Negative Body Image

This article was written by Saravanan Nagappan from Malaysia.

Photo by Ismael Sanchez from Pexels.

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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

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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.

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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

Little Wins: Things that Keep you Going

This article is by Nandani Bhanot from India.

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To be very honest, a little over a year ago, I had little to no idea about the presence of chronic illness patient-led advocacy efforts around the world. It is a real pity because as I look back, it would have helped me navigate many of my IBD experiences better. I would have been armed with more information to vouch for my safety, comfort and rights. However, I am glad I started now rather than later, and I look at the many things I have learned thanks to the Crohn’s and Colitis Young Adults Network (CCYAN) with great satisfaction. Yet, patient-led advocacy is harder than it seems, especially in the South Asian context. 

When I was first diagnosed with IBD, I was at a stage in my life where taking up space felt complicated and wrong. So at moments where my illness conflicted with social plans, I would push my needs away rather violently in favor of not making other people uncomfortable or having to explain my uncertain situation. Sometimes, when I ignored my needs too often, I would bitterly burst open – they were highly volatile moments of trying to advocate with very little information. It was akin to a baby taking its first steps and learning how to walk on shaky ground. The feedback during these first years was overwhelmingly negative, with people underestimating the severity of my illness, disbelieving my experiences and ignoring my needs. I admit, the advocacy was ungraceful and thus perhaps, I received unfavorable feedback. Cut to now, I am still learning how to best advocate for myself, people with IBD, and the larger chronic illness community. Now, I’m starting to receive positive feedback. 

Being vulnerable requires immense courage in the South Asian community. The society thrives on critiquing and scrutinizing everything that is a part of it, and with very rigid definitions of what success is and what the many shortcomings are, to put yourself right in the middle of it all is a courageous task. I started actively and unabashedly talking about my illness only after I joined CCYAN this past year. I did not expect to impact the social circles around me, even though part of my goal was to reach out to someone like me in the past and help with information and support. Unfortunately, every time I posted something, I was simultaneously fighting internalized shame from the vulnerability of allowing it to be shared. The society can make you feel like you are exaggerating your experiences, asking for attention, and can even make you question your own reality. Fighting your immune system, the ableist world system, people’s misunderstanding of your disability and your own thoughts can be exhausting and can make one feel demotivated easily and frequently. With basic rights not covered for the majority of the Indian population, raising awareness for invisible disabilities can seem completely pointless rather quickly, and like your efforts aren’t making a difference. But this is not true. 

Ever since I embraced advocacy wholeheartedly, multiple people have approached me to say their thanks in helping them understand the chronically ill in their personal circles, or in helping them understand their own symptoms. Connections have been made where otherwise we would have remained strangers, and strong support systems have been established where before, people may have felt extremely alone in their struggles. And while there is no lack of unsolicited opinions and unhelpful feedback, the weight of the positive interactions is not to be underestimated. They make the whole thing worth it. Even if the posts impact one person positively, especially in knowing they are not alone, it can make a world of a difference. For instance, think back to when you felt alone with a certain aspect of your illness/significant life event. Coming across something that resonated with the most vulnerable part of you must have had an extreme impact. In my case, when an adult had opened up about navigating a life with ulcerative colitis, it changed my life. I’d previously thought that being diagnosed with IBD meant my life had basically ended. With all the restrictions and future health risks, this person showed me life could go on, just differently than we imagined. So in these moments, when I realize someone is actually impacted by what I’ve posted, that is what keeps me going.

Starting a New Treatment: My Experience with Humira and Stelara

This article is by Jennifer Lee from the United States.

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Here’s a picture of me before my treatment! A bit nervous, but hanging in there.

This past week, I received my very first dose of Stelara, my latest biologics treatment, at Mount Sinai in New York City! Unfortunately, even after a year on Humira subcutaneous injections, my Crohn’s symptoms have not subsided as we had originally hoped. After having seton drain placement done back in December 2020, along with another operation in June 2021, my healthcare team at Mount Sinai’s IBD Center decided that it may be best to try a new method of attack with a new set of biologics treatment.

Before starting the treatment, I had multiple healthcare workers stop by my room to explain what exactly Stelara was. I’m grateful that my mom was there to be by my side during this transition, but I also know what a blessing this is. When I was first diagnosed back in June 2020, I was completely alone in the hospital while COVID-19 infection and hospitalization rates were through the roof. The simple comfort of being surrounded by a loved one went a long way. 

Here’s me while receiving my first dose of Stelara intravenously! The next dose will be done via injection, hopefully on my college campus.

While I originally had a bit of trouble breathing in the first few minutes, my nurses assured me that this was not an allergic reaction to Stelara and that I was reacting well to the medication. It only took about an hour for the entire round of Stelara to be infused, but I did wait an additional 30 minutes to ensure that I would not experience any additional side effects. Truth be told, I was surprised at how efficient and fast-paced the entire infusion center at Mount Sinai was; I felt completely safe and well taken care of in their midst. Shoutout to the tireless effort of the amazing healthcare workers at Mount Sinai!

The day immediately after my first dosage of Stelara, my chronic fatigue kicked in, leaving me completely knocked out the morning after. Even after a year of living with Crohn’s disease, I’m still surprised by the ways that chronic fatigue manifests in my life. Although self-care admittedly goes a long way in understanding my body’s signals, I was most definitely caught off guard by how exhausted I was after the first dosage. 

Moving forward, it’s a bit terrifying knowing that my treatment plan may or may not work. However, I feel so grateful to have access to doctors that specialize in IBD care and surgery; all IBD patients deserve access to the most effective treatments for their specific condition. My first dose of Stelara was a reminder of not only how fortunate I was to have a second chance at a biologics treatment, but also of how much more work needs to be done to ensure that healthcare becomes equitable for all.

Tips to Improve Your Quality of Life with a Stoma

This article is by Saravanan Nagappan from Malaysia.

Photo by George Becker from Pexels

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Many of my ostomy friends confided that their life has changed since they became an ostomate. They feel their quality of life has deteriorated after having a stoma. They are unable to enjoy their life as before they became an ostomate. They mention changes to their diet, workout, and their social activities not remaining the same as before. Yes, I have to agree with them, because what they say is a common fact for an ostomate to experience and I personally faced the same issue as well even a decade being an ostomate, still my life is not the same as before. I’m going to share with you a few tips on how I have managed to reduce the impact a stoma has on quality of life based on my experiences.

