A Capital Mistake

Disclaimer: These are my views and observations, based on my experience with online Inflammatory Bowel Disease support groups in India.

 “It is a capital mistake to theorize before one has data. Insensibly one begins to twist facts to suit theories, instead of theories to suit facts.” 

~ Sir Arthur Conan Doyle, Sherlock Holmes

When I began my fellowship at CCYAN, I was a stranger to patient advocacy. I had a very vague idea of what the word meant. A couple of months later, I began a local initiative to explore the possibility of building a patient advocacy group for the Indian IBD (Inflammatory Bowel Disease) population. I started by imitating and trying to replicate the actions of existing advocacy groups in the US and the UK. However, it didn’t work. I soon realized that there is a larger fundamental problem that has to be addressed before I speak up for anything. It is the problem of patient education and health information. 

Patients in India are far less aware and informed about their condition than patients in the developed nations. A higher rate of illiteracy, language barriers, lack of counselors, and short consultation times are major reasons. While it may seem that this problem can be rectified easily by disseminating educational materials among patients in various ways, the reality is that the void created by a lack of information is not a void at all. My observation is that the void has been occupied by incorrect and unsubstantiated information that prejudice a patient’s mind when it comes to learning and accepting correct, evidence-based information about their condition. This “defect” in the knowledge that a patient has about their condition can lead to deterioration of their condition and, in some cases, prove to be fatal. 

The lack of patient education itself is a mechanism through which misinformation spreads. Existing patients with defective knowledge pass it on to the newly diagnosed. In the absence of rectifying sources/agents, such information can propagate and spread among groups of patients - very much like a virus. One of the places where things go “viral” is social media. The networks that connect us all are one of the pathways through which information that has no factual basis propagates.

In India, we have a small, but a fair number of Facebook and WhatsApp groups of patients suffering from Inflammatory Bowel Disease. Members of these groups exchange information daily on various topics - meds, diets, exercise, doctors, etc. I observed that there is a small subset of people, not always, but usually the creators of these groups that influence these discussions. This subset of people also acts as a source of “information” and “knowledge” for the other members.

In my experience, the majority of the discussions revolve around food and alternative treatments. Sporadically, there might be a discussion on the unaffordability of biologics, the struggle of young adults with the condition to get a job, study, or get into a relationship. However, these discussions are limited to a few comments, and that’s it. Several topics are not discussed out of shame. Erectile dysfunction because of IBD/surgery, anal dilation, rectovaginal fistulas, marital problems, reproductive issues - these are just some of the few issues that people seldom discuss in these forums. A support group is supposed to be a safe space, but these groups don’t feel like one to me. Nobody feels safe about opening up on problems that affect them very much because of fear of judgment and shame. The “advocates” too, rarely take any initiative to remove the stigma and taboo. We, the patients of India, with our ignorance, play a major role in keeping the taboo and stigma associated with IBD intact. The creators and moderators of such groups rarely take care to protect the newly diagnosed from misinformation. Many even float their own theories and post uncorroborated information. 

A year ago, the mother of a 31-year old patient called me. She was crying. She asked me to visit her son and counsel him. I received her call a couple of weeks after I had moved to Bangalore for my graduate studies. I was unsure, but I went to her home and visited her son. He was lying down on the bed, with a heavily bloated stomach and a hot pack on his abdomen. I started talking to him. He told me that he had been diagnosed with Crohn’s disease 7 years ago. Initially, he was prescribed Pentasa, which he took for two weeks only. He did not feel that he was responding to the drugs, and hence, he stopped taking the medication without consulting his doctor. He never visited his doctor again.

On the advice of “advocates” and “experts” on the internet, he began buying and consuming naturopathy products, special brands of water with a certain pH, and many other products that he claimed were alternative medicine. He was importing many of these items. When he ran out of money, he borrowed money from people on the pretence of treatment and bought the products. He hadn’t seen a GI in 6 years! He showed me the results of a 3-year-old imaging test. It mentioned internal fistulas. He could not even stand up. His old mother was caring for him. Sometimes, when he would be in a lot of pain, his relatives would take him to the emergency room where he would be advised immediate surgery. He had been refusing the option of surgery every time. I spent an hour trying to talk him into surgery and explaining that an ostomy is not the end of the world. He wouldn’t budge. I returned - disappointed and angry. A few days later, I received a message from him. It said that he did get a temporary ostomy, but he’ll be going back to naturopathy to save his colon. I wished him all the best and urged him to act responsibly. I never heard from him again.

