My Leadership Journey with IBD: It’s All About Mindset

By: Dr. Fasika Teferra

I am a person living with Crohn’s Disease. It has taken me a long time to accept and learn to live with the condition, and through that time, I realized that I had a passion to serve the community. I had always been told the only institution that does good is a nonprofit, which was what pushed me to pursue one. I am thankful for the journey and all the life experiences that came with it.

Dr. Fasika Teferra featured in Lights Camera Crohns: An Unobstructed view in March 2021. Click the image to visit the article.

Being a co-founder of a nonprofit working in the IBD sector meant a lot to me, IBD patients, and the community in general. Since IBD had been assumed as rare in our country, IBD patients found comfort in knowing that there is an organization dedicated solely to increasing awareness to the condition. It also helped me to sharpen my leadership, communication and many other skills as I was the only one in the public talking about my condition. It also meant a lot for the community in general as I got feedback from many other people living with other noncommunicable diseases to see if they can replicate my path and raise awareness about their conditions as well! I had such a great impact that it shocked many to hear that I resigned 3 years into this work.

As I was starting out, I made a commitment to myself to create some type of ground work before I even attempt to apply for a grant. My reasoning was that since there is virtually no data on the condition and no one coming forward saying they had IBD, I believed I had to have a track record of projects and impact to convince the grant makers. In my mind, since those around me didn’t even grasp what IBD was, how can an institution support my vision for the IBD community? It had been so stigmatized that it took me well over two years to even get people to join our virtual community. Almost 3 years of full time service for this cause helped me learn a lot of things, especially when it came to grants and community work.

Dr. Fasika Teferra featured in The Guardian in October 2022. Article by Saeed Kamali Dehghan. Click on the image to visit the article.

From my perspective, I believe I took the right path as I was starting out. But as time went by, I realized how hard it was to receive any funding to local grassroots organizations. For the most part, there was a need for data as proof of the number of people living with IBD (rightfully so), but there needed to be some form of financial support to conduct that research. I was also introduced to the term social enterprise in the middle of my journey. Having worked with my husband in growing his business, I realized that it is not just nonprofits that do good in the community, and that is is all about mindset.

I would not have changed anything if I were to go back in time. I think my time in the nonprofit sector has taught me so much in terms of resource utilization and the skill to craft services tailored to the community’s need. After asking all the relevant offices, I have learned that there is no special license for social enterprise. After speaking to a couple of social entrepreneurs, I realized that social entrepreneurship is nothing but a mindset, atleast in my country. Having gone through the challenges of financial support for the organization while working full time as a volunteer for 3 years, I understand that it is now time to use my resources to create a system where I can multiply and triple what I have so I can be one of the local donors to this and other initiatives in Ethiopia.

I think being a first-time mom, being in remission, and having a strong desire to be a change maker in the healthcare system in Ethiopia has made me sit down and re-think a lot of things. Time and energy are resources that are precious in my opinion, and recalibrating those to maximize my impact in my community was crucial. Most don’t understand my decision, but that is okay. I believe that passion and vision mature and take different routes than anticipated, and I can only show the vision I have in my mind by bringing it to life. Although it is multifaceted, I have already taken the first step, and is almost ready for implementation. It has been a passion of mine to work on health literacy, but doing it in a way that is sustainable and most impactful had been a mystery to me until recently. I will be sharing my initiative in detail in the next article as it might be modified and replicated in other parts of the world.

Should You Be Open About Your IBD With Others?

By: Isabela Hernandez

I’ve often wondered the effects of how open I’ve been about my disease, through these articles, on the mental coping of my disease. It has gotten me to look back on my journey and the strides I’ve taken when sharing the mental and physical fatigue I deal with. I used to be very closed off when it came to all things IBD. I would tell the people around me that I have “stomach issues,” and that’s it. As I entered into my advocacy journey, I started letting the people around me in; giving them the information I withheld for so long about a part of myself I repressed from the outside world. I truly believe that through this, I have been able to mentally process my disease better. So, this is where I wonder: does being more open with your disease mean better outcomes? Or alternatively, does being private about your disease mean you are able to maintain sanctity within the crazy experience that is having a chronic disease?

