00-12 in 12 Months

This article is sponsored by Gali Health.

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By Samantha Rzany

Ulcerative colitis is described as, “a chronic, inflammatory bowel disease that causes inflammation in the digestive tract”. And while most of the symptoms associated with IBD take place in the gut, some of the hardest and often most shameful ones take place elsewhere in the body. While most people know about my struggles with IBD, very few know about the subsequent issues that accompany my disease.

I’m someone who was always fairly thin and had a pretty fast metabolism. I never really struggled with my views on my body and was always pretty comfortable with my weight. I had seen numerous friends struggle with eating disorders, and while I could sympathize with them, I never really understood how someone could just stop eating. But when I started getting sick, I quickly grew to learn all of the emotions and struggles associated with eating disorders. 

I was diagnosed with ulcerative colitis on December 10, 2018, but my symptoms began long before then. Beginning around September of 2017, I began having severe stomach pains and found myself sick after nearly everything I ate. I started to try to adjust what I was eating in an attempt to see what it was that was causing such extreme pains. I saw numerous doctors who told me I was just stressed or that I had IBS and just needed to learn better management of my stress and emotions. I went to my first GI, who ran multiple tests that all came back negative. We started restricting types of foods like gluten and dairy to see if they were causing my symptoms. 

Because of the pain I was in and the limited foods I could eat, I was dropping weight pretty rapidly. I started hearing how “good” and “thin” and “healthy” I looked. People asked if I had started working out or what diet I was on. I was at my sickest, but to everyone else, I apparently looked my best. While test after test continued to come back negative and I continued to feel sicker and sicker, my weight also continued to drop. I found a sense of control in being able to choose whether or not to eat each day. People’s comments about how “good” I looked started to get to my head. I began to restrict my eating far beyond what was medically necessary to control my symptoms. 

I soon found myself to be the weight that I was when I was 13 and in 7th grade. I was shopping in the children’s section of stores and buying XS and 00 sizes in women’s. People told me I must be incredibly fit and in shape because they could see my abs, but in reality I was just so thin, that there wasn’t anything else there.

I continued getting tested for different illnesses and diseases, and the results kept coming back negative. I was angry, I was in pain, and I needed to control something in my life when everything else seemed so uncontrollable. By April of 2018, I was sickly thin. I finally admitted to myself that I needed help. I sought out a therapist that specialized in eating disorders. I worked extensively with her throughout the course of the summer. When school started back up in the fall of 2018, I was back to my normal weight and mentally doing much better. I had found a good medication that helped with my anxiety and depression and felt much more like myself. 

While my mental health was in a much better place, my physical health was still struggling. Around November, it began to plummet and, what I know now to be my IBD symptoms, got much worse. In December, I called my GI explaining my worsening symptoms and we scheduled a colonoscopy for the next week. 

The next few months after my diagnosis, I continued to get sicker. I was very limited in what I could eat, but I continued working with my therapist and we made sure I wasn’t restricting myself beyond what I needed to do for my IBD. Fast forward to March of 2019 when I was in and out of the ER multiple times a month. I was put on Prednisone for what I was told was going to be “just a couple weeks”. The prescribing doctor warned me of possible weight gain, but said that since I would only be on it for a few weeks, the 5 pounds would fall right back off. 

He was wrong. 

I was on Prednisone from March until August of 2019. And in the first two months on the medication, I gained 47 pounds. As someone recovering from an eating disorder, this was indescribably difficult for me. I found myself needing to shop in stores I had never been in before. I was wearing sizes I had been able to practically swim in just a short year ago. I went from roughly a size 2 or 4 to a size 12 in just a couple months. I had stretch marks. I had cellulite. And I was much heavier than I had ever been in my entire life. 

Over the course of the summer, I struggled hard. I found myself wanting to restrict what I ate in an attempt to lose some of the weight I was gaining from the medication. But I remained strong. I reminded myself of how much I had overcome in the past year. I reminded myself that the weight gain due to the medication was far beyond anything I could control and that restricting what I was eating wouldn’t help. I reminded myself that I was still the same strong and resilient person whether I was a size 00 or a size 12. 

When I was finally able to get off of the Prednisone and my IBD was in remission, I decided to get a tattoo to be a constant reminder of my strength. In a time when I could have so easily gone back to old habits and had every reason to feel self-conscious, I remained strong and held to the mindset I had worked so hard to get. I got a tattoo of the National Eating Disorder Awareness logo on the back of my arm as a reminder to me of how much I went through and overcame in just one short year. 