This person was ready to die instead of accepting treatment from a doctor in a structured and safe manner. He spent his time lurking on the internet in such “support groups,” where he learned various expensive and ineffective remedies for his condition and went on to irrationally and blindly pursue them. He could have avoided the surgery, had these very “advocates” told him to get back to his doctor. 

Let me clarify here that I’m not speaking against the use of alternative therapies, some of which in recent times have been supported by some studies as a good supplementary treatment option. I object to disseminating unsubstantiated information in a manner that evades judgment, analysis, and scrutiny. Science, rational thinking, reason, is how humanity has come so far. It’s the gift we have—our capacity for reason and imagination. 

Modern medicine does not fully understand inflammatory bowel disease and many other conditions. This, in turn, has become an opportunity for some people to form and present their theories which are either completely unscientific or based on some science, but completely opaque to scrutiny. These baseless theories and cures are dangerous. Desperate patients often end up losing a significant amount of money, time, and health. Such theories and their preachers often evade accountability. 

We can only fight something well if we know what we’re fighting against well. I feel that most IBD patients in India are fighting blindly. The larger population of IBD patients in India faces a wide variety of problems compared to the handful of patients who have the luxury to engage in comfortable discussions in closed spaces on social media. Those problems are rarely discussed and confronted. 

Inflammatory Bowel Disease is a complex disease. Good communication is the first step towards helping patients navigate the physical and emotional roller coaster that comes with having an illness like IBD. We must develop a culture of sharing medically verified and factual information amongst ourselves. It’ll help create a community where everyone is aware and informed. The newly diagnosed, who are often confused, shall receive appropriate guidance and support. Only then can we begin to speak up as a collective voice for matters that can help improve the quality of life of Indian patients with Inflammatory Bowel Disease. 

That’s all from my side this month. Stay safe :)

The Difficulty of Finding a Treatment

For the ordinary individual, health is accepted as a given. It’s a part of life that mostly runs in the background like a minimized window on a computer. It’s always running, keeping us alive, and impacting our physical and mental states. Yet again, for most people, it’s rare to directly confront it on a minute to minute, or even second to second basis. Instead, it emerges at the forefront of life either by active and deliberate personal choice, or when something goes wrong. When a previously silent computer program running in the background becomes unresponsive, what was once insignificant becomes a major issue. To a greater extent, when that disruptive program causes our computer to crash and lose all of our work, it’s catastrophic. In a similar way, the typical individual goes to the doctor only on the occasions when their health is compromised by infection, injury, or other issues. Plus, when our health is stable and we are well, the changes we make, like starting a fitness regime, new diet, or implementing mindfulness strategies to our lifestyle, are done by choice.

However, when you live with a chronic illness, health management becomes significantly more complex. For one, chronically-ill patients often do not have the benefit of having a lifestyle defined by stable health. Chronic illness is by its very nature unpredictable. Diseases like Crohn's disease and ulcerative colitis revolve around periods of peaks and valleys - remission and flares. Once again, living with a chronic condition transforms the nature of managing health. The process of searching for, utilizing, and adjusting to a treatment for inflammatory bowel disease, or other chronic conditions, is one of trial and error. Unlike treating the common cold or a broken bone, the path to recovery is much less clear cut. Personally, I have tried various medications across a variety of different medication classes only to discover that they were not effective for treating my particular case of ulcerative colitis. It takes constant monitoring of your symptoms, and a commitment to embracing change to successfully navigate the healthcare system as a chronically ill patient.

It’s a difficult reality that many patients struggle through countless medications, clinics, and treatments before finding relief. Simply put, when you live with a chronic illness, your health is never certain. It’s unlike managing short-lived, common conditions, because there’s no clear timeline. Patients are forced to adjust to a new normal. This new reality is a reality where an individual must persist despite burnout, despite anxiety, and despite certainty. It involves significant sacrifices in one’s lifestyle, and even identity. Confronting health is no longer a special event or a choice, instead it’s a part of the daily routine. I believe this is part of why accepting illness is full of so many emotions, and why fatigue can easily take over. Everyday, patients are fighting a difficult, and often invisible, battle while living normal lives full of other responsibilities. The process, and the challenges, involved with finding and managing treatment do not make this balancing act any easier. Thus, it’s important to recognize the difficult, frustrating, and exhausting experience of patients worldwide. After all, despite illness, set-backs, and struggles, we persist to live lives as friends, artists, and advocates.