It can become exhausting trying to share an experience with someone that will never truly understand what it is like to be in your shoes.

As I spoke with another 2022 fellow, Carina Diaz, about this, and she expressed, “It’s exhausting to continuously have to educate people closer to me on IBD, especially family. I’ll either point them to resources so they can do their own research [like content made by fellows] or tell them that I’m not talking about my health at the moment,” which is something I feel and relate to daily. Even though I am open to those around me about my IBD, they still sometimes look at me with eyes of confusion, never fully grasping what I tell them. It can become exhausting trying to share an experience with someone that will never truly understand what it is like to be in your shoes. So, this somehow supports the argument that being private about certain parts of your IBD can actually save you from the exhaustion that comes from having to share very personal parts about yourself.

I encourage every IBD patient to find a community of patients your age to talk to.

However, Carina also mentioned, “It’s comforting to know I’m not the only young person who sees their doctors more than their friends.” I have come to the conclusion that there are two ways that I find best when being open about your disease. I believe being completely transparent, and not holding back, with other individuals who suffer with IBD through peer support absolutely shifts the way you will view your disease, while being open but maintaining healthy boundaries with friends and family will help them grow in their understanding of your disease while allowing you to maintain autonomy within your space as a patient. Having peer support through the IBD community is one of the best things that has ever happened to me and something I am eternally grateful that I found. I encourage every IBD patient to find a community of patients your age to talk to, hang out with, or even just meet virtually and challenge yourself to share parts of your journey you have been too embarrassed or scared to share. I used to think that certain parts of my life were too much or too humiliating to share to others and that they were these huge parts of my life that could never be lived down. However, I’ve found that once you share them, you realize they’re actually not that big, and they become just small, formative parts of the journey as a person. It is even more comforting to share them with people who you know, in some way, will understand.

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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.

Reflecting on My Journey as a Patient Advocate

By Varada Srivastava from India

I notice a common thread running through my life that began with some of my earliest memories
as I consider the road that led me to pursue patient advocacy. My advocacy work began in 2020
after COVID-19 struck, despite the fact that I was diagnosed with Crohn's disease at the age of 15 in
2015. 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”.

Starting a support group for people with chronic illnesses at my university was the first
project I worked on, and it was one of the most fulfilling experiences of my life. My
previously depressing and challenging diagnosis experiences suddenly had a new silver
lining. I was able to help others who had just received a diagnosis, just as I had hoped
someone would be able to help me.

While doing more research on the patient advocacy movement online, I came across
multiple organizations supporting and promoting it. One of those organizations was the Crohn’s and Colitis Young Adults Network. I decided to apply for the CCYAN fellowship and it was one of the best decisions I've ever made. After encountering several medical professionals and patient advocates during my time with this organization, I have come to the realization that patients frequently take
charge of healthcare movements - bringing crucial viewpoints to the frontline of the medical
profession. Working together benefits the industry as well as the patients. Motivated
patients are frequently passionate, outspoken, and organized in their pursuit of the medical
establishment's responses and the advancement of change. Social media has made it
feasible for many of these bigger conversations, and we need to pay attention.

On a personal level, I can now better manage my sickness and feel like I'm a member of a
community thanks to patient advocacy. Even if you've never met in person, you can find
solace in a friend who understands. Before it was offered to you, you might not have known
you needed it. I've come to terms with the fact that speaking up about my sickness and
seeking coping strategies is more beneficial than hiding it out of fear. Patient advocacy has
allowed me to work with excellent organizations and meet wonderful people. It has given
me a sense of purpose and helped me adopt a more optimistic perspective on my illness. I
intend to continue working toward it as long as I can.

Getting active in patient advocacy is possible in a variety of ways. There are several groups that
offer patients help and guidance as they begin their advocacy journey. Some of these include CCYAN, Generation Patinet, and many support groups across various social media platforms.

Featured photo by Prateek Katyal from Pexels.

Saying No is Ok!

