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?

Judging Symptoms with Crohn’s

Sometimes, it feels like all gastro symptoms are inflammaotry bowel disease (IBD)-related… especially being symptomatic with IBD for so long. However, it’s not always case – which can cause a great of confusion, as well as making life just that bit more complicated!

As well as Crohn’s disease, I also have gastroesophageal reflux disease (GERD), irritable bowel syndrome with constipation (IBS-C), an internal rectal prolapse and lactose intolerance. I was diagnosed with Crohn’s disease in 2008, after several years of experience gastro-related symptoms. So, at that point, I assumed that everything I had experienced was the result of Crohn’s. What I failed to realise, and what wasn’t explained very well at the time, was that I also had GERD. I was suddenly prescribed all of this medication, without being properly informed of the purpose of each different medication.

Over time, and with the right treatment, I became more informed, and I was able to get my Crohn’s disease under control, to the point where I was deemed to be in clinical remission. This was concluded by considering blood tests for inflammation (CRP and ESR), colonoscopy and gastroscopy results, small bowel MRI scan results and faecal calprotectin results, each of them done at different frequencies over different periods of time. This happened gradually over a few years, and in the process, I learned more and more about my body. However, I began to struggle with more gastro-related symptoms, which I initially thought were a Crohn’s flare, but soon realised were not exactly the same as before my Crohn’s diagnosis. I felt bloated and constipated, I had abdominal pain, and I was passing mucus. It became clear that I most likely had IBS-C. The problem I found with IBS was that there was no quick and easy fix for it – not that there has been a quick and easy fix for Crohn’s disease, but at least I was able to take some treatment which helped control the inflammation. With IBS, I felt very much in the dark. Recommendations were an anti-spasmodic to relieve cramping, laxatives to ease constipation, and avoiding foods which seemed to make me ‘worse’. I watched what I ate very closely, and soon identified certain green vegetables as a trigger, as well as milk products, which I tried to reduce. 

Little did I know, but the milk products weren’t just a trigger for worsening my IBS symptoms, but I was also lactose intolerant. I was diagnosed in 2015 – some seven years after my Crohn’s diagnosis. This only happened after one doctor felt there was something else going on and decided to test for lactose intolerance and Helicobacter Pylori infection – and thank goodness they did! I’ve managed to cut most forms of lactose completely out of my diet since, and when I can’t, I have found a lactase enzyme supplement I can take immediately before eating or drinking something containing lactose, to help me avoid those unpleasant symptoms.

I thought that was going to be it when it came to gastro problems. Then, something else came along! Originally blamed on my IBS-C, I noticed I was struggling more with constipation, despite eating a balanced and healthy diet, and doing everything else ‘right’. A couple of healthcare professionals didn’t really acknowledge my perspective, and just said I need to take laxatives permanently – something which I do take, but often feels like a ‘quick fix’ or ‘cover the wound with a plaster’, without understanding the underlying reason for these changes. Many blame IBD, plus IBS for constipation, without necessarily looking further. It sometimes feels as though assumptions are an easier option in the medical world, but not for those of us living with these symptoms. Moreover, I had observed changes beyond those I had learned to notice by living with IBD and IBS-C. 

Cutting a very long story short, I ended up going for a proctogram which revealed I had an internal rectal prolapse – which is basically when your rectum folds in on itself. It wasn’t the most dignifying procedure – much like most gastro-linked investigations. Dignity often goes straight out of the window! However, this finding did explain the sharp shooting pains I had been having in my rectum, as well as the mucus I had been passing, the ‘fresh’ blood I had noticed, and why it sometimes felt as though there was a physical obstruction – because there was. The verdict was ‘there’s not much we can do’ – something I think we’re all too used to hearing. There are surgical options, but they come with risks and they more or less said they would not be considering that option for somebody of my age. So, I was sent away with pelvic floor exercises, and the notion that ‘I just have to live with it’ – which I do. At least I received an answer for the symptoms I had been experiencing, even if I don’t have an answer as to ‘why’ I have a rectal prolapse. My current hypothesis is that it is something to do with hypermobility, which has consistently been overlooked – but that’s a whole different story!

