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?

Celebrating Black History Month in the IBD Community

“Representation creates trust, so why aren’t there more people who look like me included in research and education?” This quote by Melodie Narain-Blackwell brilliantly describes the feelings that so many Black and brown IBD patients have. In recognition of Black History Month, what can we as a chronic illness community do to support our fellow Black IBD patients this month? Standing in solidarity with this marginalized community, helping amplify their voices, and acknowledging their experiences are ways to starting bridging those gaps. 

It is important to support BIPOC patients by recognizing the additional barriers that minorities, especially those in the Black community, face when navigating medical care and public health. Historically, Black people have been marginalized, abused, experimented on, and underrepresented in medical trials and research. Being seen as easily disposable, Black people have had to endure the systemic injustices of medical discrimination and medical racism. Crohn’s and ulcerative colitis are chronic diseases that statistically occur less frequently in African-Amercian populations. Statistics also show that Black people are more likely to not have their symptoms believed or validated, which has ushered a crisis of misdiagnoses. It is clear that implicit bias and antiquated medical beliefs are factors in the hesitation that Black people experience in the medical field. This phenomenon has led to an inherent distrust of medical institutions and treatment in the black community. As IBD patients we understand that having the right diagnosis and starting treatment is vital for healing and longevity. This concern is magnified in the Black community due to the systemic injustices previously mentioned.

 When I first started to become ill in 2019, I did have some internal generational trauma that made me hesitant when seeking medical care. After months and months of pain I finally decided to go to the hospital to get some answers. When speaking to the doctor about symptoms, I vividly remember feeling an overwhelming sense of unease rattle through my bones. What happens if my experiences and symptoms aren't taken seriously? How can I truly convey the severity of how I feel? Although I did not receive a proper diagnosis from the hospital, I was lucky enough to have the staff members at the hospital believe and validate me. I was privileged that this was not an overtly terrible experience, but it does not take away from any reservations I had, as well as the reservations that countless other Black people have. 

We must acknowledge and hold space for Black people within the IBD community through advocacy. Having a diverse range of anecdotes and stories will only propel this community to further embrace the lived experiences of so many Black and brown people who are voiceless. Education and conscious activism will only lead to more positive intersectional change. 

In recognition and celebration of Black History Month, here are a few black pioneers in the IBD community as well as Gastroenterology:

Sadye Beatryce Curry was the first female African-American gastroenterologist in the United States. On top of her endless list of accomplishments, she was a founding member of the Leonidas Berry Society for Digestive Disease as well as the first woman to be elected chair for the Internal Medicine Section of the National Medical Association.

Leonidas Berry was the first African-American gastroenterologist in the United States as well as a pioneer for the advancement of endoscopy procedures. Dr. Berry also invented the gastroscopy scope. Leonidas Berry has a passion for bridging the gap of racial problems in public health. 

Gary Richter is a gastroenterologist and currently runs Consultative Gastroenterology in Atlanta, and has become the first African-American president of the Medical Association of Atlanta. 

Melodie Narain-Blackwell is the founder of Color of Crohn’s and Chronic Illness (COCCI) which is a nonprofit focused on increasing quality of life for minorities who battle IBD and related chronic illnesses.

Pandemic, Lockdown, Isolation and Chronic Illness

It has been almost a year now and we are still in the middle of a pandemic waiting for our lives to return to normal. However, reality may never be the same again. 

So much has changed, but it seems like nothing and it makes it difficult to feel the comfort of real security.

My return - and the return of many other patients with chronic conditions- to normality may be further away than most of you. But I know that all this is equally difficult for all of us. 

They say that only the elderly and people with underlying diseases are at risk. The vulnerable population. 

But what happens when you are the vulnerable? 

I belong to those who they call vulnerable. I never hid my illness nor was I afraid of the stigma. 

I look young and healthy, but I’m not! 

I’m immunosuppressed, which makes me vulnerable to any kind of infection. 

We have been in lockdown for months. This is certainly not easy, nor is isolation.

I understand that it is difficult to change your daily life, but do you know how many times we, the vulnerable, have changed our daily lives not because we wanted to, but because our health imposed it?

How many times have we canceled a plan at the last minute, favorite foods we stopped eating, parties we missed and much more?

For those of us who are vulnerable, it is not so foreign to stay home, since we have spent long stays in our home and before COVID-19. 

I am in quarantine for a long time. It is not easy, it dissolves your mood, your body. Staying home is unbearable for everyone. 

Isolation, despair. 

And it is now that we are all looking for ways to balance our security with our contact with the world. 

All of this is not so foreign to me. I have some chronic illnesses that require me every day to choose what to do and what not to do. Even before the pandemic, I was very careful, evaluating what was safe to do and what was not. 

I do not understand big differences in my own life now with quarantine; that I am not allowed to be touched, that I can not go to the hospital and maybe two or three more things.

And recently I made a finding that has a lot in common with today's reality. 

I realized that my illnesses will never leave me, while a cure seems like a distant dream for now. 

Yes, I can take steps to improve every day, but what I thought as “normal” in previous years may never come again. For many years I waited for the cure to continue my life. Now that I accepted that I would carry my diseases with me, I gained freedom. My goal now is not to be cured, but to live better. 

So as I realized that it is not realistic to wait for the cure to live, so is the pause we have entered because of COVID-19 until our life is “normal” again. 

And this is the real challenge: how to move on and stop waiting to get back to normal.

Stay safe! 

