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.

AIBD 2020: Optimal Management of Clostridium Difficile Infection (CDI) and CDI Recurrence in Patients With IBD

C. difficile is a naturally occurring gut bacteria which is harmless, until the gut bacteria balance gets altered by antibiotics, allowing C. difficile to multiply. This is when it becomes an infection, leading to diarrhea and potentially causing serious bowel issues. Many cases of C. difficile infections occur in a healthcare setting because of their links to antibiotic therapy.

As mentioned in my previous article, a C. difficile infection (CDI) can be incredibly destabilising for IBD patients and can cause flare-ups even in patients who had previously been in deep remission. Hence, to know more about CDI and IBD, I attended the AIBD 2020 CME Symposium on ‘Optimal Management of Clostridium Difficile Infection (CDI) and CDI Recurrence in Patients With IBD’. 

The first talk in the symposium was given by Dr Sahil Khanna on the epidemiology, risk factors, and diagnosis of C. difficile infections in IBD patients, and here are the key takeaways from his presentation - 

• The number of patients with C. diff infections is rising every year, and so is the proportion of patients with both IBD and C. diff.

• The risk of recurrent C. diff infections is higher for patients with IBD compared to patients that do not have IBD.

• Risk factors for CDI in IBD - antibiotic use, prior CDI, colonic disease, active/uncontrolled IBD, active immunosuppression (biologics), chemotherapy, long-term hospitalisation, surgery

• Patients with IBD and CDI are more likely to not respond to IBD therapy, undergo surgery, have more frequent ER visits/hospitalizations, greater recurrence and mortality rates, and incur higher healthcare costs compared to IBD patients with no CDI.   

• All IBD patients with a flare should be tested for CDI because of overlapping symptoms.

• A PCR test is insufficient for testing CDI. A 2-step algorithm comprising of GDH and EIA is desirable.

The second talk in the symposium was given by Dr Ari Grinspan on the treatment of CDI, and the important points of his presentation, from a patient perspective, are listed below - 

• IBD patients are at a very high risk of CDI recurrence.

• FMT is a safe and effective option for treating recurrent CDI. It has a cure rate of 80-90% among IBD patients with recurrent CDI and the probability of a post-FMT IBD flare is very low. It also improves the microbiome diversity. 

• FMT should be done earlier, perhaps after a 1st recurrence of CDI, for better long-term results.

• Escalation of IBD therapy after a C. diff infection is safe.

• COVID hasn’t increased CDI rates, but patients with diarrhoea should be checked for CDI.

• OpenBiome (stool bank) is on a temporary clinical hold because of COVID, hence, FMT for recurrent CDI is on hold at many centres. 

The symposium concluded with case discussions and a Q/A session, of which an important point to note was

• Probiotics have no role in the treatment of CDI among patients with IBD. Recent research has shown that probiotics may not only be ineffective at preventing recurrence but may even cause harm. 

The symposium, although directed at clinicians, was enlightening to me as a patient. Chronic illness takes over almost every aspect of our lives, and as a patient, the more knowledge and information we have about what we are dealing with, potential scenarios, control measures, the more we feel at ease and are able to move forward with life without having a constant fear of the unknown. This information is even more valuable to patients living in regions with substandard healthcare facilities and/or are financially strained. I’ve thoroughly enjoyed AIBD 2020 so far, and even though many sessions have been technical, it has really increased my understanding of my condition, and also made me aware of my own lapses in self-care. I hope this article helps you in similar and other ways. 

Thank you! Stay safe :)

AIBD 2020: Talking Nutrition with Your IBD Patients

On the first day of AIBD 2020, one of the breakout sessions I attended was “Talking Nutrition with Your IBD Patients.” Led by Dr. Maria Abreau from the University of Miami Miller School of Medicine, she was joined by Ashwin Ananthakrishnanan, MD, MPH (Massachusetts General Hospital and Harvard Medical School); Kelly Issokson, MS,RD, CNSC (Cedars-Sinai); Andrew Grossman, MD (Children’s Hospital of Philadelphia); and Mark Mattar, MD, FACG (MedStar Georgetown University Hospital). 