Accepting your new life as an ostomate

The first tip is acceptance. We need to accept that we are ostomates and prepare for it both mentally and physically. At the end of 2011, my surgeon approached me and suggested that I have to go for Ostomy surgery as it was the best way to heal my fistula. My surgeon informed me regarding the complications I would be facing. At that time, I was confused and worried. I took a few days to decide whether I want to do it or not. The decisions involved many considerations, especially the changes in my life that come from being an ostomate and living my entire life as one afterward. After a long discussion with my family, I finally agreed to go for the surgery. I psyched myself up mentally by listing the benefits of this surgery and the changes it would bring to my life especially the physical ones. Since I accepted my situation and geared up for it, post-surgery changes were not monumental. My goal at that point in my life was to heal my fistula and get my Crohn’s under control. It was more than enough for me.

Adapting to new norms

The next piece of advice is adapting to new norms. This is important for an ostomate because a new ostomate is like a newborn. We are reborn into a new physical self and the changes it brings to our routine are something we have to relearn all over again. Without a choice, we have to adjust to new norms. Common new norms are our diet, daily routine, and social activities. It’s impossible to change everything overnight, but focus on small changes in our daily life and we will be able to see the impact in the long term. Once we learn how to slowly accept and adapt to our new norms, we will find it easier to live our life as an ostomate. The problem occurs when we refuse to accept new changes or routines. Inability to accept the changes can lead to deterioration of life quality.

Pre-planning your days

The following tip is to pre-plan. Pre-planning everything you want to do is one of the ways to improve an ostomate’s quality of life. Pre-planning a daily routine or outing is common in anyone’s life. However, it could be an essential habit for an ostomate. For example, assume that you need to attend an event in a few days’ time. In order to attend this event, you need to pre-plan your diet so you can avoid any food that can cause gases. By doing this you may avoid visiting the washroom all the time in front of others and enjoy the event more. Not only diet, but you can also pre-plan for other matters such as your physical and emotional wellbeing as well. Remember pre-planning can help to prevent any last-minute mishaps or emergency withdrawal from a situation.

Physical exercise for a better quality of life

As a final tip, I personally suggest that ostomates perform some physical exercises. After my surgery, I thought that my workout routine had come to an end. However, my thoughts had changed after I met a few senior ostomates. They advised me to not abandon my workout and they guided and motivated me on how ostomates should do their workouts. I started again with basic workout routines and challenged myself to go for the harder level. So how do workouts improve our quality of life? Doing physical exercises help to build our body muscles, reduce unwanted fats, keep our body fit and flexible and also improve our blood circulation and digestive systems. Moreover, workouts help to remove toxins from our bodies. which will keep our bodies healthier. Exercises also help to keep our minds active and create more positive energy within us. All these could tremendously improve ostomates’ quality of life.

In a nutshell, ostomy surgery is a life-saving procedure for many patients. Therefore, it should not be treated as a burden. Rather, we must take our own individualized care and explore new choices to improve the quality of life after ostomy surgery. I hope these tips can help you in your ostomy journey.

Let’s control our quality of life, it is in our hands!

"But You Don't Look Sick" - A Photo Journal

By Vasiliki-Rafaela Vakouftsi from Greece.

“But you don’t look sick”. How many times I have heard this? Maybe I don’t look sick to you but I am sick and my daily life is far from what you may think. 

I tried to captures in pictures my daily routine as a chronic patient and I’m going to share them with you. 

First of all, let me tell you some things about me. My name is Vasiliki-Rafaela, I’m a musician and I have Crohn’s Disease, Adrenal Insufficiency, Psoriasis and Psoriatic Arthritis. I have written a book about my journey with Crohn’s and a book about my life with Adrenal Insufficiency. Also, I really like traveling and I really miss it with the pandemic. 

Now let’s start with the hospital visits…

...the hospital stays and therapies…

...the hospital stays and therapies…

...take the pills, medicines and supplements…

...and maybe today is the day of the week for the injection for Crohn’s…

...or maybe I need the emergency shot for Adrenal Insufficiency…

And now it’s time for a walk.. Don’t forget to carry the pills with me...

...and of course my medical ID…

Back at home again.. Really exhausted...Let’s check the e-mails and read a book before going to sleep

That’s a little idea of how my daily life is. But, you’re right. So before saying “You don’t look sick” think of what is behind the image and what you cannot see…

What I Eat in a Day

TW: mention of eating disorders & disordered eating

I really didn’t want to write this article. I am pretty open about how I have a lot of dietary restrictions. When I go out to eat with friends, I usually tell them that I follow a strict diet for my Crohn’s Disease. Then they’ll ask if I can have anything on the menu, and I will say No. The inevitable next question is always: So, what can you eat? I’ll list off a few foods like oats, bananas, blueberries, broccoli, chicken, and buckwheat, and that's usually the end of that conversation. I’ve had it so many times; honestly pretty much any time I meet somebody new.

I tend to think that when I give people that list that they just assume I stop listing things because it would get excessive if I named every food I could eat. I imagine that they might think I am going through a typical day, and maybe other days look different than the short food record I have given. I don’t think that anybody really considers what it feels like to eat the same 5-10 foods over and over and over and over again. But I do. I do because that has been my life since January of 2019 when I entered “remission”.

Remission for me has always been rocky. I noticed really quickly that while I felt better overall (you know, my body wasn’t trying to set records for lowest hemoglobin and highest CRP simultaneously), I still had some symptoms. I decided to take the advice I give a lot of my IBD patients these days and start a food journal to try to find my trigger foods. Slowly I started feeling better as I cut back on the foods that I noticed were giving me hives, acne, bowel cramps, diarrhea, and a whole host of other symptoms. 

So I got to a baseline diet with some foods I knew I felt good on and did that for a bit. It was wonderful, as long as I ate these foods, I felt pretty much “normal” and could do all the activities I wanted. But I wanted to find more things I could eat, so I started to do food reintroduction. I would try a new food for one meal and see how I felt afterwards. If I felt worse, I knew that food wasn’t a good fit and I’d mark it as a trigger food.

Fast forward to 2+ years of trying a new food every weekend and you’d expect my diet to be all normal and varied with only a few restrictions. Haha I wish. I’m pretty sure after all this time it has gotten worse. I guess the problem really is that my body thinks pretty much everything other humans call edible is unfit for consumption, and it lets me know that loud and clear.