Challenges as a Crohn's Warrior in Malaysia

In Malaysia, Crohn’s disease is also known as “Western Disease” or “Rich People Disease.” The reason behind this is mainly because Crohn’s is a rare disease in Asia,  particularly in Malaysia, as compared to Western countries. Many in Malaysia have never heard of this disease. Therefore, they are not aware of the Crohn’s and colitis patients’ struggles with their pain, medical procedures and psychological issues. 

At the beginning stage, I had no one to guide me. I had no idea on how to handle my newly diagnosed disease. With no medical background, no one in the family or friends with similar conditions, I struggled to cope with this disease and my normal life. Can you imagine the struggles I faced as a first year university student with my condition? I was  alone and I didn’t even understand what was going on and my normal was no longer a  normal. The internet was my only resource for information other than my doctor. By reading  everything I could find in the internet, I slowly started to understand this disease. Back then,  there wasn’t even a support group for Crohn’s in Malaysia as the disease is relatively unknown to Malaysians. In fact, I didn’t even known about any other Crohn’s patients until I  met one almost a year later after my diagnosis. My gastro doctors encouraged me and other patients to start a group so we could create a support system to each other. Now,  newly diagnosed Crohn’s patients or caregivers in Malaysia have access to few channels  that they could use to discuss, ask, guide and support each other going through this painful disease. 

Living with chronic disease, I had to adjust and adopt to new diet and lifestyle.  Changes in diet were mostly trial and error in the beginning. I had to monitor my  consumption and take note of any changes. Why did I have to monitor those changes? It is simply because I wanted to avoid flare ups that were caused by certain food that I consume.  For me, I found that my Crohn’s is mostly under control when I avoid foods that contain eggs. So I have to ensure my daily food consumption is egg free. If I didn’t, I’d have to visit toilet frequently the whole day. Precaution is needed for Crohn’s patients because flare ups can happen in any situations, therefore any heads up is a good one to have. 

Apart from my diet, I had made some massive changes to my daily activities too. Since I’m an Ostomate, I have to ensure that I don’t partake often in hardcore sports in order to avoid stoma prolapse. 

The understanding and acceptance of IBD in society is still a challenge for me. Most of them, as  I mentioned above, do not know about Crohn’s disease. I remember one of my friends asking me “Sara, is your disease infectious?”. At that time, I just laughed and say “No, it  doesn’t”. The lack of awareness, although understandable, is a huge disappointment when  someone I confided in is not taking any initiative to understand it.

Stress is another thing that I started to consciously manage. What is the connection  between Crohn’s and stress? Well, stress generally affects a person emotionally and mentally as it damages a person’s emotional equilibrium. But it also affects the person’s health. Even a person without chronic disease can feel their health being affected by high stress levels. So, anyone with chronic health issues, such as IBD patients, have higher  chances of having a relapse and flare when they are stressed. It is imperative that I  recognize my stress inducers, my stress level, my tolerance level and ways to reduce stress  so that I do not have chronic flare ups. Although it is impossible to live stress free all the time, I  believe that I should try to manage stressful situations to the best of my abilities.

Navigating relationship with Crohn’s is complicated and challenging. Crohn’s has created ups and downs in my relationships with my family, friends and loved ones. In the beginning it was really hard to explain to them my condition. They did not understand the condition or why and how I got this disease in the first place at all. It took a while for my  family to accept my condition and now they are slowly getting used to it. They are a great  support for me at the moment, and my heartfelt thanks. 

Dealing with Crohn’s is tough enough and unfortunately, Crohn’s is not something  that we can ignore or that it will disappear one day. Every single day is a challenge for me because I go through physical and psychological pain. I have to survive, improve my quality of life and live my life as normal as possible; I hope more people will become aware of  Crohn’s disease, of patients’ struggles, and accept their conditions. Be kind even if you don’t see someone’s struggle, their pain or their decreasing health.

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.

Advocating for the Specialized Care You Need: Reflections on Mount Sinai’s IBD Clinic

Recently, I’ve started receiving care from the Susan and Leonard Feinstein Inflammatory Bowel Disease Clinical Center at Mount Sinai. This was my first time visiting an IBD-specific clinic, ever. Prior to visiting Mount Sinai, I was lucky if there was a gastroenterologist or a colorectal specialist on call at my local hospital. 

On my most recent visit to the IBD Clinic for a post-operation appointment, I thought I’d reflect on what made this center so special, especially during the COVID-19 era. 

Post-surgery for an internal fistula -- feeling better already!

In light of the pandemic, the process for being admitted and seen (at any hospital!) has been streamlined into a tighter and safer protocol. With hand sanitizer stops at nearly every corner, I noticed that Mount Sinai took a heightened level of precaution than any other facility I had been in. Every doctor, nurse, and staff member had a face shield in addition to their masks, with some going as far as to don Bouffant caps.

Beyond the COVID-19 precautions, however, I would like to speak to the deeper and more important differences at this clinic -- the unspoken sense of solidarity between both patients and doctors alike. To have an entire facility devoted to this condition, a chronic illness shared by millions of Americans nationwide, means that there is a lack of cause to explain yourself. Everyone in the room is deeply familiar with the forms of IBD, along with all the embarrassing and critical details that few others are willing to talk about in their entirety. 

The waiting room at the Mount Sinai IBD Center is all socially distanced!

This plaque, hung on the entryway of the floorwide clinic, is perhaps one of my favorite parts of the IBD Center. It’s a reminder of how fortunate we are, as young adults with IBD, to be treated in a time where our condition has been identified and researched, nevertheless with a name and prognosis. It is a strange feeling, indeed, to know that the work and medical achievements of this doctor (and his name!) has forever changed my life. 

A plaque memorializing Dr. Burrill Crohn at the Mount Sinai IBD Center.

