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.

Tribute to Khichdi - A South Asian IBD Comfort Food

Note: While Khichdi is regarded by many as a nutritious, can-do-no-harm food, and has existed in ancient ayurvedic literature (ancient Indian medicinal journals) as a food that cleanses and heals the digestive system, the food is not a one-stop solution to IBD, and there is always the chance that it does not suit everyone’s bodies. My views are not medically backed, as I am not a nutritionist, dietician or doctor; I talk about my journey of IBD with a food that has become dear to my heart (and tract).

Khichdi has a soft spot in the hearts of many South Asian people, not limited to just the IBD folks. It’s appeal to such a diverse diaspora over a varied amount of time is amazing but not surprising, due to its flexibility in becoming anything it’s fans desire. In India, a country with many inequalities, khichdi is a dish that can both dress up fancily as a wholesome comfort food for some, and strip down to a humble meal that provides a day of nutrition for others, becoming a unique thread that ties the polar opposite lifestyles of the rich and poor of India. It simultaneously also acts as a thread connecting the ill and healthy, with Ayurveda texts prescribing it as a staple meal as part of a larger lifestyle free from illness and pain, but is also a very popular meal outside of Ayurveda. It has its place in popular literature1, journals of travellers2, was chosen to be the main showcased food for World Food India 20173, has a dedicated restaurant to capture its varieties4, and is used widely as holy offerings in Hindu temples5. The meal has countless variations in all the states across the country, retaining its quality of being a trusty comfort food at its core, a pretty big feat considering all the various ways the states of India differ so widely.

When I first started showing symptoms of Ulcerative Colitis, among my many concerns, one big one was how my diet was going to be constricted to only khichdi. For a lot of the South Asian community, this restriction to their diet as they were diagnosed/even now when they show symptoms, is very relatable. I had observed a few years of my brother’s diet with UC before I started showing symptoms myself, and I cringed at how disciplined he was expected to be in eating bland khichdi, oftentimes for multiple meals, for days, weeks, even months at a time. My first few years of having UC, I followed the same path for the first couple of years, following treatment only in the Ayurvedic realm, which required many bland bowls of the rice meal. It’s safe to say I was sick (not the IBD way) and tired of it. It wasn’t until I was out on my own, in rural India for the first time, that I realized my need and dependence on the food I had come to rely on so much after learning to listen to my body. During my first few weeks of being in a remote village managing my flare ups, I was uncomfortable on many levels, and yet my memories shine with gratitude for the few times I was able to successfully find and/or be invited for a warm and simple meal of khichdi. It had effectively found a place in my heart as the one and only food that I could rely on, even in the remotest of places. 

Below are my recipes for a flare-up version a and normal version I like to enjoy as my go-to comfort food:

Plain Khichdi (Flare-Up Version)

Ingredients:

1 cup rice (any, preferably broken)

¾ cup lentils (yellow mung split)

7-8 cups water

1-2 Tbsp ghee (clarified butter)

½ tsp turmeric

Salt to taste

Steps:

1. Wash rice and lentils in a bowl, and add to a pot on a stove.

2. Add salt and turmeric and bring to a boil.

3. Cover and put in on a medium-high heat. It will take 15-20 minutes to cook. It’s best to keep stirring occasionally and checking to get a porridge-like consistency.

4. When cooked, pour into a bowl and add ghee on top. Enjoy!

Khichdi with Vegetables (Normal Version)

Prepare Khichdi same as above.

For the Vegetables:

Ingredients:

2 inches bottlegourd, peeled and diced

1 carrot, peeled and diced

1 green bell pepper, diced

1 tomato, medium sized, diced

1 onion, medium sized, diced

1-2 Tbsp ghee

¼ tsp garam masala

¼ tsp paprika

Salt to taste

Steps:

1. While khichdi cooks, heat up a frypan with ghee.

2. Add the onion. When the onion turns translucent, add the tomato.

3. Add salt so the tomato mushes up quicker.

4. Add the carrot and cover the pan. Keep stirring occasionally. If needed, add water to fasten the cooking.

5. When the carrot is soft, add the bottlegourd. Cover the pan and let it cook, checking from time to time.

6. After the bottlegourd is cooked as well, add the bell pepper.

7. Depending on how mushy you like you bell pepper, add your spices (garam masala and paprika) and remove from heat. Keep the pan covered for some time.

8. Plate on top of the bowl of khichdi. You can add more ghee on top as per your liking. Enjoy!

9. Khichdi is generally paired with plain yogurt in India, as well as pickles and papadum (crispy lentil chip).

1 https://www.moralstories.org/birbals-khichririce/

2 https://www.thebetterindia.com/119823/khichdi-history-brand-india-food/

3 https://seachef.com/khichdi-gets-ultimate-boost-to-be-promoted-as-brand-india-food/

4 https://khichditgf.com/

5 https://metrosaga.com/indian-temples-and-their-prasadams/

What is a Healthy Diet?

Back when I was in college, I had a professor who hated the word “healthy”. She argued that the word had no real definition. At first, I am not sure if I agreed with her. Surely it was safe to say that something like spinach was a healthy food, right? It has fiber, loads of vitamins and minerals, and is low in calories - perfect health food! As time went on, and I thought about it more and more, I discovered she was right. There really is no one definition for the word healthy, because it applies differently to each of us.

Every person has their own goals as far as their health. For a bodybuilder, gaining muscle might be considered healthy. For a sprinter, something healthy might improve their times on the track. For others, healthy is eating in a way that will help extend their life. You can see that it isn’t as simple as slapping the label “healthy” on a food and calling it a day. 

One of my favorite examples is birthdays. It doesn’t take a nutrition expert to know that birthday cake doesn’t improve physical health, but what about mental health? The goal on birthdays has never been to help you sculpt that hot summer body, but rather to celebrate with friends and family. It is a time to feel joy that we have made it another year on this Earth. If taking the birthday cake away harms that goal, well then the only conclusion I come to is that birthday cake is health food. Don’t tell anybody at the hospital I work at I just wrote that.

What about for people with IBD? What does a “healthy” diet look like for us? Having an interest in nutrition as well as IBD, I wrestle with this question a lot. I know that for the general population, foods like broccoli and brussel sprouts have been shown to reduce cancer risk, among other benefits. Therefore, they would generally be considered “health food”. But for somebody in an IBD flare, you might be better off roasting a package of nails at 350 in the oven for dinner. All that roughage is just going to result in pain and irritation as it passes through the inflamed intestine. For an individual with IBD who is in a flare, broccoli and brussel sprouts might be the furthest thing from healthy food they can eat.

