My Leadership Journey With IBD: Discovering the Leader Within Me

By: Dr. Fasika Teferra

I had always loved giving back to my community. Volunteering and community service are what I had done ever since high school, and I loved making someone smile by even the smallest action. However, I had always seen myself as the benefactor and the people I served as the beneficiaries. Even though I loved seeing my impact made, we had very little in common, and the relationship never got past friendship. Although I loved the work I did, it was not something that kept me up at night or dedicated long hours. Working on improving the quality of life for IBD patients in Ethiopia however, was a totally different journey. Besides dedicating more than three years continuously, I am constantly thinking of new ideas and ways to do things differently.

During my final years of medical school, I hardly had any time for my own medical checkup let alone organize an in-person event. So, I decided that until I finish medical school, I would support one or two patients via phone.

I have never thought of myself as an innovator or problem solver. I don’t think people are born leaders, but I also have never understood how leaders were actually made. I remember the exact moment when I knew I had to step up and create an IBD space for people to get support but no idea how I would do it. I was 24 at the time, 4th year in medical school, and barely any networking experience. So, I tried to reach out to some gastroenterologists to tell them I wanted to do something to help other IBD patients. At the time, I myself did not know exactly what I wanted to do until one doctor articulated the word support group. With the realization that my ideas have one collective name, I turned to Google to see how other people lead support groups. I saw a lot of in-person meetings as part of activities which was discouraging to me. During my final years of medical school, I hardly had any time for my own medical checkup let alone organize an in-person event. So, I decided that until I finish medical school, I would support one or two patients via phone, and I notified my interest to a gastroenterologist in one of the biggest teaching hospitals in Ethiopia.

Fast forward to November 2019 when I attended a conference titled Women Leaders in Global Health. The conference came to my attention as I was googling people and projects related to what I wanted to do. It was also so convenient as it happened in Kigali, Rwanda where there were many Ethiopians living there that I had known. With the reasonable plane ticket price and securing a free place to stay, I somehow managed to get the weekend off and traveled for the conference. I remember feeling at home during the conference. There were so many experienced women in the global health field with so many accomplishments, and even though there was a gigantic gap in age and knowledge between me and most of the attendees, I felt like I belonged. I had never been exposed to such a variety of experts, and I soaked it all in. By the end of the conference, I had a clear vision of what I wanted to do.

I was confident enough in my vision, and with the diverse board of directors, I pulled in all the technical knowledge I would need to succeed.

I went back home, and in just over a month’s time, Crohn’s & Colitis Ethiopia Charitable Organization was established as a local nonprofit in Ethiopia with a vision of finding a cure for Inflammatory Bowel Diseases and a mission to improve the quality of life for patients living with IBD in Ethiopia through awareness creation, community support and much more. I had no background in Civic Society Organization leadership or anything in that lane, but I was confident enough in my vision, and with the diverse board of directors, I pulled in all the technical knowledge I would need to succeed. I am part of the community I serve now, and I intend to make my own health as well as others as optimal as I can. Whether it is in the nonprofit sector or the for-profit realm, I have learned that as long as the passion comes from the heart, anyone can make a difference in their surroundings. I have learned that there are smart ways to acquire all the years of knowledge I would need to lead properly, and that I don’t have to learn everything and know everything before I can take action. If you have an idea you think your community can benefit from, don’t doubt yourself and start with a small step. Rarely do great things happen overnight, but with consistency and persistence, anything is possible.

Traveling With an Ostomy Bag

By: Carina Diaz

As the world is opening up a little bit more, I was able to travel a couple times in 2021. Having an ostomy made it an entirely different experience. If you also have an ostomy and haven’t traveled with it yet, here is my experience and some tips. 

Almost every time I’ve been through TSA since my ileostomy surgery, I’ve had to be patted down by someone. I asked an agent if there was some kind of medical pass or something so that I wouldn’t have to keep going through this, and she told me my only option was to get TSA pre-check. Getting patted down doesn’t take too much time, but it’s definitely something to keep in mind while traveling as it can add time at the airport. I wish there was a more accessible option since TSA pre-check costs money. 

Hiking El Yunque rainforest in Puerto Rico and a mirror selfie after emptying my bag at a restaurant.

As a kid, I was definitely a window seat type of person, but now as an adult with a medical condition, I much prefer the aisle. This way I don’t have to ask anyone to get up if I have to go to the bathroom during a flight, and it eases my anxiety. If I bring a carry-on suitcase, I can also easily access it in the overhead bin if I need anything. 

I change my ostomy bag every two to three days, so I make sure to pack my supplies accordingly. I also bring at least two extra ostomy bags in case of leaks or if I accidentally cut a hole through my bag. You can get travel size products from whichever company you order your ostomy supplies through. Adhesive remover spray and lubricating deodorant are two of my essentials. The adhesive spray helps to take off the bag easily and gently from the skin. The lubricating deodorant is a liquid you put in your bag so that output doesn’t cause a blockage or pancake at the top. 

Traveling with friends to NYC for a concert.

I usually always bring a small bag or backpack with me on the plane. This is where I’ll keep a small pouch of my ostomy supplies to use in case I have a leak while traveling. So far, it has only happened a couple times, but I was very glad to be prepared.

The supplies I bring are:

• Scissors to cut the hole for my bag

• My Hollister two piece bag system

• A trash bag to put the old bag in

• Adhesive remover spray

• Skin prep

• Cream for my eczema that I have on the skin near the bag

• Stoma powder

• Barrier strips

• Tape

• A small mirror. If I can’t access a family bathroom, the mirror comes in handy when changing in a bathroom stall. 

Besides keeping a pouch with supplies with you on hand, you can also talk to a flight attendant about having an ostomy and feeling anxious about flying with one. I have anxiety and letting someone know how I’m feeling helps me to calm down. This way if I end up needing help, they’ll know of my situation. I usually have snacks with me as well, but I also ask for an extra bag of pretzels since that can help output come out more formed and less liquidy. 

Being prepared is something that really eases my mind. After traveling the first time with an ostomy, you’ll have a better idea of what to expect. I hope that reading about my experience and how I prepare can bring peace of mind to anyone out there who is feeling unsure about traveling with an ostomy. 

It's not all about the bass - feeling comfortable in your skin.

By: Maalvika Bhuvansunder

Ahh, the ever classic “All about that bass”, the so-called “revolutionary” song which was meant to show body positivity. One question though: How is it body positivity if you are putting down other body types? Body shaming is something I have endured constantly. Growing up, I was an extremely plump and chubby kid. Every vacation used to be a nightmare with relatives constantly telling me to eat less and become slim. To a preteen! That's where the root of my low self-esteem began. I was told by people that I wouldn't have friends if I don’t reduce weight. So growing up, when I did not understand the lyrics, it's all about that bass… by Meghan Trainor was a revolutionary song for me. It made me, and I’m sure a lot of other girls like me, feel amazing about our bodies. But what about the others?!

I was told by people that I wouldn't have friends if I don’t reduce weight.

