10 Things to Know If You're Recently Diagnosed with IBD

Newly diagnosed with IBD? I wish you knew these first.   

Growing up as a teenager, I was a perfectly healthy child. I ate regularly; I was active and a bright kid who never had any particular routine or lifestyle that I used to follow. But everything started turning upside down once I started seeing symptoms. An bigger tragedy was when I almost felt like the game had ended after being diagnosed. No! Not at all. The actual game starts only after the diagnosis. Our bodies are always changing with IBD. From one day to the next, we don’t know how we are going to feel or what is going to happen. So it is of the upmost importance to know yourself and your body first. Ignorance certainly isn’t bliss here. If you feel like IBD is ruling your life, it’s time to take back the control. Here are the 10 things which I would like to share with all those who are newly diagnosed with IBD:

1. Educate yourself: Knowledge is power. Understanding IBD leaves you better equipped and empowered to manage it. There are many patients out there without enough knowledge about their IBD. It’s our responsibility to know everything we can about our disease and also our bodies. Take the time to learn everything you can. Read and discuss as much as possible with your doctors. 

2. Track your symptoms and triggers: Learn about your own symptoms and triggers. Many doctors suggest maintaining a food diary so that your doctor may be able to use the data you gathered to help guide your treatment plan. We can understand our daily life and limit what happens to us by doing this. 

3. Never miss your regular follow ups: After reaching my first remission, I assumed I was completely cured and had stopped my regular check-ups and follow ups with my doctor. The penalty for being so ignorant came with a cost of having the next severe flare up within the next few months which completely drained me and pulled me back to square one. IBD is a disease which needs to be managed and if you feel symptom free, you are not cured, it’s just that your medicines are working and controlling your symptoms. So it is important to have regular consultations with your doctor and monitor the functioning of your systems. 

4. Make every appointment count: Be well prepared as to what you need to discuss with your doctor before hand as most of the appointments will be limited to 10-15 minutes and you tend to lose out on discussing important stuff. You can even jot down pointers on paper before entering the doctor's cabin. 

5. Don't be afraid to ask for more information: The time slot allotted for each appointment may be limited. That doesn't mean you need to limit your queries and clarifications. Make the best of that limited time. For instance, if you’re being treated with steroids, ask for detailed information about how this medication could influence how you feel, the side effects, mood swings, weight gain, and such.

6. Know your treatment: First, know what kind of treatment the doctor has put you on. Whether it is the traditional treatment or biologics or allopathy or any other alternative therapies. Understanding your treatment can help you know what is happening to your body and analyse your recovery rate to attain symptom free life by choosing the best that suits your body as what suits others may not you and vice versa.  

7. Emotional health is equally important as your physical health: There could be days when your entire body hurts and there is nothing you can do. There could even be days when you don’t even want to move because you are so exhausted. During those days it’s not easy to control your emotions as you tend to feel more low and helpless. But you can still fight back by choosing to feel “it's OK”. Don’t let your IBD control you.

8. Coping with Stress: Stress doesn’t cause IBD, but it can sometimes make symptoms worse. Stress relief is crucial if stress provokes your flare-ups. Learning how to cope with stress and anxiety isn’t always easy. But it’s really important for us to keep stress under control. Yoga, meditation and music could be a few tools that may be helpful in this. 

9. Reach out for help when needed: IBD can be an embarrassing disease. It’s normal to feel alone sometimes. At a young age, we are taught not to discuss what happens behind a bathroom door. This can leave those of us with IBD, feeling extremely isolated and even hopeless. This can impact our self-esteem and quality of life. It's utmost important to have some go to people who understand these challenges and support us in every step of our journey. 

10. Nutrition matters: Understand how your system works and choose what goes into it rightly. When the intestine is under attack, it has a hard time absorbing nutrients. Therefore it's important for us to be aware of what we eat. Follow a low residue diet to relieve abdominal pain and diarrhea. If you have strictures, it is especially important to avoid nuts, seeds, beans and kernels. 

These are few of the things which I feel we need to keep in mind and plan our lifestyle when newly diagnosed. Knowing these pointers at the initial stages makes our lives much easier.  

Ostomates and Intimate Relationships

Imagine you are in a relationship with a person and you want to take that relationship to the next  level by taking the step towards being physically intimate. You take off your shirt and you hear a  gasp. “What is that?” You look at your partner’s face and follow their gaze to your  torso and you realize something at that moment: you had never told your partner what it means to be an ostomate. Ostomates live with a part of an organ exposed outside of their body but  usually secured in an ostomy bag for the rest of their life. Although at first it is difficult to adapt to  this visible change, ostomates soon became comfortable and adapted to their routine well.  However, this new life for ostomates brings some changes to their personal life, especially to their  physical relationship with their partner. Both ostomates and their partners should take steps to understand about ostomy life and give each other the benefit of doubt to further improve their  relationship in a more intimate sense. 