That is why I think it is so important that we all understand the temporary and individual nature of the word healthy. It is not set in stone, what is healthy for you to eat today might not be healthy for you tomorrow. You should never be ashamed because you are not eating what the average person would call a “healthy” diet with this disease. That isn’t to say that you shouldn’t pay attention to diet at all. Your definition of a healthy diet will depend on your goals, which will most likely be very different from the friends, family, and coworkers you interact with on a day to day basis. Don’t compare apples to oranges. Take the time to define your health goals, and then determine what foods will help you reach those goals. Find your healthy diet.

Preparing for your GI Appointment

When your health is on the line and you have unlimited questions about your IBD flare, the anticipation to speak to your Gastroenterologist can be overwhelming. My heightened anxiety before and during my GI appointments would cause my mind to go blank the minute I sat down with my doctor. Negative or serious news can cause forgetfulness and wandering thoughts after the appointment, leading to me questioning the advice I was given. Throw the current coronavirus pandemic into the mix and things become even more complicated. Here in Canada, majority of medical appointments are now conducted over the phone contributing to a loss of connection and personable service. Medical appointments can be emotional rollercoasters, especially when receiving potentially life changing news about your illness and treatment plan. Below are four tips that will allow you to be best prepared for your medical appointments and will help minimize the stress, emotions, and feelings of frustration that may accompany the crucial medical appointments with your IBD specialist.   

Tip #1: Write down your questions 

Writing down all the questions and concerns you have before your appointment will ensure you remember to bring these topics up. Create a note in your phone or notebook ahead of your appointment and write down any questions, concerns, or notable symptoms you are having that you’d like to discuss with your doctor. Organize these questions and concerns in categories to easily hit all the topics in a simple and efficient way. Some great category suggestions: symptoms, medications, surgery, diet, accommodations, or any that work for you! Make sure you pull out your notes during your appointment and refer to each one, checking them off as you go. This will result in leaving your appointment feeling satisfied that you shared all your concerns with your GI and feel confident in your treatment plan. 

Tip #2: Bring a notebook with you 

Waiting for a medical appointment and then forgetting what the specialist said is the absolute worst feeling. Bring a notebook with you and write down any important suggestions, advice, medications, or risks your specialist speaks about. Anxiety and nerves can be high during an appointment leading to forgetfulness. If you write down quick notes about the conversation, you will be able to more easily remember the conversation afterwards and feel a sense of peace with the appointment. Not only will you have a better understanding of your treatment plan but your doctor will respect and sense the seriousness you are taking to fight your Crohn’s Disease or Ulcerative Colitis flare. 

Tip #3: Audio record the appointment 

Audio recording the conversation provides a simple and easy way to playback the conversation when you forget or want a refresher of the treatment plan your doctor provided you. This way you can easily save all your recordings to look back on in the future. Remember to ask your doctor for permission before recording! You can easily record the conversation with a recording app on your phone. 

Tip #4: Bring a friend or family member with you 

Attending a doctor appointment alone can be nerve racking and anxiety-inducing. My biggest tip is to bring a parent, a close friend or family member with you and bring them up to date on the reasons for your appointment and the questions and concerns you have. Another great idea is to give them a copy of your questions and concerns so they can speak up and ask if you forget to bring something up. Additionally, it’s always great to have someone advocating for you and your symptoms if your doctor quickly dismisses a concern you have. 

A big concern as a young adult attending a doctor appointment with a parent is that your doctor may speak directly to your parent rather than speaking directly to you. If this happens, remind your doctor that you have brought your parents with you only as support and you are responsible for your own health. Also, you can confide in your parents and remind them to ask the doctor to speak directly to you, the patient. If you find your guest is taking over the conversation, remind them that you’d like them there only as emotional support and stay quiet except when specifically needed. Outlining these expectations with your guest prior to the appointment will allow for a smoother and more successful appointment to take place. 

Whether you are currently diagnosed, in a flare or just having a check-in with your GI, these tips will allow you to maintain control and get the most out of your in-person or virtual appointment. Remember, the healthcare professional is here to help YOU. Do not feel guilty for asking numerous questions, being in-depth, writing things down, and prolonging the appointment due to concerns. 

Good luck! 

Why Malaysians Don't Talk About Their IBD

Malaysia is a beautiful and a welcoming country in Southeast-Asia. We are known for our multi-ethnic and multi-religious population living together in harmony. However, sometimes it is harder to talk about chronic illnesses as the culture and the society refrains you from talkin about negative occurrences. Illnesses are considered negative, and therefore, people with illnesses are regarded cautiously to a certain extent and they are advised to not discuss or talk about it in public. Awareness of IBD is very low among Malaysians. Many do not even know of its existence, let alone understand it. IBD patients often do not discuss their illness with anyone due to fear of not getting social acceptance, fear of rejection, and fear of losing opportunities that they deserve.

The geographical position plays an important role in social acceptance. People living in urban areas have more access to information and they often see display of information in many places. But that is not the case for those living in rural areas where information is scarce and few and far between. When IBD patients do try to talk about their illness, oftentimes, these geographical differences make it harder. Although it is easier to discuss your health issues in public for urban people, they often will choose not to do it again if the reaction was not good. As illnesses are considered negative, talking about them only brings more fear and unwanted attention. The society will think that either the patient is trying to get fame out of it, or they are imprinting fear of something that is not common. This “hiding illness” attitude causes more misunderstanding and more likely causes the patients to develop low self-esteem associated with their IBD.

Malaysians do not talk about their IBD to others due to the fear of rejection. The IBD patients fear that their family, friends, or colleagues will distance themselves if they know about their illness. The patients’ family might feel uncomfortable in discussing or even acknowledging the illness as they tend not to talk about sickness generally. Talking to colleagues is simply averted for the same reasons too. The fear of social rejection is very strong among IBD patients as their very own body is against them and this trauma alone could lead IBD patients to not open-up to others.

Fear of losing opportunity is another reason for IBD patients for not discussing their health issue with anyone, especially to a potential employer. They fear that they might not be able to get a job because of their chronic illness. Potential employers will hesitate to employ a person with illness which may cause them to take leave at unexpected times.. Many Malaysians do not disclose their sickness because they are worried to lose the opportunity that they deserve, therefore, they are not willing to disclose their sickness with their future employers during job interviews.

IBD patients in Malaysia fear not getting acknowledged socially, rejections of loved ones and of lost opportunities. It causes them not to talk about their IBD very casually to anyone. It is a very real health issue that needs to be talked about. Support groups are the first step Malaysian IBD patients have taken to make this disease more known and to assist each other’s. More and more people, especially the younger generations, are getting this disease in Malaysia now compared to a decade ago. Therefore, an accepting society is needed. I hope more people are open to understanding and accepting our differences. We might not have the best health condition but we are real and we exist!

Invisibile Disabilities

When we hear the word disability, our mind goes to a wheelchair, mobility problems, deformities and everything else obvious.

