Dating and IBD

By Rachael Whittemore

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

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

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

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

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

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

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

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

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

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

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

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My IBD Life: The Road Not Taken

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

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

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

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

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

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

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

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

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

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

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

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

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.

What have you experienced as an IBD patient because of the pandemic?

Photo by Bruno Cervera from Pexels

Today the Crohn’s and Colitis Young Adult Fellows joined together to share what they’ve experienced as an IBD patient during this global pandemic. So we asked our fellows how they have been affected by the pandemic as IBD patients and this is what they want to tell you!

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“Thankfully, I’ve not had too many problems during the pandemic. My IBD is relatively well controlled at the moment, but I still fall in the group of people in England who are strongly recommended to stay at home, because I am immunosuppressed. Therefore, I haven’t taken any chances. I was able to get my medications delivered to the house, and I now have weekly food deliveries too - though trying to get a slot is harder than you think! My regular follow-up appointments at the hospital have been cancelled until further notice, but I am doing okay at the moment so there’s no need for their input. I have the IBD helpline and email address should I need them - but hopefully not! The only other problem I’ve had is arranging for my three-monthly vitamin B12 injection, which I’ve had for around 10 years due to malabsorption. My surgery has deemed this ‘non-essential’, and are only injecting those with consistently low levels. Clearly, I don’t fall in that category, because I’ve been on regular treatment for so long. They have suggested oral supplements which I would need to buy myself, but the problem of malabsorption - so the supplements are unlikely to be of any benefit.”

Simon Stones

“Though I am not on any immunosuppressive medication, I have felt heightened awareness of the fact that I have an autoimmune disease and an overactive immune system in general. When I realized how serious the pandemic was, my anxiety spiked not only because of the reality that was to come but regarding how many people dismissed the repercussions of proper, careful social distancing or #stayinghome. I was lucky that I was able to communicate with my GI provider and get refills of medications I use during flares and on a regular basis without having a last-minute visit. I only leave my house for essential needs such as groceries (once per week max), prescriptions or to get out of the house to exercise so I can regroup physically and mentally.”

Rachael Whittemore

“As someone who is immunosuppressed, I have been experiencing heightened anxiety because of the pandemic. I have been fortunate to work from home and have the privilege of having family nearby that can transport my groceries to me, but that being said, I still feel the fear and frustration upon seeing the news every day and knowing that there are many people who are not taking this as seriously as I feel they should. I began isolating before the quarantine was in full swing, because of my compromised immune system, and have only been in public to go to the pharmacy drive-in (while wearing a mask of course!). I am trying to channel my anxiety into healthy outlets, such as my art, to avoid prompting a stress-induced flare. All I feel that I can do at this time is stay at home.”

Lucy Laube

“As someone with IBD who’s living in a developing country, the major challenges stem from the lack of robust health infrastructure. Thankfully, I’m not in a flare and neither am I on any medication. However, I do have an ileostomy which requires constant maintenance. I have been facing difficulties in acquiring bags and other components of my ostomy. Luckily, I was able to procure a small amount of these components before the lockdown, but at an inflated rate. I’m also having difficulties procuring basic things like cotton and micropore tape. This keeps me in a constant state of anxiety. I am constantly checking apps to see if I can get the essentials at reasonable rates. Additionally, there is no easy access to any form of basic healthcare in case of an emergency, and that makes me nervous.”

Nikhil Jayswal

“To already live in a body and in a life that inherently holds so much unknown and vulnerability when it comes to my health, and to have that sense of uncertainty that constantly exists within myself now amplified throughout the world, to have that unknown intensified to this extent, has brought even more challenges and emotions to the surface. It feels like the unpredictability that comes with living life with a chronic illness has multiplied tenfold. I am immunosuppressed, and the only time I have gone anywhere except for my house or my backyard was to get blood work taken to check on my levels. While every precaution was taken in doing so, and it is a privilege to have such access, it was still an anxiety-ridden experience. I am incredibly grateful that I am not currently flaring and that I have the ability to be in contact with my GI provider through telehealth services, but I think it’s important for people to realize that IBD doesn’t just “stop” or “slow down” during a pandemic.”

Rachel Straining

“As someone who is immmunocompromised due to the medications I am on, I am always cautious of when I go out and am in large groups of people. With the pandemic, this caution has increased tenfold. I am fortunate enough to be staying with my parents right now. They go grocery shopping so that I do not have to go to the stores. I limit the number of places I have to go. When I do go out, I wear masks and gloves. I come home and immediately put my clothes in the washer and take a shower. I sanitize everything that I buy. When I’ve had to go for my infusions, I have to go through multiple check points to ensure I do not have the virus. All of my doctor appointments have been virtual. Although my health is not perfect right now, I am thankful to not be flaring like I was at this point last year, as I was in the ER every couple weeks. While the rest of the world seems to want to jump into reopening, I get anxious thinking about the ramifications of opening too soon. I cannot control how anyone else responds to this and who follows quarantine and who does not. But I can continue to do my part and stay at home.”

