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! 

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. 

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. 

How Writing Helped Me Come to Terms with My Chronic Illness; How Finding Your Thing Can Help You Come to Terms with Yours

By Rachel Straining

As I’m sitting here now, I’m writing this in the notes app on my phone. 

I remember in high school when we had to write our college essays. Mine came to me at 12 o’clock on a random Tuesday night as I was trying to fall asleep. I couldn’t shut my brain off, which is usually a thing that tends to happen to me in the very moments when all I want to do is shut my brain off. I knew I’d have to get my thoughts out somehow, otherwise they’d consume me to the point of no sleep. I rolled over and grabbed my phone from my bedside table. I opened my notes and watched my fingers tap, tap, tap as my mind led the way. I wrote the first draft of my college essay that night on my phone. 

Now, as I sit here, writing this on the notes app on my phone, I can’t help but think about how finding a way to put my thoughts into words has changed my life and helped me come to terms with my chronic illness. 

When I was in 4th grade, I was diagnosed with generalized anxiety disorder. I had a hard time articulating my feelings. I would cry, a lot, but I wasn’t able to explain, or even understand, the “why” behind my tears. 

I was put into therapy and eventually handed a pen and paper. A narrow ruled notepad that didn’t feel so narrow at all. Rather, it felt like an open, honest gateway into a mind that at times felt all too confusing to make sense of. 

If I was upset about something, I would write it out. If I was upset at someone, I would write them a letter. Whether or not these words were ever shared was up to me, but the simple fact that writing gave me a way to process and work through my emotions was something I never had - something I wanted to hold onto forever. 

Then, when my world was flipped on its axis and I was diagnosed with Crohn’s disease, I stopped writing. I stopped talking about how I felt and I stopped writing about it. Even though every piece of me was breaking inside, I wanted to forget and pretend like I didn’t feel anything. Everything hurt. My heart ached and so did my body. I wasn’t numb at all, but I wanted so badly to be. So, in an effort to try and shut everything off and shut everything out, I put down my pen, threw my paper into the trash, and forced my heart to go cold to freeze time. 

I didn’t process the fact that I was chronically ill. I refused to. I studied or drank or exercised or ate away my emotions. I suppressed any kind of feeling, any kind of pain, any kind of grief, letting my emotions build up inside of me like a volatile eruption just waiting to happen and destroy everything within its wake. And then I flared my sophomore year of college and there was no way I could continue down the life path I was headed if I wanted to have a chance at living. 

I found an old notepad in one of my drawers that year and I watched the life before me change as I began to use my words again. I watched myself begin to open up again, no longer bottling up emotions that so desperately needed to be let out, no longer letting things eat me away inside until I felt so hollow that I became a shell of a person. I watched myself begin to connect with others by using words to which they could relate as a way to bridge the gap between loneliness and understanding that had once felt too scary to cross. In writing, not only did I find my true passion, but I also found my true acceptance. 

Especially when living with a chronic illness, one of my biggest pieces of advice is to find that thing you can turn to when you need it most. Something that will always be there for you, even when you try to push it away. It doesn’t have to be a person and it doesn’t have to be a tangible possession. Just something. For me, it’s sentences and paragraphs and poetry and prose. It’s putting my thoughts onto paper, or onto the notes app on my phone, and finding solace in the way writing helps me make sense of my truth when I find it too hard to verbally speak. 

Whether it’s the way a good song can make you feel heard or the way a good book can transport you to a different place, we all have something. We all have that one thing that both steadies and ignites our heart.  When you hold onto it, and when you harness your power through it, you’ll start to feel like you can finally take on the life that stands before you - one word or one note or one story at a time.  

5 Things I Have Learned from Life with IBD

By Samantha Rzany

Living with diagnosed ulcerative colitis for about a year and a half now, I am realizing that I have learned quite a bit from this journey. While I often wish I did not have UC, I am grateful for the opportunities and growth it has provided for me. I do not believe that I would be who I am today without having to go through the struggles that stem from being chronically ill as a young adult. 

