Body Trauma and the Importance of Regaining Trust with Your Body

By Amy Weider

After any body trauma occurs in life one needs to make amends and heal from it. When we are going through a painful life event or any attempt to heal, the process can become increasingly difficult when you are not believed. Learning to regain the trust in your body after you have been invalidated and told to do otherwise can be increasingly difficult. Here I am going to explain a bit about my body trauma, the ways it occupies my life and how I have rebuilt the trust with my body. Trigger warning: mention of sexual assault.

As April is Sexual Assault Awareness month, I thought this would be the perfect time for me to further explore and write about my connected relationship between being a survivor of both sexual assault and Crohn’s Disease. For me as both a sexual assault survivor and someone with an invisible illness, Crohns Disease, I never thought the two could relate, but after I started understanding my assaults more and the ways I handled it, it all felt too familiar. A big linkage is the fact that the people you confide in to express your pain, cannot see either trauma. In both of these life events, folks had to take my word for my pain and believe me. I am so thankful that I was given believing from family and friends and their constant love and support to pick me up and help me through these times. But the world still manages to seep in and flood the mind with doubt and complexities to both of these things in my life.

When people don’t believe you are in pain or what you are going through because it is internal, it causes forever damage to your relationship with trusting your own body. When I was first going through my Crohn’s diagnosis it was hard to trust how my body was feeling when I was being told that it is all in my head or when doctors did not know what to do with me and my symptoms. Many times when folks need a medical diagnosis, they are brushed off as wanting attention or they “don't have it as bad as others,'' having symptoms that  appear to be less urgent.This is very samiliar retohric we hear in the media and our everyday lives when it comes to talking about sexual assault survivors. Both survivors of assault and invisible illnesses experience a forgein threat to their body and both engage with the world’s pre conceived notions and ingrained disbelief that relates to the attempt to get help or seek acceptance. 

Another experience that seems to be universal among folks with body trauma is the grieving process that can occur. It is so normal to grieve how your body used to be or function in everyday life pre trauma. In my own experience, I will often refer to myself as “pre-Crohn's Amy” and “post-Crohn’s Amy.” I am absolutely a different person than I was before my Crohn’s diagnosis and a different person than I was before my assaults. It can sometimes be hard to accept that things you never chose to do or had any say in affects your life so much and has changed you. I am in love with the person I am today but that does not make it less difficult at times to think about how life would go if these things had not happened.

There is not nearly enough credit given to those who believe what their body tells them they have been through and have to stand up for themselves because of it. I have had to retrain myself to believe when I am in pain and stand up for myself when that happens. I have learned that in society, we have a notion that there is a limited amount of love to be given out. This noise often impacts us and forces us to think “it’s not that bad” or “others have it worse.” Sure, maybe that is true, someone will always have it worse but this is a tactic used so often to diminish someone’s pain and prevent healing. Trusting my body and my pain requires me to take all things that happened to me seriously and not downplay them to make others more comfortable. 

My past experiences have given me a sixth sense of listening to my body without questioning it. If I feel tired, stressed or possibly sick I listen and I do what I need to do for further prevention. I do this without any shame now and I think survivors of any body trauma deserve to feel nothing less than prioritizing themselves, their health and their safety. In these times we are constantly being reminded that our bodies are fragile and all we have. 

Confined with Crohn’s

By Simon Stones

Like millions of people around the world, I am doing my bit to control the COVID-19 pandemic, as well as my own health, by staying at home. What seems like torture for many is actually a relief for me – even though I may be getting a bit fed up of being forced to stay in after a few months.  

Having followed posts on social media over the last few weeks as more and more countries have imposed ‘lockdown’ measures, I’ve grown increasingly concerned for people’s physical and mental health – having quite literally seen people breakdown and unable to cope after a matter of days cooped up in their homes. For some, they’ve never had to experience being forced to do something they don’t instinctively want to do. For others, it reignites the memories of past traumas when they were forced to stay at home – perhaps during their diagnosis of IBD. But finally, for some, home isn’t the safe place that it is for many of us, and we need to recognise that and try to support those individuals as much as possible.

During these unprecedented times, we’ll experience a whole raft of emotions – fear, anxiety, anger and frustration being right up there at the top. However, being the optimist that I am, I think there’s going to be an awful lot of things which society will learn from this pandemic as a whole – and even more things which we’re going to learn as individuals, which will make us re-evaluate our lives and actions – hopefully for the better.

Nobody likes being told that they need to do something – it goes against our instinctive behaviour to be social and independent. However, it’s for our own good. As somebody taking biological immunosuppressive treatment to manage my Crohn’s disease and arthritis, I know that I am at an increased risk of complications if I was to contract the coronavirus. If I have no contact with people, then I’m dramatically decreasing my risk of contracting the virus – as well as limiting my need to rely on healthcare services which are going to be stretched beyond limit in the coming weeks and months. To be fair, being at home has not bothered me one bit – I’m quite enjoying it! I have had PLENTY of opportunities to be used to this though. Throughout my childhood, I was forced to spend more time at home because of ill health, and in recent years, I’ve had no choice but to stay at home more to look after my mum. These experiences have fortunately taught me a few lessons for life. Aside from feeling happy and safe at home, my experiences have taught me to be comfortable with my own company – something which many people struggle with. They’ve also taught me to appreciate what really matters in life – your health and your loved ones, which more and more people are slowly starting to appreciate. 

While I’m coping really well, I appreciate and empathise with others who are struggling – which is nothing to be ashamed of. It’s at times like this when everyone is reminded that we’ve got to look out for each other. My door (metaphorical of course at the moment!) is always open, for people who want to chat, rant, scream, cry or sing – so please reach out to me if you just need to talk. I also thought this could be an opportunity for me to share some things which work for me while staying at home. They may not work for you, but it may be worth giving them a try!

Routine or no routine – that is the question

Some people love routine and structure to their days; others much prefer randomness! There is no right or wrong answer – you’ve just got to find what works for you. Despite being particular on a lot of things in life, I’m one of those who I guess ‘sits on the fence’ with this one. My working week tends to follow some kind of pattern, though I’ve learned to keep things fairly flexible, to fit around me. Some days, I really don’t feel like doing much, so I’ll take it easy. Other days, I’m on it from the get-go, and will fit in tons of things. The most important thing to remember is find what works for you!

Finding your activity regime

Keeping active has never been more important! Here in the UK, people are allowed to go outdoors for one form of physical activity per day. I’ve decided to not go beyond my house, for obvious reasons, and so I’ve dedicated time every single morning to finally get back into yoga – which I’m absolutely loving after nearly three weeks of practice now. It has taken the current situation to force me into practicing something until it becomes a habit – and I certainly feel better for it now. Yoga is one of those forms of activity which is great for those of us with joint problems, since you can do as much or as little as you want! I’ve been using the Down Dog app, which has a guided instructor taking you through things. Not only does my body feel better for doing it, but my mind is also feeling clearer. It has forced me to slow down, focus on myself, and ‘be’ in the present. Yoga may not be your thing, so find something that is – at least give something a try, and if it’s not for you, move on to the next!

A dedicated space to work

Having a dedicated space to work is really important. I have my computer set up on a desk in my bedroom, with the correct set up for my posture. There’s also plenty of space for the textbooks, papers and other materials to be alongside. It helps for you to have somewhere to go where you can focus solely on what you’re trying to do, which also works when you want to leave your work alone and think about something totally different!

That being said, variety is also important, especially when you’re sat in the same spot, looking at the same screen (and the same wall behind it for me) more or less every day. So, I’ve agreed with myself to use my desk as the place where I’ll write my PhD thesis. For everything else, such as dealing with other emails, charity work, and other computer tasks, I’ll use my laptop at different places in the house. Sometimes it’s on the bed, or at the dining table, or sat on the sofa, or even in the garden! These aren’t ideal places to be, especially for your posture, but it’s sometimes nice to have a change of scenery.

Keep yourself fed and hydrated

While some people may find that they eat and eat and eat while they’re at home all the time, I’m actually the exact opposite! Especially when I am working, I often slip into the habit of doing ‘just a bit more’… and before I know it, it’s 4pm and I’ve still not had any lunch – which is no good! So, I’m really disciplined with myself now and ensure that I always set time, away from the computer, to have breakfast, lunch and dinner. Making sure you keep yourself hydrated is also really important – which may mean cutting back on the coffees! I’ve switched everything to decaf now so I can enjoy a cuppa without making myself more dehydrated. I’ve also been tracking my fluid intake on my Fitbit app (as well as calorie intake) which does force you to keep up with what you should take each day.

Take breaks, and don’t feel guilty

This is a big one! You may feel under pressure to be working every hour while working at home – but that really doesn’t work. I tend to break my day up with breaks here and there – sometimes it may just be going to the kitchen to get something to eat or drink, but sometimes it could be 30 minutes or an hour spent watching some TV, or reading, or listening to some music. Whatever it is, make sure you do it! You’ll find you work so much better during short, focused periods of time, when your mind can be on the task you’re working on.

Stay connected with others, as much or as little as you want

It’s really important to stay connected with loved ones, acquaintances and colleagues, especially at times like this. I often speak with family members and mum’s friends several times a week over the phone, just like I chat to our neighbour over the fence when we’re both near the side door. Friends tend to message and video call, which is always nice. We have to look out for each other. It’s also fine to sometimes switch off from the outside – we need that too. I sometimes ignore phone calls during the day, especially when I’m busy working. Keeping connected is important, but I also have to work at the same time, so multiple interruptions each day for an hour phone call at a time isn’t always helpful! Don’t feel guilty – I usually drop them a message to say I’ll call them later, unless something is wrong!

Making the best of a bad situation

Nobody would wish for what’s happening to the world right now – but sadly, a lot of it is out of our control. The control we have is to follow guidance, stay at home, limit our contact with others, and ensure we act responsibly when it comes to shopping and using healthcare services. What we can control is our thoughts and actions. It’s not easy by any means, but it is possible. How can you make the best of a bad situation? What can you now do that you’ve been putting off for ages? How can you use this time wisely to focus on yourself and your loved ones? These are all things that are in our control. Whether you take some time to slow down, or pick up a new hobby, or even plan for the things you’re going to do when the world comes out of hibernation – they’re all things that can help to pass the time. Never let the things you can’t do stop you from doing the things you can do!

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Please reach out to local/national groups and associations for help and support, even if it is just somebody to talk to. People are ready and waiting to offer a listening ear. Don’t forget to check for up-to-date information from your national Government or public health authority during the COVID-19 pandemic. Stay safe, stay healthy, and stay positive!

Living Beyond the Limits of IBD

By Grady Stewart

“Tired of feeling dizzy from my situation, I realized I had a choice. I could let anger drive my college experience, or I could appreciate the things I was capable of doing. “

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I lived in a dorm building named South Hall when I was diagnosed with ulcerative colitis. It was four floors of ambitious and energetic college freshman. At night, I could hear a wavy hum of untapped potential buzzing in the air. The beginning of college, or the beginning of anything, really, is always incredibly alive with possibility. I was surrounded by other students who were tired of waiting. Together, we all marched headlong in any adventure that awaited us. We were adults at last. It was our time.

The community atmosphere and energy of college is rarely found anywhere else. Specifically, the college dorm is the world’s most diverse ecosystem. You throw a few hundred students who come from different places and who have different backgrounds into one building. You tell them to coexist, and somehow, it’s self sustaining.