A few months before I got my diagnosis, I started losing a lot of weight. Each month I would have lost around 2-3 kgs. Very soon, the chubby girl became the skinny one. It was very confusing for me and my parents as to why I was losing all this weight. Post the diagnosis, at least we knew the reason. It was very new and weird for me to look this thin and I knew this was not a healthy weight loss, but I did not have any control over it. Keeping down food got difficult, and I developed this fear of eating as it was associated with pain. What added to this were the comments of other people.

There was one group that cheered this weight loss, glorifying it without knowing the pain I was in. Then, there were the others that made me feel ashamed of being so skinny. The constant, why don't you eat, are you trying to diet, you looking this skinny is UGLY got too much. I refused to step out of my house because of this constant judgement. Random strangers used to advise me on how to gain weight and that being this skinny is not good. Strangers did not know the cause of my weight loss, but when the family and friends that did know about it made such comments, it hurt the most. The constant comparison with others in my family to casually making “jokes” and trying to funny about my weight was horrible for me. It was impossible for me to gain any weight, and it was not like I did not know that I was dangerously underweight. But “Eat up!” was not the solution, and food was the main pain-causing component for me at that time.

If you are healthy and feel great, then who cares what shape and size your body is? People are going to comment either way.

Post-surgery, now that I am able to slowly gain weight, this fear is always still there of what if I go back to my preteen body type. On the other side, the fear of relapse in weight gain is also there. I’m sure a lot of individuals with IBD would experience body dysphoria, the feeling of not belonging in your skin, and hating the way you looked in the mirror. That was me for most of my life. This experience made me realize that what truly matters is feeling healthy. If you are healthy and feel great, then who cares what shape and size your body is? People are going to comment either way. What truly matters is your health. To this date, I am not fully comfortable in my skin, but I am making baby-step progress towards it.

Dealing with Anxiety from Medical Tests and Procedures with IBD

By Varada Srivastava from India

Featured photo by Pixabay

I have been in remission for the past 2 years, but even in remission I am required to regularly get blood and stool tests done. Recently one of my tests showed I had inflammation and I realized even after years, I experience the same type of anxiety about it. I've broken it down into 3 stages:

My Three Stages of Anxiety

1. Anxiety of getting the test and/or procedure done

Tests and/or procedures, like an MRI or colonoscopy, are infamous for having a really difficult prep. I personally get very worried whenever the doctor recommends I should get a colonoscopy or MRI enterography done. The prep for both these tests produces immense amounts of anxiety for me. The procedure in itself is very painful as well. Unfortunately, for people with IBD these tests are a must to see the inflammation of the digestive tract.

2. Anxiety about the results

Getting anxious about the results is very common whether you're in remission or dealing with a flare. Being scared about the worst case scenario, thinking about how much work or school you’ll be missing if the test results are bad, wondering whether the medication has stopped working are all fears that may come up. I think this is the most common and debilitating type of anxiety to feel. Working through it seems difficult especially without the support of friends and family.

3. Anxiety about life after the results

Hopefully the results we get are positive and that's the end of the anxiety cycle, at least till next time. Unfortunately if the result is bad, all the questions we ask ourselves while spiraling become very real issues that need to be addressed. Figuring out medical insurance issues, getting leave from work or school, finding ways to get out of social events are all obstacles that we need to overcome. The main question that arises is how to deal with this cycle and is there any way to break it? I have not yet discovered a way in which I do not engage in this cycle but I have found little ways to manage it better.

How I have learned to manage anxiety better

1. Talk to your family and friends

This is the most obvious but also the most effective way to exit an anxiety spiral. Find someone you trust and confide in them. Tell them about your fears, no matter how ridiculous or unrealistic they sound.

2. Support group or therapy

If you find it difficult to talk to your family about this or are concerned about worrying them. Try to find a support group or a therapist. One of the benefits of joining a support group will always be that you’ll be surrounded by people who regularly go through something similar. There are many wonderful support groups that can be found online as well!

3. Focus on self care

Make yourself a priority. Eat good food and drink plenty of water, meditate as often as possible, journal, go out for a walk, play with your pet, facetime your friends, watch your favorite tv series. Try to engage in activities that you enjoy as much as possible.

Find what works best for you!

Press Release: Roundtable on Young Adults with IBD and the IBD Medical Student Scholar Program

The Crohn’s and Colitis Young Adults Network (CCYAN), is an international online fellowship program and community space for young adults with inflammatory bowel disease (IBD). Today, the CCYAN officially launches its Roundtable on Young Adults with IBD alongside its IBD Medical Student Scholar program. Both initiatives are made possible with funding provided by the Helmsley Charitable Trust, the largest private funder of research into Crohn’s disease, a form of IBD. 

Adolescents and young adults with IBD are a growing demographic worldwide. With over 25% of IBD patients diagnosed before age 16, there is an urgent need to holistically address the unique challenges these patients face as they transition into adulthood. The Roundtable on Young Adults with IBD is a yearlong learning community comprised of monthly discussions between patients and providers and seeks to improve outcomes for the young adult IBD-patient population.

“This programming comes at a time when IBD is impacting younger populations at a growing rate. While young adults make up a significant portion of IBD patients, they have been routinely left out of discussions within the medical space,” said Sneha Dave, founder of CCYAN. “We are proud to use our lived experience to bring unique stakeholders together to better outcomes for young adults with IBD.” 

Each monthly discussion will focus on an issue that is specifically pressing among the young adult IBD demographic — including medical trauma and behavioral health, disordered eating, comorbidities of IBD, peer support interventions, and intersecting identities. Each will be led by one young adult IBD patient and a clinician or scientist with experience in IBD. Written proceedings with key takeaways will be posted after each meeting on the CCYAN website, and a report will be published at the end of the year to summarize critical information from the proceedings. 

"The Helmsley Charitable Trust’s Crohn’s Disease Program’s mission is to improve the lives of people living with Crohn’s disease. Young people with IBD face unique and urgent challenges, and the CCYAN’s Roundtable and Medical Student Scholar program are critical to building community and helping medical providers understand and address these challenges” said Terry Felton, Program Officer from the Helmsley Charitable Trust.

In tandem with this Roundtable, the CCYAN is also initiating its IBD Medical Student Scholar Program, a novel program for medical students interested in the field of gastroenterology to learn about the global challenges and needs of adolescents and young adults with IBD by participating in the Roundtable. The active participation of medical students is paramount in disseminating the unique needs of young adults with IBD throughout the medical community. These Student Scholars will be empowered as future medical professionals to understand and engage with young IBD patients throughout their careers. 

To learn more about the Roundtable on Young Adults with IBD please visit www.ccyanetwork.org/roundtable or if you would like to become an IBD Medical Student Scholar, you can access the application at www.ccyanetwork.org/medical-student-scholars.

About the Crohn’s and Colitis Young Adults Network

The Crohn’s and Colitis Young Adults Network facilitates (CCYAN) a fellowship program and community space for young adults with Inflammatory Bowel Diseases around the world. The CCYAN is led entirely by young adults with IBD and is a program through Generation Patient.

