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.

Friendship and IBD

“Friendship is the hardest thing in the world to explain. It’s not something you learn in school. But if you haven’t learned the meaning of friendship, you really haven’t learned anything.” – Muhammad Ali

I started with this beautiful friendship quote because I’m going to talk about Friendship in this article. Friendship is a very unique relationship. Friends are not related to us by blood, even though they won’t have any expectation in the relationship they are always with us to support, to help, and to find purpose and meaning in our life. For me, they’re one of my major pillars in my life. The emotional bond between my friends and I helped me to recover back my strength, especially during pre and post-surgery. In this article, I would like to share how my friends helped me to build back my strength during my early days of being diagnosed with Crohn’s.

My friends have been good listeners. Whenever I have problems, the first group of people that I look for are my friends, not even my family, because my friends are willing spend their time to listen to my problems and my feelings. They’re fully present when I start to talk. There are no distraction such as phones, people, or work, and they give their 100% focus to what I’m saying. I was in campus during the time I was officially diagnosed with Crohn’s. I was depressed, and they were the ones l looked for to talk to and to share of my health condition with. Once I uttered everything I wanted to say, they kept silent for a moment and then they started to give their suggestions. The point is, they listened and digested my problem before giving their best solution. I think this is the best part of friendship because they didn’t jump to conclusions. Instead, they listened to me first.

They cheer me up with great humor. My friends do understand laughter is one of best medicines to keep me healthy. My friends, unlike myself, are funny and their sense of humor always bring me happiness. In our conversations, there are always some funny jokes that make me laugh. Even when I’m in a bad mood, they are able to make me laugh and refresh my mood and cheer me up. In fact, friends with a good sense of humor can make our world feel good. Whenever I spend time with them, I never have a thought of pains, depression, or that I have Crohn’s.

Another great quality of my friends is that they care about my daily activities. This is an important quality that my friends show toward me that I really appreciate in them. Caring friends take a lot of dedication and love to keep the relationship always warm. My friends often call me to ensure I’m doing fine. They accompany me for my endoscopy appointment every year. They take extra caution on my food intake whenever we go out to eat. There are many more things that they do for me. And, most importantly, they also like to use positive words to keep encouraging me. They’re say encouraging words such as “you can do it Sara”, “you must be strong” to motivate me so that I can keep moving on in my life. Their words give me more confidence and strength whenever I need it. Their words lead my thoughts and emotions to positive ways.

Friends provides a place for us to share and to discuss our feelings. In fact, friends are the best emotional medicine for people like us to overcome from depression and lift us up and encourage us to take a leap of faith to change our life into something better.

Digestive Disease Week: Efforts to Understand Disease and Improve Management of Inflammatory Bowel Disease

DDW is one of those experiences I don’t think I will ever forget. Whenever I used to think about how researchers are out there studying Crohn’s Disease, it always felt detached. Like they are faceless people in labs hundreds of miles away. That changed with DDW. I could see the men and women working enthusiastically towards the betterment of my life. I could see their faces, I could hear their excitement, and suddenly research wasn’t this abstract idea any more. Research is now Ashwin Ananthakrishnan, Pabitra Sahu, and the countless other researchers who spend their time and resources in pursuit of a better life for people with IBD.

I could probably write about each and every IBD session at DDW, but I have chosen to focus on the session titled Efforts to Understand Disease and Improve Management of Inflammatory Bowel Disease. This was one of the first sessions I attended at DDW, and it covered a wide variety of topics. Within this session, two presentations stood out: Higher Resource Utilization and Economic Burden Associated With Fatigue in Inflammatory Bowel Disease and Randomized Clinical Trial: Exclusive Enteral Nutrition Versus SOC for Acute Severe Ulcerative Colitis.

Higher Resource Utilization and Economic Burden Associated With Fatigue in Inflammatory Bowel Disease

Fatigue can be one of the most debilitating parts of having IBD. Most of us have had days where everything we have planned becomes derailed because our bodies are exhausted. There is this idea that fatigue is a normal part of life for people with chronic diseases. Like it is expected, and therefore it isn’t worth addressing. I certainly know that fatigue gets put on the backburner at most GI offices. I’m not even sure if in my 5 years as an IBD patient that I have ever had a discussion about fatigue with my doctor.

I think that most IBD patients would agree that fatigue has not only a large impact on their disease, but on their life in general. This disconnect between how providers and patients view the importance of fatigue is challenged by the research presented by Dr. Ashwin Ananthakrishnan. He discusses the findings from his study focused on determining the economic burden of fatigue in IBD patients. Before we get into his findings, it is important to set the stage. The study presented was a Retrospective Nested Case Controlled Study.

• Retrospective - looks at the past.

• Nested - The case control was taken from a specified group of people

• Case Controlled - IBD patients with fatigue were matched with IBD patients without fatigue.

The study looked at patients with both CD and UC who were newly diagnosed (<12 months). There were 21321(!) patients in the fatigue and non fatigue groups. Outcomes compared include rate of:

• IBD surgery

• Hospitalization

• ED visits

• Outpatient Visits

• Total, medical, and pharmacy costs

The researchers looked at the above outcomes from all causes and from IBD specific causes. That is just to say that they wanted to determine if the hospitalizations, ED visits, and outpatient visits were because of the patient's IBD or some other outside factor.

So what did they find?

That is a significant difference in every. Single. Outcome. IBD patients with fatigue are more likely to be hospitalized, visit the emergency department, and have outpatient visits than those without fatigue. What did that mean for the costs? The researchers also found that IBD patients with fatigue had higher direct costs than those without fatigue. This was true in both mild and moderate/severe disease, showing that even in patients with mild disease fatigue increases healthcare costs.

This is huge. A lot of the time, in America at least, healthcare is focused on cost-benefit analysis. That is to say: if the insurance company spends the money, is the benefit great enough to justify that expense. This study shows that leaving fatigue untreated in IBD patients results in significantly greater expense, which in turn means that there is a huge benefit in making sure that fatigue is treated in IBD.

Overall, the study presented here reinforces the importance of treating fatigue in IBD patients. Fatigue appears to be a source of economic burden that warrants an increased attention and interventions. For IBD patients, hopefully this means that our providers have increased awareness of how fatigue impacts our day to day lives. Now that there is an understanding that fatigue is a problem, the logical next step in my mind is for research to determine how best to address fatigue in IBD. For now, frequent naps and an unholy amount of coffee will have to do.