All of these different symptoms, and the conditions subsequently diagnosed, have taught me so much. I have learned to really listen to what my body is telling me – which is not easy but does improve with time. I’m not always right, but my judgement certainly seems to be stronger now, after all of these years with IBD, IBS-C, GERD, a prolapse and lactose intolerance. I am much better at distinguishing as to ‘what’ is causing ‘what’ – although it’s impossible to always be ‘right’! You just tune into what you are feeling, almost like detective work. You place pieces of the puzzle together to help you build the picture of what you think is happening. Your previous experiences and your observations guide you, alongside being proactive in terms of knowing clinical indicators, recognising new triggers, stressors or symptoms, and then being proactive in seeking the right input from the right healthcare professionals. It comes more naturally after years of having to take things into your own hands to get answers. For example, I now know that the abdominal pain and cramping that I frequently experience is when I am perhaps a little constipated as a result of IBS-C and my internal rectal prolapse; so I adjust certain parts of my diet and take additional laxatives when I begin to notice patterns changing, early on. Likewise, the ‘whale’ noises and ‘washing machine sensation’ immediately indicate that I’ve consumed something containing lactose without realising – like the time I ate a gorgeous cheesy pizza, and then realised I hadn’t taken my lactase enzyme… I suffered for the next few hours! 

These conditions, in one sense, sensitise us to be more receptive to how our bodies work. I don’t think I would have been as knowledgeable or as ‘switched on’ as I am if I hadn’t been diagnosed with them – and I wish more people recognised this, particularly certain healthcare professionals. I often have grievances with professionals who rely solely on certain clinical indicators for disease remission. For example, those who just use CRP as an indicator as to whether you are in remission or not. This has happened to me in the past when I was evidently in the middle of an IBD flare, but at that point in time, I was not confident at self-managing my health. As it turned out, my faecal calprotectin was off the scale, and so some additional treatment helped me out immensely. What did I learn? Nobody knows my body better than myself. Healthcare professionals can help me the most when they listen to what I am saying, acknowledge my expertise, and then work with me to identify what is really happening, and then plan with me as to what to do to help manage symptoms so that I can get on with my life, and most importantly, have a good quality of life. So, when anybody questions what you are thinking or feeling, remind them of this point, and hopefully, they will change their approach so that it is supportive, rather than a hindrance.

Thoughts on IBD in the Workplace

Please provide your most recent job history. Done. Proceed to the next page. Do you have a disability that you would voluntarily like to disclose? This can include autism, blindness, cerebral palsy, missing limbs, autoimmune conditions like lupus, gastrointestinal diseases like Crohn’s disease or IBS…I blinked, and stopped. What did I just read? 

In the past, I had always checked No, I don’t have a disability or history of disability. But now, as I start to look for Physician Assistant (PA) jobs, I can’t ignore the fact that I live with ulcerative colitis (UC) and flares can rear their ugly heads even when I take the best care of myself. I never had to sit and ponder this question before. Because of the way disabilities are viewed by most people, stigma swirls around it, leaving previously unaffected people like me unaware and uneducated about progress being made and the struggles still faced in the workplace. Disabilities are commonly viewed with negative connotations - several of my coworkers and other colleagues that live with chronic illness and/or disabilities have highlighted this and spoken powerfully against this negativity. Living with a disability doesn’t mean that you don’t have as much to offer. The people I’ve met through the chronic illness and disability community are some of the most resilient, creative leaders I know. We face our challenges and continue living and advocating against all that is physically or mentally against us - we have to draw incredible strength and grow up sooner and in ways that most others don’t. 

However, I still struggled with multiple emotions as I sat, mulling my thoughts, stuck on this page of a job application. I have never considered myself as a person “who has a disability.” I felt guilty - would those with disabilities think that I don’t support them since I don’t want to group myself with them, giving myself another label that’s often viewed as weak? Am I misrepresenting those who do have disabilities because my UC has been so mild and I am largely functional? I felt that I don’t belong in the “disability group”, but I also can’t deny that I have a chronic illness that can be disabling in a variety of ways. I definitely consider myself lucky and blessed, but I know that my UC can change throughout my life and potentially become more difficult to control. I struggled to work through these thoughts, but then thought about how my growth this year from being more involved with advocacy has given me tools to advocate for myself and to continue learning from this community. 