I want to start out by saying that this session and what was discussed made me extremely hopeful for the future of patient care when it comes to incorporating and implementing complementary therapies. The word complimentary was used to highlight the fact that dietary therapies are not necessarily alternative therapies, but can play a role in and be an integral part of treating mild to moderate IBD. 

As Dr. Abreau mentioned, too often patients are told by doctors that food doesn’t matter, and that they’ll come to her and say, “My last doctor said it doesn’t matter what I eat.” 

Having personally experienced this exact situation firsthand, when a doctor once told me that no food will affect me except for popcorn and Chinese food, to hear an expert in the field finally say that, “You lose the patient’s trust when you tell that diet doesn’t have anything to do with it,” is in itself a step in the right direction. Her hope is that those who joined this session, which was specifically centered around approaching and having discussions about nutrition with patients, will have at least learned not to say that it doesn’t matter what you eat. I share that same hope. And no, this does not mean that food causes IBD, and it certainly doesn’t mean that food can cure IBD - this just means that food, something that is a part of our everyday lives, does play a role when it comes to your body. It means that both the progression and management of the disease, as well as the process of bringing one closer to remission, need to be seen with a multi-faceted lense. 

The presentation consisted of addressing a variety of patient scenarios, from the management of stricturing of Crohn’s disease to a teenager with growth stunting. By going through each case and discussing their individual situations and needs, this inherently showcases how incredibly individualized both IBD and nutrition are. 

When discussing the presence of strictures in patients, as seen in one of the patient cases discussed, the panel brought up an important point. While this is a scenario where low fiber needs to and should be emphasized, low fiber is brought up much more often than it should be. It ends up being the default suggestion to everyone, which is not beneficial, and can actually be harmful. Instead, patient individuality needs to be at the forefront. 

There were a few distinct common threads that were woven through each of the cases that I want to especially highlight below. 

1: The importance of Mental Health/Mindset Surrounding Food

• As a patient, it gives me hope that doctors and dieticians are working together and having discussions about helping patients with the very real food avoidance/ food fear that can come with IBD by focusing on not only mindset reframing, but also their own verbiage. It is critical to help patients establish a better relationship with food as part of their healing, and this is something that requires support, which I’ll dive into soon when addressing the importance of working with a dietitian who is well-versed in IBD. 

• Too often, it creates great duress in patients when they are presented solely with a seemingly-never ending list of foods that are off limits to them; the thought of food elimination alone can be triggering on top of an already overwhelming situation. Instead of solely focusing on, “What do I need to avoid?” it’s imperative to help shift it to “What CAN I eat?” (like proven anti-inflammatory foods). In doing so, it’s also important that more doctors begin to make it clear to patients that in a setting of active inflammation, food intolerances may be different than they are in remission. 

• The fact that these conversations are being had and these changes are being made on a professional level is going to be of immense benefit to both the physical and mental health of IBD patients. 

2: The Importance of Nutritional Status 

• Assessing and addressing nutritional status in IBD patients is a must, both in general and in those on dietary therapies when any kind of elimination is involved. This includes vitamin b12, d, iron, etc.  

• As I learned in another session, “Infectious Complications in IBD and How to Manage the Patient with Ongoing Infection,” malnutrition increases the risk of infections in IBD patients. Intervening early and being vigilant in respect to nutritional status is imperative to mitigating additional repercussions. 

3: The Importance of Working with a GI-trained Dietitian 

• To sum it all up, one of the most prominent threads woven throughout this session was the need for quality, accessible dietitian support. All of the above points come back to this one; because there is wide variability in which foods can trigger symptoms in an individual, because food fear is a very real thing, and because malnutrition can lead to even more complications, all experts on the panel recommend seeing a GI/IBD focused dietician. 