Nine months later, I have still not lost all the weight that I gained on Prednisone. It is still hard for me to look back at pictures of my normal and healthy self and wish I could look like that again. I have a bin stored away of the larger clothing I had to buy while on Prednisone in case I have to go on it again. It’s easy to look back at my life before my diagnosis and before I started getting sick and wish to go back to that time of my life. But when I look at everything I have gone through since then and everything I have worked so hard to overcome, I can’t help but be proud of the progress I have made.

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This article is sponsored by Gali Health.

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

The Importance of Sharing Your Story

It’s almost impossible to explain what it’s like to have your life change in one moment. Words crumble into letters, then into illegible hieroglyphics when you try to squeeze a feeling so big into the space between periods. Everyone experiences change in their own unique way, but it's always a shock to lose your sense of normal. With a lifelong illness, so many of the early days of the journey are dominated by confusion, anxiety, and uncertainty. Before a diagnosis, you're forced to fight an invisible war with an invisible enemy. On a daily basis, you deal with unexplained medical issues like abdominal pain, bleeding, and fatigue. Yet, all the while, you have no real option other than to go on living your routine life. For weeks, months, or even longer, you live a double life as a patient bouncing from doctor to doctor, and as your past “normal” self who deals with all of the chores of your past. Ultimately, a diagnosis provides only an answer, not all of the answers. 

There’s never a convenient time to be impacted by an illness, but it seems like human bodies break down at the most inconvenient times possible. It’s like how alarm clocks always seem to go off only two minutes after you fall asleep. I was a freshman at university when I first experienced the symptoms of ulcerative colitis. College is supposed to be the beginning of a lot of things. It’s the beginning of adulthood, of professional life, and of real independence. For me, though, it felt like the end. I thought my life was over, and that the future held nothing but medical challenges for me. The truth is that being sick is incredibly lonely, and it’s difficult not to feel like a burden. When you’re surrounded by illness, doctors, and medical appointments, it’s easy to turn inwards to protect yourself. But, by doing that, you also cut yourself off from the outside world.

Loneliness is a feedback loop. In essence, the lonelier you feel, the less you feel you can reach out to others, and the less you reach out to others, the smaller your social circle becomes. Interestingly, in the Internet era, people seem to be lonelier than ever. Despite the fact that we live in a world where connection is constant, people seem to connect less. To clarify, I don’t think technology is evil, or that it’s destroying social structure. It's just overwhelming, and it can be intimidating to be vulnerable and sincere online. But, it’s also incredibly important to be those things. 

By speaking truthfully and sharing our stories, we show others, and ourselves, that we are not alone in our battles with chronic illness. We learn more about how to manage our conditions, and we contribute to research. Most importantly, we connect and grow the chronic illness community. Through meeting and talking to others, online and offline, I’ve made new friends, and eased my own feelings of loneliness. I encourage others to share their journeys in whatever form they feel comfortable, and to reach out for support. Together, we are stronger than we are alone. Together, we can make invisible illnesses and struggles visible to the mainstream.  So, drop me a line, sometime.

Embracing Embarrassing IBD Moments

By Amy Weider

Growing up with Crohn’s Disease was a mental, emotional and physical rollercoaster. Living with IBD has caused many ups and downs. I gained so many life experiences and many have not been the prettiest to say the least. Having a chronic illness forces us to endure things we aren't ready for, which often leads to much embarrassment. And for me, having Crohn’s has reinforced many times my awkward tendencies in a humbling way. As a child, I didn't understand much of what was going on inside my body and my shyness led to many possible avoidable outcomes. Not to mention in general I tend to attract those horror stories of embarrassing moments. Still today I have yet to outgrow my awkwardness and often find myself in situations where things are very cringey. I have basically become accustomed to silliness and it now takes a lot for me to blush. Embracing unfortunately goofy moments is crucial to surviving as an IBD patient. There are many stories that are headshakers that come to mind all throughout my diagnosis process. So, here are a few of the painfully embarrassing things that I have experienced through my IBD.

Puking at inconvenient times and places

For me, when I was diagnosed my biggest symptom was puking. I would go to school for about a month or two and most days would puke. I puked in the sink, in the toilet and all too frequently on the ground in front of people. Outside of school the puking mayhem continued, including me puking on a ski hill magic carpet lift where the puke continued to resurface. As well as me puking alfredo on my friends parent’s brand new carpet during a sleepover.