Randomized Clinical Trial: Exclusive Enteral Nutrition Versus SOC for Acute Severe Ulcerative Colitis

The next study from this session I wanted to hone in on discussed exclusive enteral nutrition (EEN) in severe ulcerative colitis. EEN is when patients are fed enteral formula either by mouth or through a feeding tube for a period of time. It has been shown to promote mucosal healing, correct dysbiosis, modulate the immune system, and improve nutritional status. Currently, the best research for its use is in the pediatric Crohn’s Disease population, where it is considered a first line therapy. I am a huge proponent of the need for more research in EEN, which is why this study is so exciting.

The goal of this study presented by Dr. Pabitra Sahu was to evaluate + EEN vs standard of care for acute severe ulcerative colitis. Both groups received steroids treatment, so the main difference between groups was diet: EEN vs a normal diet in the standard of care group. EEN consists of peptamen, which is a semi elemental (partially broken down, easier to digest) formula. The study evaluated 62 patients, 32 in the EEN group and 30 in the standard of care group. The authors primarily wanted to know if EEN had a significant effect on corticosteroid failure, with a few secondary outcomes including measuring markers of inflammation and fecal microbiome analysis.

As far as the primary result, this study found that there was no significant difference between the EEN group and standard of care group when comparing the rate of steroid failure. This doesn’t take into account that 5 patients in the EEN group were found to be intolerant to EEN, and thus had to stop therapy early. When the authors compared the EEN group without these patients to the standard of care group, a significant difference in steroid failure rate was observed.

As far as secondary outcomes, there are a few worth mentioning. The EEN group had a significantly shorter duration of hospitalization when compared with the standard of care group. The EEN group also had greater reduction in CRP (measure of total inflammation) from day 1 to day 5 than the standard of care group. 

Analysis of the fecal microbiome showed that there was a significant difference in the distribution of four bacterial genera. One bacteria, Erysipelotrichaceae (who thought that name was a good idea?), was increased in EEN. Erysipelotrichaceae has been linked with increased inflammation and disease activity in pediatric IBD, so it appears to be beneficial that the EEN group had an increased number of this genus. 

To conclude, this study showed that there is a possible benefit to a short course of EEN alongside steroid treatment to improve steroid response rate, decrease duration of hospitalization, decrease inflammation, and modify the microbiome. While this study might not be strong enough to warrant using EEN for each and every severe UC patient, it at least provides another option to discuss with motivated patients looking to improve their chances responding to therapy. I know that if I were to be hospitalized I would want to do everything possible to increase my chances!

A Letter to My Crohn's Disease

You know that I like to write.

Today you have your honor again.

I want to confess to you that you can happen to me, but you do not define me.

When my mind is clouded by logical thoughts, I like to express to you in irregular lines the emotions that overwhelm me.

You taste complacency complacently and wrongly, but the only reason I write to you is because it works therapeutically in me.

Addressing you as if you exist while I am struggling to annihilate you is redemptive.

Immediately after I feel invulnerable.

Today I have set you up in the steepest corner of my mind and I observe you.

You changed me a lot.

You forced me to live in the arms of uncertainty.

I look you straight in the eyes, I confront you.

Today I am strong, because of you I have experienced one by one all my fears.

You are so close to me that I can smell you.

You know I had a hard time accepting you.

I spent so much time struggling to keep you away from me.

I invested in denial, I place between us the right distance and the right pretense.

I denied you countless times even though I recognized you from your look in the mirror.

I was overwhelmed from within.

Υou soaked my eyes, you occupied my body.

You mortgaged my life for no reason.

You trapped me with a loan of hope between before and now and ignored the aftermath.

You crumpled my wings.

I woke up confused, I think confused, I write confused.

Time flies.

I find that everything and everyone goes without asking me.

I know you will think I am strong, I went through a thousand waves to be here.

Every second, I define myself, I realize my existence.

I was angry, I refused, I accepted, I fight.

And because the most important thing in difficult times is to always find a reason to smile, I smiled and touched the scar.

The one that is always there to remind me that I was once received, the one that I found the strength and healed.

What is the strongest proof that although I was received, I fought with all my strength and I succeeded.

What I carry in my body as a precious medal of strength.

The one that will always motivate me with a smile to exorcise my fears and start for the new victory.

Full of stubbornness.

I endure and I do well.

I fight because that's all I learned and I win.

I win and in every victory I stand up.

I have learned to fall and get up.

Every time I reach an end I smile timidly and carve out a new beginning.

There are experiences that are experienced completely alone.

Experiences full of lost days and awkward moments.

A little more and you know I will rise stronger.

Digestive Disease Week: Diagnosing and Managing Pediatric IBD in the 21st Century

I am grateful to have had the opportunity to attend Digestive Disease Week (DDW) 2021. Learning about diagnosing and managing pediatric IBD in the 21st century allowed me to reflect on my own experiences as a pediatric patient through a different perspective. Two presentations stood out to me in this session.

To begin with, the first presentation that stood out to me,“Therapeutic Drug Monitoring with Newer Biologics”, was led by Dr. Lissy de Ridder who highlighted ustekinumab, vedolizumab and infliximab treatments. Dr. Ridder emphasized “treating-to-target” pediatric patients because of the lack of treatment options for this patient population. 

Dr. Ridder explained what Anti-TNF therapeutic drug monitoring (TDM) has taught us about secondary loss of response: 

1. A secondary loss of response that is immunogenic is categorized by a decrease of the drug and an increase of antibodies in the patient. 

2. A secondary loss of response that is pharmacokinetic is categorized as a decrease of the drug and no antibodies in the patient. 

3. A secondary loss of response that is pharmacodynamic is categorized as a sufficient level of drug and no antibodies in the patient but the patient does not respond to the drug. 

The course of action for these different types of secondary loss of response according to Dr. Ridder: 

1. A patient who has an immunogenic secondary loss of response to a drug will have the drug exchanged for a new drug in the same class and an immunomodulator will be added to the treatment plan.

2. A patient who experiences a pharmacokinetic secondary loss of response to a drug will have the dose of the drug increased and/or decrease the intervals that the drug is received. 

3. A patient who experiences a pharmacodynamic secondary loss of response requires that the drug be exchanged for a drug of a different class or surgery. 

Additionally, Dr. Ridder and her team conducted a study analyzing trough levels of young pediatric patients using infliximab and found that 75% of these patients were underdosed at the beginning of their treatment. As a result, these patients also did not have the recommended trough level and therefore responded less to infliximab. These results reveal that young pediatric patients responded less to infliximab because of underdosing.

