The Patient-Doctor Relationship

Why is a good relationship with the doctor important for patients?

Have you ever considered how your relationship with you doctor affects your health?

“There is no cure. Only control of the disease symptoms”. How many times have you heard this? How harsh does it sound, especially the first time?  

Are you ready to build a new relationship, a completely different relationship with your doctor? This relationship will be unlike any other relationship and certainly no one has experienced it again until the time of diagnosis. 

This is a long-term relationship that will evolve over time. Your doctor will know many things about your personal life, your job, your family, etc. Above all, however, over time, he or she will learn YOU, and your personality. 

And why this is important?

As a patient you have to break down the wall around you and allow the doctor to enter your world, the world of your disease and how you experience it, even for a while. Of course, the doctor must have the empathy required for that.

This will not happen overnight. It may take years to build this relationship. As this relationship begins to build, you will feel the doctor as a member of your family, you will share with him or her important moments. 

Is always the relationship between patient and doctor like that?

Unfortunately, no - however, I deeply appreciate those doctors who patiently and carefully support patients with chronic diseases. It’s nice to see a person being 100% present.

Journaling with IBD: A Focus on Mental Health

During 2020’s intermittent quarantine, what has brought me more solace than anything is the act of journaling. As someone who was diagnosed with Crohn’s disease during the pandemic, much of my hospital experience was drastically different than others. Increasingly isolated from my loved ones, I could feel the weight of my diagnosis crushing me, the four walls of my hospital single closing in. 

For IBD patients specifically, mental health is tied so closely to our physical health. I’ve had days where my physical flare-ups make me double over; it’s no coincidence that those same days, my mood swings and sensitivity levels are out of control. In fact, this phenomenon is so common that there’s an actual term for it: the gut-brain connection. 

The gut-brain connection refers to how changes in our gut can have drastic impacts on how we feel and behave. Many tend to dichotomize our bodily systems, finding it hard to believe that our behaviors and moods can be swayed by what we eat and how our gut reacts. This is explained  by what’s called ‘bi-directional’ communication, in which our gut and brain talk to each other using different pathways. 

Re-focusing energy is powerful. With enough time, journaling can become a way to channel your energies into finding peace and introspection. What’s best about all this is that journaling can take any form you want it to. It’s simply a way to get your thoughts out on the page. Humans absorb so much information and stimuli during their waking hours; life, as it turns out, can be overwhelming at any point in time, regardless of an IBD diagnosis or not. 

Journaling should be a way to relieve stress, a way to declutter your mind. I’ve found it especially helpful to process my physical and mental pain; even doodling can help distract your mind for a few minutes. Especially for patients with IBD, a journal can be a place to record symptoms, reflect on treatments, or even track what foods you’re eating (Check out this article on how to start a food diary by David, a 2021 CCYAN Fellow!)

All you need is a notebook, even just a piece of paper, and a pen or pencil. Some people find it helpful to pair a journaling session with a few minutes of meditation: this is your choice! Whatever makes you feel the most grounded and relaxed. 

Here are a few journaling prompts to get you started:

How are you feeling right now? 

What does your body need? 

What is giving you energy? What is taking your energy?

What are you grateful for, at this moment?

What are some themes in your life right now? (rest, peace, healing, etc.)

Things that feel heavy today; things you can try and release today.

What do you need to let go of in order to move forward and grow?

What beliefs and assumptions are holding you back?

What do you have to be proud of? 

Where are you feeling stuck? Where are you feeling growth?

How to Start a Food Diary

Dear Diary,

Sometimes when I eat it feels like a herd of angry buffalo have taken up residence in my gut. The rumbling, the pain, and the regret are all too familiar at this point. Maybe I just shouldn’t eat at all. Maybe that would be best. I wish it could just stop…

Okay, I might not be talking about that type of diary, but I’ve had many days in my Crohn’s journey where that could have described me. Like many people with Inflammatory Bowel Disease (IBD), I have a frustrating mix of good days and bad days. It always baffled me how I could feel good one day, but terrible the next. I wanted to know why. This started my journey of paying closer attention to what I eat, and in turn, keeping a food diary.

Why a food diary?

Our environment is everything we come in contact with on a daily basis that isn’t us. The air we breath, the things we touch, and the food we eat all make up our outside environment. If nothing in our environment impacts a disease, it should feel the same every single day. For me, and many others with IBD, this just isn’t true. In this case, we must start looking at our environment as a source of triggers for our disease.

One of the largest parts about how we interact with our outside environment is what we eat. Every day we eat a variety of different foods, from a variety of different places, that have a variety of different health effects. For me, food was an easy place to start to try to figure out some of my disease triggers. I know what I am eating every day, so why not try to see if there is any connection between what I eat, and how I feel. This led me to food journaling, and it has been an invaluable resource in helping me navigate and manage my own disease. It has given me power.

Research also backs up this idea. In one study done in 2016, one group of Crohn's patients was told to exclude either the four food types they had the highest antibodies to, while the other excluded the four food types they had the lowest antibody to. The group that excluded the foods types to which they had the highest antibodies had significantly lower disease activity and significantly higher quality of life.1 We might not have access to antibody testing, but we can certainly try to figure out what foods are worsening our disease and quality of life.

