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.

My Journey with Exercise and IBD

By: Isabela Hernandez

Exercise can be a sensitive topic for people with IBD. For me, diagnosed with ulcerative colitis early on in my childhood, I never consistently played a sport growing up due to flares and frequent hospital visits. Little did I know that this inexperience would shape my relationship for years to come. People subconsciously implement exercise as a basic part of their everyday life throughout childhood. Because of this, as adults, they’ve developed a sense of comfortability with the idea of exercise. But for those with IBD, Saturday soccer games or just a run around the block is not a top priority. Getting into remission is always the goal and once it happens, the need to exercise is one of the many things that follows. This often leads to frustration on what to do and how to feel comfortable in the gym or at home trying to better your physical health. I never realized how dysfunctional my relationship with exercise was until I got to college.

College was the first time I began to exercise consistently without quitting. I was not forced to deal with severe sickness or constant hospitalizations, which led me to explore my ability to exercise. Gradually, I was able to learn exactly what I enjoyed doing to get my heart rate up. The journey of finding a relationship with exercise is an individual process. It is different for everyone and takes time. Personally, my life changed when I discovered strength training.

I’m sure many with IBD can understand what it is like to feel the relentlessness of feeling physically weak. I never once felt strong, and especially while flaring, the physical weakness I sometimes experienced was debilitating. I was hesitant at first to enter the gym, since I had no idea what I was doing. I was numb at the thought of embarrassing myself trying to exercise. This is a common fear that many have and it’s something that an individual must push through. In living with a chronic condition, there will always be times when we feel weak, but it is our responsibility to power through and uncover moments within exercising that make us stronger. As time progressed, my level of comfort in the gym grew, and my idea of what strength was began to shift. Not only was I physically feeling stronger than I ever had in my life, but more so, I mentally grew stronger. I really do believe that working on my physical health catapulted me on a journey to finding strength everywhere, not just in the gym. However, not every journey is perfect.

The more time I spent strength training, the more I began to get frustrated trying to build muscle. An uncommonly known fact about IBD for some is that individuals with UC or Crohn’s typically have a harder time putting on muscle. Sarcopenia is the reduction of muscle mass/strength and it exists in roughly 52% of Crohn’s patients and 37% of UC patients. [1] This is still an ongoing and evolving area of research, but it explains why for some IBD patients, it is extremely difficult to put on muscle. Many things drive sarcopenia in IBD patients, including chronic inflammation, vitamin D deficiency, adiposity, malabsorption and the dysregulation of the muscle microbiome axis. [1] Protein intake/absorption is usually reduced in IBD patients, so it is typically recommended that higher protein intake could serve as a solid attempt to prevent muscle loss. [1] This could result in a lot of frustration for IBD patients, and it needs to be recognized that it is not you; it is the IBD.

The science behind this phenomenon is very complicated and ever evolving. The reason I highlight this fact is that if you are like me and are on your journey with exercise, the frustrating roadblocks you are experiencing specific to exercise are not uncommon. Keep going and find what makes you feel good physically. For me personally, it was strength training, and my roadblock was the struggle to build muscle. Nevertheless, I will continue to do what makes me feel good while trusting the process and recognizing that IBD will always affect every area of my life. Whether we realize it or not, our IBD will always be there and try to prevent us from progressing in certain areas that we didn’t even realize it would affect. We must accept this and move on without letting it stop us. It is extremely important to talk to your doctor about the role of exercise in your life and what your body is capable of doing in the moment, taking into consideration disease activity. I hope that every person with IBD finds their own form of exercise that makes them feel happy, at peace, and above all, strong!

References:

1.         Dhaliwal A, Quinlan JI, Overthrow K, et al. Sarcopenia in Inflammatory Bowel Disease: A Narrative Overview. Nutrients. 2021;13(2):656. doi:10.3390/nu13020656

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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.