Because of Dr. Ridder and her team’s study, the Medical Management of Pediatric Crohn’s Disease ECCO-ESPGHAN Guideline has changed to:

“In patients on anti-TNF agents, early proactive therapeutic drug monitoring [TDM] followed by dose optimisation is recommended. LoE:2 Agreement: 87.5” 

Other highlights of Dr. Ridder’s presentation were:

• Vedolizumab is more successful in UC patients compared to CD patients and is used after failure to anti-TNF in patients 

• Vedolizumab should not be used in patients with acute severe colitis 

• Ustekinumab should be used for CD patients who experience failure to anti-TNF and also patients who have severe psoriasis 

The second presentation that stood out to me, “Results of the First Pilot Randomized Controlled Trial of Faecal Microbiota Transplant for Pediatric Ulcerative Colitis” was led by Dr. Nikhil Pai who highlighted patient interest in FMT and the barriers to FMT.

Dr. Nikhil Pai stressed that this trial was a result of a “significant patient and parent interest and emerging FMT data”. The study compared patients who received FMT treatments vs. patients who received placebo treatments for six weeks. The patients involved in this study were “UC patients between the ages of four to seventeen, had active disease, no CDI and no significant change in Rx in four weeks”. 

The study highlights:

1. Fecal calprotectin significantly decreased in FMT recipients compared to placebo group

2. FMT is beneficial six months after initial treatment 

3. Future studies of FMT should consider at-home treatment or oral encapsulated therapies due to the lack of feasibility of the study 

4. Supports FMT for pediatric UC patients 

5. Need for more FMT research 

Overall, I am excited to see future studies about new treatments for pediatric patients with IBD and how these treatments will transition into adulthood. 

Navigating Relationships with IBD

As someone chronically ill, feelings of guilt, FOMO, and loneliness can be all too familiar. The severity and unpredictability of IBD can take a toll on the relationships you have with others, including romantic interests, friendships, family members, and coworkers. When i was diagnosed with Crohn’s Disease at the young age of twenty one, i quickly became frustrated that my poor health was holding me back from participating in classic twenty something year old activities. My unpredictable and debilitating symptoms made it difficult to leave my house, to follow through with plans, and to eat and drink at restaurants and bars. At the beginning of my journey with Crohn’s Disease, I was overwhelmed with feelings of loneliness and guilt when I had to miss out on my college friends' activities. I kept my symptoms and diagnosis to myself, not really allowing any of my friends to understand how to include and support me. 

Sharing your IBD diagnosis with your partner, friends, and family is a terrifying and overwhelming experience. Naturally, we strive to hide our vulnerability, but I hope to deliver advice through my own personal experience to help nurture your relationships and ensure you receive the support you deserve. 

My best advice is to share your IBD diagnosis with the people you surround yourself with. We cannot control how others react to our diagnosis, but we can control what we share with them. I often tried to hide my illness from others, and then became frustrated when disagreements arose over my frequent cancellations from flares as well as feelings of loneliness from no one understanding what I am going through. It’s important to allow those close to you to know what you are dealing with. Remember, someone that loves and cares about you will not be scared by your diagnosis, they will want to support you and be there for you in times of need. The first thing you need to do is allow them the chance to show up and support you. Be honest about how your disease affects you, whether that be generalized as last minute cancelations or going in-depth about the symptoms you experience. 

Remember your self worth. You may have inflammatory bowel disease but IBD does NOT define you. You have amazing, unique and loving qualities that make you amazing with or without IBD. Whenever I have trouble separating myself from my IBD diagnosis, I write down 5 things that I love about myself, whether that be my passion for helping others, my love for animals, or anything else that makes me, me! 

Ask for help. Be honest about your needs as someone with IBD, especially when flaring or on colonoscopy, infusion, injection and surgery days. Your friend or partner might not know how to best help you. Try to be honest and communicate your needs and wants to your partner, friends, and family to be best supported.

Create boundaries. Every person with IBD has different needs. Be honest about what you like and don’t like. Create boundaries with friends and family, especially about unsolicited advice or anything that may bother you. Has everyone heard the ‘you should try ___ (sub: yoga, veganism, meditation, etc.) and you will be cured’? My advice to create boundaries without offending a loved one is to express your appreciation and thanks but highlight how every person with IBD is different and that advice like this negatively affects you. Again, put yourself first. If someones advice or actions are bothering you, speak up and share that with them. Most of the time, people are only trying to help and this will help guide them to most effectively support you. 

As someone dating with IBD, the psychological aspect that can join a chronic illness, along with physically feeling sick, can create obstacles in relationships. Communicating with honesty will allow all parties to a relationship to feel loved, wanted, and respected. I truly hope these tips will help you navigate and make the most out of your relationships.

Meal Replacements and Oral Nutrition Supplements

Sometimes eating sucks. When my body hurts, I'm tired, and my gut is bloated, the last thing I usually want to do is add fuel to the fire by eating a meal. This is an unfortunate situation to be in because eating is one of those things we kind of have to do to survive. Luckily, there is a way to meet our needs without really eating. Enter the oral nutrition supplement. Calorie dense nutrition shakes designed to give you all the vitamins and minerals you need for livin’ in as little volume as possible. You can down one of these bad boys in under a minute and not have to worry about figuring out how you might fit an entire meal in your distended abdomen.

There are a lot of different nutrition supplements on the market, and it can be difficult to try to figure out which to buy. There are so many factors to consider, it can almost be overwhelming. In this article, I have tackled a few of the more common factors people consider when looking for supplements. Hopefully I have been able to provide some clarification on the differences between some of the common choices for meal replacement shakes.

Calories

The amount of calories I look for in one of these supplements depends on why I am using it in the first place. Am I trying to replace a meal? Then I would probably reach for something with a higher amount of calories. I usually try for at least 250 calories per shake, but closer to 500 calories is probably better. If I am using the shake to replace a snack, maybe 200-300 calories would be more desirable. 

Some nutrition supplements come as a powder that you can mix with water or another liquid. The benefit of these supplements is that you can add as much powder as you want and customize the amount of calories to the situation. Products like Modulen IBD, Huel, Garden of Life Raw Organic Meal Shake, and Super Fuel all come as mixable powders. Garden of Life is one of the lowest calorie options I have seen, coming in at 120 calories per serving. 

Most ready to drink supplements also have higher calorie options available. Ensure and Boost both make higher calorie versions of their regular nutrition shakes. You can usually tell a higher calorie shake because it will have the word “plus” in the name, i.e. Ensure Plus or Boost Plus. The big downside of these higher calorie versions is that a lot of the extra calories come in the form of sugar.

