AIBD 2021: Session III: C - Innovations and Approaches in IBD Care for Children With IBD

Disclaimer: This article was written after attending AIBD 2021; all information is presented as an attendee to the conference, not as a presenter.

While I was looking forward to pretty much every presentation at AIBD, I was especially interested in Session IIIC: Innovations and Approaches in IBD Care for Children With IBD. With an all star lineup of presenters including Dr. Eric Benchimol, Dr. Lindsey Aldenberg, Dr. Sandra Kim, Dr. Andrew Grossman, and Dr. Kevin Mollen, this session was a must see for me. Not only were the presenters themselves exciting, but their topics explored the growing world of pediatric IBD management. There was a lot of information, so I’ve decided to summarize the presentations in this session and highlight the key findings and takeaways.

Pediatric IBD Year in Review

Presented by Eric Benchimol, MD, PHD, FRCPC

Dr. Benchimol had the herculean task of presenting a yearly review of 2021 in just a 20 minute time slot, and he nailed it! Some of finding over the last year include:

• COVID 19

  • Lower risk of severe COVID-19 in patients on a biologic

  • Higher risk of severe COVID-19 in patients taking steroids

  • Patients reported high amount of fear regarding developing COVID-19 and attending medical facilities

  • Evidence suggests a third dose of the COVID-19 vaccine will likely be needed to maintain antibody levels in IBD patients

• Growth in children with IBD has improved over the last 10 years

• The racial disparity between steroid prescriptions in black and white children has lessened dramatically over the past 10 years

• The STRIDE-2 publication better defines targets of treatment in pediatric IBD

Diet and IBD: Translating Research into Real-Life Practice

Presented by Lindsey Aldenberg, DO

Dr. Aldenberg presented on my favorite topic: diet and IBD. I was so excited to hear this talk, and even more excited to share the key takeaways with you below:

• The incidence (number of new cases) of IBD is increasing worldwide, and closely mirrors industrialization

• The genetic contribution to the development of IBD is at most 30-40%; this leaves environmental factors, including diet, to make up the remainder

• The gut microbiome is dysbiotic (abnormal) in patients with IBD, and diet plays a key role in shaping the gut microbiome

• Ultra-processed foods have been associated with development of IBD in recent studies, and this may be due to food additives that disrupt the microbiome and the strength of the gut barrier

• Exclusive Enteral Nutrition is an effective therapy in pediatric IBD and is often used as an alternative to corticosteroids or as a bridge to other therapies, medication, or whole food therapeutic diets.

• The results of the DINE-CD study, which compared the mediterranean diet with the specific carbohydrate diet, showed that there was no significant difference between the diets when looking at clinical remission and inflammation.

• Dr. Aldenberg’s take home points from DINE-CD were that the mediterranean diet may be a great option for IBD patients, and both the mediterranean diet and specific carbohydrate diet might have a greater effect on symptoms than inflammation

• The Crohn's Disease Exclusion Diet was effective in lowering measures of inflammation in IBD, and there appears to be a response as early as 3 weeks in patients on the Crohn’s Disease Exclusion Diet or Exclusive Enteral Nutrition 

• There may be a subset of IBD patients who have disease that responds well to diet therapy, and this needs to be further explored with more research

Cost and Access to Care in Pediatrics

Presented by Sandra Kim, MD

Dr. Kim discussed the urgent need for better access to care for IBD patients and put a spotlight on one of the largest barriers for patients: cost. Some of the highlights from the talk are:

• If patients cannot access their doctors, treatments, and medications, then the advances we are making matter less and have less impact

• Cost is the biggest delay in receiving care as reported by patients

• Per patient costs are greater in children vs adults with IBD

• The costs for IBD patients has risen primarily due to pharmaceutical costs, of which biologics are the largest contributor

• The group most affected by financial stress are families within the 50-100k earning bracket

• Delays in prior authorizations have lead to an increased use in steroid use, which is a medication that pediatric IBD providers try to avoid prescribing

• The concept of Step Therapy/Fail First by insurers is harmful to our patients. This policy requires patients and providers to use mandated therapies rather than those that the doctor/providers believes will be most effective. This can lead to delays in the patient getting the therapy that works best for them, and may result in a longer and more difficult path to remission

• Advocacy for change in cost and patient access can be done at a individual, state, and national level

• The “Safe Step” act of 2021 will allow for a clear, transparent appeals process to request exemption among other advances. Keep an eye on this bill

• Social media is a platform we can use to advocate for lower costs and improved patient access

Don’t Be Late to the Party: When to Call Your Surgeon

Presented by Kevin Mollen, MD

Dr. Mollen touched on the importance of getting the surgeon involved early in the care of IBD patients. Some of points I found most important are:

• Many studies highlight that surgery is a major cause of anxiety for patients with IBD

• Patients often view surgery negatively prior to the operation, but afterwards view surgery positively; patients often wished that they had considered surgery earlier

• A multidisciplinary approach to surgical care has been shown to improve preoperative optimization of surgery, decrease surgical complications, and likely improve patient satisfaction

• An early consult with the patient allows the surgeon to:

  • Set expectations

  • Lower anxiety

  • Optimize the patient preoperatively

  • Plan the surgery at the optimal time

• A poor nutritional status prior to surgery is associated with prolonged hospital stay, postoperative complications, and delayed recovery of bowel function. Short term nutritional interventions may be used to improve nutritional status prior to surgery

• Any patient with UC that is admitted to the hospital for an acute flare should receive a consult from the surgeon due to the high likelihood of needing surgical interventions

• In summary, it is key to communicate with the surgeon to develop a plan based on the patient’s goals to improve patient and parent satisfaction. Surgeons are a key part of the IBD multidisciplinary team

Law School and IBD

This article was written by Savannah Snyder from Canada.

Undergrad is already a daunting and tiring experience - intense classes, homework, exams, socializing, self-care. It is insanely difficult to balance it all. Throw a chronic illness such as IBD into the mix, and it becomes even harder. As many of you know, IBD can take over your life and can make working towards your goals a challenge.

My undergrad experience was full of ups and downs, from being severely ill dealing with stomach aches, joint pains, fatigues, hospitalizations, doctors appointments and more. But, I’m here to remind you and what I wish I heard someone with IBD tell me, is that you can accomplish your dreams, even with IBD.

Ever since high school I wanted to be a lawyer. I dreamed of going to a top law school. I was intimidated by the process and knew it was extremely competitive. When I was diagnosed with IBD in my fourth year of university, I thought that goal might be out of reach for me. I had to withdraw from a semester of school and move back home. I thought “how would someone like me, with holes in their transcript and withdrawn classes, be accepted to law school? How will I be able to handle a rigorous program and career while simultaneously dealing with IBD?”