Pregnancy & IBD: My Experience

By: Dr. Fasika Teferra

Pregnancy is a gift from above. I believe when a child is born, so is the mother. I am a completely different person now than I was a year ago. There is no one specific time, but the whole pregnancy and childbirth experience changed me to the core. The journey was not perfect; I had so many lows, as I had highs. Although it is difficult, I wouldn’t change a thing, and here is why.

I had always wanted to have a baby at an early age. I was never taught what it means to be a mother nor what a child expects of you; they don’t teach that in med schools. It was fair to say that I never got the proper guidance from anywhere, but I believe it is like that for most moms. We don’t know what we are getting into until we are actually in it.

The first time I felt this was when I was in labor. The word I could use to explain that moment is stuck. I felt stuck because I couldn’t do anything to make the pain go away. It reminded me of the awful pain I had around the time I was first diagnosed with Crohn’s Disease. I couldn’t take any medicine to make it stop (there were no epidurals in Ethiopia when I gave birth). I was not in control, which is something I was accustomed to. All the labor related videos I watched and the breathing technics by doulas didn’t help because I was in over my head. Labor sucked.

But my pregnancy journey was amazing. I loved seeing my belly grow, feeling my baby kicks, assembling his crib and getting him cute outfits. Although the fear of relapsing still lingered at the back of my mind, it was easy to set it aside and enjoy the process.

I am well aware that I was able to stay in remission throughout my pregnancy and that could have contributed to me having a medicine free throughout my pregnancy. I experimented with a lot of diet and meditation just to make sure I stay in remission. As each person’s journey with IBD is different, I encourage you to work with your doctor to find out when it is best to have a baby. I hope that for anyone reading this article that may want to be a mother someday but is scared, I am here to tell you that you shouldn’t be. Pregnancy and delivery, whether you have IBD or not, is a rollercoaster ride, but one that is worth it in the end.

Grief with IBD: Remember to Turn on the Light

By: Maalvika Bhuvansunder

Grief is a term generally associated with the loss of a loved one. In this scenario, the loved one is me. Grief for me was losing the person I used to be before my Crohn’s. I was always a happy and vibrant kid who would just never stop talking, never one to make plans beforehand, and was very flexible. I used to take life easy and would never overthink any scenario. I became a completely different person, to be precise, the exact opposite of who I was before. I’m always overthinking, moody, and can not function without a plan. It felt that instead of being a part of my life, Crohn's became my life. Activities that used to bring me happiness like dancing and reading, were no longer of interest to me. I used to love going out with family and friends, but the thought of going out scared me. I felt the safest inside my house, having minimum interaction with the outside world. This “safety”, however, did not bring me any happiness. I was constantly miserable even when I was not in a flare. My mood started reflecting on my behavior with others. I was constantly snapping at my family and getting angry for no reason. I became this person that I could not recognize. I remember distancing myself from my friends and internally blaming them for the distance.  

After a struggle of three years, I reached a short-term remission in 2019. The timing could not have been any better, as I was relocating to Manchester to pursue my Master's. For my Master's thesis, I was researching grief and suicide bereavement. That is when I had my eureka moment! The themes that emerged from the research were isolation, anger, guilt, and loss of interest in activities that once used to bring them happiness. During this research I realized these were the exact emotions I had felt. Upon self-reflection, it made sense that, in a way, what I experienced was a type of grief. Grieving the girl that used to get happy at the smallest of things, the one who used to take life as a beautiful journey, and the girl who never used to get angry. I was using unhealthy coping strategies to make up for the grief I felt from losing the person I was before.  Along with grieving the past me, I was grieving the future. All these questions of will I be able to work, find someone who accepts my condition, and a lot of other things. I remembered one of my research participants expressing how much she lost in the present day by worrying about her past and future; it was completely futile. This type of grief is something I am sure many individuals with a life-long illness might feel but would not have realized what it meant.

““Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.””