While college is a time of new friendships and experiences, it’s also easy to blend into the bustling background of daily college life. Adulthood comes with stacks of new responsibilities. It’s cutting the ropes that have anchored your life, and sailing off into the unknown. Independence means making difficult and often ambiguous decisions on your own. Living with a chronic illness, such as Crohn’s disease or ulcerative colitis, complicates young adulthood even further.

Many of my classmates were seemingly able to attend class, complete household chores, and party every weekend with ease. For me, however, it was a challenge. It was difficult to look around at the thousands of students surrounding me and see them achieving things that felt impossible to me. It’s frustrating to have persistent anxiety about where the nearest bathroom is, when for others it’s an afterthought. Simply put, my first taste of freedom was bittersweet. Like Prednisone, the aftertaste lingered and was hard to swallow.

It’s isolating to feel weak and abnormal. Moreover, physically living in a dorm room can be lonely. Other students were able to roam the campus without any concern, but often I confined myself to my dorm due to pain. I felt regret at not being able to fully experience certain aspects of college life. Chronic illness is a spiral that envelops your life. It spun around me until everything else in life was blurry. Tired of feeling dizzy from my situation, I realized I had a choice. I could let anger drive my college experience, or I could appreciate the things I was capable of doing.

There’s no clear solution to unraveling the sticky web of chronic illness. Everyone has a different relationship to their body and their health. Everyone has a different path to college, their career, or adult life in general. Today, I’ve graduated from college and survived numerous triumphs and setbacks. I have a full time job, and get excited about buying snacks in bulk from Costco. Clearly, I’m a real adult. One of the keys to embracing life with ulcerative colitis or Crohn’s is embracing change.

It’s easier written, or said, than done. However, I believe that illness is not an impenetrable barrier. It’s an obstacle, a heavy boulder, that patients must carry. Still, everyday that I live with ulcerative colitis, I learn something new about myself. As a result, it’s become easier to adapt to life with illness. I know my strengths and my weaknesses, and I have gotten stronger. My experiences have made it easier to move, while carrying the weight of my diagnosis. Transitions, like from college to employment, are not impossible for me, instead they provide an opportunity for me to overcome my illness. After all, I have IBD, but I am not my disease. In the end, I know the boulder of IBD will erode into a tiny pebble. Until then, I’ll keep living beyond my limitations.

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My IBD Life: Living with Incontinence

By Nikhil Jayswal

Hello everyone! 

Last month, I wrote about the issues I face travelling as someone with an ostomy. I pointed out that the lack of easy access to clean and accessible public sanitation facilities has been a major source of problems for me. It was still so when I did not have an ostomy because before having an ostomy, I was incontinent and relied heavily on adult diapers. The experience of being incontinent for a year and a half, greatly affected my outlook on life and my inner self. Incontinence is a very emotional topic for me, and this month I want to share those emotions with you.

To clarify things, when I say incontinence, I mean faecal continence – the inability to hold stools. It is a common symptom experienced by many people suffering from IBD, and it is more pronounced if the rectal and anal regions of the GI tract are affected by IBD. There is a sense of “urgency” when it comes to going to the toilet and once in a while, our bodies betray us and “accidents” happen. 

I suffered from total incontinence, which means that I had no control over my bowels and I had A LOT of these accidents/mishaps. As a consequence, diapers became an integral part of my wardrobe. However, adult diapers are very, very uncomfortable - they never fit nicely, they leak from the sides, and once you’ve pooped in them, you can’t sit until you clean up and replace the diaper. Eventually, I was able to travel and work wearing diapers, but being in a public place with a diaper was still scary. There would be no place to change them in a safe, private and hygienic manner. 

The first time I soiled my clothes and the sheets, I cried straight for an hour. My mother helped me to clean everything and tried to console me, but I kept on sobbing. I went to meet my GI a few days later and told him that I was having these incidents. In response, he casually told me to use diapers. I felt like I was making a big deal out of a tiny thing. I went back home crying silently. I began wearing diapers since that day and I kept trying to acclimatize myself to the experience of wearing a diaper 24/7. Adult diapers in my experience, really aren’t designed for movement. I had to learn how to adjust them so I could sit properly. I had to use some hacks to ensure that if my poop was watery, it wouldn’t leak off the sides of the diaper. With every passing month, I was becoming more and more proficient at living, travelling and working with the “comfort” of a diaper. 

On the other hand, my disease was not responding to any treatment and kept escalating in severity. That kept escalating the frequency of my visits to the toilet and also worsened my incontinence. Things quickly started going downhill after I failed the biologic Adalimumab, a.k.a Humira. Soon, I was admitted to the hospital because of my worsening condition. My CDAI (Crohn’s Disease Activity Index) was over 700 (a score above 350 is considered an indication of severe disease activity). My toilet visits were very frequent, almost every hour and I had become completely incontinent. I can still remember the helplessness I felt when poop began to run involuntarily down my thighs, while I was cleaning myself up after a visit to the toilet. I was horrified because I had zero control over it. I could not hold it for a fraction of a second. I remember myself crying and letting poop flow down my legs until it had stopped, and then going back to my hospital bed and then crying again. After a few more such incidents, I was ordered to not have any food and also restrict myself to the bed. I was bed-ridden. This was the absolute lowest point of my IBD journey.

The first time I saw someone bed-ridden in the hospital, I made a promise to myself. I promised to always find the strength to go to the toilet, no matter how sick I would be. I promised never to let myself get bed-ridden. Little did I know that someday, I wouldn’t be able to keep that promise. When I had figured out how to travel and work efficiently wearing diapers, I had acquired a certain sense of pride. I thought I would always be able to adapt to anything. I used to feel independent and strong. All that pride, that strength, came crashing down when I was bed-ridden. 

The day I was ordered to stay on the bed, my doctor gave me an Infliximab a.k.a Remicade infusion, which luckily worked! After 4 days of the infusion, I had firm stools. I was bed-ridden for those 4 days. Remicade helped me get my dignity, my strength back. It did not resolve my incontinence completely, but I regained a tiny bit of control and was able to work and live with the assistance of diapers again. There was one particular very nasty accident at work, where I soiled my pants, and somehow managed to escape back home without anyone noticing what had happened to me. Apart from that though, I was a pro with diapers. In my next hospital admission, I even managed to sneak out of the hospital and go outside on the road to get food and get a look at the world I couldn’t see from my hospital bed. Couldn’t have done that without diapers.  

Incontinence, or having no control over your excretory processes, is something that goes against the very idea of being young. We generally associate it with babies and the elderly. Poo becomes taboo as soon as we are potty-trained. What happens in the toilet stays in the toilet. Bed-wetting becomes a matter of shame. Incontinence somehow made me feel inferior to my healthy friends. Being bed-ridden was an even more indignifying experience for me than being incontinent. Being bed-ridden meant I was no longer able to “stand on my feet”. Remicade and diapers helped me get back my sense of freedom. That freedom, even if it was partial, was a big boost to my morale. I felt less sick. I felt I was still a young man.

My incontinence parted with me only after my ileostomy surgery. We lived together for a year and a half and it took away some things from me, but also taught me many things. The process of getting comfortable with incontinence was a tough one, but I think once I learnt how to handle incontinence, I learnt how to handle my condition without letting it affect me emotionally. 

So let us get comfortable with our poop, our urine, and our bodies. Let us talk about incontinence and being bed-ridden so that these experiences do not have the power to affect our mental and emotional health. And if anyone out there reading this is struggling to get out of their homes, because of unpredictable diarrhoea or lack of a toilet, please give diapers a chance. They are not a perfect solution and can be irritating sometimes, but with a little bit of tweaking and a little bit of planning, they can help you experience the beautiful world outside of your home. 

I’ll leave you with some words from another one of my favourite songs to listen to when I’m feeling down – “Not Afraid” by Eminem.

I'm not afraid, to take a stand

Everybody, come take my hand

We'll walk this road together, through the storm

Whatever weather, cold or warm

Just letting you know that you're not alone

Holla if you feel like you've been down the same road

Thank you for listening to me! Have a good day. :)

My Therapy Journey

“Making mental health a priority in the puzzle of figuring out an IBD or any chronic illness diagnosis is vital to providing holistic health care to patients. ”

— Amy Weider

Having a chronic illness is so hard on the body. The constant pain or fear of pain can consume your life. For me, when I go to the gastro doctor the symptoms that have meant I am doing well are: are my bowel movements regular, can I keep food down and does my stomach feel okay. Through this journey it always felt like a piece of the puzzle was missing. When I was first diagnosed, I was always feeling sad, misunderstood and angsty. When I was going through my first flare ups I noticed I would become more sad and lonely than the usual sad and lonely. Dealing with a chronic illness and body pain is an isolating experience already and on top of it all processing the mental turmoil of diagnosis and life can feel unbearable.  

I first went to therapy when I was 13, three years after my Crohn’s diagnosis. Therapy can be a very overwhelming experience. It is expensive and insurance companies so often make it an even harder process to navigate. The healthcare system in the United States of America is blatantly set up to scare you away from being any sicker than you are and resources for finding mental healthcare can be scarce, especially if you do not live in a big city. Not to mention the societal disapproval of seeking help is so strong. 

After overcoming all these barriers to mental health care and my family hearing and understanding me after stating my need for mental support, my mother and I started the search for a therapist. We were new to this whole therapy thing and were on our own to figure it all out. We failed to acknowledge the many types of therapy and that the styles and process of therapy vary vastly. I have been through my fair share of therapists to say the least. It was hard enough to see one let alone find a therapist whose practices best uplifted my functionality. Especially living in a smaller town, it was hard to find someone who understood the trauma of being a young person with a chronic illness. Many times therapists would reinforce the adult disbelief of my sadness and hurt, an experience all too common with my other doctors. The trauma that comes with disbelief is off putting enough to avoid help. I did indeed find the right therapist for my young self and was able to stabilize my depression and grow comfort and knowledge from my experiences. 

As I grow older, I have much more complexity to my identity. So, it can be more complicated finding a therapist to support me in all my identities. Living in Chicago has helped open a door of resources that include free or sliding scale therapy and group therapy that allows me to work on my depression and anxiety everyday. I have recently found the right process for myself which takes the form of art therapy. It has taught me the ability to harness a practice. Creating something out of fabric is a way in which I am able to culminate anxiety or put importance elsewhere. Physical creation brings clarity to many life situations and it allows me to explore my pain through art. 

Reflecting back, I am so thankful to have parents that heard me when I said I needed help and support from a mental health professional. I needed help processing the bodily trauma that happened in such formative years in my life. Without therapy, there would have been no emphasis on my mental health at my GI doctor’s appointments because it was never addressed. I would have greatly benefited from a psychologist on staff at the gastro doctor or at least a referral after being diagnosed. Making mental health a priority in the puzzle of figuring out an IBD or any chronic illness diagnosis is vital to providing holistic health care to patients.

It's Not Just My Stomach

By Rachel Straining

It’s not just my stomach. 

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It’s the clumps of hair I had to watch fall out in the shower. It’s the fatigue that pulls you under like a crashing wave in the ocean and you have no other choice but to succumb to its current until you’re able to swim to shore. It’s the countless hours spent sitting in waiting rooms and on the cold, scratchy paper of an examination table. It’s being too afraid to eat that one food again, too afraid to go to that one place again, too afraid that it will happen all over again. It’s not just my stomach. 