1. Your health is one of the most important things in your life.

   It is more important than grades, or accolades, or how many social outings you can go to each week. As a perfectionist who constantly strived to push myself to do my absolute best and be my absolute best, the concept of all of those things taking a back seat to health was really difficult for me. But when you are at your sickest – in pain and in and out of doctor’s offices and hospitals, you quickly learn to appreciate the days and weeks when you are healthy. And working to maintain that health becomes a higher priority. For me, I had to realize that other things were less important than feeling physically and mentally good. 

2. Don’t push yourself.

   Your body is already working double to do the everyday things that healthy individuals take for granted. Your body fights so hard to just get up and do normal day-to-day things. It has to work so much harder than a “normal” body to do “normal” activities. Oftentimes, you will feel fatigued after simple tasks. You might not be up for things that your friends are capable of. You might know you can’t eat certain things at places your friends may want to go. And it is hard to not want to push yourself to do these things in order to keep up. But you don’t have to push yourself. You don’t have to convince yourself you may be fine if you try this, even though the past 10 times you weren’t. Which brings us to the next lesson…

3. Learn how to say no.

   There will be times you can’t eat certain things or can’t do certain things. And that is perfectly okay. Good friends and family will understand that and not treat you any differently. But sacrificing yourself to please others is never necessary. You’ll have days when you are too tired or too sick to do certain things. And that is perfectly okay!! Certain friends or family members of yours might not understand. They might not accommodate you or the things you may need. But the people who love you and are kind and understanding will work to accommodate you however you need. They won’t be offended when you have to say no to things. Some might even try to find other activities or restaurants that you are up for! These are the people you want to keep around. But there is no shame in having to say no to people or activities. Saying no means you have enough self awareness and understanding to know what you can handle. 

4. Know your limits.

   You have to learn what you can and can’t do – both when you’re flaring and when you’re in remission. Know what you can eat, how often you can go out, and how much you can do every day. You will have your limits. And those may change every week or every few days. They certainly will change between when you’re healthy and when you’re sick. And it’s important to work to keep track of what those limits are. It may mean only going out once or twice a week and getting together with friends/family at your place other days. It may mean not being able to go to certain restaurants when you’re flaring because you can’t eat anything there. It might mean feeling up to go out and being an hour into it and feeling too tired or sick to keep going. All of that is perfectly fine! You just have to know what your body is capable of and not compare that to anyone else. 

   And most importantly…

5. Give yourself grace.

   There will be days you’ll get frustrated. You’ll be sad and angry. You’ll be hurt by how people respond and sometimes you might just want to feel normal again. But you have to learn how to give yourself grace. Your body is capable.  Even when you were at your sickest, you made it through. You are strong and brave. And you need to give yourself grace. When you have to say no to things or aren’t feeling up too what you used to be able to do, you have to give yourself some grace. Comparing yourself to others your age will never be beneficial. Instead, remind yourself of how strong you are and how much you have overcome. Allow yourself to put yourself first sometimes and make your health a priority. 

Relaxing with Crohn’s

By Simon Stones

R&R… rest and relaxation – a concept I have long struggled to grasp, but one which I have learned to embrace, and enjoy over the last few months while being in lockdown.

Life in lockdown, because of COVID-19, has been a new and uncomfortable experience for many. Though for many people, like me, who have experienced isolation because of ill health, there has been a sense of familiarisation with what it’s like to be in isolation. Having your freedom taken away from you… being told what you can and cannot do… feeling cut-off from friends and family… worrying that your life is at risk. These are all experiences which so many with chronic conditions like inflammatory bowel disease (IBD) can understand, though in 2020, the wider population have had a glimpse of what that life is like, and how unpleasant and distressing it can be.