But is disability always visible?

The answer is no. Disability is not always visible.

Society's prejudice and stereotypes about disability want the individual to show obvious signs of disability. Inadequate information, distorted perception and misinformation perpetuate these stereotypes. People with chronic diseases, such as some autoimmune diseases, but also other diseases, often have nothing in their appearance that openly displays their disability.However, people with these diseases experience a form of disability, vital functions of their body are affected and their lifestyle is shaped accordingly. The professional status of the individual and / or his socialization and integration into society can also be affected. They depend on expensive treatments, they need several hospitalizations, surgeries, etc.And as if that were not enough, they have to fight a battle as "invisible" in a society full of prejudices and stereotypes, a society that discriminates against their disability.

I do not think there is anyone who does not want to be healthy; everyday life is hard in a society that daily degrades your dignity. Almost every day you have to prove yourself, and explain again and again..because you have an invisible disability. And to be treated in the worst way, because you do not fit the mold they have as a given.

Is the state responsible for this situation? Of course state has a great responsibility.It is the state that has the obligation to educate and sensitize the citizens about the various forms of disability, to cultivate mutual respect. It is the state that has the obligation to ensure the conditions for the integration of people with disabilities in society, to give people with disabilities equal opportunities for education and work, insurance and care. And above all, the state is the one that, in the difficult economic and social conditions in which we live, has a DEBT to protect people with disabilities and to defend their rights.

People with disabilities do not ask for sadness and pity, they ask for equal treatment.

But let's start with something basic: Let us not judge others by their appearance. We never know what battle they are fighting and what is hidden behind their appearance and their smile.

Calling in Sick and IBD

Hustle culture - committing your life to your job and career - has become normalized and even expected in young adults. After graduating university, many find their self worth linked to their career, earning promotions, competing with coworkers, and impressing your boss. As a twenty something year old with Inflammatory Bowel Disease, the struggle to balance work with your health is never ending. 

Those with a chronic illness understand not to take life for granted and that each day can be as unpredictable as the next, but we often forget this and get caught up in prioritizing a career over our own health and wellbeing. Calling in sick to work is inevitable, everyone has to do it at some point in their lives, whether it’s for a mental health day, the flu, or a flare-up. Yet, there are so many negative stigmas around missing work and around prioritizing your body. 

The feelings of guilt that come with calling in sick to nurture your body, whether you see your body deteriorating, know a flare is coming, or if a flare comes out of the blue, can be overwhelming. The stigma associated with hustle culture and calling in sick can feel disheartening. I have always had a hard time taking a sick day, and I always felt like I was letting my boss and coworkers down and that I wasn’t worthy of employment. Intense feelings of frustration and annoyance invaded my mind when debating whether to call in sick and these intrusive thoughts caused my body more stressors on top of being physically ill. I often remind myself that prioritizing my body is my number one job. Without my health, I wouldn’t have a job and I wouldn’t be able to participate in all the amazing experiences life has to offer. 

A helpful comparison to calling in sick is the safety instructions reviewed when boarding a flight, right before take off. The flight attendant always reviews the emergency instructions, stating that if the plane were to lose oxygen, you are always to put on your own oxygen mask before helping someone else. Putting yourself first will enable you to not only succeed at your job, but also to succeed in other aspects of life. If you were to ignore your body’s signals that you need rest, you will become more sick and risk the most important thing, your health. 

You are not weak, undeserving, or less important than your colleagues and friends because you need to call in sick more often than the average person. You are strong, resilient, and brave. We battle a viciously unpredictable disease that many do not understand. Do not let your worth be measured by whether you call in sick. I challenge you to listen to your body and honour what your body is saying, you never know how far you will fly until you respect and love yourself and with that includes respecting your body’s limits. 

Recently, I took two sick days at work due to a small flare up and my boss and coworkers were overly supportive. Although feelings of guilt surfaced when I was making this decision, the second I returned to work, everyone showed how much they cared about my wellbeing.

If you are experiencing toxicity in the workplace, contact the Human Resources department. If your company does not have a HR department, set up a meeting with your boss or manager. If you continue to be pressured to not take sick days, to put your job before your health, this may be time to look for another job and boss that cares about you and allows you to put your health first. 

On this note, being able to call in sick has undeniable privilege. Many people across the world are unable to call in sick without suffering financially or being penalized at work. Openly having these hard conversations during the hiring process or with your HR department will contribute to breaking the stigma and providing accommodations for those that are chronically ill. It’s important to speak with your boss or HR representatives regarding sick leave, paid sick days, and working from home options. Speak up to your government representatives and express the need for a handful of mandatory paid sick days across your province or state.

The Power of Music

I still remember the first time I listened to the song Where’d You Go by Fort Minor. It was June of 2016, and I had just recently been diagnosed with Crohn’s disease and finished my last semester of high school. It had been a semester of overcoming pain and fatigue to drag the shell of my body across the high school finish line. With those less than stellar circumstances, I was overcome with emotion hearing the lyrics describe in words exactly how I was feeling: 

She said "Some days I feel like sh**,

Some days I wanna quit, and just be normal for a bit,"

 I cried then, and I still tear up occasionally listening to the song and thinking back on that period of my life. That is the power of music, the ability of the songwriter to share their feelings in a way that connects with another human. It grants the comfort of knowing that others have experienced the same things you are experiencing now. That can be powerful for those of us with IBD, because it can be so easy to feel isolated and alone in our struggles. 

Today, I want to take you through some songs I feel reflect the IBD experience for me. I encourage you to listen through the links as you read.

One song I keep going back to is Times Like These by Eden Project. The first verse starts out with what a lot of us feel sometimes:

It's been a long, long time

We've come a long, long way

No, I can't see the finish line, scared half to death, but that's okay

It's been a long, long night

After a long, long day

My body's aching, but I know somehow, my feet will find a way

I don’t know about y’all, but I can think of at least a dozen times I felt like this with my IBD. It can be so hard to try to imagine the finish line when the reality of your disease forces you to acknowledge the present instead of looking toward the future. And that is scary. When day and night you are exhausted just putting in the bare minimum effort, you can forget to look at the big picture. I don’t even have to tell you how much I relate to the body aching line. But the great part about this song is that it doesn’t end there. Near the end, the artist sings:

These are the times we will hold

In the silence, when I've given all of me

And it's alright that it's over

And I found fight, like a soldier coming home

In the silence, but I have never felt so free

The future's so bright, this is our time

And I'll live it how I dream

It is beautiful how the artist not only changes the lyrics to reflect the hope, but if you listen, the entire mood of the song changes as well. The tempo speeds up, the instruments are cheery, and there is a joy in the tone of the singer. I know when I had flares in the past, it didn’t feel like a time in my life worth remembering. But I do look back on those times in my life now and see how they shaped my future. I see how I was supported and loved by family and friends, and how it gave me a feeling of gratitude for every new day on Earth. Some days you won’t be able to see the finish line, but eventually you’ll look to the future and it will be so bright.