Of course, I would be remiss not to acknowledge how incredibly fortunate I am to live in the vicinity of this clinic. To have access to such a clinic with a focus on IBD in and of itself is a privilege, one that many Americans and patients are not so lucky to receive. I’m duly compelled, however, to point out how lacking our healthcare system is, especially for those suffering with chronic illnesses. As someone who was diagnosed with Crohn’s disease in the summer of 2020, a time when the SARS-CoV-2 virus revealed the greatest inequities and vast underpreparedness of American healthcare, I’ve come to meet, learn about, and further appreciate the frontline and essential workers, who are simply making the most of what they’ve got. 

Although it took me months to find the right team of doctors and healthcare professionals, I learned that it was alright, and at times, even necessary, for me to ask for more specialized degrees of care. An important lesson in my brief yet transformative journey with IBD: don’t be afraid to advocate for the specialized care that you need. 

Reflections: The Importance of Advocacy for IBD

It’s a little strange to title this article ‘Reflections,’ because IBD is unique in that it’s always ongoing, with nothing to really jump over and look back on to reflect; with the journey still very much running, our reflections are inbuilt into it.

 As I write this, I’ve been in remission from ulcerative colitis for more than a year. From the time I was accepted to be a CCYAN fellow to now, I have already been through a rollercoaster of new emotions: from immense gratitude and relief that I am finally a fellow of a network that I closely followed for several months to staggering self-doubt about whether I can truly do this opportunity justice. While poles apart, my feelings of gratitude and self-doubt and the largeness of the two do stem from the same root. After I was diagnosed with UC at the age of 19, I desperately needed to know more people who faced the same struggles. With little else to focus on in those starting years, hope would glimmer every time I found out about a famous personality or someone I knew who opened up about their chronic illnesses.

 The way an invisible chronic illness creeps up on young adults is very much like a thief breaking in your house when you’re asleep and stealing things that don’t seem so valuable at first sight but without which you can’t really survive (like all your dishes). As young adults, we are so entitled toward our bodies and organs functioning properly that there’s no way to prepare or even know you will be impacted and when you do, people have very strong opinions on what you could have done to avoid it. And if, like some organs, dishes weren’t replaceable and the upkeep of the damages was constant, the last thing anyone would want is to deal with the struggle alone and keep it private. At least that’s how I felt. As soon as I was diagnosed, I let everyone around me know mostly everything except for the “impolite” specifics. Sometimes if the gravity of my situation wasn’t acknowledged, I would push to reveal the impolite specifics too. Concurrent to my health challenges, I was still also learning aspects of a broad society I had entered just two years before I got UC. As I rushed to speak and be heard, I realized, through the fear of my family and the discomfort of peers and friends, just how closed this society is towards these things.

When there are no voices for something that drastically alters every aspect of your life, it feels as though you’ve been dropped off to a completely new city with no maps for guidance. Maps are important for not only getting you from point A to point B, but also giving you a sense of orientation to gauge where you are with respect to everything around you. No voices = no maps. By far, in India today, invisible illnesses not only lack visibility in patients' external bodies, but also in national and private datasets, policies, and advocacy. This leaves patients disorientated and vulnerable to quackery (health fraud), which results in the loss of crucial time, finances, and deterioration of mental health (with the ups and downs of new hope and disappointment).

If the silence around personal disturbances was anything to go by, then I did not do a very good job of fitting in to my society as I always took the opportunity to talk about what I was going through even when I realized with passing time that it wasn’t always welcome or understood completely. I thought I should speak up all the more, because if no one does, who will vouch for me? This casual monologue took greater form in my first experience of being at a public hospital in my city. By that time, I had scoured the internet for people like me, experiences like mine, unique symptoms like mine, etc. I had come to recognize some feelings that came as a by-product of my illness through Hank Green’s videos on YouTube, and that the illness was bigger than me and my doctors (who only focused on the strict textbook aspects of IBD). My mom and brother very supportively drove and accompanied me for my sigmoidoscopy and I even got to sit as I waited for my turn. Waiting for countless hours after the scheduled time of my appointment, I was busy drowning in my pond of self-pity. When I heard a young lady slightly older than me was invited to go before me, I was very irritated and urged my mom to leave and reschedule. My experienced mother knew better. As I waited, I could hear the conversation between the young patient and the doctors in the room next door. She was a daily wage worker and her grumbles about missing work, her stomach pain (due to which she tilted sideways when she walked) and the tedious hours she spent waiting for her turn followed her into the room. The doctors didn’t indulge her in any sympathy, but rather curtly started the process. I wondered out loud why they hadn’t offered her a sedative – whenever I was asked, I always thought what a preposterous thing to ask when the process was so intrusive and uncomfortable. It was because she was alone and needed to hear the doctor’s findings and, of course, had to head back home alone. Even in my miserable state, that struck something in me. Her yells and shouts during the process, and the surrounding patients’ aloofness painted a picture so bleak, I was forced to look beyond my situation and recognize that despair like mine was still placed high on privilege. Granted that sigmoidoscopies are not the most pleasant of processes to go through or even prepare for, her shouts seemed out of place. I gathered it was more of a release from the anxiety of being alone and in such a vulnerable position with no emotional support. It took me back to a brief, mostly one-sided exchange she and I had before she was called in. From the little I understood as she spoke rapidly in her dialect, she had absolutely no understanding of the formalities of the prep that had to be taken and, more worryingly, the seriousness of her illness. She had two kids she had to care for, and she came alone because her husband was a daily wage worker who could not miss work especially since she was missing work that day too. She complained to me about the high prices of prep, all the days she had missed getting tests done and scheduling and rescheduling appointments in a government hospital, her appetite loss due to nausea and how she couldn’t perform her labor-intensive work as efficiently. After she limped out of her session, I thought of the sheer population of people like her in India.