Looking back, I realized I was dealing with IBD my entire undergrad experience. Instead of gaining the freshman fifteen in my freshman year, I lost fifteen pounds. I knew something was wrong each day but continued to ignore my symptoms, until I was forced to face reality and was hospitalized with a severe Crohn’s Disease diagnosis. I was scared that if something was wrong with me, I wouldn’t be able to work towards my dreams. If I was ignorant regarding what I was feeling, it wouldn’t be true.

When I withdrew from school and returned to my family home, I put my body first. I slowly came to realize that I might as well try to reach my goals of becoming a law student. I began to study for the Law School Admissions Test (“LSAT”), and spent time studying in my bed when my energy levels allowed. I started my first biologic, Humira, was hopeful it would work in time, and I booked my first LSAT 2 months away. I contacted the LSAT admissions team and received accommodated “stop the clock” washroom and pain breaks for my test. As the test date crept up, it became obvious that Humira was not working. I had to increase my prednisone dosage. I was nervous, scared, and began to lose hope. I was upset that Humira wasn’t working for me and was scared about writing a test under these conditions. The increase in prednisone brought nausea, brain fog, mood swings, irritability, fatigue, and more. When my doctor told me I had to switch off of Humira, it was too late to cancel my test. So, I decided to write it anyway. I ended up receiving my first Stelara infusion the day before the test. I told myself, this test will be a practice - and that whatever happens… happens.

I am not telling you to support the hustle culture and ignore your body. I gave myself grace around my results. I told myself if I felt negative symptoms in any way while writing, I would stop and go home. But, I was able to do it.

I wrote the LSAT and did OK and then ended up writing it again the next fall. Stelara ended up being the medication that I’ve been on ever since. I applied to law school as an access student - highlighting the experiences I’ve been through and how dealing with an illness like IBD will make me a better law student and lawyer.

I returned for my last year of school and was able to receive accommodations for exams and classes. I took a smaller class load to balance self-care and healing myself along with my goal of graduating. I’m proud to say I was accepted to my dream law school and have just completed my first semester. Although I have dealt with flares and sickness this past semester, I have reached out to accommodation services and received support. I have advocated for myself and been able to reach the dreams I had before my Crohn’s diagnosis.

I promise you, if there is something you want to do, it is possible. A life with IBD is full of spontaneity - you may never know what’s next. But, all you can do is try. Put your health first, always, but never give up on your dreams.

Photo by Polina Zimmerman from Pexels.

AIBD 2021: Embracing Novel Horizons With Intravenous Iron

Disclaimer: This article was written after attending AIBD 2021; all information is presented as an attendee to the conference, not as a presenter.

If you have inflammatory bowel disease, you’ve probably heard your doctor talk about iron at one point in time. Maybe you had to take iron supplements, or get an iron infusion because your levels were too low. Iron is a key nutrient for keeping our bodies healthy and running smoothly. Iron plays a role in physical growth, neurological development, cellular functioning, hormone synthesis, and most importantly transfer of oxygen to our muscles and cells. So if we are deficient in iron, can’t we just take a supplement? Not so fast. If that were true, there would be no need for an entire symposium on iron. There are a lot of different factors for your doctor to consider when looking for an iron deficiency and determining what treatment to use to correct it. In this article, I will take you through the wonderful presentation from AIBD 2021 covering these factors by Dr. Gary Lichtenstein, Dr. Stephen Hanaeur, and Dr. Millie Long.

One of the first topics, covered by Dr. Long, concerned iron absorption. Iron in the diet comes in two forms: Heme iron and Nonheme iron. Heme iron is found in meat, and is more readily absorbed. Nonheme iron comes from plant sources such as nuts, beans, vegetables, and fortified grains and is less readily absorbed. Dr. Long made the point that overall, we only absorb about 10% of the iron we actually eat. The average American diet includes about 7mg of iron from a mixture of heme and non-heme sources for every 1000 calories consumed. On a 2000 calorie diet, that would be about 14mg of iron per day. For reference, the recommended dietary allowance (RDA) for iron in males is 8mg per day, and in females is 18mg per day. We can see that most people get enough iron from diet alone, so why do people with IBD end up becoming deficient?

Iron deficiency is almost always due to blood loss, but can also be caused by a lowered ability to absorb iron (malabsorption) or not getting enough from diet. Unfortunately, one of the factors that can cause us to malabsorb iron is inflammation. Inflammation and blood loss are both relatively common in IBD, which leads to a scenario where we can easily become deficient in iron. If we are deficient in iron for a long period of time, we can develop anemia. Remember how earlier I said one of the most important roles of iron is in transporting oxygen through the blood? Anemia occurs in iron deficiency when our red blood cells shrink in size and aren’t able to carry oxygen as well to the rest of our body.

Iron deficiency can present in a lot of different ways. Some of the most common ways may be hair loss, cold intolerance, fatigue, and excessive consumption of substances with little to no nutritional value such as ice or cornstarch (often referred to as PICA). 

So, how is iron deficiency treated? Dr. Hanaeur presented on the two main options: oral or intravenous (IV) iron. Oral iron refers to an iron supplement in a pill form that you would take by mouth, while IV refers to infusing iron directly into the bloodstream through a vein. While oral iron can be convenient and cost effective, it may not be the best choice in active IBD because like we discussed before inflammation lowers absorption. Oral iron may also cause GI side effects such as nausea, flatulence, and diarrhea. I think many of us with IBD would agree that more GI upset is the last thing we need. 

IV iron on the other hand, achieves a faster response and is better tolerated than oral iron. IV iron can also have some adverse side effects, but they are less frequent than with oral iron and often do not involve the GI tract. Dr. Hanaeur also notes that IV iron doesn’t have the same issue of a low absorption that oral iron does. All of the iron administered through IV is available to be used by the body. This feature makes it a good choice during inflammation and when there is a large deficiency of iron.

Iron deficiency is common in IBD, and can contribute significantly to quality of life. It is important for both patients and providers to monitor for this deficiency and work together to correct it if found. 

Q&A: Diet and IBD with Registered Dietitian Kelly Issokson

Disclaimer: The responses from this interview are not meant to provide definitive professional, medical, or other advice to someone’s personal health.

On November 11th, I had the opportunity to host a Q&A with Registered Dietitian, Kelly Issokson, answering questions submitted by the CCYAN community. Kelly works primarily with IBD patients at Cedars Sinai in Los Angeles, and she is an expert on nutrition and IBD.

While I was glad to see many attend live, I wanted to summarize the information for any of the community who were unable to attend due to time zone differences or other barriers. Below are the questions I asked, a key quote from Kelly, some of my thoughts, and my summary of Kelly’s response. If you would like to watch the entire Q&A (I highly suggest it!), you can find the link here.

What is a Registered Dietitian?

“A Registered Dietitian is considered the nutrition expert, and somebody who if you have questions about diet or nutrition, the registered dietitian is somebody who you should definitely seek out.”