That all is the much needed background to my current diet. I guess I should share what it looks like at some point as that is the main reason I wrote this article, so here goes:

Breakfast

• 3 cups of cooked rolled oats with ½ sliced banana and ½ cup blueberries.

• 1 Orgain Nutritional Shake

Snack

• 1 Orgain Nutritional Shake

Lunch

• 2 cups of cooked buckwheat, ½ sliced banana, and ½ cup blueberries

• 1 Orgain Nutritional Shake

Dinner

• 2 cups of cooked buckwheat, 1 ½ cups cooked broccoli, ½ a cooked chicken breast.

So…..yeah. I’ve pretty much been eating that or some slight variation (I used to eat a lot of plantains too) day in and day out for a few years now. Pretty messed up right? I am pretty sure from the outside this looks like at least disordered eating if not a full blown eating disorder. But, like, what am I supposed to do? It's not like I am not trying to expand my diet, I just can’t without Crohn's kicking my butt. Also I promise I’ve told every GI doc I’ve had about this and unfortunately there hasn’t been anything they have been able to do to help.

I decided to write this article because during the few years I’ve had these issues with all these trigger foods I’ve never really found anything online that mirrors what has happened to me. My hope is that if there are more people with IBD out there who struggle with these food issues as much as I do, that you at least feel validated that you aren’t the only one going through this. It sucks, and maybe one day we will have an answer as to why it happens. 

Until then, if you are having issues with foods triggering your disease, bring it up to your doctor or dietitian. Spread the word. Even if, like in my case, the doctors or dietitian isn’t able to fix the problem, at least we are fostering awareness and discussions that will bring about solutions in the future.

Digestive Disease Week: Impact of COVID-19 on GI Patients and Practices

The Impact of COVID-19 on GI Patients and Practices was an eye opening session that shed light on the effects the coronavirus has on GI patients. Adam VanDeusen shared his study covering how crucial colonoscopies and endoscopies are in the management and diagnosis of inflammatory bowel disease, among many other illnesses and cancers, an area that is being profoundly affected by the COVID-19 pandemic. Timely diagnostic and management procedures, such as colonoscopies, are critical to ensure that patients receive the treatment they deserve in a quick and timely manner, whether that be an IBD diagnosis, management of IBD including a switch in medication, screening for anemonas and colorectal cancer. I’m sure many of you reading this with inflammatory bowel disease or other digestive diseases can relate to how the pandemic has hindered your healthcare and treatment. This reiterates why studying how to decrease backlogs and improve patient care in a critical part of every digestive illness, including colonoscopies and endoscopies, are so important. 

VanDeusen discussed the reality of COVID-19 and its detrimental effect on colonoscopies needed for patients. The COVID-19 pandemic has caused a high number of cancelled or deferred endoscopies and colonoscopies since March 2020 due to health system policies, staff and facility re-deployment, and distancing measures. For my fellow IBD readers, I’m sure this doesn’t come as a surprise to you. Across the world, many colonoscopies and endoscopies were delayed or cancelled, causing stress, chaotic management of treatment, and prolonged diagnoses. In addition to IBD, colonoscopies to detect colorectal cancer, a type of cancer that can be prevented and treated when undergoing timely diagnostic colonoscopies, have been backlogged and delayed. VanDeusen dives into simulation predictors that forecast solutions to reduce the backlog and wait times patients are experiencing to ensure diagnostic treatments via colonoscopies and endoscopies are available for patients. As an alternative to colonoscopies, many gastroenterologists have been using a high-sensitivity stool-based test (FIT) as a way to detect colorectal cancer to prolong screening wait time from five to seven years if the results come back negative. 

Benefits of high-sensitivity stool-based testing: 

• Alternative to colonoscopies to detect colorectal cancer 

• Lessens wait times 

• Extend time between colonoscopy screening 

The three strategies in the simulation are Overtime, Exchange, and Extend. Through Exchange, GI clinics utilized the stool-based tests as an alternative to colonoscopies for patients that were referred strictly for colorectal cancer screening. Stool-based testing resulted in reducing the wait times for patients undergoing colonoscopy screening referrals as well as allowing quicker wait times for patients with no alternative diagnostic treatments. The second strategy, Extend, extended screening colonoscopies for patients with 1-2 adenomas on previous colonoscopy exams from five to seven years. Lastly, the Overtime strategy added one weekend endoscopy day to result in quickly seeing more patients for endoscopies and colonoscopies. 

VanDeusen highlights that the study aimed to quantify the impact of evidence-based strategies to improve endoscopy access during the COVID-19 pandemic. The method created a model of a single endoscopy unit with an integrated healthcare system using a discrete event simulation in C++. The model began in March 2020 for 150 weeks and each simulation was replicated 100 times to ensure accuracy. To simplify the model used, when a patient arrives to book a colonoscopy and that patient is unable to secure a scheduled appointment, that patient is then put into the queue. This study looked at four different simulations to provide the best approaches for GI clinics to achieve the lowest wait time, Extend, Exchange, Overtime, and a combination. 

VanDeusen explains that the study shows that triaging patients effectively will result in performing more diagnostic and high-risk surveillance procedures in a timely fashion. Without offloading strategies, prolonged queues and wait times develop, especially for screening colonoscopies. The Overtime strategy of one weekend endoscopy day increased colonoscopy volume and had the greatest impact on the number of screening procedures completed. The Exchange strategy reduced overall wait times more than Extend and Overtime. Combining strategies is the most effective solution, especially given the fact that doctors and healthcare staff have been continuously overworked during the pandemic. 

Takeaways: 

• Effective triage will reduce colonoscopy backlog and queues 

• Doctors working overtime is the single best strategy to reduce colonoscopy wait times 

• Combining strategies will best reduce colonoscopy wait times and allow more patients to be seen in a timely fashion  

This study was extremely important and was desperately needed to provide a solution to reduce wait times experienced in gastroenterology clinics across the world. The importance of this study is paramount and must be recognized and implemented by GI clinics and doctors to reduce wait times and improve treatment for patients for not only colorectal screening and diagnosis, but also for all patients with digestive diseases, including IBD. For those patients whose treatment has been affected by the pandemic, including me, this provides great hope and comfort that medical treatment can return back to normal and can withstand future uncertainties. 

