My IBD Life: The Road Not Taken

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

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

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

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

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

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

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

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

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

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

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

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

Studying with Crohn's

By Simon Stones

I feel as though I’ve been studying for most of my life – well, there is some truth in that! After 22 years in education, it is safe to say that I am well and truly ready for the formality of it all to end… though I know I’ll never stop learning in life!

There’s no right or wrong way to go through education, especially once you reach the end of your compulsory education. Add into the mix one or more chronic conditions like inflammatory bowel disease, and things can feel a little more complicated– especially when deciding on what you want to do, and the way in which you want to do it. Moreover, what works for one person won’t necessarily work for another – which is it’s so important to do what’s right for you. 

I went straight from compulsory education to University, where I completed a four-year Bachelor’s degree in Biomedical Sciences, before going straight to a three-year PhD in healthcare. Some may say it’s sensible to get all of your education done at once. Some may say I was lucky to be able to progress through the ranks one after another. Some may also say I must be slightly bonkers. In all honestly, it’s a good mix of the three, especially the last one!

My thirst for learning really began during childhood, while living with juvenile idiopathic arthritis. As a result of my restricted mobility at the time, I struggled to participate in sport. It is here when I channeled my energy into my academic learning – my body wasn’t much use, but I had a brain and I wanted to use it. Living with a chronic condition throughout my childhood had, in one sense, conditioned me to be inquisitive and desperate to learn. Although I missed quite a lot of time at school through being at the hospital and being unwell, I never gave in. I would always be working – it could be reading, completing workbook exercises, or writing. Every appointment, every infusion, every day sat in bed unable to move. In one sense, it gave me a purpose at a time in life when a lot of things didn’t seem to be going my well.

When I was diagnosed with Crohn’s disease at the age of 14, I was just about to embark on the final two years of secondary school here in the UK, where I would complete my first set of important exams, known as GCSEs. At the time, I wanted to become a science teacher, and so I knew it was essential for me to do well in my exams. Everyone kept telling me that I would pass, but being the perfectionist I am, I didn’t want to just ‘pass’ – I wanted to ‘the best’. Others often assumed that because of my health problems, getting a ‘pass’ would be ‘amazing’. This was often well intended but came across as a little patronising. I asked myself why should I achieve less than what I am capable of, just because of my health? It was this mindset which pushed me through. Don’t get me wrong – the stress of the exams in their own right, plus the stress I placed myself under, wasn’t helpful towards my health, and a regular pattern around exams would be a flare-up of symptoms. The same went for my A-Levels, the qualifications required for most University courses.

Over time, I tried my best to develop strategies to help to me manage my stress, while making sure everything was in place to help me achieve my potential without being at a disadvantage from my health conditions. It is often easier said than done, but planning has been fundamental to me limiting the stress I’ve found myself under while studying. In practice, this meant keeping on top of work, writing up notes as soon as possible, and looking ahead at what needed to be done by when. I also made sure that my school and college were fully aware of my health conditions, and that I had access to all the support I needed. This included extra time and the option of rest breaks in exams if needed, as well as being in a room away from the main exam hall that was near to an accessible toilet. Nowadays, with increasing use of technology, I would hope it is easier for students to keep in closer contact with their teachers/tutors, as well as be able to access different pieces of work electronically. This was starting to happen when I was at college between 2010 and 2012, but a lot has changed since then!

“It always seems impossible until it’s done.”