 By: Isabela Hernandez

There are going to be days when your IBD is acting up, and you do not feel up to going to events or seeing friends you’ve committed to seeing. Yet, you feel guilty for saying you don’t feel well. I used to struggle with this heavily. I would have a plan with friends that was made in advance, but the morning of, I’d wake up feeling extremely sick. Many thoughts would be going through my head. Do I go and stay in pain? Do I say I’m sick; would they believe me if I say I’m sick? Why do I feel guilty for changing my mind? I would try to explain to the people around me how I was feeling, but I could see in their faces they didn’t really understand how intensely my IBD affects me, especially socially. To them, me saying no was me bailing on spending quality time with friends for selfish reasons. For me, saying no was the only way I could preserve the sanctity of my physical and mental health. These experiences with friends have taught me many things.

There is NO reason we need to feel guilty for prioritizing our health, whether that be saying no to a friend or backing out of a plan last minute due to symptoms.

If your friends don’t try to understand how your IBD affects your life socially, then it may be time to reevaluate what these friendships mean to you.

Find healthy ways to communicate with the people you are close with to let them better understand your IBD - if you don’t let them in, they’ll never truly get to know you and your disease.

Be open with YOURSELF about what you feel and adjust your day based on that. Everyday is different and that’s ok.

Do what’s best for you!

Now, those around me know when I say, “I’m having some symptoms today, I don’t think I can go,” that it is not personal, but I need to focus on myself that day. I’ve found people who have learned to respect that and really understand what I feel. I challenge you to put yourself first and learn to prioritize your health, even when it’s hard.

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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.

My Fog is Feeling Very Brainy

By: Carina Diaz

FYI, this is about brain fog (in case you’re confused about the title). It’s one of the most complicated symptoms to explain to able-bodied people, along with fatigue. Because anyone can feel those things, right? Well … kind of. A person with IBD experiences it very differently. 

Since being on inflectra and having ileostomy surgery, my brain fog hasn’t been too bad, but it’s still something I feel often. Sometimes when I’m having a conversation with someone, it’s like my brain glitches for a moment, and I not only have to remember where I am, but what I was even saying a second ago. It causes me to stumble over my words and say “um” a lot. So much for sounding articulate. It also conveniently happens a lot at doctors appointments.

It’s true that anyone can have moments like these, but when you have IBD it’s a more common occurrence. I can get a full night’s sleep, eat right, exercise, and take care of myself as much as possible, but brain fog will still happen. I’ve lost track of the number of times I’ve opened an app on my phone or walked into a room just to forget what I’m doing in the first place.

This is a very hard symptom to put into perspective. It almost sounds like it’s not that big of a deal. Especially when compared to the laundry list of awful symptoms that IBD can bring. So let me try to paint a picture. For me, brain fog is like a cloud that follows me. Some days it’s big and other days it’s barely visible, but it’s still always following me around. I’ve learned I need to write everything down in my notes app and use Google Calendar to keep track of work and appointments, or else I’ll forget everything in an instant. 

Brain fog mostly affects me in social situations. It’s very hard to follow along with conversations that involve multiple people. It’s as if existing, breathing, listening, and thinking are all too difficult to do at once. It tires me out, and the only thing I can really do about it is to take time to rest. 

Instead of my brain forming thoughts, it feels like a big empty space. Or sometimes it’s the opposite and turns into that one episode from SpongeBob where there’s multiple filing cabinets on fire and he’s running around frantically. Nickelodeon

It also makes it difficult for me to communicate. The process of thinking thoughts, forming those into words, and then my mouth saying them becomes quit tedious. 

It can be easy some days to feel very frustrated about dealing with this. These are some things that help me to deal with this symptom:

• Being gentle with myself

• Doing a brain dump in my journal or a voice note on my phone

• Leaning on my community

• Taking a nap

Brain fog is a friend I didn’t ask to make, so I just try my best to use the coping skills that I’ve learned over the years.

What I Wish I Knew Before Having an Ileostomy

By: Carina Diaz

It’s been a year and four months since my ileostomy surgery, and I’ve been in a reflective mood about it. This was my first and so far only surgery I’ve had for my Crohn’s Disease. I had first learned about ileostomies and ostomy bags on Instagram and then later on YouTube when Hannah Witton shared videos about her surgery. To be honest, it sounded like the worst case scenario. Little did I know that years later, it was a decision I would have to make.