How to write a food journal

There are three main things to consider when writing a food journal: what you eat, the time you eat, and how much you eat. With these three written down, you will be able to better make connections between foods and symptoms. Let's do an example: For breakfast this morning, you ate a bowl of oatmeal with blueberries, some bacon, and a cup of coffee (I know, I know, coffee isn’t exactly known for its stellar track record in collaborating well with IBD, but it's a made up example!) How would that look?

Tracking Symptoms

Symptoms are a little trickier. Say you have some pain in your lower right abdomen, how do you know what meal might have triggered you? Was it the meal you ate 5 minutes ago? 4 hours ago? The day before? For this we need to know a little bit about how long food takes to get to each different part of the intestines, also called the intestinal transit time. In a normal, healthy adult the following is accurate:

But what if you’re flaring? Diarrhea, inflammation, stricturing, and other aspects of a flare can all impact the amount of time it takes for food to get to the finish line. Some studies have been done on intestinal transit time in IBD patients, with most finding that the intestinal transit time is longer in IBD than in normal healthy subjects.2,3,4 In one patient with Crohn's disease, it took 156.2 hours for one meal to pass through. Talk about taking the scenic route! Like many other things with IBD, you are going to have to take an individual approach and problem solve to figure out how to best match symptoms and meals. 

Resources

Tracking food can be done in something as simple as a spiral notebook, but there are also other options available. Here is a list of some apps you could use instead of a physical journal:

• mySymptoms Food Diary & Symptom Tracker (Lite) by SkyGazer Labs LTD

• Food Diary by WeCode Team

• Cara Care by HiDoc Technologies

References

1. Gunasekeera V, Mendall MA, Chan D, Kumar D. Treatment of Crohn’s Disease with an IgG4-Guided Exclusion Diet: A Randomized Controlled Trial. Digestive Diseases and Sciences. 2016/04/01 2016;61(4):1148-1157.

2. Andersen K, Haase A, Agnholt J, et al. P-113 Gastrointestinal Transit Times and Abdominal Pain in Crohn's Disease. Inflammatory Bowel Diseases. 2017;23(suppl_1):S40-S41.

3. Fischer M, Siva S, Wo JM, Fadda HM. Assessment of Small Intestinal Transit Times in Ulcerative Colitis and Crohn's Disease Patients with Different Disease Activity Using Video Capsule Endoscopy. AAPS PharmSciTech. 2017;18(2):404-409. doi:10.1208/s12249-016-0521-3

4. Haase AM, Gregersen T, Christensen LA, et al. Regional gastrointestinal transit times in severe ulcerative colitis. Neurogastroenterology & Motility. 2016;28(2):217-224.

How Toxic Productivity Can Affect Chronic Illness

“The grind never stops” is a quote I’m sure all older gen-z and younger millennials have heard. Hustle culture is like the monster hiding under our beds just waiting to attack us the moment we dangle our foot off the bed. It’s the scary email we try to avoid, but eventually have to acknowledge is there. Our society places a great amount of pressure, on our generation specifically, to work hard and constantly strive for a lifestyle in which we are operating at an “optimal level”. This is deemed as success and this version of success should always be at the forefront of our minds and influence all decision making. Participating in this hyper productive hustle culture is difficult enough for the average person to achieve, but what does it look like for people that live with chronic illness? 

To put it simply, living with chronic illness(es) is hard. Personally, it is the most difficult thing I have ever experienced. With symptoms like chronic fatigue, anemia, and anxiety etc., paired with frequent doctor's appointments and stigma, one could imagine that it is virtually impossible for chronically ill people to participate in hustle culture. Unfortunately, being in this generation makes escaping from the plague of toxic productivity quite difficult. Growing up we have all heard the stories of the business person working 60+ hours a week to bring his dreams to fruition. This mentality has influenced our entire generation. Working hard should always produce tangible results, right? Well, not exactly. As someone that lives with IBD, overworking myself can have dire consequences. Stress and anxiety are common triggers for people living with IBD, so it can be exhausting to focus on extracurriculars, staying social, maintaining good grades, and overall performing “optimally” while you’re inches away from a flare up. Our culture’s ingrained toxic productivity can be seen as the genesis of this behavior. I regularly catch myself being filled with disappointment that my illness prevents me from working at the capacity that I deem as optimal. Blaming myself for the pressures that our society puts on this generation only adds fuel to the fire, but never addresses the true issue, which is our ingrained idea of hustle culture. 

As young chronically ill people, we must stay aware about never pushing our boundaries and our illnesses in the name of productivity. Productivity is a wolf in sheep’s clothing; it seems innocent enough until it comes and bites us, and that bite for many of us is a flare. It is never a moral failing if you aren't able to operate at the same capacity as your pre-diagnosed self or other able bodied individuals. As chronically ill people, we have so many unique challenges that we must acknowledge and honor. Here is a metaphor that I often remind myself of: 

“We are all running a race, and some people are completing laps in 7 minutes, and others are completing laps in 20 minutes. Some may have to stop to breathe, sit and take a brief rest, or even leave to grab water, but the timing doesn't matter, the effort and intention does. All effort is valid.”