How My Mental Health Was Affected by IBD

Mental health has been on my mind a lot lately. From hearing it in relation to the COVID-19 pandemic, to having conversations about the need for more resources for IBD patients, to dealing with my own experiences with depression and anxiety - mental health resources are perhaps one of the most underrated and underfunded sectors of healthcare. I realize this as I’ve gotten older, immersed myself in the medical field, and as I have utilized it for my own mental health after being diagnosed with ulcerative colitis (UC) in 2016. 

I bet many of you have also dealt with IBD affecting your mental health whether you realize it or not. For most of us, we were the only person we knew who had IBD at the time we were diagnosed. Some of us may not have even heard of it until we were told after our colonoscopy or endoscopy. The world around you suddenly feels a lot busier and bigger, and you feel very small and alone. Alone, wrapped up in your thoughts, your pain, your exhaustion, your fear. None of us asked for this. What did we do to deserve this?! In the days after my colonoscopy, this thought permeated my mind and I wanted to curl up in a ball and wish it all away. 

But, you can’t do that when you are a busy pre-med student working full time and taking classes! We are expected to stay strong and keep up our front that says “Everything’s fine,” when, in fact, we’re not. I had great people to talk to and that would listen to me, but I still went through a mourning process. I mourned my life before when I thought I “just had a sensitive stomach.” I mourned that fact that my diet would probably change and change again and that I maybe would have to be on immunosuppressive medication. I dreaded the future conversations that would come up when someone would ask why I had to go to the bathroom so much or why I couldn’t eat or drink something. Really, everything’s fine…

But, it’s not. CHRONIC is a word that I hoped never to hear in regard to my medical history. We now have a new label that we must carry for the rest of our lives, and it’s anything but predictable. We have to explain this diagnosis so many times we feel like it might actually define us. The reality of my UC diagnosis began to truly sink in and anxiety began to seep into my daily life. My energy and concentration was poured into reading about UC, finding a better “diet”, looking for tips on how to achieve and stay in remission, and finding some kind of outlet for my anger and frustration.

Honestly, I should have given myself a little more time to process and try to seek the help of a mental health professional. Now, I think, I should’ve thought about my IBD and mental health together rather than separately. I let myself have a little time to mourn my UC diagnosis, but I thought I needed to be strong and keep my diagnosis to myself, much like others had before me. If we don’t look sick, perhaps no one will know. Even when we try our best to be strong and adapt to this normal, our mental health often still ends up suffering. 

I think it would make such a positive difference in the lives of so many if we are all equipped with a medical and mental health treatment plan after being diagnosed with IBD, because the fact of the matter is that the mental health symptoms are just as debilitating as the physical symptoms of IBD, and they’re often intertwined. We need this kind of support as we manage our diagnosis - which sometimes can land us in the hospital or needing major surgery. I can’t speak to these kinds of experiences, but they can be traumatic in their own ways. How many failed medications or pain does one endure until they receive a potentially life-changing surgery? Thinking of the mental health hurdles that my co-fellows have dealt with and shared so vulnerably leaves me in awe of their strength. When they share what they have lived through, it also makes me sad that there was not adequate mental health services available to some of them when it could have offered an outlet for some of their pain.

Even now, almost 5 years out from my diagnosis, I take medication for my depression/anxiety and have re-established a relationship with a counselor that has experience in treating clients with chronic illnesses. I still go through the peaks and valleys of life and IBD, but, now, I’m better equipped to handle the lows when they hit or when a flare affects my mood and interest in doing things. I want the mental health support that has been so instrumental to some of my healing to be more accessible and affordable for those with IBD in the near future. 

I hope speaking candidly about mental health and sharing some of these reflections helps you feel less alone and more validated in what you’ve been going through. The process of untangling all of these emotions is normal when grappling with a chronic illness diagnosis and what that means for you and those you love. Everyone processes major life changes and trauma differently, but don’t be afraid to ask about mental health services when you see your GI or primary care provider. Finding the right mental health support could be the treatment you never knew you needed. 