Ever since that episode, I started thinking beyond my illness and what I could do to help the numberless amount of people in the same boat as the young woman. To start helping, the first step is to get a clear picture of how many people are impacted by IBD, which is frustratingly not available nor acknowledged anywhere in India. I am grateful, therefore, that I found CCYAN as an international platform for advocacy. Advocacy would hopefully enable data collection somewhere down the line. However, sometimes the mountain looks too big to climb; at this moment, we are right at the bottom and there are many things to do. Sometimes I think of all the people suffering from IBD in India, and how many struggles go undiscovered due to health illiteracy, digital gaps, doctor unavailability, and expensive medication, etc. Now more than ever, as cases of autoimmune disease rise across the world, there needs to be a prominent force of advocacy for IBD in India, so that datasets can be recorded and informed policies can be formed. The innumerable people who struggle already for a living should not be further hindered in their struggle for support, information or resources in this regard.

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! 

AIBD 2020: Beyond Anti-TNF Therapy

My last session I was able to attend for AIBD 2020 focused on therapies for IBD that are beyond Anti-TNF medications. The specific sessions I attended were led by Anita Afzali, MD, MPH, FACG and Raymond Cross, MD, MS, AGAF, FACG. I wanted to attend this session because I have always found immunology fascinating and absolutely loved the classes I took on it. Kind of ironic that I was later diagnosed with IBD, right? Anyway, hearing discussions about newer biologic therapies and what is in the pipeline is encouraging as an IBD patient and a medical provider. I know many of you are on immunomodulator therapy or biologics, and there are risks and benefits to consider when starting and continuing these medications. 

First, let’s do a basic intro to one way that inflammation plays a role in IBD, specifically through TNF-alpha. I love this video from Animated IBD Patient if you are more of an auditory/visual learner. TNF-alpha is only one mediator of inflammation, and that’s why we are looking at other inflammatory targets, such as interleukins (IL-), JAK pathways, leukocyte (white blood cell) trafficking and preventing adhesion of these inflammatory molecules to name a few. (I also promise this will make more sense down below :) ). It’s pretty amazing that we know some pathways to target specifically to reduce inflammation, paving the way for medicines like Remicade (infliximab), Humira (adalimumab), Stelara (ustekinumab), Entyvio (vedolizumab), Xeljanz (Tofacitinib) and others. This decreases our reliance on medicines like prednisone, which lower inflammation in a broad way and typically have more unwanted side effects.

We have to consider the limitations of our current therapies when looking at new targets - 30-40% of us will fail to have an initial response to anti-TNF therapy and up to 50% of us may lose our positive response to biologics in the first year of therapy. There is also the cost, route of administration (like if you need to go to an infusion center) and treatment related adverse events (i.e. immunosuppression, allergic reactions, etc.) that are very important to consider when looking at our current therapies and targets for the future. We do know from recent studies that patients who have never been on anti-TNF therapies do better on medications that target other specifics in the inflammatory pathway, such as Entyvio, Stelara and Xeljanz. And, as with any medication you take, from Tylenol to biologic medications, there are always risks to consider. These are the safety concerns highlighted from the talk below: 

IL-12 and IL-23 inhibitors - what are our safety concerns? 

Data from the PSOLAR registry showed no increased risk of: 

• Serious infections

• Malignancy (except non-melanoma skin cancers)

• Major adverse cardiac events 

• All-cause mortality (death)

JAK inhibitors - what are our safety concerns? 

• Infection - herpes zoster (shingles)

• Thromboembolism/VTE - aka blood clots; this was seen in Rheumatoid Arthritis (RA) literature 

• All-cause mortality (death) - also seen in RA literature

• Increased total cholesterol, HDL and LDL cholesterols

• Cardiovascular events - this could mean heart attacks, strokes, etc. 

Anti-trafficking agents, specifically S1P Receptor Modulators which prevent lymphocytes from contributing to tissue inflammation - what are our safety concerns? 

• Serious infection - herpes zoster (shingles), PML (progressive multifocal leukoencephalopathy)

• Bradyarrhythmia and AV conduction delays - heart issues 

• Macular edema - visual problems

A good thing I noticed when I was looking at the study results on newer medications in the pipeline is that they all look at both clinical and endoscopic remission. This is a step in the right direction for us as IBD patients since things may look great on endoscopy or colonoscopy, but we may not feel well clinically. I hope that the clinical remission criteria look at patient-centered endpoints as well.

Portion from Positioning IBD Therapies 

Going off of our information above, Dr. Cross reviewed some important goals of therapy when considering newer IBD therapies and how they affect the patient based on low- and high-risk disease, among other things. Our goals of therapy are to induce clinical remission (no IBD symptoms), avoid short- and long-term toxicity of therapy, maintain steroid-free remission, enhance quality of life, achieve mucosal healing in the gut (aka deep remission), prevent/treat complications of IBD and to decrease unnecessary health care expenditures such as ER visits and hospitalizations. 

There have also been studies, such as the CALM study, that look at a “treat to target” approach for patients. This includes targets such as absence of ulceration via endoscopy/colonoscopy or other imaging modalities, and does not just rely on resolution of symptoms alone as the only target. The CALM study, which involved Crohn’s patients, found that the treat to target approach led to higher rates of mucosal healing than typical clinical management. Have specific targets to meet, including clinical remission for patients and imaged-guided remission could help streamline treatment and increase the involvement of the patient in their care.