 ...and on far too many people.

I am thankful that the people in my life have loved me and accepted me even though I have puked on most of them. I remember puking in my cousin's lap often in the car which many times forced us to change in a variety of parking lots.  My puking would make my sister cry because she hated puke. 

Trying to stay on a diet at the age of nine.

As many so often experience, the first treatment test when trying to diagnose IBD is changing one’s diet. For me, I was going no dairy and tried it out while I was at summer camp when I was 10. I tried so hard at every meal to eat no cheese, milk, etc which was so hard for me! Then, every snack time I had an ice cream sandwich which never even occurred to me that it was dairy. SMDH!

Never wearing a bra to the infusion center.

When I switched from my doctor in my home town to one in the town I moved to for college, it was not in a hospital but rather an infusion center. Therefore, you have to wear a lot of medical gear to check your heart rate etc. This means nurses put monitors all over your body. Clueless, I showed up braless, as I do, to the doctors and they had to put all the monitors and sticky things on my body without a shirt on and everyone was rather uncomfortable in the situation. Unfortunately, I can't  say this was the last time I forgot to wear one. One day I will remember.

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These are just a few of the stories that come to mind when I think of the unfortunate embarrassing moments in my Crohn’s life. I love to share these stories with friends and family and be nostalgic as heck with them. Remembering the times of being dumb and goofy always brings such joy and laughter to conversations. I have grown dramatically since first being diagnosed with IBD and have learned to find much comfort in growth.

Life Hacks: What Happens When You Age Out of Your Parents’ Insurance?

By Rachael Whittemore

Photo by Michaela from Pexels

You’re done with undergrad, finally got a job you wanted…maybe you went back to graduate school, but, anyway, you’re really getting a hang of this “adulting” business when BAM! You turn 26 and you’re officially kicked off your parents’ insurance plan. In the US, the Patient Protection and Affordable Care Act (ACA) aka Obamacare was enacted in 2010 and, as part of several mandates, upped the age we could stay on our parents’ coverage to 26. I’m pretty sure this was helpful to pretty much ALL young people. For example, my dad started working for the state of North Carolina during this time, and I was able to stay on his Blue Cross Blue Shield (BCBS) plan, which had decent coverage. I was covered by this plan as I went through visits and testing for my ulcerative colitis (UC) diagnosis and was very thankful that the expenses I had to pay were largely covered. I will say that my parents were paying the yearly premiums and any bills that came directly to them; our deal was that I was responsible for any bills that came directly to me and for all of my visit and prescription costs. Now that I’m completely financially independent, choosing health insurance and paying for it is solely up to me.

Let’s go back to 2018 - my 26th birthday was quickly approaching in September and I was thankful I was also starting PA school that summer – I knew there would be a school insurance plan I could enroll in once I was kicked off of BCBS, but didn’t really look into my other options until I started experiencing all of the costs and tedious parts of navigating US insurance plans. I’m here to share some about that experience but also to give you some tips about what types of plans you can enroll in and how to be savvy and advocate for yourself when you invariably get mail from your insurance company one day and you’re like, “WHERE DID THIS COME FROM?!” As someone with a chronic illness and who has specialists I see for other medical surveillance, I have experienced new challenges from navigating the health insurance plan world on my own. First, skim this article for some health insurance 101 so you can better understand some of the terms I’ll discuss below if you weren’t already aware: link

Tip #1: Look at all your options.

If you’re working, see what insurance plans your employer offers if they are required to offer coverage. Look at the healthcare marketplace at healthcare.gov to compare plans.

• If you’re a student, look at your student health plan but realize this is typically just medical – if you need dental and/or vision coverage, you usually pay additional costs and it can be pricey and not worth it on our budgets.

• Also, if you’re a financially independent, single student over the age of 26, look into Medicaid in the state you live in. You should easily qualify because your only source of money is from loans and that doesn’t count as income. Feel free to call your local state center for Medicaid as they can inform you about your options for various plans if you qualify. Medicaid

• If, by chance, you served in the military prior to being diagnosed, you might qualify for health insurance covered by the Veteran’s Affairs healthcare system. See if you might be eligible here. If your parents are currently in the military, you should qualify for Tricare until you’re 23 if you’re a full-time college student. If not, you’re kicked off at 21. Fun Fact: The VA system is the closest thing we have to a true socialized medicine in the US.