About The Helmsley Charitable Trust

The Leona M. and Harry B. Helmsley Charitable Trust aspires to improve lives by supporting exceptional efforts in the United States and around the world in health and select place-based initiatives. Since beginning active grantmaking in 2008, Helmsley has committed more than $3.6 billion for a wide range of charitable purposes. Helmsley’s Crohn’s Disease Program supports impactful ideas and mobilizes a global community committed to improving the lives of Crohn’s disease patients while pursuing a cure. For more information, visit helmsleytrust.org.

Obtaining Higher Levels of Degrees as an IBD Patient

By: Isabela Hernandez

Many people go on to get their master’s, go to law school, medical school, or any form of higher degree past an undergraduate education. I am currently in the midst of applying to medical school. Recently, I have been filled with an anxiety about the future of when I do start this career path. This anxiety is not centered around whether I am capable of handling the pressures of medical school, but rather, if my ulcerative colitis is.

My goal is to go to medical school; it always has been. I know that I can handle it and have the potential to succeed. But, what scares me, is if my body can handle the lifestyle of a medical student. I have often heard from current medical students that it is a constant study, class, study, exam, and repeat lifestyle, leaving little time for self-care. It is so difficult when mentally you know you can do something, but you never know what you can expect from your IBD. It is so frustrating sometimes when you're in this battle of uncertainty with your disease, truly feeling like the future is uncontrollable. I am writing this not to give any sort of advice, only to express how I feel about a path I have chosen for myself and if anyone else can relate to my concerns.

Since it is completely different from undergrad, I am not completely sure if the tactics I acquired there will even apply in medical school. I know that I will need to find ways to mitigate my stress and my disease at school, in order to achieve balance and reduce flares. But this is always easier said than done. I am still a while away from actually getting into school and starting, but I want to address this fear by recognizing that “you don’t know until you know.” This is a phrase my sister always says to me when I start overthinking about the future and scenarios that might negatively affect my progress. One never knows how things are going to turn out until they actually happen, and for the most part, the anxiety leading up to an event is always worse than the actual moment that it happens. I hope by writing this, I encourage not only myself, but others to pursue any career choice they know deep down they would succeed in. Don’t let your IBD scare you away from a bright future, like mine has been trying to. Rather, focus on the facts that you know now, address them, and work your way into the future. The future is always unknown, so we might as well try for the best future we can.

This article is sponsored by Trellus

Trellus envisions a world where every person with a chronic condition has hope and thrives. Their mission is to elevate the quality and delivery of expert-driven personalized care for people with chronic conditions by fostering resilience, cultivating learning, and connecting all partners in care.

A Breakdown of All the Medications, Treatments, and Supplements I’ve Tried

By: Carina Diaz

I’ve tried a mix of conventional and holistic medicines over the years to try to find what works for my Crohn’s disease. Chronic and autoimmune illnesses can often feel like a never-ending journey of trial and error. Sometimes, a diet or medication can work for a short period of time, and then you have to pivot to something new. Below is a list of some of the medications and methods I’ve tried to treat my IBD.

A quick disclaimer: The purpose of my writing about what I’ve tried is simply to share my experience. I am in no way suggesting that there are right and wrong ways of treating IBD. Different things work for different people. 

Biologics: 

• Humira: This is probably the most common medication for IBD. I had talked to my gastroenterologist about going on Entyvio, but my health insurance forced me to go on Humira first. If I “failed” it, then I could try the biologic that I wanted. Humira is a shot that you or a nurse can do in either the thighs or belly. The first round is four shots, and the device looks like a pen, so you don’t see the needle. A nurse helped me with this, and it stung like hell. The pain didn’t last long, but it was very intense. I felt very itchy all over my body for the next few days and in very random places like between my toes and ears. I was able to then move on to Entyvio since I had a reaction. I have heard from nurses that there is now a version of Humira that is “sting-free.”

• Entyvio: This biologic is an infusion that was about one hour long. I didn’t get any side effects from it, but after trying it for a year and not seeing any change, I had to have another conversation with my gastro about what to try next. Fatigue was one of my biggest symptoms while I was on this, and it made me feel a little more tired after the infusion. 

• Stelara: It’s a shot that’s in a typical syringe, but unlike Humira, it didn’t sting. I was never brave enough to do it myself, so I would go to the doctor’s office for a nurse to do it. It was quick and painless (for the most part). I didn’t feel tired after. In my opinion, seeing the needle makes it harder to be able to administer it yourself. 

• Remicade/Inflectra: This is my current medication. I was put on Remicade in 2019. It’s a pretty popular biologic and has been around longer than Entyvio and Stelara. This is an infusion that takes about two and a half hours, but it depends on your weight. I had to switch to Inflectra in 2021, which is a biosimilar to Remicade, because of insurance. I also had to go through a lot of blood tests to figure out if the dosage was enough to make a difference. I used to have an infusion once every three months and now it’s once a month.

Pills:

• Prednisone: I have been put on this WAY too many times to count. It’s a hospital’s go-to medication every time I’ve been admitted. For me, it was like going through puberty again. I was moody and it altered my body, especially my face. When I was on a high dose, all I could think about was burgers, specifically the ones from Freddie’s. I’ve heard that it’s common to have side effects once you’re weaning off of it, but I didn’t experience that. The only positive part of being on prednisone for me was that it gave me an appetite, and I was able to gain some much-needed weight back. It’s a short-term solution ,and I honestly hope to never be on it again.

• Budesonide: I was put on this steroid for a few months after Entyvio. This had no effect on me, so I wasn’t on it for very long.

Diets:

• Specific carbohydrate diet: This is a grain-free diet that has low sugar and lactose and was created specifically for IBD. From what I remember, there are two phases, and after you complete the first one, you’re already supposed to see a difference in the number of bowel movements in a day. I’ve tried this twice and it wasn’t helpful at all. 

• Rainbow diet: It was all about eating more fruits and vegetables. I was at my sickest around this time and my body couldn’t withstand much fiber without causing pain, so I only tried it for a few weeks. 

• Gluten, dairy, and soy-free: This one probably affected me the most negatively. I love pasta and cheese with my whole heart, and it was very difficult to cut those out. Vegan cheese has a particular smell that made it very difficult for me to want to eat it. Having to be this restrictive with food was not only time-consuming and expensive, but also boring and frustrating. All I could think about while I was on this diet was all the food I wasn’t allowed to eat. 

Holistic practices:

• Colon hydrotherapy: I had this treatment done in college, and my only symptom at the time was bloating, but it was very severe. I would look several months pregnant. Colon hydrotherapy involves using water to flush out the large intestine. A tube was inserted into my butt so that water could flow through, and a medical professional would massage my stomach at the same time. I would have to go to the bathroom immediately after. I remember feeling much better, but I don’t think it helped with inflammation. 

• Vitamin C IV drip: This had no effect on me whatsoever. 

