Life Hacks: How to Break Up with your Favorite Foods

By Rachael Whittemore

Photo by Sydney Troxell from Pexels

Just like that - we’re well into summer and I almost can’t believe it. Even though it feels like it’s been 10 years since January, I’ve thoroughly enjoyed all the fresh food that comes with this season. The days are longer, the fruit and veggies are ripe and I don’t feel weird about wanting to eat some version of a salad daily. I’m even starting to learn how to garden! (TBD if anything makes it though!) However, as I think about some of my favorite summer foods, it also reminds me that for many of us living with IBD, it’s very possible that our bodies can’t handle some of our favorite foods anymore. After being diagnosed, we probably searched the internet for resources and advice on what to eat, what to avoid, and somewhere along the way we learned that what might work for you might not work for me. 

My co-fellow Lucy published a wonderful video last month about how she has learned to thrive with her dietary restrictions and how she’s managed her “break up” with things like dairy. Because having different perspectives can be helpful to all of us living with IBD, writing this was very important to me. I also felt led to write this because if you have met me, you know how much I LOVE food. Cooking food for others and sharing it provides a huge sense of community for my family and me as it does for many others. Certain foods are tied to family by culture, tradition or memories, and it can be a challenge to really stop eating foods that may have been fine before. It also may take time, especially if they were a large part of your diet pre-IBD. Here are some tips for getting away from IBD-problem foods and to find joy in what you can eat and let it nourish your body. 

1

Work on accepting that you and this much-loved food and/or food groups just don’t get along.

Living with chronic illness requires us to work through a lot, both physically and mentally. Accepting that we have a lifelong illness is hard in so many ways, especially one that can be unpredictable, embarrassing and frustrating. Accepting that I can no longer eat certain foods I love is difficult too, and we shouldn’t be embarrassed to mourn giving up parts of our pre-IBD life. For me, accepting that something isn’t working for me or my health helps me move forward as I try to live my best life. 

2

The short-lived happiness of eating said food(s) is usually not worth what comes later.

I have personally struggled with this in my journey to give up milk and cheese. I realized that I was likely lactose intolerant in college when I decided to do a month dairy-free. I didn't have IBD yet, but milk and cheese products had always given me issues. There are times when I fooled myself into believing my sensitivity wasn’t that bad, but as I have gone through extended periods of not drinking milk or eating cheese, I feel so much better. No pain, no constipation, less flares and much less bloating or gas.

3

Silver lining? There could be a certain way you can handle said food(s) or food groups.

If you can’t do cow’s cheese, maybe goat cheese works. In my case, I can usually handle regular yogurt without problems, and I will eat small amounts of it with fruit and nut butter to give my body some calcium and ~good bacteria.~ Maybe if certain veggies bother you, try cooking them waaaay down and adding to a favorite dish you like, or cooking them with no seasonings and adding them into something like a smoothie. I love to use baby spinach and greens this way! Other times, you may just decide it’s best to avoid something altogether.

4

Helllooooo substitutes!

The wonderful thing about living in an era where people are more aware of food allergies or sensitivities is that there are more and more substitutes for common food groups that you may need to eliminate.  Non-dairy, soy-free, gluten-free, grain-free, nut-free, egg-free, vegetarian, vegan...I know this list goes on and there are many I don’t even know about yet. I have recently tried oat milk and love it because it’s a little creamier and great for coffee and it’s far more sustainable than my usual almond milk. In terms of a vegetarian cheese (no lactose but does have casein), I thought all hope was lost until my roommate introduced me to this almond cheese. It’s my favorite affordable non-lactose cheese and even comes in a pepper jack flavor that’s awesome. Here’s a few links to other things I regularly substitute based on my current diet: my fav oat milk, mac n' cheese, yogurt (with dairy, dairy-free and lactose-free), almond and coconut milk yogurts.

5

Find blogs, Instagram accounts or online recipes that cater to your dietary needs.

This is something else that has been great to have on hand in our digital age. Especially during quarantine, I’ve been trying some new recipes and looking at ways I can eat the things I love without missing the things I had to give up. Sometimes you find some handy, simple tips that you end up carrying with you on your IBD-food journey. Like, who knew that coconut milk and cream created a great base for non-dairy ice cream? If you want a great online account to check out - my co-fellow Rachel Straining has an amazing blog and Instagram: @thenoglutengirl. Give her a follow and check out her amazing yogurt bowls, baked goods and realness about her journey with Crohn’s. 

6

Sorry, not sorry.

One of the most important things to do when you’re working on giving up or decreasing consumption of a food is to stick to your guns. It becomes much more challenging when you’re eating out with others and during the holidays. As tempting as it is to eat things you like and not feel like a burden to others, it’s so important that you don’t let this pressure get you down and cave (but I’m definitely guilty of this!). I’ve learned that being real about what I can and can’t eat works out both ways in the end - your body will thank you and you feel confident in the choices you’re making for yourself. You may not realize it, but it empowers your own self-advocacy. :) 

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These are a few tips just to get you started, but know that all of us living with IBD have gone through this or are still working through it. Sometimes our food tolerances change, and as frustrating as it can be, search for opportunities to try something new or create a new version of something that you miss that still tastes amazing. I empathize with you and understand the frustration of trying to find foods and a diet that works for your needs. IBD makes life harder sometimes, but I know so many people who rise to meet all the challenges they’re faced with. Breaking up with some of your favorite foods may not seem like a big deal, but I’ve been there and I’m still there sometimes. You have no idea how much I wish I could eat chips and queso! Especially if you’re newly diagnosed, take each day at a time and I hope you can find the silver lining one day and laugh at all the times you thought eating *said food* was ok and ended up in bed at 8 pm because of it.

Grieving with Crohn’s

By Simon Stones

I have experienced some loss over the years, none more difficult and painful than in 2019, when I lost my mum to pancreatic cancer. The pain was indescribable, like nothing I’ve ever experienced. In the weeks and months that followed, I had to adjust to the fact that overnight, my life had immeasurably changed. I now had to adapt to a totally new way of life – one which felt uncomfortable, unfair, and at times pointless. 

During these times, I was reminded of the grief people experience after receiving a life-changing diagnosis, like inflammatory bowel disease (IBD). Naturally, this type of grief is somewhat different to the grief experienced when a loved one dies, but it is still a form of grief. You are grieving the loss of your pre-diagnosis life... and it’s an important, and necessary process which you must go through. 

Grief strikes each person differently. After all, we all have our own, unique ways of dealing with challenges and heartache in life. A friend recently sent me a surprisingly accurate analogy of grief, which hit the nail on the head. It shows that for most people, grief of a loss, whatever that loss may be, never leaves a person completely. The loss never goes away, but it may change over time. 

Imagine your life as a box. Inside the box, there is a ball, which is the grief you feel, as well as button which when pressed, causes pain. During the early days after your loss, everything is new. Everything is raw. The ball of grief is overwhelming, and so large, that every time you move the box... that is, every time you try to move through your life, the ball of grief cannot help but hit the pain button – constantly. This represents that initial experience of loss – when you can’t control or stop the pain that you are feeling. It is just relentless, no matter how much others try to support and comfort you. At this point in time, it feels as though the pain is unrelenting, and will be like this for the rest of your days. 

However, over time, the ball starts to shrink on its own. As you go through your life, and as the box moves, the ball still rattles around inside the box. However, because the ball is now smaller, it hits the pain button less often. In one sense, you may feel that you can go through most days without having the pain button hit. However, when the ball does hit the pain button, it can be completely unexpected – and hurts just as much as it did during the early days of your loss. This could happen when you’re in a particular place, such as at the hospital, or when listening to a piece of music that reminds you of your life before your diagnosis. It could be anything that is personally meaningful to you. 

As time passes, the continues to shrink and with it, so does the grief for the loss we have experienced. However, we never forget the loss that we have experienced. We must acknowledge that there will be days when the ball does hit that pain button, and when it does, we must be kind to ourselves. 

“We must accept sadness as an appropriate, natural stage of loss.” 

Upon reflection, it’s quite easy to see how this analogy somewhat resembles the process we go through after loss. I’ve certainly seen it after the loss of my mum, but also thinking back to when I was diagnosed with Crohn’s disease. I’ve also observed this with other people I’ve met along the way living with a variety of chronic health conditions. However, the process isn’t straight-forward – nor something we can plan for. It’s personal for each and every one of us. 

In 1969, Swiss-American psychiatrist Elisabeth Kübler-Ross introduced the five stages of grief model. The model describes how people experiencing grief go through a series of five different emotions: denial, anger, bargaining, depression and acceptance. While the model has received criticisms, Kübler-Ross said that she regarded these stages as reflections of how people cope with illness and dying, rather than reflections of how people experience grief. What is certain is that these stages are not linear and predictable. 

Let’s start with denial. Can you remember the thoughts that went through your head when you received your diagnosis? Denial is an entirely normal reaction to rationalise those overwhelming emotions that we experience. You can almost regard denial as your human defence mechanism to when you receive that shocking news, and when you begin to think about what you have lost. 

Then there’s anger, which often consumes our souls once the denial starts to diminish. As the pain of the realisation sets in, and as your senses begin to heighten to your surroundings, those feelings of intense frustration and grievance set in, as we start to search for blame. For some, the anger may build up internally, whereas for others, their response mechanism may to be to lash out at everyone and everything around them. 

Along comes bargaining at some point. You know, the stage where you think, ‘What if...’ This serves a really important purpose – and often a temporary escape from the pain you’ve been experiencing. For there may just me small, tiny glimmers of hope, amidst the chaos and despair. 

There’s also depression. In the past, I’ve sometimes felt scared of the term – or rather, the label that can exist in society. But what’s unnatural about depression in these circumstances? It is an entirely rationale and appropriate response as you deal with a great loss. From the intense sadness, to the overwhelming lack of motivation, poor sleep and altered appetite – it’s all part and parcel of dealing with something as colossal as life-changing diagnosis. Again, the experience of depression will vary between every individual, and indeed within yourself, depending on ‘where’ you are at any given moment in time. 

Finally, there’s acceptance, although it’s certainly not ‘final’. Here, you succumb to the reality of your loss, and understand that no matter what you do, nothing can change that reality. This doesn’t mean that you are ‘okay’ or ‘happy’ with the loss that you have experienced; however, it does mean that you are getting your head around it, and are learning to live your life, albeit different, in the best way possible. 

I have no doubt that so many people living with IBD can relate to these different stages and emotions – which can often feel like one big mess, sometimes happening concurrently, and most certainly in a disordered, confusing way. There will always be days when you think, ‘I’ve had enough of this’ – I know I still have those, but they are less frequent as time goes by, and as I learn to adjust to present life. It’s a bit like being out at sea. Sometimes, the sea feels calm, and you can see the beauty in the world. At other times, the waves overwhelm us. When you feel like this, just remember to swim and look for dry land. It’s all we can really do. 

The Invisible Rights of Persons with Invisible Disabilities Act of India

On July 26, 2020, the United States celebrated the 30th anniversary of the Americans with Disabilities Act (ADA). I’ve known about the ADA for a few years now, and I think that it is a great thing! From an outsider’s perspective, what I admire the most about the ADA is its wide scope. The list of medical conditions that can be evaluated for disability benefits seems exhaustive and as inclusive as possible. Disability is very difficult to define in precise terms as it can be a very personal experience. Hence a policy like the ADA which has a wide scope of application should be adopted by every country that wishes to protect the interests of the disabled. 

The Rights of Persons with Disabilities Act (RPwD Act) is the Indian equivalent of the ADA. The full text of the Act can be accessed at http://www.tezu.ernet.in/PwD/RPWD-ACT-2016.pdf. The RPwD Act is introduced to be “An Act to give effect to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and for matters connected therewith or incidental thereto.” The definition of a “person with disability” adopted by the Government of India is the same as mentioned in the Convention - “a person with long term physical, mental, intellectual or sensory impairment which, in interaction with barriers, hinders his full and effective participation in society equally with others.” India was one of the first countries to ratify the convention. We did it in 2007. But the RPwD Act came into force only in 2016, and it is yet to be implemented by all the states of India. 

Leaving aside the poor implementation of the Act, the list of conditions that can qualify someone for disability benefits is very short and includes only 21 conditions, most of which are visible disabilities. People with these conditions are evaluated and given a disability certificate that mentions the extent of their disability as a percentage. This percentage determines the extent of support they can receive from the government. The RPwD Act lists all the rights and entitlements of a disabled person. It also lists various measures taken by the government to protect the interests of people with disabilities which include reservations for disabled persons in various areas like employment, education, land allotment, and developmental schemes. 

Ever since I began graduate school, I’ve had to speak up on several occasions for receiving appropriate accommodations. In these discussions, to highlight the seriousness of my condition, I often bring up the fact that patients with Inflammatory Bowel Disease (IBD) who satisfy certain conditions, and patients with ostomies receive Disability Benefits in the United States. However, since the Government of India (GoI) does not recognize ostomy/IBD as conditions that qualify someone for disability benefits, the university is not obliged to provide me any support. A couple of my friends suffer from multiple chronic conditions but do not receive any disability benefits, because they’re not disabled legally. 

