My IBD Life: Some College Experiences

By Nikhil Jayswal

Hey everyone! I hope everyone is well and safe.

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

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

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

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

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

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

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

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

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

Denial and Acceptance

Photo by Nadine Wuchenauer from Pexels

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This article is sponsored by Gali Health.

By Rachel Straining

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Playing Pretend.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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This article is sponsored by Gali Health.

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

Navigating an IBD Diagnosis

By Samantha Rzany

Photo by morais from Pexels

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

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

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

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

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

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

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

• What are the main side effects of this medication?

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

• How long will I be on this medication? 

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

• How quickly should I notice a change?

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

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

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

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

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

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

By Amy Weider

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

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

Spoon theory

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

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

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

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

Disclosing Disease

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

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

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

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

Asking for support

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

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

Dating and IBD

By Rachael Whittemore

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

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

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

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

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

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

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

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

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

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

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

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My IBD Life: The Road Not Taken

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

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

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

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

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

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

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

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

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

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

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

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

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.