An ostomate should prepare themself physically and mentally to discuss their condition with their  partner. This is important and necessary because post-surgery will bring a major change to their  body. Along with it, an ostomate may feel anxiety, fear and concern about their body. Ostomates have to express their fear and worry to their partners to alleviate their distress of this new  situation. An ostomate should understand that they can never ignore and hide their stoma from their partner forever. They should initiate small talks with their partner especially when they are ready  to engage in physical intimacy after surgery. They can talk about what happened with the surgery,  how the post-surgery life looks like, what is a stoma and how it looks like, ostomy pouch and what  it does and how they change it and so on. These small conversations will directly educate their  partner about what kind of changes an ostomate is going through and give them insights into what  being an ostomy means to their relationship. An ostomate can take the following steps in order to  engage in sexual life with their partner. 

• Take time and slowly expose the pouch and stoma to your partner. Your partner may show  reactions such as shocked, scared, or even curious. Or they may not show any reactions  as they are not sure on how to react to a stoma. They may not be sure on how to react  also. Don’t get angry or disappointed with their reaction or lack of reaction in some cases.  Most of the time, a partner will worry that they may hurt the stoma and dislodge the equipment during intercourse. Be patient and tell them how it does not affect your sexual life and how they can help you so it does not hurt during intercourse. Give your partner  more time to ensure they feel safe, secure and comfortable to be together with you. 

• Take care of your pouch. The type of pouch plays a role in ostomate sexual life. It  will be good if you wear a non-transparent pouch. Non-transparent pouch prevents your  partner from seeing the exposed stoma and the contents of your pouch. The reason is,  they might be scared to engage in sex when they see your stoma. So try a non-transparent pouch or alternatively you can buy or design your own “pouch covers”. Pouch covers can  become a fashion statement and it can make you feel good too. Additionally, ensure your pouch is empty before engaging in intercourse. This is crucial to ensure there is no leakage  or unpleasant smell during intercourse. You have to keep everything clean and neat  beforehand to make it comfortable for both yourself and your partner.

• Monitor your diet before engaging in sexual activities. See which food helps you and which  does not. A good diet can lead to an improved sexual relationship between you and your  partner. Avoid foods that create gas and odor especially beans, broccoli, corn, cabbage,  and peas. Experiment about which food causes bad reactions and gas to you and avoid  them or at least eat them sparingly. This will prevent your stoma pouch filling with gas. To  keep it safe, try to use a gas filter pouch as this will keep your pouch flat and deodorize the gas. 

An ostmate’s partner can also take several steps to ensure their relationship with their ostomate  partner is healthy and good. As ostomates, they might go through a difficult time adjusting and even fear rejection. So, as a partner, be patient and give them time. As an ostomate’s partner, you can follow  the following steps to have a better intimate relationship with them. 

• Don’t jump into a sexual relationship right after their surgery. You should remember that  ostomy is considered major surgery and your ostomate partner needs time to adjust to  their new normal. The surgery does not only put stoma outside but there is a high  possibility of bowel and fistula track removal for those who have Inflammatory Bowel  Disease (IBD). Your partner definitely need considerable amount of time to heal and gain  back strength following their surgery. 

• Be mindful of your reactions and try not to create any distance with them. Your ostomate  partner may feel rejected and feel lonely. Communication is the key solution in any issue.  If your partner does not initiate their post-surgery life, try to initiate that conversation  yourself. For instance, discuss with your partner about physical intimacy and experiment  with different positions so that they may not feel uncomfortable. Keep in mind that most stoma patients will not engage in intercourse for weeks or months after surgery. 

• Seek professional advice from sex consultants, Enterostomal Therapy (ET) nurses, or IBD  advocates to educate yourself about your partner's sexual issues. Generally,  professionals will provide solutions to improve on both you and your partners’ emotions  and also how to manage your sexual life. Professionals may not solve the core problem  for you but they will be able to provide suggestions, or solutions from their research and  work with other patients. They can also talk about your concerns, make you understand  your feelings better and give meaningful and constructive advice for you. 

Being intimate is highly possible for an ostomate and their partner if both take time with their new  situation and be supportive of each other.  Be positive and engage in activities that make you happy and healthy. When you find a new  partner, talk to them about your ostomate life and be open to answer questions honestly.  Communicating with each other about your needs, wants, concerns and fears can go a long way  in ensuring a healthy and meaningful life together.