Growing Pains: IBD Lessons Learned from the COVID-19 Pandemic

In March 2020, the COVID-19 pandemic turned the world upside-down as we knew it -- that, in and of itself, is already the understatement of the year. Disability activist Alice Wong spoke of how the nation’s need for ventilators in hospitals directly conflicted with her needs as a disabled patient; Tiffany Yu, founder of Diversability, used her platform to raise awareness of transparent masks for easy lipreading access. Already, at-risk patients suffered from a lack of attention and space, only for this to be exacerbated by a public health crisis. 

However, the pandemic also offered a chance for those with disabilities, and specifically IBD, to rethink our routines and lives. For example, in my own experience with Crohn’s disease, I’ve found that staying at home during the school semester had me re-thinking all my prior decisions in my relationship with food. It was, in fact, possible to regulate my diet and work in my medications without compromising my education -- the flexibility of virtual classes in university had opened up a new way of life for myself, one where I could sneak off to the bathroom during lecture without worrying about missing key points or bumping into desks. 

Living with Crohn’s, it often feels as though my time is not my own. This phenomenon of constantly running on other people’s schedules is not exactly unique to Crohn’s or IBD as a whole -- in fact, it refers to a concept known as ‘crip time,’ in which society and its timetables ought to bend to meet the needs of disabled bodies and minds. It’s a community-inspired term that essentially encourages us all to work on our own time, taking up space as necessary to meet our individual body and mind’s requisites. 

Whether it’s knowing where the nearest bathroom is, or having accommodations to turn the Zoom camera off, accessibility is an essential cornerstone of working with IBD. As a college student, I’ve found that communication with professors and administrators has become easier in a virtual setting, allowing for flexible office hours and minimal commute to buildings. In all workplaces, key lessons should be taken and continuously applied from the pandemic, particularly in regards to accessibility for disabled folks. 

With this being said, a major caveat is that we as a society are almost always ‘plugged in’ or online -- being available on Zoom has made it near impossible to draw the (much-needed) line between home and the office, allowing professionals to work around the clock. As the world shifts back to a new state of burgeoning normalcy, may we all remember the importance of accommodating disabled folks in the workplace, in-person and virtually. 

For those with IBD or any chronic illness, it is of the utmost importance that we too learn where to place boundaries in our work lives, prioritizing our physical and mental health above all. 

Diversity in IBD: Being Disabled and Asian American

Almost exactly one year ago, I was diagnosed with Crohn’s disease after a grueling few months of trial-and-error diagnoses by my medical team. Truth be told, the news was a shock to my family, but not for the reasons you may first think of. 

In my mother tongue, there is no widely accepted translation for “Crohn’s disease,” not to mention “Inflammatory Bowel Disease.” In a way, my Asian American identity is one reason why it took so long for me to receive my diagnosis of Crohn’s disease in the first place; my gastroenterologist had not previously thought to test for a condition that was thought to be more common in Caucasians or Ashkenazi Jews. Even amidst official resources from various foundations, it is admittedly difficult to find Asian representation within the IBD community.

As a disabled Korean American woman, I experience IBD through the lens of multiple marginalized identities. At the intersection of ability, ethnicity, and gender lies an incredibly complex set of conversations that society has yet to fully parse out and create space for. 

While chronically ill and disabled folks found themselves facing a morphing status quo that was being overturned by a worldwide pandemic, their fight for accessibility and accommodations was simultaneously accompanied by embroiled racial justice initiatives. The Health Advocacy Summit has written extensively on how racism is a public health crisis, underscoring the need to include all marginalized communities in our activism efforts.

Personally speaking, I came face-to-face with the inevitable intersectionality of advocacy in the fight against anti-Asian hate. In the wake of 2020, the United States began to witness an alarming surge in anti-Asian racism that quickly escalated to violence and hate crimes. As a chronically ill patient, I knew exactly how it felt for an entire community to be marginalized, vulnerable, and at-risk, making it all the more urgent for me and my fellow student leaders to speak up against these acts of hate.

The intersectionality of these two identities is rarely discussed, yet they both mold and inform the other. My diet, my language, and my roots are so intimately tied to my Korean heritage, and in turn, my Asian American identity shapes the way I understand my chronic illness. As Sandy Ho wrote in Alice Wong’s Disability Visibility, “taking up space as a disabled person is always revolutionary,” but especially in the ways in which traditional East Asian attitudes often conflict with the mindset of the evolving American immigrant. 

The same goes for the ways in which Asian culture influences food options for those with IBD. Nandani Bhanot, another 2021 CCYAN Fellow, wrote about how IBD diets and treatments are rarely created with people of color (POC) in mind, alluding to the lack of content on modified diets with traditionally Asian dishes.

Moving forward, I believe that my journey with Crohn’s disease and Asian American advocacy are not unrelated, but in fact, closely tied. Perhaps the best next step our IBD community can take is to create space for disabled POC, uplifting their stories and amplifying their voices. 

Digestive Disease Week: Empowered Crohn’s Disease Care

I would like to thank CCYAN for providing me this opportunity to patriciate in Digestive Disease Week (DDW) 2021. One of the sessions that I attended is “Empowered Crohn’sDisease Care: Targets, Tools and Talking Patients”. From this session, I have learned about the use of treat-to-target approach to treat Crohn’s Disease (CD), the tools that may help risk stratify patients with CD, and about the personalized approach to CD care. The session was split into three presentations, which were presented by Dr. Parambir S Durai, Dr. David T. Rubin and Dr. Corey A. Siegel respectively.

1) Treating to Target: Aiming for Endoscopic and Symptomatic Remission

By Dr. Parambir S Durai

What is the study about?

Dr. Durai presented about the use and benefits of a treat-to-target strategy in CD aimed at deep remission.

Presentation summary:

We need to understand how this treat-to-target approach work. Treat-to-target approach which is also known as a tight control strategy is used to achieve sustained disease control. Target and risk will be set during this time, assessment and continued monitoring have to be done to ensure targeted outcome has been reached. The most important goal in this treat-to-target approach is to achieve endoscopic healing, normalized quality of life and absence of disability.

The different studies mentioned in the presentation aimed to give CD patients early therapy using a treat-to-target approach. Treat-to-Target approach will be able to prevent adverse long-term outcomes. The studies suggest that the non-conventional methodsused at early treatment stage or frequently brings out positive outcomes to patients’remission.