My options were: 

1. Yes, I have a disability, or have a history/record of having a disability

2. No, I don’t have a disability, or a history/record of having a disability

3. I don’t wish to answer

What should I choose? It had to be either #1 or #3. I couldn’t lie - I was more afraid that it would not go over well if I did get the job and had to bring up my UC later to my employer. But then, if I marked “yes”, could that jeopardize the chances of me getting interviewed or getting a job? I’ve heard awful stories about those who hid their disability from their employer because they knew it would affect them being hired or even interviewed. Luckily, I was working with another healthcare provider who had been diagnosed with lupus over the past year and was also learning how to navigate her chronic illness in the work environment. I asked her what she thought and we ended up having a candid conversation - I realized that if marking “yes” caused me to not get an interview or a job, then that job wouldn’t have been supportive enough for me anyway. Perhaps this is my stubborn streak coming through, but I hope that working in the medical field will hopefully make potential employers more understanding. However, I know that the stigma that encircles chronic illness and disability still permeates the workplace, and this fact will stay on my mind throughout my job search. 

In the end, I did mark “yes.” It is more important to me to have the chance to advocate for myself and be supported rather than hiding my diagnosis out of potential embarrassment or fear of how I would be treated because of it. Maybe this will backfire, but by being up front about my UC, I’ll feel more comfortable in my workplace. I hope that I’ll be supported enough to communicate any issues I’m having or if I do end up needing some sort of accommodation in the future. I’m very excited about applying for jobs and starting this new chapter in my life and career as a PA, but I still have much to learn about disability in the workplace. I hope by learning to navigate these waters, I can help others who may be in the same situation - questioning if they fall into the disability category or not, wondering how they should approach disclosing (or not disclosing) their condition to their employer. Since the US just hit the 30th anniversary of the Americans with Disabilities Act, I also plan to continue to educate myself and learn more about the disability community in conjunction with chronic illness. We should never have to choose between our career and our health, and I hope I can join many others who are working to make this a reality for all who are affected by chronic illness or disability. 

Emotions and IBD

There are a lot of emotions that come with the diagnosis of any chronic illness, or even any major life change. But laying on the operating table, under the haze and fading twilight of the anesthesia medication exiting my veins, I felt nothing. The echoing silence of the room was heavy all around me. I expected to feel an overflowing stream of emotions flow over me, but instead the most striking sensation of my diagnosis was emptiness. It could have been the drugs dulling my system and my perception of the world. Yet, over time, I’ve started to think that the cause of the void-like feeling around my diagnosis was something incredibly real, and not artificial. The feeling of change is oftentimes so big that it feels like nothing. 

In that hospital room, so much had changed with a simple test. The scale of the moment was beyond comprehension. My parents and I communicated without words, because anything that could have been said would have failed. All the periods, letters, and adjectives in the world would never be enough to frame that point in time. So, somehow and instead, I just knew that I had ulcerative colitis without being told. Shock, and the whole experience, was such a surreal feeling. To know that something has snapped, or broken, or ended, but to be unable to directly confront that realization is off-putting. It was easier to not speak the change aloud, because to speak it into the world would make it extra real. 

In the weeks after my diagnosis, it was as if a light switch had been switched back on. All of the fear, grief, and anger I had missed earlier suddenly now surrounded me. The trauma of illness is such a widespread and varied experience, but it can be difficult to describe and discuss. It’s isolating to feel different, and to feel like you’ve lost a piece of yourself. Health is something that most people take for granted or don’t think about. So when it’s taken away from you, its absence becomes the dominant part of your everyday life. The shift in my lifestyle to one focused on health had a significant impact on my mental health. I was in an environment, my freshman year of college, where everyone seems to be testing the limits of their independence. Thus, to feel completely dependent on my unstable day-to-day health felt unfair and tragic. 

It’s a challenge to have the energy to battle painful, and draining symptoms on a daily basis. I learned that adjusting to my illness, and all of the treatment that comes with it, was a major part of my healing journey. On top of that, I realized that acknowledging the emotions I was experiencing was an important part of accepting my illness. It’s normal and natural to be angry, to grieve, and even to be nostalgic for your life prior to diagnosis. In fact, for me, it was the first step towards opening up and connecting with others in the chronic illness community. My experiences, feelings, and my relationship towards my health has been full of highs and lows. Most of all, I’ve learned that the negative and positive emotions I’ve encountered from dealing with illness are all valid. They’ve helped me grow, learn, and evolve as an individual. Every journey is different, and that is perfectly okay.