Dr. Cross also discussed how to approach highly-effective treatments in IBD patients. This decision is based on the severity of symptoms, the inflammatory burder, risk factors for severe disease or a disabling disease course and the presence/absence of complicated Crohn’s disease. Once the decision has been made by you and your provider to initiate highly effective therapy, there are even MORE factors to consider! These include: 

• Is there evidence that one agent is more efficacious than another? 

• How severe are the patient’s symptoms? 

• What safety considerations are present? This could include an elderly patient, having comorbid conditions or being risk-averse. 

• Does the patient have a preference regarding mode of delivery? This can mean taking a medication by mouth, injection, IV infusion, etc. 

• What type of insurance does the patient have? I’m so glad they’re taking this into consideration! As much as providers wish they didn’t have to consider this when prescribing the therapy for patients, this is so important to keep in mind. 

• Does the patient have extra-intestinal manifestations of disease? This can mean things like arthritis, uveitis (eye inflammation), skin changes and others. 

• Are patients with a uterus/ovaries of childbearing age? 

Without boring you further by reviewing studies and their data, IBD researchers are doing great work at comparing older and newer biologic therapies and how they affect patients who have never been on biologics, have failed biologics, IBD patients with extra-intestinal manifestations and how they compare in IBD patients with moderate to severe disease. 

Based on studies comparing these various aspects of treatment and how newer therapies that target more specific aspects of inflammation in IBD, the decision to start highly effective therapy is one that should be made with you in mind, but with your GI provider taking your entire clinical picture and risk factors into account. The goals of treatment will be clinical remission and endoscopic improvement. Based on current data, it is recommended that IBD patients who are older, have less severe symptoms/inflammatory burden and those with comorbid conditions take a “safety first” approach - utilize ustekinumab (Stelara) or vedolizumab (Entyvio) as their data shows improvement and has the least amount of serious side effects. 

For IBD patients with more severe symptoms, it is recommended to start with infliximab (Remicade) or tofacitinib (Xeljanz); however, Xeljanz should be avoided in patients with a uterus/ovaries who are of childbearing age. In IBD patients with prominent extra-intestinal manifestations, they recommend anti-TNFs, tofacitinib or ustekinumab. I know this all sounds like a lot, but know there are inflammatory-specific treatments being studied in the pipeline and that IBD researchers are comparing current treatment modalities and how they can best serve their patients with evidence-based data for treatment in conjunction with your clinical picture. As always, if you have questions about a particular treatment or side effects (anything really), always ask your GI provider. They went to school for years to be able to care for you, and they should be happy to answer any questions you have about treatment. All questions are good questions, and I hope this article was interesting and inspiring for you as you continue on your IBD journey. 

AIBD 2020: Highlights of the 1st Fellows Session on Translating the Language of IBD to the Patient

As part of the Advances in Inflammatory Bowel Diseases (AIBD) conference, I joined the Fellows Session I: Translating the Language of IBD to the Patient. The session was co-chaired by Christina Ha and Lisa Malter and was targeted at Fellows. For those who aren’t familiar with the medical training system in the United States, a Fellow is a doctor who has completed their residency (specialist training programme), and elects to complete further training in a speciality, such as gastroenterology.

There were a number of distinguished healthcare professionals from the IBD community involved in moderating and facilitating different aspects of this session, covering: different frameworks for effective partnering between IBD providers and people with IBD; how doctors can help to inform and empower people with IBD; choosing the optimal IBD therapy as a shared decision-making process; and the goals of caring for people with IBD. Attendees were split into different breakout groups for discussion at several time points during the session, with groups consisting of up to 10 Fellows and one member of the conference session faculty.

Dr. Regueiro discussed a framework for choosing the optimal IBD therapy, highlighting the concept of ‘treat-to-target’. ‘Treat-to-target’ is based on finding and defining appropriate treatment targets, using available evidence. For certain conditions, like high blood pressure, there are very clear targets which should be met, such as having a systolic blood pressure (top blood pressure number) less than 140 mmHg; since otherwise, you are at a higher risk of a stroke or heart attack. ‘Treat-to-target’ in conditions like IBD are a little more challenging, because the ‘target’ is less clear or straightforward. For example, some doctors say that it should be the normalisation of biomarkers (e.g., fecal calprotectin in range), whereas others argue for mucosal healing (disease activity is not seen during an endoscopy procedure), and histological healing (complete recovery of the digestive tract, with absence of inflammation or structural changes under the microscope).

Dr. Regueiro then went on to summarise the current IBD therapy landscape, prompting for the choice of biologic or small molecule to be personalised for every individual person with IBD. He recognised the need to start biologic/small molecule therapy earlier, particularly for those at high risk for rapid progression. He outlined four key groups of treatment falling under the biologic/small molecule categories as we enter 2021: 

• Anti-TNFs (e.g., adalimumab, certolizumab, golimumab, infliximab);

• Anti-IL-12/-23 (e.g., Ustekinumab);

• Anti-α₄β₇ integrin (e.g., Vedolizumab);

• JAK inhibitors (e.g., Tofacitinib).

An important part of the conversation around the most suitable treatment for people with IBD relates to treatment safety. Dr. Regueiro highlighted the importance of open and honest conversations between doctors and people with IBD, and the need for transparency in evidence. During his presentation, he presented a new safety pyramid of different treatment options based upon available evidence, including conventional treatments such as steroids and thiopurines. Regueiro stated that this safety pyramid was most relevant at the time of AIBD 2020. The safest treatments were vedolizumab and ustekinumab. These were followed by single treatment with anti-TNFs (e.g., adalimumab, certolizumab, golimumab, infliximab) and tofacitinib. Thiopurines (e.g., azathioprine, 6-mercaptopurine, thioguanine) and combined thiopurine/anti-TNF treatment then followed, respectively. Steroids were seen as the least safe treatment for people with IBD.