Treat-to-target is treating CD patients until they achieve the desired target for the CD patients like us is healing. Healing can be mucosal healing where we go for endoscopy and the colon looks normal with no inflammation or ulceration. In some cases, there might even be histology healing which means when biopsy has done towards the colon or small bowel there is no inflammatory cells seen. In the case of a patient has fistula, then the target is to have closure of fistula. To achieve this target, the patient needs to be put under full remission.

According to Dr. Durai, patients whose response to the treatment by improvement in biomarkers results shown reduction in CRP and calprotectin. They may go for symptomatic remission. The next target is to achieve deep remission by continuing assessment and monitoring. At this stage, if the response is good, patient will be able to experience the huge improvement in symptoms, better quality of life, decreased in hospitalization and finally free from surgeries and disability and any serious disease- related complications.

Although the opportunities are huge and will provide patients with better quality of life or even achieving the absence of disability, there are some challenges that still exist in this approach. The first challenge is that treat-to-target is a time and commitment needed to follow through this approach as it needs more follow ups and more complexity of individualized process with the already busy clinical team. The other barrier is lack of knowledge of what might happen to patients later. Both patients and clinical team need to understand the limitation and provide active disease control to the patients.

2) Clinical Decision Tools: Assessing Risk and Taking Action

By Dr. Corey A. Siegel

What is the study about?

In his presentation, Dr. Siegel briefed about the importance of clinical decision support tools and suggested using clinical decision support tools to risk stratify patients for individualized CD care.

Presentation summary:

What are clinical decision tools? Dr. Corey explains that the decision-making tools are guidelines for medical providers to follow through different process based on different parameters. The tools can help to enhance medical decisions with provided clinical knowledge, patients information and other related information. And from the data gathered, doctors can formulating a diagnosis, assessing patients level of risk and help practitioner to improve the way they make decision to select medication for their patients from result shown from the tools.

Practitioner can apply several types of clinical decision support tools which has been developed such as AGA Clinical Decision Tool, IBD CDST, or CDPATH.

What can we learn from this presentation?

1. This tools help practitioner to decide right medication for patients based on the balance of risks and benefits especially at the early stage or before they develop complications.

2. By using these tools, it may help to reduce practitioners from making any risk of misdiagnoses and medication errors.

3. The tools improve efficiency and patients’ satisfaction.

4. . Give more confidence to practitioners to recommending right therapy and apply more aggressive monitoring technics.

3) Shared Decision Making in CD: The Path to Improving Quality of Life

By Dr. David T. Rubin

What is the study about?

Dr. Rubin discussed about the complexity of shared decision making for patient-centered and empowered CD care.

Presentation summary:

Dr. Rubin informed that the shared decision making involves three different parties. They are: -

1. Patient
- Person who suffer with IBD and request treatments.

2. Doctors/ IBD Nurses

- Medical provider who have fundamental knowledge about the disease and therapies which can be used to treat IBD.

3. Payor
- Person/company/agency who pays for the care and treatments for the patient.

To make the relationship between the three parties happen there are several factors that should take to consideration by all the parties. Refer to diagram below:-

He further explains that, for each patient, the provider and payor must consider four variables: efficacy, safety, convenience and access. These variables help to makeprogress and provide better care for the patients. Practitioners can use “Ethical Analysisand Medical Decision Making” framework to make difficult medical decision. This can help to strengthen the doctor-patient relationship.

a. Medical Factor (Beneficence)

- This is a value in which the provider takes actions or recommends courses thatare in the patient’s best interest. The principle is based upon the objective assessment of a doctor, and what they feel is best for their patient. The points of concerns are:-

•   What is the patient’s medical problem? diagnosis? prognosis?

•   What are the treatment goals?

•   What are the therapies recommended?

•   What are the risk factors of the recommended therapies as well as the disease itself?

•   How are patients benefited by medical and nursing care?

•   How can harm be avoided?

b. Patient Preferences (Autonomy)

- Refer to the patient’s right to make decisions for themselves according to theirown preferences. They can either agree to take treatment or refuse the treatment. The points of concerns are:-

•   Patient’s right to accept a treatment.

•   Reasons for patient’s refusal of treatment.

c. Quality of Life

- A major goal of medical treatment is to restore, maintain, or improve quality of life. Care management in treat-to-target should address the patients’ life goalsand include long term plan for stability and health. Quality of life is important in CD patients and their symptoms are directly proportional to the quality of thepatient’s life. The points of concerns are:-

•   Perception of quality of life

•   Normalization of symptoms

d. External Considerations (Justice)

- Involves provider bias or influences, resource allocations and payor decisions which effects the delivery of care for patients. Payors normally balance a budget and distribute their resources which might not be enough for the care the providers think optimum for the patient. There are differences in the providers view of what is needed and the payors view of what could be distributed in term of resources. Payor can look at different solutions to be more cost-effective, be more engaging in disease managements and partner up with experts to identify better support care for patients. The points of concerns are:-

•   What are the financial and economic factors involved in CD care?

•   Are there any problems for resource allocation?

•   Do payors have enough budget to cover the treatment?

  Dr. Rubin gave us an overview of how decision in CD are made and the complexity of it involving the three parties. Although decisions are individually based on differing onpriorities and values, the ultimate goal should be the patients’ sustained functionalremission. Therefore, the three parties involved should figure out how to care for CD patients and optimize the quality of life and involve payor more in the CD care.

  In summary, treat-to-target could be an effective way of treating CD patients with applying proper decision-making tools and involving all the decision makers (patient, provider and payor) to provide a better care, early treatment and allocate resources optimally.

Young, Nice, and Chronic Patient

Growing up is a process that we will all inevitably go through. We tend to live our lives with a sense that we are immortal. We learn to walk, we fall, we get up, we continue. Yes, life is pretty good. You learn a lot, you see new things, you spend a lot, you enjoy it. It is something that everyone does - living their life. It looks pretty simple until we start growing up.

In adolescence we begin to feel "older.” We go to school, we work for the coming of our adulthood. I looked like an ordinary teenager, I felt like an ordinary teenager - I thought everything was fine.

It was not exactly like that inside me. The reality was a little different. I was always the petite one of the class and I got sick often. The first symptoms of Crohn's disease began, which soon brought the psoriasis, then arthritis, and, recently, adrenal insufficiency.

New and full of life as I was, I was already setting goals for the future and dreaming. Yes, I was sure I would become an artist, I had decided.

