Saying No is Ok!

 By Isabela Hernandez (Florida, USA)

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 (Texas, USA)

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 (Texas, USA)

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 (Florida, USA)

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 (Texas, USA)

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 (USA)

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!