• Supplements: I’ve tried so many kinds from probiotics to powders, and I haven’t experienced any changes from them. I was taking these while I was really sick and going to the bathroom up to 20 times a day, so I wasn’t really absorbing anything I was ingesting. The only ones that I currently take that are suggested by my medical team are vitamin D and liquid iron. I’ve gotten very bad reactions from iron infusions.

This is not an exhaustive list, but it’s the majority of what I’ve tried. I will say that I’ve gotten to a point where I’m very cautious about holistic medicine. It has further complicated my relationship with food and my body. The practices also have less research than conventional medicine and aren’t regulated by the FDA. 

I really try to focus on listening to my body, which has taken years to learn. To be honest, food doesn’t really seem to help or hurt me. I’ve learned that my symptoms work in cycles and that stress management is important. Stress seems to be the biggest factor when it comes to going in and out of flares. 

When I was really sick, I was willing to try anything and everything under the sun to treat my IBD. I thought that remission not only meant that I would be symptom-free, but also free of medication, which is actually very rare. I’ve even gotten treatment in Colombia and Puerto Rico. While I’ve definitely been through trying to find what works for me, I am very fortunate to even have the option to try all of these things. Whether your IBD is mild or severe, I hope that you are gentle with yourself along the way. 

Moon Face Throughout Childhood – How It’s Affected My Body Image

By: Isabela Hernandez

Going on prednisone is a somewhat universal experience for IBD patients. Maybe not everyone, but a lot of us have cycled through steroids and experienced the “fun” symptoms it brings along with it. One of them being moon face. Moon face is when your face appears very swollen and round. For me, I’ve cycled through high dose prednisone many times, especially in my childhood and have a very familiar relationship with moon face.  

This was the first year I experienced having moon face. I was 5 at the time; I remember this time in my life vividly, especially this picture. It was a school picture day, and I knew we would be taking a lot of photos. I still didn’t fully understand what was going on with my body and even thought having IBD constituted as normal, as it was the only life I’d ever known. But what I did know was that I didn’t look like how I once did, that person that my classmates knew me as.

To compare, this was me the year before. I knew the girl in this second picture. That was me. But I didn’t recognize the girl in the first picture and would look in the mirror as a 5-year-old girl, confused on who was staring back. At the time, I didn’t realize how this would affect me later growing up. My relationship with my body and how I viewed myself every morning when I looked in the mirror was slowly tainted.

This was my second time having moon face. I was 8. I was a little older and much more self-aware about how others viewed my appearance. I became shy, closed off, and scared that my cheeks would scare my friends or cause them to not even recognize me. I remember thinking I didn’t even care about feeling sick inside or having to go to the hospital; the only thing I ever wanted was to look like myself and look normal.

This was my third time having intense moon face in childhood. I was 10 here. This was the worst for me. I was growing into my body, but the body I was growing into felt foreign. This was the age that my thoughts began to center about how I looked and how others viewed my appearance. I felt like the person I was inside and the person I saw in the mirror were two different people, constantly disconnected. I grew into teen hood and young adulthood with the same thoughts always seeping in. The constant weight fluctuations as a child constantly made me second guess how I felt about myself. No matter what weight I was at, when I looked in the mirror, the little girl with chubby cheeks was always the one staring back. This body dysmorphia never let me feel content with my body. I was in a continuous fight with myself, and I was always losing. Over time, and as I matured more, I tried to combat this. It became routine for me to constantly remind myself that the struggles with my body were caused by something out of my control. It wasn’t my fault, and I can’t punish myself every day for something I didn’t do. What I can control is how I speak to myself when I look at my body. My relationship with my body isn’t perfect and I don’t think it ever will be. I now just view those photos as different versions of myself, versions that were strong and resilient to the pain that IBD can cause. I need to constantly remind myself that my body isn’t my worst enemy and to control my thoughts when I begin to believe that it is. It’s easy to hate on our bodies and hate what IBD has done to them, believe me, I do it all the time. But I must remember that even though my body is not perfect, it’s the vessel that keeps me alive, doing the best it can, and that’s ok with me.

This article is sponsored by Trellus

Trellus envisions a world where every person with a chronic condition has hope and thrives. Their mission is to elevate the quality and delivery of expert-driven personalized care for people with chronic conditions by fostering resilience, cultivating learning, and connecting all partners in care.

Working Full Time with IBD

By: Carina Diaz

All I remember wanting when I was really sick was to have my own apartment and a full time job like my friends. I’ve been working a 9 to 5 job for almost three years now and have fully experienced the pros and cons. What I didn’t realize until I started was that managing my IBD is a job within itself. Balancing the two can be very exhausting.

The accessibility that remote work provides has really changed the game.

Deciding to disclose that you have IBD to your employer is a difficult and personal choice. I have been very lucky that at my current and previous jobs, I’ve felt comfortable talking about my illness. Not only that, but COVID-19 has made the world embrace remote work, and as someone who deals with fatigue regularly, this has helped me a ton. I don’t have the energy to get up every day, make breakfast, shower, and commute to work. The accessibility that remote work provides has really changed the game.

It can be tricky in an interview to gauge work culture, but I’ve found that it’s very important to ask as many questions as possible on it. Below is a list of some examples:

1. How would you describe the work environment?

2. What is your management style?

3. Which company value do you more relate to and why?

4. What are the qualities of the top performing employees?

5. What does work/life balance look like at your company?

These questions can help give a clearer picture on what the company is expecting from their employees. Do they micromanage? Or do they just care that you get the job done? Do they work more than 40 hours a week? Are the top performers workaholics? What are the benefits and perks of working there? The answers will reveal a lot.

It can be tricky in an interview to gauge work culture, but I’ve found that it’s very important to ask as many questions as possible on it.

Another perk of my current role is having unlimited PTO. If I feel like I need a day off to rest, I’m able to do so. It’s not just a nice vacation perk. Organizations like Chronically Capable are great resources to find jobs that have flexibility. It helps to start your job search with a list of “must have” qualities that you’re not willing to compromise on. Tiktok has also been a really good resource on building a resume, interview tips, and how to plan a job search.

A “must have” on my list is being open about having IBD in the interview process to gauge how it’ll be received. I mention having monthly doctor appointments, but that this wouldn’t get in the way of finishing tasks. Most companies I’ve interviewed with have said that’s no problem, and I’ve been very lucky in that regard, but not every organization will be that way. 

There are laws in place to prohibit discrimination, but unfortunately not every employer is willing to be flexible and offer appropriate accommodations. I feel very lucky to have positive experiences when joining the work force so there are good employers out there! For me, being open about my illness is a way of advocating for myself and ensuring that my needs are met.

Dealing with Moon Face

Dealing with Moon Face

Written by Natasha Kacharia from the United States

Featured photo by Erin Profaci from Pexels.

I never thought about myself as a superficial person. But if someone asked me about the worst part of living with ulcerative colitis, it would not be the hemorrhaging of blood, the vomit, the diarrhea, the stomach cramps, the sleepless nights, loss of muscle, or the joint pain.

It would be moonface. It would be the fat deposited on my cheeks and neck making my face appear round like the moon.