• It’s imperative to know that nutritionists are NOT registered dieticians. Yet, as patients, it can often be difficult and challenging to identify and find true GI or IBD focused dietitians. To help with this, as Kelly Issokon suggested, these following sites have searchable databases to locate one:  

  • https://iffgd.org

  • https://www.eatright.org

I hope that with resources and insights like the ones above, and with conversions like these, access to dietary therapies, information about dietary therapies, and the ability to succeed with dietary therapies (again, as complementary therapies, not necessarily alternative therapies), will become more attainable and feasible for all IBD patients. 

AIBD 2020: Highlights of IBD Publications in 2020

As part of the Advances in Inflammatory Bowel Diseases (AIBD) conference, I joined Session V: 2020 Editor’s Focus, introduced by Miguel Regueiro and moderated by David Rubin. In the session, David, alongside Gary Lichtenstein, Jean-Frederic Colombel, and Raymond Cross showcased some notable pieces of research that had been published in various gastroenterology journals throughout 2020. These were followed by the best clinical abstract research presentation by Shintaro Akiyama, and a summary of the pregnancy and IBD study called ‘PIANO’ by Uma Mahadevan.

Notable papers from four different gastroenterology journals were discussed. The journals included Gastroenterology https://www.gastrojournal.org, the American Journal of Gastroenterology https://journals.lww.com/ajg/pages/default.aspx, Clinical Gastroenterology and Hepatology https://www.cghjournal.org, and Inflammatory Bowel Diseases® https://academic.oup.com/ibdjournal.

Managing IBD during the COVID-19 pandemic

David Rubin and colleagues published an article about managing IBD during the COVID-19 pandemic (https://www.gastrojournal.org/article/S0016-5085(20)30482-0/fulltext). The key take home messages from this article were that:

1. people with IBD do not appear to be at a high risk for infection with SARS-CoV-2, the coronavirus which causes COVID-19;

2. People with IBD who aren’t infected with SARS-CoV-2 should not stop their IBD treatment;

3. People with IBD who are infected with SARS-CoV-2 but have not developed symptoms of COVID-19 should temporarily stop methotrexate, thiopurines (e.g. azathioprine, 6-mercaptopurine, thioguanine), and tofacitinib, while delaying biologics for two weeks while monitoring for symptoms of COVID-19;

4. People with IBD who develop COVID-19 should temporarily stop methotrexate, thiopurines, and tofacitinib, and biologics, until their symptoms have gone, or if available, when a follow-up test comes back negative;

5. The severity of COVID-19 and IBD should result in a careful risk-benefit decision regarding COVID-19 treatment and IBD treatment.

One study by Erica Brenner and colleagues (https://www.gastrojournal.org/article/S0016-5085(20)30655-7/pdf) found that steroids, but not anti-TNF biologics (e.g., adalimumab, certolizumab, golimumab, infliximab), are associated with worst COVID-19 outcomes in people with inflammatory bowel diseases (IBD), providing some reassurance for those on anti-TNFs.

Identifying people with Crohn’s disease who are more likely to fail on certain biologics

Aleksejs Sazonovs and colleagues in the UK published a paper (https://www.gastrojournal.org/article/S0016-5085(19)41414-5/abstract) which looked at a new way of potentially predicting those people with Crohn’s disease who may develop anti-drug antibodies to infliximab and adalimumab. When people develop anti-drug antibodies to biologics, they can become ineffective, resulting in a change in treatment. This study found that a particular variation of a gene, called HLA-DQA1*05, was linked with an increased chance of developing anti-drug antibodies to infliximab and adalimumab in people with Crohn’s disease. Although further research is needed, if this finding is proven, it could mean that people with this type of gene could be identified before starting treatment, so that they could be placed on different treatments or combinations of treatments to help prevent the development of anti-drug antibodies.

Low FODMAP diet does not influence microbiome

Cox and colleagues performed a study in people with inactive IBD looking at the FODMAP (fermentable oligosaccharides, disaccharides, monosaccharides and polyols) diet. They looked for an effect on symptoms, the fecal microbiome, and markers of inflammation. Although a low FODMAP diet appeared to improve irritable bowel symptoms, the researchers did not find any difference in the composition of the microbiome and markers of inflammation. They concluded that they don’t really know whether a low FODMAP diet has anti-inflammatory effects for those with IBD.