The definition of a person with a disability as mentioned in the UNCRPD and adopted by the GoI is a dynamic one and hence, policies that are meant to benefit the disabled must be dynamic too. However, to my knowledge, there is no mechanism in place to extend the list of disabilities. Compared to the ADA, the RPwD has a very limited scope of application. Speaking as a young adult with IBD, most of us do not have insurance. We face difficulties in gaining and maintaining employment. The same is true for education. Our condition is treated as a taboo. Every aspect of our life is affected by our condition, and for those with ostomies, the problems get magnified. Is this not what a disability is defined to be? A person with a missing toe is 10% disabled according to the disability evaluation guidelines. A person with a missing colon is 0% disabled. Makes sense, right?

The GoI has recently published the draft of the National Policy for Rare Diseases 2020. The World Health Organisation (WHO) defines a rare disease as an often debilitating, lifelong disease, or disorder with a prevalence of 1 or less, per 1000 population. However different countries have different definitions. In the United States, a rare disease is one with a prevalence of less than 6.4 per 10000, and in Japan, the parameter is 1 per 10000. India on the other hand has no such parameter because of a lack of data which is due to a lack of proper health infrastructure that would enable such data collection. The draft mentions government support for the treatment of certain treatable conditions with an upper limit of INR 15 lakh or roughly 20000 USD. The government does not plan to provide any support to those with long-term conditions, citing a lack of resources, and recommends setting up digital platforms for donations. India spends less than 4% of GDP on healthcare. A lack of resources does not seem like a justifiable reason for refusing to support those with chronic and rare conditions when the fact is that India has one of the lowest expenditures on healthcare globally. 

Coming back to the topic of disability - will people with rare, untreatable, lifelong conditions, receiving zero support from the government, be able to participate in society as effectively as others? Are they not disabled as per the definition adopted by the GoI? The fact is that the RPwD act is itself disabled. It does not do justice to the millions of people suffering from many conditions that impact the quality of life, social participation, and academic and professional outlook. The fact is that most patients struggle to fund their treatment because chronic and/or rare conditions often require expensive medications and with limited or no insurance coverage, the battle to survive and stay alive is the one that most are fighting. Education, employment, and social integration are not even in the picture. 

The exceedingly slow pace of healthcare reforms and the lack of support for people with various chronic conditions that severely impact their lives makes me sad. I don’t know when the situation will improve. If in 2020, a country like India, which has ambitions of being a superpower says that it doesn’t have enough resources to support its citizens with rare chronic conditions and has a list of disabilities that includes only 21 conditions, what hope can I have? I also feel like the general population has never considered the problem of healthcare seriously. It has never been an issue during elections. So I guess, it’s us who are to be blamed. There’s a lack of unity among patient communities too. How do you rectify all these? Honestly speaking, I’m a naive person. The only thing that I can say is it shouldn’t be that difficult to come up with a system that ensures equal and unhindered access to opportunity for people, irrespective of their health condition. From my vantage point, I see a lack of motivation amongst our leaders, the healthy, and the abled population to work on issues related to the healthcare sector. I hope the situation improves in the future.

India celebrated 74 years of independence on 15th August, but young adults with chronic conditions like Inflammatory Bowel Disease are yet to be liberated from various shackles that bind them to the ground and hamper them from living a free, independent, and fulfilling life. 

That’s all from my side this month. Sayonara!

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References

1. https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm

2. http://www.tezu.ernet.in/PwD/RPWD-ACT-2016.pdf

3. https://indianexpress.com/article/cities/mumbai/maharashtra-yet-to-notify-rules-to-implement-disability-act-6534983/

4. https://upload.indiacode.nic.in/showfile?actid=AC_CEN_25_54_00002_201649_1517807328299&type=notification&filename=Guidelines%20notification_04.01.2018.pdf

5. https://main.mohfw.gov.in/newshighlights/national-policy-rare-diseases-2020

6. https://www.tribuneindia.com/news/archive/nation/india-s-per-capita-health-spending-dismal-rs-1-657-855027

7. https://www.livemint.com/news/india/india-s-economy-needs-big-dose-of-health-spending-11586365603651.html

Frustration

By Samantha Rzany

Sam is an independent artist, check out her Redbubble website for IBD stickers or you can message her on Instagram at Samantha.rzany

It’s easy to sit and write about the positive things I’ve learned from life with a chronic illness. I can talk all day long about my journey and what it’s been like for me. I have no problem sharing details about my symptoms and side effects and the physical symptoms of my disease. But what is hard is to be honest. I find it difficult to admit just how hard it is to live with ulcerative colitis. 

Anytime I share with someone that I have a chronic illness, they often apologize. I tend to quickly brush it off and say that it’s okay and then proceed to share the numerous opportunities I have gained from my illness. But it’s not okay. And I’m not okay. Living with IBD is hard. Every single day. It is frustrating. It is exhausting. And it’s just not fair. 

As a 22 year old, I want to be able to go to my 4-day-a-week-job and return back home each day without feeling so absolutely fatigued that all I can do is lay down in bed until I have to leave the next morning. I want to be able to enjoy my three day weekends and spend time with friends and have fun. And I’ve certainly tried to do that. And it starts my week off horribly. I start my work week with my energy below 0. 

I find the spoon theory to help me explain this really well. Each person starts out with a certain number of spoons. For a chronically ill person, the number of spoons is significantly less than the average person. Every single activity (going to work, hanging out with friends, running errands, etc.) takes some of those spoons away from you. And it is very hard to refill your spoons. So when I spend my weekend hanging out with friends and having fun, I start my work week out with no spoons. I very quickly go into the negative. Until my only option the following weekend is to sleep all day everyday. 

It’s an incredibly frustrating cycle. The absolute fatigue from doing very normal things is debilitating. And people just don’t understand. They see me as lazy or a typical “millennial” who just wants to get money and do no work. But it’s not the case. I want to work. I want to go back to grad school. I have so many ambitions for my life. But I am limited. 

It’s frustrating that the medication that is putting my IBD in remission causes so many issues. I find myself seeing specialist after specialist to fix issues that all stem from one medication and one condition. I have to see a neurologist for the migraines I get. I have to see a dermatologist for inflammation in my scalp and rashes on my hands. I have to see an optometrist for inflammation in my eyes. The list goes on and on. I often joke that I’m a 22 year old in a 60 year old’s body. But the sad thing is that it’s truly how I feel. And it scares me. If this is how I’m feeing at 22, what will I feel like when I’m older? When I am 60? 

I don’t like sharing what it’s really like living with IBD. I don’t want people to pity me. I don’t want to burden people with how hard it is. I don’t want my close friends and family to be scared or upset for me. So I often put on a brave face and share my story and hope to empower others to do the same. But life with a chronic illness, especially at 22 years old, is hard. It’s frustrating. It’s exhausting. It’s overwhelming. And many times, it is incredibly lonely. 

I’ve only had IBD for about a year and a half. So I’m pretty new to all of this still. I know there will be times when it gets harder and times where it gets easier. And I’m sure I’m not the only one feeing like this. The frustration, the exhaustion… it doesn’t just go away. But I have found that talking about it helps. Talking to my family and my close friends. Sharing with those in the IBD community what I’m feeling. Even though it doesn’t take away my disease, it makes me feel less alone. 

How Writing Helped Me Come to Terms with My Chronic Illness; How Finding Your Thing Can Help You Come to Terms with Yours

By Rachel Straining

As I’m sitting here now, I’m writing this in the notes app on my phone. 

I remember in high school when we had to write our college essays. Mine came to me at 12 o’clock on a random Tuesday night as I was trying to fall asleep. I couldn’t shut my brain off, which is usually a thing that tends to happen to me in the very moments when all I want to do is shut my brain off. I knew I’d have to get my thoughts out somehow, otherwise they’d consume me to the point of no sleep. I rolled over and grabbed my phone from my bedside table. I opened my notes and watched my fingers tap, tap, tap as my mind led the way. I wrote the first draft of my college essay that night on my phone. 

Now, as I sit here, writing this on the notes app on my phone, I can’t help but think about how finding a way to put my thoughts into words has changed my life and helped me come to terms with my chronic illness. 

When I was in 4th grade, I was diagnosed with generalized anxiety disorder. I had a hard time articulating my feelings. I would cry, a lot, but I wasn’t able to explain, or even understand, the “why” behind my tears. 

I was put into therapy and eventually handed a pen and paper. A narrow ruled notepad that didn’t feel so narrow at all. Rather, it felt like an open, honest gateway into a mind that at times felt all too confusing to make sense of. 

If I was upset about something, I would write it out. If I was upset at someone, I would write them a letter. Whether or not these words were ever shared was up to me, but the simple fact that writing gave me a way to process and work through my emotions was something I never had - something I wanted to hold onto forever. 

Then, when my world was flipped on its axis and I was diagnosed with Crohn’s disease, I stopped writing. I stopped talking about how I felt and I stopped writing about it. Even though every piece of me was breaking inside, I wanted to forget and pretend like I didn’t feel anything. Everything hurt. My heart ached and so did my body. I wasn’t numb at all, but I wanted so badly to be. So, in an effort to try and shut everything off and shut everything out, I put down my pen, threw my paper into the trash, and forced my heart to go cold to freeze time. 

I didn’t process the fact that I was chronically ill. I refused to. I studied or drank or exercised or ate away my emotions. I suppressed any kind of feeling, any kind of pain, any kind of grief, letting my emotions build up inside of me like a volatile eruption just waiting to happen and destroy everything within its wake. And then I flared my sophomore year of college and there was no way I could continue down the life path I was headed if I wanted to have a chance at living. 

I found an old notepad in one of my drawers that year and I watched the life before me change as I began to use my words again. I watched myself begin to open up again, no longer bottling up emotions that so desperately needed to be let out, no longer letting things eat me away inside until I felt so hollow that I became a shell of a person. I watched myself begin to connect with others by using words to which they could relate as a way to bridge the gap between loneliness and understanding that had once felt too scary to cross. In writing, not only did I find my true passion, but I also found my true acceptance. 

Especially when living with a chronic illness, one of my biggest pieces of advice is to find that thing you can turn to when you need it most. Something that will always be there for you, even when you try to push it away. It doesn’t have to be a person and it doesn’t have to be a tangible possession. Just something. For me, it’s sentences and paragraphs and poetry and prose. It’s putting my thoughts onto paper, or onto the notes app on my phone, and finding solace in the way writing helps me make sense of my truth when I find it too hard to verbally speak. 

Whether it’s the way a good song can make you feel heard or the way a good book can transport you to a different place, we all have something. We all have that one thing that both steadies and ignites our heart.  When you hold onto it, and when you harness your power through it, you’ll start to feel like you can finally take on the life that stands before you - one word or one note or one story at a time.  

Navigating Diet Culture with IBD

By Amy Weider

Growing up food was always a celebration for my family. Food was how and why we would come together and build traditions. We would eat lobsters for every New Years to signify good luck and we'd come together to break the claws and soak them in butter. I remember watching my mother make us a classic midwestern casserole on a weeknight and the Food Network was never not on in the background. Food has always been such a critical part of my life. It brings me joy and memories. So when I started getting sick around 9 years old my relationship with it was forced to change. I began to have severe stomach pains and was unable to hold any food down. The first instinct when someone is having intestinal issues is to always investigate diet. My loving mother quickly made the switch to all-organic everything, bland food, and no more sugary drinks. At 10, I very quickly had to change what I ate and go on intense diets. It was hard for me, as food is such an important part of my life and a means of joy. But nevertheless, my family supported me through it and we went through the motions. Gluten-free for a bit, dairy-free, liquid-based only, we tried it all. 

Alas, nothing worked. I was still, if not more, sick and constantly exhausted. Once the diets failed, I was given a colonoscopy and ultimately I was diagnosed with Crohn’s Disease. My Crohn's Disease was not fixed by a diet. In fact, no Inflammatory Bowel Disease (IBD)is caused or cured by food. Diet can help with inflammation or regulation of the disease, but diet also affects every IBD patient extremely differently. Most often, this is not how it’s portrayed and it’s hard for folks with IBD to carry the weight of the assumption that there is a one-size-fits-all cure. Ever since I first became sick, I have had people tell me constantly that if I ate a certain way I'd be fixed and that it is my fault I developed such nasty health problems. Hearing these things as a kid made me aware of diet culture very early on. 

Diet culture is the world we live in. It is everywhere. Diet culture can be defined as the patrolling of people’s weight under the guise of health, while it is really about control, shame, and reinforcing eurocentric skinny body standards and eating trends. Concrete examples of diet culture are folks labeling certain foods as “good” or “bad”, or the shaming of others for not eating the “right things.” Diet culture and the weight-loss marketplace is a $70 billion industry. There is no way of avoiding these harmful tactics of major companies marketing off of your body’s imperfections and longing to achieve the societal standard of a femme body. It becomes very difficult to balance the thin line between diet culture and a change in your nutrition for your health’s sake. Specific diets that are used to help manage IBD are often glamorized as the “new, hot trend that will make you drop ten pounds quickly!” There needs to be a greater understanding of how privileged it is to merely treat these diets as fads. They are often highly inaccessible, expensive, and fail for those who are just casually attempting them. But for others, for example those who have Celiac, this isn’t an option for them. There is so much nuance that is frequently overlooked when prescribing diets and there needs to be more attention given to diet vs. health and nutrition. The mask that is diet culture can very quickly take over one’s life.