Tip #2: Understand basics about health insurance plans.

I know this is annoying, but it is really helpful to understand basics because it will allow you to see what plan best fits your needs. Know the difference between plan types like HMOs and PPOs, if your plan(s) require referrals to specialists, what your monthly premiums are and what your out-of-pocket deductible is if you have one (you will probably have one).

• Pro tip: Most of us with chronic conditions do not want a high deductible plan because you will be paying thousands of dollars before your insurance will cover visits, testing, meds, surgeries, etc. Usually, people in our situations will have a plan that has higher monthly premiums but lower out-of-pocket costs for everything else since we utilize the healthcare system more than the average young person.

• Know your co-payments for various visits and prescriptions. This varies depending on your plan and what they have determined for visits such as primary care, specialists (hi there, GI providers!), ER, etc. This is typically required regardless of your deductible and coinsurance. Prescriptions are typically tiered and have predetermined costs. Your insurance card or brochure should detail this.

• Know what your coinsurance is. Co-insurance is how much your insurance covers + what you cover once your out-of-pocket deductible has been met. My dad’s plan was a PPO with an 80/20 co-insurance. This means that once our deductible was met, I went for a visit, everything was billed and the claim was filed. Our insurance *typically* paid 80% of that bill and then I had to cover the remaining 20% unless it’s considered preventative care.

• Example: My current student plan is through United Healthcare Student Resources. The entire cost of the plan (all the monthly premiums together) goes into my cost of attendance for my PA program and is about $3400/year. I have a $500 deductible I have to meet before my insurance will start to pay for anything that’s not considered “preventative care.” After I’ve met my deductible, my coinsurance is an 80/20 – I pay 20% of the bill once the claim has been filed and comes back. And guess what else? If something isn’t covered under my plan’s benefits, I pay out of pocket for it.

Tip #3: Know your benefits!

This is honestly closely related to tip #2 – once you understand a little about the various costs that go into what plan you are thinking about, KNOW YOUR BENEFITS!

Every plan has an outline of what is covered/not-covered and is commonly known as an EOB (explanation of benefits). This outline should also tell you what falls under “preventative care”, which includes things like yearly physicals, Pap smears, STI testing, depression screening, flu shots, etc. That should be covered by your plan at no cost to you.

Tip #4: Your plan won’t disclose everything in your policy.

Refer back to #3 – know your benefits, but know that your plan likely will not disclose every little thing they will cover in the outline of your policy.

This is where things can get annoying and frustrating, at least in my experience. Because not everything can be outlined (and we understand that to an extent), sometimes you open a claim letter in the mail and see an amount you owe that literally makes you cringe and wish our healthcare system was completely different. This is when you should….

Tip #5: Don’t be afraid to question any claim/bill you get!

I cannot stress this enough, especially when I have multiple medical visits throughout the year, several of which are to specialists. I have caught errors made by my insurance company or even the practice I was seen at and saved myself money, which as a poor graduate student – let’s face it – really matters. Look at what you were billed for (the visit, tests, etc.) and if it was covered (even as part of your co-insurance) or if it was outright denied. If you’re totally confused as to why something wasn’t covered…

Tip #6: Don’t be afraid to call your insurance company and go through your claim/benefits.

It literally pains me to type this, because I’ve spent more minutes than I want to admit on the phone with insurance companies (both as a patient and from my previous jobs in the medical field). However, you sometimes can’t get to the bottom of a particular coverage denial unless you talk to someone about your claim. Look at this as advocating for yourself as a patient and making sure you’re not getting overcharged or denied something that should be covered.

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I could go on and on with other tips, but what I just wrote above might seem overwhelming. That’s ok. Sadly, we all have to learn how to navigate this system in the US unless something drastically changes in the future. And now back to my own story - currently, I still have my school’s insurance plan until July 31, 2020. I recently enrolled in Virginia Medicaid that includes dental/vision (yessss!). That will be my new/bridge insurance until I get a job after I graduate in December. Remember to do your research and feel free to call the ACA’s marketplace, Medicaid, the companies offered through your employer, etc. People are there to help you and can give you info that allows you to make the best decision for your health going forward. 

The "Luxury" of Advocacy

By Nikhil Jayswal

DISCLAIMER: This article does not portray a complete picture of the state and scope of patient advocacy in India. It is my personal opinion based on my personal experiences.