It’s often just as much mental as it is physical. It’s often just as much whole body as it is, in my case, intestinal. 

I think that’s the thing that a lot of people don’t know about inflammatory bowel disease (IBD). I think that’s the thing that people without it will never know unless we say it - that it affects a lot more than just our “stomachs.”

It’s something that’s hard for others to understand because an invisible illness inherently brings with it invisible side effects that remain unseen. It’s something that’s hard to talk about because there’s this socially constructed stigma around it. That’s why I think that it’s something that we have to talk about, on our own terms, in whatever way we’re comfortable. 

Because the more we do, the more we can break that stigma for ourselves and for anyone else who is silently struggling and feels like they’re alone because no one else is talking about it. The more we make the invisible visible, the more we can gain back that power. The more we bring light to our darkest struggles, the more we can help guide others to see the moon. The more we illuminate the truth, the more we can live it.

Because the thing is, it’s not just our stomachs. And it’s time for people to know that.  

And yeah, there are days when I can put on a fire outfit and a hot red lipstick and stand tall in the face of everything that’s tried to tear me down. But that does not, and will never, take away from the reality of what I’ve gone through and what I’m going through. 

Even when others can’t see it, it’s not just our stomachs. 

It’s the fear of the future and the PTSD of the past. It’s current care and preventative care, needing to keep things under control now while simultaneously trying to make sure things don’t spiral out of control down the line. It’s attempting to gain control over something that can have a mind of its own. 

It’s trying to learn and relearn a body and a soul that are constantly changing, trying to learn and relearn how to live a life that’s continuously evolving with an additional layer of unpredictability. 

It’s knowing how much this disease affects different aspects of your life, but doing your best every day to not let it define your life - to not let it define you. It’s working to foster a kind of acceptance that on some days it just feels like it does. It’s working to foster a kind of belief that on days it feels like it defines your life, it doesn’t mean it will forever. 

Living with IBD brings with it different things for different people. But I think that, at its core, we can all agree that it’s not just our stomachs. We can all agree that everyone is going through something that others may know nothing about. We can all practice a little more empathy and implement a little more kindness because of it.

“The more illuminated the truth, the more we can live ours.”

7 Things You Shouldn’t Say to Someone with IBD

By Samantha Rzany

Photo by cottonbro from Pexels

IBD is a pretty hard thing to deal with. As an invisible illness, people can’t see everything going on inside my body. My body is waging a war against itself and no one can see it when they first look at me. I’ve gotten quite a few reactions when I tell someone about my ulcerative colitis. A lot of people react really well when I tell them, asking about symptoms, what my day-to-day life looks like, what kinds of foods I can and can’t eat, what treatment options there are, etc. But there are always those that suddenly become PhD level experts in digestive diseases as soon as the words IBD are out of my mouth. And these “experts” tell me everything I’m doing wrong. A lot of people just don’t quite know what to say. There’s no right thing to say, there’s nothing that someone can say that is going to cure my IBD. But there are definitely things that people say don’t help. I made a list of the top 7 things you shouldn’t say to someone with IBD. 

7

“Oh I know someone who has IBS! They changed what they ate and felt TOTALLY better!”

Irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) seem similar in nature and they definitely have overlapping symptoms. But they are not the same disease. IBS only involves the colon, does not cause ulcers or lesions in the bowel, and is managed with medications and lifestyle changes such as diet and stress reduction. IBD, however, causes ulcers in the tissue of the digestive track. IBS is a syndrome, while IBD is a disease. IBS does not cause any inflammation, rarely causes hospitalization or surgery, the colon appears free of disease or abnormality during an exam, and there is no increased risk for colon cancer. With IBD, there is destructive inflammation that causes permanent harm to the intestines, the colon is visibly diseased during exams, and there is an increased risk for colon cancer. While both definitely impact daily life, IBD cannot be managed by just lifestyle changes. While people that say they know someone with IBS is trying to relate, it’s not the same. I have IBD and even in remission I still have IBS too. They just aren’t comparable conditions. See the infographic from the Crohn’s and Colitis Foundation for America comparing the two, below!

6

“You should stop eating junk food and try a salad! Your stomach probably just needs a vegetable!”

For some reason, my body does not like to digest a lot of healthy foods. Vegetables with hard rinds, salads, some fruits… my body does not digest it. For the most part, what goes in comes out without it being broken down. The pain associated with eating these foods is often unbearable. Even in remission, I have to eat raw vegetables and roughage sparingly. When I was flaring last year, I couldn’t even have little bits of lettuce on a sandwich. I was a frequent flyer of McDonald’s because, for some reason, I could handle junk food better than I could handle healthy foods. It got to the point where I would do anything to eat a salad. I missed apples and lettuce and cucumbers so much. People often told me it must be nice to just eat junk food and not have to worry about eating healthy. But the junk food I could eat didn’t have the nutrients I needed. And I missed veggies so much. Then there were the people that would tell me my IBD was probably just caused by junk food or could be treated by eating healthy. If eating a salad and never having French fries again meant curing my IBD, I’d do it in a heart beat. Unfortunately, that’s not how it works – and shaming me for eating the few things my body could handle just makes it worse. 

5

“Can’t you hold it? You JUST went to the bathroom!”

No. I can’t hold it. When I was flaring, I was going to the bathroom within 5 minutes of eating anything. I was in the bathroom at least 20 times a day. And when I had to go, I had to go right at that moment. Middle of a store, an exam in class, driving down the road… whatever it was, I had to stop and run to the bathroom. Life would be a lot easier if I could just hold it. And crazy enough, I do know that I just went. That’s part of the disease, though. Frequent and urgent bathroom visits. Sometimes with no warning. Reminding me that I just went and making me feel bad for having to stop what I’m doing doesn’t make things move faster. 

4

“But you were fine yesterday – can’t you just push through it?”

My IBD symptoms change day to day, sometimes even hour to hour. I can commit to plans and have to cancel 5 minutes before. I can look forward to something for weeks, only to feel sick an hour before I’m supposed to go out. And it is the worst. If I can push through it, I do. I made it through college and starting my first job. I was in the hospital for 4 days the first week of my job. I got out on a Monday night, drove two hours to my infusion center to get my first infusion, and then went to work the next morning. There is a lot that I push through. Sometimes, I need to lay in bed and be close to the bathroom and that’s okay. I hate having to cancel plans. I hate feeling so sick that I can’t do the things I was so excited to do. Not being able to push through it does not make me a bad friend or a flaky person. It makes me a wise patient because I know my limits and my body enough to know when I need rest and when to take care of myself. 

3

“Have you tried reducing your stress? Maybe try yoga or something.”

While stress can certainly make my IBD worse, it does not cause it, and reducing stress does not treat it. My life can certainly be high stress. Being diagnosed with a chronic and incurable condition at 20 years old is definitely stressful, but I know how to manage my stress. If some stress-reducing yoga could stop the blood, the pain, the ER visits and hospital stays, and everything else that comes with IBD, I’d make a career out of it. But it’s not that easy. Knowing how to manage stress can help some symptoms during a flare up and help calm things down to a point. Stress management is not a cure for IBD and telling me to stop being stressed makes me more stressed. 

2

“Why are you so tired? You haven’t done anything today.”

This is one of the most frequent things I hear. To an outsider, it’s true. I am absolutely exhausted all the time. I could sleep all day and lay in bed all weekend and go to work Monday morning feeling like I pulled a week full of all-nighters, but that’s what a chronic auto-immune disease will do. I had one doctor explain my fatigue like this: remember how tired you feel when you’re fighting off a cold or the flu? Like no amount of sleep will make you feel awake? You feel achy and worn down and your brain feels like mush? That’s how someone with IBD feels all the time. Instead of their immune system attacking a virus like the flu, it is constantly attacking itself – all day and all night. Those with IBD often have weak immune systems due to the medications they are on, making it more likely to get sick. Our bodies are fighting double just to function the way a healthy body can. So yes, I am tired all the time. I may have slept 14 hours the day before and had two cups of coffee, but I’m still tired and I could always use a nap. I wish I had the energy that a 21 year old should. That would mean I could go out and do what my friends can. However, I have accepted that my body has limitations and I need more sleep than the average person to function at the same level.

1

“Just use oils! You need to stop pumping your body with all that poison!”

I will be the first to tell you, if an essential oil could make my immune system stop attacking itself, I would bathe in it all day and night. Sometimes, oils may help to an extent with headaches or nausea that come as side effects from medications I am on, but no essential oil or combination of oils will ever cure my disease. Of course I wish that something natural would work the way my immunosuppressant infusions do. Even a combination of 6 different medications at once did not help the way my current infusion medication does. It’s scary to have to pump a medication into my body every 6 weeks. Especially a newer medication that we do not know long term effects of. But it’s keeping me healthy and keeping me alive. And shaming me for how I am dealing with my chronic disease is never okay. 

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While all these are things I hear often and things that are definitely frustrating, I know they often come out of a place of not knowing how to respond and wanting to help. The most helpful thing someone can do is be there. Be there when I’m in remission and at my best, and be there when I’m laying in pain on the bathroom floor at my worst. Ask questions. Ask how you can help. Ask what my IBD means for me. Educate yourself. Don’t assume based on things you may have heard or things that work for a friend. In the end, be the kind of friend you’d want if you had IBD.

Why Me? Why Advocacy?

By Rachael Whittemore

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Reading the inspiring stories written by my co-fellows and having conversations about what it means to for each of us to be IBD advocates for young people prompted me to consider the different paths that led us to our roles in advocacy. Each of us have been through times of uncertainty, emotional and physical pain, bowel preps, needle sticks, treatments and more to hopefully get us to remission and the promise of life similar to what we had before we were diagnosed. We have different interests, different educational backgrounds, come from different cultures…maybe we’re even from different countries or different areas of the same country. I know my diagnosis story and IBD journey is different from theirs, and that’s ok, but above all else, we share a bond of navigating life as young people with chronic illness.

By this point, you might be wondering - why advocacy? Before I can answer that question, I have another admission: as much as I felt that I was strong and capable and felt like I took everything in stride, I was angry at the world and at my body when I received my diagnosis (I’m sure many of you can relate!). Even though I have an immediate family member with ulcerative colitis, it felt like everything I knew about the disease went out the window once my diagnosis became a permanent part of my medical record. I took care of myself, was always active, ate healthfully, and yet I still ended up with IBD. I felt like my body had broken up with me. Feelings of shame, exhaustion, and physical disconnection came to color those first few months of living with ulcerative colitis, as I realized I would have to figure out how to navigate something that seemed entirely outside of my control.

I won’t sugar coat things – it really did take a while for me to feel like I had a grasp on what my body was experiencing, and the various things I needed to process that, both emotionally and physically. But in time, with the support of family and close friends (and meds and diet changes), I allowed myself to process my diagnosis and my own lived experience, and as a result, I slowly found ways to get my symptoms under control. Still, one question lingered: what to do next? As much as I was frustrated, I thought about how it’s hard to talk about IBD, often viewed as a “bathroom disease,” with others.  It seemed like it would never be ok for me to openly discuss IBD and I found myself struggling to figure out how to approach the various aspects of my life that were inevitably impacted by it - from social situations to work requirements. At that time, I was working in a medical office to get experience before going to Physician Assistant (PA) school. To me, there was little clarity among the general public about what IBD was, and a lack of resources for those affected. I wanted to find some way to make a difference, even if only at a small level. This is how IBD and patient advocacy suddenly took on a whole new meaning for me.