There was so much I didn’t know about this surgery and what living with an ostomy is really like. I didn’t know that it was reversible (in some cases) and that it’s not considered an invasive surgery. While in the hospital, I accepted a job and ended up moving to a new city a month later The first month post surgery was very hard, and I had not been well prepared by the hospital staff before being discharged. Here is what I learned post-surgery and advice I wish someone had told me:

• Get the name and number of an ostomy nurse before you leave the hospital. This is so so important. I did have a home nurse come for a few days to help me get familiar with changing my bag, but after that I was basically on my own. I ended up having a lot of blow outs and skin issues and didn’t know of anyone to contact. Make sure to ask your hospital nurse or health insurance for a recommendation.

• You don’t get to choose how long you can wear a bag for, your body does. One of the hospital nurses told me that some of her patients could change their bags up to once a week and I thought to myself, “That’s perfect, I don’t need to change it too often.” But this wasn’t the case for me. I have eczema, and the skin where the bag goes was not happy about it. It took me almost a full year to nail down a changing routine that worked for me and it ended up being every other day. Everyone is different and there are so many factors when it comes to how long to keep your bag on for. The only way to know is through trial and error. 

• There are different kinds of ostomy bags for different types of stomas. The bags that hospitals supply you with are the cheapest of the cheap. Mine were clear and seeing not only my output but also my intestine was disturbing. Thankfully there are more options out there than just cheap ones with no air filter to let out the gas that can cause a stoma bag to balloon. There are also all kinds of products to help your skin and keep the bag in place. 

• Your weight could fluctuate…a lot. I was underweight before my surgery and had been for several years. Post surgery, I got back to my normal weight and then some. This has been one of the hardest things about an ileostomy for me. I was finally absorbing what I was eating instead of it immediately going through me. Body image is something that I’ve really struggled with since being diagnosed with Crohn’s, and gaining more weight than I’m used to honestly hasn’t helped that. 

Something that I keep reminding myself of when I got through hard things is that what I need is time. Eventually I will get through it and another difficult time will come, but by then I will be better able to handle it. Living with IBD is hard, and it’s best to be kind to yourself through it. 

My Journey with Health PTSD

By: Maalvika Bhuvansunder

World mental health day was marked on the 10th of October. In today’s world, there is a lot more awareness and acceptance regarding mental health concerns. However, not much is spoken about the relationship between having a physical illness and its impact on one’s mental health, or vice versa. I have always been very vocal about accepting and understanding mental illness and aim to be an advocate for those going through it. Being a student of psychology and hopefully a future psychologist, I felt it was my duty to contribute to destigmatizing mental illness. What I never expected was that I would have to be my advocate as well!

2017 was a very difficult year for me, there were a lot of new changes happening, from getting my diagnosis, to learning how to cope with it. My mental health was getting affected since then itself, but I was unable to recognize those signs. During my non-flare-up days, I’d still not be calm, because subconsciously I was always expecting a relapse or something to go bad. I would constantly overthink and worry, which was very unlikely of me. I started finding comfort in anger. Since I had no control over what was happening to me, Anger was the emotion I would always resort to because being happy caused me a lot of anxiety. Whenever there was a situation that went well and made me feel happy, after a few minutes I would be filled with the dread of something going wrong. I could never make impromptu plans, and any change in routine would get me to spiral into a state of anxiety.

“Since I had no control over what was happening to me, anger was the emotion I would always resort to because being happy caused me a lot of anxiety. ”

Starting to notice that these emotions and feelings were not just stress, I did my research. I realised what I was experiencing could be Health Related Post Traumatic Stress Disorder (Health- PTSD). It is commonly seen in individuals who are going through a lifelong illness (1). This was surprising to me, as being from the mental health field, I assumed PTSD only relates to extreme trauma in life, not realizing in a way, having Crohn's was my trauma. I was experiencing the anxiety of the surgery and reports indicating a relapse, the depression of the flare-ups, the grief of losing myself, and the fear of being hospitalised. I was experiencing this more once I reached remission, which made sense as I was experiencing it post-trauma. The trauma of the pain, of not being able to eat what I love, hating the way I looked, having zero social life, and many others. We do not realise how much an illness can impact you overall. Crohn's is more than just a physical illness.