When I tried to find a definition for “patient advocate” on the web, I found not one but several different definitions; each definition listing out various duties of an advocate. After reading various definitions, I’ve come to understand that a patient advocate has three major duties:

1. Educating a patient about his/her condition and the available treatment options

2. Helping a patient navigate the healthcare system and make the “right” choices

3. Speaking for/against policies that protect/endanger the best interest of a patient

If we think about it, doctors are best eligible to be good advocates. They understand the disease the best and they know the system the best. However, as participants of an under-funded and over-burdened healthcare system like the one that exists in India, doctors struggle to be the best advocate that they can be. India therefore desperately needs a community of advocates who can educate and help patients make well-informed decisions. Articles and papers can be found on the web advocating for the creation of patient advocate groups in India.

Patients themselves can be good advocates too. Experienced patients with a good understanding of their condition and the healthcare system can guide other patients to make the “best” choices. In my experience though, sadly, not many patients understand their condition very well. Many patients also shy away from educating and helping other patients because of the stigma associated with sickness. This is also a major reason for the lack of support groups in India.

In such a scenario, how are patients supposed to make well-informed decisions? How are we supposed to act in our best interest? There is a select group of patients though, that have that “luxury” and an entire ecosystem exists, which this group of patients can leverage to get the care that they understand is in their best interest. 

Patients with strong socio-economic backgrounds have a larger plethora of treatment options at their disposal. A large number of hospitals and doctors exist that cater to this special group and provide them with all the information these patients need to make a choice. No diagnostic is inaccessible to them and their voice is heard keenly. They advocate for themselves and the system advocates for them too. 

I hold no grudges against this population of patients, but the thing that prompted me to write this article is that the socio-economic background of a patient dictates his/her access to information, treatment options, and patient rights. There is virtually nobody who will advocate for you if you do not belong to a select population. This huge divide disturbs me. There are a number of reasons for this divide and it’s a complex situation. Poverty, illiteracy, lack of sufficient government expenditure on healthcare, income inequality, social divide, etc. all contribute to creating a system that is so constrained that it takes away your voice and choice unless you have a privileged background. While such scenarios may exist everywhere, the larger population of patients in India often find themselves in the dark and struggling to protect their best interest.

The consultation times in hospitals that deal with the larger population of patients are often in minutes, sometimes even less than 5 minutes. With a disease that’s as complex as inflammatory bowel disease (IBD), that is in no universe sufficient for a doctor to explain what’s happening to their body to a patient. With few informed patients, it then also becomes difficult to find a reliable peer group. IBD can also be a costly disease to manage, and many patients find themselves without insurance, or with insurers who refuse to cover patients with a pre-existing diagnosis. I was one of such patients and eventually, I went bankrupt while I was still severely ill. Government schemes target those who live below the poverty line and I was not one of them because I did not have a certificate, even though I had no money. Getting that certificate is a lengthy process and I did not have the time for that as my disease was progressing very aggressively. I felt helpless and I contemplated suicide many times because of my financial inability to get treatment. And in fact, many people do commit suicide when they find themselves in that situation. Those who are eligible for financial support from the government, often face harassment by middle-men. I can go on and on about the skewed system that basically takes away your dignity and leaves you feeling guilty about having a disease that you did nothing to contract. You don’t understand what’s happening to you. Most of the treatment options are beyond your reach and you can’t ask for help without breaking your back. 

As a young adult, which is the age group where IBD is most prevalent, a lack of advocates intensifies the challenges that arise from getting diagnosed with IBD in India. As a young adult, you do not want to feel so helpless. It takes a huge mental and emotional toll on you. You feel like a burden on your family. You feel powerless against this disease. Depression and isolation intensify these feelings and life can seem pointless at times. Education and employment are hindered and you face discrimination. There is no law to protect you from that discrimination. Your self-image deteriorates. Self-harm and suicidal thoughts can occur frequently in the absence of support. Even with support, sometimes the pain is too much for some to handle, and there have been instances of suicide by young patients in the Indian IBD community because of lack of proper support.

This is why advocacy to me, seems like a luxury in India. And this is why I had to write this article. I have many friends who are struggling to get a basic treatment, and I know people who deteriorated their condition due to a lack of information and counselling. I now know many kids and teens with IBD, and I worry about their future. Without advocates to educate patients, to speak for their rights, to help them make better choices, the young adult population in India cannot be productive and fulfill their potential. India now has the second-largest IBD population after the U.S. Therefore, there is an urgent need in India for advocates who can act as a voice for patients. And I sincerely believe that the people who are lucky enough to advocate for themselves need to come together with those advocating for the lesser privileged population of patients, to create an inclusive environment where every patient gets an equal chance to fight the disease.  