I started University in September 2012, originally studying Biology with a view to becoming a science teacher. I had toyed with the idea of studying Medicine, but I came to the decision that it wasn’t for me at the time. Sometimes I wish I had pursued the Medicine route, but I’ve certainly no regrets. After one year of Biology, I decided to focus my degree on Biomedical Sciences. It was during this period that I began my patient advocacy journey and found my love for research. Inevitably, the first few years of my degree involved quite a lot of work in the labs, which I thoroughly enjoyed and found fascinating. However, on a number of occasions, I did have some issues. While experiencing flares with both my Crohn’s disease and arthritis, in addition to experiencing quite severe cramps and pain while also in remission, I found it challenging to be on my feet constantly while performing tests in the lab. I always had a lab chair nearby, but it wasn’t always practical to be sat down. There were many times when I would be wishing for time to pass quickly so I could get my work done and sit down to get some relief. These experiences helped me to decide that being in the lab 24/7 in the future wouldn’t be for me, despite my love for science and research. Thankfully during my third year, I spent a year on secondment with a pharmaceutical agency, where I was able to use my knowledge and love of science in a way to inform medical communications and the drug development process. Like most things in life, you learn along the journey… coming across the things you least expected doing that you learn to love the most.

While I loved my time at university, I certainly wouldn’t want to repeat the undergraduate degree process! While it was worthwhile and an incredible experience, it was demanding. Thankfully, I graduated in 2016 with a first-class degree.

I then found myself at another crossroad. Do I take a graduate job and leave studying behind, or do I go on to do a PhD? Most people tend to undertake a Master’s degree before a PhD… but I guess I’m not most people. I came across a three-year funded PhD place in healthcare, focussed on supporting children with long-term conditions. I felt as though it was screaming out to me, ‘please apply!’ I decided that I would only apply for this PhD, and if I didn’t get it, then I’d look for a graduate job. I genuinely didn’t believe I would do, but with some luck, I received that wonderful call on Thursday 9th June 2016 – the afternoon after delivering a talk at the European Rheumatology Congress in London. I couldn’t believe my luck!

Fast forward nearly four years, and I am near the very end of my PhD – writing up my PhD thesis on a topic that is so close to my heart – supporting young people with juvenile idiopathic arthritis and their families to manage their health and wellbeing. It’s like a dream. The PhD study experience has been a very different one to everything before. Unlike school, college and an undergraduate Bachelor’s to a degree, a PhD doesn’t feel like ‘studying’. It certainly feels more like a working job, but one where you’re wandering around in the dark. It’s also quite an isolating and lonely journey, though I have been blessed with wonderful supervisors, supportive colleagues, and great friends and family.

As I’m writing up my 80,000 to 100,000-word PhD thesis (yes, I know, it’s going to be a book!), I’ve been doing an awful lot of reflecting, thinking about what worked well, what didn’t work well, and what I would do differently if I was to repeat the PhD again, or do another PhD… which I can guarantee is not going to happen! During this thought process, I feel blessed to have been given the opportunities that I have received over the years, but I also acknowledge that the majority of those achievements have been down to guts and perseverance – and I should be proud of that. 

Sadly, it has also highlighted many of the cracks where people with chronic conditions fall through along the academic journey – and how attitudes and practices need to change so that others aren’t discriminated against by an ableist culture which doesn’t recognise and support people of all backgrounds to achieve their goals. We can do this by speaking up, highlighting our needs, and making sure others support us in doing what is needed. Never feel as though you are making a nuisance of yourself, or that you are demanding unachievable things – and if you are made to feel like this, don’t give up, seek support, and fight for what you are entitled to.

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.

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. :)

“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! :)

Piecing Together My Chronic Illness Puzzle

By Grady Stewart

Photo by Hans-Peter Gauster on Unsplash

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

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

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

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

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

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

Besides, who wants to be normal anyway?

Coming to Terms with Crohn's

By Simon Stones

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

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

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

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

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

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

---

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

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

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

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

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

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

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

Reflections on Being Diagnosed with a Chronic Illness as a Child

By Leah Clark

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

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

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

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

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

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

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

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

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

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

Doing the imPOSSIBLE while living with IBD

By Andi Nowakowski

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

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

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

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

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

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

Andi

Crohn's in College: The importance of understanding flare-ups and your disease

By Erin Ard

I've been living with #CrohnsDisease for 11 years, but even with years of experiences, mishaps, and triumphs, I feel I'm still learning how it affects me. One of the biggest realizations happened recently when I was in college. Around my junior year I had hit a wall. It was becoming increasingly harder to navigate my studies and my energy level was draining rapidly. I had been taking classes year round for three straight years, taking classes in the summer and having heavy, difficult course loads to accommodate my second major and research. Unbeknownst to me, I was actually neglecting my health.