“Take a deep breath. You can take that next step…”

I did some Google searching and got involved with the Carolina’s Crohn’s and Colitis Foundation (CCF) and got to know others with IBD. I worked on our local planning committee, attended our Take Steps walk to raise awareness and research funding and, while there, noticed how many young people were walking there as patients. My overlapping time working with CCF and learning how to manage my ulcerative colitis shaped my passion for patient advocacy and education. As a future medical provider (graduation coming up in December!), being a patient advocate was especially important to me since I’d spent extra time in my own patient shoes. This has continued as I became involved with CCYAN and as I started my final clinical rotations for PA school this year.

It may seem like my path to IBD advocacy was clearer cut since I’m in the medical field. While I believe my occupation certainly gives me additional perspective, it was really the weight and frustration I experienced as a patient diagnosed with ulcerative colitis that inspired me to take something negative and use it to positively impact others. For some of you, it might take some time to come to terms with your diagnosis or even recover from being diagnosed in the first place. You might have to recoup from surgery, get used to your infusion schedule, or use more courage than you ever anticipated to get past the ongoing medical visits and unpleasant exams we go through as part of our treatment process.

At the end of the day, even if you already feel ready and able to “do something,” give yourself time to reach a healthy place - physically and mentally. From there, think about your hobbies, passions, and the resources you wish you’d had when you were learning to navigate your own IBD journey. Who knows, you might just find your own path to advocacy. Keep in mind, the word “advocacy” itself might seem intimidating, but there’s no need to ascribe undue weight to it. There are so many things, both large and small, that can have an enormous impact on others. It doesn’t matter if it’s starting an IBD group at your school or a blog about your experience. Remember, the internet can be a beautiful thing and there are many ways to share your story and have it heard and supported by people who can both empathize with and learn from your experiences, even if they’re thousands of miles away.

Take a deep breath. You can take that next step – whether it’s learning how to share some of the uncomfortable parts of your story with your friends or beginning to forge your own path as an IBD advocate. Like many of our fellows have said before, this disease is part of you, but it doesn’t have to define you. Even something as small as sharing the #IBDvisible infographic during Crohn’s and Colitis Awareness Week in December can be a great first step to give others insight into your journey and create a space for dialogue where there was none before. I’ve only lived with ulcerative colitis for four years, but in that time I’ve made peace with my “body breakup,” and I’ve learned to be thankful for all of the amazing things I’m still able to do with this body as someone who is so much more than a diagnosis. And, as more time has passed, I’ve gone from the perspective of “why me?” to “why not? Why not make advocacy a part of my IBD journey?” I hope you’ll find that, in time, you can, too.

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Cooking With Colitis: Chicken Noodle Soup

Winter got you down? Watch as Rachael, one of our 2020 fellows, walks you through this soup that's great for cold weather or when you're not feeling 100%. Recipe is posted below and, as always, feel free to change to meet your dietary needs. Don't forget to check us out on our other social media platforms!

The recipe for this yummy meal can be found here:

Extra tips!

• If you have homemade stock or bone broth, that would be a great and nutritious addition. 

• I like to add several handfuls of baby spinach at the end to get some extra greens in there. 

• If you want to make it veg, use veggie stock and omit the chicken. Add any extra veggies you like - greens, white beans, canned tomatoes, etc. 

• Based on your dietary needs, change the recipe as much as you need! The onions, celery, carrots, garlic and oil are a good base for a lot of different soups - the world is your oyster with this recipe. :)

Recipe - 

Ingredients: 

• 1 medium white/yellow onion, chopped 

• 2-3 carrots, chopped

• 3-4 stalks celery, chopped 

• 1 Tbsp each of butter, olive oil - use either or based on dietary needs/preference!

• Pinches of dried thyme, oregano, basil, parsley (or to taste)

• 1-2 bay leaves 

• 2-3 cloves garlic, minced or ~1 tsp garlic powder

• Salt & pepper to taste

• 2 quarts of chicken stock (or homemade if you have it)

• Shredded rotisserie chicken (one small should be plenty)

• Slightly undercooked large egg noodles - use as much as you like, but usually ⅓ to ½ a bag 

Directions: 

1. Heat butter/olive oil at medium heat until hot, then add onion, celery and carrots. 

2. Cook, stirring occasionally until onions and celery start to cook down and become translucent, about 10-15 min or as needed. Add thyme, oregano, garlic (or garlic powder), bay leaves, salt and pepper. 

3. Cook a few minutes more, until everything smells  extra delicious, and add ~1 cup of chicken stock (at least enough to cover the veggies). Bring to  simmer.

4. Bring pot of salted water to boil to cook the egg noodles.  Make sure you underook them a bit by 1-2 min since they will finish cooking in the soup. Rinse/drain. 

5. Add egg noodles to soup mixture and simmer for 10 min. Add shredded chicken, turn heat to low,  and cook for ~5 more minutes or until heated through. 

6. Taste, season more as needed  and remove bay leaves. Congrats, you’re all done. :)

The Pathway to Body Acceptance as a Chronically Ill Person

By Amy Weider

When I was in fourth grade, I was going through the symptoms of my upcoming Crohn’s diagnosis. I was young and did not understand or have the language to explain the pain my body was feeling. While Crohn’s and IBD are invisible illnesses, i.e. one does not look “sick” to a normal passer byer, my constant puking and diarrhea made me lose a significant amount of weight. As a 4th grader this was a bit alarming to my folks, but the general reaction made by my peers and adults around me was to comment on my weight loss and uplift me for it. “You look so much better now” I remember this statement so vividly from a boy in my fourth grade class. “It’s super cool that you finally decided to lose some weight,” someone said to my ten year old body. I was ecstatic to hear this. When you are growing up Femme in a world that encourages you to hate your body and only allows you to idolize those who occupy an able body that wears a size two, it is fitting that this weight loss seemed like a success to me as opposed to a signal that I was chronically ill. I could not differentiate between healthy and skinny, they meant the same to me.

“I could not differentiate between healthy and skinny, they meant the same to me.”

I internalized so many of these comments and the general societal note that any extra amount of weight made me less than. When I was put on prednisone it induced me to gain all the weight back plus more and get “moon face” as well as stunt my growth. As a formally skinny person, I was embarrassed to have this body and it forced me to endure much body dysmorphia because of the quick changes. My mind didn't understand how this was supposedly a healthier version of myself.

When I think back to this time in my life I want to give my ten year old self a big hug. Healing with the body that I inhabit is treating it with the love and respect that I so desperately needed when I was actively a sick young person. My body size continues to change today even in remission. Body dysmorphia and trauma still occupy much of my life. When I was a size two I remember constantly thinking I was fat, now a size ten I do all I can to waste no more days worrying about my size. Acknowledging sizeism and fatphobia allows me to deconstruct and actively tear down these underlooked systems of oppression that taught me to hate myself and other bodies. Today, I know that my body does not even have to be healthy, skinny or pretty for me to love it. I love the way my body takes up space. I accept that my body is sick while simultaneously being an amazing vessel that holds all my thoughts and dreams. Learning radical self love was revolutionary for me and so many others.

“Today, I know that my body does not even have to be healthy, skinny or pretty for me to love it. I love the way my body takes up space.”

People gain and lose weight for SO MANY different reasons, folks with chronic illnesses deal with a fluctuation of weight due to their medicine, hospital visits or general “sick” stress. Even deeper, any kind of body trauma can induce weight loss or gain. Sure, if you are blindly assuming someone is unhealthy because of their weight, it allows you to think very highly of yourself but when we comment on one specific part of the body not the whole person, their whole experience and all the symptoms, your comments are worthless. In general, commenting on other folks’ bodies is a baseless way to assert a dominance on others.

All bodies deserve love! The body positive movement is currently challenging the notion that one specific body is healthy and beautiful and all the other ones must conform. Folks like LIZZO, Megan Jayne Crabbe (@bodyposipanda), Iskra Lawrence, Sonya Renee Taylor (The Body Is Not An Apology) are pushing back everyday by freely and openly loving themselves as a political agenda and are encouraging others to do so as well. Folks with chronic illnesses and disabilities are at the center of this movement and are helping bring nuance and love to it.

“Everyone poops.”

By Samantha Rzany

“Living with an invisible illness is hard. But every time I share my story, the illness becomes a little less invisible to those who take the time to listen.”

As Taro Gomi best said, “Everyone poops”. From a very young age, we became aware that, indeed, everyone does poop. But when I was little, I don’t think I could have imagined just how much I would poop…

I just passed my one year since being diagnosed with Ulcerative Colitis. After a year and a half of countless doctor’s appointments with no real results, I finally had an answer. I had my first colonoscopy the day before finals during my first semester of my senior year of college. The prep was anything but fun, but I went into the procedure not expecting anything to come of it, as had happened so many times before. After the scope, the doctor came into the room. I remember being pretty out of it from the anesthesia. She spent all of five minutes in the room with us, throwing out words like “ulcers”, “irritated”, and “diagnosis”. She told me I had ulcerative colitis, that I needed to schedule a follow up appointment with my regular GI, and that she’d write a script for some suppositories and enemas. At the time, I had no idea what those even were. Little did I know how familiar I’d become with them.

I smiled and nodded, certain that it was a “drink some water, reduce stress, and take some of this medicine” kind of thing - like the gut version of “ice and Advil”. I left the hospital sure that it was another diagnosis thrown around when they’re not really sure what was wrong. Then people started asking how I felt about my new diagnosis. I didn’t know anything about ulcerative colitis. Doctors threw around different diagnoses for the last year and a half of testing, and none of it really meant much. I assumed this was the same.

After a quick Google search in the car ride back to my dorm, I realized that ulcerative colitis was no “quick fix” kind of disease. It was chronic. And there was no cure.

A few weeks later, I had my follow-up appointment with my regular GI. She discussed my treatment plan, explaining that for now I was going to be on topical treatments – the suppositories and enemas – but that there were more aggressive treatments out there. She mentioned steroids and immunosuppressant drugs. She said that she never expected me to even need immunosuppressant medications, so there was no need to do the blood tests required to see if they would be safe for me. I went home feeling much more at peace with the diagnosis – I mean I could handle a few suppositories and enemas twice a day, right?

Over the next two months, I started to get sicker and sicker. I could hardly eat without extreme pain and very frequent bathroom visits. I was eating rice for every meal, since it was all I could tolerate. I eventually started eating baby food too because it was easy on my stomach and gave me the nutrients I needed.

Two ER visits in a span of 3 weeks later, the ER doctor prescribed me Prednisone. We in the IBD community lovingly call this the “Devil’s TicTacs”. The doctor told me he didn’t expect me to be on it for more than two or three weeks – just long enough to treat my flare up. He said I may gain 5 pounds or so, but that they’d fall right back off.

“I eventually started eating baby food too because it was easy on my stomach and gave me the nutrients I needed.”

The next three months were some of the hardest in my life. I was so sick. I was in the ER every couple weeks to get fluids and nutrients that I couldn’t retain on my own. I was having bad side effects from the Prednisone, but it wasn’t making things any better. I was also trying to finish up my last semester of college. Only because of my incredibly understanding and accommodating professors was I able to graduate a year early at the end of April with a degree in Psychology and Leadership.