Apart from some minor health issues, such as abdominal discomfort and lack of appetite, there was nothing wrong with me. That is, as far as I knew. I did not live in them, I was new. I was full of ambition!

I was about 15 years old when I began to realize that I should not take my health for granted.

I was at home relaxing listening to music when I suddenly collapsed in pain. I could not stand up.

A little later I was in the emergency room of a provincial hospital. Examinations, medications, but it seemed something temporary - it was not, as it turned out later. I was young, nothing could hurt me - or so I thought.

Then, I got some gastroenteritis (!) and it took me over a month to "recover" - obviously, since it was not gastroenteritis. Suddenly I started to get sick quite often. It had become difficult for me to live like an ordinary teenager, yet I was trying to go to school, the conservatory, and the orchestra.

I did not care much then, though. I was probably used to it. That was what I knew. I think my attitude started to change about a year later, when the visits to doctors and hospitals had increased significantly and I started to have more problems.

It was hard for me, as I suddenly had to struggle with things I had never imagined. I could no longer do what normal teens did.

As time went on, the "mysterious" disease then dissolved me more and more.

And life was moving on. I had to make brave decisions - it was not easy at the age I was then - as my health was deteriorating. I had to stop several things I liked or adjust them to the rhythms my body could handle.

I didn't do many things anymore. The only thing that kept me going was the music; it was becoming an increasingly important part of my life. I went to concerts very often because it was one of the few things I could do during that time. This made me face some of the difficulties I was going through.

After several years passed, I was then diagnosed with Crohn's Disease, psoriasis and arthritis. With the treatment I was receiving I was in remission and I had started to do everything. I was in university, I went on many trips, I went out and had fun, I went to concerts , I played in concerts. I no longer had almost any restrictions.

Until I began to feel very tired, nauseous, have a lack of appetite, and dealt with some other symptoms. I spent months looking for what had "broken" and why I felt that way. My examinations did not show any exacerbation of my known diseases. And then the day came when my rheumatologist told me to visit an endocrinologist and get tested for adrenal insufficiency, as the symptoms I mentioned made her believe that this diagnosis was very likely.

I could not make it to visit an endocrinologist because it was in the first wave of the pandemic, when everything was frozen around us, until I ended up in the hospital. A little later we had the results of my exams. My cortisol was very low, marginally detectable. My rheumatologist was right.

I was -again- newly diagnosed with something I knew absolutely nothing about and with a prescription for drugs I had never taken before.

In the following weeks I made the mental and physical adjustments to live with this new diagnosis that had just been added to my list of diagnoses.

Self-Care and IBD: Tips for a Healthy Post-Surgery Routine

Just this past June, I was rushed into the emergency room for examination under anesthesia (EUA) to address internal fistula and abscess formation. As life would have it, this was the same week that I was to start my D.C. internship in the Senate; with the new intern orientation ticking around the corner, I found myself drowning in anxiety just sitting in the emergency room. 

In a short amount of time, I had to manage my stress levels while planning for what my new summer life would look like post-surgery. With that being said, here are three tips to handle your post-surgery: 

1.  It is your choice on how you tell your immediate circles about your surgery. 

Sharing news about going into the operating room, especially under short notice, can be harrowing. In today’s age of social media, it often begs the question of how much is appropriate to share with our followers or our close friends. Remember that it is ultimately your decision as to when and how you tell your friends and close relations about your situation. 

Do not feel pressured in any way, especially regarding confidential medical details. With that being said, it can be comforting to know that caretakers and family will be there for you after your operation -- make sure you have the support you need to the extent to which you feel comfortable.

2. Treat your energy and capacity as if they were spoons.

Allow me to explain. One mentality that has radically changed the way I approached self care was the spoon theory: if one were to imagine their energy supply as a finite number of clean spoons they had to use throughout the day, then it is a matter of strategy on how one should distribute their spoons for the day. 

This tip can be applied to all aspects of life with a chronic illness, but especially after surgery. Don’t be afraid to prioritize yourself and your health during your postoperative recovery period. Those of us with IBD and chronic illnesses already have fewer ‘spoons’ to last throughout the day; as a result, we must be more mindful with our energy supply. Especially after surgery, we should focus on physical recovery and pain management above all.

3. Be kind to yourself. 

Sometimes, getting out of bed is the most you can do. Or, you might not even have the energy to sit up. What I’ve learned this past month is: you’re doing your best, and that’s enough. Every IBD patient is different; there truly is no one-size-fits-all answer. What I’ve learned is that living with Crohn’s disease looks drastically different from one patient to the next, creating what can be a very isolating and lonely experience. 

Nevertheless, with all these tips in mind, I would be remiss not to highlight how fortunate I feel to even have access to surgery and healthcare in the midst of the pandemic. I must also note that many of these tips are contingent upon the assumptions of having caretakers and a flexible routine, luxuries not afforded to many patients in more stringent economic conditions. As patient advocates, we should all be aware of the varying circumstances in which we all receive treatment. 

Undergoing surgery never gets easier, no matter how many times one heads into the operating room. However, I hope these tips can make your post-surgery transition a bit easier! Let me know what your self-care routine is like below!

Disability Pride: Educating Myself on IBD and Chronic Illness

July marks the start of Disability Pride Month! Crohn’s disease, and Inflammatory Bowel Disease overall, is covered by the Americans with Disabilities Act (ADA), a landmark civil rights legislation that was passed in 1990. The ADA effectively prohibited discrimination against those with disabilities by law, and although it has not completely eliminated obstacles for the disability community (far from it, in fact), significant strides have still been made towards progress for the disabled community.

While I’m thankful to live in a post-ADA world each and every day, I certainly faced my own struggles with embracing Crohn’s as part of my new life. One part of accepting my IBD diagnosis that blindsided me was the simple yet powerful act of accepting my disability -- I had anticipated the physical challenges that accompanied the surgeries and the colonoscopies, but I was not as prepared to tackle the internalized ableism that I had been raised with. 

In particular, I found a great deal of comfort in reading more about those who came before me with chronic illness and disability. Just under a year ago, John Altmann and Bryan W. Van Norden wrote a piece for the New York Times on disability philosophy and the ancient Taoist philosopher, Zhuangzi. They proposed that Zhuangzi was the first to challenge the notion that being disabled was immediately a misfortune, instead questioning the assumptions behind what qualifies as merit or value in society.