In the metaphor above, the race represents toxic productivity and the one’s completing the laps in 20 minutes who have to frequently stop represents chronically ill people. Giving into the pressures of hustle culture and toxic productivity will only reinforce the cycle. So, for the college student that lives with IBD or other chronic illnesses, such as myself, who is putting excess amounts of pressure on themselves to excel in every facet of life, try to be conscious of allowing yourself the space to rest and recharge. “Rise and grind'' is hard to do when the rising part is the issue. Glamorizing and internalizing the generational curse that is hustle culture and toxic productivity can cause irreparable harm to ourselves. Remember, work does not equal self worth. 

So, when you’re in bed trying to get rest and all of your responsibilities and the ghosts of toxic productivity are whispering in your ear, try your hardest to ignore those voices, turn the other direction, and get that well deserved rest. 

Intestine Resection Experience in an IBD Patient

Many individuals who face inflammatory bowel disease will require surgery at some point throughout their lifetime. There are numerous reasons why an individual may need surgery such as abscesses, fistulas, scar tissue, active disease, perforations and many more ailments. Through my personal experience, I would like to share some tips to help you prepare for your experience with intestine resection surgery. 

My intestine resection took place during the month of June in 2020 due to scar tissue narrowing my ileum, as well as some remaining active inflammation. During surgery, my ileum and a section of my large intestine were removed and my small intestine was then reconnected to my large intestine through a laparoscopic procedure. Enduring a surgery during the COVID-19 pandemic led me to experience a whirlwind of emotions. To begin, my original surgery date of May 2020 was postponed; however I was lucky to be able to receive it in June. During this time, hospitals in Ontario prohibited any visitors for adult patients, so unfortunately I was unable to have any visitors during my hospital stay of four days. I was so incredibly nervous to undergo a major surgery for the first time and knowing that I wouldn’t have any in-person contact with my loved ones, made the experience even more frightening. I knew that I would have to be my own advocate while in such a vulnerable position, a daunting feeling that made me quite nervous. Despite the fact I had many fears, I am happy I underwent surgery. I have recovered and continue to feel better than ever. During my hospital stay, I was taken care of by my colorectal surgeon and a wonderful team of nurses, and although I couldn’t wait to return home, I felt comfortable and secure while recovering in the hospital. 

Receiving a surgery as serious as an intestine resection can seem terrifying, and trust me - I was terrified. To ease my mind and fill me with the confidence I needed to undergo this procedure, I fully immersed myself in taking great care of my physical and mental health. Physically, I made it a priority to get extra sleep, stretch often, go for walks when my body had enough energy, and made sure that I was eating nourishing foods. Mentally, I talked about my fears with my medical teams and loved ones, saw a therapist to learn coping techniques and made it a priority to journal daily. I also carefully and strategically packed a hospital bag with items that I knew would bring me comfort and make my hospital stay as easy as possible. Below are the items that I used daily during my stay.

Hospital Bag Check-List:

• Night gowns or oversized T-shirts (pack comfy clothes that don’t put pressure on your abdomen) 

• Loose underwear 

• Extension cord and chargers for phone 

• Face wipes (it will be hard to shower!) 

• 3-ply toilet paper (hospital 1-ply toilet paper in the WORST) 

• Stuffed animal to cuddle 

• Cozy blanket and pillow case  

• Easy to put on slippers (you won’t be able to bend down and they are great for walking the halls) 

• Perishable snacks if you require a special diet (or don’t like hospital food) 

• Anything else that will bring you comfort or joy
  

Before my surgery, I was searching everywhere online to gain insight on what my hospital experience might be like and I was unable to find many resources. I hope by sharing my personal experience in an Ontario hospital during the COVID-19 pandemic will provide comfort and ease the nerves of other IBD warriors going through a similar experience.

The Day Before Surgery: 

Remember the prep before colonoscopies? She’s back! The prep instructions I received were extremely similar to colonoscopy laxative prep, along with a large dose of antibiotics. Your medical team may prescribe you something similar or different. Either way, you’ve got this! 

Hospital Check-In:

After arriving at the hospital and checking in, I was brought to a change room where I was asked to change into a gown and check my suitcase. After I had changed, I was brought to a pre-operation room where the intravenous was given. My biggest piece of advice while going through all of these steps leading up to the surgery is to express how you are feeling to your nurse and medical team. I was feeling extremely uneasy and expressed these feelings to my nurse and this prompted her to request an anti-anxiety medication from the anesthesiologist that I could take prior to walking into the operating room. Once in the operating room, I received an epidural. I was personally terrified of receiving an epidural, but I experienced zero pain from the needle! After that, it was easy. I was quickly put to sleep and before I knew it the surgery was done!

After Surgery:

Upon waking up, I felt extremely tired and out of it. I continued to sleep for hours until the nurses woke me up. They encouraged me to try to stand up and use the washroom to empty my bladder. Due to the epidural and medications I received, I felt minimal pain and my legs remained numb for a few hours. Although I did not feel as if I was in pain, I could make out feelings of soreness within my abdomen. Afterwards, I was left to rest and was allowed to start drinking fluids. My medical team encouraged me to eat the next day and I brought snacks for this specific reason. 