I switched to a GI through the University of Chicago back home. He said I needed to start receiving immunosuppressant infusions, since I had failed each of the previous medications. We had tried so many times to wean me off the Prednisone and supplement with other oral mediations, and nothing was working.

A few days before I was scheduled to receive my first infusion of Entyvio (the immunosuppressant I chose), I was getting very sick. I spent four days in the hospital receiving high dose IV steroids and lots of nutrients and fluids. I was discharged from the hospital and went straight to the infusion center.

Within 6 weeks, I could tell a huge difference in my health. I was actually getting better. After 5 months and 47 pounds later (guess the ER doc was a little off on that one), I was finally able to get off of Prednisone. In August, I was declared to be in remission.

Since then, I have continued to stay in remission. We increased my infusions to every 6 weeks and I still have symptoms sometimes, but I am so grateful to be doing well.

I have found so much support in the IBD community. Whether it be online support groups, working as the Pilot Director in Illinois for Health Advocacy Summit, having a team for the Crohn’s and Colitis Take Steps Walk, or participating in this fellowship, the amount of love and support I have received is unreal. People I have never even met are the ones I can talk to about any and everything. I have found strength and courage in sharing my story and in reading other’s stories. While all of this support doesn’t cure my IBD or relieve my symptoms, it certainly makes me not feel so alone. Living with an invisible illness is hard. But every time I share my story, the illness becomes a little less invisible to those who take the time to listen.

My IBD Life: Travelling with an Ostomy

By Nikhil Jayswal

Hi everyone!

I hope 2020 has been good for you so far. I am looking forward to a great year ahead. The month of January was packed with many happy moments. The happiest of them was the marriage of my younger brother which happened a few days ago. The wedding was more beautiful than I could’ve ever dreamed and I was overwhelmed with emotions. However, the wedding was also quite a challenge for me. It pushed me to do something I had always been afraid to do and that is what I have decided to share with you in this post.

I have Crohn’s Disease, which unfortunately didn’t respond to any drug. Hence I was given an ileostomy. My stoma saved me, but it did bring with itself a different set of problems to be managed. Travel is one such problem. My stoma is a high-output stoma. I empty my ostomy bag when it is near 90-100% full, which usually happens every 4-5 hours. This poses a problem for me when travelling for more than 2-3 hours.

There are several issues here. I could empty my bag in a public toilet, but there are not many clean public toilets in India. Additionally, people with IBD and/or an ostomy are NOT recognised as disabled. We cannot use accessible toilets which are often much cleaner. Then there’s the taboo associated with poo and the disease and the ostomy bag. Then there’s my slight OCD. :P Because of all these reasons, I’ve never emptied my bag in a public toilet. It has always been my home or a hotel room. When I have to travel, I starve myself for a whole day in advance. It empties my stomach and I travel without worry. It works well for me if the duration of travel is less than 6 hours.

It was a 2-day wedding with a 14 hour long trip to and from the wedding destination. This meant that if I wanted to avoid emptying my pouch on the road, I would have to eat only twice within 5 days. I had never done such a thing before. Doing routine tasks on an empty stomach is very difficult with an ileostomy. This was a wedding! I also had to take care of everything from the groom’s side, which meant that I wouldn't get much sleep or rest. This wedding was going to test my endurance to the limits which made me very anxious.

Somehow, I managed to do it all for three days. But on the fourth day, I ate more than I was supposed to. I was feeling so hungry that I couldn’t stop once I started eating. Also, this was very spicy food which is a big no-no for me. It is a major flare trigger and makes my stoma go nuts. I emptied my pouch before I boarded the bus back home. After 5 hours, my bag was half full. In the next 3 hours, it was 80% full. I was nervous and trying to decide if I could hold out for 6 more hours. After an hour, my bag was full. I knew if I didn’t empty it, a leak would happen. That would make things much much worse for me. So I had to do what I had never done before.

The bus stopped near a restaurant for a short break. I took some wipes, garbage bags, gloves and a fresh pouch with me, and asked my Mom to accompany me. This was the first time I was doing anything like this. I wanted someone to be there to help me in case something went wrong. I tucked a garbage bag in my pants below my stoma and wore gloves. My hands were shaking. After a deep breath, I removed my pouch carefully from the two-piece ostomy system on my stomach and let it fall into the bag. I prayed for my stoma to stay silent for the next 2 minutes. Fortunately, it did. I quickly attached a new pouch and breathed a sigh of relief. I bagged my old pouch twice and then disposed of it. I then had a small meal. My stoma didn’t produce much output for the next 6 hours and by the time I was home, it was only half full. I slept that night with a full stomach which felt very peaceful after the long trip.

I had never done such a thing before, and I probably won’t do it again unless it’s an emergency or a long duration journey. This is an expensive workaround for me. Ostomy bags are not covered by insurance in India. I cannot keep throwing away pouches every 4 hours if I decide to eat during a trip.

I am going back to college after a week. It is a 2.5-hour flight. Adding the time required for travelling to and from the airport and the check-in process, I will need a quiet stoma for 6-8 hours. Hence, I will be starving myself for a day beforehand. Later in May, I have to travel from New Delhi to Chicago for Digestive Disease Week. The travel time is around 24 hours. I will be starving myself for a day again. However, I am planning to eat during the flight. I’ll replace my pouch either during the layover or mid-flight.

Having IBD with an ostomy creates many difficulties for me. Depending on my intestine’s reaction to the food I’m eating, my stoma activity varies. This uncertainty is difficult to deal with. Every time I travel, I wish there were cleaner toilets that I could use. Every time I travel, I fear leaks, because I don’t know what I’d do if one happens. I also wonder if people will be kind to me. Travel was stressful for me even when I didn’t have an ostomy and relied on diapers. I couldn’t change diapers everywhere. I feared the looks I would get from people if I did it in a public toilet. The lack of proper sanitation facilities for the IBD population creates so much distress that many young people do not leave their homes and stop socializing. This seclusion further leads to depression.

In India, being a young adult with IBD is a challenge. Most of us compromise on many other aspects of our life just to be able to work or study. As for travel, I think if we are allowed to use accessible toilets, things will be much easier for us. It will permit us to live a more fulfilling life.

I don’t like ending things on a sad note, which is why I generally refrain from sharing my story. As I share my struggles with you, I’d hate to leave you feeling disappointed. So I’ll leave you with a few words from “Beautiful Pain” by Eminem. These words often inspire me when I am disappointed. I hope they inspire you too.

I'm standing in the flames

It's a beautiful kind of pain

Setting fire to yesterday

Find the light, find the light, find the light

Thank you for listening to me. Have a good day! :)

What I Wish I Could Have Told My Newly Diagnosed Self

By Rachel Straining

Hey. I know you’re feeling a lot of emotions right now, a lot of emotions that might not make sense for a while. You probably don’t want to listen to anything else because you feel like you’re drowning in new words and the world you once knew is breaking into pieces. But I need you to do something for me. I need you to breathe. And I need you to listen.

Let’s take a deep breath, okay? I know your heart is racing as fast as the thoughts that consume your mind, but let’s just try to breathe in, and breathe out. It’ll help. Hold onto that practice. It’ll come in handy.

Before you freak out and your mind starts spinning in a million different directions, find that steady breathe again, and just hear me out.

Your life is going to change, but you’re going to be okay.

Your life is going to change, but not entirely in the way that you think.

Honestly, yeah. There are some things that are going to change for the worse. It wouldn’t be fair to lie to you. It’s not right to sugarcoat it, because that’s not reality, and that’s not how you’re going to grow. You’re not going to grow by shying away from the hard stuff. It’s going to suck sometimes. There will be a lot of doctor visits, a lot of doctor changes until you find one who will believe and listen to you. There will be a lot of you being your own doctor and especially your own advocate. There will be a lot of tests run, a lot of blood drawn, a lot of nights and days spent in the bathroom or in bed.

But amidst the pain and the tears, and amongst the ways in which, yes, your life will get harder, here’s what will get stronger: You. Your bravery. Your resiliency. Your power. Your appreciation for life. Your ability to empathize with others. Your knowledge about and intuition towards your body. YOUR body.

So, with that in mind, here are a few things I need you to know:

At first, you may feel like you’re the only person in the world who has this disease. You’re not, I promise. There is an entire community out there of other people your age who are fighting the same battles, who understand what you’re going through because they’re going through it, too. Please don’t wait to find them.

Listen to your mom. She will almost always be right, even when you don’t want to admit it.

You are stronger than you even know and you will grow stronger every day, even when it doesn’t feel like it. That unrelenting strength will be right there, right inside of you.

Your past isn’t your present and your present isn’t your future.

Your bad days don’t equal a bad life. Your bad days are not forever.

You are going to cry and you are going to need to cry. Let yourself ride the waves and feel it all because keeping it hidden or bottled up will only make things worse.

You are going to need rest and you are not weak because of it.

You are going to have to give yourself grace through it all. It’s the only way. You are going to have to learn how to be kind, gentle, and patient with yourself.

Remember to breathe.

Find something every day to be thankful for, even when it’s hard.

You are not any less deserving of love because you have a chronic illness.

Do not settle for anything or anyone’s opinion.

You are not an inconvenience or a burden.

You can’t compare your health or your journey to anyone’s else’s.

You can’t put a timestamp on healing. Healing doesn’t happen on straight timeline and it doesn’t have a set end date. It’s complicated and hard and messy as heck. Putting in the work and putting yourself and your health first will always be worth it.

You know your body better than anyone else. You are going to have to fight for it.

You will often have to separate to elevate - from certain people, from negativity, from anything that holds you back and holds you down.

Your thoughts hold great power; thoughts become things if you let them. Both positive and negative.

Your chronic illness is an important part of who you are and what shapes you, but it does not define you.

Your story is worth sharing. Your voice deserves to be heard.

Your pain will become your power.

I guess what I’m trying to say is this: you’re going to go through a lot, but you’re going to learn from it and grow from it. You’re going to fight through it because that’s what warriors do. There will be days when you’ll feel so angry that you have this disease that all you can do is go to bed and hope tomorrow will be better. But there will also be days when that hope for a better tomorrow seems to finally exist in the present, when the anger starts to fade into the background and you feel like you can not only handle but conquer this life you’ve been given. This life is going to be good and bad and everything in between and you’re going to make it through.

I just wanted to tell you that.

Piecing Together My Chronic Illness Puzzle

By Grady Stewart

Photo by Hans-Peter Gauster on Unsplash

“There’s the me who existed before I was diagnosed with ulcerative colitis, and there’s the me who is living now after my diagnosis.”

There’s this fuzzy feeling that sticks to me sometimes when I think about the past. It’s especially prominent when I reflect on dusty memories wedged in time between late 2015, the season of my diagnosis with Ulcerative Colitis, and today. It’s sticky, soft, and sickly sweet like an overripe peach turning into a goopy marinade. It’s not an unpleasant feeling, or even unfamiliar. It flows through my body, sending tingly waves crashing through my veins, and turning all of my nerves to spiderwebs. In these periods of reflection, I feel incredibly present and grounded, yet out of place. The clips of my life are lifted out of their slots, and thrown into a random order.

Poetry aside, it’s hard to explain why I feel so odd when I think about who I was in the past. Maybe it’s melancholy. Maybe it’s nostalgia. If you ask me, it’s my body’s autoimmune reaction to change. It turns out I’m allergic to more than just seasonal pollen. When you live with a chronic illness, from the moment you’re diagnosed, the world becomes more chaotic. When I woke up from my initial colonoscopy, everything was spinning around me. That could have been the result of the anesthesia wearing off. However, it was also the first time I stopped recognizing my own body.