My experience made me realise how important it is to advocate for this. I took the step of seeking help and was lucky to understand the signs, albeit a bit later. However, not everybody can recognize these signs, especially as there is not much awareness about the coexisting relationship between physical and mental health. PTSD is not just limited to the most spoken-about traumas. Trauma is trauma, the magnitude of it should not be a determining factor. It is okay to ask for help and seek help. We are always going to hear comments like, “you are depressed because of this?” or “people have it worse”, but don't let that stop you from seeking help. Only we know what we are going through and have to be our advocates!

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(1)  Pietrzak, R. H., Goldstein, R. B., Southwick, S. M., & Grant, B. F. (2012). Physical health conditions associated with posttraumatic stress disorder in U.S. older adults: results from wave 2 of the National Epidemiologic Survey on Alcohol and Related Conditions. Journal of the American Geriatrics Society,60(2), 296–303. https://doi.org/10.1111/j.1532-5415.2011.03788.x

Opening Up About Your Chronic Ilness

By Varada Srivastava from India

Since I was diagnosed with Crohn's disease, I've had trouble deciding who to tell and how to approach the subject of my chronic condition. It is difficult to casually bring up this topic in conversation. Usually, when you tell someone you have an incurable illness, the conversation becomes difficult for everyone. However, there are occasions when it can be cathartic and just what you need to strengthen your connection. This is what I've learned about Crohn's disease after having numerous awkward and amazing conversations about it.

It might be difficult to talk about your illness depending on where you are in your IBD journey or how open you are as a person. I found it quite difficult to discuss my diagnosis of Crohn's disease in the early years since I was still coming to terms with it. Seven years later, I feel more at ease discussing it.

The choice of whom to tell is even another challenge. When I was diagnosed, I was still in school, and I had no control over who knew about it. The majority of my students and teachers were aware because they watched me going through the diagnosing process. However, nobody was aware of it when I arrived at the university. I felt in charge of the coversation as a result, but I was also afraid about how other people might respond. Would they treat such a significant aspect of my life seriously? - was something I frequently wondered to myself.

I've had great luck to be surrounded by people who have supported me greatly while I've been a student. But negative experiences with this are inescapable. There will be people who downplay your difficulty or don't react with the greatest degree of empathy. We frequently believe that our condition is too complex to explain in professional situations or that it is private and should not be mentioned in the workplace. However, there are situations when you must inform others for logistical reasons, such as your manager, HR, or lecturers. They must be aware in order to offer you a little more flexibility at work. It might not be necessary to go into great depth about inflammatory bowel disease (IBD) at this point, but letting them know that you might need a few extra sick days or extensions and explaining the need for them may be beneficial in the long term.

Keep in mind that people might ask follow-up questions and it's completely acceptable if you don't want to elaborate. You decide how much information you want to share with them. Nevertheless, I discovered that when you have an incurable condition, being honest about it is a crucial and necessary process (even if you do it occasionally with the wrong people). The majority of people are kind and will react positively. But if not, remember that the conversation about your chronic illness doesn’t have to be seamless each and every time you have it. You can view it as a learning opportunity and overtime you’ll learn what details you feel comfortable disclosing, and with whom.

Featured photo by Koma Tang from Pexels.

Social Media’s Influence on Gut Health

By: Isabela Hernandez

We must be very cautious on what social media tries to sell when promoting these gut healing products.

I can’t be the only one who was succumbed to the influence of “gut tik tok” or Instagram posts claiming that a magic powder from Amazon will cure your gut. I see these posts, still knowing that I need to be trusting professionals over influencers, and a small part of me wonders Is this the cure I’ve been looking for? On days I’m writhing in pain or annoyed about my medications, I truly do think about buying into an influencer's recommendations on how to heal your gut and buy the millions of supplements they promote. Maybe I won’t ever have to take medication again! BUT, we must be very cautious on what social media tries to sell when promoting these gut healing products.