The first three days after surgery were the worst for me in terms of pain. As someone with IBD, I was accustomed to experiencing severe pain and I was able to control this pain with only Tylenol. I’ve previously been prescribed narcotics to control the pain associated with my IBD flares, so only needing Tylenol was a win in my books! My surgeon cleared me the day after surgery to begin walking the halls and moving my body. Walking was exhausting and caused me pain but it truly helped out a lot with my recovery. I was only able to stand and walk hunched over to avoid putting pressure on my abdomen which I still can’t determine whether my mind was protecting my body or if I was really unable to stand straight. This continued for about a week and each day I was able to stand up a little taller.

Returning Home:

Once I was cleared to leave the hospital, I returned to the comforts of home where I was able to have my family care for me. Stairs were unbelievably challenging and I needed support to get up and down. I was extremely exhausted for a couple weeks post-surgery and majorly prioritized rest and recovery. My biggest advice is to have a caretaker for your first few days back at home, to help you get in and out of bed, cook meals, and shower. If you are going to be alone, sleeping on the main floor and pre-making meals before surgery would be extremely beneficial to ensure you have easy access to nourishing meals. 

I found it extremely difficult to get in and out of bed - I never realized just how much I use my abs! I recommend setting up a sturdy piece of furniture by your bed, such as a chair or side table, to use to lift yourself up and out of bed with. I also found that sleeping in an upright position was much more comfortable, putting less pressure on my abdomen, causing me to stack my bed with pillows. 

Please remember, it can take some time for your body to adjust to the surgery and notice results. Since I had a narrow ileum that caused blockages and poor digestion, I thought I would immediately have better digestion after surgery. My digestion is a thousand times better as I write this, but it took about a month for me to truly notice any of the improvements and benefits from the surgery and continued to notice additional improvements months following. During this time of recovery, each day my body continued to become stronger and more resilient. 

I hope my personal experience receiving an intestine resection will help those of you who are preparing to undergo your own intestine resection. My hope is the advice I have given you will help relieve your nerves and guide you through the process, by giving you a better idea of what to expect. As members of the IBD community, we are strong, courageous and resilient! 

How My Mental Health Was Affected by IBD

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

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

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

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

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

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

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

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

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.”

Why Me? Why Advocacy?

By Rachael Whittemore

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Reading the inspiring stories written by my co-fellows and having conversations about what it means to for each of us to be IBD advocates for young people prompted me to consider the different paths that led us to our roles in advocacy. Each of us have been through times of uncertainty, emotional and physical pain, bowel preps, needle sticks, treatments and more to hopefully get us to remission and the promise of life similar to what we had before we were diagnosed. We have different interests, different educational backgrounds, come from different cultures…maybe we’re even from different countries or different areas of the same country. I know my diagnosis story and IBD journey is different from theirs, and that’s ok, but above all else, we share a bond of navigating life as young people with chronic illness.

By this point, you might be wondering - why advocacy? Before I can answer that question, I have another admission: as much as I felt that I was strong and capable and felt like I took everything in stride, I was angry at the world and at my body when I received my diagnosis (I’m sure many of you can relate!). Even though I have an immediate family member with ulcerative colitis, it felt like everything I knew about the disease went out the window once my diagnosis became a permanent part of my medical record. I took care of myself, was always active, ate healthfully, and yet I still ended up with IBD. I felt like my body had broken up with me. Feelings of shame, exhaustion, and physical disconnection came to color those first few months of living with ulcerative colitis, as I realized I would have to figure out how to navigate something that seemed entirely outside of my control.

I won’t sugar coat things – it really did take a while for me to feel like I had a grasp on what my body was experiencing, and the various things I needed to process that, both emotionally and physically. But in time, with the support of family and close friends (and meds and diet changes), I allowed myself to process my diagnosis and my own lived experience, and as a result, I slowly found ways to get my symptoms under control. Still, one question lingered: what to do next? As much as I was frustrated, I thought about how it’s hard to talk about IBD, often viewed as a “bathroom disease,” with others.  It seemed like it would never be ok for me to openly discuss IBD and I found myself struggling to figure out how to approach the various aspects of my life that were inevitably impacted by it - from social situations to work requirements. At that time, I was working in a medical office to get experience before going to Physician Assistant (PA) school. To me, there was little clarity among the general public about what IBD was, and a lack of resources for those affected. I wanted to find some way to make a difference, even if only at a small level. This is how IBD and patient advocacy suddenly took on a whole new meaning for me.

“Take a deep breath. You can take that next step…”

I did some Google searching and got involved with the Carolina’s Crohn’s and Colitis Foundation (CCF) and got to know others with IBD. I worked on our local planning committee, attended our Take Steps walk to raise awareness and research funding and, while there, noticed how many young people were walking there as patients. My overlapping time working with CCF and learning how to manage my ulcerative colitis shaped my passion for patient advocacy and education. As a future medical provider (graduation coming up in December!), being a patient advocate was especially important to me since I’d spent extra time in my own patient shoes. This has continued as I became involved with CCYAN and as I started my final clinical rotations for PA school this year.