Safety of newer medicines called JAK inhibitors

Olivera and colleagues looked at the safety of a newer type of medicine used to treat IBD (and other immune-related conditions) called JAK inhibitors (short for Janus Kinase inhibitors). The only JAK inhibitor medicine approved in Ulcerative Colitis is called Tofacitinib, although there are others available and licensed in rheumatology. The researchers looked for the risk of serious infections and infection with the varicella-zoster virus (herpes zoster infection). Compared to other treatments, serious infection risk with JAK inhibitors were no different than other treatments used. However, there was an increased risk of herpes zoster with JAK inhibitors. Therefore, people starting these treatments should receive a vaccination against herpes zoster.

Differences in IBD gut microbiota

Pittayanon and colleagues looked for differences in gut microbiota in people with and without IBD. Although some differences between Crohn’s disease and ulcerative colitis were seen, the researchers concluded that while there were some differences between people with and without IBD, these findings were not consistent. 

Promising results from a new biologic called Mirikizumab

Sandborn and colleagues presented findings from a Phase 2 clinical study on a new biologic called mirikizumab in people with ulcerative colitis. Mirikizumab is known as an anti-IL-23 biologic, since it attaches to IL-23, an inflammatory molecule in the body involved in IBD.  The study looked at clinical remission, clinical response and improves on endoscope at 12 weeks. The results were positive and showed that the 200 mg dose seemed to be more effective than 600 mg. As a result, mirikizumab would move into a larger phase 3 clinical study in a larger group of people.

Subcutaneous injection of vedolizumab in ulcerative colitis

Sandborn and colleagues also looked at the effects and safety of vedolizumab as a subcutaneous (under the skin) injection, compared to intravenous vedolizumab, which is how it is currently given. In people with ulcerative colitis, the subcutaneous injection had the same effects and safety as the intravenous version. The researchers now wait for the subcutaneous injection to be approved by the medicine regulators. They then expect doctors to begin moving some people with ulcerative colitis over to the subcutaneous injection, which may provide some more convenience for people to fit treatment around their daily lives.

New oral medicine called Etrasimod appears to be effective in ulcerative colitis

Sandborn and colleagues found that a new medicine called Etrasimod at a dose of 2 mg was more effective than placebo, and the study would be progressing from a Phase 2 to Phase 3 study in ulcerative colitis. Etrasimod is a next-generation, once-daily, oral treatment which changes signals within cells involved in inflammation.

Another new oral medicine called Mongersen does not appear to be effective in Crohn’s disease

Sands and colleagues published the findings of a phase 3 study of Mongersen, an oral medicine that targets inflammatory signals in gut cells, in people with Crohn’s disease. Although the phase 2 study showed promising results, the phase 3 study was disappointing, showing that clinical remission was no more likely with mongersen than with placebo. The researchers said that reflections on the negative results led to another piece of research to help them learn why the results of this study were negative. These reflections showed how it is important to ensure that the study design is well thought out. They noted that the phase 2 study was performed in a small number of hospitals in Italy, and pointed out that collecting study data from a single centre can risk the future results of studies.

Other research highlights published in IBD journals throughout 2020

• Antibiotic-resistant intestinal microbiome can persist in people with pouchitis.

• A number of different biomarkers (biological clues) were found to be present years before an IBD diagnosis. This understanding may lead to the development of future trials to prevent IBD for people who are at higher risk, or at least to help ensure people are diagnosed earlier on.

• Home infliximab infusions cost more than office and hospital infusions. Home infusion-based patients were also seen to be more likely to not adhere to their treatment, compared to office and hospital-based infusions. 

• Further studies are required to understand whether further treatment is needed after people have been in hospital with IBD to prevent acute venous thromboembolism (blood clot) within 60 days of being in hospital.