Another song I feel encapsulates the IBD experience is Mountain at My Gates by Foals. It starts out with this verse:

I see a mountain at my gates

I see it more and more each day

What I give, it takes away

Whether I go or when I stay

Doesn’t that just sound like the IBD experience? We have this mountain of IBD in front of us, and sometimes it feels like it takes away everything from our lives. The beautiful thing about this song is it is about overcoming that mountain. The second to last verse goes like this:

Oh, when I come to climb

Show me the mountain so far behind

Yeah, it's farther away

Its shadow gets smaller day after day

Sometimes our disease can just feel impossible to overcome. But one day we will come to climb, and we will have realized we have conquered that mountain. We will look back, and see all that we have accomplished. Whether it is overcoming a flare, graduating college, or just taking a shower this morning, we all have mountains ahead of us that are made more difficult to climb by our disease. That just makes the view that much better once we reach the top.

Please leave a comment with any song you felt has been an integral part of your IBD journey, I would love to give it a listen.

Overcoming Medical Trauma with IBD

I have anxiety. 

I am afraid to speak up, almost all the time.

I press my nails hard into my palms when I think about why I said “How are you?” too quietly. 

I bring this up because about one year ago, I had an allergic reaction to an infusion. I had been on this infusion for several months, almost a year at the time. At first, I stayed quiet about the symptoms I had been feeling for a couple of weeks leading up to it.

I think a part of me genuinely thought it was in my head. When people around you are constantly telling you your illness is your fault or that you look fine or that your symptoms are just your anxiety, you start to believe it. 

It started with red, blotchy spots all over my skin. Some days were worse than others and eventually, I went to see a dermatologist who prescribed me a topical medication and I didn’t think anything of it except for the occasional feeling of shame when the spots became more visible. 

At the infusion before my reaction, I remember just thirty minutes into it, I felt so sick. I could hear my heartbeat in my ears and everything felt slow. I remember trying to explain that I wasn’t feeling well and then downplayed it for just being tired because I’m used to doing that.

At my next appointment, the same thing happened. I started to cough and my lungs and throat felt itchy. I felt little ants all over me, starting at my feet all the way up to my chest. I stayed quiet still because I thought I was just making it up in my head until my nurse pointed out that I looked a little flushed. 

When I got up to go to the bathroom to check it out, with the IV machine trailing behind me, I stared at the mirror in absolute shock when I saw welts the size of quarters flooding my skin and hives spreading quickly across my chest and neck. My mother who was with me became panicked and called the nurse who immediately notified the doctor. 

I remember I started laughing hysterically because I was so afraid. The nurse quickly started Benadryl through my IV and I was just shaking because I felt so cold. The doctor was asking clarifying questions but they just sounded like echoes in my head. Eventually, the reaction subsided and I just layed there, stiff, with anxiety. 

What I didn’t know was that ever since that day, anytime I go to an infusion or take one of my medications I am so afraid of it happening again. I got lucky that my nurse noticed something was wrong before it was too late, but I can’t help but wonder if I had just spoken up earlier I could have avoided all of this in the first place.

But I want to stress that it is not your fault for not speaking up. Sometimes it can feel like anxiety is taking control over your life but every day you struggle with anxiety and still choose life, you are the one taking control of your life. 

I don’t feel guilty anymore for not speaking up then but now I understand that I deserve to speak up for myself now. I deserve to be heard. When it comes to your health, it is never just in your head. What I mean by that is whatever symptom you are feeling-- whether it be a physical manifestation of anxiety, racing thoughts, pain, discomfort-- those are all valid and not imaginative. 

The next time you feel too anxious to speak up, just remember that you deserve to be heard. 

This article is sponsored by Lyfebulb.

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

Caregivers: Spotlit in the Shadows

Recently, one of HONY’s long (12-part) post blew up, allowing another miracle to be added to the community’s ever-growing testament to human generosity and compassion. The posts follow the journey of Cristy’s Kitchen, through Cristy’s life, roles and perspective. A mother to 5 girls, she started experimenting with food recipes only when her first daughter started showing autoimmune illness signs as a teenager. It’s been made clear from her story that she first started her recipes, which have since garnered significant attention from many people all over the world, only because she wanted to help her daughters with their illnesses. Her life and actions speak of love, grit, determination, hope and faith, and I think some of us, as patients of autoimmune diseases, can relate to having people like her in our own lives, carrying us in our darkest moments.

 Caregivers undoubtedly play an immense role in a patient’s life. It can be argued that for chronic conditions like IBD, personal relationships with family, friends and significant others can ultimately only last if the relations juggle their roles between being caregivers and their normal roles (father, mother, sibling, significant other, friend). The mix of the uncertain characteristics of chronic autoimmune conditions with the current overburdened healthcare systems across the globe, caregivers are the ultimate backbone that help people survive not only through the physical realities, but also through the psychological, emotional, and financial turmoil. Yet for all we say about invisible diseases, not much is said about this significant invisible labor. Caregivers not only help us, patients, but are the unacknowledged help to doctors and hospitals, when they help buy time for diagnosis, and take our rollercoaster up-and-down rides with us.

  Caregivers: A South Asian Context

Generally, in south Asian communities, mothers already shoulder the huge burden of bringing up children and caring for their wellbeing, oftentimes even at the cost of their own health. For young adults with IBD in India, the role of the mother as a prominent caregiver is heightened and intensified for two main reasons: (1) overburdened private and public healthcare systems, (2) lack of mental health normalization and support infrastructure. It is also important to acknowledge, however, that prominent caregivers can also be fathers, older siblings and other family members just as much as mothers. It is normalized to blame these caregivers, more often than not mothers, for any “defects” that a child may have, whether that is due to the child not adhering to the community’s rules, or because the child is unable to perform in a way that the community deems fit. IBD and autoimmune conditions from a south Asian lens is widely considered a fault, and one that cannot be tolerated to come out of nothing, leading to further the idea of blaming the mother for not doing enough and/or failing to stop the illness. However, as patients, we eventually come to accept and acknowledge the curious nature of autoimmune diseases (that they cannot be predicted, nor caused or solved), and we witness not only our grit during hopeless times, but also frequently, the origin of that: the love, grit and hope our caregivers show. To have that labor and foundational support go unwitnessed and unpaid by the world around us is one thing, but hearing negative comments that place blame and point fingers is another. 