I started consistent Remicade treatments in high school and the difference it made was 100 fold. I went from an underweight, fatigued freshmen to a strong, motivated sophomore. The change was so positively significant that I thought all of my worries about Crohn's were behind me. I could eat good food again! And play competitively in sports! And I carried this mindset into college. I thought my struggle was over and could focus all my energy on school.. And I carried this mindset into college. Turns out I was wrong.

After a few painful semesters I started to realize what was happening. I was starting to get burnt out, I was sleep deprived and running on fumes. I was struggling with my motivation and my anxiety was building. Though seemingly dormant, my Crohn's disease was still affecting my mind and body.

I had ignored all of the signs up until this point. The fatigue and anxiety I felt in classrooms. The random little fevers during an important lecture that distracted me. The joint pain that slowed my walk to class or hindered my ability to exercise. The gut discomfort during an exam that forced me to finish quickly to get the hell out of there. And finally the gut-wrenching pains that made it impossible to walk. Everything added up, but it took me three years in college to see.

Starting my senior year I sought accommodations from our Disability Center on campus, which alleviated most of the worries set in place by my Crohn's. However, I was left wondering.. Why did it take me so long to figure out Crohn's still had a big impact on my daily life?

Essentially, it came down to my personality and one big misconception. During the initial stages, Crohn's had such an emotional impact that I've always tried to shut it out. In shutting it out, I failed to seek out information from outside resources and tried to figure it out on my own. In doing so, this lead to one big misconception around the focal point of Crohn's disease - flare ups.

I never generally understood what they are, their causes, how to help remedy them, and everything else. See, before I went on Remicade I was in a constant state of flaring up. I was unable to get it under control long enough to have a normal bowel movement. Which meant I wasn't able to eat much and I didn't have a lot of energy. I lived off of my mom's homemade chicken noodle soup and mashed potatoes because they were the only meals gentle enough to my gut. Here is what I have learned since then.

Flare-ups are periods of time when the disease becomes active and symptoms reappear. They consist of prolonged symptoms like gut pain from inflammation, diarrhea, blood in the stool, fatigue, and/or weight-loss. How long the symptoms last and the severity of them is different from person to person. Some medication, like Remicade/Renflexis/Infliximab, is specifically used to control symptoms enough to enter remission (i.e. an absence of symptoms or inactive disease), which means no flare-ups! Medication may be combined with other meds or diet restructuring to help keep symptoms under control. Over time, however, the same treatment regimen may not have the same affect. So adjustments in type of medication, dosage or frequency, or further diet modifications may be needed. Here, this whole time, I had thought of my disease as in remission, inactive, and needing no more thought. When in reality, it's going to be an every day effort.

See this article from Very Well Health to learn more about flare-ups and different ways to define remission.

My personal tip is to pay attention to what your body tells you. Focus on whether certain symptoms are still present - do you have gut pain? Diarrhea? Painful bowl movements? Other non-gut related symptoms? Pay attention to how long these symptoms persist and take notes. This might mean your Crohn's or Colitis is still active and it's important to tell your health team. If one thing just isn't doing the trick, there might be additional options to help you reach your potential in healthy living. And if you haven't already, seek out information about the disability center on your campus!

I've recently started to pay more attention to my body's responses. What used to be my response to the question, "What can you eat?" has changed from, "Oh, I can eat anything!" to, "Well.. I'm still trying to figure that out." In all honesty, I AM still figuring it out. Though certain foods don't affect me like they did before medication, they still influence how I feel. And it is my responsibility to make sure I take care of myself by eating the right foods and not the wrong ones.

Be attentive. Always seek a better understanding. Don't be afraid to ask questions or ask for help. And most importantly, take care of yourself!