I always believe in questioning where we get our information. Anybody can write articles on the internet (even me, can you believe they let me do this?!). Understanding the credibility and validity of our sources is key to making sure we are getting accurate information. I really wanted the audience to feel comfortable that they could trust the information shared in this Q&A, and thus I think it was important that Kelly gave some background on why we can trust nutrition advice from a Registered Dietitian (RD).

In her response, Kelly discussed why a RD is the person to seek out for nutrition advice. She touched on the training necessary to become a RD and how the RD is required to stay up to date on the current evidence. Kelly also highlights the difference between an RD and a nutritionist: Anybody can call themselves a nutritionist, but a RD requires years of training and has up to date knowledge on dietary therapy for specific conditions.

What is safe to eat during a flare?

“Diet is going to be very personalized, especially when you are flaring.”

This question came from somebody who was recently diagnosed, and I think a lot of us can empathize with feeling lost on what to eat during our first flare.

Kelly talks about a variety of strategies for eating while in a flare. She touches on the role of texture modification in helping people incorporate fruits and vegetables even while flaring. An example she shares is having something like applesauce instead of apples. Kelly also talks about how lactose, a sugar found in dairy products, may commonly trigger symptoms. She suggests choosing yogurt as a good source of dairy, as the fermentation process yogurt goes through breaks down the lactose. 

Another strategy Kelly discusses is introducing new foods in smaller portions. This, she notes, can help give you time to see how your body will react to that food. Starting slow can also help give your gut bugs (microbiome) some time to build up. This is important, as they can help digest the food you eat and produce molecules that may help reduce inflammation! Finally, Kelly touches on how choosing low fat cooking techniques like baking, grilling, or broiling instead of higher fat ones like frying may help people expand their diet in a flare.

Do you recommend any specific diet while in a flare?

“It can be hard to know what to add or replace unless you are working with a registered dietitian or your medical team when starting a diet”

There is a lot of information on diets for IBD on the internet, and it can be tempting when you are feeling poor to pick one and run with it. I really like how this question is worded, because I think it shows a surrendering of control and a trust of the person who is the expert.

In response to this question, Kelly highlights some of the key diets with research to back them for IBD. She touches on exclusive enteral nutrition, the specific carbohydrate diet (SCD), the mediterranean diet, and the Crohn’s Disease Exclusion Diet (CDED). Kelly also makes the point that some of these diets may lead to malnutrition or micronutrient deficiencies when not done alongside your healthcare team and/or registered dietitian.

What are your thoughts on the vegan diet for IBD? Are vegan meats okay to eat while in a flare?

“There is not a lot of evidence supporting [a plant based vegan diet] in IBD...that being said, it can be a really healthy, well balanced diet. I think vegan meats are good, I think they are fine to have while flaring…that is where it comes down to personalization.”

I think this was a fantastic question from the audience. Vegans can develop IBD just like anybody else, so I think it is important to know whether they can continue their lifestyle even after diagnosis.

Kelly notes in her response that while there isn’t a ton of evidence to support it in IBD, it can be a healthy and balanced diet. She highlights the importance of respecting her patients personal preferences and values. Kelly also talks about the different types of remission, and how even if you start a specific diet and feel good you should still be following up with your doctor to make sure that the inflammation is also improving.

In talking about vegan meats, Kelly discusses the differences between a highly processed vegan meat and one made from whole foods. She talks about the importance of variety for getting all of the different phytonutrients, vitamins, and minerals the body needs to stay healthy. Overall, Kelly notes that vegan meats are fine to have when flaring, but to keep the idea of personalization (how YOU respond to a food) in mind.

What advice do you have for dealing with the anxiety around eating?

“This is a very common experience from people and it is a very natural response...so this is something that, you know, working with a dietitian and even a psychologist can really help you to re-establish those positive connections with food.”

I was really excited to hear Kelly answer this question, as this is something that I deal with often. As somebody who does fall into that category of having a lot of food restrictions, I know just how daunting it can be when trying new foods.

Kelly highlighted how this can be a normal response, especially if your disease isn’t controlled well. She notes that this is something to bring up with your doctor, and that getting the support of a dietitian and/or psychologist can really help in reestablishing a healthy relationship with eating. One piece of advice she had was to really sit with those feelings and explore them. Figure out why you feel that way. Kelly also talked about introducing foods alongside a friend for support and on the weekends instead of the weekdays.

How do you rediscover the joy of eating when you’ve lost it?

“It goes hand in hand with active and uncontrolled inflammation in the body. So once that kind of calms down your experience with food is going to be more enjoyable, more positive.”

This is definitely a big one. I just listened to a webinar where an IBD patient shared that she “eats to live” rather than “lives to eat”. We all want to be excited at mealtimes and not have it feel like a chore.

Kelly discusses the role of active disease and inflammation in making it challenging to enjoy eating. She notes that it is important to have somebody to share these feelings with and lean on as support. Kelly also talks about the role of a food journal in helping find foods that you enjoy and work well with your body.

How do you balance “healthy” nutrition with a gut sensitive to fiber?”

“I would challenge you to dissect that preconceived notion of what’s healthy and what isn’t...a healthy diet is one that meets your medical needs and brings you joy.”

I was really excited to hear how Kelly answered this question. I wrote an article earlier this year about what a “healthy” diet is and how it isn’t the same for everybody.

In her response, Kelly points out that when we remove the labels like healthy from our foods, it removes the shame and guilt around eating. She highlights how this can allow us to refocus and re-prioritize what is really important: how to nourish our body in whatever state it is in.

Closing Thoughts

Kelly also gave some key resources at the end about how to find a dietitian who specializes in IBD. She gives two places you can search: IFFGD and Eatright.org. It is important to find somebody who has the knowledge and experience in IBD to be able to best help you navigate diet to reach your goals.

Diary Entries of My Journey with Crohn's Disease

This article is by Vasiliki-Rafaela Vakouftsi from Greece.

Summary

I have recently written a diary book describing my journey with Crohn's disease.

You can read the whole book in Greek here.

The following are some parts of the book in English. Hope you like it!

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Monday, January 14, 2013

Another night of unbearable pain, I did not close my eyes, when I tried to got up I fainted from the pain...

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Saturday, January 19, 2013

I have no energy to do anything today.

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Sunday, January 20, 2013

I am so tired and in so much pain that I cannot stop crying.

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Wednesday, January 23, 2013

Another night with pain and diarrhea ...

Somewhere here I begin to realize that something is wrong.

I still remember the confusion and mixed feelings of that period. The period before diagnosis.

In all my life, I felt ashamed and embarrassed. I did not know what was happening to me, but I was sure that something serious was happening.

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The “explosion”

When I look back at my life, the life before the diagnosis, I experience a strange feeling, like the one you feel for a wonderful movie for which you do not remember the protagonist. I remember specific moments, such as the endless hours I spent in doctors and hospitals trying to find what was happening to me. Many of these moments I felt alone, I felt that no one understood me.