When you Google “Crohn’s Disease” you cannot miss the slew of diet suggestions for anti-inflammatory foods or titles like “Gluten-free Fixed My Life!” Hearing people make statements like “you could cure that by eating ‘blank’,” has become a huge trigger for me. My relationship with food has had its rocky times, but it’s still a place I find deep comfort. Comments like these stem directly from diet culture and the invalidation of lived experiences. There is no right way to have Crohn’s Disease. Everyone’s life experiences differ greatly and the main lessons I’ve taken away from mine are to be open, ask questions, and not push assumptions onto others. Open a space for folks to guide a conversation about their dietary restrictions and needs if that’s what they want. NEVER suggest a new diet to an IBD patient unless you are their medical provider. Trust me, we have heard everything.

5 Things I Have Learned from Life with IBD

By Samantha Rzany

Living with diagnosed ulcerative colitis for about a year and a half now, I am realizing that I have learned quite a bit from this journey. While I often wish I did not have UC, I am grateful for the opportunities and growth it has provided for me. I do not believe that I would be who I am today without having to go through the struggles that stem from being chronically ill as a young adult. 

1. Your health is one of the most important things in your life.

   It is more important than grades, or accolades, or how many social outings you can go to each week. As a perfectionist who constantly strived to push myself to do my absolute best and be my absolute best, the concept of all of those things taking a back seat to health was really difficult for me. But when you are at your sickest – in pain and in and out of doctor’s offices and hospitals, you quickly learn to appreciate the days and weeks when you are healthy. And working to maintain that health becomes a higher priority. For me, I had to realize that other things were less important than feeling physically and mentally good. 

2. Don’t push yourself.

   Your body is already working double to do the everyday things that healthy individuals take for granted. Your body fights so hard to just get up and do normal day-to-day things. It has to work so much harder than a “normal” body to do “normal” activities. Oftentimes, you will feel fatigued after simple tasks. You might not be up for things that your friends are capable of. You might know you can’t eat certain things at places your friends may want to go. And it is hard to not want to push yourself to do these things in order to keep up. But you don’t have to push yourself. You don’t have to convince yourself you may be fine if you try this, even though the past 10 times you weren’t. Which brings us to the next lesson…

3. Learn how to say no.

   There will be times you can’t eat certain things or can’t do certain things. And that is perfectly okay. Good friends and family will understand that and not treat you any differently. But sacrificing yourself to please others is never necessary. You’ll have days when you are too tired or too sick to do certain things. And that is perfectly okay!! Certain friends or family members of yours might not understand. They might not accommodate you or the things you may need. But the people who love you and are kind and understanding will work to accommodate you however you need. They won’t be offended when you have to say no to things. Some might even try to find other activities or restaurants that you are up for! These are the people you want to keep around. But there is no shame in having to say no to people or activities. Saying no means you have enough self awareness and understanding to know what you can handle. 

4. Know your limits.

   You have to learn what you can and can’t do – both when you’re flaring and when you’re in remission. Know what you can eat, how often you can go out, and how much you can do every day. You will have your limits. And those may change every week or every few days. They certainly will change between when you’re healthy and when you’re sick. And it’s important to work to keep track of what those limits are. It may mean only going out once or twice a week and getting together with friends/family at your place other days. It may mean not being able to go to certain restaurants when you’re flaring because you can’t eat anything there. It might mean feeling up to go out and being an hour into it and feeling too tired or sick to keep going. All of that is perfectly fine! You just have to know what your body is capable of and not compare that to anyone else. 

   And most importantly…

5. Give yourself grace.

   There will be days you’ll get frustrated. You’ll be sad and angry. You’ll be hurt by how people respond and sometimes you might just want to feel normal again. But you have to learn how to give yourself grace. Your body is capable.  Even when you were at your sickest, you made it through. You are strong and brave. And you need to give yourself grace. When you have to say no to things or aren’t feeling up too what you used to be able to do, you have to give yourself some grace. Comparing yourself to others your age will never be beneficial. Instead, remind yourself of how strong you are and how much you have overcome. Allow yourself to put yourself first sometimes and make your health a priority. 

Hair Loss

By Rachel Straining

Hair loss was something I never expected at the age of 22 until I found myself staring in the mirror, crying at my reflection. 

I knew the stomach pain. I knew the sharp, stabbing aches. I knew the nausea. I knew the fatigue. I eventually even knew the PTSD. But I didn’t know about the hair loss. 

Telogen Effluvium, they called it. It took me a while to figure out how to spell it let alone understand it. Telogen Effluvium - the medical term for temporary hair loss that occurs after your body undergoes serious stress, shock, or trauma. The words stress, shock, and trauma barely begin to cover what my body went through almost a year and a half ago. 

When two of the worst flares I’ve ever experienced happened back to back, one after the other, I lost weight rapidly. I couldn’t eat. I couldn’t sleep. I could barely breathe. I could barely even make it up the stairs without holding on to the railing for dear life and support. 

Shortly after, that’s when my hair started to fall out like I’ve never seen it fall out before. In clumps. In the shower. In my hands as I held seemingly endless strands of hair that I never thought I’d lose. 

I have always struggled with feeling beautiful in my own skin and my own being. Truthfully, growing up, I had always placed an immense amount of importance on my appearance, and my long locks had always felt like a kind of comfort blanket. “Hey, at least I have good hair,” I would say as I picked every other inch of myself apart. Watching my brittle hair fall in my boney hands as I stood in the shower with hot water and tears streaming down my face felt like the final blow to my already withering self-worth. 

I wouldn’t put my hair up. I couldn’t. Not in a bun, not in a ponytail. No matter how hot outside it was or how humid it got. If I tried to, I would immediately break down at the sight of empty, bald patches of hair that were once so full. 

Hair loss is not something that many people, especially many young adults, talk about, but it’s something I’ve come to realize that many have experienced. It is an external, physical side effect that also comes with its own host of internal, mental battles. 

You can say it’s “superficial” and you can say hair “doesn’t matter,” but when your illness continues to distort your self-image and self-confidence time and time again in ways you never thought imaginable, it is hard. It is really hard. It is traumatizing. It is difficult to fully understand unless you’ve been through it. No feelings we endure are trivial, no battles are to be invalidated. 

As someone who has gone through it herself, I am here to tell you you are allowed to feel it all, and anyone who says otherwise can come talk to me. You are allowed to be angry and sad and upset. You are allowed to cry, you are allowed to mourn what you once had, but I also want you to know that I refuse to let you give up on yourself. 

In the moments when you’re standing in front of the mirror or standing in the shower, I know how much of a battle it can be to feel good about yourself, to feel like yourself, to feel like you are complete with bare patches revealing your skin. 

However -

In a society in which it has been so wrongly ingrained and instilled that part of one’s worth is to be found in one’s physical appearance, I want you to know that your worth is not found in the hair on your head or even the freckles on your face. Your worth is found in the way you make other people smile and in the light that you bring to this world simply just by being in it.  

And yes, yes your hair will grow back as you heal. And you will heal. And healing will be a roller coaster of emotions with both mental and physical twists and turns, but the bravest thing you can do along the ride is to embrace who you are inside at every step of the way. 

The bravest thing you can ever do is choose to accept yourself every time you feel as though you can’t. 

Advocating with Crohn’s

Life has a funny way of working out. It certainly doesn’t feel that way when you are diagnosed with a condition like Crohn’s disease, or going through a flare, when there seems to be very little to look forward to… but things can and do change.

Twelve years ago, I could never have imagined that I would be doing what I am doing right now. I was devastated when I was diagnosed with Crohn’s disease at the age of 14, which on top of my existing juvenile arthritis diagnosis, felt like another hurdle that I may not be able to overcome. Fast forward to 2020, and my outlook on life is very different, with those awful and challenging experiences fuelling everything that I do.

We’ve all heard the age-old advice of spending your time doing something you love. Growing up, I never realised that this would happen through patient advocacy – but it did. Even going back to the early 2010s, I had never heard of the term ‘patient advocacy’, and I had certainly not met any other advocates doing what I, and so many others now do. When I discovered it, there was no stopping me.

“If you do what you love, you’ll never work a day in your life.”

My patient advocacy journey began in 2012, when I was invited to become the first young person’s representative on a national clinical studies group for arthritis and other rheumatological conditions in the United Kingdom (UK). The invitation came from my former paediatric rheumatologist, who I met while attending a young person’s ‘meet and greet’ event at the hospital. At this point, I had been under the care of adults for around 12 months, so this was an opportunity for us to meet other young people in adults, while also being able to chat to those still under the care of the paediatric team. It’s hard to believe that this was only the second time that I had been in the presence of other young people with arthritis – the other time being in 2010, at the age of 16, when the hospital held an information day for young people. I had gone through the majority of my childhood without meeting another young person with arthritis or Crohn’s disease. It’s hard to believe it, but in the days when social media hadn’t really taken off (but when MSN Messenger was a thing), it was pretty difficult to be able to have a conversation with somebody else who ‘understood’. Having been presented with this new opportunity to help embed the voice of young people in research, I jumped at the opportunity to get involved.

I attended my first meeting in December 2012 in Manchester, down the road from where I live and where I was studying. I didn’t know what to expect, other than I had over 50 pages of material to digest ahead of the meeting. Thankfully, I was able to meet an experienced parent who was in a similar role to me on the group, but instead representing the patient and not-for-profit organisation voice. She was a huge source of help, inspiration and reassurance when I was sat in a room with over twenty of the most experienced, talented and ‘famous’ healthcare professionals and researchers in paediatric rheumatology from across the UK. While they were all lovely and made me very welcome, I found the experience totally overwhelming. I struggled to ‘understand’ what my role was, and I really didn’t appreciate the value of my experience, thoughts and ideas – which are the very insights needed to make research and care better for other people, like me.

As the years passed by, I met more and more researchers, healthcare professionals, and other individuals, who invited me to join different meetings, projects and activities. I was genuinely excited by the opportunities presented, and the realisation that I could help to make a meaningful difference because of my experience of living with chronic conditions since childhood. Looking back, this phase of my life was the one where I felt I ‘moved’ to that final phase of accepting my conditions, looking beyond the limitations and realising my value. It’s where I evolved into a strong, able and confident advocate for myself, and others, in every possible situation.

The majority of my patient advocacy was and continues to be within the world of rheumatology. I feel as though I have an allegiance with rheumatology – it’s where it all began, and I’ve come full circle if you wish! I also expanded my reach to chronic, long-term conditions more broadly, particularly focussing on the voice of children and young people, with a variety of different organisations and projects. The one area I felt I would like to ‘do more’ in was in inflammatory bowel diseases (IBD). This began with contributing to different articles and news pieces about IBD, before I branched out to a few different opportunities where I have been able to share my experience and help shape research and other activities for the community. One example was as part of an Immunology global community advisory board for a pharmaceutical company wanting to make a positive change to how they engage and involve the patient community. More recently, another new avenue identified was the CCYAN 2020 fellowship, which has been a wonderful experience.

People often ask ‘how’ I get involved in such advocacy work, and the answer is always because of ‘connections’. People I have met – either at conferences, other meetings, through fellow patient advocates, through healthcare professionals, and through social media, believe it or not. Getting yourself known is really important, and there are so many ways to do that. Platforms like WEGO Health (https://www.wegohealth.com/), Savvy Cooperative (https://www.savvy.coop) and of course CCYAN and the Health Advocacy Summit (https://www.healthadvocacysummit.org) are fantastic places to start, regardless of ‘where’ you are on your advocacy journey. The beauty of advocacy is that you can do as much or as little as you want. For some, advocacy is not for them – and that’s absolutely fine. For others, like me, advocacy is a part of daily life, where you quite literally live and breathe it – which is incredible. There really is no right or wrong. If you want to help and change things, then you should. There are plenty of people and organisations out there who can help you on your way too. You have your advocacy veterans, you have your advocacy newbies, and everyone in-between – each with a wealth of information, experience and talents to share. I can guarantee you that you will learn something from everyone you meet – I know I have, and that is often the best part of the job… meeting new people, constantly learning, and forging lifelong friendships, often out of pain and heartache. There’s something particularly beautiful and poignant about that.

As I look back, on what has now been eight years in patient advocacy, I feel incredibly blessed to have had the opportunities that I have had. It certainly hasn’t been ‘easy’, especially on top of living with chronic conditions, studying, caring for relatives, and also trying to enjoy some downtime – but it has all been worth it. For every person living with a condition who has felt less isolated… for every researcher who has changed the way they think because of something I have said… for every policy decision which has been informed by the insights I have shared… that is what matters. Everything else is a bonus. A very special, and emotional bonus came in 2019, when I was informed that I had been nominated, and selected as a finalist in the Shaw Trust Disability Power 100 2019 - the list of 100 of the UK’s most influential people with a disability or impairment. In October 2019, I was invited down to London for a reception at the House of Lords in Westminster for the launch of the publication, which was such an incredible honour. During the event, I was reminded of how fortunate I have been to be able to do what I do, when so many others are unable to do so – and that is exactly why I advocate. I advocate for those with no voice. I advocate for those who are trying to find their voice. I advocate for those who don’t have the strength or energy to fight right now. I advocate for those with a voice, to amplify and support it. Never, ever forget that your voice matters.

If I could give my younger, less experienced self some advice, here’s what I would say:

1. Your experience is invaluable. You have been through some difficult times, but you’ve made it. You have so much to give, and so much good to do in the world because of what you have been through.