Fat

Fat is a tricky one. Often demonized, fat plays an important role as a source of energy, absorption of certain fat soluble vitamins, and managing inflammation. Certain fats are even essential, which means that we must get them from our diet. The type of fat in nutrition supplements matters. In most supplements, the fat content will be from vegetable oils. Animal fats are unusual or minimally used due to their tendency to be solid at room temperature.

Certain fats in vegetable oil, such as the Omega 6 fatty acids, are sometimes mis-labeled as pro-inflammatory. While these fats can be used by the body to create inflammatory molecules, research has shown that omega-6 fats are associated with lower or unchanged markers of inflammation. If you are somebody who is concerned about these fats, choose a supplement higher in monounsaturated fats such as Orgain or Huel. Looking for the words “high oleic” in the ingredients list is a good way to know that the oil used is high in monounsaturated fats. One supplement, Super Fuel, actually lets you add the fat to your shake yourself, so you can choose the exact type of fat you want!

Carbohydrates

There are a lot of considerations when looking at the carbohydrates in nutrition supplements. Some of the important things in my opinion are the sugar content, presence of artificial sweeteners, presence of maltodextrin, and fiber.

Sugar is an interesting one. The International Organization for the Study of Inflammatory Bowel Disease (IOIBD) says in their guidelines that there is insufficient evidence to recommend any specific change of intake of complex carbohydrates or refined carbohydrates or refined sugars and fructose. Therefore, any reason to limit sugar would have to be based on the known effects of high sugar consumption on heart health, gut health, weight gain, and other markers of health. Many of these supplements are high in added sugars, so it might be prudent to look for some of the lower sugar options such as Super Fuel, Huel, Orgain, or Garden of Life.

Some supplements contain ingredients that might be harmful in IBD patients. Specifically, maltodextrin and artificial sweeteners. Some of the low sugar supplements, such as Premier Protein, use artificial sweeteners like sucralose to replace sugar as a source of sweetness. Most supplements found in stores, including Ensure, Boost, and store brands such as Equate contain maltodextrin as a source of carbohydrates. In the IOIBD guidelines, the researchers note that it may be prudent to limit intake of both maltodextrin and artificial sweeteners. The authors also note, however, that the evidence for maltodextrin is theoretical and mostly based on animal models. Nutritional therapies that involve consuming nutrition supplements with maltodextrin have been found to be effective in IBD, so the jury is still out on maltodextrin.

Fiber is also a hot topic in IBD. Many foods considered healthy contain fiber, but many IBD patients who are flaring consider fiber to be something that aggravates their disease. Many of these supplements contain very small amounts of fiber, usually between 1-2 grams per serving. Some supplements, such as Huel, Kate Farms, and Super Fuel contain a higher amount of fiber. The general consensus from what I have researched appears to be that if you tolerate fiber, more is better. Like many other factors in IBD, fiber seems to be something to consider on an individual basis. Of note, Walmart’s brand Equate was the only supplement I looked at that had 0 grams of fiber per serving.

One thing to note is that some supplements include blends of fruits, vegetables, and other plant compounds. Orgain, Garden of Life, and Kate Farms all include these special blends, likely to try to mimic the benefits of eating whole foods. Other supplements, such as Huel and Super Fuel are made primarily from whole foods.

Protein

The protein needs of an IBD patient are increased during a flare. Protein is needed to help repair damaged tissue and maintain muscle mass, among many other functions. I think it is important to make sure that the nutrition supplement you choose has the protein your body needs to function optimally.

Most supplements have enough protein to meet your body's needs. A little trick I use is to try to shoot for 20% of calories from protein. You might need to whip up your phone calculator in the store, but the math isn’t too hard. First you would take the grams of protein and multiply it by 4, because there are 4 calories in every gram of protein. Then, all you need to do is divide the number of calories of protein by the total calories and multiply by 100 to get the percent!

Let's do an example with Orgain’s Nutritional Shake:

Looking at the bottom, we see Orgain has 16 grams of protein per serving.
Step one would be to multiply 16g by 4 to get the number of calories, which would be 64 calories of protein.

Step two, would be to divide the number of protein calories by the number of calories in a serving, which can be seen at the top of the nutrition facts label.

We would do 64 calories divided by 250 calories and get 0.256.

The final step, to get a percentage, would be to multiply by 100 to make that number a percentage. So, .256 multiplied by 100 is 25.6%. 

25.6% is more than 20%, so Orgain would pass my little test!

Some of the higher protein supplements out there are Huel, Ensure Enlive, and Premier Protein, and Garden of Life. It is important to note that if you aren’t in a flare, your protein needs are likely no higher than the rest of the population. 

Carrageenan

Carrageenan is an emulsifier used to help the ingredients in shakes mix smoothly. It has also been shown to cause a variety of negative effects in animal models, such as increased blood in stool, increased inflammatory markers, and lesions in the bowel. For these reasons, and some small scale human research, IOIBD also states that it may be prudent to reduce intake of processed foods that contain carrageenan in both UC and Crohn’s Disease. Most of the supplements found in stores, such as Ensure, Boost, and store brands such as Equate use carrageenan in their nutrition supplements. If carrageenan is something you wish to avoid, you can usually locate it at the bottom of the ingredients list. You can see it is the last ingredient in Ensure Plus.

To Conclude

I wish I could add more detail, but I don’t want to break your scroll wheel. The most important thing to do when looking for an oral nutrition supplement is to take a look at the nutrition facts label and make sure you are comfortable with the nutrition content and ingredients in your shake. I usually try to look for higher protein and fiber, and lower added sugars while avoiding sucralose, maltodextrin, and carrageenan. Oh and the shake has to taste good too. Could you imagine not wanting to eat anything and reaching for a shake that didn’t even taste good? Neither could I. Considering all that, I usually go for Orgain nutritional shakes. They fit my goals as far as cost, taste, and nutritional content are concerned. 

Another option is to try to make your own shake in a blender. It can be pretty easy to toss some oats, a banana, and a few scoops of peanut butter together and have a tasty, nutritionally dense smoothie to sip on. You even save some money that way too! At the end of the day, store bought shakes or homemade, oral nutrition supplements can be a great way to give your body the fuel it needs to function when you don’t feel like making or eating a meal.

The Day I Got Vaccinated for COVID-19

I have completed the vaccination with both doses of the COVID-19 vaccine.

The day I had the appointment for the first dose of the vaccine, I woke up early and got ready as if I was going to a great event.

As an immunosuppressed individual, the last year was full of restrictions and prohibitions.