I had no idea what was going on and how the disease - which at the time I did not yet know existed - had silently found an environment to develop. In fact, I had not even heard of Crohn's Disease. It may take some time to come to terms with your new life and perhaps at first mourn your old life. There are some stages that it is normal to experience until one reaches acceptance. Denial, isolation, anger ... Sometimes it can all be a very lonely journey.

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The journey to diagnosis

My diagnosis was a long and devastating process. But even this is not uncommon, it happens many times. After I turned to several doctors without finding the coveted solution, a doctor was found who finally understood me. A little later I was diagnosed with Crohn's Disease.

The moment of diagnosis can be a shocking or even scary moment for all parties involved and not just for the patient.

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The adaptation

I have now achieved a fairly good level of acceptance of the disease. I felt I had to find a way to make my life according to the new data. There were times when I fell and maybe I will fall again, but I accepted this fall as a part of my life. But I never forgot that there is a hope. It is very important to maintain a "normalcy" when living with a chronic illness.

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The embarrassment and the doctor

Perhaps one of the most embarrassing things you will encounter on your journey with the disease is to open up to your doctor and reveal some more "special" things about you.  In most cases, the fear and anxiety of talking to your doctor about all of this tends to diminish with time and the relationship that develops between the patient and the doctor.

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The flashback

I had never heard of Crohn's Disease, I may have heard of it, but so far. I did not even know anyone suffering from it. Why should I assume that I suffer from it? Looking back now, well after my diagnosis, maybe if I had put the pieces in the puzzle earlier, my course would have been quite different.

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The relationship with the doctor

When you live with a chronic illness, you spend a lot of time in the hospital or with your doctor. For this reason, we often end up choosing a doctor who inspires trust and respect in us.

Your doctor should treat you patiently and respectfully, keeping your medical confidential and giving you as much information as possible about your condition. As a patient, however, you also have obligations to him, such as being honest about your symptoms and following the instructions given to you faithfully.

The doctor-patient relationship is a mutually beneficial relationship that develops over time. It is especially important to know that your doctor is willing to listen to you and even more important that he will understand you. An indifferent doctor will face an unhappy and anxious patient.

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The label

Every Crohn's disease patient is unique and different. The experiences of two patients are never identical. There are of course similarities in all cases, but each has its own unique course.

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The surroundings

I often try to remind myself that although I am sick, I am not the only person affected by my illness. It can be very difficult at first to take distance from what is happening to you and see how and how much your illness has affected those around you.

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Philosopher ...

No one can deny that Crohn’s plays an important role in your mind as well as your digestive system. My biggest challenge in my career so far is trying to maintain a good balance in both my physical and mental health.

Often the reminder and the embarrassing realization that "I will not get well" overwhelms me, as I have almost adapted to my illness, these days fortunately become more and more rare.

Crohn's disease is a constant challenge that you cannot overcome, just control. I now know the limitations of my body and I have accepted them all. I know I'll never be 'perfect', whatever that means, but it 's me and that' s all I have.

Accepting your body that changes and even more so the changes that the disease brings to your life, is easy in theory, but in practice it is a little more difficult.

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End...

Having Crohn's Disease has radically changed my life in many ways. Not necessarily for the worse, I can add. It was, is and will be a constant mental and physical challenge. It forced me to reconsider what is important to me and who I can count on. He showed me what really matters in life: health, love and happiness.

I have learned thousands of lessons and I am sure that I will continue to learn things along the way. It made me realize how many things I can do, as long as I have set goals. It surprised me for how much I can endure and how much I have already endured.

Photo credit: “White notebook and yellowpencil” by Dom J from Pexels.

Siblings with IBD

This article was written by Nathalie Garcia from the United States.

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My brother and I grew up with IBD. At completely different stages in our life, I watched my brother struggle with IBD throughout college as I was barely navigating middle school.

I’ve read many stories about various individuals’ stories of how they were diagnosed with IBD but I have not yet encountered a story like ours and that is why it is so important for me to tell it—so if there is another pair like us out there, they know they are not alone.

I think it’s pretty common for siblings to fight. My brother and I did, but not in the way you might think. Growing up, we definitely had our disagreements and still do to this day, but for all my life, my brother was more than a best friend; he was someone I knew I could rely on.

During the holiday season, we would anxiously wait for our mother to finish wrapping up all the presents so that we could take the empty cardboard rolls and battle until our makeshift swords broke. I never thought these battles were fair because my brother was not only significantly older than me, but he also towered above me. Still, I insisted on showing just how tough I was.

Over time, our battles disappeared and were stored in my childhood memories. Nerf-gun fights turned into studying in separate rooms and playing with our dog turned into playing on the computer and reading books.

I still remember the seconds leading up to when I found out my brother was sick. I was sitting in my room, my back against the frame of my bed, staring at my phone. I could hear my father’s footsteps stomp on each step on the stairs; the last one always creaking a little louder than all the others.

“Your brother is in the hospital.”

Maybe that’s what he said although I’m not entirely sure because I was so confused at the moment I could hardly focus on what he was telling me.

Walking into the emergency department and seeing my brother hooked up to all these machines he didn’t look like my brother. I didn’t know who this person was. Suddenly, everything started to make sense. The gradual separation of our hobbies, the persistent tiredness, his pale and hollow face only amplified by just how blue his lips were.

I didn’t know. I didn’t know. I didn’t know.

All I could think was how I didn’t know. I didn’t notice he wasn’t eating like my brother used to eat. I didn’t notice how much exhaustion he carried every single day. I didn’t notice because I was so consumed in my own life. I felt that my brother had been slowly decaying in front of me without me even blinking an eye.

We found out later that night my brother had something called ulcerative colitis. He was bleeding on the inside. His intestines were inflamed. He needed blood transfusions. I didn’t know what any of this meant. All I wanted was to know that my brother was going to be okay.

Instead, I was greeted with the news that whatever this thing was that my brother had, it was forever. There was no cure.

The following months consisted of sudden and extreme changes to our entire family. Staples in our usual diet were stripped away. No more Rockaletas, no more chamoy, tapatio, salchichas, jamón y huevos, no more Skwinkles, jalapenos, spices, chiles, arroz con leche, flan and a list that seemed to go on infinitely.

I used to complain all the time that we were reduced to tilapia and tumeric rice for what felt like every single day. I even naively used to respond to my brother’s sudden mood changes by thinking if I were to ever get sick, I’d never be like him. I grew jealous and angry that it seemed like my parents valued his well-being over my own and I couldn’t comprehend why my life had to change for him.

It’s actually ridiculous looking back at my younger self at how silly these thoughts were. Not that 13-year-olds have the best moral compass anyways. A couple years down the road, when I began exhibiting symptoms of my own, I remember thinking that this was the universe’s way of punishing me for all I thought and for all I said out of spite, out of loneliness, out of longing for my brother and for our family to be ourselves again.