In my personal circumstances, my mother was the first person I revealed my symptoms to, the only person to accompany me to every doctor’s appointment and lab appointment, and stayed awake with me on countless nights as I turmoiled through the pain and bathroom visits during my flare ups. She outstandingly also showed up when I took the decision to spend a year in rural India, with limited and chaotic bathroom, food and water provisions, riddled me through my bursts of insecurity, and stood as an unwavering pillar of physical and emotional support when I was hospitalized. I can say for certain that I only survived ulcerative colitis and my year in rural India because of her. In my sibling’s case, my father went above and beyond being his main caregiver, and at times, mine too. And yet, while I try to distance myself repeatedly from the guilt of having an illness that has no clear cause, I also deal with people blaming my parents, trying their hardest to find a recipient for the blame. It is heartbreaking.

 These comments not only arise from common people, but can also show up in the tone and words from well-educated and trustworthy people, like doctors. While it may seem that the above actions are on the list of expected actions that a mother/caregiver has to carry out, it is important to highlight that it is absolutely not necessary and still constitutes labor and time that could be used elsewhere in return for payment. Additionally, from a productive economy/labor perspective, IBD patients are almost only “productive” to the economy due to the invisible support of their caregivers. This is yet another reason that begs policymakers over the globe to consider the unique circumstances of patients of chronic autoimmune diseases and recognize the unbeatable power of caregivers in their fight.

10 Things to Know If You're Recently Diagnosed with IBD

Newly diagnosed with IBD? I wish you knew these first.   

Growing up as a teenager, I was a perfectly healthy child. I ate regularly; I was active and a bright kid who never had any particular routine or lifestyle that I used to follow. But everything started turning upside down once I started seeing symptoms. An bigger tragedy was when I almost felt like the game had ended after being diagnosed. No! Not at all. The actual game starts only after the diagnosis. Our bodies are always changing with IBD. From one day to the next, we don’t know how we are going to feel or what is going to happen. So it is of the upmost importance to know yourself and your body first. Ignorance certainly isn’t bliss here. If you feel like IBD is ruling your life, it’s time to take back the control. Here are the 10 things which I would like to share with all those who are newly diagnosed with IBD:

1. Educate yourself: Knowledge is power. Understanding IBD leaves you better equipped and empowered to manage it. There are many patients out there without enough knowledge about their IBD. It’s our responsibility to know everything we can about our disease and also our bodies. Take the time to learn everything you can. Read and discuss as much as possible with your doctors. 

2. Track your symptoms and triggers: Learn about your own symptoms and triggers. Many doctors suggest maintaining a food diary so that your doctor may be able to use the data you gathered to help guide your treatment plan. We can understand our daily life and limit what happens to us by doing this. 

3. Never miss your regular follow ups: After reaching my first remission, I assumed I was completely cured and had stopped my regular check-ups and follow ups with my doctor. The penalty for being so ignorant came with a cost of having the next severe flare up within the next few months which completely drained me and pulled me back to square one. IBD is a disease which needs to be managed and if you feel symptom free, you are not cured, it’s just that your medicines are working and controlling your symptoms. So it is important to have regular consultations with your doctor and monitor the functioning of your systems. 

4. Make every appointment count: Be well prepared as to what you need to discuss with your doctor before hand as most of the appointments will be limited to 10-15 minutes and you tend to lose out on discussing important stuff. You can even jot down pointers on paper before entering the doctor's cabin. 

5. Don't be afraid to ask for more information: The time slot allotted for each appointment may be limited. That doesn't mean you need to limit your queries and clarifications. Make the best of that limited time. For instance, if you’re being treated with steroids, ask for detailed information about how this medication could influence how you feel, the side effects, mood swings, weight gain, and such.

6. Know your treatment: First, know what kind of treatment the doctor has put you on. Whether it is the traditional treatment or biologics or allopathy or any other alternative therapies. Understanding your treatment can help you know what is happening to your body and analyse your recovery rate to attain symptom free life by choosing the best that suits your body as what suits others may not you and vice versa.  

7. Emotional health is equally important as your physical health: There could be days when your entire body hurts and there is nothing you can do. There could even be days when you don’t even want to move because you are so exhausted. During those days it’s not easy to control your emotions as you tend to feel more low and helpless. But you can still fight back by choosing to feel “it's OK”. Don’t let your IBD control you.

8. Coping with Stress: Stress doesn’t cause IBD, but it can sometimes make symptoms worse. Stress relief is crucial if stress provokes your flare-ups. Learning how to cope with stress and anxiety isn’t always easy. But it’s really important for us to keep stress under control. Yoga, meditation and music could be a few tools that may be helpful in this. 

9. Reach out for help when needed: IBD can be an embarrassing disease. It’s normal to feel alone sometimes. At a young age, we are taught not to discuss what happens behind a bathroom door. This can leave those of us with IBD, feeling extremely isolated and even hopeless. This can impact our self-esteem and quality of life. It's utmost important to have some go to people who understand these challenges and support us in every step of our journey. 

10. Nutrition matters: Understand how your system works and choose what goes into it rightly. When the intestine is under attack, it has a hard time absorbing nutrients. Therefore it's important for us to be aware of what we eat. Follow a low residue diet to relieve abdominal pain and diarrhea. If you have strictures, it is especially important to avoid nuts, seeds, beans and kernels. 

These are few of the things which I feel we need to keep in mind and plan our lifestyle when newly diagnosed. Knowing these pointers at the initial stages makes our lives much easier.  

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.

IBD, Mental Health, and Diet

Have you ever had a gut feeling before? Maybe you’ve had butterflies in your stomach when taking a risk, or felt something in the pit of your stomach when receiving bad news. Are these just idioms, or is there something else there? On my journey to become a registered dietitian, the connection between food and physical health is a common theme. Something we talk about much less is the connection between food and mental health. While Inflammatory Bowel Disease (IBD) is often thought of as a physical disease, the mental impact cannot be ignored. In my opinion, we don’t talk enough about the IBD and mental health connection, and we certainly don’t talk enough about how food can play a role in this aspect of our disease.

Mental Health and Gut Health

What does gut health have to do with mental health? Strap on your helmet, it's time for a crash course in the connection between gut health and the brain. The gut has over 500 million nerves, which serve as a two way communication system with the brain. If your gut isn’t happy, you better believe it is going to let its good friend the brain know about it. Our guts are also responsible for producing neurotransmitters, which help to regulate physical and mental functions of the body. One important neurotransmitter that regulates mood, serotonin, is produced 95% in the intestines! Another one, GABA, can be produced by the friendly bacteria in the gut, and can help reduce feelings of anxiety, depression, and fear.