The Acceptance and Struggle of a Childhood IBD Diagnosis

Being a kid is supposed to be a whimsical experience that one treasures and wants to have back. We long for those easier, good old days. But, when you are diagnosed with Inflammatory Bowel Disease at the age of 8, those childhood hopes can get lost. 

When I was diagnosed with Crohn’s disease, I did not know what it was. I remember telling my friends and them thinking I kept saying “Crow’s disease” (granted, I did have a speech impediment). Honestly, even I couldn't fully understand what was going on with my body. I felt alone, isolated, and trapped in my body. I felt frustrated because of the lack of support I felt from my peers and the lack of communication that I could provide to the people in my life. I felt confused as to whether I was being too dramatic or if I was really as sick as I thought I was. It becomes hard to trust your body and self when—for so long—your symptoms are not understood. Still today, these emotions can flood my body when I think about my diagnosis or even have to deal with unrelated health procedures. The body has a mysterious memory intact.  

 In response to these events, I have found that I tend to forget things related to it. To be honest, pretty much everything—specifically during my diagnosis phase of life—is most often a blur. Being diagnosed as a child really made me deeply struggle with the faults of reality and mortality and sickness early on. My body is easily triggered by hospitals or doctors. Whether my response bodily or emotional, I cannot immediately make sense of it all at the time. 

I often struggle making sense of my diagnosis. Being diagnosed at such an early age, the disconnect between what was real and fake is hard. How could it have such a constant effect on my life when I forget most details surrounding it?  It can be hard when you are surrounded by so many people who have such an understanding of their diagnosis and can write such beautiful lessons they have learned when most days I do not even remember what age I was diagnosed at. It is so easy to compare journeys, thinking your IBD is not as bad as the next, or that you feel alone with it. But what we can hold is that we don't have to be positive all the time. It can be painful and we can hold both the pain and the lessons we have learned. We do not have to make sense of our diagnoses. There does not always have to be a bright side to everything and that does not make you less of anything. Everyone has their bad days, whether you see them or not. Just remember that it is okay to struggle, it's okay if not everything makes sense, and we are so happy to have you here.

Planning with Crohn's

Stay with me for this one – I promise it won’t be as boring as it sounds! If you immediately switch off when you hear the world ‘plan’, or indeed ‘regime’ or ‘strategy’, you’re not the only one! There are, however, benefits to planning when you live with a chronic condition like Crohn’s Disease – and more importantly, if your plans become routines, then they’re more likely to become second nature, and you’ll find yourself doing those tasks subconsciously. Here, I will share some of my planning tips, which you may just find helpful. It’s all about finding what works for you so that you can manage to fit in all of the things you want to do, despite your health condition(s).

Smartphone apps

There are tons of smartphone apps available to help you keep lists, plan activities and so on! I keep it fairly simple, making use of macOS/iOS Calendar, Reminders and Notes (or the same apps on other operating devices). The calendar function is ideal for noting down all of your appointments. This helps for looking to the future, but also looking back at when and where different events occurred. The reminders app is an absolute lifeline for me. I have separate folders for different activities (e.g. university, health, work, voluntary commitments and so on). I add in activities, and a date/time (or location) reminder. This definitely helps me to keep track of everything that I need to do. If I didn’t, I would definitely forget! From a health tracking perspective, this is ideal as a reminder for booking in my next vitamin B12 injection which takes place every three months, as well as for when I need to ring up my doctor to arrange routine blood tests, when I need to self-inject my treatment, and when I need to order my repeat prescription. You may think that you’ll remember everything, but when you are busy with ‘life’, on top of ‘brain fog’ which many of us can relate to, it’s easy to forget. I know I have done that in the past, particularly when it came to self-injecting my treatment. I would remember that I need it on Tuesday for example, which would be the two-week dose period. However, I would have a busy day at college, would forget when I came home, and then in bed at night, I would suddenly remember, and think ‘I’ll have it tomorrow’. But then tomorrow became the weekend, and before I knew it, it may be a whole week later and I still hadn’t given myself my injection. I knew that was no good, but I just needed to do something about it – which I did!