I had a gut feeling it was IBD before my doctors even figured it out but hearing those words made me sink into my own body because I had watched this disease consume my brother and I knew it was about to consume me too. My whole life came apart into pieces in front of me with the knowledge of the steps that diagnosis took, discovering the right treatment took, the friends I would lose, and the hate I would receive.

But having my brother there changed everything because he was the one person who never made me feel different. IBD was a casual thing to us. Something we would joke about together, with the disapproval of our parents of course. Chronic illness wasn’t supposed to be something to joke about, but it was to us because we knew how ironic it was. We recognized how ironic it was to wish to never get sick, to wish to never have something that could change your life like that, to think that you were strong and be pushed down and corrected again and again.

All I wanted for my brother was to support him and I couldn’t do that because I could not possibly understand him at the time he was diagnosed until all of a sudden, now I could. Our bond became stronger for it.

It was easy. It was easy to tell things to my brother without even having to explain or sometimes without even having to say anything at all. From anger, grew a new understanding for one another and from jealousy grew an understanding that some things just do not work out the way you want them to. I know now that my emotions were a natural reaction to such fundamental changes to my life, it just took a long time to get myself there.

Despite the sadness that IBD brought onto our family, I am eternally grateful for IBD because, as much as I hate it, I am so glad it gave me the opportunity to bring my family closer to one another. My IBD brought me closer to the realities people were experiencing all around me that I couldn’t see immediately. I will treasure that fact alone forever.

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This article is sponsored by Lyfebulb.

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

Improving Communication between Patients and Practitioners

This article was written by Saravanan Nagappan from Malaysia.

Photo by:- cottonbro from Pexels

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Lately, I have found it difficult to spend a reasonable amount of time with my practitioner to discuss my health. Many of my friends came across the same problem with their practitioner. Most of the time it will be a new junior practitioner who attends our cases and they have zero knowledge about us which makes it difficult to communicate with each other. They do not know our medical history and do not even ask us to explain our medical condition. Because of this, they fail to assess our IBD problems properly. They are not able to communicate our health progress, treatment, nutrition and medicine side effects clearly. All this happens because of the poor communication between patients and practitioners.

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The Practitioner’s Role in Communication

First of all, I prefer practitioners to be able to allocate a reasonable amount of time with their IBD patients. The most common problem is that practitioners do not spend enough time listening. Today, many practitioners rush to achieve their daily patient quotas rather than providing a quality treatment or consultation with their patients. Practitioners should spend at least 15 to 20 minutes with their patients to ensure they fully understand their health history, health progress, current treatments and manage to address their patients’ concerns.

Apart from this, practitioners should reduce time spent using the computer and increase the time spent physically looking at the patient when they are consulting. This is important because patients want to know that their practitioner is listening to what they say. If the practitioner fails to do so, the patient may lose trust and interest with treatment and they might not be comfortable continuing to share after that. This can be damaging to patients, because this can lead to wrong decisions in their treatment which may lead to worse outcomes.

Practitioners also should not dominate the conversation. They should give space for patients to ask questions and allow them to share their concerns or opinions. By getting the patients’ opinion and their concern over any treatment, the process of patient care can be easy and more accurate. For example, by allowing patients to share their pain level, pain tolerance level, new symptoms, new type of recess; practitioners will be able to find more accurate solutions or find new phenomena they were not looking at before. This could improve appropriateness and accuracy in the treatment process and/or procedures; even helping to develop new technology or medicines.

It is also important for practitioners to ask patients if they have any questions. They may not realize that some patients will remain quiet until the practitioner asks. In addition, practitioners should use simple language with their patients. In my experience, practitioners use many scientific terms, which most patients don't understand and get more confused and anxious, especially over their test or treatment results. Practitioners should understand that their patients come from different backgrounds and not all can understand medical jargon. By using simple, layman terms and explanations, the message can be communicated clearly to patients. This will help to avoid misunderstandings and definitely improve patients’ trust for their practitioners.

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The Patient’s Role in Communication

It is not only practitioners who have the responsibility to improve communication. Patients have an equal role to play to improve communication. Prior to their health visit, patients should spend some time preparing themselves by writing down their concerns, questions and opinions that they want to discuss with their practitioners. This will help them not forget what important matters to ask or inform their provider about, or to simply not take up too much of the practitioners’ time.

The patient-practitioner communication is a core element for good medical practice. I believe that stronger patient-practitioner communication can lead to good patient healthcare and a better understanding of the present health problem(s) for both sides.

To achieve this, both patients and practitioners need to work together.

An Unspoken Truth: The Reality of Failing Medications

Fear, hesitation, anxiety, curiosity, and mourning are a fraction of the emotions we experience during the diagnostic process. On a personal level, it was easy for me to compartmentalize these emotions as I was only focused on finding a medication therapy that would help mitigate my debilitating symptoms. After my official diagnosis, my GI doctor immediately started me on my first treatment regimen. It felt so liberating finally having a concrete treatment plan that addressed my medical issues, but I was cautiously optimistic about the benefits of this new therapy.  

My very first medication therapy was Mesalamine tablets. This is a very common beginning medication, but of course I never knew that since this was such a novel experience. My doctor reassured me that this specific medication is usually well tolerated, which was why it was my first treatment option. I put every ounce of faith I had into this medication. Daydreaming about a symptom-free life and the liberation that would ensue was a regular occurrence for me. This was all quickly halted, as I soon had to deal with the reality of failing my first medication treatment.

Daydreaming about a symptom-free life and the liberation that would ensue was a regular occurrence for me.

Failing medications was never an option that crossed my mind. I was always aware that medication wasn’t a one-size-fits-all, but how could that happen to me? My dazed sense of optimism paired with a lack of information from my doctor were the root cause. Why was I never informed that failing medications was a common experience among people with IBD? Why was I never given proper mental health resources when dealing with the aftermath of failing a medication? Why wasn’t I prepared? These are all questions that plagued my mind in the aftermath of the failed treatment.

I felt like I had been dealt an unlucky hand. Not only did I have to navigate the world of chronic illness completely alone, but I now had to deal with the process of finding new drug therapies.

I felt like I had been dealt an unlucky hand. Not only did I have to navigate the world of chronic illness completely alone, but I now had to deal with the process of finding new drug therapies. After having a rare reaction to the first treatment, my doctor immediately put me on a immunosuppressive self-injection. My entire life changed after that. Was I now supposed to be afraid of simple illnesses? How susceptible was I? What will happen to me during COVID? Luckily my GI doctor was open and helpful, but the process wasn’t any less traumatic. After starting this home injection, my condition quickly started to improve. After so much turmoil and strife, I finally was able to see light and experience the warmth and security of a “healthy” body. The quality of my life started to improve, and I quickly found my new normal. I was so elated that “at home self-injection” basically became my new middle name. But unfortunately, this did not last too long.