Life Hacks: How to Break Up with your Favorite Foods

By Rachael Whittemore

Photo by Sydney Troxell from Pexels

Just like that - we’re well into summer and I almost can’t believe it. Even though it feels like it’s been 10 years since January, I’ve thoroughly enjoyed all the fresh food that comes with this season. The days are longer, the fruit and veggies are ripe and I don’t feel weird about wanting to eat some version of a salad daily. I’m even starting to learn how to garden! (TBD if anything makes it though!) However, as I think about some of my favorite summer foods, it also reminds me that for many of us living with IBD, it’s very possible that our bodies can’t handle some of our favorite foods anymore. After being diagnosed, we probably searched the internet for resources and advice on what to eat, what to avoid, and somewhere along the way we learned that what might work for you might not work for me. 

My co-fellow Lucy published a wonderful video last month about how she has learned to thrive with her dietary restrictions and how she’s managed her “break up” with things like dairy. Because having different perspectives can be helpful to all of us living with IBD, writing this was very important to me. I also felt led to write this because if you have met me, you know how much I LOVE food. Cooking food for others and sharing it provides a huge sense of community for my family and me as it does for many others. Certain foods are tied to family by culture, tradition or memories, and it can be a challenge to really stop eating foods that may have been fine before. It also may take time, especially if they were a large part of your diet pre-IBD. Here are some tips for getting away from IBD-problem foods and to find joy in what you can eat and let it nourish your body. 

1

Work on accepting that you and this much-loved food and/or food groups just don’t get along.

Living with chronic illness requires us to work through a lot, both physically and mentally. Accepting that we have a lifelong illness is hard in so many ways, especially one that can be unpredictable, embarrassing and frustrating. Accepting that I can no longer eat certain foods I love is difficult too, and we shouldn’t be embarrassed to mourn giving up parts of our pre-IBD life. For me, accepting that something isn’t working for me or my health helps me move forward as I try to live my best life. 

2

The short-lived happiness of eating said food(s) is usually not worth what comes later.

I have personally struggled with this in my journey to give up milk and cheese. I realized that I was likely lactose intolerant in college when I decided to do a month dairy-free. I didn't have IBD yet, but milk and cheese products had always given me issues. There are times when I fooled myself into believing my sensitivity wasn’t that bad, but as I have gone through extended periods of not drinking milk or eating cheese, I feel so much better. No pain, no constipation, less flares and much less bloating or gas.

3

Silver lining? There could be a certain way you can handle said food(s) or food groups.

If you can’t do cow’s cheese, maybe goat cheese works. In my case, I can usually handle regular yogurt without problems, and I will eat small amounts of it with fruit and nut butter to give my body some calcium and ~good bacteria.~ Maybe if certain veggies bother you, try cooking them waaaay down and adding to a favorite dish you like, or cooking them with no seasonings and adding them into something like a smoothie. I love to use baby spinach and greens this way! Other times, you may just decide it’s best to avoid something altogether.

4

Helllooooo substitutes!

The wonderful thing about living in an era where people are more aware of food allergies or sensitivities is that there are more and more substitutes for common food groups that you may need to eliminate.  Non-dairy, soy-free, gluten-free, grain-free, nut-free, egg-free, vegetarian, vegan...I know this list goes on and there are many I don’t even know about yet. I have recently tried oat milk and love it because it’s a little creamier and great for coffee and it’s far more sustainable than my usual almond milk. In terms of a vegetarian cheese (no lactose but does have casein), I thought all hope was lost until my roommate introduced me to this almond cheese. It’s my favorite affordable non-lactose cheese and even comes in a pepper jack flavor that’s awesome. Here’s a few links to other things I regularly substitute based on my current diet: my fav oat milk, mac n' cheese, yogurt (with dairy, dairy-free and lactose-free), almond and coconut milk yogurts.

5

Find blogs, Instagram accounts or online recipes that cater to your dietary needs.