Finally, Notes are brilliant! Again, I have different folders for a whole variety of different items. ‘Health’ is one of those. I use notes for keeping track of how I have been feeling, as well as for noting down points to discuss with my healthcare teams. I also use notes to keep track of discussions held with healthcare professionals, either face-to-face or over the phone. It’s just another good way to have information at your fingertips to help with your care, while the discussions are still ‘fresh’ in your head. 

Scheduling in rest days

We all know what it’s like to live with a condition like Crohn’s – we have so much robbed away from us. As a result, when you are feeling on the better side, you will naturally try to fit in everything that you can. I know that I have been there! Though sometimes, it really doesn’t pay off. That’s why I try to give myself time and space to just ‘do nothing’ – because I know that’s what my body needs. In pre-pandemic times, I would avoid booking in too many back-to-back travels, so that I always had some time to recover. In the current climate, I do my best to block off certain days where I’ll have meetings, keeping overs ‘free’ to do work at my own pace, and also take it easy. It’s all about being in control, as much as possible, so that you give your body (and importantly, your mind) the time and space to breathe.

Leaving the house with everything that you need

Phone. Wallet/purse. Keys. Mask! The list goes on – but it’s really important to have everything that you need to hand. As well as the usual items that most of us require these days, I also have supplies in my backpack and car for every eventuality. This includes painkilling tablets and gel, anti-spasmodic tablets to help with cramps, laxative tablets if I notice a blockage, anti-diarrhoeal tablets if the opposite happens, lactase enzyme to help me digest products containing lactose and the RADAR key to access locked accessible toilets. This list can go on and will depend on personal circumstances. I always find it best to have everything stored in one bag, so you can ‘grab and go’. It may feel excessive, but you will thank yourself later on when you’re not caught short.

Knowing your triggers and avoiding them

Although everyone is different, we all have some kind of trigger which can worsen how we feel. For me, I know that stress is a key trigger for worsening symptoms. That’s why I try to minimise stress as much as is practically possible – although that is much easier said than done! That’s why you’ll generally see me planning to do work well in advance of deadlines, for example, and seemingly ‘being on top’ of everything. In reality, it’s much harder to do, and I do find myself rushing for deadlines still – but at least I have minimised that as much as is practically possible. I am also my own worst enemy. As a perfectionist, I place huge amounts of pressure on myself to succeed and to do everything to the very best of my abilities. While it’s a good quality to have, it isn’t when it impacts on your health. So, it’s really important to be kind to yourself, and to re-evaluate your workload if you find yourself totally swamped and feeling ill. Nothing is worth more than your health.

Do you have any other planning tips which help you to live with your condition whilst getting through life? Let us know in the comments and on social media! 

There is No Right Way to Live with a Chronic Illness

I saw a quote the other day that said “There is no right way to live with a chronic illness,” and I immediately knew I needed to talk about it. Honestly, I want to get it tattooed on my forehead and shout it from the rooftops because everyone needs to hear it. 

“Oh, you have a chronic illness and you eat that?” 

“Oh, you have a chronic illness and you drink that?”

“Oh, you have a chronic illness and that’s how you workout?” 

The answer to these questions?

There. Is. No. Right. Way. To. Live. With. A. Chronic. Illness. 

There is no one right way to live. Period. 

Unfortunately, yet realistically, there can be  judgement within the chronic illness community at times. The same can be said for life in general. 

And here’s what I have to say: IBD, and everything in life, is so incredibly individualized. What works for one person might not work for another. What works for me may not work for you. What works for you may not work for your neighbor Susan or your cousin Jack and vice versa. 

Nobody should ever be shamed or put down or made to feel inferior or less than because of the decisions that they make in doing what’s best for THEM.

To think that there is one set way to live, one set way to eat, one set way to move your body, one set medication to take or not to take is to ignore an entire world that exists outside of your own.

When you really think about it, how cool is that life exists in so many different forms? How fascinating is it that I experienced this day differently than you? How awesome is it that we can find common threads that weave us together while still being uniquely ourselves? 

So, the next time someone hits you with, “Oh, you have *insert condition here* and you do *x,y, and z*? I could never.” 

Tell them how happy you are that they have found what works for them, how happy you are to have found what works for you, and how beautiful it is to simply be human.

Explaining Chronic Pain

This article is sponsored by Gali Health.

