowledge the limitation and accept yourself as who you are to break out from this negative cycle. Setting up high standards will hurt you whenever you fail to achieve it. Go slow with your expectations and push up those expectations as you achieve your previous targets.

Another cause for negative body image among IBD patients is comparison. Comparing your body before and after IBD or comparing yourself with others will create negative thoughts saying that you are not the best. We often compare our own body parts or features to others who seem to have a better body. This may lead you to look down on yourself and definitely lowers your confidence and self-esteem. To break from this, you need to actively and consciously stop yourself from comparing your body. Whenever you start comparing, you need to stop and remember that it is unnecessary to do any sort of comparison because you are doing what is already best for you and your body. Try to channel the energy that you were going to spend on comparison to focus on your happiness and mental health.

Negative energy around us is another reason for us to have a negative body image. Oftentimes we are surrounded by negative energy, such as, social media, advertisements and people around us. Social media platforms and advertisements often show and idolize perfect bodies with slim features for females and sculpted bodies for males and they even show unmarred flawless skin, ideal face and body shape, healthy looking skin, hair, and etc. This allows the general population to think that perfect bodies are the only way a person should be and they should desire and achieve that perfection. People around us like our friends and relatives sometimes tend to talk about our less desirable appearance and may even give suggestions and unsolicited advice. These situations often discourage and demotivate us from being happy with the way we look. In order to break from this negativity, we should learn to turn negative energies into positive energies. One of the usual ways is to avoid or remove yourself from being in the negative surrounding. Engage with people who are always supportive of our life, encourage when we need it and recognize us as a better person. Actively avoid any kind of media that possibly makes you feel negative about your body. Surround yourself with people and things that make you happy and feel accepted as who you are now.

Self-isolation is one of the reasons you to get negative body image. Isolation processes start to happen to you when you always feel ashamed with your own appearance and slowly try to hide your body from others and like to be alone. In this case, you start to avoid any social events, public places and may avoid to go to work or school. At one point, you may even try to avoid to look at yourself in a mirror.

To stop yourself from isolation you should brave to see yourself as a whole person and avoid not to focus on specific body parts. Don’t think about what people will think about your appearances, because there is no prefect human being in this world. Appreciate what your body looks like and try to accomplish yourself by celebrating it. Go out see more people and engage with them by talking, singing, dancing, and swimming. This will build your confidence in your body.

To sum up, choose to do nice things for yourself. Care about yourself and your happiness. Don’t let anyone judge and give unsolicited advice on how your body should be. Believe in yourself, start to build your confidence and surround yourself with happy things. This will create positive energy to your life.

“Engage with people who are always supportive of our life, encourage when we need it and recognize us as a better person.”

Overcoming Fear

“I must not fear.

Fear is the mind-killer.

Fear is the little-death that brings total obliteration.

I will face my fear.

I will permit it to pass over me and through me.

And when it has gone past, I will turn the inner eye to see its path.

Where the fear has gone there will be nothing. Only I will remain."

Frank Herbert, Dune

---

It is funny how the older we get, the less “scary” the things we fear are. When I was five, I used to be afraid that dinosaurs would march down my street and come eat me and my family. I used to fear the demons in the dark, or the being abducted by strangers. As we grow older, we realize the unlikelihood of these grandiose things we feared as children actually happening. We begin to fear the realistic things we know have hurt us before or that are likely to hurt us in the future. For many of us with Inflammatory Bowel Disease, these fears center on the fear of the unknown. How long will I stay in remission? Is it food poisoning or am I starting to flare? Will my medication be shipped in time for me to take it? Can I live a normal life without my colon?

Sometimes fear comes from the unknown surrounding our medications

These past few years I’ve been afraid of a lot of things because of Crohn’s Disease. I’m afraid to look at the scale in case my weight is dropping. I am afraid to try new foods because I have a lot of food sensitivities. I am afraid of that little sharp pain I occasionally feel in the lower right part of my stomach that might mean my disease isn’t in remission. Fear can be all consuming. It can take a hold of your mind, and suppress any reason or logic that would challenge its grip. 

Fear is an instinct, which means we don’t get to choose how or when it happens. I’ve found that fear likes to act in the background. It takes over our mind when we are so focused on the source of our fear that we forget the fear itself.  The first step to overcoming fear is facing it. We have to identify and acknowledge that we are afraid. 

Once we understand that we are afraid, we must then ask: Why? It is much more than just identifying the source of fear. It is easy for me to say: “I am afraid because the last time I ate pizza I had stomach cramps” and stop there. If I continue to dig deeper, I can come up with thoughts like: 

“Am I 100% sure it was the pizza and not something else?” 

“Was the last time I had pizza when I was in a flare?”

“Am I in a better position now where things might be different?” 

“Did I get a lot of crazy toppings last time? Maybe I can try something simpler.”

“Am I willing to take the risk that pizza gives me cramps again”

Now, instead of fear, there is an informed dialog going on about the situation. It is no longer an emotional reaction, but an analysis of an event. I know the source of my fear, I understand the context, and I can make an informed decision moving forward. Fear may control the “how” or the “when”, but if we take a step back and try to understand the “why” behind our fears, we can overcome.

---

I want to circle back to the point I made earlier that a lot of the fear in Inflammatory Bowel Disease is of the unknown. There are two ways to learn something, you either do it yourself or somebody else teaches you. These are lived experiences and learned experiences. 