This is something else that has been great to have on hand in our digital age. Especially during quarantine, I’ve been trying some new recipes and looking at ways I can eat the things I love without missing the things I had to give up. Sometimes you find some handy, simple tips that you end up carrying with you on your IBD-food journey. Like, who knew that coconut milk and cream created a great base for non-dairy ice cream? If you want a great online account to check out - my co-fellow Rachel Straining has an amazing blog and Instagram: @thenoglutengirl. Give her a follow and check out her amazing yogurt bowls, baked goods and realness about her journey with Crohn’s. 

6

Sorry, not sorry.

One of the most important things to do when you’re working on giving up or decreasing consumption of a food is to stick to your guns. It becomes much more challenging when you’re eating out with others and during the holidays. As tempting as it is to eat things you like and not feel like a burden to others, it’s so important that you don’t let this pressure get you down and cave (but I’m definitely guilty of this!). I’ve learned that being real about what I can and can’t eat works out both ways in the end - your body will thank you and you feel confident in the choices you’re making for yourself. You may not realize it, but it empowers your own self-advocacy. :) 

---

These are a few tips just to get you started, but know that all of us living with IBD have gone through this or are still working through it. Sometimes our food tolerances change, and as frustrating as it can be, search for opportunities to try something new or create a new version of something that you miss that still tastes amazing. I empathize with you and understand the frustration of trying to find foods and a diet that works for your needs. IBD makes life harder sometimes, but I know so many people who rise to meet all the challenges they’re faced with. Breaking up with some of your favorite foods may not seem like a big deal, but I’ve been there and I’m still there sometimes. You have no idea how much I wish I could eat chips and queso! Especially if you’re newly diagnosed, take each day at a time and I hope you can find the silver lining one day and laugh at all the times you thought eating *said food* was ok and ended up in bed at 8 pm because of it.

Grieving with Crohn’s

By Simon Stones

I have experienced some loss over the years, none more difficult and painful than in 2019, when I lost my mum to pancreatic cancer. The pain was indescribable, like nothing I’ve ever experienced. In the weeks and months that followed, I had to adjust to the fact that overnight, my life had immeasurably changed. I now had to adapt to a totally new way of life – one which felt uncomfortable, unfair, and at times pointless. 

During these times, I was reminded of the grief people experience after receiving a life-changing diagnosis, like inflammatory bowel disease (IBD). Naturally, this type of grief is somewhat different to the grief experienced when a loved one dies, but it is still a form of grief. You are grieving the loss of your pre-diagnosis life... and it’s an important, and necessary process which you must go through. 

Grief strikes each person differently. After all, we all have our own, unique ways of dealing with challenges and heartache in life. A friend recently sent me a surprisingly accurate analogy of grief, which hit the nail on the head. It shows that for most people, grief of a loss, whatever that loss may be, never leaves a person completely. The loss never goes away, but it may change over time. 

Imagine your life as a box. Inside the box, there is a ball, which is the grief you feel, as well as button which when pressed, causes pain. During the early days after your loss, everything is new. Everything is raw. The ball of grief is overwhelming, and so large, that every time you move the box... that is, every time you try to move through your life, the ball of grief cannot help but hit the pain button – constantly. This represents that initial experience of loss – when you can’t control or stop the pain that you are feeling. It is just relentless, no matter how much others try to support and comfort you. At this point in time, it feels as though the pain is unrelenting, and will be like this for the rest of your days. 

However, over time, the ball starts to shrink on its own. As you go through your life, and as the box moves, the ball still rattles around inside the box. However, because the ball is now smaller, it hits the pain button less often. In one sense, you may feel that you can go through most days without having the pain button hit. However, when the ball does hit the pain button, it can be completely unexpected – and hurts just as much as it did during the early days of your loss. This could happen when you’re in a particular place, such as at the hospital, or when listening to a piece of music that reminds you of your life before your diagnosis. It could be anything that is personally meaningful to you. 

As time passes, the continues to shrink and with it, so does the grief for the loss we have experienced. However, we never forget the loss that we have experienced. We must acknowledge that there will be days when the ball does hit that pain button, and when it does, we must be kind to ourselves. 

“We must accept sadness as an appropriate, natural stage of loss.” 