The organization of vaccination in Greece is exemplary for the data of the country.

When I arrived at the vaccination center, I said my name at the entrance and they led me to the place where the vaccination would take place.

After I was vaccinated, I stayed at the vaccination center for about 30 minutes and then left for home.

For the next few hours, all I felt was a slight discomfort at the injection site.

The days passed quickly and the day of the second dose came.

I woke up early again, got ready and went to the vaccination center.

 This time when I finished the vaccination and while I was waiting for the necessary time to pass after, they informed me that after the second dose I might have a few more side effects.

And indeed it was true, as for the next 24 hours or so I had chills, low-grade fever and fatigue.

These symptoms, however, did not make me regret my decision to get vaccinated.

My vaccination was completed with joy and emotion. I did it not only for myself, but for the whole society.

Vaccines have brought us all in front of a mirror, it is almost a historical fact. We are all witnesses and companions of a scientific miracle.

However, there are people who have learned to talk only about individual rights with complete disregard for the collective, who think that the "I" can survive without the "we". These people are actually few, but they manage to channel fear through misinformation and fake news to a large part of the population.

I did it not only for myself, but also for those around me, and for those who died because they were not lucky enough to have a vaccine when they became infected with the virus.

When a Patient Becomes a Caregiver

As an IBD patient, all my life I only knew to seek care from the outside world. I was always getting fostered and protected by my family and loved ones, allowing me take the shelter of being a patient. I never once had a thought that one day I would also be placed in that situation of taking the role as a caretaker. The universe always has a different plan for me. It tells me to expect the unexpected when everything seems settled and going smoothly in order to make my life more adventurous.

Year 2021 started on a positive note, then the severe flare I suffered through last year slowly showed some mercy upon me and started to settle down. I was at the verge of reaching back to the stage of normalcy. But things didn’t go as I had hoped. There was a lot of upheaval and overwhelming situations waiting for me, even before I could breathe a sigh of relief. One such instance was being infected by the corona virus and living the quarantine life (an experience I have penned down in my other article). Another one which I am sharing with you all now: The situation in which I had to assume the role of a caregiver and take upon the responsibility of my family.

My father, who is now 66 years of age, was a very healthy and a disciplined person all through his life. Suddenly, one night he returned back home limping and thudded on the sofa. This was something very unusual for me and my mom, who just stood watching him numb. He was yelling with pain and anxiety. I stood clueless because I had never come across such a situation. Every time it used to be me who used to shout, scream and yell with pain and frustration making my parents anxious and stressed out. My mom had recently taken her first dose of vaccination; she was feeling very weak and was unable to come to my dad’s rescue.  I was so confused as to what to do, whom to contact, and what action to take. I didn’t even know what first aid to apply to make him comfortable and relieve him from the pain. Finally, I just gave him some painkillers which helped him sleep. One night passed, and in the morning, he woke fresh and was back to normal. But it didn’t last long. After a month, the same thing repeated. I was so confused that I never attempted to assess the root cause. Later, the pain started to show up more frequently which completely restricted his movement.

This was when I was forced to take up end to end responsibilities of the house, for which I was completely not prepared.  Not being able to understand which doctor or specialist to consult, I felt overwhelmed, burdened, and even trapped as the current pandemic and imposition of lock down made the situation even worse. I felt unprepared and unable to manage the responsibilities and feelings that came with it all. I felt pressured by other family members to provide care, despite having little or no strength nor bandwidth to do so. I could only oversee my near future dealing with a crisis of financial worries, difficult decisions, uncertain future and unexpected and unwanted lifestyle changes. Fear, hopelessness, guilt, confusion, doubt, anger and helplessness all took a toll on my physical and mental health. 

As I am someone who wishes to see the good in every experience, I consider this a learning experience. It made me stronger and prepared me to face the worst. Here is what I learned from the past few months, which I do not wish any other fellow IBD mates to struggle with. They say, every person has a unique story, and every story has the power to touch the lives of the readers, their family members, loved ones, friends, coworkers, and the greater community. That’s why I felt it was important to share my story and let the readers understand the do’s and don’ts under these circumstances:

3. Know what you can’t do and never try to do it all alone.

First, we must know what we cannot do and most importantly, we must never try to do it all alone. It’s always better to reach out to others whom we think can do it for us. In my case, with too much pride, I wanted to manage it all alone. I felt that as a daughter, it was my responsibility to take care of the family without burdening anyone else. This was really painful and stressful. We need to set realistic limits on what we can do. For instance, if you are in a flare and if the other person is too heavy for you to lift, you may be able to help them roll over in bed, but should never try to lift them all alone or catch them when they fall. We may end up pressurizing our intestine and create more severe or worse damage for ourselves. There are ways we can safely help a person sit up or walk but we have to learn to do it without hurting ourselves.

2. Learn to ask for help.

Allowing others to help can take some of the pressure off and give us time to take care of ourselves. Often family and friends want to help but may not know how or what we need. We need to talk to our loved ones, so there is a clear understanding on what we are able to do and what external support we are seeking. My stubbornness had never allowed me to let my own siblings know what was happening at home. Everytime they called up i used to say everything was fine. But if I had expressed my concerns, things would have been much easier for me to handle.

Talking to others who are going through the same experiences canreassure us that we are not alone. Human connections can help us stay strong, let people know what we need, and what motivation they can offer. We cannot and should not try to be responsible for all.

3. Practice Patience and Exercise Compassion

During these times, the relationship with other family members can be tenuous and difficult. At times I wondered “why me?” as caretaking was a stressful set up, involving great sickness, making it is easy for tempers to flare and patience to run thin. So, patience is the most important virtue one should develop. As IBD patients, we can understand this well- we understand that the person who is suffering in pain is not always in complete control of their actions and, with that in mind, we can give the situation extra time to calm down and respond with ease if there are some heated moments.

It is obvious that these situations can easily create frustration within all the members at home. Frustration, however, leads to a strained and fractured relationship, which is not right for the home setting. My dad used to hesitate to express his sufferings completely. Instead of allowing frustration to take hold, we should seek to exercise compassion. Compassion for yourself and others allows people to soften their hearts toward another person and get to a place of honest communication.

Such incidents can also lead to work-related issues like missed days, low productivity, and work interruptions. The stress of managing responsibilities on top of worrying about keeping our job can be overwhelming. Dealing with these issues is important and the best way is to keep at least our reporting manager informed of what is happening and how we are dealing with it.