Having been unable to do so much because of ill health during my lifetime, it will come as no surprise that if I am well and able to do something, I certainly will do – even if I have to suffer the day after, because I overdid it on a ‘good’ day. I’m pretty sure that most people with chronic conditions have been there! We are told to overcome this pattern of activity by ‘pacing’. To some degree, I try to pace my life, but in reality, it’s not so easy! When you’re feeling unwell, you rest… when you’re feeling better, you try to cram as much in as possible. Life is so busy, and it’s difficult, especially after periods when you had no choice but to feel disengaged from the world, to not want to squeeze in as much as possible. After all, with conditions like IBD, you never quite know when the next flare up may happen. I have been entirely guilty of this – and hold my hands up! Over the last few years, my health has generally been okay. I have daily struggles, and have to manage pain, fatigue and other limitations, but I am generally able to function. This has meant that I’ve been working full time on my PhD, working part-time in a freelance capacity and volunteering tens and tens of hours per week, on top of caring for my late mum, housework and socialising. It’s safe to say that I was driving through life at 100 miles per hour, not necessarily realising the impact of trying to squeeze everything in.

I started to re-prioritise commitments in 2019 as I started to care for mum on a full-time basis during what would be her final few months. While caring for mum full-time, I was still trying to balance a full-time PhD, part-time freelance work, and volunteering – mostly because I didn’t want to let people down, and also because I struggled to say ‘no’. I decided enough was enough in July 2019, when I found myself sat up working in the middle of the night, every night. I felt totally drained. Despite loving what I do, there was no time needed to decide on my number one priority – mum. I suspended my PhD and stepped away temporarily from some voluntary work, keeping some freelance work ongoing to help me pay the bills. Sadly, mum passed away in November 2019, and I didn’t return to my PhD until February 2020, just as COVID-19 escalated. That’s when I really was forced to slow down. All of the conferences, meetings and events in my diary were cancelled, and from March 23rd, the United Kingdom went into ‘lockdown’. I was initially on the ‘shielding’ list and was told not to leave the house for a minimum of 12 weeks. As time went on, guidance from the British Society of Gastroenterology downgraded my level of risk to ‘high risk’, given that I was on biologics but not experiencing a flare, so technically I didn’t need to shield, but should try to do so where possible… which I did. 

“Slow down and enjoy every day. Life goes by way too fast.”

I decided that I would be staying at home, full stop. It was the right decision for my own health, my dad’s health (who lives with me), and others in the community. The hardest part of course was not seeing family and friends, but we’ve all been in the same boat. 

However, it was during the weeks and months that followed that I really slowed down. Surprisingly, lockdown enabled me to prioritise myself – something which I seldom do. I was now able to do things, just for me, without feeling guilty. It prompted me to stop, think, and remember that it’s not always a good idea to burn yourself out! During lockdown, I have learned to change my pace of life, and I have found surprising benefits on my physical and mental health. It has been nice to be more flexible each day. Don’t get me wrong, I do like to have some structure to the day, otherwise it’s very easy to get nothing done. However, it’s nice to be able to more or less shape my day around what I want to do. Although I have been working on writing up my PhD and doing other pieces of work, I have made more time for myself. Here’s a little flavour of some of those activities…

Yoga

I took up yoga a couple of years ago, but I never kept it up… until lockdown. Admittedly, my activity levels decreased quite a bit during lockdown, especially during the start when I didn’t even go outside for a walk. I felt as though I was seizing up, and so I decided to pick up from where I left off with yoga. I had the mat and the rest of the gear at home, so all I needed was an app. I came across the ‘Down Dog’ app, which was offering free access to all of its content during lockdown. I decided that I would try to do yoga for at least three mornings each week, though I found myself doing it every morning! It quickly became a way for me to ease myself into the day, stretch and loosen up my aching body, focus on my breathing, and ‘be’ here in the present. If you haven’t tried yoga, then I would seriously recommend it; though you may prefer pilates, or something completely different. The most important point is to find something you enjoy and have a go. I’ve noticed the benefits on both my physical and mental well-being, especially over time.