Upon reflection, it’s quite easy to see how this analogy somewhat resembles the process we go through after loss. I’ve certainly seen it after the loss of my mum, but also thinking back to when I was diagnosed with Crohn’s disease. I’ve also observed this with other people I’ve met along the way living with a variety of chronic health conditions. However, the process isn’t straight-forward – nor something we can plan for. It’s personal for each and every one of us. 

In 1969, Swiss-American psychiatrist Elisabeth Kübler-Ross introduced the five stages of grief model. The model describes how people experiencing grief go through a series of five different emotions: denial, anger, bargaining, depression and acceptance. While the model has received criticisms, Kübler-Ross said that she regarded these stages as reflections of how people cope with illness and dying, rather than reflections of how people experience grief. What is certain is that these stages are not linear and predictable. 

Let’s start with denial. Can you remember the thoughts that went through your head when you received your diagnosis? Denial is an entirely normal reaction to rationalise those overwhelming emotions that we experience. You can almost regard denial as your human defence mechanism to when you receive that shocking news, and when you begin to think about what you have lost. 

Then there’s anger, which often consumes our souls once the denial starts to diminish. As the pain of the realisation sets in, and as your senses begin to heighten to your surroundings, those feelings of intense frustration and grievance set in, as we start to search for blame. For some, the anger may build up internally, whereas for others, their response mechanism may to be to lash out at everyone and everything around them. 

Along comes bargaining at some point. You know, the stage where you think, ‘What if...’ This serves a really important purpose – and often a temporary escape from the pain you’ve been experiencing. For there may just me small, tiny glimmers of hope, amidst the chaos and despair. 

There’s also depression. In the past, I’ve sometimes felt scared of the term – or rather, the label that can exist in society. But what’s unnatural about depression in these circumstances? It is an entirely rationale and appropriate response as you deal with a great loss. From the intense sadness, to the overwhelming lack of motivation, poor sleep and altered appetite – it’s all part and parcel of dealing with something as colossal as life-changing diagnosis. Again, the experience of depression will vary between every individual, and indeed within yourself, depending on ‘where’ you are at any given moment in time. 

Finally, there’s acceptance, although it’s certainly not ‘final’. Here, you succumb to the reality of your loss, and understand that no matter what you do, nothing can change that reality. This doesn’t mean that you are ‘okay’ or ‘happy’ with the loss that you have experienced; however, it does mean that you are getting your head around it, and are learning to live your life, albeit different, in the best way possible. 

I have no doubt that so many people living with IBD can relate to these different stages and emotions – which can often feel like one big mess, sometimes happening concurrently, and most certainly in a disordered, confusing way. There will always be days when you think, ‘I’ve had enough of this’ – I know I still have those, but they are less frequent as time goes by, and as I learn to adjust to present life. It’s a bit like being out at sea. Sometimes, the sea feels calm, and you can see the beauty in the world. At other times, the waves overwhelm us. When you feel like this, just remember to swim and look for dry land. It’s all we can really do. 

The Invisible Rights of Persons with Invisible Disabilities Act of India

On July 26, 2020, the United States celebrated the 30th anniversary of the Americans with Disabilities Act (ADA). I’ve known about the ADA for a few years now, and I think that it is a great thing! From an outsider’s perspective, what I admire the most about the ADA is its wide scope. The list of medical conditions that can be evaluated for disability benefits seems exhaustive and as inclusive as possible. Disability is very difficult to define in precise terms as it can be a very personal experience. Hence a policy like the ADA which has a wide scope of application should be adopted by every country that wishes to protect the interests of the disabled. 

The Rights of Persons with Disabilities Act (RPwD Act) is the Indian equivalent of the ADA. The full text of the Act can be accessed at http://www.tezu.ernet.in/PwD/RPWD-ACT-2016.pdf. The RPwD Act is introduced to be “An Act to give effect to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and for matters connected therewith or incidental thereto.” The definition of a “person with disability” adopted by the Government of India is the same as mentioned in the Convention - “a person with long term physical, mental, intellectual or sensory impairment which, in interaction with barriers, hinders his full and effective participation in society equally with others.” India was one of the first countries to ratify the convention. We did it in 2007. But the RPwD Act came into force only in 2016, and it is yet to be implemented by all the states of India. 