2. Don’t be afraid of speaking up, speaking out, and challenging others. It takes some confidence to be able to articulate your thoughts and present them, especially when what you have to say goes against the norm. If you’re thinking and feeling it, the chances are that you aren’t alone. Be brave and get your message out there.  

3. Embrace unknowns, challenges and critique. You aren’t expected to know everything. If you aren’t sure, say so, and then use that as an opportunity to learn and grow. If you are challenged about something that you say, it can feel as though it’s a personal attack, but in most cases, it’s not. It can feel disheartening to hear others disagree with what you think, and it can be upsetting if what you say is not embraced. Feel free to have your moment of anger, but then pick yourself up and move on – you’ve got this.

4. You don’t have to say yes to everything. Far too often, I have been a ‘yes’ person, succumbing to often unrealistic requests for me to contribute to different tasks. I’ve done this because I wanted to help and make a difference; however, it has sometimes impacted on my physical and mental health, as well as my time. You are able to say no and should exercise your rights to do so. The people you are working with should understand, and if they don’t, you may wish to re-evaluate whether they are the right people to be working with.

5. You won’t necessarily get on with everybody you meet. This is also another difficult one for me. I am a natural people pleaser, wanting to ‘get on’ with everyone. However, just like in reality, we aren’t compatible with every other human being – and that’s okay! There may be those where relations are kept purely professional, while friendships may be forged with other advocates you meet That’s part of life. Don’t feel ashamed or worried if those feelings arise.

6. There is space in the advocacy world for you. If you see other patient advocates and organisations occupying the space and think that you shouldn’t be encroaching on their territory – then get those ideas out of your head! You are just as entitled to be involved as everybody else, and don’t let the minority stop you from showing up. You are likely to come across certain figures who may believe that they are the only ones who should be active as patient advocates, but trust me, they’re in the wrong. The whole ethos of patient advocacy is to promote and protect the interests of patients and their families. As far as I am concerned, the more advocates we have, the better! Position yourself within communities who stand together to lift each other up. That’s where you want to be!

Crohn’s in College: Perspectives from a Former D1 Student Athlete

By Rachael Whittemore

Erin and I met in a serendipitous way - I was flaring and having a rough day at work, so I had to switch places with someone at work so I could sit instead of running around in surgical dermatology. She had come in for a triage appointment. We were talking and I made a joke about my stomach and she replied - “oh, I totally understand that, I have Crohn’s.” It couldn’t have been more perfect. We laughed about our IBD and bonded over our love for UNC. I also found out she would be starting a job at the clinic soon! She became a part of our “PA pod” and a beautiful friendship began. Erin is someone who gives her all in everything and is a light to anyone she meets. Like everyone with IBD, her story is unique and she has found a way to truly thrive in spite of it. She graciously offered to answer some questions about life and her journey with Crohn’s disease.

We both share a love for missions and travel!

Tell us a little bit about yourself. What are you up to right now and what plans do you have planned for the next year? 

Raised on a farm in rural North Carolina, I graduated from my dream university (UNC-Chapel Hill) back in 2017 and have stayed in this lovely city ever since. After graduating, I traveled some and then landed this sweet medical assistant job where I became Rachael’s trainee. I am still gaining experience hours in the clinic, with plans to apply to Physician Assistant programs next summer. Along with working full-time, I have been pursuing a second degree in Public Health from North Carolina Central University. My hope is to join public health education and community outreach into the way I practice as a Physician Assistant one day. 

Working as MAs together at Central Dermatology.

What was it like being in college and starting to experience IBD symptoms during a time that is often deemed “some of the best memories you will make?” How was this affected by you playing a sport? 

Overall, my first year of college was pretty miserable. As a first year student athlete, having my first true flare within the first month of training was about the worst timing it could’ve been. I had experienced some fatigue and abdominal pain throughout my senior year of high school but, with the stress of starting college courses and the physical toll softball was taking on my body, the pain and exhaustion was consuming. I had no idea what was going on with my body and why it seemed to be betraying me. I couldn’t perform athletically the way I had before and no one believed me when I tried to explain how I was feeling. In their defense, I didn’t know how to advocate for myself since I didn’t understand what was happening. Nevertheless, I still felt isolated from my teammates, coaches and friends. It looked like I was some freshman who came in lazy, poorly prepared physically, and mentally weak. In reality though, I was struggling to get out of bed in the mornings for weights. I slept on any bench I could find in between class (even if it was for only 5 minutes). My body constantly ached and I’d be back in the weightroom or on the field before I ever felt any recovery from the last training. I’d clutch my stomach at night from the pain. The majority of the time, I felt awful physically and, in turn, felt awful about feeling so weak and letting my team down. It was a difficult time for me. 

How long did it take for you to get an official diagnosis? Was it difficult? Did you have any issues with providers not taking you seriously?

From my first symptoms back in high school to the beginning of sophomore year at UNC, it took over two years and five different doctors to diagnose my Crohn’s disease. This journey was definitely one riddled with frustration and hopelessness at first. I knew my body felt off but after having three different doctors tell me things like, “It’s just a stomach ache, suck it up,” and “Well, if your primary care provider doesn’t think it’s anything, I don’t either,” I decided that I must be crazy and I just had to deal with the pain. When the flare hit me hard at UNC, I went to another doctor to reevaluate for a fourth opinion. After a lot of advocating, he finally tested some labs through blood work. The results showed that I had severe iron-deficiency anemia but the cause wasn’t looked into any further. I remember offering up that maybe it was related to the significant, recurring abdominal pain I’d been experiencing but that was quickly brushed off. My diet was adjusted to help increase my iron intake, but I felt worse as the diet consisted of all the foods that (I now know) cause my flares. It wasn’t until after I had to medically retire from the softball team at the end of my freshman year that I went to see my fifth and final provider. She sat with me, listened to me, and fought with me to find an answer. Within about a month or so, I finally had my diagnosis. The diagnosis proved to others that my struggle was real, but more importantly, it finally gave me a chance at finding some peace. 

What advice would you give other young adults with IBD who may have been seriously playing sports prior to their diagnosis?

I would love to encourage my fellow IBD athletes that this diagnosis doesn’t have to mean an end to your athletic career. I was blessed in that, by my senior year, my Crohn’s was in remission. I laced up my cleats and wore that Carolina jersey proudly for a final season. Was my experience the same as my teammates? No, my conditioning had modifications and some days I had to listen to my body and rest. But who cares? There’s no shame in that. In fact, it’s even more incredible that we’ve been provided the opportunity to compete and perform at that level despite our adversities. I found immeasurably more joy in my sport that final season and realized how much I had taken it for granted before. No matter how much we pour ourselves into our sports, we are not entitled to perfect batting average, fielding percentage, or even health. Sometimes, we get to be creative and find ways to integrate back into our sport or even just an active lifestyle. If you are able to continue athletics, I highly recommend having an honest conversation with your coaches and teammates about expectations and trust. Don’t be afraid to advocate for yourself and your health. If you aren’t able to continue your athletic career, I grieve with you and that loss. I understand the identity crisis that ensues as soon as you are no longer an athlete, however, so much growth comes out of this season of life. I encourage you to shift your hope into something greater than a sport. 

What advice do you have for young adults who are trying to find their way after their diagnosis? 

First, I’d recommend taking some time to wrestle with the reality of the diagnosis and what this means for you personally. Lean hard into your community because having a support system is so crucial. It can be overwhelming in the beginning but trust me that things even out over time and you’ll start to adjust to your new normal. Once you get your bearings and start looking forward, don’t allow your IBD to define or limit you. There is so much more to you than your diagnosis. In a really twisted way, Crohn’s was potentially the best thing that could’ve happened to me. It caused me to really evaluate my life and my heart. It opened up my eyes to new passions and the desire to pursue them. 

After medically retiring from softball for my sophomore and junior year, I was able to study abroad in Scotland for a semester and backpack around Europe for eight weeks after. I became more involved with a campus sports ministry called Athletes In Action, making lifelong friends and growing deeper into my relationship with God. I began to merge my loves of traveling and Jesus together on mission trips abroad. I’ve even recently been on a medical mission trip back in February, which was especially memorable for me. My heart has never been so full. All of this is to say, there is so much life left to explore and experience in this world. It would be a shame to let IBD take that away from you.

On a recent mission trip in Belize - working as a dental assistant!

What advantages do you think living with Crohn’s disease gives you in the real world? Has any reflection changed your perspective on living with a chronic illness going forward?

My Crohn’s disease has given me a certain confidence and purpose for my career path. Before all of this, I wasn’t sure what I wanted to pursue professionally and now I am passionate about becoming a medical provider one day. Even as a medical assistant now, I have been able to relate to my patients on a deeper level when reviewing biologic injections and other medications. Being able to sit with a patient and provide information and counseling from personal experience really helps build trust. While my experience with the healthcare system wasn’t a positive one to start, I’ve since had providers that have made me feel heard and valued. I want to be able to care for others in such a personal and profound way like my medical team has for me. Even if you don’t want to go into the medical field, there are lessons from our experiences on how to treat others that apply to all aspects of life.

I am also grateful for the advantages of endurance and perseverance that I’ve gained. With IBD being a chronic disease and after seven years since my diagnosis, there have been a lot of opportunities to wallow in self-pity. Don’t get me wrong - sometimes there are still days where I’m frustrated with having Crohn’s - but overall there have been so many victories over it. Each time I’ve adjusted my treatment regimen, found yummy recipes in my diet or shared my testimony, I've experienced joy. Celebrate the little things and appreciate the magnitude of what we’ve overcome. Living a full and purposeful life with IBD is possible and I want to empower you to continue persevering to find that. Throughout this experience, I’ve been shaped into the woman I am today and it has provided me the capability to handle all that will come in the future.

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One Who Suffers

By Nikhil Jayswal

Disclaimer: The views presented in this article are entirely my own.

A couple of years ago, I stumbled upon the original definition of a patient - “one who suffers”. The word comes from the Latin word patiens, which is the present participle of the deponent verb, patior, which means “I am suffering.” 

This definition, for some reason, is stuck in my mind, and I can’t help but ponder over it in many different ways whenever I come across it. Everything that I have ever experienced while navigating the healthcare system, makes me realize that I’m a patient because I’m patient. My virtue is now my label. The very characteristic that can garner someone praise is now a label for an ill person. To me, this contrast feels poetic, ironic, and cruel, all at the same time. 

I tend to be very patient unless I’m in pain. I never knew though, that my patience, in essence, is my capacity for suffering. My patience has often been tested to the limits, by the healthcare system in my country. I can understand that the public healthcare system is not equipped to handle the volume of patients that it receives, which leads to delays and substandard care, but the private healthcare system has not been very kind to me either. The private healthcare system unfairly treats patients with weaker socio-economic backgrounds and highly favors the affluent ones. People with affluence and influence rarely respect any rules and often indulge in corrupt, immoral, and unethical practices to hijack the system and get the treatment that they want. This has often caused me much pain. I have struggled to find a hospital bed or a doctor on time, and I have been treated badly by the system because of my inability to afford the treatment I needed to stay alive.

It seems almost futile to me, to speak of these issues, because of a lack of support and the fact that people have accepted these issues. Breaking the rules to deny someone else the care that they might need more urgently is not a matter of concern for most people. In such an environment, only two kinds of people survive - the affluent or the patient. The word “patient”, hence, should be reserved for those who ultimately pay the price of a broken system, being abused further by egocentric people. This system has often made me and my mother weep as we struggled and oftentimes, begged for aid. Be it drugs, insurance, hospital admissions, diagnostics, or appointments, the entire ecosystem feels like one huge paywall. 

People struggling with similar conditions are competing against one another to get care. Instead of standing together as a community, we are competing with each other, and the game is of patience. How early can you come to queue up at the OPD (outpatient department) window? How many hours are you willing to wait to see the doctor? However, the ones who win are those who do not play this game and the only thing you can do as you watch them get ahead of you is feel sorry for yourself and be ... patient.

Every time I write a part of my story, I relive a lot of trauma, caused not only by my illness but also by the healthcare system. Aiming to be an advocate amidst such an environment seems to be a foolish undertaking. In this system, money, power, and influence are advocates. I was incredibly lucky to survive. There are some who are trying to do their jobs as rightly as possible in this atmosphere, and it is these people, to whom I owe my life. 

Privilege and patience have an inverse relationship. The more privilege you have, the less is the patience you can get away with. I have the privilege of education. I have the privilege of being able to obtain and absorb information on my own. I have the privilege of graduating from one of the best institutes in India. Without all these privileges, I would not be where I am today. These privileges though, are not of much use if you are not a person of importance, or a person of wealth, and are suffering from a severe form of some chronic illness. 

These days I stare a lot out of my house to see people taking a walk, some with their pets, kids playing on the street, etc. When I look at them, I feel the same hollowness in my heart that I felt a few years ago, when I looked out of the hospital windows, at the outside world. My home feels like a prison to me now. I cannot step out of my house because people are not wearing masks, even after the fact that three COVID cases have been detected in the neighborhood. The lockdown may be over for other people, but it continues for me. The reason is simple. Even though wearing a mask and social distancing rules are not laws, breaking these rules to deny someone else (in this case, the vulnerable population) the simple pleasure of walking outdoors is not a matter of concern for most people. They’re not patients. I am. I haven’t been able to follow-up with my doctor in six months. I’m buying my ostomy supplies at higher rates than usual. Why? Because I’m a patient, and thus it is my destiny to suffer. Thankfully, I am not in a flare, but many of my friends are, and they are unable to step outside to buy medicines. Why? Because they’re patients too.