Gardening

I never thought that gardening would be on my list of hobbies that I would enjoy, but there we have it – you can even surprise yourself! We’ve had some beautiful weather during lockdown, and I was fed up of my lacklustre garden, so off I went to transform it! The fences and sheds have been painted, the lawns have been cut, borders and edges have been added, and there are flowers left, right and centre! What a difference. There’s definitely a sense of pride when you see a transformation happen before your eyes – especially one which you have influenced. It was also just a joy to be outdoors, in the fresh air, after being cooked up inside the house. I found it relaxing to be amongst nature – as well as topping up my vitamin D!

Getting outdoors

Once I felt it was safe to do so, I took myself to one of my favourite places, just 15 minutes away from where I live. The views are spectacular over my hometown of Bolton, Manchester and beyond. It’s all so quiet and peaceful – which is just what you need amidst the chaos and misery felt during this horrendous crisis. I realise that I’m incredibly lucky to live in a beautiful part of the country like this – something which others don’t have, though I hope others can find a little haven – whether that be the garden, a local park, or balcony. 

Getting crafty

I used to love arts and crafts as a child, so taking this up again was nostalgic, and resurfaced lots of lovely memories of times spent with mum. My favourite card shop closed during the lockdown, so I decided to make my own! I dug out my craft box of ‘bits and bobs’, searched for some ideas online, and had a go at making a few different cards. As you can see, they were simple but effective (or at least I thought so!) I also really enjoyed just doing something, which required my focus and attention, but distracted me completely for everything else going on around me. After all, isn’t that the whole point!?

Totally chilling out

I’m not going to make out that I’ve been super productive throughout lockdown, because I really haven’t! For the first time in ages, I’ve read for pleasure – instead of reading textbooks and research articles. I’ve also gone through lots of films and TV programmes – who doesn’t love a good box set? Having total chill out days, or ‘duvet days’ as I like to call them, are the perfect tonic when you don’t have the impetus to do anything productive.

Sometimes, it takes certain situations to make us re-think the way in which we live, and I know the last twelve months have certainly prompted that for me. I am looking forward to spending time with loved ones, and eventually getting back to doing what I love to do, when it is safe and sensible to do so; but until then, I will carry on as I am doing. I will, however, be trying to continue a slower, more paced way of life, making sure it is filled with the people, experiences and opportunities that I love the most. I hope you can do the same too.

Life Hacks: What Happens When You Age Out of Your Parents’ Insurance?

By Rachael Whittemore

Photo by Michaela from Pexels

You’re done with undergrad, finally got a job you wanted…maybe you went back to graduate school, but, anyway, you’re really getting a hang of this “adulting” business when BAM! You turn 26 and you’re officially kicked off your parents’ insurance plan. In the US, the Patient Protection and Affordable Care Act (ACA) aka Obamacare was enacted in 2010 and, as part of several mandates, upped the age we could stay on our parents’ coverage to 26. I’m pretty sure this was helpful to pretty much ALL young people. For example, my dad started working for the state of North Carolina during this time, and I was able to stay on his Blue Cross Blue Shield (BCBS) plan, which had decent coverage. I was covered by this plan as I went through visits and testing for my ulcerative colitis (UC) diagnosis and was very thankful that the expenses I had to pay were largely covered. I will say that my parents were paying the yearly premiums and any bills that came directly to them; our deal was that I was responsible for any bills that came directly to me and for all of my visit and prescription costs. Now that I’m completely financially independent, choosing health insurance and paying for it is solely up to me.