Whenever I enter a flare, my doctor prescribes me oral steroids called prednisone. Desperate for relief, I always agree and consume the prednisone without protest. A couple of the many unfortunate side effects of prednisone is weight gain and moonface. Thus, whenever I start on prednisone, I also make an effort to watch what I eat to help minimize the side effects. But it never works. And, everytime, in addition to having my clothes not fitting, my face abnormally expands, making my cheeks puffy and my pointy chin a double chin. I get moonface.

I learned to handle weight gain. I wear my classic XL Stanford Christmas sweatshirt in the winter and my oversized CS t-shirts in the summer. No, I never liked how my body looked on prednisone, but I could hide it. But how do I handle moonface? I cannot exactly cover up my face, even with a mask.

And, what my friends and family fail to understand is that it is one thing to hate your body - everyone hates their body to some extent - but to hate your face is an entirely different beast.

There is no escaping your face. Your face is what you stare at when you brush your teeth or you enter a zoom meeting. It is the first part of you that a person looks at when they meet you. Your face makes your first impression.

And moonface is not the first impression I want to make. I tell people that I used to be a nationally ranked roller skater, and they don't seem to believe me. I tell people about my past romances, and they don’t seem to believe me. To them, I look like a slightly overweight girl who fell victim to freshman fifteen, even the people who know about my ulcerative colitis do not entirely believe that my face is simply a side effect of a medication. It is not their fault. I have a hard time believing myself too. Flare me and remission me always feel like an entirely different person. A different entity.

Because the girl with moonface spends an hour long zoom meeting distracted by how puffy her cheeks are, she wears a mask everywhere - partially because she is high risk but mostly to cover up her face. She misses random guys flirting with her. She misses believing someone when they call her pretty. She misses how the world treats her because let’s face it; the world is easier to the pretty and skinny.

So, no, I never really thought about myself as superficial, but it is easier to dig deeper than the skin when you like the surface.

My Leadership Journey With IBD: Just Getting Started

By: Dr. Fasika Teferra

I realized I needed to bring about change, as I was also affected by it. I couldn’t standby anymore and dared to be different, a trailblazer.

The day I decided to take the big step and start something that was unknown set me up for all the things I would do in the next few years. In school and at home, I was always taught to follow a certain person or structure. That was the definition of success for most people I know, including myself. There was no room for creativity, no room for exploration. We don’t choose our universities or our majors unless we pay to go to a private college. It was the same in healthcare. Although I was equipped with the knowledge to comprehend what my doctor was saying to me, I didn’t ask any questions. I was focused on fitting in the structure that was put before me instead of doing something different. I remember the day I found out there were other Ethiopians living with IBD. I was so happy to know I was not alone, but at the same time felt more alone. I wondered why there was no one talking about this condition, educating the community, and debunking myths. As I looked deeper into the lack of community, I started to see the gaps in the system. There was no community program to teach more about the condition, and medications seemed to be scarce. I saw that lack of knowledge is not just among the general population, but also among doctors and policymakers. I realized I needed to bring about change, as I was also affected by it. I couldn’t standby anymore and dared to be different, a trailblazer.

Like I said, I was never a risk-taker. After my diagnosis, I lived in fear for the first few years. Looking back, I can almost say I was not living at all. The season where I started to think about what I can do to solve problems is where my personal growth began. I never learned it in school, and I had no one to look up to at the time. As time went by, I realized I started to see potential opportunities where others might see unsolvable problems. When I am faced with a problem, I know I could protest, take it to the media, demand change, or I could lead by example and show how it can be done differently.

My leadership journey began a year before I founded the nonprofit Crohn’s & Colitis Ethiopia. My motto had always been to think big, start small, and act now. I used the limited resources I had to create something amazing. I had been so appreciative of the limited resources available because it helped me become innovative and fixed on finding solutions. I will be sharing what my big ideas are, how small I started, and what actions I took to help me advance my mission. I am doing this in the hopes of helping someone else reading this wondering if they can dare to not just think, but start something as bold as I did.

Traveling with your IBD Medications

What to know About Traveling with your IBD Medications

By Varada Srivastava from India

Featured photo by Oleksandr Pidvalnyi from Pexels.

Recently I travelled with my biologics for the first time internationally. The process of preparing for it, going through immigration, security, and ensuring the medication temperature was maintained was a long and confusing procedure. Through this article, I hope to help anyone planning to travel in the near future.

Since most countries started opening their borders recently after COVID-19 one of the main concerns of anyone with IBD is travelling with medication. Especially since many laws have been changed. I travelled from India to Japan at the beginning of July 2022 and this was my experience.

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1. Research the medical laws of the country you’re visiting.

Japan has strict laws when it comes to opioids. My pain medication contains Tramadol so I asked my doctor to mention the exact amount of pills I’d be carrying there. This is an image of my prescription which mentions the manufacturer, dosage, the number of injections I’m carrying and it also mentions that it is a self-injection. In some countries, it is important to mention that Humira/biosimilars of Humira are supposed to be self-injected.

2. Prepare prescription documents before the flight.

It's essential to make sure all documentation regarding your disease and medications is available. The more detailed it is, the easier security checks will be.

3. Talk to the Airlines.

Most airlines allow injections to be carried on board. However, it is best to inform them beforehand. Also, let them know whether you’ll need to use the injection on the flight. My flight was booked with ANA airlines and they were very understanding about the situation.

4. Storage conditions.

Humira and other biosimilars need a maintained temperature of 2-8 degrees celsius. Make sure to carry them in an ice box or vaccine carrier. Most airlines don't keep these medications in their refrigerator due to hygiene reasons but you can ask the flight attendants for ice while on the plane.

5. Security checks.

Many people travel with injections whether it's biologics or insulin. Therefore the security is well versed in this. Check whether your medication can pass through X-ray scanners beforehand and keep the prescription handy.

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It's overwhelming and scary to travel when you have IBD, hopefully following these steps might make your next travel a little bit easier.

Embracing the term "Disability"

Written by Natasha Kacharia from the United States

Featured photo by Tara Winstead from Pexels.

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Last year, I was applying for an internship. I do not remember what internship but that is not the point. This internship, like most, had a voluntary self-identification of disability section that goes on to list what a disability may include: blindness, deafness, cancer, etc. However, this list was different because it included gastrointestinal disorders.

I know. I know. The lists of disabilities are usually prefaced with the phrase: disabilities may include but are not limited too. Yet, the fact that this internship specifically bulleted my condition put an unexplainable smile on my face.

You see, the voluntary self-identification of disability section always stressed me out. I never knew what box to check: yes, no, or I do not wish to disclose.

Screensot from the Voluntary Self-Identification of Disability form

The fortunate or unfortunate reality of living with a chronic illness is that people do not see the constant stomach cramps, the hemorrhaging of blood, the fatigue, the insomnia, the arthritis, or the nausea, and they definitely do not see the psychological effects of the disease. No, when people look at me, they see a healthy, possibly a little unfit, college student.

Thus, when the disability section inevitably comes on the application, I always wonder what box to check: yes, no, or I do not wish to disclose.