It’s ok to feel angry, helpless, frustrated, hopeless and show resentment. It is normal - these are our feelings and we should learn to accept them. There is nothing wrong with feeling that way. No matter what we do, we will very likely come to a point where we feel that we have failed in some or the other way. But we have done the best we can. At times we may even feel that we could have handled the situation better or done something a better way. At these times, it’s important not to blame ourselves. We should find a way to forgive ourselves and move on.

Mental health matters a lot. We need to Meditate, take breaks, choose a quiet area, close our eyes for 5 minutes, listen to our inner self, breathe while we visualize being in a serene place with birds and waterfalls. Listen to soothing music and get as much rest as we can. By using positive affirmations we can also help to ease out stress.

After all, it is utmost important to take our medicines on time, manage our doctor appointments, get done our regular checkups and follow ups as per the schedule, eat and sleep well without being drowned with exhaustion by managing these responsibilities.

As a concluding statement, I would wish to bring light on the importance of treating our caregivers with love and dignity. We often tend to take for granted our parents who are our primary caregivers throughout our IBD journey. If you are the one being cared for, encourage your caregiver to share with you and with others the difficulties he or she is facing. It will take only one friendly gesture to make a significant difference in that caregiver’s life. Encourage them to find that friend in whom he or she can confide..Help them find one friend whom he or she can ask for help and support as “Troubles shared are troubles halved”.

Traveling with IBD: Tips On Navigating an Airport

Whether we’re celebrating an accomplishment, going on a vacation, or in my case, visiting a city before a big move, traveling is a rewarding and often necessary aspect of our lives. A topic that is not widely discussed is traveling while living with a chronic illness(es). We have to be more mindful about certain aspects of traveling that other abled-bodied people never have to consider. This was my first time traveling post diagnosis, which was extremely anxiety producing and almost dissuading in a sense. Why do I have to take extra precautions? I quickly learned that this form of self-destructive thinking was only preventing me from being present. 

I recently traveled to the beautiful city of Pittsburgh, Pennsylvania to take a tour of campus before I start my masters program, as well as getting a feel for the city overall. Throughout my trip, I made sure to record a few helpful tips, tricks, and pieces of travel and airport related advice that would make the overall experience less stressful for my fellow members in the IBD community. 

Traveling is a privilege that chronically ill people deserve to be afforded. Exclusionary language and barriers paired with a lack of resources and information can make the idea of traveling quite daunting, but these tips should make the reality of travelling more palatable. With the tail end of the pandemic emerging, we all deserve the opportunity to travel as comfortably and healthily as possible!

Tip #1: Store your medication in your carry on 

It’s important for us to have access to all of our medication at all times. I found it very helpful to store all of my medications in my carry on bag, in a small pocket that is easily accessible. This way it is easy to keep track and organize all your medicine so you can stay on schedule. 

Tip #2: Get a collapsible water bottle

As IBD patients, we know that we are at higher risk of dehydration, so we need to have full access to water. But wait, you can’t bring water into an airport, right? There’s a loophole! I bought a collapsible water bottle before my flight and I stored it in my carry on. It’s small, super convenient, and you can fill it up once you leave security. After your water bottle is filled, you are then able to take it on the plane. 

Tip #3: Check the airport map to find all bathroom locations

We all know the feeling of needing emergency access to a restroom, and this feeling is no different in an airport, if anything it's exacerbated. I found it extremely helpful to locate all the bathrooms before I arrived at the airport so I knew which ones were closest to my terminal. Many airports have detailed maps scattered around, and the Apple maps app also gives you a detailed layout as well! 

Tip #4: Stress management is key

Traveling can be very stressful on our bodies. In my case. Stress and anxiety are triggers for my symptoms, so finding healthy ways to mitigate that stress is super important. We all have our own unique ways of reducing stress, but I found that packing headphones and listening to music helps tremendously. Chewing gum is another simple and useful stress reducing tip! 

Tip #5: Be sure to get an AirBnb or hotel close to restaurants that cater to your dietary restrictions 

Trying new restaurants, eateries, and bars is an integral part of the traveling experience, but it can be rather difficult for those of us with IBD since we have many dietary restrictions. My tip is to research restaurants, super markets, or local grocery stores in advance. This helped me so much during my trip; preplanning can make all the difference. We don’t deserve to be robbed of the full experience, so researching options beforehand can increase overall satisfaction. 

While there are so many other tips that I could provide, these five were the most pertinent. Utilize these tips to ensure happy and safe traveling! 

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.

Digestive Disease Week: Epidemiology & Natural History of IBD

DDW 2021: Epidemiology & Natural History of IBD

         The Digestive Disease Week virtual conference kickstarted on Friday, May 21, 2021, with 5 societies (AASLD, AGA, ASGE, DDW, SSAT) taking part and over 15 different tracks. In the Inflammatory Bowel Diseases track, I joined the Epidemiology & Natural History of IBD session. Dr. Sunanda V. Kane, from Mayo Clinic, Rochester MN, opened the session, with the aim to understand how Inflammatory Bowel Diseases (IBD) are distributed through race, ethnicity and gender in the United States. The session hosted six speakers, covering the following sessions:

Session #1: Dr. Edward Lee Barnes – RACIAL AND ETHNIC DISTRIBUTION OF INFLAMMATORY BOWEL DISEASE IN THE UNITED STATES

This study used PCORnet (National Clinical Research Network) data as well as US Census data (2015).

Through this study, we learnt that:

1. Adult and pediatric patients with Crohn’s Disease (CD) or Ulcerative Colitis (UC) are more likely to be White and non-Hispanic.

2. Both adult and pediatric populations of Black/African American and Hispanic ethnicity are less likely to have a diagnosis of CD or UC as compared to White patients.

3. Comparing adult to pediatric populations, across race, shows that IBD diagnoses is rising among non-White populations, while staying more or less constant for White populations.

4. For drawing further inferences, it is important to conduct more research on health equity patterns among IBD patients, with an improved understanding of the demographics and epidemiology of these varied IBD patients.

Session #2: Dr. Fernando Velayos – PREDNISONE, BUT NOT BIOLOGICS OR IMMUNOMODULATORS ARE ASSOCIATED WITH SEVERE COVID-19 OUTCOMES: A COMMUNITY BASED STUDY

IBD management includes a series of immune-system-altering medications. In the context of COVID-19, this study sought to find out whether certain management techniques/medications put IBD patients at a greater risk for developing severe COVID-19 outcomes.

This study suggested:

1. The use of oral prednisone prior to SARS-CoV-2 diagnoses, is associated with hospitalization, ICU admission, and death. Thus, during the pandemic, doctors are advised to minimize outpatient steroid use where possible.