Leaving aside the poor implementation of the Act, the list of conditions that can qualify someone for disability benefits is very short and includes only 21 conditions, most of which are visible disabilities. People with these conditions are evaluated and given a disability certificate that mentions the extent of their disability as a percentage. This percentage determines the extent of support they can receive from the government. The RPwD Act lists all the rights and entitlements of a disabled person. It also lists various measures taken by the government to protect the interests of people with disabilities which include reservations for disabled persons in various areas like employment, education, land allotment, and developmental schemes. 

Ever since I began graduate school, I’ve had to speak up on several occasions for receiving appropriate accommodations. In these discussions, to highlight the seriousness of my condition, I often bring up the fact that patients with Inflammatory Bowel Disease (IBD) who satisfy certain conditions, and patients with ostomies receive Disability Benefits in the United States. However, since the Government of India (GoI) does not recognize ostomy/IBD as conditions that qualify someone for disability benefits, the university is not obliged to provide me any support. A couple of my friends suffer from multiple chronic conditions but do not receive any disability benefits, because they’re not disabled legally. 

The definition of a person with a disability as mentioned in the UNCRPD and adopted by the GoI is a dynamic one and hence, policies that are meant to benefit the disabled must be dynamic too. However, to my knowledge, there is no mechanism in place to extend the list of disabilities. Compared to the ADA, the RPwD has a very limited scope of application. Speaking as a young adult with IBD, most of us do not have insurance. We face difficulties in gaining and maintaining employment. The same is true for education. Our condition is treated as a taboo. Every aspect of our life is affected by our condition, and for those with ostomies, the problems get magnified. Is this not what a disability is defined to be? A person with a missing toe is 10% disabled according to the disability evaluation guidelines. A person with a missing colon is 0% disabled. Makes sense, right?

The GoI has recently published the draft of the National Policy for Rare Diseases 2020. The World Health Organisation (WHO) defines a rare disease as an often debilitating, lifelong disease, or disorder with a prevalence of 1 or less, per 1000 population. However different countries have different definitions. In the United States, a rare disease is one with a prevalence of less than 6.4 per 10000, and in Japan, the parameter is 1 per 10000. India on the other hand has no such parameter because of a lack of data which is due to a lack of proper health infrastructure that would enable such data collection. The draft mentions government support for the treatment of certain treatable conditions with an upper limit of INR 15 lakh or roughly 20000 USD. The government does not plan to provide any support to those with long-term conditions, citing a lack of resources, and recommends setting up digital platforms for donations. India spends less than 4% of GDP on healthcare. A lack of resources does not seem like a justifiable reason for refusing to support those with chronic and rare conditions when the fact is that India has one of the lowest expenditures on healthcare globally. 

Coming back to the topic of disability - will people with rare, untreatable, lifelong conditions, receiving zero support from the government, be able to participate in society as effectively as others? Are they not disabled as per the definition adopted by the GoI? The fact is that the RPwD act is itself disabled. It does not do justice to the millions of people suffering from many conditions that impact the quality of life, social participation, and academic and professional outlook. The fact is that most patients struggle to fund their treatment because chronic and/or rare conditions often require expensive medications and with limited or no insurance coverage, the battle to survive and stay alive is the one that most are fighting. Education, employment, and social integration are not even in the picture. 

The exceedingly slow pace of healthcare reforms and the lack of support for people with various chronic conditions that severely impact their lives makes me sad. I don’t know when the situation will improve. If in 2020, a country like India, which has ambitions of being a superpower says that it doesn’t have enough resources to support its citizens with rare chronic conditions and has a list of disabilities that includes only 21 conditions, what hope can I have? I also feel like the general population has never considered the problem of healthcare seriously. It has never been an issue during elections. So I guess, it’s us who are to be blamed. There’s a lack of unity among patient communities too. How do you rectify all these? Honestly speaking, I’m a naive person. The only thing that I can say is it shouldn’t be that difficult to come up with a system that ensures equal and unhindered access to opportunity for people, irrespective of their health condition. From my vantage point, I see a lack of motivation amongst our leaders, the healthy, and the abled population to work on issues related to the healthcare sector. I hope the situation improves in the future.