It may seem like my path to IBD advocacy was clearer cut since I’m in the medical field. While I believe my occupation certainly gives me additional perspective, it was really the weight and frustration I experienced as a patient diagnosed with ulcerative colitis that inspired me to take something negative and use it to positively impact others. For some of you, it might take some time to come to terms with your diagnosis or even recover from being diagnosed in the first place. You might have to recoup from surgery, get used to your infusion schedule, or use more courage than you ever anticipated to get past the ongoing medical visits and unpleasant exams we go through as part of our treatment process.

At the end of the day, even if you already feel ready and able to “do something,” give yourself time to reach a healthy place - physically and mentally. From there, think about your hobbies, passions, and the resources you wish you’d had when you were learning to navigate your own IBD journey. Who knows, you might just find your own path to advocacy. Keep in mind, the word “advocacy” itself might seem intimidating, but there’s no need to ascribe undue weight to it. There are so many things, both large and small, that can have an enormous impact on others. It doesn’t matter if it’s starting an IBD group at your school or a blog about your experience. Remember, the internet can be a beautiful thing and there are many ways to share your story and have it heard and supported by people who can both empathize with and learn from your experiences, even if they’re thousands of miles away.

Take a deep breath. You can take that next step – whether it’s learning how to share some of the uncomfortable parts of your story with your friends or beginning to forge your own path as an IBD advocate. Like many of our fellows have said before, this disease is part of you, but it doesn’t have to define you. Even something as small as sharing the #IBDvisible infographic during Crohn’s and Colitis Awareness Week in December can be a great first step to give others insight into your journey and create a space for dialogue where there was none before. I’ve only lived with ulcerative colitis for four years, but in that time I’ve made peace with my “body breakup,” and I’ve learned to be thankful for all of the amazing things I’m still able to do with this body as someone who is so much more than a diagnosis. And, as more time has passed, I’ve gone from the perspective of “why me?” to “why not? Why not make advocacy a part of my IBD journey?” I hope you’ll find that, in time, you can, too.

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What I Wish I Could Have Told My Newly Diagnosed Self

By Rachel Straining

Hey. I know you’re feeling a lot of emotions right now, a lot of emotions that might not make sense for a while. You probably don’t want to listen to anything else because you feel like you’re drowning in new words and the world you once knew is breaking into pieces. But I need you to do something for me. I need you to breathe. And I need you to listen.

Let’s take a deep breath, okay? I know your heart is racing as fast as the thoughts that consume your mind, but let’s just try to breathe in, and breathe out. It’ll help. Hold onto that practice. It’ll come in handy.

Before you freak out and your mind starts spinning in a million different directions, find that steady breathe again, and just hear me out.

Your life is going to change, but you’re going to be okay.

Your life is going to change, but not entirely in the way that you think.

Honestly, yeah. There are some things that are going to change for the worse. It wouldn’t be fair to lie to you. It’s not right to sugarcoat it, because that’s not reality, and that’s not how you’re going to grow. You’re not going to grow by shying away from the hard stuff. It’s going to suck sometimes. There will be a lot of doctor visits, a lot of doctor changes until you find one who will believe and listen to you. There will be a lot of you being your own doctor and especially your own advocate. There will be a lot of tests run, a lot of blood drawn, a lot of nights and days spent in the bathroom or in bed.

But amidst the pain and the tears, and amongst the ways in which, yes, your life will get harder, here’s what will get stronger: You. Your bravery. Your resiliency. Your power. Your appreciation for life. Your ability to empathize with others. Your knowledge about and intuition towards your body. YOUR body.

So, with that in mind, here are a few things I need you to know:

At first, you may feel like you’re the only person in the world who has this disease. You’re not, I promise. There is an entire community out there of other people your age who are fighting the same battles, who understand what you’re going through because they’re going through it, too. Please don’t wait to find them.

Listen to your mom. She will almost always be right, even when you don’t want to admit it.

You are stronger than you even know and you will grow stronger every day, even when it doesn’t feel like it. That unrelenting strength will be right there, right inside of you.

Your past isn’t your present and your present isn’t your future.

Your bad days don’t equal a bad life. Your bad days are not forever.

You are going to cry and you are going to need to cry. Let yourself ride the waves and feel it all because keeping it hidden or bottled up will only make things worse.

You are going to need rest and you are not weak because of it.

You are going to have to give yourself grace through it all. It’s the only way. You are going to have to learn how to be kind, gentle, and patient with yourself.

Remember to breathe.

Find something every day to be thankful for, even when it’s hard.

You are not any less deserving of love because you have a chronic illness.

Do not settle for anything or anyone’s opinion.

You are not an inconvenience or a burden.

You can’t compare your health or your journey to anyone’s else’s.

You can’t put a timestamp on healing. Healing doesn’t happen on straight timeline and it doesn’t have a set end date. It’s complicated and hard and messy as heck. Putting in the work and putting yourself and your health first will always be worth it.

You know your body better than anyone else. You are going to have to fight for it.

You will often have to separate to elevate - from certain people, from negativity, from anything that holds you back and holds you down.

Your thoughts hold great power; thoughts become things if you let them. Both positive and negative.

Your chronic illness is an important part of who you are and what shapes you, but it does not define you.

Your story is worth sharing. Your voice deserves to be heard.