In the Name of Love: The Importance of Having a Support System

By Erin Dunne

Stomach cramps, constipation, diarrhea, fatigue, low FODMAP diet, gluten-free diet, dairy-free diet, little fat, no sugar, no caffeine, MRIs, CT scans, GI exams, Prednisone, Remicade… the list goes on and on. If you have #IBD, the chances of you encountering at least one of these things at some point in your life is very high. Some individuals have what can be seen as "easier" cases; they are put on a single treatment plan that keeps their symptoms at bay and may even lead to clinical remission. There are others that may jump from treatment plan to treatment plan without seeming to find one that ultimately works for them. Each journey of somebody with IBD is unique, and while we can empathize with others and find comfort in similarities we may share, it is easy to feel alone in this adventure. Despite frustrations we may feel at any given point, it is essential to establish strong relationships to lean into and lift us — relationships with friends, family, professors, and ourselves.

Through love, even the impossible seems practical, and with a disease that is so unpredictable, this rationale is comforting.

I have had Crohn's Disease for thirteen years now, and I can honestly say that through the years, most of my strength has been obtained through my relationships with others. For many years, I was one of the fortunate individuals that often did not feel as though I had an illness. I took two pills a day, was not restricted to a specific way of eating, and experienced few symptoms. Compared to my friends around me, the only difference between us was that I had to take medicine at certain times of the day and had monthly doctors' appointments. Despite these minor differences, I still felt isolated from others my age. In my world, I was the only person I knew with IBD and had no idea of the various severities of the same condition. It wasn't until I attended Camp Oasis- Michigan that my eyes were finally opened, and I no longer felt alone in this journey.

My third summer at Camp Oasis. Can you spot me and CCYAN Admin, Sneha?

Throughout my time at camp, I met so many people with different stories, and I was fascinated by every one of them. Not only was it wonderful to be able to relate with others my age but also to idolize the older campers and counselors for how strong they were. I returned to camp for four summers and connected with so many lovely individuals throughout the years that have helped shape my life; some of which I still am in contact with!

I highly recommend trying to include people that have experienced IBD into your support system because not only do you gain more love in your life, but also people that get what you're going through! If you're anything like me and don't have family members or friends that are familiar with the disease, it can be hard to share stories, concerns, even successes without feeling like they're not entirely understood. (Sorry mom for the various bowel movement updates, but thanks for listening!) Getting in contact with others can be very easy! Communities like CCYAN, CCFA, Camp Oasis, and any groups through universities, hospitals are all great places to start. While each story is different, we are far more alike than you would think.

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Although I mentioned earlier that I had considered myself lucky to have an easier time with Crohn's, the past two years have been anything but that. With being on the same medication for most of my life, it stopped being effective and could no longer support the inflammation in my system. I have been dealing with a reoccurring flare since and have gone through various forms of treatment to try to tame my symptoms. At first, I had become more aware of food intolerances, often experiencing diarrhea, severe bloating, and severe stomach cramps. Through trial and error, I have found a diet based on whole foods (vegetables, fruit, fish, poultry, nuts) makes me feel my best but I am still finding things that do not agree with my body (rip mangoes… you will be missed). I am currently taking Humira but am exploring other medication options. Even with all of the changes I have implemented to ease my symptoms, I know I can experience much better and strive to heal my body as much as possible.

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I would be lying if I said I was always hopeful during this process of finding a treatment that my body reacts best to. There have been times I have broken down due to being so frustrated with not seeing or feeling any improvement; sometimes I can feel as though I am my childhood self upon the first diagnosis, scared and alone. At my lowest times, it can be easiest to isolate myself and wallow in my self-pity, but luckily, I have learned that my support group of friends and family, although they can't relate on a personal level, are always there to listen and help to the best of their ability. Being away from home for school, I am not able to lean on my family as much as I would have in the past. Although I have always been independent, it is comforting to know that I have loved ones around that are there for me through my struggles and my successes (never underestimate the power of a hug). I have been blessed to find another form of a family at Spring Arbor through wonderful friends that I love with all of my heart. Even though we have not known each other long, it is as though I have known them a lifetime. They go through my problems alongside me, help me come up with solutions, and act as my parents when I am sick and unable to leave my dorm room.