2. Immunomodulators and biologics are not associated with severe COVID-19 outcomes.

3. IBD is not an independent risk factor for severe COVID-19 outcomes.

Session #3: Dr. Mehwish Ahmed – CROHN’S DISEASE, ANXIETY AND DEPRESSION, AND BASELINE C-REACTIVE PROTEIN LEVEL PREDICT RISK FOR INCIDENT IRRITABLE BOWEL SYNDROME-LIKE SYMPTOMS IN QUIESCENT INFLAMMATORY BOWEL DISEASE

Approximately 41% of patients with inactive IBD report having IBS-like symptoms, leading to a lower quality of life. This study aimed to identify risk factors associated with IBD-like symptoms in patients with inactive IBD.

The study suggested:

1. Those with moderate to heavy alcohol use, comorbid anxiety or depression, use of psychotropic medications, increased C-reactive protein and the presence of rheumatologic intestinal manifestations are at higher risk for developing IBS-like symptoms.

2. Crohn’s disease, comorbid anxiety or depression, and increased CRP levels are independent risk factors.

Confirmatory data is required for further analysis.

Session #4: Dr. Mohamed Tausif Siddiqui – PREVALENCE AND OUTCOMES OF ALCOHOL USE DISORDERS IN PATIENTS WITH INFLAMMATORY BOWEL DISEASE

Alcohol has always been a potential trigger for IBD. However, more than half of the total number of patients with CD or UC, who identify as current drinkers, are moderate or heavy drinkers. This study sought to find out whether Alcohol Use Disorder (AUD) is associated with in-hospital mortality, keeping age, gender and ethnic trends in mind.

This study observed:

1. Irrespective of CD or UC, IBD in general, is affected by AUD, causing in-hospital mortality.

2. The risk factors associated with AUD are: (1) Age bracket [51-65], (2) Gender [Male], Race [Caucasian].

Session #5: Dr. Poonam Beniwal-Patel – RACIAL AND GENDER DISPARITIES EXIST IN INFLUENZA VACCINATION RATES AMONG PATIENTS WITH INFLAMMATORY BOWEL DISEASE

Patients with IBD are observed to have overall lower vaccination rates than the general population and are associated with an increased risk of infection, especially vaccine-preventable diseases (VPD). This study determined if disparities in race or ethnicity exist within immunization rates of patients with IBD.

The findings were:

1. Black patients had significantly lower rates than white patients for influenza vaccinations.

2. Female patients had significantly higher rates than their male counterparts for influenza vaccinations.

Future studies can assess the causes for these disparities, and advise on strategies to combat vaccine hesitancy. In the context of COVID-19, this research will be especially important for IBD patients.

Session #6: Dr. Chung Sang Tse – LOW HEALTH CONFIDENCE IS ASSOCIATED WITH SIGNIFICANTLY MORE HOSPITAL-BASED, ACUTE HEALTHCARE UTILIZATION IN PATIENTS WITH INFLAMMATORY BOWEL DISEASE: A NATIONAL SAMPLE OF OVER 18,000 ADULTS

Patient engagement and activation with regards to their health is a growing concern for positive engagement with healthy lifestyle choices and lessened emergency department (ED) visits and hospitalizations. Health Confidence is a proxy measure for this and is influenced by a multitude of factors, including personal beliefs, socioeconomic status, health literacy and disease specific knowledge.

This study showed that

1. The health confidence of patients who had an ED visit or hospitalization were lower than those without an ED visit or hospitalization.

2. A health confidence score of 7 (range 0-11 on Likert scale) appeared to be an inflection point for ED visits and hospitalizations, and thus for score less than 7, they should be considered at increased risk for the same.

3. Health confidence was not different between UC or CD patients.

4. “Interventions that increase health confidence may reduce high-cost, acute healthcare utilization.”

Digestive Disease Week: Role of Diet, Lifestyle, and Environment in IBD

I thoroughly enjoyed attending Digestive Disease Week’s session on Role of Diet, Lifestyle, and Environment in Inflammatory Bowel Disease. Let's start from the beginning and understand why studies surrounding diet, lifestyle, and environment are so important in understanding IBD. 

IBD affects nearly 3 million Americans and over 200,000 Canadians. IBD is an immune-mediated disease that occurs due to certain, unknown environmental exposures in those with underlying genetic predispositions. Research on environmental exposures is needed to discover what environmental factors may contribute to an individual receiving an IBD diagnosis. This research will not only create an overall improved understanding of IBD, but also contribute to reducing the onset of IBD as well as cures for IBD. 

Ultra-Processed Foods and Risk of Crohn’s Disease and Ulcerative Colitis 

Two speakers in this session I found extremely interesting, the first being Dr. Chun-Han Lo. Dr. Lo reviewed his study on ultra-processed foods and risk of Crohn’s Disease and ulcerative colitis. The Western diet is thought to increase the risk of IBD through changes in the gut microbiome which can trigger immune function when compared to the Mediterranean diet. 

Foods were separated into four categories from least to most processed:

1. Unprocessed 

2. Processed culinary ingredients 

3. Processed foods

4. Ultra-processed food products

Dr Lo explains that right now, it is widely known that higher consumption of ultra processed food products is associated with all-cause mortality, cardiovascular disease, metabolic syndrome, obesity, and cancer. Agents and thickeners, that are often added to ultra-processed food products, were also examined. The study aimed to examine the associations between ultra-processed food products and the risk of incident of Crohn’s Disease and ulcerative colitis. 

The results indicated that higher consumption of ultra processed food products, specifically ultra processed grain foods and fat and sauces, was associated with an increased risk of Crohn’s Disease. Additionally, emulsifiers and thickener containing foods increased the risk of Crohn’s Disease. No subgroups had an association with risk of ulcerative colitis. This differentiates the impact food may have on Crohn’s Disease versus ulcerative colitis, furthering complexifying IBD. Further studies are needed on the effect of ultra processed food products in patients with established IBD may be warranted.  

Although you may not be surprised by the results, studies like these are so important to allow room for more niche research and continue to allow researchers and doctors to understand the WHY behind IBD. As a Crohn’s Disease patient with many food intolerances, I am excited to see research surrounding diet and quality of food. There is little research backing the quality of food, and many suggest following a specific diet such as low FOD-map, gluten free, dairy free, among many others. It’s extremely exciting to see additional research surrounding foods, specifically processed versus unprocessed foods. My hopes are that this study can contribute to encouraging people to eat better quality foods and, in turn, reduce Crohn’s Disease diagnoses. Further, my mind jumps to future research covering whether reducing ultra processed food products after an IBD diagnosis could help treatment and management of disease. 