“I see these posts, still knowing that I need to be trusting professionals over influencers, and a small part of me wonders Is this the cure I’ve been looking for?”

On days I’m writhing in pain or annoyed about my medications, I truly do think about buying into an influencer's recommendations on how to heal your gut and buy the millions of supplements they promote.

It’s always disheartening for me to see people who have managed to “cure” their gut with products I’ve never heard of and wonder, is it even true? Most of the time, it is not. But it’s hard for us, those who have suffered with these diseases for a while and will continue to do so, to see these videos and not feel a flicker of hope that maybe our cure lies in the next new gut supplement. I’m not saying all the information on social media related to gut health is bad, some of it is very informational! There are many trained professionals out there who make incredible content based on diseases of the gut. We just need to learn, as a community for people with GI issues, to follow professionals who we trust to give us well-informed advice. It’s important to use social media as a means of getting trustworthy information, not gaining false hope by influencers with promotional content that lacks real evidence. This is definitely something I need to work on as well but I trust we will all be able to find a healthy balance when it comes to social media.

“ It’s important to use social media as a means of getting trustworthy information, not gaining false hope by influencers with promotional content that lacks real evidence. ”

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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.

Butterfly Effect: My Journey into Designing for Accessibilty

By Natasha Kacharia from the United States

A butterfly flaps its wings in the Amazonian jungle and a typhoon occurs in Europe. Tiny things,
according to Chaos theory, are the things that change the world. I am not sure if this applies to the world
around us, but what I know for sure is that a sequence of small events shaped my passion for digital
design, specifically in the field of accessibility and healthcare.

Growing up, I designed skating dresses. I absolutely loved employing design and aesthetics to
create dresses that expressed who I was, that told stories. However, in addition to my love for design and
storytelling, I am also a numbers girl. I crave the certainty that disciplines such as computer science and
mathematics provide. My study in Stanford’s Computer Science track in HCI perfectly encapsulates both
my interests, as I firmly believe UX Design is another vehicle to tell stories. Utilizing graphic designs,
word clouds, flow charts, and data visualizations, I can create consistent and strong messages that
resonate with users. In addition to my time at Stanford, I had the opportunity to explore my love for
design in the workforce. At Microsoft, I designed and prototyped in-app training content to onboard new
employees with MSXI applications, utilizing software such as Figma, Power BI, and WalkMe. At Ford, I
designed an interactive quiz for consumers to help them determine if buying or leasing their next vehicle
is right for them. Both these experiences solidified my passion for human-computer interaction.

Yet, while I knew I wanted a career in digital product design and I knew I wanted to make a
positive impact, I lacked insight on what. It was through an invitation as a fellow to attend the 2021 Lime
Connect Symposium – a leadership development program designed for high potential university students
who happen to have all types of disabilities – that I realized I was meant to design in healthcare. From the
age of 17, when I was diagnosed with the autoimmune disorder ulcerative colitis, I have had an ever-
growing interest in the healthcare industry. But since I did not have a desire to pursue medicine, it did not
appear to be an industry where I could make a difference. Meanwhile, through my numerous emergency
room visits and hospitalizations, I noticed many gaps in the patient experience. For instance, my second
week of my freshman year of college, I was rushed to the emergency room for excruciating thigh and
knee pain. The medical staff spent an hour asking about my previous medical history and running the
same medical tests that I had undergone less than three weeks ago in my hometown’s ER instead of
attempting to relieve my pain, as they did not have access to my previous medical records. My experience
was not unique; there is not a seamless way for physicians to access past records or for patients to transfer
them to new hospital systems. Some other common pain points of my patient experience have been
paying complicated hospital bills, coordinating with insurance, communicating my needs to physicians,
and obtaining medical help outside of regular business hours; many of these were only exacerbated by the COVID-19 pandemic. Through Lime Connect and then CCYAN, I had the pleasure of meeting other
disabled students and professionals who were using their past experiences, knowledge, and talent to affect positive change to make the world a more inclusive and accessible place, making me realize that I wanted to do the same.