Now anytime, someone tells me that I’m a patient man, the irony and cruelty of it dawns upon me. This word often rings and echoes around in my head, and it has been doing so much more these days as I feel trapped and helpless, and at the mercy of the non-patient population. Advocacy, currently in India, has many different dimensions, that are neither pretty nor easy. Similar to the ecosystem that thrives on the patience of the under-privileged, we need an ecosystem of advocates, working in different ways, that can help the actual patients get the care they require and deserve without having to suffer as much as they do currently.  

Until that happens, for me, and others like me, even though dictionaries define a patient differently now, the experience of being one still echoes, very loudly, the original definition - “one who suffers”.

Relaxing with Crohn’s

By Simon Stones

R&R… rest and relaxation – a concept I have long struggled to grasp, but one which I have learned to embrace, and enjoy over the last few months while being in lockdown.

Life in lockdown, because of COVID-19, has been a new and uncomfortable experience for many. Though for many people, like me, who have experienced isolation because of ill health, there has been a sense of familiarisation with what it’s like to be in isolation. Having your freedom taken away from you… being told what you can and cannot do… feeling cut-off from friends and family… worrying that your life is at risk. These are all experiences which so many with chronic conditions like inflammatory bowel disease (IBD) can understand, though in 2020, the wider population have had a glimpse of what that life is like, and how unpleasant and distressing it can be.

Having been unable to do so much because of ill health during my lifetime, it will come as no surprise that if I am well and able to do something, I certainly will do – even if I have to suffer the day after, because I overdid it on a ‘good’ day. I’m pretty sure that most people with chronic conditions have been there! We are told to overcome this pattern of activity by ‘pacing’. To some degree, I try to pace my life, but in reality, it’s not so easy! When you’re feeling unwell, you rest… when you’re feeling better, you try to cram as much in as possible. Life is so busy, and it’s difficult, especially after periods when you had no choice but to feel disengaged from the world, to not want to squeeze in as much as possible. After all, with conditions like IBD, you never quite know when the next flare up may happen. I have been entirely guilty of this – and hold my hands up! Over the last few years, my health has generally been okay. I have daily struggles, and have to manage pain, fatigue and other limitations, but I am generally able to function. This has meant that I’ve been working full time on my PhD, working part-time in a freelance capacity and volunteering tens and tens of hours per week, on top of caring for my late mum, housework and socialising. It’s safe to say that I was driving through life at 100 miles per hour, not necessarily realising the impact of trying to squeeze everything in.

I started to re-prioritise commitments in 2019 as I started to care for mum on a full-time basis during what would be her final few months. While caring for mum full-time, I was still trying to balance a full-time PhD, part-time freelance work, and volunteering – mostly because I didn’t want to let people down, and also because I struggled to say ‘no’. I decided enough was enough in July 2019, when I found myself sat up working in the middle of the night, every night. I felt totally drained. Despite loving what I do, there was no time needed to decide on my number one priority – mum. I suspended my PhD and stepped away temporarily from some voluntary work, keeping some freelance work ongoing to help me pay the bills. Sadly, mum passed away in November 2019, and I didn’t return to my PhD until February 2020, just as COVID-19 escalated. That’s when I really was forced to slow down. All of the conferences, meetings and events in my diary were cancelled, and from March 23rd, the United Kingdom went into ‘lockdown’. I was initially on the ‘shielding’ list and was told not to leave the house for a minimum of 12 weeks. As time went on, guidance from the British Society of Gastroenterology downgraded my level of risk to ‘high risk’, given that I was on biologics but not experiencing a flare, so technically I didn’t need to shield, but should try to do so where possible… which I did. 

“Slow down and enjoy every day. Life goes by way too fast.”

I decided that I would be staying at home, full stop. It was the right decision for my own health, my dad’s health (who lives with me), and others in the community. The hardest part of course was not seeing family and friends, but we’ve all been in the same boat. 

However, it was during the weeks and months that followed that I really slowed down. Surprisingly, lockdown enabled me to prioritise myself – something which I seldom do. I was now able to do things, just for me, without feeling guilty. It prompted me to stop, think, and remember that it’s not always a good idea to burn yourself out! During lockdown, I have learned to change my pace of life, and I have found surprising benefits on my physical and mental health. It has been nice to be more flexible each day. Don’t get me wrong, I do like to have some structure to the day, otherwise it’s very easy to get nothing done. However, it’s nice to be able to more or less shape my day around what I want to do. Although I have been working on writing up my PhD and doing other pieces of work, I have made more time for myself. Here’s a little flavour of some of those activities…

Yoga

I took up yoga a couple of years ago, but I never kept it up… until lockdown. Admittedly, my activity levels decreased quite a bit during lockdown, especially during the start when I didn’t even go outside for a walk. I felt as though I was seizing up, and so I decided to pick up from where I left off with yoga. I had the mat and the rest of the gear at home, so all I needed was an app. I came across the ‘Down Dog’ app, which was offering free access to all of its content during lockdown. I decided that I would try to do yoga for at least three mornings each week, though I found myself doing it every morning! It quickly became a way for me to ease myself into the day, stretch and loosen up my aching body, focus on my breathing, and ‘be’ here in the present. If you haven’t tried yoga, then I would seriously recommend it; though you may prefer pilates, or something completely different. The most important point is to find something you enjoy and have a go. I’ve noticed the benefits on both my physical and mental well-being, especially over time.

Gardening

I never thought that gardening would be on my list of hobbies that I would enjoy, but there we have it – you can even surprise yourself! We’ve had some beautiful weather during lockdown, and I was fed up of my lacklustre garden, so off I went to transform it! The fences and sheds have been painted, the lawns have been cut, borders and edges have been added, and there are flowers left, right and centre! What a difference. There’s definitely a sense of pride when you see a transformation happen before your eyes – especially one which you have influenced. It was also just a joy to be outdoors, in the fresh air, after being cooked up inside the house. I found it relaxing to be amongst nature – as well as topping up my vitamin D!

Getting outdoors

Once I felt it was safe to do so, I took myself to one of my favourite places, just 15 minutes away from where I live. The views are spectacular over my hometown of Bolton, Manchester and beyond. It’s all so quiet and peaceful – which is just what you need amidst the chaos and misery felt during this horrendous crisis. I realise that I’m incredibly lucky to live in a beautiful part of the country like this – something which others don’t have, though I hope others can find a little haven – whether that be the garden, a local park, or balcony. 

Getting crafty

I used to love arts and crafts as a child, so taking this up again was nostalgic, and resurfaced lots of lovely memories of times spent with mum. My favourite card shop closed during the lockdown, so I decided to make my own! I dug out my craft box of ‘bits and bobs’, searched for some ideas online, and had a go at making a few different cards. As you can see, they were simple but effective (or at least I thought so!) I also really enjoyed just doing something, which required my focus and attention, but distracted me completely for everything else going on around me. After all, isn’t that the whole point!?

Totally chilling out

I’m not going to make out that I’ve been super productive throughout lockdown, because I really haven’t! For the first time in ages, I’ve read for pleasure – instead of reading textbooks and research articles. I’ve also gone through lots of films and TV programmes – who doesn’t love a good box set? Having total chill out days, or ‘duvet days’ as I like to call them, are the perfect tonic when you don’t have the impetus to do anything productive.

Sometimes, it takes certain situations to make us re-think the way in which we live, and I know the last twelve months have certainly prompted that for me. I am looking forward to spending time with loved ones, and eventually getting back to doing what I love to do, when it is safe and sensible to do so; but until then, I will carry on as I am doing. I will, however, be trying to continue a slower, more paced way of life, making sure it is filled with the people, experiences and opportunities that I love the most. I hope you can do the same too.

How to Support Your Friends with IBD

By Amy Weider

Growing up with Crohn’s Disease you tend to miss a lot of the action: birthday parties, hanging out with friends, and even going to school. It was either I was sick or stuck at another pediatric GI appointment that was 2 hours from my house. And to be honest, for most of my childhood I didn't really have friends. Because of my Crohns, anxiety, and depression, all of which were connected, maintaining friendships was not something I could do. The beginning of high school was just as rough and I lost a lot of friends over my unhealthy coping mechanisms for my depression and, while painful, it taught me a lot. Around my junior year of high school I got the help I needed and my Crohns began to go into remission. I was able to find friends and learn just what it means to have them. I have always been a bit of a weirdo and to find a solid pack of reliable folks that embraced me for my unapologetic behavior and I theirs was a lot more important than I had realized. My now chosen family (LGBTQ way of saying best friends) from college met me when my Crohns was very stable and I had to explain my disease to them. From this, I put together a few ways I found was a good way for them to show me their support  and that made me feel their love and commitment. 

1. Do your research!! 

When a friend opens up to you about their experience it is smart to do a little more investigating to have a medical understanding of the disease. Read some CCYAN articles or follow content creators who have IBD. Also, allowing for space for your friends to open up about their experience with it and understand no two persons have the same lived experience or symptoms. 

2. Be flexible 

IBD can be VERY unpredictable so if you are one of those friends who shame folks for needing to cancel plans or change them (or shame folks in general) reconsider why you do this! A friend’s health, mental or physical, should be your first priority! Be flexible and allow for change.

3. Think about where the group is going to eat before hand

Simple things like this can really make a difference in a friends restaurant experience a lot easier. Ask your friends their dietary restrictions and do not assume that someone who has IBD also has dietary restrictions. Dietary restrictions can really make folks feel like a burden so be transparent and pick a spot for everyone!

4. Support them on good and bad days

It can be rough some days and not pretty. If you haven’t heard from a friend with IBD in a while, reach out. Flares can cause a lack of energy but that does not mean we don’t still need love and community! 

5. Make room for correction and connection

Learning about IBD can be complex and everyone with it has very different experiences so create room for feedback and empathy if you say something wrong or hurtful. Allow for a bonding experience when someone shares their experience with you and love them more for it! I genuinely love when people ask me about my IBD and that allows me to feel whole.

IBD in the time of COVID-19

By Rachael Whittemore

Since COVID-19 has preoccupied much of 2020 and is likely here to stay, we continue to try to do our part in mitigating its spread and keep ourselves healthy at the same time. Being part of a “high risk group” is scary, regardless of whether or not we are on immunosuppressant medication. We’re also trying to continue work, school or salvage some of our normal routine before social distancing and wearing masks in public became the new normal. I thought I would share part of my experience during the pandemic - back in April, in the midst of trying to do everything right, take care of myself, and be responsible, I found out that I’d had multiple exposures to someone who tested positive for COVID-19.

My heart sank a little bit and I became much more aware of the tiniest changes in how I felt. Was the tightness in my chest a sign of COVID-19 working its way into my lungs or just anxiety spiking? Was my terrible nasal congestion just worsening allergies with springtime in bloom or a sign of something more? You’ve probably seen plenty of funny memes circulating online that poke fun at moments when we need to sneeze or cough one time for something and then people within earshot of you give you death stares. They’re pretty funny, but when you know there’s a chance you could be infected or become infected, it hits you a little bit differently.

I was contacted by Virginia’s Department of Health and informed to stay where I was and self-isolate for 14 days. I had to take my temperature twice daily and record any symptoms on an online form. If I developed worrying symptoms, I had a number to call to determine if I qualified for testing. I was with my boyfriend, who had the same exposures I had, so it made me feel a little better; however, we were advised to largely avoid sharing spaces and each other as much as possible. It’s weird trying to keep distance from someone you’re staying with. What if your day has been rough and you just want a hug? In the time of COVID-19 isolation, you can’t do that. Being deprived of the comfort and connection we share with family members, friends and significant others is unsettling, especially for me. I’m a hugger, and I echo the sentiment that I won’t take another hug for granted once we get this thing under control.

So what did I do to prepare myself in case I got sick? I poured time into reading evidence-based resources about COVID-19. What we knew, what we didn’t. I was part of a Facebook group of medical providers from across the country that sought to share studies, experience, innovations and anecdotal evidence gained from treating COVID-19 patients. I looked at studies coming from elsewhere in the world about what treatments, if any, showed promise. A small part of me, thanks to my interests in medicine and public health, was wholly invested in how everything was unfolding. But most of me was trying to be as proactive as possible to keep my immune system up, avoid a flare and to stay above the rising waters of anxiety and dread in my mind.

I hydrated better than I had in weeks. I started taking a supplement with high dose Vitamin C and zinc every day in addition to my normal meds. I cooked (mostly) healthy meals and prioritized my diet and medication regimen so I could avoid any flares in case I got sick. I tried to prioritize sleep, but this was hard for me without my usual busy schedule and ability to run outside to have me feeling sleepy by the end of the day. I took Benadryl and, on my worst nights, one of my anti-anxiety medications that I usually save for days when I feel really out of control. Although I felt guilty about it, I tried to be gentle with myself and search for ways to set up a better sleep routine.