— Albus Dumbledore, 'Harry Potter And The Prisoner Of Azkaban'

At that particular moment, this quote from Harry Potter resonated with me: “Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.” I was so focused on hating my situation that I forgot to switch on the light in my life, to appreciate those that stuck by me. Crohn's may have played a part in this internalized grief of mine, but it was me that refused to see the good things. Yes, I am no longer the girl I used to be; however, Crohn's made me a much more resilient and empathetic individual. It instilled in me the sense of being nonjudgemental and understanding others struggles. I started to appreciate my body for working its best to survive despite the condition. I was grateful for my family and friends that stuck by me despite my infuriating behavior. It was an eye-opening moment for me.

I made a promise to myself to start doing the things that once bought me happiness, no matter how small they are. We cannot change the past, nor can we predict the future. Why waste away our present amidst this?! It is very natural to grieve the things we lost due to our illness and what we think we might miss out in the future. At such times, I stand in my balcony and remember to switch on the lights in my present life and find happiness in the smallest moments. When we have an illness that takes a huge toll on our body, we must make sure that on the days we do feel okay to make the most of it.

Energy Management with a Chronic Illness

By Varada Srivastava from India.

Featured photo by Pixabay.

Finding a way to manage time with a chronic illness is a complicated process. It can be frustrating to figure out the new normal when you are originally diagnosed. For people with chronic illness it can be very difficult to figure out what is physically and emotionally possible for us to do that day. There are a few theories that have come to help us cope with this.

Moreover it’s very important for people who don’t have a chronic illness to understand it.

Christine Miserando is a lupus advocate who is known for coming up with the spoon theory. According to her, the difference between being sick and being healthy is having to make choices or to consciously think about things the rest of the world doesn’t. The healthy have the luxury to live life without having to make constant choices which is something most people take for granted. People with chronic illness are given a certain amount of spoons whereas healthy people have an unlimited supply. In her story, she gave her friend 12 spoons to get through the day. Each spoon represents the amount of energy we have for a certain task. For people with chronic illness, each task is also divided into smaller tasks.

For example: wearing clothes in the morning requires a series of decisions in which we have to keep our illness in the front of our mind. If you are getting blood drawn that day, you need to make sure to not wear long sleeves; if you feel the onset of body ache, you need to wear warmer clothes. These micro calculations take up the majority of our mental space. Do I take my medicine before or after lunch? Should I just wear a summer dress to relieve the pressure on my stomach? Are my hands too sore to handle buttons? I can't do many tasks if I take pain medicine. These are only a few of the many questions we tackle everyday. Each task requires a game plan. This constant mental gymnastics is incredibly tiring.

Emmeline Olsen wrote another article for IBD New Today which focused on the pitfalls of following the spoon theory. The spoon theory is based on the loss people with chronic illness face. But according to Emmeline, having a chronic illness piles stuff onto our original to do list. She gave the analogy of a filled bucket, healthy people can fill their bucket as much or as little as they want. Having a chronic illness is like filling the bucket with stones, each time you do a task which is exclusive to people with chronic illness, a stone is added to the bucket. Having a flare is compared to having a bucket filled to the rim. The worse the disease gets, the heavier the bucket is, the more chance it has of overflowing.

Having read both these theories, I think I tend to follow a mixture of both. Right now, I'm in remission, I am able to carry a heavier bucket. Doing daily tasks is comparatively easier and the stones in my bucket are less. However during a flare when I don't have enough energy to get out of bed the thought of lugging a bucket around seems exhausting. The amount of tasks seems overwhelming. That's when I like to follow the spoon theory. It helps in breaking down everyday tasks into smaller, more manageable activities.

Dealing with a chronic illness is very subjective, while some things work for one person they might not work for others. The goal is to find what works best for you, mostly through trial and error. And while going through this process it is very important to remember to be kind and patient with yourself.

Keeping Up with Your Care

By: Isabela Hernandez

Having a chronic condition isn’t easy. It’s something that needs constant upkeep, monitoring, and attentiveness. For me, a sometimes lazy 22-year-old college student, keeping up with my care is at times the last thing I want to do. I’ve neglected to refill my prescriptions, get my labs done, and reschedule my appointments. It is not something I am trying to recommend to anyone, but the difficultly of taking care of yourself is sometimes just plain irritating and difficult.