Mental Health and IBD

As you can see, the gut and the brain are basically best buds. But what does that mean for people whose guts are broken more frequently than the McDonalds ice cream machine? Unfortunately, IBD patients are at an increased risk for developing anxiety and depression, and frankly, can you blame us? We are forced to bear the burden of a lifelong chronic disease, often being diagnosed during some of the most mentally vulnerable stages of our lives. High school is hard enough without explaining why you spend half of every class in the bathroom. It might seem like the connection between intestinal health and brain health is bad news, but there is a silver lining. If we can change the health of our gut, we can change the health of our brain.

Diet and Mental Health in Healthy Individuals

In healthy individuals, certain diets have been shown to increase feelings of wellbeing, reduce feelings of depression, and improve psychological health. Both individual foods such as fruits and vegetables, as well as dietary patterns such as the mediterranean diet, have been linked to these benefits. Some foods are also associated with worse mental health. Sugar has been linked with mood disorders and depression. Excess sugar consumption is also associated with dysbiosis, a shift in the composition of the gut bacteria from helpful to harmful species.

Diet and Mental Health in IBD

In a study presented at Digestive Disease Week 2020, researchers categorized IBD patients into two groups, a high sugar group (>100 grams per day) and a low sugar group (<100 grams per day). They found that those in the high sugar group had increased feelings of fatigue, trouble with social engagement, feelings of depression, and trouble relaxing compared to IBD patients in the low sugar group.

It is important to note that sugar containing whole foods such as fruit have been strongly linked to positive health outcomes, and should be considered differently than sugars from processed foods. Added sugars from processed foods such as soda or candy are associated with an unhealthy gut, and worse overall health.

I think this is such an important study, not only because it has practical implications for IBD patients, but also because it opens doors for patients to take control of their own mental health. I don’t think I've ever had a conversation with any GI doctor about mental health, despite the increased risk we carry with IBD. Until that changes, it is reassuring to know that we have the option to eat in a way that is associated with good gut health, and therefore good mental health.

References

Choi K, Chun J, Han K, et al. Risk of Anxiety and Depression in Patients with Inflammatory Bowel Disease: A Nationwide, Population-Based Study. J Clin Med. 2019;8(5):654. Published 2019 May 10. doi:10.3390/jcm8050654

Knüppel, A., Shipley, M.J., Llewellyn, C.H. et al. Sugar intake from sweet food and beverages, common mental disorder and depression: prospective findings from the Whitehall II study. Sci Rep 7, 6287 (2017). https://doi.org/10.1038/s41598-017-05649-7

Stranges S, Samaraweera PC, Taggart F, Kandala NB, Stewart-Brown S. Major health-related behaviours and mental well-being in the general population: the Health Survey for England. BMJ Open. 2014;4(9):e005878. Published 2014 Sep 19. doi:10.1136/bmjopen-2014-005878

Parletta N, Zarnowiecki D, Cho J, et al. A Mediterranean-style dietary intervention supplemented with fish oil improves diet quality and mental health in people with depression: A randomized controlled trial (HELFIMED). Nutr Neurosci. 2019;22(7):474-487. doi:10.1080/1028415X.2017.1411320

Brown K, DeCoffe D, Molcan E, Gibson DL. Diet-induced dysbiosis of the intestinal microbiota and the effects on immunity and disease [published correction appears in Nutrients. 2012 Oct;4(11)1552-3]. Nutrients. 2012;4(8):1095-1119. doi:10.3390/nu4081095

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 Patient-Doctor Relationship

Why is a good relationship with the doctor important for patients?

Have you ever considered how your relationship with you doctor affects your health?

“There is no cure. Only control of the disease symptoms”. How many times have you heard this? How harsh does it sound, especially the first time?  

Are you ready to build a new relationship, a completely different relationship with your doctor? This relationship will be unlike any other relationship and certainly no one has experienced it again until the time of diagnosis. 

This is a long-term relationship that will evolve over time. Your doctor will know many things about your personal life, your job, your family, etc. Above all, however, over time, he or she will learn YOU, and your personality. 

And why this is important?

As a patient you have to break down the wall around you and allow the doctor to enter your world, the world of your disease and how you experience it, even for a while. Of course, the doctor must have the empathy required for that.

This will not happen overnight. It may take years to build this relationship. As this relationship begins to build, you will feel the doctor as a member of your family, you will share with him or her important moments. 

Is always the relationship between patient and doctor like that?

Unfortunately, no - however, I deeply appreciate those doctors who patiently and carefully support patients with chronic diseases. It’s nice to see a person being 100% present.

Journaling with IBD: A Focus on Mental Health

During 2020’s intermittent quarantine, what has brought me more solace than anything is the act of journaling. As someone who was diagnosed with Crohn’s disease during the pandemic, much of my hospital experience was drastically different than others. Increasingly isolated from my loved ones, I could feel the weight of my diagnosis crushing me, the four walls of my hospital single closing in. 

For IBD patients specifically, mental health is tied so closely to our physical health. I’ve had days where my physical flare-ups make me double over; it’s no coincidence that those same days, my mood swings and sensitivity levels are out of control. In fact, this phenomenon is so common that there’s an actual term for it: the gut-brain connection. 

The gut-brain connection refers to how changes in our gut can have drastic impacts on how we feel and behave. Many tend to dichotomize our bodily systems, finding it hard to believe that our behaviors and moods can be swayed by what we eat and how our gut reacts. This is explained  by what’s called ‘bi-directional’ communication, in which our gut and brain talk to each other using different pathways. 

Re-focusing energy is powerful. With enough time, journaling can become a way to channel your energies into finding peace and introspection. What’s best about all this is that journaling can take any form you want it to. It’s simply a way to get your thoughts out on the page. Humans absorb so much information and stimuli during their waking hours; life, as it turns out, can be overwhelming at any point in time, regardless of an IBD diagnosis or not. 

Journaling should be a way to relieve stress, a way to declutter your mind. I’ve found it especially helpful to process my physical and mental pain; even doodling can help distract your mind for a few minutes. Especially for patients with IBD, a journal can be a place to record symptoms, reflect on treatments, or even track what foods you’re eating (Check out this article on how to start a food diary by David, a 2021 CCYAN Fellow!)

All you need is a notebook, even just a piece of paper, and a pen or pencil. Some people find it helpful to pair a journaling session with a few minutes of meditation: this is your choice! Whatever makes you feel the most grounded and relaxed. 

Here are a few journaling prompts to get you started:

How are you feeling right now? 

What does your body need? 

What is giving you energy? What is taking your energy?

What are you grateful for, at this moment?

What are some themes in your life right now? (rest, peace, healing, etc.)

Things that feel heavy today; things you can try and release today.

What do you need to let go of in order to move forward and grow?

What beliefs and assumptions are holding you back?

What do you have to be proud of? 

Where are you feeling stuck? Where are you feeling growth?