Development of a Composite Environmental Score to Predict Age of Onset and Outcomes in IBD

Dr. Nidah Shabbir Khakoo spoke on the development of a composite environmental score to predict age of onset and outcomes in IBD. Specifically, Dr. Khakoo focuses on the fact that many environmental exposures associated with IBD are increasingly seen with Westernization. The study aimed to explore the relationship between individual environmental exposures and the age of onset of IBD. This study is extremely important in order to come to the understanding of what can cause a person to be diagnosed with IBD earlier in life, rather than later. 

As someone with IBD, I have frequently wondered what environmental exposures in my life have caused my IBD to have an earlier onset? Why did I receive my IBD diagnosis in my early twenties compared to others that are diagnosed in their fifties? These studies are crucial to understand potential causes for earlier disease onset and overall understanding of IBD. 

This study was administered on adult patients previously diagnosed with IBD. An environmental survey that queried age-dependent and lifetime exposures to various environmental factors were given among the participants to identify the environmental exposures each subject has had throughout their lifetime while looking at the age of their diagnosis. It is important to note that this study had a large number of hispanics, an underrepresented group in IBD research. The study looked at the age of disease onset, specifically comparing hispanics vs non-hispanics and Crohn’s disease vs ulcerative colitis patients. 

Earlier Ulcerative Colitis Onset: 

• US Born 

• C-section Delivery

• Fewer bathrooms 

• Decreased housing density 

• Ex-smokers

• No farm contact 

Earlier Crohn’s Disease Onset:

• US Born

• Water source - plastics 

• Fewer bathrooms 

• Decreased housing density 

• Smokers 

Dr. Khakoo shares that the environmental score presented explains a greater amount of the variation in the age of UC onset than Crohn’s Disease onset. Additionally, weighted and not-weighted scores did not predict disease location, presence of extraintestinal manifestations, likelihood of surgery or hospitalization, or number of biologics needed. Certain environmental exposures, such as bottle feeding, showed opposing effects in ethnic groups with IBD, leading to assume that cultural and socioeconomic factors may influence disease onset. 

These results give a baseline that other research needs to build off of. It is becoming increasingly evident that ethnicity differentiates environmental factors contributing to IBD and more research is needed to understand these differences. I’m looking forward to hearing of future studies regarding this subject and am hopeful more nuances regarding environmental exposures and the timing of IBD onset will be discovered.

It was great to hear from multiple experts about diet and environmental factors relating to IBD. I think that the data so far shows that there is a lot of work to do to understand what environmental factors contribute to IBD. I am looking forward to seeing future studies dive more in-depth to discover the causes of IBD. I am incredibly grateful to have heard from Dr. Chun-Han Lo and Dr. Nidah Shabbir Khakoo, and am confident these studies will have a large influence on future research on Inflammatory Bowel Disease. 

World IBD Day: What's Something You Wish People Knew About Living With IBD As a Young Adult?

"What’s something you wish people knew about living with IBD as a young adult?"

Savannah:

As a young adult with IBD, I wish others knew how hard it is to balance nurturing our health while also taking part in classic twenty something year old activities. Not only do we have to focus on our health everyday but we are also navigating the world, discovering who we are and what we want to be. IBD doesn’t define us and our goals, but it sure does impact us on a daily basis and creates significant barriers. 

Andre:

Having IBD as a young adult robs you of fully experiencing your youth. Most of us are diagnosed between the ages of 18-26. These are formative years that will influence the rest of our lives, but we are not afforded the opportunity to experience the same highs as our healthy peers. This does produce a high level of perseverance, but the isolation and FOMO will always be present. 

David Gardinier: 

I wish people knew how much energy is at a premium for us. I feel like with IBD, I have a set amount of energy each day. If I use all that energy up during the day in my internship, I don't have any left for the rest of the day. This is especially true when I go out and play ultimate frisbee. I wish everyone else knew that I am not just being lazy halfway through the game, but that I actually get tired twice as fast as everyone else even though I am doing the same amount of work. It can be frustrating knowing that my disease will hold me back from performing the same as other people the same age I am. The more people that know how much fatigue impacts young adults with IBD, the more empathy will exist surrounding this disease in our population.

Jennifer:

Tackling a chronic illness as a young adult is overwhelming, to say the least. To fight a disease that can neve be cured, while simultaneously trying to figure out who you are and what you want to do with your life -- well, that’s hard enough as it is. I hope people can be compassionate towards young adults with IBD, realizing that we are battling a fight they may not always see.

Sara:

Many people have the wrong conception about young adults who live with IBD. They think having IBD is karma, especially for those from Asian countries because their life is filled immensely with strong cultural and religious beliefs. This thought that IBD is caused by Karma is unacceptable and should not be entertained. Living with IBD is not karma; in fact IBD patients are warriors. Young adults with IBD are brave and super strong people. In today's world, they face so many challenges in their daily life, such as family, relationships, finances, and social pressure. But still they never give up in overcoming those challenges and prove their life is beautiful.

Nathalie:

I wish people knew that living with IBD as a young adult does not make me too weak to handle things. Sometimes people keep things from me to protect me or because they think I’m going through too much to hear about someone else’s life. I believe these intentions are honestly kind, but it’s okay to ask for my support. My normal is different from a lot of other people’s normal and that's okay. I don’t feel like I’m going through too much and I don’t feel weak, my IBD isn’t tragic, it is just a part of my life. 

Kumudini:

I just wish that people knew it's normal for any human being to use washroom the number of times one wishes. Moreover, nobody is voluntarily willing or would like to time pass there. Its absolutely normal to miss appointments and give us the space of silence. We did not invite this disease by unhealthy eating habits. We never would like to refuse any yummy food, it's just that we love our intestine so much and we do not want to dump it with something which doesn't suit it.

Vasiliki:

Getting diagnosed with a chronic illness such as IBD is always a difficult condition. It is even more difficult when you receive this diagnosis at a young age. You suddenly find yourself dealing with issues that have to do with your health; you try to find ways to improve your health and balance the daily life of a young person with the life of a chronic patient. This is not always a straight line, sometimes you encounter obstacles and difficulties, but with will and effort you overcome them and move forward. The most important thing for me in this whole journey is to find allies who can support you and help you effectively. Αnd of course in no case do not give up your dreams. Τhe difficult days will come and go, but life is in front of you even if sometimes it is cloudy. Remember that you are more than your illness!