Let’s go back to 2018 - my 26th birthday was quickly approaching in September and I was thankful I was also starting PA school that summer – I knew there would be a school insurance plan I could enroll in once I was kicked off of BCBS, but didn’t really look into my other options until I started experiencing all of the costs and tedious parts of navigating US insurance plans. I’m here to share some about that experience but also to give you some tips about what types of plans you can enroll in and how to be savvy and advocate for yourself when you invariably get mail from your insurance company one day and you’re like, “WHERE DID THIS COME FROM?!” As someone with a chronic illness and who has specialists I see for other medical surveillance, I have experienced new challenges from navigating the health insurance plan world on my own. First, skim this article for some health insurance 101 so you can better understand some of the terms I’ll discuss below if you weren’t already aware: link

Tip #1: Look at all your options.

If you’re working, see what insurance plans your employer offers if they are required to offer coverage. Look at the healthcare marketplace at healthcare.gov to compare plans.

• If you’re a student, look at your student health plan but realize this is typically just medical – if you need dental and/or vision coverage, you usually pay additional costs and it can be pricey and not worth it on our budgets.

• Also, if you’re a financially independent, single student over the age of 26, look into Medicaid in the state you live in. You should easily qualify because your only source of money is from loans and that doesn’t count as income. Feel free to call your local state center for Medicaid as they can inform you about your options for various plans if you qualify. Medicaid

• If, by chance, you served in the military prior to being diagnosed, you might qualify for health insurance covered by the Veteran’s Affairs healthcare system. See if you might be eligible here. If your parents are currently in the military, you should qualify for Tricare until you’re 23 if you’re a full-time college student. If not, you’re kicked off at 21. Fun Fact: The VA system is the closest thing we have to a true socialized medicine in the US.

Tip #2: Understand basics about health insurance plans.

I know this is annoying, but it is really helpful to understand basics because it will allow you to see what plan best fits your needs. Know the difference between plan types like HMOs and PPOs, if your plan(s) require referrals to specialists, what your monthly premiums are and what your out-of-pocket deductible is if you have one (you will probably have one).

• Pro tip: Most of us with chronic conditions do not want a high deductible plan because you will be paying thousands of dollars before your insurance will cover visits, testing, meds, surgeries, etc. Usually, people in our situations will have a plan that has higher monthly premiums but lower out-of-pocket costs for everything else since we utilize the healthcare system more than the average young person.

• Know your co-payments for various visits and prescriptions. This varies depending on your plan and what they have determined for visits such as primary care, specialists (hi there, GI providers!), ER, etc. This is typically required regardless of your deductible and coinsurance. Prescriptions are typically tiered and have predetermined costs. Your insurance card or brochure should detail this.

• Know what your coinsurance is. Co-insurance is how much your insurance covers + what you cover once your out-of-pocket deductible has been met. My dad’s plan was a PPO with an 80/20 co-insurance. This means that once our deductible was met, I went for a visit, everything was billed and the claim was filed. Our insurance *typically* paid 80% of that bill and then I had to cover the remaining 20% unless it’s considered preventative care.

• Example: My current student plan is through United Healthcare Student Resources. The entire cost of the plan (all the monthly premiums together) goes into my cost of attendance for my PA program and is about $3400/year. I have a $500 deductible I have to meet before my insurance will start to pay for anything that’s not considered “preventative care.” After I’ve met my deductible, my coinsurance is an 80/20 – I pay 20% of the bill once the claim has been filed and comes back. And guess what else? If something isn’t covered under my plan’s benefits, I pay out of pocket for it.

Tip #3: Know your benefits!

This is honestly closely related to tip #2 – once you understand a little about the various costs that go into what plan you are thinking about, KNOW YOUR BENEFITS!

Every plan has an outline of what is covered/not-covered and is commonly known as an EOB (explanation of benefits). This outline should also tell you what falls under “preventative care”, which includes things like yearly physicals, Pap smears, STI testing, depression screening, flu shots, etc. That should be covered by your plan at no cost to you.

Tip #4: Your plan won’t disclose everything in your policy.

Refer back to #3 – know your benefits, but know that your plan likely will not disclose every little thing they will cover in the outline of your policy.