---

One of the most troubling and tricky feelings of the human condition is pain. It’s the body’s warning signal that something is wrong. It always seems to show up unexpectedly. It’s the world’s worst party guest. Seriously, it could at least bring a party gift, or an extra bag of chips and salsa to share. Instead, it interrupts the flow of midnight ragers and days of routine alike. Pain is the ultimate consumer. It takes, absorbs, and swells, without giving any of itself up. To make it even more complicated, pain comes in more hues, flavors, and shapes than can be counted. Pain is a universal experience, but the experience of pain is unique to each individual. 

There is round, smooth, aching pain that rolls around the body all day. There’s sharp, jagged pain that cuts, stabs, and leaves a metallic taste on the tongue. There’s pain that shapeshifts. It howls like a werewolf, then sizzles like the sting from an insect. I could go on, but the list of the types of pain is again endless. That said, living with a chronic illness like IBD means tasting an entire buffet’s worth of pain types. Despite the fact that pain is so specific, and individual, people often try to measure and compare pain. As a chronically ill individual, it can be frustrating to have your pain compared, and rationalized by others. For instance, people will often compare the abdominal pain from ulcerative colitis, or Crohn’s disease to a stomach ache. In reality, chronic pain is much different from everyday pain. 

When the pain from chronic illnesses is compared to pain from other illnesses, a large part of the context is ignored. Patients with chronic illnesses and pain have to confront pain oftentimes on a daily basis, and manage pain oftentimes without a totally effective treatment. The pain from a stomach ache, or a stubbed toe will eventually fade, and if it doesn’t, there is generally an effective treatment available. With a chronic illness, no such treatment necessarily exists. There is no timeline for recovery from the pain. Instead, it can be endless and unclear with multiple trials of various treatments required in order to find relief. In essence, chronic pain has no end deadline.

Despite this, the chronically ill often live normal lives everyday. Patients and pain sufferers go to college, go to work, and even to social events despite their pain. It’s especially important to remember this, because for all of its flavors, pain can be quite invisible. Dealing with pain is a challenge, and a burden, but millions of people around the world surmount the obstacle of pain everyday. Accommodations for patients make living with this weight easier, and enable us to be more active members in our communities. Still more work needs to be done to improve the quality of life for those dealing with pain. The compassionate way to treat the chronically ill, is the most inclusive way and the way that eliminates the disadvantages of the disabled. In the future, I hope all pain is treated with the utmost consideration and care for the individual. After all, if that was the case, there would be a lot less physical, and mental pain in this world.

---

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.

What to Expect When a Loved One Gets Diagnosed with IBD

Navigating an IBD diagnosis is not easy. It can be messy and emotional and very tiring. The person diagnosed with IBD will be feeling many emotions, probably all at once. But it’s not just hard on the diagnosed individual; it can be very hard on their loved ones as well. It can be difficult to figure out what to expect and what to say and how to act when you find out someone was diagnosed with Crohn’s disease or ulcerative colitis. Hopefully this article will provide some insight into what to expect when that diagnosis happens. 

The first few hours and days after your loved one gets diagnosed with IBD can be very confusing. You are processing their diagnosis, while trying to be there for them as well. While everyone processes it differently, there are likely some common reactions you can expect. Here are a few things to keep in mind:

• Be prepared to simply be there for them. Whether they want to talk about it or not; whether they want you to accompany them to appointments or infusions; whether they want someone to sit with them while they are sick. And even if they don’t want any of that, make sure that they just know that you will be there if/when they do. Be there for them when they are ready to talk to you. Tell them you are there if they need anything and be ready to back it up with your actions. There is nothing worse than empty words. 

• Be prepared for them to become experts on their own bodies. They will become very familiar with their symptoms and will likely know when something is not right. Learn to trust that. If they tell you they think something is wrong, don’t try to argue with it. 

• Be willing to learn with them. For me, I read up a lot on my diagnosis. I read others’ stories, I read articles, I read medical journals. And I wanted my friends and family to understand some of what I was learning. So, be willing to read the articles they send you. Educate yourself on their disease. Don’t be afraid to be educated. 

• Be ready for the hard days. The days when their medication isn’t working. The days when their Prednisone is making them miserable. The days when they are in the hospital. Not every day will be hard, but some will be. So be prepared when they come. Remind your loved one that it won’t last forever. 