To go from being healthy to sick forever is a gigantic change. It’s looking into a murky puddle and seeing ripples rippling your reflection apart. You’re still the same person, but in that instant, you’re completely different too. An experience like that is enough to send anyone into a tailspin. On top of all that, when you’re diagnosed with IBD, everything else in your life seems to start changing more frequently and much faster. You change doctors. You change medications. You change diets. Sometimes, even your friends change.

You change so much when you’re chronically ill and the rest of your life starts to feel unfamiliar. Most people go through several periods in their lives. They have a childhood, teenage years, young adulthood, adulthood, and older age. I’m working my way through those life periods too. However, the difference is that change has shattered the stages of my life into two fragments. There’s the me who existed before I was diagnosed with ulcerative colitis, and there’s the me who is living now after my diagnosis. As a result, my past and present selves feel disconnected. The puzzle pieces of my life don’t quite fit together. There’s too many corner pieces, and not enough patchy centerpieces.

I’m learning to accept the changes that have changed my life and the changes that I can’t control. I am different from who I was, but I’m proud of who I am, and who I am becoming. Living with a chronic illness isn’t easy, and accepting a new life isn’t any easier. It means giving up on normal. It means embracing imperfect, and living with the unexpected. Over time, I’ve learned that isn’t failure or an insurmountable obstacle. Change has forced me to grow, to learn, and to adapt. I’ve met new friends, and I’ve accomplished things that I never thought were possible in the past. Acceptance isn’t a solid thing, it's a fluid and evolving process. Today, I’m less concerned about the pieces of my story being perfect. Instead, I’m happy to have a jumbled pile of pieces to put together in my own weird and unique way.

Besides, who wants to be normal anyway?

Coming to Terms with Crohn's

By Simon Stones

“This year marks twelve years since I received my diagnosis, and it is true that time is a great healer.”

Life has a funny way of teaching us many things. It presents us with a number of challenges along the uphill journey, though some people get more than their fair share. As a child, it’s sometimes difficult to understand why you’ve been so unlucky. “What have I done to deserve this?” Having lived with juvenile arthritis from the age of three, I had grown up knowing nothing else but hospitals, treatment and pain – making me feel different than everyone else.

At the age of 12, I began to develop some new bowel-related symptoms, which were largely ignored or overlooked. My mum fought over twelve months to get me referred to a paediatric gastroenterologist, since she knew there was something seriously wrong. I was dealing with excruciating abdominal pain, the embarrassment of having to run out of class to go to the bathroom, and I had a genuine fear of having to use the public toilets in school. Despite the in-depth description of symptoms to my local doctor and hospital specialists, I was repeatedly told that the only thing wrong with me was constipation. Instead of further investigations, I was prescribed laxatives, which only made matters worse.

My mum had repeatedly asked for a colonoscopy and gastroscopy to be done to rule anything out, to little avail. Mum had diverticulitis, a condition characterised by infection or inflammation of pouches that can form in your intestines. Since some of the symptoms were similar, we began to wonder whether I had the same condition. I had been more or less guaranteed that it wouldn’t be Crohn’s disease or ulcerative colitis, since I wasn’t a typical patient – what even is one of those!?

After many more months of fighting for an answer, I finally saw a paediatric gastroenterologist who decided to investigate using a colonoscopy and gastroscopy. Again, he seemed quite certain that it wasn’t ulcerative colitis or Crohn’s disease, given that my weight had been fairly stable, and my inflammatory markers hadn’t changed significantly, bearing in mind they were already elevated – but that was put down to the arthritis. I don’t think the healthcare professionals meant to make me feel this way, but I had begun to question whether it was all in my head. Nobody seemed to believe what I was experiencing, except my mum and dad, which is really hard to deal with. It certainly dented my confidence.

The day for the camera investigations arrived. It was Monday 21st April 2008. I hadn’t packed a bag as the plan was a day case admission for the camera investigations under general anaesthetic. For me, the worst part of the colonoscopy was definitely the bowel preparation you have to take – I feel nauseous just thinking about it! I still struggle getting the stuff down now for follow-up colonoscopies! So, I walked down to theatre, the anaesthetic was injected into my veins and I quickly drifted off. The earliest memories I have after the camera investigations was feeling incredibly sore (presumably where the biopsies had been taken), and I was lay in bed in a side room, with my parents by my side. Very shortly after, I remember the consultant coming into the room, before sitting on the side of the bed.

---

You know there’s bad news when somebody looks at you, tilts their head, and then sits down. “Simon, I’m so very sorry…” Before he had chance to finish his sentence, every worst possible thought came rushing into my head. “I never expected to find what I have found – it took us all by surprise.” He then told me that I had Crohn’s disease, and went onto say that as well severe inflammation and ulceration throughout my intestine, my entire oesophagus and stomach was inflamed and ulcerated too. After further descriptions, he finished by saying, “I’m sorry that we didn’t believe you.” After years of suffering, someone had finally listened to me. Despite the diagnosis, I was so relieved. I wasn’t going mad.

That relief, unfortunately, was short-lived. On the night when I was diagnosed, my parents had left briefly to eat. I was in a side-room, shut off from the rest of the world. All of a sudden, a wave of grief came over me, and I burst out crying. The thought –of having this disease for the rest of my life terrified me. Having read about Crohn’s during my fight for a diagnosis, I had read of so many people requiring surgery and ostomies as a result of Crohn’s disease, and this really did frighten me. Sadly, I didn’t know all what I knew now.

“After years of suffering, someone had finally listened to me.”

Treatment began almost immediately, and I had to stop injecting the biological treatment for my arthritis, since it had been ‘masking’ the Crohn’s disease. My doctor also instructed me to start a polymeric diet, which is a special liquid diet consisting of daily nutrient-packed milkshake-like drinks that I would need to take for eight weeks.

Each bottle was 250 ml, and based on my weight at the time, I was told I would need eight of these a day – that’s two litres of the stuff! This was also on the presumption that I would not eat or drink anything else but water for that period. I managed day one, and then struggled trying to get all of these drinks down. I thought it would be a doddle drinking these ‘chocolate and strawberry-flavoured milkshakes’ – but it wasn’t! It became even more tormenting when I returned to school on this polymeric diet, still feeling ill, and watching everyone else eat and go about their daily lives normally. I wasn’t ready to be back at school – physically and mentally, so I went back home and was home tutored for a couple of months.

As time went by, the polymeric diet did its job, and enabled my digestive system to rest. I tried to observe patterns in foods which seemed to make me worse, but other than green salads, vegetables and spicy foods, I couldn’t identify much else. Over the years, Crohn’s disease has just become another part of my life. After diagnosis, I tried to find out as much information as possible, though I didn’t have the opportunity to meet and chat with other young people living with Crohn’s disease or ulcerative colitis, which was a real shame.

This year marks twelve years since I received my diagnosis, and it is true that time is a great healer. I’ve never forgotten, nor will I ever forget, the pain and trials that I have faced because of Crohn’s disease, alongside my other health problems. However, I have learned to live with my conditions, getting on with what I want to achieve in the way I want to do so. Sometimes, it’s not easy, and there are times when it sometimes feels too much, but you do get there. As life has taught me in many ways, it can be incredibly short, and there are so many others who are worse off than me. So, if I can do something, I will, and I’ll do it with all my heart!

Reflections on Being Diagnosed with a Chronic Illness as a Child

By Leah Clark

When I was twelve years old, I was diagnosed with Crohn’s disease. From personal experience, I believe that being diagnosed at a young age can be seen as a blessing and a curse. Of course I am partially biased; I don’t want to go through my life wishing that I had been diagnosed at a later age. There is literally nothing that can be done to change that. With that, let’s start with the bad news about being young and diagnosed with a chronic illness. At the time, I didn’t fully understand what what was going on half the time. I remember feeling healthy, and then all of a sudden, I was feeling awful all the time. I would could home from school exhausted; I barely ate anything because everything made my stomach hurt. It wasn’t like a normal cold with the sniffles and running nose. That I could recognize, but these new painful experiences were different, and I didn’t know what was going on until I finally went to the doctor.

Reflecting now, I realize what else was going on, apart from getting Crohn’s disease. Part of my childhood was taken away from me, and that’s a pretty big statement. A part of my childhood was not lived because I was too sick to live it. While other kids my age were able to go to pizza parties and stay up late at sleepovers, I literally was too exhausted to keep up. Along with Crohn’s, I was also diagnosed with Celiac disease, so I can’t eat gluten anymore. Not only was I that sick pale girl with bathroom problems, I also couldn’t eat half of the diet a normal child eats. No chicken nuggets and pizza rolls. I had to bring my own snacks when it was someone’s birthday at school. This was also a time before the gluten free diet fads exploded the industry, so there were not many options for me that didn’t include basic foods. You never realize how integral food is in American culture until you can’t eat it anymore.

“A part of my childhood was not lived because I was too sick to live it.”

Aside from missing out on those experiences, I also missed out on social and developmental aspects. For example, in my middle school, there were a lot of tall, athletic girls and boys that participated in volleyball, basketball, tennis, track, cross country, so on and so on throughout the year. Sure, middle school sports aren’t really that much in terms of importance, but at that age, sports signified a time to spend two hours with your friends outside of the classroom. I wanted to be part of that. I didn’t want to miss out on what my friends talked about, who they were talking to, all the hot gossip. You know, typical middle school things. However, I was not good at sports, like, at all. While all my other friends were growing up, getting taller and having fun actually being good at sports, I was not. I was malnourished for so long that I skipped that part of purperty. In fact, I’m still the same height that I was in 8th grade, 5’2. Maybe this is why I don’t like participating in sports even to this day. I feel like I don’t “fit in” in the activity, and I sometimes still get angry that I can’t be better at them.

Anyways, the point I’m trying to make is not that I was bad at sports when I was younger, or that I couldn’t eat birthday cake with everyone. The point I’m trying to make is that I was deprived of childhood experiences that I would consider vital in growing up. Some days, I wish that I had a different childhood; I wish I wasn’t diagnosed when I was so young. It brought not only sadness into my life, but a lot of anger, for a long time. I was forced to grow up faster than my classmates. Heck, I understood how healthcare worked at the age of 14. But, it’s frustrating to be a child and not understand why bad things are happening to you for no reason. For awhile, I felt like I was being punished for something. Why do bad things happen to a good people? Am I a bad person? It took so long for me to realize that sometimes, life sucks, and sometimes good people get sick.

The picture on the left is my 6th grade school photo. My face was thin. I hated smiling. I felt like a ghost being trapped in a body I didn’t recognize. The picture on the right was taken this summer, almost ten years after the other. It’s safe to say I don’t feel that way anymore.

That being said, being diagnosed at a young age was also a blessing in disguise because I was an impressionable pre-teen and able to adapt to my new lifestyle of having a chronic illness in the same way I adapted to other major changes in my life (puperty, middle school, etc). I thought of it as, “Well, I guess this is a thing now,” and I just accepted it as my new life. It wasn’t until later when I would look back on my life that I realized I had experienced some pretty tough things. Of course, I didn’t love it at the time. Who would love having to explain to all your classmates why your face looks like an inflated balloon from prednisone? Or why you have to skip school to go to the doctor’s office for infusions every few weeks? I was lucky enough to go into remission fairly quickly after diagnosis, and (most) classmates did not even discuss my disease with me because it wasn’t affecting my day to day life. I have spent almost half of my entire life living with Crohn’s disease. I know tricks to help with flares. I’ve had years of experience in learning what foods affect my body. Yes, it has been a learning process, but as I grow older, I will be gaining more and more knowledge on how to handle my disease. I learn more about myself and what kind of person I want to be everyday. These experiences, though rough, have shaped me into the person I am today.