IBD, Mental Health, and Diet

Have you ever had a gut feeling before? Maybe you’ve had butterflies in your stomach when taking a risk, or felt something in the pit of your stomach when receiving bad news. Are these just idioms, or is there something else there? On my journey to become a registered dietitian, the connection between food and physical health is a common theme. Something we talk about much less is the connection between food and mental health. While Inflammatory Bowel Disease (IBD) is often thought of as a physical disease, the mental impact cannot be ignored. In my opinion, we don’t talk enough about the IBD and mental health connection, and we certainly don’t talk enough about how food can play a role in this aspect of our disease.

Mental Health and Gut Health

What does gut health have to do with mental health? Strap on your helmet, it's time for a crash course in the connection between gut health and the brain. The gut has over 500 million nerves, which serve as a two way communication system with the brain. If your gut isn’t happy, you better believe it is going to let its good friend the brain know about it. Our guts are also responsible for producing neurotransmitters, which help to regulate physical and mental functions of the body. One important neurotransmitter that regulates mood, serotonin, is produced 95% in the intestines! Another one, GABA, can be produced by the friendly bacteria in the gut, and can help reduce feelings of anxiety, depression, and fear.

Mental Health and IBD

As you can see, the gut and the brain are basically best buds. But what does that mean for people whose guts are broken more frequently than the McDonalds ice cream machine? Unfortunately, IBD patients are at an increased risk for developing anxiety and depression, and frankly, can you blame us? We are forced to bear the burden of a lifelong chronic disease, often being diagnosed during some of the most mentally vulnerable stages of our lives. High school is hard enough without explaining why you spend half of every class in the bathroom. It might seem like the connection between intestinal health and brain health is bad news, but there is a silver lining. If we can change the health of our gut, we can change the health of our brain.

Diet and Mental Health in Healthy Individuals

In healthy individuals, certain diets have been shown to increase feelings of wellbeing, reduce feelings of depression, and improve psychological health. Both individual foods such as fruits and vegetables, as well as dietary patterns such as the mediterranean diet, have been linked to these benefits. Some foods are also associated with worse mental health. Sugar has been linked with mood disorders and depression. Excess sugar consumption is also associated with dysbiosis, a shift in the composition of the gut bacteria from helpful to harmful species.

Diet and Mental Health in IBD

In a study presented at Digestive Disease Week 2020, researchers categorized IBD patients into two groups, a high sugar group (>100 grams per day) and a low sugar group (<100 grams per day). They found that those in the high sugar group had increased feelings of fatigue, trouble with social engagement, feelings of depression, and trouble relaxing compared to IBD patients in the low sugar group.

It is important to note that sugar containing whole foods such as fruit have been strongly linked to positive health outcomes, and should be considered differently than sugars from processed foods. Added sugars from processed foods such as soda or candy are associated with an unhealthy gut, and worse overall health.

I think this is such an important study, not only because it has practical implications for IBD patients, but also because it opens doors for patients to take control of their own mental health. I don’t think I've ever had a conversation with any GI doctor about mental health, despite the increased risk we carry with IBD. Until that changes, it is reassuring to know that we have the option to eat in a way that is associated with good gut health, and therefore good mental health.

References

Choi K, Chun J, Han K, et al. Risk of Anxiety and Depression in Patients with Inflammatory Bowel Disease: A Nationwide, Population-Based Study. J Clin Med. 2019;8(5):654. Published 2019 May 10. doi:10.3390/jcm8050654

Knüppel, A., Shipley, M.J., Llewellyn, C.H. et al. Sugar intake from sweet food and beverages, common mental disorder and depression: prospective findings from the Whitehall II study. Sci Rep 7, 6287 (2017). https://doi.org/10.1038/s41598-017-05649-7

Stranges S, Samaraweera PC, Taggart F, Kandala NB, Stewart-Brown S. Major health-related behaviours and mental well-being in the general population: the Health Survey for England. BMJ Open. 2014;4(9):e005878. Published 2014 Sep 19. doi:10.1136/bmjopen-2014-005878

Parletta N, Zarnowiecki D, Cho J, et al. A Mediterranean-style dietary intervention supplemented with fish oil improves diet quality and mental health in people with depression: A randomized controlled trial (HELFIMED). Nutr Neurosci. 2019;22(7):474-487. doi:10.1080/1028415X.2017.1411320

Brown K, DeCoffe D, Molcan E, Gibson DL. Diet-induced dysbiosis of the intestinal microbiota and the effects on immunity and disease [published correction appears in Nutrients. 2012 Oct;4(11)1552-3]. Nutrients. 2012;4(8):1095-1119. doi:10.3390/nu4081095

What I Wish My Newly-Diagnosed Self Knew

Sitting in the patient chair, hearing your doctor say “you have Inflammatory Bowel Disease” can be terrifying and change your life in a matter of seconds. These words come with both a massive feeling of relief and validation, knowing that your symptoms are not just in your head and that you will finally receive the help you deserve. But, along with this relief, comes terrifying thoughts, too many google searches, and the realization that you will have this diagnosis for the rest of your life. Feelings such as anxiety, fear, and loneliness follow with no sense of direction. When looking back at my newly diagnosed self, I wish I could hug her and tell her everything I know now.