After seeing so much promise, I developed antibodies to my medication. My doctor explained that this meant my medicine was no longer effective, and that I once again failed a drug therapy. I vividly remember the aftermath of that phone call. I was inundated with emotions that I can't even begin to explain or recall. Now, was I supposed to restart this emotionally draining and arduous process all over again?

After voicing my concerns to my doctor, she emphasized that there was a glimmer of hope. Since I responded well to the second injection treatment, I could be put on a biosimilar medication via an infusion. She hoped that this new anti-TNF treatment would continue to improve the quality of my life and symptom mitigation. Getting infusions was going to be a new hurdle, regularly spending hours in an infusion clinic, especially at my age, was going to take some adjustment. The process was terrifying, but I was privileged enough to have an attentive medical team, which included my infusion nurse. After almost two years, I am still on my infusion therapy and have achieved remission. It was a long journey, and I am still dealing with processing everything, but I will be eternally grateful for having newfound security in my health.

Ultimately, I want to stress the importance of transparency. Had my doctor informed me from the beginning that failing medications is a common experience, I don’t believe that I would've had such a difficult transition. I can’t help but to think, “Why aren't doctors more forward about this unspoken reality?”. If I could go back to my newly diagnosed self, I would tell him to prepare for a turbulent ride and to make sure that his anxieties are heard, understood, and validated. It is the responsibility of our medical team to inform us about the different medication processes we will inevitably go through. I believe this transparency will not only breed a more informed patient population, but a less anxious newly diagnosed patient population.

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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.

Guest Speaker: Dr. Tiffany Taft on Medical Trauma

This article is by Savannah Snyder from Canada.

Photo by Karolina Grabowska from Pexels.

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Medical trauma is an experience many of us are all too familiar with, whether that be from your diagnosis story, undergoing certain procedures, or just through the experience one faces while dealing with a chronic illness that is as unpredictable and serious as IBD.

CCYAN fellows spent a Saturday morning with the talented Dr. Tiffany Taft talking all things medical trauma. Dr. Taft is a licensed clinical psychologist with specialized training in chronic medical illnesses. She is an associate professor studying the social and emotional impacts of digestive disease and has been a part of the division of gastroenterology and hepatology. Along with this impressive resume, Dr. Taft is a fellow IBD warrior and has Crohn’s Disease.

Dr. Taft’s lecture on medical trauma was an eye-opening experience explaining the medical field of mental health and digestive diseases. To give some background in the field, psychologists first began looking at digestive diseases in 1995, with the first real controlled study focusing on cognitive therapy and self-help support groups in the treatment of irritable bowel syndrome. In 2020, the Rome Foundation GastroPsych was developed. The Rome Foundation is an independent not for profit organization that provides support for activities designed to create scientific data and educational information to assist in the diagnosis and treatment of Disorders of Gut Brain Interactions. The overall mission is to improve the lives of people with functional GI Disorders. Unfortunately, there are not a lot of professionals in mental health interested in this area. Within chronic illness, the main focus is on obesity, cancer, and other areas.

Post-Traumatic Stress Disorder

Post-traumatic stress disorder is a psychiatric disorder that may occur in people who have experienced or witnessed a traumatic event such as a natural disaster, a serious accident, terrorist attack, war/combat, or assault or who have been threatened with death, sexual violence, or serious injury. Subcategories of symptoms for PTSD include trauma, intrusion, such as nightmares or flashbacks, avoidance, negative alternations in cognitions and moods, and marked alterations in arousal and reactivity including feeling on edge and a high heart rate. However, within this definition, there is no mention of chronic illness. Due to this, within the mental health field, post trauma stress caused by chronic illness is referred to post-trauma stress rather than post-traumatic stress disorder.

Inflammatory Bowel Disease – Post Traumatic Stress

There are currently four studies in IBD research surrounding mental health. In 2 survey studies, the first study found 40% of people with IBD have symptoms of PTSD. Comparing this to the rate at which war veterans have PTSD is at 10-20%, the study was redone to ensure there was no bias. In the second study, 797 patients in IBD partners database with the Crohn’s and Colitis Foundation were surveyed and similar statistics were found. The study revealed that 25% of participants experienced PTSD symptoms, a rate higher than we would ever want to see. The highest symptoms felt were nightmares, flashbacks, re-living trauma, feeling keyed up and on edge, and avoiding situations.

Furthermore, it was shown that women are more likely to experience negative symptoms than men are. Also, it is shown that non-white and Hispanic individuals are more likely to experience negative symptoms. Additionally, those with a college education are more likely to experience more symptoms, which can be a marker of socio-economic status in the US. Overall, it is very evident that patients in privileged groups tend to have less post-traumatic stress symptoms.

Dr. Taft reviewed a regression model with staggering results showing that there may be a connection between the post-traumatic stress symptoms such as re-experiencing, increased arousal, avoidance, and full IBD-related post-traumatic stress and hospitalizations and surgery.

Brain Gut Connection

Dr. Taft discusses the possibility that post-traumatic stress in IBD could affect disease, but more research will need to be completed. An interesting question posed is whether people with IBD are more susceptible to post traumatic stress because of their gut microbiome make up. It was shown that war veterans with PTSD had similar qualities in their microbiome as those with IBD. Overall, Dr. Taft was concerned that their microbiome could have changed because of the theory of the stress response and effects of extreme stress happening in PTSD on the immune function. A potential future study in this field surrounds treating people with IBD that have post-traumatic stress and see if their microbiome changes with treatment. This study would provide amazing resources to the IBD community and be an addition to the path of new treatment options.

Treatments & Medications

As of 2021, there are no treatment options for IBD-PTS that have been tested, but it is known how to treat PTSD. The following therapies are very effective for PTSD: cognitive processing therapy (CPT), prolonged exposure therapy (PET), written exposure therapy (WET), eye movement desensitization and reprocessing (EMDR), and trauma focused cognitive behavioural therapy (TF-CBT). Medications used for PTSD are anti-depressants. There are no specific PTSD medications available, and the best outcome with medication is when it is combined with therapy.

Grounding Techniques

Dr. Taft ended off this informative zoom with grounding techniques. Grounding is an amazing way to work through active distress from PTSD. When you engage all 5 senses, you bring your brain back to the present and stop re-experiencing that traumatic event. Although this will not cure your PTS, it is a vital skill that can help although it will take some time and practice to be effective. Some great ideas include listening to music, tossing a ball in the air, holding a piece, eating something sour, or smelling an essential oil.

5-4-3-2-1 Trick:

5: Acknowledge FIVE things you see around you

4: Acknowledge FOUR things you can touch

3: Acknowledge THREE things you hear

2: Acknowledge TWO things you can smell

1: Acknowledge ONE thing you can taste

Overall, this was a very informative session where us fellows learned about the reality of medical trauma in IBD patients and the crucial need for further research in this field. If you want to hear more about Dr. Taft, check out her twitter @DrTiffTaft.