I was able to adapt to my new lifestyle of having a chronic illness in the same way I adapted to other changes in my life. I thought of it as, “Well, I guess this is a thing now,” and I accepted it as my new life.

The one thing about being diagnosed at a young age that outshines all the rest is the fact that I have met so many wonderful people with the same disease as me. I was diagnosed in the summer of 2009, and that same summer was the year my parents sent me to a summer camp for kids with inflammatory bowel diseases. I was a camper there every year from then on for six years and was fortunate enough to be a counselor for four years after. It was such a joy to meet kids my age that knew exactly what I was dealing with. We were able to share stories, give eachother advice on how to handle our illnesses, and just spend a week being a “normal” camper. I am happy to have been diagnosed at a young age, because I was able to meet other kids that were diagnosed at a young age, too. It’s a special bond. I have made lasting friendships with mnay people, and it has been an amazing journey. I understand not everyone diagnosed at a young age was able to meet people their age with their illness. IBD can be a very isolating disease, but the thing I find to be one of the best things about my illness is the community established from it. A good support system can honestly be the difference in someone’s life that changes how they look at their disease. I know for me, just the fact of knowing there were other kids like me, helped me so much with my when I was younger.

If I could give just one piece of advice to someone with IBD, it would be to establish a support system. If you haven’t met anyone that has IBD, I encourage you to seek them out. Whether that be a club on your college campus, a support group in your town, or even online, meeting other people will similiar experiences with you can be se rewarding. I was fortunate enough to establish these relationships at such a young age, and for that, I am grateful to have been diagnosed with my chronic illness as a child.

New Year's Resolutions from a Fellow Crohnie

By Erin Ard

Living a life with inflammatory bowel disease is in one word, unpredictable. For Crohn's disease, you pretty much do what you can to control the inflammation in your body by controlling your food intake and working with your gastroenterologist on what treatment methods to use. Not to mention, dealing with any other additional complications or side effects. I was diagnosed with Crohn's disease 10 years ago now and I've learned a lot about strength, resiliency, and the imperfection of the human body. Since my diagnosis, I've learned a lot about my body and my disease including how to accept all of its flaws. But because reality tells me I will deal with this disease for the rest of my life, my journey with Crohn’s is not over yet so there is still so much more to learn.

My journey with Crohn's started back in high school and honestly, I had no idea what would be in store for me. When I was finally sent to see a specialist, we would drive over an hour to my gastroenterology appointments. I started out taking mercaptopurine to suppress my immune system but quickly advanced to Remicade as a long-term treatment. On Remicade, I finally felt like myself again – at least a version of myself with additional manifestations of my Crohn's. The joint pain and short-lived fevers still persist, even today. It has been 8 years since I started on Remicade and a lot has happened over those years. I finished high school, moved away from home, and started college at the University of Wisconsin - Madison. Since starting college I've learned a lot more about myself as an individual and how Crohn's affects my life as a whole. In fact, it has changed since I was diagnosed and achieved remission the first time around.

I moved through the years mostly symptom-free. With only the rare stomach ache, but still able to maintain your daily routines. I knew precisely how my daily life would change if my disease was active. I valued the time I had thinking I could eat what I wanted without repercussion or go on a long run without my joint pain forcing me to limp the remaining distance. When your Crohn's is in remission, you have the freedom to eat delicious - maybe not so Crohn's-compliant - foods. You may even plan travel trips into your year with minimized anxiety of having an episode. I had the freedom to do all of these things! Since 2019 started, I tackled my vision board ideas by cooking more from scratch, trying out healthy recipes in my Insta Pot, and booking my first flight on a plane! Followed by several more flights to exciting new locations I hadn’t dreamed of experiencing because of the travel-anxiety instilled by my Crohn’s. For a woman in her early 20s with Crohn’s disease, I was crushing it! Then a few reality checks later, the unpredictability of IBD set in and I learned an important lesson. That no matter how far into remission you've gotten, odds are you might flare-up again in the future.

Photo by Evie Shaffer from Pexels

This sad truth is where I found myself recently. For the last few months, I've felt pretty off. I was getting more frequent belly pains, indigestion, irregular bowel movements, and my joints were starting to bother me more. I had originally attributed all of my symptoms to not eating well, which was a naïve thing to believe.. In retrospect, I had been struggling to stay in remission for the past couple of years. With the way that Remicade infusions worked over my 8 week time period, I would started getting symptoms again around week 7. That last week was a familiar struggle which included neglecting some of my responsibilities at school. I would end up skipping a class here or calling into work there - each pretty understandable given the circumstances but I still regretted having to do. About a year ago I went in for another colonoscopy (my third so far) because of these recurring symptoms and because my last one was towards the beginning of my diagnosis. The results didn't come back perfect, of course. They found some inflammation in my distal colon and the opening to my small intestine, which would explain my irregularity, stomach pain, and indigestion. I was told my gastroenterologist would be in touch to discuss what my next steps would be. After that visit, everything concerning my disease went on hold for awhile. In other words, life happened. My obligations for school and work started to take over my free time. Being the Crohnie I am, my limited will power from the fatigue would have me put the small tasks off until the following day. Meaning my health was put on a back-burner because they would always be put off until the “next day.” I was still receiving infusions every 8 weeks and conquering through my days, so I didn’t jeopardize my self-efficacy. I felt able to accomplish whatever I set my mind on. Eventually I started to wonder what my prognosis would turn into if I continued living this way. So I finally scheduled that appointment, this time with the gastroenterologist that performed my last colonoscopy.

Since I've started this fellowship with #CCYAN - the Crohn's and Colitis Young Adults Network, I've read so much about other people's experience and learned the expansive symptomology of inflammatory bowel disease in other bodies. Since the start of the year I realized how crucial it is to maintain your disease to prevent complications or necessary surgery in the future. Heading into the new year, my new outlook will be focused on achieving remission and maintaining a healthy body, any way I can. Let me share with you what my Crohn’s-related New Year’s resolutions are for 2020..

Learn to accept the unpredictable.

The first resolution I’d like to explore more is in how I think. Because Crohn’s can be so unpredictable, accepting this as a fact of the disease may help uncontrollable events feel less traumatizing. When you can learn to seek solutions or simply see the positive rather drowning in the self pity, loathing, disgust or whatever you might feel, you will feel a bit more at ease. It takes so much energy worrying about what "could" happen in the future. Like what "might" happen if you venture away from the privacy of your home and go to the movies today. Or "if" you might have the urge to go on an airplane while the bathroom is busy. Or "if" you don't make it to the toilet on time. Events like these are bound to happen and throw you for a loop if you aren't prepared. I should clarify that learning to how to accept and not worry about the future doesn't necessarily mean you shouldn't prepare for anything and everything. Because the first thing we all learn with IBD is that preparation is key to surviving any traumatic bathroom incident!

To take initiative when it comes to my well-being and body's health.

The second resolution involves how take action when Crohn’s is clearly affecting my body. My bad habits of binge-eating sugary treats or ordering high-fat take-out when I’m not feeling well starts to become routine when I don’t take responsibility for some of the fall out. I’d like to learn how to better take initiative to prevent consequences or make the most of my recovery. This means staying in close contact with my gastroenterologist about any trouble I’m having, not eating foods I know will quarantine me in the bathroom the next day, and keeping track of my symptoms, as tedious as that might be.

Recently I received not-so-great news from my gastroenterologist and it felt like my world was collapsing. After I took a calprotectin test which showed an adequate amount of inflammation, she told me that my Crohn's was flaring up again. It took me a bit to realize that what I was experiencing was actually long-lived. I had started getting symptoms months prior and it took me too long to get back on track. Something simple that could have helped me notice something sooner would have been a food log, which unfortunately, I don't have a lot of experience in carrying out. However, I do see their value and hope that this next year I can explore this path and hone in on what my exact food triggers are and how my body changes throughout the year. If you are now interested in doing the same, see this article on How to Use a Food Diary to Help Manage Crohn’s Symptoms and Flares from Everyday Health. I might not go as far as weighing my food, but at least I will get an idea of what food leads to which symptom.

My disease will change as much as I do.

This is one thing I needed to accept my disease started to flare up again. I was caught up in the idea that I had achieved remission and that everything would stay relatively constant. I just couldn’t see myself going through what I had in high school again, when my Crohn’s had surfaced. Since then it’s been a constant flow and I tried to push any thought that the disease would hold me back aside - which was an advantage for the time-being. However, this also kept me from growing because I just shut everything out. I wasn’t able to harness the power of vulnerability in having an illness to accept myself as I am and love my body.

After spending the last 8+ years in remission, with only some minor episodes, finding out my disease was flaring up again came as a shock to me. I've noticed that I'm the type of person who is apprehensive around big life changes. I like how things are going, I am comfortable with how everything is, and if I have to suffer through it a little, I am fine with that. However, this kind of mindset wouldn't suffice anymore and I've been realizing that more and more every day. My doctor and I have been working hard to put my disease back into remission. I'm trying some new medication out and taking everything new in day by day. IBD is so specific to every person, so how it presents itself or progresses is going to look different in all of us. And as all of us grow into young adults and beyond, our disease will change over time as well. For the better, or not so much.

My body will do some weird things, just learn to go with it.

You would think having to deal with gut pain would be enough, but there are so many other things that can factor in! The most common list of symptoms for Crohn's disease include abdominal pain, diarrhea, and fatigue. But the lesser known, indirectly related symptoms should also include weird noises, smells, urgency and accidents. Your gut will make loud gas-y noises while it’s quiet in the office. You will have to take frequent, unexpected breaks when the urgency gets the better of you. And the unfortunate reality is that sometimes, you won't make it to the bathroom in time.

The most healing part of my being more vulnerable this past year, was accepting these symptoms as they were instead of trying to control them. Because when I’d try to control them, I would get gut upset, constipation, or even more uncomfortable. I eventually started to tell people that yes, I have had accidents in the past and brushed this confession off like it was normal. Humor always goes a long way in these situations. Because of the healing I’ve already had, I want to pursue this resolution in 2020 as well to see my body’s flaws in a new light.

My hope is that you will find some inspiration to create your own list of resolutions for yourself. Whether they are similar to mine or completely different! Join me in making a resolution list for yourself this year and we can both actively improve our life with IBD together!

Starting a Healthy Relationship with Food

By Erin Ard

What should I eat during a flare-up? What should I eat to stay trim? What should I eat to be healthy? What even CAN I eat? Every day I'm plagued with these questions. Even more aggravating, none of which have an easy, clear-cut answer. But having had experience fumbling over meal-planning and studying nutrition, I've learned how to better navigate my eating habits.