Fast forward a week: we were doing well and decided to go for a car ride since the weather was sunny and beautiful. We drove out on one my favorite country roads and marveled at the blossoming farms and apple orchards with the windows down. For some reason, I had started to feel nauseous and sweaty, sort of like when you might pass out. I don’t really get carsick, I thought. It didn’t smell the greatest since farmers were planting, but I usually didn’t react to bad smells either. We turned around, my boyfriend teasing me about being carsick but soon realizing I truly felt terrible. I laid down at home and hoped this “episode” would pass, yet I didn’t feel any better. For the next several days, I had waves of nausea, diarrhea, little appetite, dizzy episodes, chills, photophobia and some pretty intense migraine-type headaches. No to mention fatigue that prompted me to call for possible testing. I hadn’t had any fevers but knew something wasn’t right. My ulcerative colitis (UC) flares were never like this – I’d never had “dizzy spells” or felt so off. Even when my UC tired me out, I rarely would spend hours on the couch on a heating pad in one position, content to do nothing.

It was decided that I did need testing due to my symptoms and positive exposure. I felt lucky in this regard, because I know it hasn’t been easy for some in the US to get tested. Most are instructed to self-isolate and monitor symptoms and only seek treatment if they’re having trouble breathing. I also had had little to no respiratory symptoms. My nasal congestion had been worse, but I didn’t think much of it since my allergies were bad this time of year anyway. I had attributed some chest tightness to anxiety more than anything else. As I had been closely following developments at that time, I learned that COVID-19 could present with nausea, vomiting, diarrhea, loss of smell/taste, headaches, severe fatigue and other symptoms (1). Did I have COVID-19? It certainly seemed like a high possibility. My boyfriend, thankfully, was fine. I went to get tested at a drive-thru site nearby. After I got the not-so-fun, but necessary, long swab inserted into my nose and a sample taken from my nasopharynx, I was told to head home and to continue to self-isolate. I would have my results in 7-10 days.

How you get tested. Not fun!

A couple of days later, I finally had some appetite and felt like maybe it was a day I could get off the couch a little more. I got a call from my primary care provider: I was negative! I have to admit, I was relieved, surprised and also a little skeptical at the same time. As you may have heard, the testing methodology we have is not perfect and appears to have higher than desired false negative rates that can be attributed to various causes (1,2). RT-PCR (more about that here) may be the best widely-available testing we have, but many clinicians are relying on testing along with the clinical picture of the patient in front of them to determine how to proceed. Because of this, I acted like I had the virus, continuing to wear a mask once I completed quarantine and was allowed to go out (this was before mandatory masking inside was required in Virginia and North Carolina). I went out earlier or later, kept my distance from others and thoroughly washed my hands several times daily.

Thankfully, after 4 to 5 days, I finally started feeling like myself again. I felt like cooking and eating more than soup and applesauce. I wasn’t exhausted after taking a walk to the mailbox and back (with no one else around, of course). I still had some lingering loose stools for several days, but that finally improved too. I felt lucky that I didn’t flare on top of being sick, but made sure to be careful and ease back into my regular diet. I still worry about the possibility that my test could have been a false negative and I unknowingly infected someone else. Whatever I had, though, I made it through. Being sick during a global pandemic is hard. Trying to digest changing news and guidelines every week is hard. Hearing about exponentially rising cases and deaths is scary. Realizing that our world will never be the same after this is weird and scary.

Though I’ve been working through anxious thoughts during this time, I took time to slow down and be thankful. I wasn’t that sick. I had family and friends checking up on me. One of our friends brought us groceries. My boyfriend told me funny stories outside the bathroom while I was trying not to have diarrhea and throw up everywhere at the same time. I also was reminded to give my body time to heal. I’m used to being busy and balancing multiple things in my life at any given time. I have my normal life I’m used to living, even with the ups and downs of UC. I, like many others, probably don’t pause enough during the day to take a deep breath and remind myself of what I should truly be thankful for. If strict self-isolation has taught me one thing, it’s to stop and check in with yourself and on those you care about. While acknowledging that we are trying to navigate the storm that is a global pandemic, celebrate the little victories, even if you have to do it virtually.

IBD Resources in the time of COVID-19 - as always, discuss any questions with your GI provider*: 

COVID-19 (Coronavirus): What IBD Patients Should Know

Coping with the stress and anxiety of coronavirus

How to Treat IBD Patients during the Pandemic

Sleep Guidelines During the COVID-19 Pandemic

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Now, enjoy a few more COVID-19 memes that helped me laugh a little:

My IBD Life: Some College Experiences

By Nikhil Jayswal

Hey everyone! I hope everyone is well and safe.

I am currently a graduate research student in the Department of Aerospace Engineering at the Indian Institute of Science in Bangalore, India. I got my undergraduate degree in Mechanical Engineering from the Delhi College of Engineering in Delhi, India. Both of these institutes are among India’s best of the best, and I worked hard to get into these institutions. The concept of empathy though can be alien to even the best minds, as I learned through multiple unpleasant experiences. 

I was diagnosed in 2013, at the beginning of my seventh semester. I could not go to college for 2 months and I missed my mid-semester exams. After 2 months and still not fully recovered, I stepped into my first lecture of the semester. The moment I entered the class, the professor inquired about me. I told him that I got sick and could not come to college. I was standing at the door telling him my tale, and in return, he advised me to drop the semester. I did not feel good about that. I told him that I had submitted a medical certificate detailing my condition, but he told me (rightly) that a medical certificate can be submitted to compensate for a maximum of one month of absence only, as per university policy. I had no words to say to him. I did not want to drop the semester. I knew I could still catch up, but I did not hear any encouraging words. In the end, he did let me attend his class reluctantly. That week I got to know that a classmate of mine had also missed the midterm exams because of some acute illness. I was told that his father met the head of the department and that he was consequently having oral exams to compensate for his missed evaluation. My father, unfortunately, could not come to meet the HOD, but I assumed that since I had submitted the medical certificate and since my illness was a severe one, I would be extended the same courtesy. I wrote an application and submitted it to the department for consideration. I never got to meet the HOD and I was sent with my application to the office that dealt with examinations. I gave my application to a person in that office and verbally told him about my condition and that I had missed my exams. I still remember the derogatory tone in which he replied to me - “What do you want from us?” I told him that I wanted make-up exams in some form so I did not lose out on marks that I could have gotten had I not fallen sick (which was written in my application). My application was thrown among a pile of papers and I was sent away. I never heard from anyone again and I never asked anyone for anything again. I gave my semester finals and did as much I could. I had a score of 82% in my sixth semester and that semester I scored 63%. It hurt back then, it hurts now and it’ll hurt me in the future too. I worked very hard in my final semester and scored 85% which enabled me to get a First Class with Distinction degree in the end, but it still hurts. I’m glad I was diagnosed late in the course of my study. If it had been any sooner, I probably would have graduated with a second class degree. 

Now, I don’t understand why I was not accommodated, when all it took for another student was a meeting between his father and the HOD. I submitted an application and the required certificates. I went through the proper channels. Yet, I had to suffer. The sad thing is there is no official policy to help students in such scenarios. Parents of students with “strong” backgrounds have the confidence to come and meet the concerned officials and they are accommodated, but it’s not the same for a student with a “weak” background. This was not the first time I had experienced something like this. Students are made to run from office to office because of a lack of policies to handle uncommon scenarios. Socio-economic background plays an indirect but major role here. As income inequality widens, not many students with underprivileged backgrounds can afford quality education, even at the primary levels, which leads to under-representation at higher levels of education. The stigma attached to illness has a similar effect. A lack of accommodations for students with chronic illnesses discourages them and can often be detrimental to their mental health. It can also lead to students pushing themselves too hard to keep up with healthy students, which can lead to flare-ups and deterioration of their health condition.

Let’s fast forward a few years now. In 2019, I qualified for admission into graduate programs in both the schools I had applied to. One of them was the Indian Institute of Technology in Delhi (IIT-D) and the other was the Indian Institute of Science in Bangalore (IISc). Delhi is my home city. I get my treatment and medical supplies from the All India Institute of Medical Sciences in Delhi (AIIMS). My entire medical support system is here. Bangalore was an unknown city. I would have to set up a system of care from the ground up, but IISc is also the best institute for research. However, if I wanted to join any institute, first and foremost I would have to be deemed “fit” for graduate studies by the medical personnel at the institute. This was a bummer. I did not know that a medical fitness certificate would be required to pursue graduate studies. After all, the very reason I applied to grad school was that I would not be limited by any medical requirements that prevented me from getting a job suited to my qualification. I went to IIT-D with a colleague from work who studied in the department I had applied to and met the HOD. The crux of the meeting was that if I could get a fitness certificate from my doctors at AIIMS, I would probably be cleared by the institute medical staff for study because AIIMS is the best hospital in our country. I figured the same would work for IISc too. My doctors at AIIMS were delighted to know about my admission offers and they gave me the required fitness certificate, but they did express concern on the probability of its acceptance by the institute-appointed doctors. They also told me that in case of any issues, I should fight for a fair evaluation by a qualified gastroenterologist who would very likely support me because my GI at AIIMS is a renowned doctor. I can’t ever express enough gratitude to my doctors for supporting me in every possible way. With the issues of fitness dealt with, I had to now find out if I could get a private room with a personal toilet. I’ve never used a public toilet and I could not use the common hostel toilets. One of my brother’s friends had been provided such accommodation for him and his mother at IIT-D. So I didn’t inquire about it. For IISc, I emailed the concerned hostel authorities explaining to them my situation and asked them if I could be provided such accommodation. They assured me that I’d be provided the required accommodation. This assurance gave me enough courage to move out of Delhi and accept the admission offer from IISc. 

Things however did not go right when I arrived at IISc. I was assigned a room shared between 3 people. I was heart-broken and booked a hotel room for a few days until I got the proper accommodation. My request was not received very well though. Nobody was willing to listen to me and understand my situation and I was being sent from one office to another. I gave up after 3 days, and I remember calling my mom and telling her in tears that I don’t want to study and I’d be coming back. The next day I went to the Dean to try one last time, and while he acknowledged that he could not help me, he connected me with the hostel warden who was kind and patient and listened to my woes and directed the authorities to help me. It was only then that I was listened to, and I was assigned a room with an attached toilet, rather unhappily by the person in charge. I was given a room that had not been occupied for a long time. Its balcony is painted with bird poop and it is the only room in the seven-floor hostel with such a balcony. The toilet flush doesn’t work and I have no hot water. I didn’t protest though. I shifted to that room. It’s a filthy room, but I have no other option. The room next to the one assigned to me is similar. A few months after my admission, a completely healthy student was assigned that room, and it is completely functional. I wonder why I was assigned a dirty, non-functional room when better accommodation was available. I was also told that such rooms are assigned to physically handicapped students only, yet I saw a perfectly healthy student get the room. 

Such events hurt and sting. The sad thing is I can’t say anything. It feels like I have no rights and I’m completely at the mercy of the administration. I cannot advocate for myself and there is no forum for me to discuss my issues. I have made myself content with everything and I focus on my studies. I do not discuss my condition with most of my professors or classmates. I do not go to classes and have very few friends. I had presumed that the best minds of the country would respond with kindness towards me, but I was wrong. I do not ask for any accommodations for exams. I keep myself starved before exams to eliminate any possible mishaps during exams. I am happy at good grades and silently accept bad grades, even though I know they were bad because I give exams in a fatigued and starved state. I have been giving exams and interviews while starved ever since I became incontinent and experienced chronic pain. There is no consideration for students with such conditions for public exams. I have always been evaluated as a normal healthy student, which is unfair and unjust, but there is no other way. If I want a degree, I have to adapt to the current system which is inflexible and inconsiderate.

Let’s discuss finances now. I can’t work while going to grad school as per the law, and I get a government stipend of INR 12400 (USD 165) every month, 80% of which is spent on ostomy supplies and my meds. The remaining 20% is in no way enough to support my other expenses. I also paid the tuition and hostel room fees with credit cards, and hence, I have a significant amount of debt. So I work illegally, during the night, which affects my academic performance and also leads to extra fatigue because of which I skip classes to sleep. The funny thing is when I had visited the health center at IISc to get the fitness certificate, I was asked to explain my condition, both my IBD and my ostomy (clearly the doctors did not understand my illness) and even after all that, I was told to not use my illness as an excuse to skip classes. Coming back to finances, I wrote an email to some authorities inquiring if there was any possibility of financial aid for me. I was sent to the same doctors who did not understand my condition for evaluation of my needs. They claimed that I was demanding money and that my ostomy supplies (which are my lifeline) were “consumables” which could not be reimbursed for. I was told that I’m arguing and that I should submit an application and a decision would be taken after the application was reviewed by a committee (that rarely met as per another doctor from the health center). I did not apply. I simply emailed the authorities that I did not need any help and that I would find a way to make it on my own. I told them about how I was not happy by the way the institute medical staff treated me. I was then contacted by one of the Deans who was kind and assured me that I would be helped. My file went around from one person to another until it finally reached the Director who sent it back to the medical officers at the institute health center. A one-time lump-sum aid was recommended. The aid amount covers my medical expenses for a semester only. Again, I had to quietly accept whatever “aid” I was getting. But here’s the funny part. When I went to receive my aid, I got to know that nobody knew where my file was. The Director’s Office claimed that it was sent to the Finance Office but the staff there cannot find it. It has been 9 months since I had written that first email, and I’m still running from office to office to get this relief amount. The institute spent crores of money on a logo that was eventually rejected by the students and thousands of ID cards had to be printed twice. But the “Student Medical Relief Fund” does not have enough money to support a student with a chronic illness and an ostomy for a year. 