India celebrated 74 years of independence on 15th August, but young adults with chronic conditions like Inflammatory Bowel Disease are yet to be liberated from various shackles that bind them to the ground and hamper them from living a free, independent, and fulfilling life. 

That’s all from my side this month. Sayonara!

---

References

1. https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm

2. http://www.tezu.ernet.in/PwD/RPWD-ACT-2016.pdf

3. https://indianexpress.com/article/cities/mumbai/maharashtra-yet-to-notify-rules-to-implement-disability-act-6534983/

4. https://upload.indiacode.nic.in/showfile?actid=AC_CEN_25_54_00002_201649_1517807328299&type=notification&filename=Guidelines%20notification_04.01.2018.pdf

5. https://main.mohfw.gov.in/newshighlights/national-policy-rare-diseases-2020

6. https://www.tribuneindia.com/news/archive/nation/india-s-per-capita-health-spending-dismal-rs-1-657-855027

7. https://www.livemint.com/news/india/india-s-economy-needs-big-dose-of-health-spending-11586365603651.html

Frustration

By Samantha Rzany

Sam is an independent artist, check out her Redbubble website for IBD stickers or you can message her on Instagram at Samantha.rzany

It’s easy to sit and write about the positive things I’ve learned from life with a chronic illness. I can talk all day long about my journey and what it’s been like for me. I have no problem sharing details about my symptoms and side effects and the physical symptoms of my disease. But what is hard is to be honest. I find it difficult to admit just how hard it is to live with ulcerative colitis. 

Anytime I share with someone that I have a chronic illness, they often apologize. I tend to quickly brush it off and say that it’s okay and then proceed to share the numerous opportunities I have gained from my illness. But it’s not okay. And I’m not okay. Living with IBD is hard. Every single day. It is frustrating. It is exhausting. And it’s just not fair. 

As a 22 year old, I want to be able to go to my 4-day-a-week-job and return back home each day without feeling so absolutely fatigued that all I can do is lay down in bed until I have to leave the next morning. I want to be able to enjoy my three day weekends and spend time with friends and have fun. And I’ve certainly tried to do that. And it starts my week off horribly. I start my work week with my energy below 0. 

I find the spoon theory to help me explain this really well. Each person starts out with a certain number of spoons. For a chronically ill person, the number of spoons is significantly less than the average person. Every single activity (going to work, hanging out with friends, running errands, etc.) takes some of those spoons away from you. And it is very hard to refill your spoons. So when I spend my weekend hanging out with friends and having fun, I start my work week out with no spoons. I very quickly go into the negative. Until my only option the following weekend is to sleep all day everyday. 

It’s an incredibly frustrating cycle. The absolute fatigue from doing very normal things is debilitating. And people just don’t understand. They see me as lazy or a typical “millennial” who just wants to get money and do no work. But it’s not the case. I want to work. I want to go back to grad school. I have so many ambitions for my life. But I am limited. 

It’s frustrating that the medication that is putting my IBD in remission causes so many issues. I find myself seeing specialist after specialist to fix issues that all stem from one medication and one condition. I have to see a neurologist for the migraines I get. I have to see a dermatologist for inflammation in my scalp and rashes on my hands. I have to see an optometrist for inflammation in my eyes. The list goes on and on. I often joke that I’m a 22 year old in a 60 year old’s body. But the sad thing is that it’s truly how I feel. And it scares me. If this is how I’m feeing at 22, what will I feel like when I’m older? When I am 60? 

I don’t like sharing what it’s really like living with IBD. I don’t want people to pity me. I don’t want to burden people with how hard it is. I don’t want my close friends and family to be scared or upset for me. So I often put on a brave face and share my story and hope to empower others to do the same. But life with a chronic illness, especially at 22 years old, is hard. It’s frustrating. It’s exhausting. It’s overwhelming. And many times, it is incredibly lonely. 

I’ve only had IBD for about a year and a half. So I’m pretty new to all of this still. I know there will be times when it gets harder and times where it gets easier. And I’m sure I’m not the only one feeing like this. The frustration, the exhaustion… it doesn’t just go away. But I have found that talking about it helps. Talking to my family and my close friends. Sharing with those in the IBD community what I’m feeling. Even though it doesn’t take away my disease, it makes me feel less alone.