Stelara by Injection: My At-Home Biologics Treatment

Last time I wrote about my biologics treatment for Crohn’s disease, I had gotten my very first infusion of Stelara at Mount Sinai’s IBD Clinic in New York City. A few weeks ago, I was able to administer my own Stelara injection, right from the comfort of my own dormitory in college! As an undergraduate, it was of the utmost importance that I could stay on top of my schoolwork without having to commute for medical treatment in the middle of the semester. 

Honestly, this was my first time doing an injection that wasn’t prepackaged, such as the Humira pen. Instead, I had to poke the needle into my own skin -- a hard ask for someone who isn’t a huge fan of needles. Nonetheless, I was grateful to have a Mount Sinai nurse call me via a telehealth appointment to walk me through the whole ordeal. 

This is what the injection looks like! It’s not too large -- it actually fit right in my mini-fridge from the dormitory. Be sure to dispose of any needles and treatments properly if you’re doing injections on your own.

Notably, it was a hassle to arrange the delivery of my treatment with the various insurance companies. Although I’m fortunate enough to have student insurance through my university, it’s still very difficult (and opaque) to organize Stelara deliveries for IBD patients. This points to larger structural flaws in the healthcare system that often prevent patients from receiving affordable care that they absolutely need, but alas: this is a conversation for another time. 

I chose to administer my injection into my stomach! Other patients opt to have their injections in their thighs or upper legs. I found this to be the comfiest option for me! 

Admittedly, there was a bit of blood after I pushed the needle into my skin. However, I was able to clean this up, and my nurse said that it was not something to be concerned about! One tip I have for any IBD patients on Stelara is to prepare all your materials ahead of time -- that way, you won’t be walking around looking for band-aids or antiseptic wipes during your injection! Another benefit of doing the at-home Stelara injection was that I didn’t feel as groggy or as tired, as I did from the first infusion that I had received. 

All in all, although I definitely was not thrilled about having to inject myself with my biologics medication, this experience reminded me that having such access to healthcare to begin with is such a blessing. I hope that IBD patients feel less lonely in their struggles to adjust to new treatments -- know that you’re not alone and that we’re all in this together! I wish you the best of luck on your treatments; sending you all my love from New Jersey!

Managing Major Life Events with IBD

TW: upsetting emotions, house fire, PTSD, mental health

Every person on earth has to go through the rollercoaster called life, facing major ups and downs during the course of their time here. Having a chronic, debilitating illness does not save you from facing other major life-altering events. Managing these events and getting up every day is a life skill that one builds over time.

In Spring of 2020, as the COVID-19 pandemic ravaged the world, I sat locked up safely in my apartment in New Delhi thinking of what to eat as my refrigerator was devoid of any vegetables or fruits. Delhi was under lockdown, and the few times we were allowed to go out to shop, I would have to go when it wasn’t too crowded (due to being on immunomodulators and with no sign of vaccines), and reach the grocery stores to find all unprocessed stocks of produce gone. I weighed my remaining options and it came down to cooking up hot meals of oatmeal or khichdi. I didn’t want hot meals since the Indian summer heat was well on its way, and all the air conditioners in the home were nonfunctional. 

Because of the pandemic and subsequent lockdowns and curfews Delhi was facing, all services (like the local electrician service) stopped. After many days of desperation in the heat though, I just couldn’t take it anymore. I finally arranged for the electrician to check the air conditioners out. 10 minutes before he was due, I thought of prepping for him to see they were not working. I put one of the air conditioner’s plug into the socket, took the remote and turned it on. A strange and loud whirring noise took me by surprise, and I stared to see what would happen next. About 5 seconds later, I saw smoke rising out form the top, initially thinking it was the vapor from the heat in the room. Another few seconds later, there was a bright yellow light and, lo and behold, a fire had started. My reaction should have been to freak out but I was just SO fatigued and thought “I can’t deal with this right now.” I half-thought about going back to the living room to finish a meal I had just finished cooking for myself and letting the fire be, but reality caught on and I started to freak out when I remembered I lived in an apartment so the fire was going to spread to other homes. 

My reaction should have been to freak out but I was just SO fatigued and thought “I can’t deal with this right now.”

My first instinct was to tell my parents but they were posted in a remote country where most of the popular calling channels were blocked. I tried calling my mother through an app that hanged and would not cooperate. With the call still ringing, I reached for the main door to warn the neighbors but ran back inside to save valuable papers first in the room with the fire. I entered the room to see the thick smoke spreading faster than I could recall what to collect and where it was. Before leaving, I took a deep breath and removed the plug from the socket, turned it off, opened the windows of the room and heaved a sigh of relief the damn air conditioner hadn’t fallen on top of my head. I quickly accepted I needed to leave my valuables, meal and home behind, and ran out to tell the neighbors who called the firefighters. With the pandemic in full swing, the firefighters took a while to arrive and as they opened the main door, a thick cloud of black smoke engulfed us. None of us could see ½ meter ahead of us. The brave men took some time, but eventually extinguished the fire. I was very fortunate to not lose too many valuables, but the entire apartment was left in sticky black soot, with little soot particles falling like rain everywhere around me. It felt impossible to clean up. It was impossible to live there. 

After the fire, the next challenge was to find a place to live. Find a place to live, during a pandemic, with a suppressed immune system – easy. I didn’t have any immediate family in the state, and strict curfew rules made it nearly impossible to travel outside the state. The first few nights after the fire, my amazingly kind neighbors took me in but those nights were rough. For several nights I heard the whirring sound and jumped up to save myself from my inaction. After this event, my extraintestinal symptoms like brain fog and fatigue worsened drastically. Eventually, my cousins from the adjoining state arranged for me to come live with them, taking some time for official permissions.

Before leaving, I felt a responsibility to rescue the apartment and stuff my parents had painstakingly collected over the years from their international postings. With no available cleaning services in sight, I was soon wrapped up in what seemed like an infinite loop of wiping one product after another, only to redo the entire process again as soot resettled on it. The walls looked like they’d had a new black paint job, and soot cobwebs danced at every corner. Yet clean I did, through a physical and mental haze, and managed to wrap everything except the furniture up. I remember having to wash my hands after every new item I touched because the sticky soot made it impossible to clean. By the end of the 3-day rigorous clean up, my hands were very dry and semi-permanently stained black. It took me multiple weeks to rid myself of the stains when I moved to my cousin’s home.  

My mental health deteriorated significantly over the summer. As a result, my extraintestinal symptoms worsened. I was sleeping for most of the hours of the day, and spent the rest in bed. I was so fortunate to have empathetic family members that took care of me and didn’t judge me for my invisible struggles. But I felt I’d had enough and needed a breather. Literally. Multiple times a day, I would feel like my chest was tightening up, my nose felt blocked throughout the day and I lived in a cloudy haze. As services slowly opened up, a mature me didn’t want to dismiss my new symptoms and I immediately booked an appointment with my GI, who recommended some blood tests and we found that everything came back normal. In fact, those blood tests were probably the best I’d had in a long time. But my situation was not getting better, only worse. Ultimately, I managed to get on a one-way flight to my parent’s posting passing through 2 continents and 3 flights, while all international airports were minimally functional. I slept for 14 hours straight after I landed. 