Far too often, those with chronic illnesses are not at the forefront of disability pride -- after all, it is not always easy to express solidarity with a community when one has an invisible disability such as IBD. However, this may actually be one of the most compelling reasons to celebrate Disability Pride month! For me, I found that reading more about the history of disability theory and activism allowed me to gain a greater appreciation for the often underreported legacy of such advocacy. Although I may be a bit biased as a current university student, I’m a firm believer that education is the key to equipping ourselves for the uncertain future that lies ahead.

Take a second to check out the several articles penned by our CCYAN Fellows this year, particularly those from Digestive Disease Week! Furthermore, as you celebrate your own IBD journey during this Disability Pride Month, here are some books on disability and chronic illness that you may find helpful!

• Disability Visibility by Alice Wong

  • Part 1, “I’m Tired of Chasing a Cure” by Liz Moore

• Haben by Haben Girma

• The Disabled God: Toward a Liberatory Theology of Disability by Nancy Eiesland

• Sitting Pretty: The View from My Ordinary Resilient Disabled Body by Rebekah Tausig

• Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann

• Crip Theory by Robert McRuer

Let us know what your favorite reads are!

Digestive Disease Week: Positive Gluten Sensitivity Seriologies and the Impact of Gluten Free Diet in Patients with IBD

There are a lot of strong opinions surrounding gluten free diets. Some view them as a fad diet, popularized by media and celebrities. Others report real improvements in their GI symptoms when going gluten free. And of course there are those with Celiac Disease, for whom a gluten free diet is a life changing therapy. Throughout my time as an undergrad studying dietetics, I have learned about the gluten free diet from all angles. I think a lot of the confusion surrounding the gluten free diet in IBD comes from two sources. First, there appears to be a difference between what patients report and what the limited research has shown. Second, this limited research and lack of conclusive evidence has created a difference of opinions among healthcare professionals themselves. It is a difficult situation where providers using their clinical judgement can recommend for or against IBD patients going on a gluten free diet, and both recommendations would be completely justifiable. 

In this article, I plan to give some background on the gluten free diet, and the current evidence for and against its use for patients with IBD. Then, I will summarize the wonderful study I learned about during DDW 2021 presented by Dr. Maria Moomal Dahar titled: Positive Gluten Sensitivity Seriologies and the Impact of Gluten Free Diet in Patients with IBD.

What is a Gluten Free Diet?

Gluten free diets are designed to eliminate the protein gluten from one's diet. Gluten is a storage protein found in some grains, including wheat, barley, and rye. Gluten is an important protein for baked goods, as it forms a sticky network that gives dough its characteristic stretch and elasticity. I don’t want to go too much in depth, as there is already an amazing article on the CCYAN website written by Leah Clark that describes the gluten free diet. If you desire to learn more about the specifics, her article can be found here.

The Gluten Free Diet and IBD

The main reasons to follow a gluten free diet are Celiac Disease, non celiac gluten sensitivity, and wheat allergy. 

Previously, there had been conflicting data regarding whether IBD patients are at a higher risk of developing Celiac Disease than healthy people. Some older, smaller studies have found increased risk, while others have found no increased risk or even decreased likelihood of having Celiac Disease.1 A recent, larger study has shown that IBD patients have an increased risk of having celiac disease. 

Non celiac gluten sensitivity is characterized by abdominal pain, discomfort, bloating, changes in bowel habits, fatigue, or depression after consuming gluten. The prevalence of non-celiac gluten sensitivity in IBD patients surveyed is reported to be between 5-28%.1 Those IBD patients who reported non-celiac gluten sensitivity were more likely to be following a gluten free diet. One thing I found interesting was that IBD patients were more likely to report gluten sensitivity if they also had a flare in the past 60 days. This points to the possibility that gluten sensitivity might be worsened in patients who are currently flaring or who have recently had a flare up of their IBD. 

Most research on the gluten free diet in IBD patients has been done through survey based studies. Unfortunately, these types of studies can only provide weak evidence at best. The surveys did find that of IBD patients who had tried a gluten free diet, about 2/3 reported an improvement in one of abdominal pain, bloating, diarrhea, nausea, or fatigue. About 40% of patients following a gluten free diet reported less severe or less frequent flares. Contrary to those positive results, a different survey study found that there were no significant differences in disease activity, hospitalization, or rate of surgery in IBD patients following a gluten free diet versus those who were not. 

A few different organizations and guidelines have weighed in on the gluten free diet and IBD:

• The International Organization for Inflammatory Bowel Diseases currently states that in IBD “there is insufficient evidence to recommend restriction of wheat and gluten.”

• The Crohns and Colitis Foundation states that “some IBD patients have found that a gluten-free diet reduces their symptoms, but researchers have not proven that it reduces IBD inflammation.”

• The Asain Working Group guidelines on diet and inflammatory bowel disease state that “a gluten-free diet is not of a proven value in patients with inflammatory bowel disease.”

There are also some confounding factors when discussing gluten free diets. Gluten is often paired with fructans in foods, which are a type of fermentable carbohydrate that is associated with gastrointestinal symptoms. One study showed that 80% of patients with suspected non-celiac gluten sensitivity couldn’t be diagnosed after a gluten challenge.2 This points to the possibility that something found alongside gluten might be the culprit. Fructans offer a convincing alternative cause for why some might experience GI symptoms while eating gluten containing foods. Indeed, research has shown that in patients with suspected non-celiac gluten sensitivity, eating fructans was associated with more gastrointestinal symptoms when compared to eating gluten.3

Positive Gluten Sensitivity Seriologies and the Impact of Gluten Free Diet in Patients with IBD

When I first noticed this study as a part of DDW I was excited. I think that the study design is well thought out. The term “Celiac serologies” means that antibodies to proteins associated with consuming gluten were found in patients’ blood. These patients have immune systems that have already falsely identified these specific proteins as foreign invaders. By studying patients with positive celiac serology, the researchers were able to look at the effect of a gluten free diet in the patients that were likely to experience the greatest benefit from going gluten free.

The goal of this study presented by Dr. Maria Moomal Dahar was to determine if there were any differences in clinical outcomes between IBD patients with positive celiac serologies following a gluten free diet compared to those who were not following a gluten free diet. Out of the 1537 patients IBD patients looked at, only 89 had positive celiac serologies. Of these 89 patients, 29 reported adhering to a gluten free diet.