Celebrating Black History Month in the IBD Community

“Representation creates trust, so why aren’t there more people who look like me included in research and education?” This quote by Melodie Narain-Blackwell brilliantly describes the feelings that so many Black and brown IBD patients have. In recognition of Black History Month, what can we as a chronic illness community do to support our fellow Black IBD patients this month? Standing in solidarity with this marginalized community, helping amplify their voices, and acknowledging their experiences are ways to starting bridging those gaps. 

It is important to support BIPOC patients by recognizing the additional barriers that minorities, especially those in the Black community, face when navigating medical care and public health. Historically, Black people have been marginalized, abused, experimented on, and underrepresented in medical trials and research. Being seen as easily disposable, Black people have had to endure the systemic injustices of medical discrimination and medical racism. Crohn’s and ulcerative colitis are chronic diseases that statistically occur less frequently in African-Amercian populations. Statistics also show that Black people are more likely to not have their symptoms believed or validated, which has ushered a crisis of misdiagnoses. It is clear that implicit bias and antiquated medical beliefs are factors in the hesitation that Black people experience in the medical field. This phenomenon has led to an inherent distrust of medical institutions and treatment in the black community. As IBD patients we understand that having the right diagnosis and starting treatment is vital for healing and longevity. This concern is magnified in the Black community due to the systemic injustices previously mentioned.

 When I first started to become ill in 2019, I did have some internal generational trauma that made me hesitant when seeking medical care. After months and months of pain I finally decided to go to the hospital to get some answers. When speaking to the doctor about symptoms, I vividly remember feeling an overwhelming sense of unease rattle through my bones. What happens if my experiences and symptoms aren't taken seriously? How can I truly convey the severity of how I feel? Although I did not receive a proper diagnosis from the hospital, I was lucky enough to have the staff members at the hospital believe and validate me. I was privileged that this was not an overtly terrible experience, but it does not take away from any reservations I had, as well as the reservations that countless other Black people have. 

We must acknowledge and hold space for Black people within the IBD community through advocacy. Having a diverse range of anecdotes and stories will only propel this community to further embrace the lived experiences of so many Black and brown people who are voiceless. Education and conscious activism will only lead to more positive intersectional change. 

In recognition and celebration of Black History Month, here are a few black pioneers in the IBD community as well as Gastroenterology:

Sadye Beatryce Curry was the first female African-American gastroenterologist in the United States. On top of her endless list of accomplishments, she was a founding member of the Leonidas Berry Society for Digestive Disease as well as the first woman to be elected chair for the Internal Medicine Section of the National Medical Association.

Leonidas Berry was the first African-American gastroenterologist in the United States as well as a pioneer for the advancement of endoscopy procedures. Dr. Berry also invented the gastroscopy scope. Leonidas Berry has a passion for bridging the gap of racial problems in public health. 

Gary Richter is a gastroenterologist and currently runs Consultative Gastroenterology in Atlanta, and has become the first African-American president of the Medical Association of Atlanta. 

Melodie Narain-Blackwell is the founder of Color of Crohn’s and Chronic Illness (COCCI) which is a nonprofit focused on increasing quality of life for minorities who battle IBD and related chronic illnesses.

Pandemic, Lockdown, Isolation and Chronic Illness

It has been almost a year now and we are still in the middle of a pandemic waiting for our lives to return to normal. However, reality may never be the same again. 

So much has changed, but it seems like nothing and it makes it difficult to feel the comfort of real security.

My return - and the return of many other patients with chronic conditions- to normality may be further away than most of you. But I know that all this is equally difficult for all of us. 

They say that only the elderly and people with underlying diseases are at risk. The vulnerable population. 

But what happens when you are the vulnerable? 

I belong to those who they call vulnerable. I never hid my illness nor was I afraid of the stigma. 

I look young and healthy, but I’m not! 

I’m immunosuppressed, which makes me vulnerable to any kind of infection. 

We have been in lockdown for months. This is certainly not easy, nor is isolation.

I understand that it is difficult to change your daily life, but do you know how many times we, the vulnerable, have changed our daily lives not because we wanted to, but because our health imposed it?

How many times have we canceled a plan at the last minute, favorite foods we stopped eating, parties we missed and much more?

For those of us who are vulnerable, it is not so foreign to stay home, since we have spent long stays in our home and before COVID-19. 

I am in quarantine for a long time. It is not easy, it dissolves your mood, your body. Staying home is unbearable for everyone. 

Isolation, despair. 

And it is now that we are all looking for ways to balance our security with our contact with the world. 

All of this is not so foreign to me. I have some chronic illnesses that require me every day to choose what to do and what not to do. Even before the pandemic, I was very careful, evaluating what was safe to do and what was not. 

I do not understand big differences in my own life now with quarantine; that I am not allowed to be touched, that I can not go to the hospital and maybe two or three more things.

And recently I made a finding that has a lot in common with today's reality. 

I realized that my illnesses will never leave me, while a cure seems like a distant dream for now. 

Yes, I can take steps to improve every day, but what I thought as “normal” in previous years may never come again. For many years I waited for the cure to continue my life. Now that I accepted that I would carry my diseases with me, I gained freedom. My goal now is not to be cured, but to live better. 

So as I realized that it is not realistic to wait for the cure to live, so is the pause we have entered because of COVID-19 until our life is “normal” again. 

And this is the real challenge: how to move on and stop waiting to get back to normal.

Stay safe! 

Challenges as a Crohn's Warrior in Malaysia

In Malaysia, Crohn’s disease is also known as “Western Disease” or “Rich People Disease.” The reason behind this is mainly because Crohn’s is a rare disease in Asia,  particularly in Malaysia, as compared to Western countries. Many in Malaysia have never heard of this disease. Therefore, they are not aware of the Crohn’s and colitis patients’ struggles with their pain, medical procedures and psychological issues. 

At the beginning stage, I had no one to guide me. I had no idea on how to handle my newly diagnosed disease. With no medical background, no one in the family or friends with similar conditions, I struggled to cope with this disease and my normal life. Can you imagine the struggles I faced as a first year university student with my condition? I was  alone and I didn’t even understand what was going on and my normal was no longer a  normal. The internet was my only resource for information other than my doctor. By reading  everything I could find in the internet, I slowly started to understand this disease. Back then,  there wasn’t even a support group for Crohn’s in Malaysia as the disease is relatively unknown to Malaysians. In fact, I didn’t even known about any other Crohn’s patients until I  met one almost a year later after my diagnosis. My gastro doctors encouraged me and other patients to start a group so we could create a support system to each other. Now,  newly diagnosed Crohn’s patients or caregivers in Malaysia have access to few channels  that they could use to discuss, ask, guide and support each other going through this painful disease. 