• Imaging of the anus using Magnetic resonance (MR) enterography can reveal unsuspected perianal fistulas in people with Crohn’s disease. 

• IBD-attributable hospital costs declined modestly over time for people with Crohn’s disease, but did not change for people with ulcerative colitis.

• Anxiety and mood disorders increased the risk of stopping anti-TNF biologics, especially during the first year following treatment initiation in over 1000 patients.

• Curcumin was shown to not be effective in preventing post-operative recurrence of Crohn’s disease.

• A Mediterranean diet can improve body composition, liver steatosis and disease activity in IBD. 

• High levels of certain while blood cells called eosinophils is more common in paediatric-onset IBD and is associated with a more severe disease course.

• Primary sclerosing cholangitis-ulcerative colitis (PSC-UC) is a milder form of ulcerative colitis and should be regarded as a unique form of UC. People with PSC-tend to be younger at diagnosis and have milder disease severity, despite being more likely to have inflammation of the entire colon. Response to treatment similar to people with ulcerative colitis.

• Daily aspirin use is not associated with worsening IBD. 

• Infliximab is not associated with excess weight gain in women with IBD.

• Cumulative histologic disease activity is associated with neoplasia in chronic colitis. 

• Anti-TNF biologic use is associated with lower rates of colon cancer, as shown by analysis of the Explores EMR database between 1999 and 2020. Anti-TNF biologics on their own or given with other treatment reduced the rate of colon cancer.

• The prevalence of anxiety, depression, and post-traumatic stress disorder (PTSD) over a 15-year time period in veterans with IBD was shown to be increasing. 

• High dose flu vaccinations are associated with better response to vaccine in people receiving anti-TNF biologics. 

• A Canadian based study in 2016 estimated the cost of IBD, at $ 498 bn for Crohn’s disease, and $ 377 bn for ulcerative colitis. Pharmacy costs were shown to have the largest incremental cost. 

• Direct healthcare costs attributable to IBD have more than doubled over 10 years between 2005 and 2015, driven mostly by increasing expenditures on biologic medicine. 

• The Crohn’s and Colitis Foundation’s Cost of IBD Care Initiative also reported the cost of IBD care to be high. From a study with over 50,000 people with IBD, the average direct costs per year were $ 22,987 per person. Costs per year increased significantly from 2013, driven by the cost of biologics, opioids, steroids, and emergency department use, among other factors.

• High deductible health plans do not decrease costs and are associated with delays in essential care.

Best clinical abstract research presentation - winner of the best clinical abstract

Shintaro Akiyama looked at contributing factors for fistula development in people with IBD treated with proctocolectomy (surgical removal of the colon and rectum), with ileal pouch-anal anastomosis (J-pouch surgery). He found that pouchitis (inflammation of the lining of a pouch created during surgery) can develop in up to 70% of people with IBD after J-pouch surgery. He also highlighted that not all instances of pouchitis are the same, which has led to the development of the Chicago Classification of Pouchitis. He concluded that deep inflammation of the resected colon is a specific predictor for fistula formation in J Pouch, and so people with this may require closer monitoring by their healthcare teams.

Pregnancy and IBD - The PIANO study

Uma Mahadevan talked about the 12-year PIANO study, which included over 1700 pregnant women with IBD in the US. The study is still ongoing and still recruiting those on biologics or small molecules. Of 1490 women with a pregnancy outcome, the average maternal age at delivery was approximately 32 years, with a total pregnancies averaging 2.1. The womens’ disease duration was around 8.3 years, with 62% having Crohn’s disease, 36% having ulcerative colitis, 2% having undifferentiated IBD. Most of them were on infliximab, followed by adalimumab, certolizumab, golimumab, natalizumab, vedolizumab, and ustekinumab. 51 women had multiple biologic exposure (mostly with other anti-TNF biologics).

She concluded that exposure to biologic, thiopurine or combinations of treatment during pregnancy was not associated with increased negative maternal or fetal outcomes at birth or within the 1st year of life. Disease activity of the mothers is an independent risk factor for spontaneous abortion, and preterm birth increased the risk of infant infections.