The same questions always run through my head: Does my condition qualify as a disability? Am I disabled?

Do you understand my indecisiveness now? When people think disability, I am not the person they imagine.

However, with a singular phrase – gastrointestinal disorders – the internship made me feel seen. Finally, I was free from my indecisiveness and the weights of my secret. For a singular moment, my invisible illness did not feel so invisible anymore.

Yet, I still had trouble identifying as disabled. Was I only disabled when I was in a flare, or can I always check the disability box? Do employers only ask for disability disclosure to engage in affirmative action for individuals with disabilities? If so, then do I have the right to check the disabled box, as having an invisible illness, I have not been actively discriminated on due to it. Meeting other people within the chronic illness community simply made me more confused; some readily embraced the term disability, while others sheered away from the term chronically ill. I met people whose illnesses were far more severe than mine and did not self-identify the term disabled, so what gave me the right? Was I being overdramatic? The fact that the people surrounded me did not recognize my struggles did not give me the space to embrace my own struggles.

But I am done. I am done with self-doubt. I may have an invisible illness, but I am done being invisible. I am ready to dance in the open, so for my next application, I am going to check yes. Yes, I have a disability.

Imposter Syndrome Being Healthy

By: Isabela Hernandez

I was diagnosed with IBD when I was three, specifically with ulcerative colitis. When I look back at my life, there is not a time where I do not remember constantly living and dealing with my chronic illness. When I think about my childhood, the first thing I think of is being sick. Living with illness means we deal with an extra set of emotions and priorities that a lot of the world does not have to. Medicines, appointments, refills, procedures, and pain immediately flood my brain the minute I wake up in the morning. It is something we all deal with and try to integrate as best we can into our daily life.

Medicines, appointments, refills, procedures, and pain immediately flood my brain the minute I wake up in the morning.

As I grew up, in a strange and twisted way, I started to feel comfort being sick. Hospitals felt like home. Walking into doctor’s office felt more normal to me than walking into school. Over time, I felt this intense solace within being sick and for some reason, started to feel uncomfortable being healthy. Being sick was MY normal, so what was being healthy? Around the time I was 11 or 12, I was put on an experimental treatment that allowed me to stay in “remission” until I was 19. I put remission in quotes because it does not mean the disease is done and over. We still deal with medications, appointment, mild procedures, and mild symptoms. In these seven years where my disease had toned down, every day I woke up with this feeling that being somewhat healthy was wrong. I knew how to be sick. I was good at it. But, I had no idea how to deal with anything being in remission. I had a serious case of imposter syndrome these years and felt this extreme anxiety that in any moment, I was going to go back into my comfort zone of flaring, something I had endured for so long that it felt normal.

It is not fair that we spend so much more time in sickness than in health, that now sickness is our normal.

Not a lot of people mention that although flaring IS the worst part of having IBD, being in remission doesn’t mean life is instantly easy. It comes with a whole new set of fears and anxieties about how to go back to “normal” life. What is normal life for us when in remission? It is very confusing and something I still try to figure out on the daily. It is not fair that we spend so much more time in sickness than in health, that now sickness is our normal. It is our life. But what I have come to realize is that my sickness is NOT who I am. It has definitely shaped many parts of my personality and how I have become who I am now, but it is not the biggest and most defining part of who I am. I used to think that my IBD was who I am and that is it. It is definitely not, and we are just the people that our sickness has shaped us to be. I know that every day is a struggle, in remission or in a flare. I recognize that and actively try to remind myself that even though I feel comfort being sick, it is NOT normal. It just makes us all stronger.

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 This article is sponsored by Trellus

Trellus envisions a world where every person with a chronic condition has hope and thrives. Their mission is to elevate the quality and delivery of expert-driven personalized care for people with chronic conditions by fostering resilience, cultivating learning, and connecting all partners in care.

Digestive Disease Week 2022 and the Need for More Patient Voices

By Mara Shapiro from the U.S.

I had the privilege of attending Digestive Disease Week 2022 in person in San Diego at the end of May. I attended the conference as a member of the press for MD / alert (my employer). In addition to attending live sessions, writing articles, and interviewing doctors to create content as a medical journalist for my physician-oriented publication, I was also attending the conference through the lens of an IBD patient advocate.

This was my first time attending a medical conference, and it was a truly eye-opening experience not only professionally but personally. Getting to witness the excitement and gravitas of a major scientific gathering of top gastroenterologists from around the world was thrilling. Meeting fellow CCYAN patient advocates and CCYAN supporters was uplifting and rewarding. It is challenging to find enough adjectives for “excitement” as I describe all the highlights. I was very much like a “kid in a candy store” getting to be a part of the DDW experience.

However, I would be amiss to not mention the imbalance I felt as an IBD patient at a conference focusing so heavily on IBD research and scientific innovation. I, an IBD patient and the subject of most of these sessions and presented research, felt like my experiences were not being accurately represented. I felt lost in a slog of late breaking data and clinical trial endpoints. Where were the patient voices? How come patient narratives were not being presented? Why, in a sea of thousands of IBDologists (as they call themselves on #GITwitter), did I feel so alone?

I have to believe that there is a way to merge scientific discovery and research with patient advocacy, combine the clinician voice with the patient voice, and reach a collaborative understanding of what it means to live with IBD. So often in medicine, the patient’s experience gets forgotten or overshadowed by clinical research and treatment algorithms. Therefore, when patients do get a chance to share their story, it is often given a secondary stage or lesser attention.

What could happen if patient stories were used to aid in the contextualization of all medical research presented at these conferences?

I think we could create a discourse that is not just productive to clinicians and scientists, but that resonates with patients, the very focus and backbone of all this research. We can improve this disconnect. Patients should be able to recognize themselves in the research being presented about their disease.

Advice for clinicians and patients

For clinicians:

• Please continue to support patient advocacy efforts such as CCYAN.

• Continue to listen to and support your patients and their lived experiences of chronic illness.

• Consider implementing more patient-reported outcomes and qualitative measures into your research.

• Engage and network with patient advocates at conferences.

For fellow patients:

• Continue sharing your story.

• Remember that there is room for you at these conferences, and don’t be afraid to find your voice in these settings.

Postpartum Anxiety & IBD

By: Dr. Fasika Teferra

Did you know that women with IBD are at a higher risk of developing new-onset mental health disorders in the perinatal period? [1] Not every pregnancy, birth, and postpartum experience is all happy and bright. One of the most neglected topics that should take the spotlight during pregnancy follow-up is postpartum depression and anxiety.

There is a whole spectrum of mental illness and mental health, and that holds true for postpartum depression and anxiety. I do not attribute my late recognition of postpartum anxiety to a lack of knowledge because I am a medical doctor, but rather, it is due to ignorance. I didn’t think that having some of the symptoms I had was that big of a deal. I was told as a first-time mom, I would worry about everything, but I didn’t stop and think to what extent that was normal. Thankfully, I had a very subtle experience and found some things I could do to catch myself when I am worrying too much. Meditation and breathing techniques had been quite successful.