One of the best ways to conquer the fear of the unknown is to learn from other people’s experiences. CCYAN consists of young adults who are overflowing with experience when it comes to living with IBD. If you are afraid of how your life will look after an ostomy, talk to a current ostomate. If you are afraid of switching medications, talk to somebody who has run the gauntlet of medications. If you are afraid you are entering a flare, talk to somebody who just got out of one. 

It is so easy to feel isolated with IBD, and sometimes it feels like nobody else understands your fears. That is why it is so important to plug into groups like CCYAN and connect with people who can empathize and relate to the challenges and fears we face. You are not alone, somebody understands what you are going through. If we can identify our fears, understand the why behind them, and then connect to people who can remove the “unknown” factor, IBD can be a little less scary.

Thoughts about starting a new medicine

This article is by Vasiliki Rafaela Vakouftsi from Greece.

“How is your new medicine going?”

“It still needs time..”

Photo by Miguel Á. Padriñán from Pexels.

Starting a new drug is difficult, especially when you are trying to control a difficult disease. There is so much behind starting a drug that most people cannot think of.

First, it is scary. You hope this medicine does not interact with any of the other medicines you take - and they are a lot of medicines.

The following are the side effects. In other words, you are nervous to see if this new medicine will make you dizzy, drowsy, nauseous, etc. And, of course, there is always the possibility of more serious side effects.

Another problem is the possibility that the new medicine will not work. That’s the most difficult.

The adjustment period lasts some time before I start experiencing the benefits. It is a long way to go until things get better, where I have to remind myself that it is worth it and it will pass.

Adapting to a new medicine is difficult, but chronic illness is also difficult.

Medicines. My best friend and worst enemy. A love-hate relationship. I do not want to live with them, but I probably would not live without them.

Now for those who question western medicine and believe that all this is unnecessary and all I need are essential oils and yoga, I will stop you. I feel very lucky to have a very good medical team and a treatment plan.

Fingers crossed for my new medicine to work and for me to get a better quality of life…

Major Life Transitions: IBD and Starting Graduate School

As a young adult who lives with IBD, feeling safe and secure is almost as necessary as breathing air. Navigating the endlessly winding path of chronic illness has caused me to be more aware of my environment and how it affects me. Through this, I have come to find solace in my environment. After getting accustomed to this sense of safety, I finally found comfort. But, what happens when that sense of comfort and stability is challenged?

Recently, I just moved 500 miles away from home to attend grad school. This was probably one of the most impactful decisions I’ve ever had the privilege of making. While the process of moving for grad school is difficult for everyone, I want to emphasize the added barriers that chronically ill people face. After I received my acceptance letter from the University of Pittsburgh, I was overcome with joy. Finally seeing the fruits of my hard work, determination, and labor was extremely validating. Shortly after this period of elation, I immediately became overwhelmed with intrusive thoughts such as “Well, can I really move away from home with ulcerative colitis?”, “What happens if I flare again?”, “I don’t want to leave my doctor.” I tried to give myself space to feel my emotions, but it was still difficult. Ultimately, the decision to move was clouded by, what I like to call, health hesitation.

Not only did I have to deal with the social pressure of applying to grad school, I also had to cope with the idea of being away from my established support system. I’ve worked so hard to build meaningful relationships with my medical team, so how on earth would I manage to completely restart? Something that I found beneficial was being open and communicative with my doctors throughout the entirety of the grad school process. My GI doctor knew the second I was accepted, she knew when I took my first flight to visit campus, and she knew about every important date leading up to my departure. Being transparent allowed her to assist me with navigating insurance, finding new doctors, and recommendations. This significantly helped with my transition and it helped relieve some of my health related anxiety. For myself, stress and anxiety are triggers for my symptoms, so mitigation is salient. This emphasizes the importance of advocating for yourself and being open and honest with your doctor(s).

An important tip I would give someone moving for grad school is to be proactive about setting up doctors appointments before you move. Prior to moving, I made sure that I had the basics down, like dentist and eye doctor visits. Getting the lower priority appointments out of the way definitely eased some of my anxiety. This also extends to being proactive about finding doctors once you arrive. The process is very overwhelming, but I found that taking these steps helped mitigate some of that stress and anxiety. A second tip I would give is to check to see if the school you're attending has an on-campus pharmacy. I, like many others, have quite a few necessary medications and transferring to a new pharmacy can be a bit of an undertaking, especially when it’s out of state. For example, The University of Pittsburgh has an on campus pharmacy that takes care of insurance and the medication transfer process in a quick and efficient manner. Never hesitate to seek out local resources, especially through your campus disability resources center.

In summation, no one experience is going to be universal. We will all experience our own set of unique trials, anxieties, and stressors. With that being said, moving for grad school is a decision I will never regret. If I ever feel like second guessing myself or I get discouraged about having to restart everything, I always like to remember that this experience is an investment for my future, both professionally and personally. Always be vocal and advocate for yourself, especially when seeing new providers, give yourself space, try to quiet that health hesitancy, and enjoy your experience. If I can do it, anyone with IBD can do it. We are all capable of withstanding hardship!

This article is sponsored by Connecting to Cure.

Connecting to Cure Crohn’s and Colitis is a grassroots, volunteer organization that brings together the IBD community with a focus on caregivers and families. Connecting to Cure Crohn’s & Colitis provides community and support for those coping with these chronic illnesses, while raising awareness and funds for research as well.

LEARN MORE ABOUT CONNECTING TO CURE