Yes, I admit, there are some days that wish I did not have ulcerative colitis, but if I was never
sick, then I would not be me. My experiences, the good, the bad, and the ugly, have shaped who I am
today. I am not sure where the future will take me, but I am excited to flap my wings and hopefully make
the world a more accessible place.

Featured photo by Ash Moore from Pexels

How I Prepared for My Surgery

By: Maalvika Bhuvansundar

Hearing the word surgery is enough to give a lot of us nightmares. During my early stages of diagnosis, I was told of a future where surgery might be required, but I never thought such a day would come. Well, looking back at it now, I realize how wrong I was for assuming this. For a lot of us with IBD, surgery might be inevitable. However, there are also a lot of individuals with IBD who might not require surgery and could reach remission with medication and lifestyle changes. It wasn’t the case for me though. After six painful years of being sick, surgery seemed like the most probable solution. Got numerous tests done once again for the 100th time and realized that my intestines were narrowed. The good news was that Remicade was working well for me, and the narrowing was getting better but at a very slow pace! I was given two options, either I could get hemicolectomy surgery done or could rely solely on Remicade which might take longer to ease my symptoms. The following steps helped me make a clear decision:

Make a pros and cons list - having things written out helps make a more objective and rational decision.

• Get all the required tests done and always ASK for a copy of your reports.

• Always get a second opinion! It’s our body and we have every right to get as many second opinions as we’d like. Don’t let anyone tell you otherwise.

• Make a pros and cons list - having things written out helps make a more objective and rational decision.

• Ask your doctor every doubt you have regarding the surgery even if it may seem repetitive or irrelevant. It is better to make a decision with all your doubts and concerns answered.

Luckily for me, my aunt and uncle are both doctors, and they assured me that getting this surgery would be the best decision I took, and they were spot on! There are a few things to keep in mind for post-surgery:

Ensure they have given you the medications required to take at home.

• Always write down the instructions given for home care.

• Ensure they have given you the medications required to take at home.

• Do not leave without the discharge summary!

• There are chances of having constipation post-surgery; it is a pretty common side effect. Ask the doctors what to do if this situation pertains to avoid anxiety and stress regarding this once you are back at home.

• Do not miss your follow-up appointments!

Thanks to this life-changing surgery, for the first time in six years, I am symptom-free, and though I will always have the scar to remind me of the pain, it also reminds me of the decision that helped me lead a better life. This experience showed me that life could take a different turn unexpectedly. However, the scary choices may sometimes be the best ones we’ve ever taken!

Why You Need a Restroom Access Card

By: Carina Diaz

There is a law in 13 states called Ally’s Law, which requires retail establishments to allow people with IBD and other similar conditions to access an employee restroom if there aren’t any public facilities available. It got its name from Ally Bain, who has IBD. When she was 14, she was shopping with her mom at a store when she experienced a flare and felt the sudden urge to go to the toilet. 

Since there wasn’t a public restroom, she asked to use the employee restroom. She was denied access by a manager and had an accident in the store. Ally and her mom met with an Illinois state representative, and they drafted a bill allowing people to use an employee restroom if they have a medical condition. It became a law in 2005. 

I’ve had a card for a few years now and it has really saved me in times of need when my symptoms were very intense. Just knowing that it’s in my wallet has given me peace of mind. Though it hasn’t always been well received. Here is a list of some of the places I’ve used it and my experience:

• A concert venue: At this particular venue, they close off the main restrooms after a certain time. A friend came with me to look for a bathroom, and it ended up being quite the journey. We found porta potties, but I wasn’t comfortable going in one and really wanted more privacy. I talked to a security guard and he told me to go to the VIP section and explain that I have an illness. I was denied at the entrance and the employee didn’t even let me show the card or anything. Then, I walked back to where the main bathrooms were, which were close to the stage, and had to yell at another security guard for him to hear me. I held up my card, and he kept asking if I had a medical bracelet. After a few minutes of back and forth between him, my friend, and I, he called over his supervisor who kindly let me use the bathrooms. This was a stressful situation, and although it’s a popular spot for live music in the city I live in, I refuse to ever go again. 