Although I was able to finally recognize it, it was already months after my delivery. As a first time mom, I read through all the blogs I could find and all the youtube videos I could discover. They taught me about how to pack my hospital bags, what kinds of cloths to wear and things to bring for your baby to list a few. But there were none that I came across that prepared me for what would happen after we leave the hospital and start our lives with our newest family member. It never even crossed my mind to watch out for something like this or even discuss it with my husband. It just isn’t being talked about enough yet.

There are so many mothers who struggled with this behind closed doors and some who have passed away because of this. I want to do my part by raising awareness to this critical issue of motherhood. There is still more that needs to be done. It is not shameful to be experiencing it, and it is certainly okay to ask for help!

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1.     Vigod SN, Kurdyak P, Brown HK, Nguyen GC, Targownik L, Seow C, Benchimol EI. A5 FIRST-ONSET PSYCHIATRIC DISORDERS IN PREGNANT AND POST-PARTUM WOMEN WITH INFLAMMATORY BOWEL DISEASE IN ONTARIO, CANADA: A POPULATION-BASED STUDY. Journal of the Canadian Association of Gastroenterology. 2018 Feb;1(suppl_2):7-8.

My Journey as an International Student

By: Maalvika Bhuvansunder

Living on your own in a new and beautiful country sounds like one of the best things that could happen. For individuals with a lifelong debilitating illness like IBD, it can be extremely scary to live alone. The independence could come at a cost as there is a lot that could go wrong, but there is also so much that can go right!

My journey began with a lot of uncertainty, all these questions: Should I even be doing this? Would I survive without my parents there? What do I do if I have a flare? How would I manage cooking when in flare, and so many more. I had never even slept over at a friend's place since the diagnosis, as my home was my haven, let alone move to a completely different country! This was when my parents stepped in and explained to me, this was my dream to go to the UK and to pursue it no matter what. To make things easier, my dad travelled with me to the UK and helped me settle in. 

One of my biggest fears going in was, how would I make friends with this condition, would I even have the energy to make new friends? I decided to keep my fears aside and to be candid about my condition. It was not worth it for me to make friends who would not understand my situation, and I’d rather not have such friends. Being candid truly paid off in the best way possible! The friends I made there were understanding of my condition and acknowledged that with this condition, there are certain limits. They always found a Crohn's friendly alternative for us to do and never made me feel inferior. I remember having one of the worst flares I had experienced there and being worried about how was I going to tackle this. Let me tell you all that it was the moment after the flare that gave me the confidence that I GOT THIS! I survived a flare alone for the first time, and although it seems weird that something like this made me so happy, that’s what I was: happy. My friends who were in the UK constantly checked up on me and so did my new ones. It gave a sense of relief that although, to a large extent, I have to deal with this alone, I had people who I could turn to at such times.

Just when I thought I got this and I can handle everything, the biggest crisis we all faced hit, the PANDEMIC. I had plans to go back home, but the flights were suspended. I was in shortage of medicines and every supermarket was in shortage of food. I genuinely did not know how I was going to survive this. Calling home and crying about it my mom gave me the best advice, either I can cry at this situation or see how to manage the crisis. I contacted all the nearest clinics and found to my relief that the one closest to me was open. The first thing I did was meet the doctor and stock up on the meds. As for the food, well, Mom to the rescue. Within a day, she couriered all necessary items and made sure I had enough stock to last me for months. Another thing that helped me get through this was my friend. She was studying in another city in the UK, and we decided the best thing to do was to be together during this time. Together, we made sure to make the best of the situation and be each other's support at that time. She was a lifesaver! I do not think I could have survived the pandemic on my own.

IBD had taken a lot away from me, but I am glad I took this step despite all the fear and apprehension. Living in a new country turned out to be the best decision of my life. I got to pursue what I had always wanted to and learned a lot about myself. This experience was needed for me to have the confidence that I can manage things on my own.

There are a few simple steps one can take to make sure our journey in a new country goes smoothly. In collaboration with one of the fellows, we are coming up with a handbook containing useful information for anyone deciding to move to a different place for their studies. Hopefully, you all have the same amazing experience I did!

Friendship and IBD: Know when to not give advice

By Varada Srivastava from India

Photo by Helena Lopes from Pexels.

Hanging out with friends, attending parties, going to school are all things kids with Crohn's disease lose out on. You’re hospitalized or too sick to get out of bed many times, especially during the beginning stages of diagnosis. Not to mention the mental health issues that come with dealing with a chronic illness from a young age - anxiety, depression, PTSD associated with hospitalization are all too common. It can be very difficult to maintain friendships when you’re trying to survive daily life. How people react to your chronic illness is one of the pivotal points of friendship. I couldn't help but notice a pattern between the friendships I’ve maintained over the years. The common factor between them has been my friends’ ability to listen and not give unsolicited advice when I am talking about my disease. This is a quality I personally look for, however I have heard from many of my other friends who have a chronic illness that this is something they appreciate as well.

As someone who has been living with this illness for more than 6 years now, I have received my fair share of undesired advice from family, friends and random strangers. It is something that really aggravates me. Getting advice when you're trying to rant is pretty annoying in general but when you add IBD - something that is a very personal and a sensitive topic - the reaction you get can be explosive. Living with a chronic illness is tricky, most of us have figured out what works for us whether it's medicine or food after a long and painful journey. And as young adults, most of that journey is still left. One of the main reasons why some of us have such a negative reaction towards this is because it comes across as insensitive and like a privileged view on something very complicated.

This however, doesn’t mean that you don't look out for your friends with IBD. One of the foundations of a good friendship is caring for and helping out your friends. If you are a loved one of someone who suffers from a chronic illness, ironically, this is the advice I would give you:

1

Ask your friend whether this is something they are comfortable talking about. Never push them to talk about their diagnosis, medicines or journey.

2

Don't take it personally if this is something they would like to keep private. Many of us have gone through very difficult diagnosis journeys and talking about them can bring back a lot of trauma.

3

Research about the condition. Try to understand where your friend is coming from and what they struggle with on a daily basis.

4

Try not to give unsolicited advice, but do intervene if you notice them doing something that may not be in their best interest.

Having a good support system is extremely important for someone with a chronic illness. Friends give us a safe space to express and explore our emotions. Friends are, in reality, the best emotional medicine for people like us to overcome sadness and motivate us to take a leap of faith to transform our lives for the better.

To Anyone Who’s Been Called a “Difficult Patient”

By: Carina Diaz

My experience with getting a diagnosis and how it still affects me today.

This summer will be my ten year anniversary of having Crohn’s Disease, and throughout the years, I’ve been told the same phrase over and over again by many doctors: “You’re a difficult patient.” 

Hearing this since the age of 18 has been hard on my mental health. I’ve internalized those words and blamed myself for the state of my body. I thought that my symptoms being out of control was because I ate something that I should’ve have (I can’t resist pasta or cheese), I was thinking too negatively, or maybe it was just karma for something I did wrong. But none of that is true.