I want to say a lot more, but then I think, how does it matter? I might personally feel a bit better, but what does it accomplish? Are systems going to change? Is anybody listening? I feel that until and unless we create an inclusive environment where students and children from all kinds of backgrounds can get to know each other, things will never change. The collective voices of people who are suffering are not enough. Things will change only when the general population and society support advocacy initiatives. The healthy population needs to empathize with those who are suffering. Right now, it is important for the IBD student population in India to be vocal and to not be afraid of speaking up, but it’s equally necessary (although disheartening) to be aware, accept the fact that things may not always work in your favor, and not let rejections affect your mental health. The process of change is going to be very slow and sharing your stories publicly is the first step. Advocacy in India is not a right, it’s a privilege, and right now it’s necessary for those with that privilege to share it with others. This is also why I love the CCYAN fellowship and am grateful for it. In the end, as a chronically ill student in India, I just want to tell the IBD kids and teens of my country that it is going to be hard, but it’s doable, and I promise that I’ll do everything in my capacity to make it easier for you so that you get what you deserve.

“Everything you have ever wanted is on the other side of fear” ~ George Addair

Denial and Acceptance

Photo by Nadine Wuchenauer from Pexels

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This article is sponsored by Gali Health.

By Rachel Straining

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Playing Pretend.

For a really, really long time, I hid who I was and what I was going through. I hoped that playing pretend could somehow just make it all go away. 

I loved playing pretend when I was little. In my mind, I could be anything I wanted - a school teacher, a Broadway star, a scientist, a doctor. I would immerse myself in the roles as if they were my reality, creating whatever self and life I wanted that day. 

For a while, after I received my diagnosis, I thought I could do the same. 

I thought that if I played pretend, if I pretended it wasn’t true, that I wasn’t chronically ill, then it would all go away. If I pretended to be someone I was not - if I tried hard enough - then, maybe, just maybe, the self and life I wanted would become my reality instead. 

The older, manifestation-like version of dress up, if you will. 

Except chronic illness doesn’t work that way. Sure, you can manifest the life of your dreams in other ways, but that doesn’t mean you can wish away being chronically ill. It doesn’t work. I tried.

In the months after being told, “you have Crohn’s disease,” I thought of it like this: the more I ignored its existence, the more I wouldn’t have to deal with. Now I know what people mean when they say hindsight is 20/20, because boy was I wrong. In fact, the complete opposite happened. I had the belief that denying it all would be more freeing. In reality though, the more you try to suppress something rather than acknowledge and work through it, the more intensely and more continuously the feelings you’re trying to escape will show up. Then, the worse it gets. That’s exactly what happened to me. 

I would try to drink or eat or exercise the pain away. I would welcome people into my life whom I knew would never truly love me as a means to build this persona that was a facade to cover my heart. 

Eventually, it took spiraling down towards rock bottom to finally realize that acceptance is more freeing than denial ever was. I realized that acceptance held the door open towards self-love whereas denial kept it shut. 

I wish I could look back and say that there was one day, one instance, one stand-still moment in time when I looked at myself in the mirror and knew I had to come to terms with what I had worked so hard to ignore. I wish I could remember a specific point when the denial became too much to bear and I immediately knew I had to face the truth. But, just like everything else in my life, and just like healing, that path was far from linear. In fact, the path was kind of one that is so rocky that you best be wearing a seatbelt and holding on for dear life. 

With time, age, the right people in my corner, and a whole lot of therapy and introspective soul-searching, that rocky path from denial to acceptance led me to discover that the most vulnerable parts of ourselves, the parts that we once tried so hard to keep hidden in the shadows, are actually the most liberating. The most powerful. The most life changing.  

The people I choose to surround myself with and the intimate, intense self-work I’ve done and continue to do have helped me to see myself in the light as a human who is lovable and worthy and deserving. I am not a burden who has to dull her shine and her truth. And neither are you. Not only do people like my fellows, my family, my therapist (of course), and my Instagram-friends-turned-real life-friends motivate me to be better, but they also inspire me to be more of who I am at my core. To accept myself, to own both my pain and my power, and to use it to help those who are still too scared to embrace who they are.   

If I told my younger self that she’d be talking about poop, bloating, mental health, and the ins and outs of colonoscopies for everyone to hear, I think she’d probably crawl into a hole and not want to come out. When I first started sharing my story and first started getting involved in advocacy work, I felt a dual sense of nervousness and freedom. Every time I would post something and reveal a part of myself that, for the longest time, I so desperately wanted to lock up and throw away, I would physically start shaking when I hit that share button or go run around the house in panic because I couldn’t believe I put it out there. I couldn’t believe I put myself, my true self, out there. Sometimes, I still can’t believe it.  

But, if it doesn’t challenge you, it doesn’t change you. And change only comes when you face the truth, not when you run from it. 

I’ve been there, and I can promise you this - hiding in the darkness of denial and playing pretend won’t make your problems go away. I learned the hard way. 

Trust me when I tell you that you don’t have to hide like I once did. 

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This article is sponsored by Gali Health.

Gali Health is an AI-based personal health assistant app helping people with inflammatory bowel diseases (IBD) proactively manage their condition. Gali gathers knowledge from daily interactions and health monitors to tailor support and information to your specific IBD experience.

Navigating an IBD Diagnosis

By Samantha Rzany

Photo by morais from Pexels

When I was a diagnosed with ulcerative colitis, I was in college 4/5 hours away from home. While my parents were able to drive out for my initial colonoscopy and the important follow up appointments, a majority of my ER and doctor visits I had to do alone. It is always nice to have a friend or family member go with you to appointments as a second set of ears. You often are tired or may not feel well, and it is easy to miss things the doctor may be saying. 

Because of having to do a lot of appointments and ER visits alone, I have come to find some very helpful things in preparing for and going to a doctor visit by myself. 

I have found that I am often on a lot of medications. And I have taken many, many more in the past. It can be very hard to remember all the medication names and dosages, as well as who prescribed them and what for. Every time I go to get an infusion, I have to provide an updated list of medications. Each new doctor I visit, I have to give a full list of current and past medications. Every ER visit, they ask what I am on and what I have been on previously. In addition to the numerous different medications, I also have quite a few doctors for various things. I also have all the doctors I had seen back in Indiana where I was initially diagnosed. So in order to get any medical records, I have to be able to quickly provide those doctors’ names and numbers. 

One thing I have found to be very helpful to keep track of all of this information is an app called MediSafe. It is on my phone and allows me to put in all current and past medications, what dosage and how often I take those medications, and when I started/stopped them. It also allows me to check any drug interactions with current meds and other future ones I may be prescribed. I can also input all of my doctors and their information, as well as upcoming appointments. This app helps me keep all my information in one spot where I can easily access it when I need to. I definitely recommend finding some kind of app similar to this where you have all your information easily accessible whenever you need it. 

Another thing I have found is that I often end up having to get multiple kinds of specialists. I get prescribed medication A to treat my ulcerative colitis. That causes certain side effects. I am then told to see a specialist, who prescribes medication B. But mediation B causes side effects too. So then I have to take medication C to treat those side effects. But mediation C can cause certain issues so I have to take supplements D, E, and F to keep everything balanced. And suddenly I am on 6 medications and seeing 3 different specialists because of mediation A to treat my initial problem. 

With all these new specialists and medications, I am often going to new doctors and explaining my symptoms and issues I am having. Especially due to the recent COVID-19 pandemic, most doctors offices are only allowing the patients back into the room. That means I have to have all the questions to ask the doctor and pay very close attention to everything they are saying in case I have follow up questions. I have found it very helpful to have a prepared list of questions ready to go for any specialist I see. I make sure to get a clear and concise list of symptoms ready ahead of time, as well as when they started and if there were any changes in medications or anything else around that time. Below are the typical questions I ask at nearly every new appointment, especially when discussing new medications.

• Will this medication interact with any of the medications I am currently on? (List all medications, including ones not for IBD)

• What are the main side effects of this medication?

• How is this medication typically tolerated in patients with IBD?

• How long will I be on this medication? 

• What are some severe side effects to look out for?

• How quickly should I notice a change?

• Are there other options of medications to treat this issue in case I do not tolerate this medication well?

• What time of day is best to take this medication and should I take it on a full or empty stomach?

• Is there anything else I need to know about this medication?

Obviously, these questions may not include everything you need to know and you may not be able to ask all of these. But these are some of the things I try to ask either at my appointment or in follow up messages to the doctor. Anytime I see a doctor that is not my GI if they prescribe me a new medication, I send a message to my GI to clear that with him. Since my primary condition is my IBD, I want to make sure that nothing I take to treat other conditions will have a major impact on that. My GI has been really good at getting back to me with which medications would be find to take and which may cause problems for me. 

Navigating new doctors, medications, and conditions on your own can be stressful and intimidating. But preparing your questions and information ahead of time can make it much easier to tackle. If you have questions or need help to try to get your information together, please reach out to me! I’d love to help! If there is anything else you have found helpful in navigating appointments on your own, let us know!! 

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How to Communicate Relationship Boundaries While Living With IBD: Texting Templates

By Amy Weider

I have been a sex educator going on two years now and a commonality you find between all progressive sex educator work is that there is a stress of the importance of communication. We advocate for having open and honest conversations around consent, boundaries, STI testing and much more. communicating boundaries can be intimidating and often times it makes you feel like you are coming off as needy and fear one might lose interest in you because of your needs. We must navigate the disclosure of our lives and our level of comfortability regarding different types of relationships for example, hookups, friendships,  dates, and long term relationships. communication is the key we say but many times we aren’t taught how to truly communicate our boundaries or limitations. In order to achieve successful relationships it is good to practice what we feel comfortable sharing with a person and how we want to do so. There is an Instagram sex educator @whatswrongwithmollymargaret who makes text templates for hard or nervewracking conversations. She touches on how to address being ghosted, how to ask someone on a date, and even asking a date about their accessibility needs!

I was so inspired by these posts and actions and it further made me acknowledge that communicating needs and boundaries becomes even more important when you are someone with a chronic illness. As a person with inflammatory bowel disease (IBD) my general energy levels can vary dramatically depending on the day. Because of this and my sex education work I wanted to share some of my tips and text templates for how to communicate boundaries around relationships and talking about IBD. These are all really individualized for me, a Crohn’s kid in remission who hasn't had any surgery. They obviously can be used and modified. If you have any of your favorite ways please share in the comments below.

Spoon theory

I like to introduce spoon theory very early on in my interaction with folks and continue to incorporate spoon check ins with every how are you what's up text. Spoon theory is an easy way to explain what's up with yourself without disclosing too much information about your disability/illness. It also gives me more room for an explanation of why I am canceling hook ups or dates without the interrogation of intentions or rudeness. 

“I have a chronic illness, which means my energy levels are different from those who do not have one. I start the day off with say 12 spoons when you may have an unlimited amount of spoons. So it is harder for me to do all the things that are easy for you!”

“Hey!! I just woke up and I am not feeling so hot oof. Have you heard of the spoon theory? For me, it means that I am unable to be as “productive” as others because of my chronic illness. So I like to measure my energy in spoons. Long story short I am low on them today. Anyway that we could change our date to something cute and low exposure maybe a movie and some snacks :-)”

“SPOONS LOW rip can't text you as much today as I must sleep for 10 hours lol. I will dream of you and text you when I wake up!”

Disclosing Disease

I tend to be light talking about my disease and progress towards deeper conversations around it with folks the longer I know them! Here are a few ways I have disclosed my boundaries around talking about my disease before. 

“I have Crohn’s Disease, which means my intestines and digestion can be unhappy a lot. I am in remission however though so it does not directly affect my daily life now and I don't love talking about it but hopefully one day we can get to the point where I could open up about it!!!”

“I have IBD which is inflammatory bowel disease, meaning basically because of all the inflammation I really can't digest anything. It has really affected my life and is an important topic I'm passionate about. Honestly, I'd love to talk deeper with you about it if you're down.”

“My health hasn't always been the best. I have IBD which affects my colon and I was diagnosed at a young age which affected my life. I am in remission now!! I get an IV every six weeks for a couple hours or so. I always say you know it's real when I take you to meet my nurses at the IV therapy appointments lol.

Asking for support

A big one for me is setting a boundary of disclosure transparency around when someone who I am going to see in person isn't feeling well so I do not risk my own health. I thought this was selfish for so long but I know it is not!! 

“Having IBD and being on immunosuppressant drugs means that I can easily catch a virus cold, maybe even a good lord. So if we are gonna see each other i'd honestly love it if you can just be honest with me if you aren't feeling well before we meet up. I can do the same for you if you liked!!”

Dating and IBD

By Rachael Whittemore

*I am writing from the point of view of a heterosexual, cis-gender woman.

Dating, romance, intimacy, relationships…All of these things can sound intimidating to anyone and even more so to someone living with IBD. There are the physical and emotional challenges we deal with every day to try to get to a positive place for ourselves. We get nervous before dates too, but instead of nervous butterflies, it feels like nervous knives wrenching your stomach. Worrying about not having a bathroom nearby or not making it to the bathroom is commonly in the forefront of our minds. Sometimes, we wonder, where does that leave any room for the thought of romance? As humans, many of us like to be in control of who we choose to interact with and count on this control to extend how we present ourselves to a potential partner, both physically and emotionally. When some of that control is lost as we navigate life with IBD, dating and romance may not seem attractive (pun intended). 