The way I’ve justified this behavior is: if I am going to have my ulcerative colitis forever, then I can take care of this later.

It creates this toxic cycle of neglect that can lead to dangerous outcomes. Once I let this neglect and annoyance take over, it’s difficult to pull myself out of it. Sometimes my wakeup call is even a mini flare. This would happen to me because I would view my disease as this burden that I could never escape. Something that only I had to constantly maintain day in and day out, and no one else. With this mentality, there was no way I was going to stay on top of my care. I would ignore things and push appointments off as much as possible. However, after my neglect facilitated the progression of an intense flare, I realized I needed to incorporate my disease into my life in a positive way.

What helped me the most was just treating my ulcerative colitis as a class that I needed to do assignments for and keep up with.

I started to schedule things into my day and treat it as task, rather than a pestering duty that if I didn’t do it, my health would suffer. Sometimes I would even write things into my planner so I could visually see that at this hour I absolutely needed to take my medication and at that hour I needed to call my physician for follow up labs. These were small changes that helped me stay as present as possible while trying to take care of my Ulcerative Colitis. It is something easier said than done but it is okay if you sometimes feel like taking care of yourself is too much and it is too hard. It’s because it is. It’s hard, its draining, and sometimes laziness takes over.

IBD patients are fundamentally built in a way that our health is the one thing always consuming our thoughts, and at some points this mentality overwhelms the mind.

And it is ok, too, at times get angry at our disease and wonder what life would be like without it, but this does no one any good. If you’re anything like me, finding ways to schedule health tasks into your day rather than just “getting around to it” really changed how I take care of myself. It relieved stressors that would follow if I didn’t do certain things for my care and allowed me to just do the task and move on. Just remember that even on days when we don’t feel like taking care of ourselves, we are still doing the best that we can do. 

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.

The Impact Patient Advocacy has had on my Life

By Varada Srivastava from India.

“Patient advocacy has helped me feel a part of a community as well as cope with my illness.”

Patient advocacy is something I was first introduced to thanks to the blog of Natalie Hayden. She's a former news anchor and author of the blog, “Lights Camera Crohn’s”. A person who suffers from chronic illness has to constantly face challenges since the time of diagnosis, which is excruciating, to say the least. Overcoming challenges faced throughout our journey, from diagnosis to daily life, is something many of us experience. In fact, it seems like I would break down every time I read her blogs. I spent the entire day reading her blog and crying.

Many people don't realize the severe impact that chronic illness occupies in the lives of patients. How much chronic illness impacts our daily lives. Fighting an invisible illness is often isolating and heartbreaking. I discovered Natalie Hayden’s blog probably 5 years after my diagnosis and that was the first time I did not feel alone with my disease. I acknowledged the importance of patient advocacy when I realized that if I had this support when I was diagnosed, perhaps I would not have felt so lost until coming to terms with my illness.

India faces a lot of misdiagnoses because of health illiteracy, lack of medical facilities, and expensive medications. The feedback IBD patients may get is also typically insensitive.

Having a system of people who help you and encourage you during difficult times is crucial. It's easy to feel alone when you're struggling on the sidelines. And when people don't reach out, it can be difficult to stay optimistic. When it comes to Crohn's disease, it is often referred to as debilitating. And that it is. However, I’d also argue that what's really debilitating is constantly worrying about the unexpected.

It is common for Crohn's disease and ulcerative colitis patients to have what is known as "psychophysical vulnerability." 1 Stress, emotional distress, and inadequate coping skills can all have a negative impact on how the disease progresses and decreases quality of life. 1 There are always two types of reactions you receive from people. Friends who support us and people who give unwanted advice.

For several years following an initial diagnosis, the number of procedures and medications can be overwhelming. Determining trigger foods and finding medications that work, are also among the significant challenges. Having a network of individuals who have gone through the same process is helpful to a great extent. It has been an invaluable experience for me to connect with young adults from around the world who face similar challenges.