This is for anyone who has also been told that they’re a hard case, a real head scratcher if you will, as my ostomy nurse tells me. I’m going to tell you the words I wish someone would’ve told me: It’s not your fault. You did nothing to deserve this. You aren’t being punished (although it can definitely feels that way at times). 

I used to always look for a reason for why I was going through this. Maybe by having an explanation, I would feel better about my situation. I wanted something to blame. I wanted to be able to direct my anger towards something more tangible. I was craving to have some level of peace or stability. Getting diagnosed felt like my world was ending.

I was having abnormal symptoms for just a few months. I had to go to the bathroom frequently and having a bowel movement was very painful. I would try to avoid food as much as possible, because food meant having to poop and pooping meant pain. When my mom confronted me about skipping dinner and learned about what I was going through, she took me to my primary care doctor, which led to getting a referral for a gastroenterologist. I thought I would be told what was wrong with me, given medicine to treat it, and that everything would fine once again. That had always been my experience with doctors. I had always gotten answers and something to help. I didn’t know that there were things that doctors couldn’t fix or at the very least, have answers for. Getting a diagnosis meant I could no longer ignore how my body was feeling.

I didn’t know what was realistic for me to want out of life anymore. Would I be able to travel, have kids, or even live on my own? My doctor didn’t seem to take my age into account when he told me the results of my colonoscopy and endoscopy. I was finishing high school and getting ready to begin college. I was overwhelmed with the possibility of not being able to keep up with my peers, of not being normal. 

Hearing this since the age of 18 has been hard on my mental health. I’ve internalized those words and blamed myself for the state of my body.

The language that doctors use, whether or not it’s intentional, often puts the blame on the patient. “I don’t know what to do with you.” “You’ve failed this medication.” “I’m referring you to someone else. I can’t help you.” This has been so harmful to my mental health. It made me think I had done this to myself. At the end of every day, my mind would race through all the possible factors: I wasn’t managing my stress levels, I ate something that I shouldn’t have, I didn’t check the ingredients in what I ate thoroughly enough, I wasn’t taking the right supplements, or I needed to try another diet. For years, I picked apart my thoughts and actions. I dealt with a lot of toxic positivity from family. As well meaning as it may have been, it just fed into blaming myself. 

If you can relate to my experience or have been through it yourself, I hope you’ve been able to find comfort and support in community. It’s what organizations like CCYAN are here for. You’re not alone, you’re not to blame, and there are people out there who understand what you’re going through. I hope that knowing you aren’t alone brings you a bit of comfort. 

A Post-Colonoscopy Reflection

By Mara Shapiro from the United States

Featured photo by Scott Webb from Pexels.

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Colonoscopies and endoscopies or “scopes” as I like to refer to them, quickly become a part of our lives as inflammatory bowel disease (IBD) patients. Everyone and their doctors’ are different, but most of us will get scoped every year or two for the rest of our lives. For pediatric and young adult patients with IBD, that can be a daunting realization. Even though they aren’t a major surgical procedure, the prep is torture, and it is still a day or two we need to spend away from school or work at the hospital and then recovering. It’s a lot. Scopes can become a huge source of stress and anxiety, they certainly are for me.

I just got my yearly scopes and it was definitely an experience I won’t forget. Between chugging Suprep at 4 am, wearing a diaper for the drive to the hospital, and then going into an adrenal crisis at home following anesthesia, this was an experience for the books. Like with other recent parts of my chronic illness journey, I’ve been trying to be more mindful of all these difficult experiences and what I can learn about myself and about life as a result. Here are some of my reflections from my latest scopes and from where my Crohn’s disease is at in general. I hope these reflections can spark some new insights for you as well.

I am stronger than I think.

For me, chronic illness is a constant reminder that I can do hard things. I can do hard things that previously terrified me. Not only can I do these hard things, but I can excel and come out the other end a stronger and more confident person. I try to go into big appointments, procedures (big or small), and flare-ups with the mindset that I am stronger than I think and know that I have what it takes to make it through. This is how I try to be positive and optimistic. I’m not perfect! I oftentimes struggle with negative self-talk and we are all entitled to feel bad for ourselves on occasion, but the difference is knowing deep down that YOU CAN DO THIS and returning to a similar positive mantra especially when things are tough. I went into these scopes with the mantra that “I am stronger than I think” and “I can do hard things” and I survived and I’m proud of myself for getting through them with such a positive mindset.

It’s all about the mindset.

Over the past year, I have really focused a lot of my energy on my mindset and the narratives I am telling myself about what’s going on around me. I have found that being in control of my mindset, and how I feel and view what’s happening, has allowed me to create a much healthier relationship with my chronic illness(es). For example, I went into these procedures with the mindset that: This is going to be hard, I’m going to hate it, but I can do it because I can do hard things. I need to do this for my present and future health. This mindset that I am suffering for a few days for information that will help my doctors and I better control my IBD was very humbling for me and gave me that extra motivation to chug that last gulp of Suprep.

I know my body best.

In addition to having Crohn’s I also have Addison’s disease, a form of adrenal insufficiency where my adrenal glands don’t produce any cortisol (our body's natural stress hormone needed for most of our bodily function). Since January 2022 I have been on a cortisol pump which allows me to get a 24/7 continuous subcutaneously infusion of cortisol in a way that closely mimics the circadian rhythm pattern of a healthy person’s cortisol cycle. This treatment has been life-saving and given me my life back in remarkable ways that are hard to express. Having surgery or anytime my body is under intense periods of physical stress can be dangerous because my body does not naturally increase cortisol production in response to stress the same way a healthy person does. I need to manually try to guess how much extra cortisol I need and also increase my dose for a few days or longer. This was my first time going under anesthesia since having Addison’s disease. Long story short, the anesthesia team did not follow the protocol my endocrinologist wrote out and I ended up going into an adrenal crisis within an hour or two of returning home after the procedure. I am very thankful for my intuition and my dad’s help - we were able to quickly increase my cortisol pump rate and within a few hours, I stabilized. Thankful is the only way to describe how I feel, as this situation could have easily ended differently. Especially after this incident, I always know that I know my body best.

Remission is not a cure.

Thankful is also how I feel that my scopes showed no signs of active disease. Stelara is continuing to work wonders for my Crohn’s disease. However, even though I am in “endoscopic remission”, I am still not symptom-free and there’s a common misconception that being in remission means you’re cured and good as new. I hope in time I will become one of those patients who forget they have IBD, but for now, even though my ileal ulcers have begun to heal, I still have just as many bad days as good ones.

I have Crohn’s but it doesn’t have me.

This one is a bit cheesy but throughout the course of these procedures, I realized that I am in control of my disease. By in control, I mean that I have the power to decide how much my disease impacts my life regardless of how much power and control it tries to take from me. Even on the days when I’m in a lot of pain and not sure how I’ll be able to get more than a few feet from the bathroom, I am still in control of how I let that affect me. My disease is not my entire identity nor my self-worth, it is just a part of me. I have Crohn’s and it’s a huge part of who I am and how I interact with the world, but it is not my entire world. There’s a lot of strength to be found in being able to reclaim some of the power and control that this disease has previously had over me.