This is where things can get annoying and frustrating, at least in my experience. Because not everything can be outlined (and we understand that to an extent), sometimes you open a claim letter in the mail and see an amount you owe that literally makes you cringe and wish our healthcare system was completely different. This is when you should….

Tip #5: Don’t be afraid to question any claim/bill you get!

I cannot stress this enough, especially when I have multiple medical visits throughout the year, several of which are to specialists. I have caught errors made by my insurance company or even the practice I was seen at and saved myself money, which as a poor graduate student – let’s face it – really matters. Look at what you were billed for (the visit, tests, etc.) and if it was covered (even as part of your co-insurance) or if it was outright denied. If you’re totally confused as to why something wasn’t covered…

Tip #6: Don’t be afraid to call your insurance company and go through your claim/benefits.

It literally pains me to type this, because I’ve spent more minutes than I want to admit on the phone with insurance companies (both as a patient and from my previous jobs in the medical field). However, you sometimes can’t get to the bottom of a particular coverage denial unless you talk to someone about your claim. Look at this as advocating for yourself as a patient and making sure you’re not getting overcharged or denied something that should be covered.

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I could go on and on with other tips, but what I just wrote above might seem overwhelming. That’s ok. Sadly, we all have to learn how to navigate this system in the US unless something drastically changes in the future. And now back to my own story - currently, I still have my school’s insurance plan until July 31, 2020. I recently enrolled in Virginia Medicaid that includes dental/vision (yessss!). That will be my new/bridge insurance until I get a job after I graduate in December. Remember to do your research and feel free to call the ACA’s marketplace, Medicaid, the companies offered through your employer, etc. People are there to help you and can give you info that allows you to make the best decision for your health going forward. 

Confined with Crohn’s

By Simon Stones

Like millions of people around the world, I am doing my bit to control the COVID-19 pandemic, as well as my own health, by staying at home. What seems like torture for many is actually a relief for me – even though I may be getting a bit fed up of being forced to stay in after a few months.  

Having followed posts on social media over the last few weeks as more and more countries have imposed ‘lockdown’ measures, I’ve grown increasingly concerned for people’s physical and mental health – having quite literally seen people breakdown and unable to cope after a matter of days cooped up in their homes. For some, they’ve never had to experience being forced to do something they don’t instinctively want to do. For others, it reignites the memories of past traumas when they were forced to stay at home – perhaps during their diagnosis of IBD. But finally, for some, home isn’t the safe place that it is for many of us, and we need to recognise that and try to support those individuals as much as possible.

During these unprecedented times, we’ll experience a whole raft of emotions – fear, anxiety, anger and frustration being right up there at the top. However, being the optimist that I am, I think there’s going to be an awful lot of things which society will learn from this pandemic as a whole – and even more things which we’re going to learn as individuals, which will make us re-evaluate our lives and actions – hopefully for the better.

Nobody likes being told that they need to do something – it goes against our instinctive behaviour to be social and independent. However, it’s for our own good. As somebody taking biological immunosuppressive treatment to manage my Crohn’s disease and arthritis, I know that I am at an increased risk of complications if I was to contract the coronavirus. If I have no contact with people, then I’m dramatically decreasing my risk of contracting the virus – as well as limiting my need to rely on healthcare services which are going to be stretched beyond limit in the coming weeks and months. To be fair, being at home has not bothered me one bit – I’m quite enjoying it! I have had PLENTY of opportunities to be used to this though. Throughout my childhood, I was forced to spend more time at home because of ill health, and in recent years, I’ve had no choice but to stay at home more to look after my mum. These experiences have fortunately taught me a few lessons for life. Aside from feeling happy and safe at home, my experiences have taught me to be comfortable with my own company – something which many people struggle with. They’ve also taught me to appreciate what really matters in life – your health and your loved ones, which more and more people are slowly starting to appreciate. 