At every step of the pandemic, whether it was arranging a steady stock of medication or food through hoarding culture, fighting a house fire and acting responsibly through the haze, cleaning up (on a one-man team) what resembled a coal mine, or taking my symptoms seriously and arranging to get my illness checked, all with a suppressed immune system, makes me appreciate how far I have come at managing life events.

When I reflect back at this time, I feel incredibly proud of myself and tremendously thankful to my empathetic neighbor and family members. At every step of the pandemic, whether it was arranging a steady stock of medication or food through hoarding culture, fighting a house fire and acting responsibly through the haze, cleaning up (on a one-man team) what resembled a coal mine, or taking my symptoms seriously and arranging to get my illness checked, all with a suppressed immune system, makes me appreciate how far I have come at managing life events. Most importantly, I am proud of the way I got up every single day and faced every new impossible step, keeping my hope alive. My hope was well protected by my kind neighbor who graciously took me in, fed me, and talked me through my experience, and my loving family who did impossible things just to keep me safe and support me through the cloudy aftermath. I’ve learnt that managing major life-altering events like these are possible with individual grit, determination and an understanding support system who stop you from succumbing into a negative spiral. With IBD, a major life skill is prioritizing things you can control in events you can’t. In these trying times, I did my best to keep to my safe foods, take all my medications on time, limit other stressors, and stay on top of my illness by getting it checked and keeping my GI in the loop. In terms of PTSD, I am still very nervous around air conditioners. At this moment, I can’t afford a therapist and so do my best to educate myself on PTSD and healthy relaxing coping mechanisms. 

Being Present: How to Live Well in Times of Sickness

For IBD patients, it can feel as though we are constantly running on a hamster wheel of chronic illness. The symptoms may go away, but they often come back. The fatigue may falter, but soon, your battery is depleted. In the past, I’ve written extensively about self-care and patience with treatments, but I wanted to share about ways that I’ve learned to be well in times of sickness. 

Lately, I’ve been delving further into disability literature and critical theory, attempting to find some sort of theoretical basis for the suffering we undergo as IBD patients. In particular, I have found a great deal of solace in Susan Sontag’s ‘Illness as Metaphor,’ penned in 1978. In this seminal piece, Sontag writes, “everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.” 

To be in good health is fleeting, even when it is taken for granted. Being diagnosed with Crohn’s in the middle of my undergraduate experience has taught me this much. The grueling sensation of grappling with a disability, however, comes with a paired urgency that we must appreciate the good moments as they come. Being an IBD patient has made me more present-minded, aiming to be content with the present rather than being so focused on the uncertainties ahead. 

Taking walks is one way that I incorporate wellness into my daily routine: so important to take breaks and remember what’s truly important! 

Learning to prioritize wellness is no easy feat; it certainly requires a growth mindset. As with anything in life, a learning curve is difficult to adapt to, but prioritizing one’s well-being could not be important. While I’ve written about the importance of accommodations in the post-COVID era, it’s crucial to extend such compassion to ourselves! 

In the same piece, Sontag finishes by noting, “how reluctant we are to admit that there is only one kingdom and some of us simply have yet to travel its rockier terrains. It is inevitable. We will all need care. We will all long for accommodation. Until then, we can choose to what extent we want to indulge the fantasy that wellness is a condition we have somehow earned, instead of an ephemeral luck that is guaranteed to run out.” 

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My challenge for our readers is to pause, take a deep breath, and recount what you are feeling at this very moment. In recognizing that we do live in two kingdoms, one of health and one of sickness, we ought to grant ourselves a chance to be present, wherever our lives may take us in the next breath.

A Disease Quartet

This article is by Vasiliki-Rafaela Vakouftsi from Greece.

Photo by cottonbro from Pexels.

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

My name is Vaso.

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

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

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

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

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

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

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

Adrenal insufficiency is a daily challenge in its management.

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

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

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

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

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

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

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

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

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

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

Homemade Indian Condiments with Lessened Ultra-Processed Ingredients

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

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

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

TAMARIND CHUTNEY (yields 1 cup)

 Ingredients:

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

• 100g dried seedless tamarind OR or tamarind paste

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

• 30g jaggery OR Molasses (3 tbsp)

• 1 cup water

• salt to taste

Steps:

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

2. Pass through a sieve into a medium bowl.

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

4. Add salt, as per taste.

COCONUT CHUTNEY (yields 1 cup)

Ingredients:

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

• 1 fresh coconut

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

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

• 1 green chili

• salt to taste

Optional tadka

• Coconut Oil (1 TSP)

• Mustard Seeds (¼ TSP)

• 1 twig curry leaves

Steps:

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

2. Add the rest of the ingredients and blend.

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

4. Top off coconut chutney with tadka.

GREEN CHUTNEY (yields 1 cup)

Ingredients:

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

• 150g fresh cilantro

• ½ lime

• 1 red onion (small)

• 3-4 cloves garlic

• 1-inch piece ginger

• 1 green chili

• salt to taste

Steps:

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

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

3. Top with lime and salt to taste.

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

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

Long Term Reminders Of an Ostomy After Reversal

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

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

Scars

My current ostomy scar. Results may vary.

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

Foods

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

Dreams

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

Takeaways

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

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

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

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

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

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Here are some of my favorite quotes from the book: 

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

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

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

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

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

This article is sponsored by Connecting to Cure.

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

Healing Looks Different for Everyone

This article is by Nathalie Garcia from the United States.

Photo by Spencer Selover from Pexels.

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

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

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

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

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

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

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

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

Healing…

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

This article is sponsored by Lyfebulb.

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

Experiencing Change with IBD

This article is by Savannah Snyder from Canada.

Photo by Nothing Ahead from Pexels.

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

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

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

Self-Care Tips

Sleep 8+ hours

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

Nourishing Foods

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

Friends and Family

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

Journaling

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

Activities

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

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

Negative Body Image

This article was written by Saravanan Nagappan from Malaysia.

Photo by Ismael Sanchez from Pexels.

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Choose to do nice things for yourself.

Care about yourself and your happiness.

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

Surround yourself with happy things.

Believe in yourself.

Start to build your confidence.

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

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

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

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

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

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

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

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

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

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

Overcoming Fear

“I must not fear.

Fear is the mind-killer.

Fear is the little-death that brings total obliteration.

I will face my fear.

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

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

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

Frank Herbert, Dune

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

Sometimes fear comes from the unknown surrounding our medications

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

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

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

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

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

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

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

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

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

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

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

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