Your pain will become your power.

I guess what I’m trying to say is this: you’re going to go through a lot, but you’re going to learn from it and grow from it. You’re going to fight through it because that’s what warriors do. There will be days when you’ll feel so angry that you have this disease that all you can do is go to bed and hope tomorrow will be better. But there will also be days when that hope for a better tomorrow seems to finally exist in the present, when the anger starts to fade into the background and you feel like you can not only handle but conquer this life you’ve been given. This life is going to be good and bad and everything in between and you’re going to make it through.

I just wanted to tell you that.

Reflections on Being Diagnosed with a Chronic Illness as a Child

By Leah Clark

When I was twelve years old, I was diagnosed with Crohn’s disease. From personal experience, I believe that being diagnosed at a young age can be seen as a blessing and a curse. Of course I am partially biased; I don’t want to go through my life wishing that I had been diagnosed at a later age. There is literally nothing that can be done to change that. With that, let’s start with the bad news about being young and diagnosed with a chronic illness. At the time, I didn’t fully understand what what was going on half the time. I remember feeling healthy, and then all of a sudden, I was feeling awful all the time. I would could home from school exhausted; I barely ate anything because everything made my stomach hurt. It wasn’t like a normal cold with the sniffles and running nose. That I could recognize, but these new painful experiences were different, and I didn’t know what was going on until I finally went to the doctor.

Reflecting now, I realize what else was going on, apart from getting Crohn’s disease. Part of my childhood was taken away from me, and that’s a pretty big statement. A part of my childhood was not lived because I was too sick to live it. While other kids my age were able to go to pizza parties and stay up late at sleepovers, I literally was too exhausted to keep up. Along with Crohn’s, I was also diagnosed with Celiac disease, so I can’t eat gluten anymore. Not only was I that sick pale girl with bathroom problems, I also couldn’t eat half of the diet a normal child eats. No chicken nuggets and pizza rolls. I had to bring my own snacks when it was someone’s birthday at school. This was also a time before the gluten free diet fads exploded the industry, so there were not many options for me that didn’t include basic foods. You never realize how integral food is in American culture until you can’t eat it anymore.

“A part of my childhood was not lived because I was too sick to live it.”

Aside from missing out on those experiences, I also missed out on social and developmental aspects. For example, in my middle school, there were a lot of tall, athletic girls and boys that participated in volleyball, basketball, tennis, track, cross country, so on and so on throughout the year. Sure, middle school sports aren’t really that much in terms of importance, but at that age, sports signified a time to spend two hours with your friends outside of the classroom. I wanted to be part of that. I didn’t want to miss out on what my friends talked about, who they were talking to, all the hot gossip. You know, typical middle school things. However, I was not good at sports, like, at all. While all my other friends were growing up, getting taller and having fun actually being good at sports, I was not. I was malnourished for so long that I skipped that part of purperty. In fact, I’m still the same height that I was in 8th grade, 5’2. Maybe this is why I don’t like participating in sports even to this day. I feel like I don’t “fit in” in the activity, and I sometimes still get angry that I can’t be better at them.

Anyways, the point I’m trying to make is not that I was bad at sports when I was younger, or that I couldn’t eat birthday cake with everyone. The point I’m trying to make is that I was deprived of childhood experiences that I would consider vital in growing up. Some days, I wish that I had a different childhood; I wish I wasn’t diagnosed when I was so young. It brought not only sadness into my life, but a lot of anger, for a long time. I was forced to grow up faster than my classmates. Heck, I understood how healthcare worked at the age of 14. But, it’s frustrating to be a child and not understand why bad things are happening to you for no reason. For awhile, I felt like I was being punished for something. Why do bad things happen to a good people? Am I a bad person? It took so long for me to realize that sometimes, life sucks, and sometimes good people get sick.

The picture on the left is my 6th grade school photo. My face was thin. I hated smiling. I felt like a ghost being trapped in a body I didn’t recognize. The picture on the right was taken this summer, almost ten years after the other. It’s safe to say I don’t feel that way anymore.

That being said, being diagnosed at a young age was also a blessing in disguise because I was an impressionable pre-teen and able to adapt to my new lifestyle of having a chronic illness in the same way I adapted to other major changes in my life (puperty, middle school, etc). I thought of it as, “Well, I guess this is a thing now,” and I just accepted it as my new life. It wasn’t until later when I would look back on my life that I realized I had experienced some pretty tough things. Of course, I didn’t love it at the time. Who would love having to explain to all your classmates why your face looks like an inflated balloon from prednisone? Or why you have to skip school to go to the doctor’s office for infusions every few weeks? I was lucky enough to go into remission fairly quickly after diagnosis, and (most) classmates did not even discuss my disease with me because it wasn’t affecting my day to day life. I have spent almost half of my entire life living with Crohn’s disease. I know tricks to help with flares. I’ve had years of experience in learning what foods affect my body. Yes, it has been a learning process, but as I grow older, I will be gaining more and more knowledge on how to handle my disease. I learn more about myself and what kind of person I want to be everyday. These experiences, though rough, have shaped me into the person I am today.