Samantha Rzany

“When you live with a chronic illness, you’re often forced to make compromises for your health. You have to take on a second job as the captain of your health. Since the pandemic began, navigating the healthcare system has become more difficult and uncertain. Chaos is a part of any illness that remits and flares, but when chaos is the defining state of the global world, it can cause undue stress. Personally, I’ve had to postpone doctor’s appointments, and alter my treatment plan to cope with our new reality. It’s been difficult to choose not to participate in activities I enjoy doing, like socializing with friends, but I know that I have to make sacrifices to protect my health and the lives of others. While I cannot eliminate all risk, I am trying to minimize my stress and focus on what I can control. I am taking precautions, such as wearing a mask, and going out for only essential needs. The entire experience of the past few months has brought health to the forefront of the public’s attention. I am hopeful that it will improve the public discourse on chronic illness, and lead to more resources in the health sphere. After all, public health is a collaborative effort, and not an individualistic one.”

Grady Stewart

As someone who is immunocomproised, I carry around the stress of potential sickness anxiety with me. Before the pandemic, I have always been transparent with people in my life about my need for them to stay clear of me if they are not feeling well . This advocacy that I was working on getting good at is now amplified x3. My remicade appointments have carried on, first I couldn’t bring anyone now I am allowed to and it’s back to normal. I feel isolated and lonely but thankful for my roommates who keep me company and my cousin who drives me to the grocery store. For me, it has been a major trigger to have the topic of conversation constantly be of health and healthcare. My hope is that this will bring a new normal. That together we can collectively make workplaces schools etc more accessible for all and that there is now a general awareness and understanding for the immunocompromised community.

Amy Weider

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My Experience as a Young Adult with IBD in Iran

Note: Ershad’s primary language is Kurdish and thus some of his original article has been adjusted for clarity with his consent.

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Hi, I'm a 19-year-old boy from Iran.

I have been diagnosed with IBD for about 9 months. It dates back to two years ago. It was in the middle of summer that the symptoms started and I was inattentive. I told myself it was nothing special but after a month, the symptoms got worse and we went to the doctor. I'd better say doctorS!! Many doctors came and went, but none of them worked. The first doctor we went to told us that it was nothing special. He wrote some herbal pills and told me to go home and it will get better in the next few days.

After a week, I saw more severe symptoms with blood. When I explained the matter to my mother, she was very upset and told us to go to another doctor quickly. We rushed to another doctor, and after a few tests he said, “Your liver enzymes have increased too much. You should be hospitalized.” We were very confused and my mother used to say, "We're here for a stomach ache, while you are talking about liver enzymes!!” The same day we went to another doctor, he also did some tests and CT scans and said let's come back after receiving the answers. The next day, after checking the results, he said that my intestines were inflamed and my liver enzymes increased. He wrote a prescription and said to take these medicines and come back for an examination a month later. After two weeks those drugs didn't work either, but my liver enzymes were at their normal level. The reason for their increase remained a secret!!!! We decided to go to another doctor. After the examination, he told us to have a colonoscopy as soon as possible. The doctor told me to go out so he could talk to my parents alone. After a few minutes, my parents came out and my mother was crying. I was very upset and asked, "What did the doctor tell you?" My parents said nothing in response. 

I started researching the Internet about my symptoms. And I wondered if I had bowel cancer? Then we went for a colonoscopy and found that a colonoscopy with anesthesia was available in another city about 300 kilometers away. We set out for that city called Tabriz. And after the colonoscopy, the doctor told us that I had IBS. He wrote me a prescription with some medicine and told me to come back for an examination two months later. During these two months, the abdominal pain was relatively good. Later, for some time, the drugs I was taking did not work and one of our relatives suggested another doctor in Tabriz. 

Finally, when we went to this doctor, he diagnosed me with an inflammatory bowel disease (IBD) through colonoscopy and some tests. And now I'm taking Mesalazine. He suggested that I reduce the amount of food I ate at each meal and increase the number of meals throughout the day, and to exercise more. He also advised me to get a good night's sleep. Following this doctor, I was able to relieve the symptoms of the disease within forty days, and my illness remained silent for four months. Once the coronavirus became global and we were quarantined at home, my sleep schedule was disrupted. And for about three months now, all the symptoms of the disease have returned. It has reached a point where my intestines are not responding to the pills. I hope that the world will return to normal as soon as possible and that I will be able to see a doctor again.

I know this disease has a negative impact on life. But I learned from these negatives that no medicine can be like “hope.”

Keep the human standing!

I learned that anyway. 

And you have to love all the time

Even in times of fatigue, illness and despair

I learned to fight forever for the life

He closes his eyes to what he have

Sometimes you have to live with peace of mind

Get rid of every battle and defeat

people love to count their problems 

But they don't count their pleasures

Always take into account what you have, not what you lose …

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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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