Laura Raffals spoke about the goals of caring for people with IBD, emphasising the privileged position of healthcare professionals to be able to support people with IBD. She also highlighted the importance of a multi-disciplinary approach to care, recognising that the doctor alone is inadequate. As part of the team, you ideally need nurse practitioners/specialists, physician assistants, medical assistants, pharmacists, dieticians, advanced practice providers, and social workers, to ensure that care is holistic and meets the needs of every individual person. This also needs to include those outside of gastroenterology, including the likes of other specialists (e.g., rheumatology), surgical teams, primary care providers, radiology, pathology, behavioural health specialists, and support service providers, to name but a few. 

Discussion continued about the need to think about preventative care, such as immunisations, bone health and cancer, and how this should be optimally achieved with other healthcare professionals and people with IBD. Ideally, healthcare maintenance should be co-managed between specialists and primary care providers; however, this is not always the case, leaving people with IBD feeling ‘lost’. Specialists in those circumstances recommend checklists to help ensure preventative measures are considered from the outset.

Access to care also needs to be fit for purpose, combining in-person care, telephone care, urgent care, support services, electronic access to information, data, and services, and education. In terms of looking forward, we have already seen a glimpse of what the future of healthcare will look like as a result of the COVID-19 pandemic. The likes of remote monitoring, telehealth and self-scheduling are likely to increase, and should be used in the right situations, dependent on the specific needs and wishes of people with IBD. Laura finished by saying, “patients are expecting care on their terms”, which is indeed a fitting way to summarise the changing healthcare provider-patient relationship as we move in 2021 and beyond. 

AIBD 2020: Management of IBD in Pregnancy

It can be hard to focus on our future goals and what our life will look like after we get a diagnosis. The amazing thing is, even with being chronically ill, we can have fulfilling and successful lives. One topic that is oftentimes a worry for IBD patients is pregnancy and what that will look like for us once we get a diagnosis. Dr. Uma Mahadevan M.D. at UCSD Colitis and Crohn’s Center presented on the Management of IBD in Pregnancy and this session brought concrete important knowledge on what is currently known for dealing with IBD and pregnancy. She focused on the impact of IBD on pregnancy outcomes, the management of patient medications, and IBD care during both delivery and postpartum. I have broken down the session for patients to digest it easier and read the facts about dealing with pregnancy and IBD, from contraceptives to the delivery process.

Preconception:

-       Preconception planning and education are vital for a health pregnancy! If you are considering starting a family, it is important to first talk with your GI provider and remember that this should be an interdisciplinary process and may include OB’s, Maternal-Fetal Medicine Specialists, Nutritionists and Pediatricians.

-       With regards to disease management; GI’s will suggest a 3-month steroid-free remission prior to conception and will most likely confirm this through an endoscopy. Methotrexate should be stopped three months prior to conception.

-       OB provider might ask for low-dose aspirin, which may reduce risks of preeclampsia.

-       Cannabis is not recommended in regards to pregnancy as it can be passed through breast milk.

-       With regards to contraceptives, what Dr. Mahadevan recommended is long-acting reversible contraceptives as opposed to pill contraceptives and estrogen.

9-month Pregnancy Plan:

-       If your IBD is in remission, you can expect a GI and lab work visit every trimester and as needed. There will be counseling on mode of delivery.

-       If your IBD is in a flare during pregnancy, you should be doing a GI follow-up every two weeks and possible adjustment of medication. Other methods of managing flares can include lab work, endoscopy, radiologic imaging, and surgery. Again, you will consult your doctor about the delivery method.

-       In regards to medication, if you are on biologics, expect to continue throughout your pregnancy without stopping. Aminosalicylates and thiopurines can continue throughout as monotherapy.

-       UC patients are more likely to experience flares during pregnancy, this may be because less UC patients are on biologic therapy.

-       PIANO, which is a 1700 patient prospective registry of pregnancy outcomes in women with IBD, showed that fetal exposure to both biologics and thiopurines had no increase in congenital malformations, preterm births, infections in first year, or low birth weights. This is such an amazing study and brings many of us patients at ease.

-       Stopping an anti-TNF can actually increase relapses in disease but no impact on an infant’s infection. Dr. Mahadevan said that she did not increase the dosage of an anti-TNF no matter the weight gain during pregnancy.

Delivery:

-       Most women with IBD can have a successful vaginal delivery! However, often times planned cesarean sections are done and those with an active perianal disease and rectovaginal fistulas should get a cesarean section.

-       With a vaginal delivery, biologics can be resumed 24 hours after the delivery if there is no infection found and 48 hours after a cesarean if no infections are found.

-       Methotrexate and tofacitinib should not be used when breastfeeding. Thiopurines and biologics can be continued.

-       All vaccines should be given on schedule to the newborn except you should avoid live vaccines for the first 6 months if there is in-utero biologic exposure.

While it can be daunting to start the process of building a family while you have IBD, it is doable. The research shows that there are excellent developmental milestones for children and the research only continues to get stronger. If you are interested in learning more about managing pregnancy and IBD check out IBDparenthoodproject.org as well as the PIANO research initiative!

AIBD 2020: A Lens on COVID-19 and IBD

I enjoyed attending the session “A Lens of COVID-19 and IBD”, specifically those chaired by Dr. Maria Abreu, Dr. Michael Kappelman and Dr. Brennan Spiegel. We reviewed some basics of COVID-19 pathophysiology, updates from data gathered from the Secure-IBD Registry, European updates and the role of digital health in IBD in the era of COVID-19. 