A few weeks ago, I was experiencing terrible symptoms; I was trapped in my bathroom the majority of the weekend and did not have much of an appetite. My friends knew I was not able to walk to the Dining Commons, so they took it upon themselves to bring me bananas and easy to digest, bland foods. Another day, I had expressed frustration with not having a doctor at the moment and feeling as though my current treatment plan was not working. My friend spent her afternoon going through scholarly articles and websites to find information on healing diets, fixing nutrient imbalances, and alternative healing techniques. Other times, when we are eating out or visiting someones home, they make sure I have something I will be able to eat. To say I feel loved and fulfilled is an understatement! I cannot stress enough the importance of having a support system in your life.

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Whether you're currently dealing with IBD, mental illness, body image, etc, being able to express love for others as well as receive love from them is beneficial for your brain and your well-being! It does not matter what the size of your support system is or who is in it, as long as these individuals support and love you and are positive additions to your life. I hope while reading this you have thought of a few people that are currently in your life that help you each day, even in the littlest way. I encourage you to reach out to them and let them know how much they are appreciated! If you have interest in growing your circle or want to start one, as I have previously mentioned, there are plenty of ways to get involved and meet people from your area, different states, and even around the world. The ladies at CCYAN would love to hear your stories, connect with you and help in any way possible. Feel free to contact me with any questions, or if you simply want to talk!

Stay Lovely,

Erin

New Year. New Experiences.

By Erin Ard

Hi everyone! I wanted to kick off this new year by sharing more about me, my experience with #IBD, and my goals being one of your IBD Fellows!

For a snap-shot of my life, I love creative writing, drawing, vamping up old furniture, and DIY projects. You can usually find me watching a romantic comedy with a glass of wine, playing Mario Party with my roommates, cooking up new healthy recipes from scratch, or camping at my parent's trailer in central Wisconsin. I am terrible at taking pictures, so I rely on my friends to document our adventures. I love everything about fall - the comfy sweaters, jumping into piles of leaves, and pumpkin spice flavored coffee drinks. I found a love for human ecology and nutritional sciences when I attended University of Wisconsin - Madison, #GoBadgers! I have a passion for helping others live a healthy life, especially people living with a chronic disease. I am 23 and I've been living with Crohn's disease for 10 years now.

Crohn's has had a great impact on how I live my life. It has taught me a lot about myself and as much as I like to think otherwise, still affects me today. Many of my symptoms have faded but I can name a few that decided to stick around. Hip joint pain, gut pain, fatigue, random short-lived fevers, anxious thoughts, and more. Although, I'm still trying to figure out if and how Crohn's plays a role in my anxious tendencies.

I've been on Remicade for 9 years, so its normal to see small bruises on my arms from IV tubes and getting blood drawn. One of the many perks of living with Crohn's is having people point out or question my colorful arm bruises :).

Aside from medication, a healthy, well-balanced diet has been my focus since I was diagnosed. I also try to incorporate other practices to make a healthy lifestyle for myself. I have adopted mindful practice to discern any connections between Crohn's and my mental health. It has also been a great way to manage stress, especially while I was an undergrad. I also try to stay fit by doing fun exercises! For me that is yoga, Pilates, dancing, hiking, running, you name it! I strive to keep both my body and mind strong.

Although, IBD will manifest in everyone's bodies a bit differently and everyone will have different life experiences, I believe we can all learn from each other. I don't know many people with IBD and haven't had much of a voice in the IBD community yet, so I joined the CCYANetwork to connect with others and share my views. I am using this platform as a way to connect with you and find peace by bringing this source of insecurity to the surface. I hope some of you will find thoughtful inspiration from my stories.

With love,

Erin