In a larger spirit, I want to end with some words of Claire Wineland, with whom I absolutely fell in love, after listening to her talk about her condition and her views on life. When I tried to contact her, I found out that she had died. I encourage you all to watch her on YouTube. She remains the best advocate I’ve ever come across.

“... I'm actually here to talk about how do we change the way that we treat sick people. How do we stop pitying them and we start empowering them? The way that our society works, we teach sick people that when they are sick, somehow, someway, they cannot be as happy as normal healthy people. We teach them that their happiness, their contentment in life, their joy in life is tied to how healthy they are. ...”

“... Innovation doesn’t happen because there’s some person who’s in some great circumstance and everything is going well and they get on a roll and they make something for the world.  Innovation happens, art happens because of suffering. …”

“... How do we make it so that when someone is born with a chronic illness, someone who is going to be sick, who might always be sick, who might die sick, can still live a life that they are proud of?  How do we teach kids who are sick, teach people who are sick in general, to not feel ashamed of their illness or their experience of life, but to learn from it and to make something from it? ...”

As an advocate, I believe that is what our fundamental duty must be. To change the way society looks at sick people. To change the way we sick people look at ourselves. Everything we do as an advocate must be aimed towards creating a space for sick people to fulfill their potential. I hope I see the day when it becomes possible for every patient to self-advocate for themselves because that will be the day when every patient is empowered and every patient is no longer a “patient”, which originally meant “one who suffers”. 

Thank you for listening to me. 

P.S. Some of the readers might think that I’m painting a gloomy picture of the situation in India, but this is what I have gone through and many patients go through, and I felt it was necessary to portray the situation right as it is. My goal here is to bring attention to the inequitable situation present in India, and the fact that the lesser privileged section of the patient population in India has a much greater need for advocates than the privileged section of the patient population. 

P.P.S. I had initially titled this article - “Patient Advocacy in India”, and my first instinct was to just leave the article blank. Then, one day I was talking to a friend of mine. She’s a nurse and has IBD along with Asthma. I told her that I wanted to write an article about the state of advocacy in India and I asked for her thoughts on it. Her advice was - “leave it blank!”

Stress and IBD

By Grady Stewart

There are times when I am a ball of yarn. I am tangled into forms that cannot be graphed even with the complex mathematical equation. I am twisted into abstract shapes that would make the jaws of even an Olympic gymnast or a world-renowned abstract painter drop agape. It feels like I’m being pulled in a thousand different directions by hundreds of invisible hands. I’m poked, pushed, and prodded by all of these competing forces. In the end though, I never end up going anywhere. It’s odd, because you’d think that eventually I’d be drawn in one direction with all of this energy behind me to move me forward, or sideways for that matter.

 Instead, I’m like a magnet. I’m frozen in the static between positive and negative charges, unable to budge in either direction. While it’s exhausting to feel like there are too many demanding directions to chase after, it’s also frustrating to end up going nowhere. I think everyone has experienced a feeling similar to what I have described. Stress, and the feelings of anger, disappointment, and anxiety are universal. However, we all deal with stress in different ways. In fact, on an individual level, we often react differently to different stressful events. Procrastination is a common response to stress. In fact, it’s so common that “procrastination” has practically become its own emotional experience independent of stress.

It’s impossible to avoid stress, but when you live with IBD, it can be a major challenge to even minimize it. Living an everlasting and ongoing health issue naturally consumes a fraction of your energy on a daily basis. It’s like having dozens of Internet browser windows open with each of them on a different website. One of them is open to you email account, and another is open to Google Docs where you’re writing an important article about stress and IBD. In the background, a window is minimized, but always running, and always blaring Russian heavy metal. You try to jump between windows, trying to finish every task you set out to complete, but with the added background noise it becomes much more challenging. 

Like that permanently minimized window, chronic illness is something that lurks in the background of life, but that can never be forgotten, closed, or removed. Moreover, in the age of social media, there is an infinite amount of voices constantly yelling at us to grab our attention. On top of that, while it’s easier than ever to connect with others, the competitive nature of social media and overflowing stream of content can feel oppressive.  