While I’m coping really well, I appreciate and empathise with others who are struggling – which is nothing to be ashamed of. It’s at times like this when everyone is reminded that we’ve got to look out for each other. My door (metaphorical of course at the moment!) is always open, for people who want to chat, rant, scream, cry or sing – so please reach out to me if you just need to talk. I also thought this could be an opportunity for me to share some things which work for me while staying at home. They may not work for you, but it may be worth giving them a try!

Routine or no routine – that is the question

Some people love routine and structure to their days; others much prefer randomness! There is no right or wrong answer – you’ve just got to find what works for you. Despite being particular on a lot of things in life, I’m one of those who I guess ‘sits on the fence’ with this one. My working week tends to follow some kind of pattern, though I’ve learned to keep things fairly flexible, to fit around me. Some days, I really don’t feel like doing much, so I’ll take it easy. Other days, I’m on it from the get-go, and will fit in tons of things. The most important thing to remember is find what works for you!

Finding your activity regime

Keeping active has never been more important! Here in the UK, people are allowed to go outdoors for one form of physical activity per day. I’ve decided to not go beyond my house, for obvious reasons, and so I’ve dedicated time every single morning to finally get back into yoga – which I’m absolutely loving after nearly three weeks of practice now. It has taken the current situation to force me into practicing something until it becomes a habit – and I certainly feel better for it now. Yoga is one of those forms of activity which is great for those of us with joint problems, since you can do as much or as little as you want! I’ve been using the Down Dog app, which has a guided instructor taking you through things. Not only does my body feel better for doing it, but my mind is also feeling clearer. It has forced me to slow down, focus on myself, and ‘be’ in the present. Yoga may not be your thing, so find something that is – at least give something a try, and if it’s not for you, move on to the next!

A dedicated space to work

Having a dedicated space to work is really important. I have my computer set up on a desk in my bedroom, with the correct set up for my posture. There’s also plenty of space for the textbooks, papers and other materials to be alongside. It helps for you to have somewhere to go where you can focus solely on what you’re trying to do, which also works when you want to leave your work alone and think about something totally different!

That being said, variety is also important, especially when you’re sat in the same spot, looking at the same screen (and the same wall behind it for me) more or less every day. So, I’ve agreed with myself to use my desk as the place where I’ll write my PhD thesis. For everything else, such as dealing with other emails, charity work, and other computer tasks, I’ll use my laptop at different places in the house. Sometimes it’s on the bed, or at the dining table, or sat on the sofa, or even in the garden! These aren’t ideal places to be, especially for your posture, but it’s sometimes nice to have a change of scenery.

Keep yourself fed and hydrated

While some people may find that they eat and eat and eat while they’re at home all the time, I’m actually the exact opposite! Especially when I am working, I often slip into the habit of doing ‘just a bit more’… and before I know it, it’s 4pm and I’ve still not had any lunch – which is no good! So, I’m really disciplined with myself now and ensure that I always set time, away from the computer, to have breakfast, lunch and dinner. Making sure you keep yourself hydrated is also really important – which may mean cutting back on the coffees! I’ve switched everything to decaf now so I can enjoy a cuppa without making myself more dehydrated. I’ve also been tracking my fluid intake on my Fitbit app (as well as calorie intake) which does force you to keep up with what you should take each day.

Take breaks, and don’t feel guilty

This is a big one! You may feel under pressure to be working every hour while working at home – but that really doesn’t work. I tend to break my day up with breaks here and there – sometimes it may just be going to the kitchen to get something to eat or drink, but sometimes it could be 30 minutes or an hour spent watching some TV, or reading, or listening to some music. Whatever it is, make sure you do it! You’ll find you work so much better during short, focused periods of time, when your mind can be on the task you’re working on.

Stay connected with others, as much or as little as you want

It’s really important to stay connected with loved ones, acquaintances and colleagues, especially at times like this. I often speak with family members and mum’s friends several times a week over the phone, just like I chat to our neighbour over the fence when we’re both near the side door. Friends tend to message and video call, which is always nice. We have to look out for each other. It’s also fine to sometimes switch off from the outside – we need that too. I sometimes ignore phone calls during the day, especially when I’m busy working. Keeping connected is important, but I also have to work at the same time, so multiple interruptions each day for an hour phone call at a time isn’t always helpful! Don’t feel guilty – I usually drop them a message to say I’ll call them later, unless something is wrong!