If you want a little background or review of the virus before we dive in, COVID-19 is a single-stranded RNA virus that is spread primarily by respiratory droplets (coughing, sneezing, etc.). We know that disease severity of COVID-19 varies greatly, from some people being completely asymptomatic to those who are so ill they need care in the ICU. They can include, but are not limited to, fever, cough, shortness of breath, nausea, vomiting and diarrhea. Studies have shown that patients can have prominent GI symptoms, especially in patients who are hospitalized. 

Good news that we have found out through studies are: 

• IBD patients are not more susceptible to COVID-19 than others - there is not evidence supporting this so far. 

• COVID-19 is present in stool and can infect cells grown in a culture in a lab, but there are no known cases from contaminated stool. 

• Biologic medications, such as anti-TNFs (think Humira), JAK-inhibitors (think Xeljanz) or anti-interleukins (think Stelara) seem to be potentially beneficial in COVID-19 infection. Some of these therapies are being looked at further as potential COVID-19 treatments.

Some information that we know could potentially make COVID-19 worse in IBD patients: 

• COVID-19 causes dysbiosis in the microbiome, and we know that there is a relationship between dysbiosis and disease severity.

• A study from the Veterans Affairs (VA) system showed that COVID-19 severity was more dependent on comorbid conditions than being on thiopurine medication. This means that the more chronic conditions you have, the more likely a course of COVID-19 is to be severe. 

• Broad immunosuppression appears to lead to worse outcomes. So, taking a medication like prednisone that broadly suppresses all arms of your immune system is not ideal. However, if you are in a situation where your body needs prednisone, then your GI provider may weigh the risks/benefits of these medications. 

• There is some data that suggests that mesalamine and sulfasalazine medications could lead to slightly worse COVID-19 infections. 

The next segment of this discussion focused on updates from the Secure-IBD registry, a voluntary reporting system for COVID-19 occurring in IBD patients that started in mid-March. This system has been utilized by IBD providers in 62 countries and 47 US states as of late November. The mean age reported in 40 years old, and 57% of patients have Crohn’s disease. From the data we have, it is difficult to say if there is true increased mortality risk in IBD patients since we need more data and we are still learning about this novel virus. Here are some highlights from the other statistically significant data from the registry: 

• Pediatric IBD patients appear to do quite well, which is in line with findings from the rest of the pediatric population. 

• There is a strong trend with increasing age by decade and need for hospitalization and even death, but this also matches data on non-IBD patients. 

• IBD patients with COVID-19 do have more GI symptoms, with abdominal pain and diarrhea being hallmark. 

• Anti-TNF biologics seem to have a protective effect against COVID-19, and this matches data coming from the rheumatoid arthritis (RA) community as well. 

• Combination therapy with immunomodulatory medications seems to lead to more requirements for ICU admission or severity, but this will continue to be closely monitored as more data is gathered. 

Lastly, we looked at the role of digital health in IBD; Dr. Brennan Spiegel has been doing research with virtual reality (VR) headsets with his IBD patients, specifically as a way to target intractable abdominal pain and other forms of chronic pain that IBD patients deal with in the hospital setting. VR has long been used in studies about pain and perception, and was found to reduce anxiety and self-administered Propofol (that nice sleepy drug we all get!) during routine colonoscopies back in the 1990s. For many of us watching, we are so excited to see a non-pharmacological treatment utilized for IBD patients. We hope this can become widely available and affordable for all patients and that we can find ways to use it in outpatient settings. If you are interested, Dr. Spiegel suggested visiting virtualmedicine.org and clicking under the “Clinical Tools” link to learn more and explore products. Do you think using VR as a way to treat pain could be a long-term addition to a comprehensive team approach to treatment? 

It was great to hear from multiple experts about COVID-19 and IBD. I think that, all in all, the data so far shows that we are not as high risk compared to the general population as we originally thought. I find it hopeful that some of the biologic medications many of us take are considered to be protective. Yet, the most important things we can do now is to continue to be careful, social distance, wash hands, and wear your masks religiously. I hope to see digital tools continue to be utilized not only with telemedicine appointments, but with ways to innovate and find treatment options such as VR that complement medical treatments for IBD.

AIBD 2020: Advances in Pediatric IBD

On the final day of AIBD, the session I chose to focus on for this article was “Advances in Pediatric IBD”, which included presentations from Dr. Anne Griffiths, MD, FRCPC, Dr. Joel Rosh, MD, FACG, and Dr. Carlo Di Lorenzo, MD.

Dr. Griffiths opened with a review of the advancements in pediatric IBD throughout the year. In her presentation, she noted that early use of anti-TNF therapies are associated with remission and a decreased risk of disease progression later on in life. This led into Dr. Rosh’s presentation on when to begin treatment with anti-TNF therapies. Dr. Rosh noted that while 40% of pediatric Ulcerative Colitis (UC) patients can maintain steroid-free remission with mesalamine, the remaining 60% of pediatric UC patients are likely to need immune-modifying therapy.

When determining which biologic to use on pediatric IBD patients, Dr. Rosh listed that some of the factors include:

• Time of disease onset

• Biomarkers (the patient’s test results)

• Safety and efficacy of the treatment

• Psychosocial aspects and the opinion of the pediatric patient themself

The presentation on pediatric IBD included what was, in my opinion, a well-rounded approach to holistic care. The doctors spoke to the importance of mental health care, and other lifestyle factors that may have a role in a patient’s symptoms. The majority of this information came from Dr. Lorenzo’s presentation on “Therapeutic Approaches to Functional Bowel Disorders in Children with IBD”. In other words, his presentation covered the segment of the pediatric IBD population that also suffers from Irritable Bowel Syndrome (IBS). Dr. Lorenzo explained in his presentation that approximately 35% of IBD patients fit the criteria for IBS as well, and it is especially common in patients with Crohn’s disease. Even I myself have been diagnosed with having IBS and IBD.