• Also be ready for the good days! The days when they find out they’re in remission. The day when they try a food they haven’t been able to eat in a while and it goes well. The days when they feel like themselves. Just as the bad days come and go, the good days will come, too. 

• Be ready for the doctors’ appointment. Especially when your loved one is first diagnosed and they are working to get control of the disease, there will be a lot of doctors’ visits. There will be ER visits and hospital stays. There might be infusions they have to go to on a regular basis. They may or may not want you to come. Be ready to support them either way. With COVID, they may have wanted you to come and you may not be able to. If that’s the case, try to get creative with ways to make them feel like you’re there. FaceTime them, call them, text them. Do something to make them not feel so alone. 

• Ultimately, be ready for a journey. It isn’t always easy and there will be really hard days. But your loved one is now part of a community that is welcoming and ready to help when they want. There will be people that they can relate to and that can understand them in ways that someone without IBD can’t understand. Encourage them to reach out to people they see on social media. Encourage them to ask questions and not be afraid to speak up. The IBD community is a great one and people are always willing to help! 

Navigating a loved one’s IBD diagnosis can be a daunting thing. It is a lot to process and there is a lot of unknown. But by just being supportive and being attentive to your loved one, things will probably go a lot better than you expect them to. 

My IBD Life - Ode to Despair

I sat down to write this article with the intent of describing some personal experiences with my family and friends during a period of progressing sickness that eventually led to surgery. It’s very hard for me to segregate various aspects of that time. I was struggling on many fronts. Everything seems so intertwined. I probably would have managed better, if the only thing I had to worry about had been my health. Sometimes, I wonder if I could live through that again. The worst parts of that period were the nights. Serially failing medications had brought me to a point where I was living with severe chronic pain and total incontinence. Every night I would go through a sequence of muffled crying, screaming, and dancing, to wither and end up on the floor like a lifeless body. I did that deliberately to tire myself out and fall asleep. Every night it was the same routine. Some nights, the urge to end it all was too strong to resist. I dreaded the nights and took up a night job to cope. I thought if I forced my mind to concentrate on a job, it would help with the pain. I’d suffocate at work, and even had “accidents” at work, despite wearing diapers. Everyone around me in my home or outside was oblivious to what I did to myself in my room in the dark. My coping mechanisms bordered on the psychotic.  I would strangulate my body parts to make them numb. I would try to substitute the pain with another kind of pain by using an excessively hot pad. The pain was too much. The blood was too much. The nights were too long. The thing that hurt more than the pain was that every medication would make a mockery of my attempts to live. Early promising results followed by a rapid decline leading to increased symptoms were a pattern. At my core, I’m not a very hopeful person. My life circumstances have molded me into a deeply introverted and pessimist personality. My mind constantly tries to simulate everything that can go wrong and I try my best to put control measures in place. With this disease though, I was helpless. I read vehemently, but I was not a doctor. I forced myself to cultivate hope with every new medication. However, I always ended up dejected. Sometimes, I felt like a bloody soldier struggling to stand straight, kneeling on the ground against his sword, and waiting for all of it to get over.

As I started reminiscing those nights, my intents changed. I wanted to describe that cycle of hope and consequent despair to someone. It resulted in me writing a poem which I’m sharing here. 

They tell me the war is over and we won.

They tell me that the night is at last, gone.

They tell me the sun’s rising on the horizon.

They tell me, they tell me it’s a new dawn.

They tell me the same things again and again.

And each time they say it, I believe them. 

I hide from my fears, behind a translucent curtain.

Weak ropes of hope bear the weight of my pain.

Soon it all comes crashing down to the ground.

And I see them again. The blood-hungry hounds.

Dread sets into me as they approach and surround.

Every inch of me bleeds. My screams resound.

And when it’s all over, I look down from the edge.

Frail, pale, broken, and defeated, after the rampage.

No antidote to my ailment, my soul feels caged.

Desperate, I am prepared to embrace the only escape.

“Stop! Don’t!” I hear a voice break the silence.

I recognize the voice. It’s them. Once again.

They praise my resilience. Talk about Providence.

Promise me there’s a reason for my existence.

They look to infuse me with hope and faith.

They tell me tales of the fierce and brave.

Why then I don’t believe what they say?

Oh! It’s because, soon after ...

They tell me the war is over and we won.