I was able to adapt to my new lifestyle of having a chronic illness in the same way I adapted to other changes in my life. I thought of it as, “Well, I guess this is a thing now,” and I accepted it as my new life.

The one thing about being diagnosed at a young age that outshines all the rest is the fact that I have met so many wonderful people with the same disease as me. I was diagnosed in the summer of 2009, and that same summer was the year my parents sent me to a summer camp for kids with inflammatory bowel diseases. I was a camper there every year from then on for six years and was fortunate enough to be a counselor for four years after. It was such a joy to meet kids my age that knew exactly what I was dealing with. We were able to share stories, give eachother advice on how to handle our illnesses, and just spend a week being a “normal” camper. I am happy to have been diagnosed at a young age, because I was able to meet other kids that were diagnosed at a young age, too. It’s a special bond. I have made lasting friendships with mnay people, and it has been an amazing journey. I understand not everyone diagnosed at a young age was able to meet people their age with their illness. IBD can be a very isolating disease, but the thing I find to be one of the best things about my illness is the community established from it. A good support system can honestly be the difference in someone’s life that changes how they look at their disease. I know for me, just the fact of knowing there were other kids like me, helped me so much with my when I was younger.

If I could give just one piece of advice to someone with IBD, it would be to establish a support system. If you haven’t met anyone that has IBD, I encourage you to seek them out. Whether that be a club on your college campus, a support group in your town, or even online, meeting other people will similiar experiences with you can be se rewarding. I was fortunate enough to establish these relationships at such a young age, and for that, I am grateful to have been diagnosed with my chronic illness as a child.

New Year's Resolutions from a Fellow Crohnie

By Erin Ard

Living a life with inflammatory bowel disease is in one word, unpredictable. For Crohn's disease, you pretty much do what you can to control the inflammation in your body by controlling your food intake and working with your gastroenterologist on what treatment methods to use. Not to mention, dealing with any other additional complications or side effects. I was diagnosed with Crohn's disease 10 years ago now and I've learned a lot about strength, resiliency, and the imperfection of the human body. Since my diagnosis, I've learned a lot about my body and my disease including how to accept all of its flaws. But because reality tells me I will deal with this disease for the rest of my life, my journey with Crohn’s is not over yet so there is still so much more to learn.

My journey with Crohn's started back in high school and honestly, I had no idea what would be in store for me. When I was finally sent to see a specialist, we would drive over an hour to my gastroenterology appointments. I started out taking mercaptopurine to suppress my immune system but quickly advanced to Remicade as a long-term treatment. On Remicade, I finally felt like myself again – at least a version of myself with additional manifestations of my Crohn's. The joint pain and short-lived fevers still persist, even today. It has been 8 years since I started on Remicade and a lot has happened over those years. I finished high school, moved away from home, and started college at the University of Wisconsin - Madison. Since starting college I've learned a lot more about myself as an individual and how Crohn's affects my life as a whole. In fact, it has changed since I was diagnosed and achieved remission the first time around.

I moved through the years mostly symptom-free. With only the rare stomach ache, but still able to maintain your daily routines. I knew precisely how my daily life would change if my disease was active. I valued the time I had thinking I could eat what I wanted without repercussion or go on a long run without my joint pain forcing me to limp the remaining distance. When your Crohn's is in remission, you have the freedom to eat delicious - maybe not so Crohn's-compliant - foods. You may even plan travel trips into your year with minimized anxiety of having an episode. I had the freedom to do all of these things! Since 2019 started, I tackled my vision board ideas by cooking more from scratch, trying out healthy recipes in my Insta Pot, and booking my first flight on a plane! Followed by several more flights to exciting new locations I hadn’t dreamed of experiencing because of the travel-anxiety instilled by my Crohn’s. For a woman in her early 20s with Crohn’s disease, I was crushing it! Then a few reality checks later, the unpredictability of IBD set in and I learned an important lesson. That no matter how far into remission you've gotten, odds are you might flare-up again in the future.

Photo by Evie Shaffer from Pexels

This sad truth is where I found myself recently. For the last few months, I've felt pretty off. I was getting more frequent belly pains, indigestion, irregular bowel movements, and my joints were starting to bother me more. I had originally attributed all of my symptoms to not eating well, which was a naïve thing to believe.. In retrospect, I had been struggling to stay in remission for the past couple of years. With the way that Remicade infusions worked over my 8 week time period, I would started getting symptoms again around week 7. That last week was a familiar struggle which included neglecting some of my responsibilities at school. I would end up skipping a class here or calling into work there - each pretty understandable given the circumstances but I still regretted having to do. About a year ago I went in for another colonoscopy (my third so far) because of these recurring symptoms and because my last one was towards the beginning of my diagnosis. The results didn't come back perfect, of course. They found some inflammation in my distal colon and the opening to my small intestine, which would explain my irregularity, stomach pain, and indigestion. I was told my gastroenterologist would be in touch to discuss what my next steps would be. After that visit, everything concerning my disease went on hold for awhile. In other words, life happened. My obligations for school and work started to take over my free time. Being the Crohnie I am, my limited will power from the fatigue would have me put the small tasks off until the following day. Meaning my health was put on a back-burner because they would always be put off until the “next day.” I was still receiving infusions every 8 weeks and conquering through my days, so I didn’t jeopardize my self-efficacy. I felt able to accomplish whatever I set my mind on. Eventually I started to wonder what my prognosis would turn into if I continued living this way. So I finally scheduled that appointment, this time with the gastroenterologist that performed my last colonoscopy.