Living with chronic disease, I had to adjust and adopt to new diet and lifestyle.  Changes in diet were mostly trial and error in the beginning. I had to monitor my  consumption and take note of any changes. Why did I have to monitor those changes? It is simply because I wanted to avoid flare ups that were caused by certain food that I consume.  For me, I found that my Crohn’s is mostly under control when I avoid foods that contain eggs. So I have to ensure my daily food consumption is egg free. If I didn’t, I’d have to visit toilet frequently the whole day. Precaution is needed for Crohn’s patients because flare ups can happen in any situations, therefore any heads up is a good one to have. 

Apart from my diet, I had made some massive changes to my daily activities too. Since I’m an Ostomate, I have to ensure that I don’t partake often in hardcore sports in order to avoid stoma prolapse. 

The understanding and acceptance of IBD in society is still a challenge for me. Most of them, as  I mentioned above, do not know about Crohn’s disease. I remember one of my friends asking me “Sara, is your disease infectious?”. At that time, I just laughed and say “No, it  doesn’t”. The lack of awareness, although understandable, is a huge disappointment when  someone I confided in is not taking any initiative to understand it.

Stress is another thing that I started to consciously manage. What is the connection  between Crohn’s and stress? Well, stress generally affects a person emotionally and mentally as it damages a person’s emotional equilibrium. But it also affects the person’s health. Even a person without chronic disease can feel their health being affected by high stress levels. So, anyone with chronic health issues, such as IBD patients, have higher  chances of having a relapse and flare when they are stressed. It is imperative that I  recognize my stress inducers, my stress level, my tolerance level and ways to reduce stress  so that I do not have chronic flare ups. Although it is impossible to live stress free all the time, I  believe that I should try to manage stressful situations to the best of my abilities.

Navigating relationship with Crohn’s is complicated and challenging. Crohn’s has created ups and downs in my relationships with my family, friends and loved ones. In the beginning it was really hard to explain to them my condition. They did not understand the condition or why and how I got this disease in the first place at all. It took a while for my  family to accept my condition and now they are slowly getting used to it. They are a great  support for me at the moment, and my heartfelt thanks. 

Dealing with Crohn’s is tough enough and unfortunately, Crohn’s is not something  that we can ignore or that it will disappear one day. Every single day is a challenge for me because I go through physical and psychological pain. I have to survive, improve my quality of life and live my life as normal as possible; I hope more people will become aware of  Crohn’s disease, of patients’ struggles, and accept their conditions. Be kind even if you don’t see someone’s struggle, their pain or their decreasing health.

How to Start a Food Diary

Dear Diary,

Sometimes when I eat it feels like a herd of angry buffalo have taken up residence in my gut. The rumbling, the pain, and the regret are all too familiar at this point. Maybe I just shouldn’t eat at all. Maybe that would be best. I wish it could just stop…

Okay, I might not be talking about that type of diary, but I’ve had many days in my Crohn’s journey where that could have described me. Like many people with Inflammatory Bowel Disease (IBD), I have a frustrating mix of good days and bad days. It always baffled me how I could feel good one day, but terrible the next. I wanted to know why. This started my journey of paying closer attention to what I eat, and in turn, keeping a food diary.

Why a food diary?

Our environment is everything we come in contact with on a daily basis that isn’t us. The air we breath, the things we touch, and the food we eat all make up our outside environment. If nothing in our environment impacts a disease, it should feel the same every single day. For me, and many others with IBD, this just isn’t true. In this case, we must start looking at our environment as a source of triggers for our disease.

One of the largest parts about how we interact with our outside environment is what we eat. Every day we eat a variety of different foods, from a variety of different places, that have a variety of different health effects. For me, food was an easy place to start to try to figure out some of my disease triggers. I know what I am eating every day, so why not try to see if there is any connection between what I eat, and how I feel. This led me to food journaling, and it has been an invaluable resource in helping me navigate and manage my own disease. It has given me power.

Research also backs up this idea. In one study done in 2016, one group of Crohn's patients was told to exclude either the four food types they had the highest antibodies to, while the other excluded the four food types they had the lowest antibody to. The group that excluded the foods types to which they had the highest antibodies had significantly lower disease activity and significantly higher quality of life.1 We might not have access to antibody testing, but we can certainly try to figure out what foods are worsening our disease and quality of life.

How to write a food journal

There are three main things to consider when writing a food journal: what you eat, the time you eat, and how much you eat. With these three written down, you will be able to better make connections between foods and symptoms. Let's do an example: For breakfast this morning, you ate a bowl of oatmeal with blueberries, some bacon, and a cup of coffee (I know, I know, coffee isn’t exactly known for its stellar track record in collaborating well with IBD, but it's a made up example!) How would that look?

Tracking Symptoms

Symptoms are a little trickier. Say you have some pain in your lower right abdomen, how do you know what meal might have triggered you? Was it the meal you ate 5 minutes ago? 4 hours ago? The day before? For this we need to know a little bit about how long food takes to get to each different part of the intestines, also called the intestinal transit time. In a normal, healthy adult the following is accurate:

But what if you’re flaring? Diarrhea, inflammation, stricturing, and other aspects of a flare can all impact the amount of time it takes for food to get to the finish line. Some studies have been done on intestinal transit time in IBD patients, with most finding that the intestinal transit time is longer in IBD than in normal healthy subjects.2,3,4 In one patient with Crohn's disease, it took 156.2 hours for one meal to pass through. Talk about taking the scenic route! Like many other things with IBD, you are going to have to take an individual approach and problem solve to figure out how to best match symptoms and meals. 

Resources

Tracking food can be done in something as simple as a spiral notebook, but there are also other options available. Here is a list of some apps you could use instead of a physical journal:

• mySymptoms Food Diary & Symptom Tracker (Lite) by SkyGazer Labs LTD

• Food Diary by WeCode Team

• Cara Care by HiDoc Technologies

References

1. Gunasekeera V, Mendall MA, Chan D, Kumar D. Treatment of Crohn’s Disease with an IgG4-Guided Exclusion Diet: A Randomized Controlled Trial. Digestive Diseases and Sciences. 2016/04/01 2016;61(4):1148-1157.

2. Andersen K, Haase A, Agnholt J, et al. P-113 Gastrointestinal Transit Times and Abdominal Pain in Crohn's Disease. Inflammatory Bowel Diseases. 2017;23(suppl_1):S40-S41.

3. Fischer M, Siva S, Wo JM, Fadda HM. Assessment of Small Intestinal Transit Times in Ulcerative Colitis and Crohn's Disease Patients with Different Disease Activity Using Video Capsule Endoscopy. AAPS PharmSciTech. 2017;18(2):404-409. doi:10.1208/s12249-016-0521-3

4. Haase AM, Gregersen T, Christensen LA, et al. Regional gastrointestinal transit times in severe ulcerative colitis. Neurogastroenterology & Motility. 2016;28(2):217-224.