This combination of IBD and IBS in patients can affect multiple aspects of a person’s quality of life, including but not limited to increased fatigue, anxiety and depression. In order to combat this negative impact on mental health and quality of life, Dr. Lorenzo outlined steps that a patient and their care team can make, which I have listed below:

• Involve mental health providers earlier on in the patient’s care. In some clinics they even have providers who specialize in mental health for IBD patients.

• 30 minutes of daily exercise is associated with decreased symptoms. This does not necessarily mean vigorous exercise (as that can be challenging for many of us with chronic illness) - but even a walk around the neighborhood can improve a patient’s well being.

• Providers are encouraged to teach parents to respond to their children with reassurance. This was associated with a decrease in pain among the children.

• Symptoms may worsen with less sleep. Healthy sleeping habits can increase a patient’s quality of life.

As someone who was diagnosed at a young age, and was introduced to the world of IBD as a pediatric patient, I enjoyed this talk and seeing the advancements that are being made for the pediatric community. After attending AIBD this past week, I look forward to the future of IBD treatment and advancements with confidence and positivity.

AIBD 2020: Special Considerations in the Management of Young(er) Patients with IBD

After attending the session, Special Considerations in the Management of Young(er) Patients with IBD… And What They Can Teach Their Elders, I am inspired to hear the radicalization of care that is being conceived for pediatric IBD. Dr. Sandra C. Kim, MD, the Director of the IBD Center at the PMC Children’s Hospital of Pittsburgh, broke down the session into three parts. The first talked about the precision of medicine in Very-Early Onset IBD (VEOIBD), the second was on nutritional therapy, and lastly, the third focused on psychosocial care for young IBD patients. This is vital information as there is an increase in annual incidences of IBD pediatric diagnoses; in fact, there has been a 50% increase in children with IBD over the past decade. Children with IBD also deal with disproportionately greater costs than adults and accumulate a higher cost per lifetime. There is great importance in centering pediatric GI and adding nuance to the conversation around holistic care. Following is the breakdown of the three-part session Dr. Kim presented. 

-   “What I really needed to know, I learned in kindergarten: Precision medicine in VEOIBD”

o   VEOIBD includes patients that are less than 6 years old and often involves a genetic disorder. It is also the fastest growing demographic in IBD patients.

o   Younger patients, those with a stronger disease, and those with family history tend to have some form of Monogenic IBD, which can impact the therapy given. It is important to have this distinction made to better choose between therapy options.

o   For evaluations, GI doctors will start by lab testing, searching for complete blood count and checking inflammatory markers. Other areas of interest and evolution may include Immunological studies, genetic evaluation, and histology if needed. If the disease is more complex, there could be an incorporation of other specialists including Immunology, pathology, or surgeons.

-   “Let thy food be thy medicine: Nutritional therapy”

o   Exclusive Enteral Nutrition (EEN) is a no-solid food, formula–based diet. According to ECCO/ESPGHAN guidelines, EEN is recommended as a first choice for induction therapy for children with mild to moderate Crohn’s Disease, especially for those patients who have not finished growing.

o   Dr. Kim also provided a study specifically done comparing a combination of the Crohn’s Disease Exclusion Diet (CDED)–which includes removing animal fat, wheat, dairy, red meat, emulsifiers, maltodextrin, and carrageenan–and Partial Enteral Nutrition vs. EEN by itself. The study showed that the CDED plus Partial Enteral Nutrition combination had higher rates of remission and higher tolerance rates..

o   However, as we know, timed diets as intense as these are often not sustainable. Dr. Kim points out there are real-life barriers to access nutritional diets such as these two. The biggest barriers include the time and energy being put into them and the cost of them. They are currently predominantly seen used by families in a higher socioeconomic status. I am really grateful that Dr. Kim brought up the importance of access to care and that doctors need to be in tune to be sure that the care they are providing or suggesting is truly accessible to their patients.

-   “It takes a village: Collaborative IBD Care”

o   Depression is present in the majority of IBD pediatric patients, and depression is increased when disease is active and steroid is used as a treatment.

o   Children with IBD are shown to have a lower quality of life and social interactions are greatly impacted. Anywhere from ⅓ to ½ of children with IBD have limitations in daily life activities.

o   The greatest gap in pediatric GI care noted was in psychosocial care. Specifically, patients felt there was no person to discuss transition between adult and pediatric GI treatment with. This experience is one I am sure many of us can relate to. There needs to be proactivity from both pediatric GI and adult GI providers and the process should be started well in advance.

o   Other tools for successful transitioning include: utilization of checklists, educational tools, actively engaging patients and families, and written health care transition plans. Also, the dedication of clinics for adolescent patients.

o   Dr. Kim offers for GI clinicians to ask the tough questions and have a comprehensive medical summary ready to go.

o   Both adult and pediatric MD’s should anticipate existing gaps of knowledge and eagerly teach self-management skills to patients.

As a patient advocate with CCYAN and having received a diagnosis at a young age myself, this session gave me so much hope, specifically in regards to the acknowledgement of the impact that IBD has on a child's psychosocial development as well as validation of the toll that IBD has on a child’s mental health. MD’s, such as Dr. Kim, hear our stories and advocacy work and remind us why we do what we do.