It‘s not your fault 

The guilt that comes with a new diagnosis is unexplainable. My mind wandered, time and time again, over what I might have done to cause my diagnosis. Was it loving toaster strudels as a kid and eating a few too many? Was I too stressed at my internship? Was it previous medications that disrupted the microbiome in my gut? The truth is, you can let your mind wander for as long as it wants, but you are NOT the reason behind your illness and you are NOT at fault. Many people, including myself, strongly believe and are determined that everything has a purpose and that everything happens for a reason. Although some may argue this belief, obsessing over what may have caused your diagnosis and blaming yourself will do nothing but harm. Inflammatory bowel disease is not the result of a bad decision or bad karma, and something that is most important to understand is that you are not to blame. Once you come to peace with your diagnosis and become confident in the unknown, you will begin to heal in ways you never have before. 

The importance of your healthcare team 

As a young adult diagnosed with Crohn’s disease, I was scared, lonely and afraid. After years of fighting for a doctor to take me seriously, I felt unworthy of receiving proper treatment and advocating for myself to my healthcare team. With help from a handful of individuals, I slowly realized that I should be looked after by healthcare professionals that listen, support, and are trustworthy. Not only does this apply to gastroenterologists, but also to other medical professionals that make up your healthcare team. If your gastroenterologist does not support you and undermines your symptoms, shop around for a new gastroenterologist that makes you feel comfortable, heard and safe. Additionally, a gastroenterologist is not the only medical professional that should be on your team. If you are able, reach out to a dietician, nutritionist, or naturopath certified in food nutrition to receive guidance on diet, food choices, vitamins, and supplements to support your health. Lastly, do not be afraid to seek out help for your mental health. The stress that comes with a new diagnosis can be extremely heavy, and for some, stress can aggravate GI symptoms and flares. The best decision I made was seeing a therapist to help me through my past traumas and transition into entering society post-diagnosis while dealing with debilitating symptoms. A wide range of healthcare professionals will allow you to thrive and succeed in ways you didn't even know were possible. Here in Canada, dieticians, nutritionists, naturopaths, and therapists are not covered by OHIP. If you do have insurance, these types of professionals are usually covered. If you are not able to cover the costs for these additional healthcare professionals, reach out to your GI to see if there are any subsidized or low-cost options available to you. Also, many universities and colleges offer free or low-cost therapists and nutrition counselling. 

Find your support group 

An Inflammatory Bowel Disease diagnosis is scary and may leave you feeling as if you need to be independent through this journey as you don’t want to burden others. Putting up a wall and pretending like you are fine is something I did more times than I should have after my diagnosis. I had such a hard time being vulnerable and admitting I was not ok. With that being said, the best thing I could have done was confide in a few trusted friends and family members. Opening up to my loved ones allowed me to feel more comfortable asking for help when it was needed and having a safe space to vent. Opening up to my support system allowed me to express my fears and challenges, gave me the opportunity to have someone join me at healthcare appointments and to also receive help when I was flaring. 

If you are located in Canada, Crohn’s and Colitis Canada not only offers regional support groups where you can meet fellow peers with IBD, but they also offer a mentorship program where you have the opportunity to be mentored by someone who is experienced in navigating the hardships of IBD. Additionally, reach out to your schools accessibility centre to find out if there are any IBD groups with individuals around your age to network with. Lastly, joining Facebook or Instagram pages that connect others with IBD is a great way to speak to people who understand what you are going through.

Grief    

As a newly diagnosed young adult, the negative feelings and thoughts of living with a chronic disease for the rest of your life can be endless. Dealing with healthcare appointments and debilitating symptoms that not many other young adults experience can leave you feeling defeated and hopeless. Something important that I have learned throughout my journey is that it’s important to sit in those feelings and take the time you need to process them. Take time to grieve your old life and the life you pictured for yourself, but also remember everything positive that this diagnosis will give you. You will be stronger, resilient, and more empathetic to those around you. You will view the world in such a way that you never have before, and you will become more intuitive with your body and mind through this journey. If your feelings of grief become overwhelming, reach out to a trusted friend, family member or a mental health professional. Although my diagnosis has been challenging to say the least, I promise you there are things my diagnosis has given me that I am beyond grateful for and I wish I was reassured of when I was newly diagnosed. 

To the newly diagnosed IBD warriors, you are amazing, resilient and strong. An unpredictable and serious diagnosis such as IBD will be challenging and difficult, but you are not alone and you never will be.

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.