Healthcare professionals should continue biologic and/or thiopurine therapy throughout pregnancy and lactation, given no evidence of increase in harm from drug exposure and the clear association of active disease with side effects.

AIBD 2020: The Role of FMT in IBD

I attended the Clinical Breakout Session titled ‘Role of FMT in IBD’ chaired by Dr Jessica Allegretti. On the panel were Dr David Binion, Dr Alan Moss, and Dr Monika Fisher.  

Fecal Microbiota Transplant, or FMT, is one of the emerging treatment options for IBD. It is considered as an effective treatment option for C.Difficile infections. As around the world, several clinical trials are underway in India as well. It can be an attractive option for patients in a country like India, where biological therapy is expensive and not covered by insurance. As a result, patient interest in FMT has increased considerably in recent times. 

Although the session was not aimed at a patient audience, I absorbed a significant amount of information that can be useful for patients. Some of the key points to note as a patient were:

• A C.Difficile infection (CDI) is very destabilising for someone with Inflammatory Bowel Disease (IBD). Even patients who have been in deep remission for years can suddenly experience flare-ups post a C.Difficile infection. Hence, it is of utmost important to treat the infection as early as possible in patients with IBD.

• Patients with IBD have a 50% chance of recurrence of C. Difficile infection post-treatment with a 10-day Vancomycin course. 

• COVID has impacted the availability of FMT as a treatment. 

• IBD therapy may need to be ramped up post a CDI, but high-dose steroids should be avoided. 

• Diet can be considered in some regards as a prebiotic and influences the microbiome, which can have significant effects on the clinical course of a patient.

• Patients with mild disease (ulcerative colitis specifically) benefit the most from FMT.

• There is very little data to support the usage of FMT for the treatment of patients with Acute Severe ulcerative colitis. 

• For some patients with mild-to-moderate Crohn’s/colitis, FMT may be beneficial.

• FMT is not yet FDA approved for the treatment of IBD in the absence of CDI. It has to be done in a clinical trial setting.

• FMT can be done for patients with internal pouches as well. The success rate is almost the same as for IBD patients without a pouch.

• Colonoscopic delivery of FMT seems to be more effective and provides the best results.

• Retention of donor material can be an issue for patients. The therapy still works even if some material comes out.

• Sometimes, patients can be sedated to take a small nap post the procedure to avoid loss of material.

AIBD 2020: Clarifying Complications of Therapy

One of the sessions I delved deeply into on the first day of AIBD was “Clarifying Complications of Therapy”, which began with a presentation by Dr. Laurent Peyrin-Biroulet, MD from Nancy University Hospital, on malignancy (cancer) in IBD patients. Following Dr. Peyrin-Biroulet, was a presentation on infectious complications in IBD, by Dr. Edward V. Loftus Jr., MD from the Mayo Clinic.

Before delving into the details of risks and complications associated with immunosuppressive therapy, let us first outline which factors play into how immunosuppressed an individual is. First and foremost, not every patient with IBD is inherently immunosuppressed, rather only those who are on immunosuppressive medications fall into this category. Even amongst patients on the same drug, the following factors alter the amount of immunosuppression an individual may experience:

• Increased age

• Malnutrition

• Comorbidities

• Medications

• Hospitalization

In other words, if two patients are both on the same immunosuppressive drug, but patient A is 20 years old with no comorbidities, and patient B is 60 years old and has COPD, patient B may be at a higher risk.

During the presentation on cancers in IBD patients, Dr. Peyrin-Biroulet noted that the focus was on anti-TNF drugs specifically, and that no robust data was available for other immunosuppressants. I want to make note of that, because this data does not speak for all IBD treatments, or all IBD patients.