Making the best of a bad situation

Nobody would wish for what’s happening to the world right now – but sadly, a lot of it is out of our control. The control we have is to follow guidance, stay at home, limit our contact with others, and ensure we act responsibly when it comes to shopping and using healthcare services. What we can control is our thoughts and actions. It’s not easy by any means, but it is possible. How can you make the best of a bad situation? What can you now do that you’ve been putting off for ages? How can you use this time wisely to focus on yourself and your loved ones? These are all things that are in our control. Whether you take some time to slow down, or pick up a new hobby, or even plan for the things you’re going to do when the world comes out of hibernation – they’re all things that can help to pass the time. Never let the things you can’t do stop you from doing the things you can do!

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Please reach out to local/national groups and associations for help and support, even if it is just somebody to talk to. People are ready and waiting to offer a listening ear. Don’t forget to check for up-to-date information from your national Government or public health authority during the COVID-19 pandemic. Stay safe, stay healthy, and stay positive!

It's Not Just My Stomach

By Rachel Straining

It’s not just my stomach. 

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It’s the clumps of hair I had to watch fall out in the shower. It’s the fatigue that pulls you under like a crashing wave in the ocean and you have no other choice but to succumb to its current until you’re able to swim to shore. It’s the countless hours spent sitting in waiting rooms and on the cold, scratchy paper of an examination table. It’s being too afraid to eat that one food again, too afraid to go to that one place again, too afraid that it will happen all over again. It’s not just my stomach. 

It’s often just as much mental as it is physical. It’s often just as much whole body as it is, in my case, intestinal. 

I think that’s the thing that a lot of people don’t know about inflammatory bowel disease (IBD). I think that’s the thing that people without it will never know unless we say it - that it affects a lot more than just our “stomachs.”

It’s something that’s hard for others to understand because an invisible illness inherently brings with it invisible side effects that remain unseen. It’s something that’s hard to talk about because there’s this socially constructed stigma around it. That’s why I think that it’s something that we have to talk about, on our own terms, in whatever way we’re comfortable. 

Because the more we do, the more we can break that stigma for ourselves and for anyone else who is silently struggling and feels like they’re alone because no one else is talking about it. The more we make the invisible visible, the more we can gain back that power. The more we bring light to our darkest struggles, the more we can help guide others to see the moon. The more we illuminate the truth, the more we can live it.

Because the thing is, it’s not just our stomachs. And it’s time for people to know that.  

And yeah, there are days when I can put on a fire outfit and a hot red lipstick and stand tall in the face of everything that’s tried to tear me down. But that does not, and will never, take away from the reality of what I’ve gone through and what I’m going through. 

Even when others can’t see it, it’s not just our stomachs. 

It’s the fear of the future and the PTSD of the past. It’s current care and preventative care, needing to keep things under control now while simultaneously trying to make sure things don’t spiral out of control down the line. It’s attempting to gain control over something that can have a mind of its own. 

It’s trying to learn and relearn a body and a soul that are constantly changing, trying to learn and relearn how to live a life that’s continuously evolving with an additional layer of unpredictability. 

It’s knowing how much this disease affects different aspects of your life, but doing your best every day to not let it define your life - to not let it define you. It’s working to foster a kind of acceptance that on some days it just feels like it does. It’s working to foster a kind of belief that on days it feels like it defines your life, it doesn’t mean it will forever. 

Living with IBD brings with it different things for different people. But I think that, at its core, we can all agree that it’s not just our stomachs. We can all agree that everyone is going through something that others may know nothing about. We can all practice a little more empathy and implement a little more kindness because of it.

“The more illuminated the truth, the more we can live ours.”