Planning and preparing healthy meals for yourself can be an exhausting, time-consuming, and sometimes expensive, process - especially for college students. Now if you throw in food allergies, intolerance, or chronic illness this process can get MORE complicated! Having inflammatory bowel disease (IBD), myself, I know how challenging it is to eat healthy within your own food restrictions; especially if you don't have a good understanding of nutrition, gastrointestinal disease, or what your restrictions are! My disease has been in remission for several years now, so my food limitations aren't as strict as someone having a flare-up, and I still have trouble. For those who are new to the game, IBD is a class of autoimmune diseases that causes inflammation along the GI tract when the disease is active, and can hinder nutrient absorption. With Crohn's disease, a common form of IBD, there is no specific diet to follow to control symptoms. This is probably the most annoying thing you've read today, but I better let you know now.. According to the Academy of Nutrition and Dietetics, we only know of foods to avoid - foods like dairy, high fiber grains, alcohol and certain spices, since these tend to aggravate an inflamed bowel.

Being the nutrition major I am, I get to learn about the Dietary Guidelines for Americans (DGAs). These are a great resource for curious readers wanting to eat healthy and live an active lifestyle. They lay out simple and easy recommendations to help prevent chronic illness, e.g. diabetes or obesity. These illnesses have become more and more prominent in the U.S. and have direct ties with diet. But what about the many other nutrition-related diseases with not-so straightforward ties? Unfortunately, the DGAs aren't designed for all bodies. The research used to develop the recommendations use “healthy” test subjects, of course, not those with chronic illness already. If you have a chronic illness, you’ll need to take extra care to find your ideal, health promoting diet. Better start doing some research yourself or see a registered dietitian! Or try out this idea you've probably never heard before, a food diary! …

Taking extra care in regards to your diet is especially important with IBD. In Crohn's disease specifically, inflammation along the digestive tract can cause nutrient deficiency. Inflammation hinders absorption of important nutrients, vitamins, and minerals; putting you at a higher risk of malnutrition than your healthy roommate. Eating the right nutrient-rich foods and eating enough of these foods can make-or-break living healthy with IBD. All of this in mind, the DGAs are still an easy “go-to” to help you learn about what makes up a balanced meal and why. In the rest of this article, I want to help you navigate the DGAs and share my own troubles with forming healthy eating habits.

Navigating the Dietary Guidelines for Americans with IBD

When comparing the DGAs and what is good or bad for a person with the common IBD form of Crohn’s disease, there are a few noteworthy similarities. For instance, limiting saturated or trans fats, simple or added sugars, sodium and alcohol are wise choices for everyone. They also seem to focus on getting a variety of vegetable and protein choices, emphasize fiber, and recommend lower fat options for dairy. Here you need to be careful. As noted before, certain sources of fiber can hurt a person with active disease. In other cases, fiber can be very beneficial for a person with Crohn’s to add fecal bulk, when the disease is in remission (i.e. under control or without symptoms). It's important for you to understand what foods are necessary for a well-balanced diet and what foods impact your disease management. The DGAs give a great outline, but your personal nutrition plan should have the final say in deciding what to make for dinner.

Dietary Guidelines for Americans 2015-2020

1. Follow a healthy eating pattern across the lifespan.

2. Focus on variety, nutrient density, and amount.

3. Limit calories from added sugars and saturated fats and reduce sodium intake.

4. Shift to healthier food and beverage choices.

5. Support healthy eating patterns for all.

My Relationship with Food

All of this information I have outlined is great and all, but I haven't touched on the emotional aspects of eating yet. Eating is heavily tied to the emotions I experience in a day. My mind bounces back and forth so much in a day when I think about food, eating, how I feel, how my gut feels, how much time I have before my next class, and whether I even have the energy to fix a meal up.

I eat when I’m sad and eat when I'm happy. I'll make a great meal to celebrate an accomplishment or make comfort food if my gut hurts. If I have an important event to attend, I will forego eating entirely to prevent symptoms. If I’m sad or stressed enough, I will also not eat, and wallow in my own pity. It’s confusing and raw, and I don’t understand my eating habits most of the time. Like I said, eating is a heavily influenced by my emotions, so how I feel about my Crohn's or about myself will impact what and if I eat anything. Unfortunately, I've discovered that a majority of emotions I experience will have me make bad decisions about food. But pausing to understand why I make these decisions and what fuels these emotions, has helped me to better understand myself. All of this aside, I love making food.

Striving for Progress

I used to have so many misconceptions about food. The biggest misconception I had to overcome was what I needed to eat to be healthy and what I should eat to look good. As a teen and throughout college, I was more absorbed in looking good, being thin, and keeping belly small. Not maximizing my nutrient intake by eating whole foods and managing my disease resurgence.

I used to be influenced by fads and testimonials - "stay away from dairy for clear skin", "stay away from breads and pasta and sugars to shrink your belly", etc. Everything affected me. Every headline I saw or piece of information I was told. Any advice I was given. Everything I interacted with tried to influence my thoughts, opinions, actions, and lifestyle. Here I thought I was being educated. I never realized I was depriving myself more than helping.

What I’ve been learning is that nutrition is not black and white. The world will try to convince you that there are foods you should not eat for X and foods you absolutely need for Y health benefits. Sadly, this isn’t true. There isn’t one perfect diet plan out there for everyone or for XYZ benefits. Nutrition is much more complicated than that.

With all of this in mind, I would say that right now, I have the healthiest relationship with food I've had in a long time. Studying nutrition was a major player, but I also must give credit to being mindful every day. Being mindful of my cravings and urges has helped me stay away from flare-triggering foods. And I make progress each day deconstructing any false beliefs on what I see as a "healthy" food for me.

My message to you is to educate yourself, learn about food, learn what foods you tolerate, and strive for a healthy relationship with food.

Doing the imPOSSIBLE while living with IBD

By Andi Nowakowski

Limitations and sacrifice are an unfortunate aspect of living with a chronic condition, which is why I was very excited when, this summer, I was able to take part in an activity I’ve been wanting to do for a long time; I donated blood.

It may not sound like much, but between the numerous immunosuppressants I take on a daily basis, my Crohn’s disease diagnosis and all the issues that are in tandem with IBD, I didn’t know if this was a donation I would ever be able to make. Even so, when the company I was interning with over the summer announced it was hosting a blood drive, I decided to do some research and was surprised to find that I would likely be able to contribute!

Whew! This experience was a rewarding mix of anxiety and exhilaration. The day of the blood drive arrived, and I was asked to fill out a survey that included questions about my age, weight, specific medication use, surgeries, etc. They checked my vitals and iron levels and deduced that I was a good candidate to donate. The only thing left to do was sit down and give over some of my life-saving bodily fluids-- an accomplishment I have been dreaming about for years. 

The nurse warned me to look away as she was about to place the needle, advice that, as a professional patient, I flippantly dismissed. Being an IBD patient, I am used to being poked and prodded with needles. Let me tell ya, that needle was MUCH larger than I anticipated. A word to the wise, if you have a fear of needles, you may want to keep your eyes averted at all costs should you decide to donate. In the end, it took about 15 minutes. They took a pint of blood while I sat in a reclining chair and enjoyed a well-earned snack. I was shocked at the amount of blood they drained out of me. Turns out, the average person has about 10-12 pints of blood in circulation but only needs about 8 to function normally. Honestly, though, I was really proud of myself for taking on this challenge and pushing my own limits.

Donating blood is a thankless, but worthwhile task. The person who will ultimately end up receiving your blood will never know who you are, but it is a life-saving and meaningful endeavor. For many, donating blood is a routine measure and most people probably don’t think twice about it, but for me, it was a way of giving back a little bit of good to the world. It was my way of saying, “Screw you Crohn’s.” It was my silent triumph against IBD and the limitations that come with it. The goal of this article is not to persuade you to go out and donate blood. I will say that it was physically challenging for me to do so. That being said, I do hope to inspire you to push yourself and seek out the endless possibilities that this world has to offer. Be patient with yourself and your condition, but don’t let IBD stop you from pursuing your dreams. Allow your experiences to strengthen your resolve and keep challenging yourself to experience all that you can. 

As one of our founders, the late Cory Lane, used to say, “live each day like an adventure.”

Andi

Life Hacks for IBD

By Leah Clark

It seems like these days there are life hacks for everything. Want to remove stems from strawberries? Poke a hole through the bottom with a straw. Color your keys with nail polish so it’s easier to identify them. You even can start harvesting plants using old paper tower rolls. The point is, there are all of these different “hacks” used in the everyday life, but are there some for those with IBD? We’ve compiled a list of five of the most useful and best life hacks for patients with IBD.

Use online services for errands when low energy or mobility struggles arise from IBD

The internet can be a wonderful place, and that is especially true for online shopping and services. Sometimes, those with IBD have problems running errands or leaving the house to pick things up. It can take up so much energy to do something as necessary as grocery shopping for people with IBD because of how much work it takes. For this, a nice hack is to order things online and have them shipped to your home directly, taking out the work and expended energy of having to do it yourself. Many grocery stores now have services that offer delivery of food and other items the same day you order. Ordering things online from department stores, too, saves time and effort. Many times, stores online offer more options than seen in stores, too!

Mobile apps are available to track symptoms, record food diaries, and more

One of the best life hacks for people with IBD is right at their very finger tips. There are so many apps available for mobile devices that can make managing their disease much easier. If diet is a concern for your disease, try using an app that records your own food and keeps track of nutrient breakdowns if you’re trying to focus on certain areas of your diet (such as maintaining high vitamin levels or increase calorie content). This also keeps a record so you can look back and see what might have affected your body if your symptoms worsen, as you can check for patterns. An all around good IBD app is called Cara Care, and it helps you track all of your IBD symptoms, such as bathroom frequency and sleep. It even allows you to create your own custom areas to cater to your unique IBD experience.

Monthly subscription boxes can eliminate the stress of always remembering necessary products

Much like the first life hack mentioned, it can be a struggle to spend time and energy to go shopping for things you need in your life. Not only that, living with IBD can be mentally draining, and it can be difficult to keep track of everything if your brain is exhausted. Luckily, there has been a great trend of companies offering monthly subscriptions where they ship products straight to your door that can make living with IBD a lot easier. Companies such as Blue Apron and Hello Fresh offer meal prep that is delivered straight to your door, eliminated the struggle of having to plan meals during busy times of your life. Other services such as Dollar Shave Club and even Walmart cater to provide hygiene products that don’t break the bank.

Keep an emergency IBD kit with you whenever you travel

Not so much a hack as it is just a smart idea, but a good idea is to always travel with essentials that can help whenever an IBD problem arises. This can include wet wipes for the bathroom, an extra roll of toilet paper, more underwear, an extra set of prescription medications or laxatives, a heating pad, or anything else that can ease symptoms when they occur. Accidents can happen, and it is especially hard to deal with them when you are far from the comfort of your own home. With the emergency kit, if anything unexpected happens, it will be easier to handle.

Sign up with your university’s center for disabilities services to get accommodations

Maybe a lesser known service that universities offer is their center for students with disabilities. Each university has a different name for it and how they provide accommodations, but they are here to help. With this service, students can sign up with their documented disease and receive accommodations they need related to their disease. In terms of those with IBD, these accommodations can range from requesting a dorm room nearest to a bathroom to receiving extra time on quizzes and exams for bathroom breaks. It’s important to set up an appointment with the service to ensure enough time allocated before such accommodations need to be implemented (such as extra test time). Also, if you ever need to take leave from school due to your disease, the center for disabilities will work with you until you’re able to return to class.

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What are some “life hacks” that you use for your IBD? Comment below and share with the rest of us so we can make living life with IBD a little bit easier!