I’m not saying that social media is bad, or that stress is entirely toxic. Stress can serve as a powerful alarm for danger, or as an indicator that tells us we need to change course. However, when you have IBD, it can be a trigger for a flare and lead to negative health consequences. As patients, it’s important to stop from time to time, and take note of how we’re feeling on a physical and mental level. The goal isn’t to stop stress entirely, and it’s not necessary to delete all of our social media accounts. Instead, the goal should be to adopt a healthier mindset towards our diseases and the factors that influence them - like stress. 

It’s easier said than done. After all, we’re all imperfect, and just trying our best. At least, that’s what I’m trying to realize and to learn. Every day, it gets a little easier to understand that not everything is controllable, or even important. It gets easier to slow down, and to learn that not everything has to get done right away. It gets easier to realize that it’s okay to just breathe, and let things come and go as they will. After all, eventually we will all get to wherever we’re going, so why not enjoy the journey?

A Whole New Ballgame

I’ve never really talked about this, but I guess there’s no time like the present. So, here it goes.

I grew up playing sports. It was in my blood. I felt like it was an integral part of who I was and who I was meant to be. The seasons of the year were defined by the sports I played. Sometimes, I felt like I was too, and I liked it that way. That’s how I wanted it to be. That’s how I wanted to be known. I wanted to be the girl who scored the winning goal and saved the day. 

Growing up, in the fall, weekends were spent running around a soccer field and getting pieces of turf stuck in my sweaty shin guards and eating orange slices after a game. In the spring, my parents would drive me from pitching lessons to AAU games and I put one too many dents into the siding of our house from pitches gone wild. Then middle school came around and so did new trends and all of a sudden I wanted to learn how to play lacrosse like everyone else. 

I thrived in a competitive atmosphere. I used the rush of the bases being loaded or the scoreboard being tied or the game clock ticking down to feel alive. The pressure to be the best came solely from myself, never from anyone else. If I’m going to do something, I’m going to do it right. I was a perfectionist. Well, I still am. It’s both a blessing and a curse; it’s both my biggest strength and my biggest weakness. 

I always thought I was going to go to school for sports. Everyone in my family did. My dad was a basketball star who turned down NBA pre-training camps to raise a family. My mom played tennis in college and had the meanest backhand on the court. 

I always thought I was going to. I really did. And then I got sick. And a lot changed. 

My sophomore year of high school was when I quit the lacrosse team. I was in too much pain and too weak to carry in grocery bags from the car let alone run up and down the field. It was when I had to be put on home-bound instruction to finish out the year when I knew, in my bones and in my soul, that something was wrong and my body was no longer functioning the way it had been. 

The day I handed in my jersey was the day I felt like I lost a piece of myself in more ways than one. It felt like the vision I had of my past, present, and future shattered like broken glass. When you’re diagnosed with a chronic illness, in some ways, you do lose a piece of who you were and who you thought you were going to be. 

At the time, what I didn’t realize, though, was that the piece of myself that I had to give up would be replaced by a million others and who I thought I was going to be was not who I was meant to be. What I didn’t understand was that I will never be defined by a singular sport or a singular accomplishment or even a singular character trait. 

Do I miss sports? Yeah. I miss the way your teammates would wrap their arms around you in a huddle and the way everyone had to shake hands after a game, no matter if you won or lost. But I’ve also found that same support in this community. I’ve found that same sense of pride in simply being myself and being there for others. I feel just as alive helping others as I do when I would strike out a batter. I feel like maybe losing who I thought I was helped me find who I really am. 

Just to get this straight - playing sports and having IBD are not mutually exclusive. People like Carrie Johnson, Kathleen Baker, Rolf Bernischke, and so many others have shown me that. My own journey and experiences have also shown me that it just wasn’t my path, and that’s okay. It’s more than possible, but it’s also okay if it isn’t for you. 

Nowadays, now that I have more energy, less pain, and the ability to move my body again, if you give me a softball I can still throw a mean curve ball. If you give me a soccer ball I can still pop a rainbow. Those skills have somehow stayed with me through everything, like muscle memory, but they no longer carry the same weight that they used to. 

They remind me of some of the best times in my life, like spending hours in the backyard practicing with my family. They remind me of some of the worst times in my life, like when I had to say goodbye to parts of my heart that I never thought I’d lose. 

When I think about it, those skills tell part of the story of my transformation - of how the girl I once was evolved into the woman I’ve become. One who isn’t defined by the sport she plays or the home run she hits. I’ve become me, just me, and maybe it took losing sports to finally realize that’s more than enough. 

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.