• The post office: I was with my mom running errands when I felt the urge to use the bathroom. I took out my card, and my mom explained my situation to a worker who then walked me to a bathroom. I remember feeling pretty sick that day, so I was very grateful.

• American Eagle in a mall: This was my most positive experience using the card. I held it up and told one of the employees that I really needed to use the restroom. I don’t think she even read it, but without hesitation, she led me to the back where the employee restroom was. She was very kind about it and didn’t make me feel weird or asked questions. 

I learned about this law and the restroom access card through a Facebook group, but this is one of those things that would’ve been helpful to know of when I was diagnosed. It’s an important resource to have and has helped me be an advocate for myself. The Restroom Access Act has also made the outside world a bit more accessible for people with IBD. If only it were a law in every state and all over the world!

You can learn more about Ally’s Law and the Restroom Access Act on the Crohn’s and Colitis Foundation’s website and at the American Restroom Association’s website for the bills in 13 states. To get your own card (which also has a mobile option), you can go to crohnsandcolitis.com (this is where I got mine) or girlswithgurts.com.

When Chronic Illness Causes You to “Quit” A Commitment

By Mara Shapiro from the United States

I go back and forth on the connotation that I associate with the word “quit”. I’ll be honest; I feel like I have “quit” a lot of things over the years due to my chronic illness. While the initial sting of having to quit an extracurricular activity or cancel plans at the last minute is always painful, I have learned some lessons that help me cope with this inevitable chronic illness experience.

First, I want to tell you a story of my most recent experience of “quitting” a commitment. Earlier this summer, when I had just moved back to Virginia, I signed up for an intensive 3-week learn-to-row class. I was looking for an activity that would be social, allow me to be on the water, and help me build back my physical fitness. This rowing class was 2 hours every evening, 4 days a week, for 3 weeks. Due to the nature of rowing and the fact that the boat only rows if it is full of competent rowers, it was very crucial that you attend every practice (or gave the coaches enough notice to find a substitute) or half the group wouldn’t be able to row. This was a situation with as much of a forced commitment as I’ve found myself in since I was diagnosed. Very quickly, this commitment, while fun and empowering, led to a lot of anxiety.

What if I had to go to the bathroom while we were out on the water? Too bad; there’s nowhere to go if you are a mile away from the dock… 

What if I got tired and needed to take a break? Too bad; if you stop rowing in sync with the rest of the boat, you will tip everyone over… 

What would happen if I couldn’t make a practice or two? People would be inconvenienced.

I found some ways to deal with the anxiety of those thoughts by trying to rest before practice and going to the bathroom before practice, but even when I tried to control as much as I could, I realized that a lot of my life because of my Crohn’s disease is unpredictable… and that’s okay! It became an exercise of how much I could accept the unpredictability in order to participate in this activity with my chronic illness; I also had to deal with a great deal of anxiety over the “what ifs”.

Unfortunately, I wasn't able to finish the last week of the class due to a cellulitis infection and then a C. diff flare-up. I was really disappointed and it felt like I was “quitting” at first. However, I realized that even though I technically didn’t finish what I started, I still learned a lot through the experience. 

I am so proud of myself for trying something new and pushing myself out of my comfort zone. Even though it didn’t turn out as I had initially pictured, I still had a lot of fun. The fun I had while rowing is a type of thrill that I haven’t experienced since I stopped rock climbing competitively when I was 16. I had thought chronic illness robbed me of the ability to enjoy a new athletic sport, but this experience proved me wrong.

My advice to you is:

• Don’t let your IBD hold you back from trying new things! Having some fear and apprehension when embarking on a new commitment, whether it’s athletic, social, academic, or professional, is normal, but I encourage you to persevere and step outside of your comfort zone anyway!

• If you have to adjust your commitment once you start, that is totally okay and to be expected when trying something new! Don’t think of this as “quitting” as much as pivoting. 

I’m excited to know what new things you have tried since your diagnosis or what this article has inspired you to try!

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.