Since I've started this fellowship with #CCYAN - the Crohn's and Colitis Young Adults Network, I've read so much about other people's experience and learned the expansive symptomology of inflammatory bowel disease in other bodies. Since the start of the year I realized how crucial it is to maintain your disease to prevent complications or necessary surgery in the future. Heading into the new year, my new outlook will be focused on achieving remission and maintaining a healthy body, any way I can. Let me share with you what my Crohn’s-related New Year’s resolutions are for 2020..

Learn to accept the unpredictable.

The first resolution I’d like to explore more is in how I think. Because Crohn’s can be so unpredictable, accepting this as a fact of the disease may help uncontrollable events feel less traumatizing. When you can learn to seek solutions or simply see the positive rather drowning in the self pity, loathing, disgust or whatever you might feel, you will feel a bit more at ease. It takes so much energy worrying about what "could" happen in the future. Like what "might" happen if you venture away from the privacy of your home and go to the movies today. Or "if" you might have the urge to go on an airplane while the bathroom is busy. Or "if" you don't make it to the toilet on time. Events like these are bound to happen and throw you for a loop if you aren't prepared. I should clarify that learning to how to accept and not worry about the future doesn't necessarily mean you shouldn't prepare for anything and everything. Because the first thing we all learn with IBD is that preparation is key to surviving any traumatic bathroom incident!

To take initiative when it comes to my well-being and body's health.

The second resolution involves how take action when Crohn’s is clearly affecting my body. My bad habits of binge-eating sugary treats or ordering high-fat take-out when I’m not feeling well starts to become routine when I don’t take responsibility for some of the fall out. I’d like to learn how to better take initiative to prevent consequences or make the most of my recovery. This means staying in close contact with my gastroenterologist about any trouble I’m having, not eating foods I know will quarantine me in the bathroom the next day, and keeping track of my symptoms, as tedious as that might be.

Recently I received not-so-great news from my gastroenterologist and it felt like my world was collapsing. After I took a calprotectin test which showed an adequate amount of inflammation, she told me that my Crohn's was flaring up again. It took me a bit to realize that what I was experiencing was actually long-lived. I had started getting symptoms months prior and it took me too long to get back on track. Something simple that could have helped me notice something sooner would have been a food log, which unfortunately, I don't have a lot of experience in carrying out. However, I do see their value and hope that this next year I can explore this path and hone in on what my exact food triggers are and how my body changes throughout the year. If you are now interested in doing the same, see this article on How to Use a Food Diary to Help Manage Crohn’s Symptoms and Flares from Everyday Health. I might not go as far as weighing my food, but at least I will get an idea of what food leads to which symptom.

My disease will change as much as I do.

This is one thing I needed to accept my disease started to flare up again. I was caught up in the idea that I had achieved remission and that everything would stay relatively constant. I just couldn’t see myself going through what I had in high school again, when my Crohn’s had surfaced. Since then it’s been a constant flow and I tried to push any thought that the disease would hold me back aside - which was an advantage for the time-being. However, this also kept me from growing because I just shut everything out. I wasn’t able to harness the power of vulnerability in having an illness to accept myself as I am and love my body.

After spending the last 8+ years in remission, with only some minor episodes, finding out my disease was flaring up again came as a shock to me. I've noticed that I'm the type of person who is apprehensive around big life changes. I like how things are going, I am comfortable with how everything is, and if I have to suffer through it a little, I am fine with that. However, this kind of mindset wouldn't suffice anymore and I've been realizing that more and more every day. My doctor and I have been working hard to put my disease back into remission. I'm trying some new medication out and taking everything new in day by day. IBD is so specific to every person, so how it presents itself or progresses is going to look different in all of us. And as all of us grow into young adults and beyond, our disease will change over time as well. For the better, or not so much.

My body will do some weird things, just learn to go with it.

You would think having to deal with gut pain would be enough, but there are so many other things that can factor in! The most common list of symptoms for Crohn's disease include abdominal pain, diarrhea, and fatigue. But the lesser known, indirectly related symptoms should also include weird noises, smells, urgency and accidents. Your gut will make loud gas-y noises while it’s quiet in the office. You will have to take frequent, unexpected breaks when the urgency gets the better of you. And the unfortunate reality is that sometimes, you won't make it to the bathroom in time.

The most healing part of my being more vulnerable this past year, was accepting these symptoms as they were instead of trying to control them. Because when I’d try to control them, I would get gut upset, constipation, or even more uncomfortable. I eventually started to tell people that yes, I have had accidents in the past and brushed this confession off like it was normal. Humor always goes a long way in these situations. Because of the healing I’ve already had, I want to pursue this resolution in 2020 as well to see my body’s flaws in a new light.

My hope is that you will find some inspiration to create your own list of resolutions for yourself. Whether they are similar to mine or completely different! Join me in making a resolution list for yourself this year and we can both actively improve our life with IBD together!