Patient advocacy has helped me feel a part of a community as well as cope with my illness. If you can find a friend who understands, even if you've never met in person, you can gain comfort. It may be something you didn't know you needed it until it was offered to you. I have accepted that rather than being afraid to reveal my disease, it is more helpful to be vocal about it and get advice on how to cope with it.

As a result of this, starting a support group at my university and applying for the Crohn’s and Colitis Young Adult Network fellowship has been two of the most rewarding personal experiences in my life. Being able to help others with things I have struggled with, is an incredible opportunity for me. I'm very grateful to patient advocates for this reason. The awareness of autoimmune disorders is constantly growing all over the world and I feel blessed to be a part of it.

Featured photo by Polina Kovaleva on Pexels.

Resource: (1) Bonaz BL, Bernstein CN. Brain-gut interactions in inflammatory bowel disease. Gastroenterology. 2013; 144(1):36-49.

My Ileostomy Story

By Carina Diaz

In May of 2021, I went to the ER for what felt like the millionth time. I had been struggling with cysts and abscesses forming in my vagina for the past three years and this time was no different. Or so I thought.

I had already been to the ER earlier that week and was seen by a male doctor who, in hindsight, wanted to quickly drain the cyst and get it over with to move on to the next patient. I told him that I wanted a CT scan, but he said it wasn’t necessary. For my second ER trip of the week, I was seen by a female doctor. I made a comment about this being my eighteenth time having to do this in the last three years and with a look of concern on her face, she said, “That’s not normal. Let’s do a CT scan.” To which I said, “Brilliant idea.”

The part that I hate most about going to the emergency room is having to wait. And wait. A nurse takes your vitals. Then you have to wait. Someone comes to get your insurance information. More waiting. You tell the doctor what’s wrong. Even more waiting. The doctor comes back with a nurse. They do what they need to do. And you wait some more for either discharge paper work or to be admitted. 

After getting a scan, it was decided that I would need incision and drainage surgery. But guess what? My gynecologist only does surgery at one hospital and it wasn’t the one I was currently at. So I had the joy of, you guessed it, waiting for an ambulance to come to transport me to another location. Watching the night sky through the back windows wouldn’t have been so bad if I wasn’t strapped to an uncomfortable bed made of plastic.  

This was the second time I’ve had to get incision and drainage surgery, so it wasn’t a new experience to me. What was new was being presented the choice of potentially having to get ileostomy surgery. It would give my colon a break and let the fistula heal (a surprise that was discovered during the surgery). 

To be honest, getting an ostomy bag was the worst-case scenario in my head as someone with Crohn’s Disease. It sounded scary and uncomfortable. What clothes could I wear? Would people see it? Would I smell? Am I going to wake up in pain after the surgery? When the hell will I be allowed to eat?! I don’t want a poop bag strapped to me. All of these thoughts were floating in my head while three doctors stood in front of me explaining the process. The good thing was that it would be temporary. 

I let a doctor use a robot to cut me open and pull a bit of my intestine out. I didn’t wake up in pain, but I was scared to look at my body. The rest of the week was a blur of learning how to empty it, clean it, and how to live with this new change.

At the time of writing this, I’ve had an ostomy bag for ten months. While it has greatly improved my quality of life and lowered the severity of my symptoms, it has definitely been challenging. I have three different skin conditions, so my torso really hates having something taped to it. I have yet to find a bag that doesn’t irritate my skin. During my second month after surgery, I kept getting blowouts at night and barely got any sleep. It was painful and itchy. My ostomy nurse likes to describe me as “a real head scratcher.” 

Having IBD makes me think a lot about the duality of life. I’m grateful that this surgery was an option for me because it has helped in many ways, but I still have to make sacrifices. I still have to deal with discomfort, and I’ve had to relearn my body yet again. That cycle will continue when I eventually (hopefully) get reversal surgery at some point.

Some people have positive experiences with ostomies and say that it has given them their life back. If that’s not the case for you and you’re also struggling with having an ostomy, try to remind yourself that you’re doing your best. Take it one day at a time and cry when you feel the tears forming. I recommend watching your favorite show if you’ve had a hard time changing your bag. Those stomas can be so unpredictable.