They tell me that the night is at last, gone.

They tell me the sun’s rising on the horizon.

They tell me, they tell me it’s a new dawn.

There was a time when I tried to capture my pain in words. I was better at writing then. With time, the writing started to feel like a futile exercise. The nights never went away.  Instead, I now try to repress those experiences in some corner of my brain as I have done with other traumatic incidents that I have lived through.

My doctor once told me that there were only 2 patients other than me under his care, with a severity of disease that was similar to mine. I felt sad, but then I realized it’s a good thing that more people do not go through such experiences. However, I’m sure there are enough like me in my country which has a population of 1.3 billion, but I’m not sure if everyone is as lucky as me. The mental health of patients with Inflammatory Bowel Disease has never been a priority in the Indian Healthcare system. It’s time that we begin to provide holistic support to young adults with inflammatory bowel diseases to enable them to manage this disease better and come out of the experience with as little residual trauma as possible. 

Please stay safe and take care. See you next month. :)

IBD and Anxiety

When you are first diagnosed with Inflammatory Bowel Disease you learn quickly that the brain and gut function as one. They are deeply connected. Even if you don’t have IBD, you can look to feelings like butterflies in your stomach when you are nervous, excited, or in love. IBD has given me the superpower of identifying an instinctual trust of my gut. One thing you commonly hear when talking about how to manage your IBD is that you have to manage your stress levels. Since the brain and gut are so connected, the chances that a flare up will occur when you’re stressed are high. Truthfully, being able to manage your stress is a very privileged thing to be able to do and that’s a conversation that needs to be had. Outside forces and systems of oppression exist heavily in our world today. We are not functioning in a world that allows you to thrive and prioritize both your mental and physical health. For most people, there is always a tremendous amount of stressors that you cannot escape. Things like finances, unstable households, going to school, and working all cause a great deal of stress. 

Today, I want to specifically talk about how managing stress levels and IBD feels increasingly impossible when you have clinical anxiety and/or PTSD, as these are so often linked with IBD. 

I was diagnosed with IBD at a young age. My physical health was always prioritized over my mental health. This was more pronounced, I think, because mental health is not a thing that is necessarily often invested in for young children. As a child, it was very difficult for me to identify what I was feeling and what triggered these feelings. Specifically, with my anxiety, I did not know what a neutral state of mind meant. I didn’t know what my anxiety looked or felt like till around my sophomore year of college. After going on anxiety medication for a bit, I was able to understand what intrusive thoughts were and how they occupied my life. 

The baseline for my anxiety is intrusive thoughts, but it can also manifest itself in different ways just based on the things I am doing in my life at the time. For example, my anxiety can manifest itself in ways such as crying in social settings, having an obsession with time (i.e. constantly looking at the clock or leaving hours early for events), and, when things are more extreme, staying in my room for days on end. For me, it is so important to specifically state how my anxiety manifests because for so long I did not know what it meant. I think it is important that we normalize talking about everything that anxiety can bring with it, not just generalizing or downplaying it. So often, I think anxiety is talked about in very loose terms and given very simple fixes for how to “handle it.” This, in return, can oftentimes belittle the situation. 

When these more intense and intrusive moments occur, my IBD flares up. So, I often question how I am to manage my stress when I often cannot control my anxieties. In the past, I would become stressed when I experienced my anxieties because I did not know what was wrong. Now, they still stress me out, even though I know that it is anxiety. 

For me, and I think many others, anxiety is something that I have to constantly cope with on the daily. If I am not ten steps ahead of it, it will simply swallow me whole. 

IBD and anxiety can feel overwhelming and scary, but what has helped me is knowing that I am not alone. Having these two conditions together is not uncommon, and what feels very isolating and full of despair is not the case. Medication has helped me in the past and therapy is a forever process for me. I also keep a bullet journal of coping skills I have used in the past - identifying coping mechanisms that worked and ones that did not. This list gives me a place to turn to when I feel as though nothing could help and it's easily accessible. I have also found solace in being in a community of people who understand. Explaining anxiety or IBD to someone who has not gone through it can be very exhausting and this goes for many other varying identities as well! When I do find the energy, making art is another space for me to process my anxiety, whether that be through a conceptual piece or just painting a canvas with one color over and over again.

What are ways you cope with your anxiety?