Though everyone’s experience with romance and dating is different, I think there are some great things to keep in mind when approaching it as someone who lives with a chronic illness. There can be a lot of pressure from friends and family to get out there and try to meet someone...I know I’ve felt it before. And sometimes we want connection and intimacy but not the label of a serious relationship - that’s ok too. In my experience, one of the most important things I’ve learned is that if you don’t feel ready to pursue dating/romance, you’re probably not ready. Sometimes something great comes out of the blue, but I have to feel comfortable with myself and my body to allow myself to be open to another person getting to know me on a more intimate level. 

“I have to feel comfortable with myself and my body to allow myself to be open to another person..”

Right after my diagnosis at 23. I had lost weight, but felt disconnected from my body and was in no way ready to date.

A big challenge for me when I finally *felt comfortable* was anxiety about if or when I should disclose that I have IBD with a guy I’m seeing. I felt this pressure because meeting someone usually involves going out to eat or drink, and this requires more preparation for us than the average person. Would they question why I can’t go to certain restaurants? Will they think I’m weird if I don’t want to drink? Will they make fun of why I can’t eat dairy or avoid other foods? Using food and drink as a backdrop for conversation and as a way to meet someone suddenly becomes another thing to worry about. A few days before a date, I try to have a few restaurants in mind that work for my needs but are usually well-liked by others as well. Having options gives you power to have choices for yourself and also give your date some fun options! I don’t have a magic formula for how you approach every date, but I usually try to be up front and open about any dietary restrictions or just say “I’m not drinking tonight” and leave it at that. If the guy I’m with seems genuine and wants to know more, sometimes this has opened up conversation to the “why.” I’ve definitely said: “It stinks I can’t try that awesome-sounding beer, but I have GI issues I deal with so am skipping that tonight.” Most are respectful and don’t question it. One time, I was even able to share about my IBD with a guy after we had spent hours talking. We just connected really well, I was in a safe space and he genuinely wanted to know more. I would say that was a rare instance, but this helped educate someone about real issues of living with IBD and having a social life. Even if guys I went on dates with didn’t really get it, I appreciated their willingness to hear me out and not make me feel guilty or like an outsider for needing accommodations. If someone does make you feel guilty, they probably aren’t worth your time. 

I’ve also been very lucky to feel secure and understood in my current relationship. An added plus is that my boyfriend works in the medical field and knew about my ulcerative colitis (UC) diagnosis prior to dating when we were friends. He was respectful whenever he asked questions about how I was feeling or about how I was diagnosed and being treated. He knows about my diet, what I have to avoid and doesn’t hold that against me. Bonus: he’s been a great partner in terms of helping me give up cheese and milk because he’s lactose intolerant too! Having open communication lets me feel comfortable sharing how I feel. If I’m flaring, he knows and understands when I have to shift my diet to bland food and stay away from alcohol and eating out. He checks in on how I’m doing mentally/physically in regards to IBD, but always in a supportive way. He also makes me feel beautiful and special inside and out, which is important to me since our bodies undergo lots of changes with IBD, from weight gain and loss to feelings of body disconnect and failure. 

And in terms of going through periods of disconnect and acceptance with your body, it’s so important to have someone who respects your wishes and your body. If you aren’t ready to be physically intimate with someone, that’s ok. The complex pathophysiological way that IBD affects us can cause sexual dysfunction as well (1). Not to mention things like medication side effects, surgery, living with an ostomy, pain, coexisting anxiety/depression, fatigue, other medical conditions or being in the middle of a flare. All of these things can have an impact on our sexual health and you should never be discounted for not wanting or being ready for physical intimacy. Personally, when I’m flaring, I feel gross, dirty and don’t want to be physically intimate. I usually just want to focus on getting out of my flare, resting and maybe getting a backscratch here and there from my boyfriend. Discuss with your partner any expectations, worries and what you know works for you in terms of physical intimacy. It can take time and patience to figure out what feels good for you and when, and doesn’t cause pain or anxiety.

“...you should never be discounted for not wanting or being ready for physical intimacy.”

27 and trying to live my best life! Happy and feeling so supported in my current relationship.

That being said, there’s so much you could talk about in the topic of dating and intimacy. Feeling ready and connecting with someone who is respectful of you as a person - not just a person with IBD - is so important. Your value is not diminished because you have a chronic illness. Sure, it brings challenges, but we all deserve partners who care about, support us and cherish us, IBD and all. The ability to be vulnerable and communicate openly with someone about the physical and emotional challenges of living with IBD is important, and a vital part of any relationship, regardless if it’s casual or serious. When you do feel ready though, dating and healthy relationships takes time and work, but it can be a beautiful way to connect with someone else, share adventures, enjoy intimacy and even learn about yourself. 

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My IBD Life: The Road Not Taken

Hello everyone. I hope you had a wonderful World IBD Day! 

The month of May is special to me because May 17 happens to be my stomaversary! Three years ago, on May 17, I received my ileostomy. It was a decision that I made after Infliximab a.k.a Remicade gave up on me. My doctors wanted me to try some more meds, but I insisted on the surgery. I wanted a permanent ileostomy, which was quite a surprise for the surgeons. I remember them coming up to my hospital bed and asking me questions about my education and background. I smiled and assured them that I did want my ostomy to be permanent. In a country like India, where stigma and taboo exist even with the state of being ill, it is rare for a 24-year-old person to ask for something like an ileostomy, additionally, a permanent one. 

I actually wanted an ileostomy back in 2015. I would have had a temporary ileostomy then. I had already failed most meds and immunosuppressants with the exception of MTX (methotrexate) and biologics. I could not afford biologics and the doctor I consulted then had already told me that only biologics or surgery could help me get better. Soon thereafter, I started visiting the outpatient department of the All India Institute of Medical Sciences (AIIMS) in New Delhi, which is considered to be the best hospital in the country and it is a government-run hospital, so consultations are free. However, owing to the massive burden of patients that it bears, not every patient gets the same level of care. The doctors try their best, but they are humans after all. 

When I went there, I begged the doctors to give me an ostomy. I had already watched countless videos on YouTube about young people living their lives with a stoma, and I figured a surgery would buy me some time and my intestine would heal, and I could get it reversed later. I was 22 then, and the doctors told me that a stoma at 22 would make my life very hard in India. I was thus advised to try the same medicines once again that I had already failed along with some new antibiotics and brands of aminosalicylates. I did not do any better on them. My condition was deteriorating and my scans were not good, but it was still not bad enough to get me into a bed at AIIMS. Meanwhile, in addition to my symptoms of constant bloody diarrhea and weight loss, I was beginning to experience some pain in my pelvic regions whose intensity and duration were growing day by day. 

In December 2015, I went to the GI OPD at AIIMS and cried straight for 4 hours in pain. It was then that a senior doctor saw me and I got to consult with him. I begged him to operate on me. He consoled me and assured me that I would be treated better and I was then admitted to the GI ward. I stayed there for a month amid more courses of steroids, antibiotics and scans. On January 2nd, 2016, my 23rd birthday, I was given my first dose of Exemptia (a biosimilar of Adalimumab a.ka.a Humira) which was cheaper than Remicade, and patients at AIIMS were provided with some assistance by the firm that manufactured the drug to lower the financial burden. I went home with some hope which lasted for only 2 weeks. After 2 weeks, I lay 24/7 in pain in my bed, 10 steps away from the toilet. I managed to pass some firm stools, but that made the pain even worse which was now affecting both my hips and lower back and my thighs. It felt like a thousand hot steel knives carving into the flesh inside my intestines and my pelvis. I frequently visited the ER in the middle of the night, screaming in pain to get a dose of IV Tramadol.

As I write this, it almost makes me want to stop writing further. I remember taking sleeping pills, antidepressants, and tramadol pills to sleep and kill the pain. I remember trying to end my life for 2 nights. I remember trying to hang myself. I remember giving up. My younger brother had received an offer of admission from Imperial College London, but he was working instead, to run the house and afford my treatment. My parents had separated. I figured it would be better for everyone if I killed myself. I really didn’t want to die though. I just wanted the pain to end. I eventually ended up admitting myself again in the hospital in February. An MRI of my spine did not find anything. Psychiatrists thought I was exaggerating my pain because of past emotional trauma. The SR (Senior Resident) who oversaw me in the ward did not believe me when I told him that Adalimumab was not working anymore and my symptoms were worsening. After a month, I ended up faking wellness (I told my doctor I wasn’t feeling any pain on Clonazepam, when in fact, I stayed up all night in pain and additionally did not ask for a pain shot) to get out of the hospital. 

Back home, I started taking more pain pills and anti-anxiety drugs. The biologic was not doing its job anymore and after another month at home, I was back in a bed at the hospital. This was my worst. I was totally incontinent, bedridden, and weighed 80 lbs. I passed blood and mucus incessantly even when I was ordered not to eat/drink anything. Doctors had given up on me, and Infliximab was just too costly. There was no way I could afford it. One night, the SR came in and told my mother to take me back home. That night, once again, I found myself thinking about death. I was not afraid of it, but I regretted that I could not do anything significant. My ambitions and dreams were dying with me. The next day, I and my friends started a crowdfunding campaign to gather money for Remicade, which was very successful owing to the kind generosity of my college batchmates, and I gained some more time on Remicade. But the pain never went away. It was constant and Remicade had minimal effect on it. I was still incontinent. All that any drug could do for me was to decrease the number of my visits to the toilet. Incontinence and pain were chronic. I depended on diapers, a cocktail of many pain meds, and many unhealthy, unsafe, and drastic measures to get through the day and night. I was getting Remicade infusions every month instead of the usual 8-week frequency because there were signs that Remicade too was not working. I found myself in the hospital every other month.

When Remicade finally gave up on me, and I had lost 2½ years, I decided it was time to get rid of my colon once and for all. My GI tried to persuade me to try some more treatments like FMT, but I aggressively denied. While I was being taken into the operating room, my surgeons once again asked me to permit them to retain my colon. I told them that if they found anything worth retaining, they could. When they opened me up, they found - “Hepatic flexure, transverse colon and up to upper rectum thickened. Descending colon and sigmoid colon densely stuck to parietal wall, mesentery shortened and thickened”. These are the intraoperative findings as written on the operation note from the day of surgery. The surgeons could not save any part of my colon except for the lower rectum and anus. When they told me after the surgery that they could not save anything, I was not sad. I was relieved. My pain was gone. I had a chance to re-build my life now. I would not have to stare at the outside world from the window grills of the hospital hallway anymore. I don’t know if that operation note explains my pain, but I firmly believe that I was never insane or exaggerating my pain because I never needed IV Tramadol after the surgery. Earlier, I had been labeled an addict and treated like a liar. All my self-doubt disappeared after my surgery. 

Getting back on my feet with my ostomy was not easy. I suffered from ileus immediately after the surgery and I could not keep anything down. I was sent home prematurely because that is how things work in a hospital with too many critical patients and too little beds. I was dejected and did not want to go to the hospital. I was scared because this surgery was supposed to work. I was vomiting furiously. Reluctantly, I admitted myself back after 3 days of discharge and finally after 15 days, my stoma ejected out gallons of intestinal juice like a fountain, and when it stopped, I could eat again. I went back home. After 6 weeks, I was back to work and I never went back to the hospital again, not even for a follow-up or to get my discharge papers. I had lost a lot. Now I had to get everything back. Finally after 2 years, in August 2019, I found myself in the best graduate school in India - the Indian Institute of Science.

I never want to tell my story to people, because I’m not sure what kind of message it sends out. When I go to the annual meeting of ostomates at AIIMS, I find nobody in my age group. I feel alone and wonder if I made the right decision. I wonder if I would encourage another 24-year-old in India to get the surgery. I often did many things that bordered on insanity to get through the intense pain I felt for over 2 years. I often ask myself if I could have done anything else. What do you think? What would you have done if it were you instead of me? What would you choose? When I told other patients that I was getting an ostomy, I received many messages urging me not to go for it. They told me it would destroy my life. Here I am though, living with minimal pain and no meds, in the best graduate school in my country studying Aerospace Engineering, which was my childhood dream. However, I have a very limited social life. I might never be able to work for an industrial organization. I don’t even know if I can make a career in academia. My future is still uncertain. With every passing year, statistically, my chances of falling into a relapse increase. My rectal stump still passes out mucus and blood frequently, and my stoma health is not so good. In a hurry to make up for lost time, I also haven’t given myself time to process everything that has happened to me. 

I guess in the end, it’s a journey of self-discovery where you find out who you really are, what matters to you the most and what you are capable of. I am content with the choices I made, good or bad. Things could have gone more wrong because of my choices and I might not have survived. I was prepared to take that risk though. I had dreamed a dream, and when that dream was lost from me, I wanted it back so desperately, that I was ready to sacrifice anything to get a chance to work on those dreams again. That’s who I am. I never knew if it would work out, but I sure did believe. And I hope you believe it too. No matter how bad it gets, I want you to believe that things can work out well in the end. And I want you to hold on to that belief firmly. 

I share my story in the hope that you don’t give up like the many times I did in despair. I hope that whatever road you choose for yourself ends in a brighter place than where you began. I hope that your story becomes a greater force of hope than mine. I hope.