One interesting finding was that of the 89 patients with positive celiac serologies, those who were not on a gluten free diet were more likely to have a high ESR (measure of inflammation) and eosinophilia (associated with inflammation and infection).

Based on this study, the authors recommend testing for celiac serologies in patients with IBD. They also suggest a trial of a gluten free diet in IBD patients with confirmed celiac serologies. 

My Closing Thoughts

It is so important that research is being done to evaluate the gluten free diet in IBD. Any time where a large majority of patients report improvement following a dietary trend, that should at least warrant some investigation into whether or not those improvements can be replicated in a randomized controlled trial. I am thankful for researchers like Dr. Dahar and her colleagues who are making efforts to further our knowledge in regards to the gluten free diet and its use in IBD. 

One thing I also want to note is that the majority of therapeutic diets studied in IBD (IBD-AID, CDED, EEN, and SCD) all exclude gluten containing grains. Some of these diets show real promise in treating inflammation or alleviating symptoms of patients with IBD, and it is a trend worth noting. On the contrary, the mediterranean diet has also shown similar promising results, and includes gluten containing grains. 

In my opinion, current literature is frustratingly inconclusive. Like many nutrition topics, there isn’t enough evidence to be able to make any strong recommendations one way or another. In light of that, I think that the best approach is the same one I echo all the time: Find out what works for you individually. You know your own body better than any study, scientist, or doctor ever will. So if you notice feeling better on a gluten free diet, maybe that is something you decide you want to continue even if the evidence isn’t quite there yet to show benefit in IBD patients.

"You Don't Look Disabled"

“ You don’t look disabled. 

“You don’t look disabled” but some days I couldn’t go to school because I couldn’t leave my bathroom.

“You don’t look disabled” but I have to go to the hospital every two months for the rest of my life. 

“You don’t look disabled” but I have tried seven different medications for the same disability within three years. 

“You don’t look disabled” but some days my joint pain was so bad I couldn’t even pick up a pencil. 

“You don’t look disabled” but every time I walk into a hospital I am comforted and terrified at the same time.

“You don’t look disabled” but I used to sleep only three hours every single day for weeks because my steroids made it impossible to sleep.

“You don’t look disabled” but some days I can feel my throat close up from suppressing my anxiety.

“You don’t look disabled” but I have sat on my bathroom floor feeling like I couldn’t breathe because the nausea from my medications was so overwhelming.

“You don’t look disabled” but I am. ”

I have never understood why people tell me I don’t look disabled or that I don’t look sick. What is disability supposed to look like? Disability is not singular. Disability does not look one way. Disability is diverse. 

I do not want to prove I am disabled to strangers or people I know.

Though the intention behind this phrase may be to compliment me, I never feel complimented. I feel small. I feel like a fraud. I feel like I am faking my disability in some way. I feel like I do not know my identity. 

It is time for people with invisible disabilities to stop being doubted for being disabled. It is time for everyone to change their perspective of what disability looks like. We must listen to others’ stories. We must stop being bystanders when people with disabilities are doubted. 

Disability is not a bad word. It is not offensive. We should not be afraid of it. 

I am disabled and I am proud. 

This article is sponsored by Lyfebulb.

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

Communicating IBD

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

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

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

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

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

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

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

1. On Badtameezi

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

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

2. On Comparison

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

3. On Self-Invalidation,

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

4. On Unsolicited Comments,

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

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

Digestive Disease Week: New Concepts in Optimizing Bowel Prep for Colonoscopy

Needless to say, attending Digestive Disease Week (DDW) was a phenomenal and educational experience. Getting the opportunity to sit in on sessions led by medical professionals was an invaluable experience that will forever frame my way of thinking about IBD. DDW allowed me to expand my knowledge in a safe and inclusive space; some topics can be taboo, which can be a barrier to learning, but DDW truly allowed me to feel comfortable being able to synthesize, understand, and communicate complex medical information. I am forever grateful for this amazing experience! Dr. David Johnson, Dr. Douglas Rex, and Dr. Jack Di Palma were all amazing moderators and they helped expand my understanding of how we can modernize the almost universally hated colonoscopy prep experience. In this session, they discussed important aspects of bowel preparation in colonoscopy, including the efficacy, safety, and patient preferences of different prep options, overcoming barriers to bowel prep, and patient engagement and education.

As people who live with IBD, colonoscopies are routine to us, but as explained in the session, there haven’t been many advances in making the colonoscopy prep process more tolerable. As explained, “bowel preparation is often suboptimal, resulting in poor outcomes.” Speaking from personal experience, I have always felt like I’ve been prescribed too much prep, which has always made the experience even more daunting and unpleasant. Colonoscopy preparation should not be seen as one size fits all. This is where communication with your medical team is extremely important. During the presentation, the doctors gave a number of specific points related to modernizing colonoscopy prep. Some of these points include: 

Involve nurses and pharmacists in the process

• Having an interdisciplinary team can reinforce prep success. For example, having your pharmacist or nurse review all steps, discuss different prep options, as well as give you tips and tricks can lead to a more successful prep. 

Increasing engagement and education 

• This section was particularly interesting for me as the doctors discussed different methods to increase patient engagement and education. One way was establishing a system where patients can opt in to receive reminder and educational texts during the prep process to ensure a higher prep success, understanding, and quality. 

Moving toward a Low-Residue Diet as opposed to a clear liquid diet

• The rigidity of the traditionally prescribed clear liquid diet can actually reduce the quality of prep. Having more leeway during colonoscopy prep and switching to a low residue diet can increase success and patient satisfaction. For example, instead of exclusively doing broth, gatorade, and jello we can slowly switch to a more tolerable diet that consists of whole foods like soft scrambled eggs, toast, bananas, and mashed potatoes, etc.

In conclusion, this session highlighted many ways that colonoscopy prep can be modernized and more successfully tolerated. We are all familiar with the prep process, the long nights, extreme hunger, and discomfort are just a few of the many feelings and symptoms we experience. It’s important to note that how well each person tolerates the prep is very individualistic; there is no universal remedy, which is why staying communicative with your medical team is extremely important. 

I am especially excited to see further research over this topic so we all can have better colonoscopy prep. One of the overall goals, as stated by the doctors, is reducing the stigma of the terrible prep experience. We all deserve to have as smooth of an experience as possible, and there is so much hope and innovation waiting! Now, let’s hope a flavor-less prep is on the horizon, too. 

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.