Three of the cancers that were discussed in this presentation were skin cancers, lymphoma, and cervical cancer, all of which are associated with heightened risk in IBD patients who are immunosuppressed. That being said, Dr. Peyrin-Biroulet noted certain measures physicians can take to mitigate these risks as much as possible. I’ve created a simplified outline below for each of the cancers discussed:

Skin Cancer

1. Risk: there is an increased risk of non-melanoma skin cancer in IBD patients.

2. Prevention: use of sun protection and skin surveillance.

Lymphoma

1. Risk: there is a risk of lymphomas in IBD patients who are immunosuppressed.

2. Prevention: avoid more than 2 years of combination therapy in young males, and for older males who have tested positive for Epstein-Barr in their past, restrict the use of thiopurine drugs such as 6-Mercaptopurine (6MP), and azathioprine, as they may pose a greater risk of lymphoma in the patient.

Cervical Cancer

1. Risk: there is an increased risk of cervical dysplasia and cervical cancer in IBD patients.

2. Prevention: HPV vaccine is recommended to protect against HPV, which may lead to cancer.

In addition to Dr. Peyrin-Biroulet’s presentation on cancers associated with IBD and immunosuppression, Dr. Loftus spoke to the increased risk of other types of infections among immunosuppressed IBD patients. This included an increased risk of fungal infections, an increased risk for herpes zoster, and the importance of testing (and if necessary, treating) tuberculosis prior to starting anti-TNF therapy. 

In the presentation, Dr. Loftus included a table that I found interesting and informative on determining whether or not to pause immunosuppressant treatment for IBD during an infection, in addition to treating the infection. I’ve simplified the table below, and added examples to the different drug classifications. Please note to consult with your doctor before making any changes to your actual drug treatment plan.

For Thiopurine (Including azathioprine and 6-mercaptopurine [6MP]):

1. Viral: you may need to stop immunosuppressants

2. Bacterial: stop, then individualize plan

3. Fungal: stop, then restart when cleared

4. C.Diff: continue

For Anti-TNF (Including but not limited to infliximab and adalimumab):

1. Viral: probably OK to continue (exception of Hepatitis B)

2. Bacterial: stop, then individualize plan

3. Fungal: stop, then restart when cleared

4. C.Diff: continue

Anti-Integrins (Including but not limited to vedolizumab):

1. Viral: continue

2. Bacterial: continue

3. Fungal: continue

4. C.Diff: continue

An Ecosystem of Advocacy

My fellowship at CCYAN is coming to an end. Coincidentally, I have felt short of ideas these few weeks. I’m writing this one late, partly because it has taken me a long time to fully recover from COVID, and partially because I was torn inside my head about what I wanted to say. Lately, my brain has felt like a cauldron with a stew of thoughts in it. I had been hiding safely in my home from COVID, but now that it got me, it’s time for me to go back to my pre-covid life.

At the time of writing, I’m about to fly back to my campus. I had deferred my exams for the previous semester hoping that the pandemic would settle down by Sept/Oct. That did not happen. I have lost a whole academic year. I now need to work twice as hard to get my degree. The pandemic has also doubled my healthcare expenses, and hence I need to work more than usual, which decreases the time I can devote to my academic work. I have also not been to the doctor in more than a year. After a long time, I have once again felt the fear of things going wrong and beyond my control.

One of the things that I’ve come to realise and feel in recent days is how isolating IBD can be. IBD symptoms can vary from person to person, but when you look at those symptoms in conjunction with life experiences, every one of us is on a very different path and fighting a very different battle. It is true for every chronic condition. One community, one group, can never be the answer. We need multiple communities composed of people with diverse experiences to thrive and work with each other. An ecosystem. Without that, there’ll always be someone feeling alone in their experience.

I have always been someone for whom repressing is more comfortable than expressing. Does that not make me inadequate for the job of a patient advocate? Repressing pain and trauma has enabled me to survive. The goal of life shouldn’t be to survive, though. I have compromised on every other aspect of my life so that every day I can do enough to stay on track with my goals and ambitions. Some compromises must be made, but some are forced upon by circumstance and external agents.

In the ancient world, people believed that the sick were cursed by gods. Treatment consisted of praying and giving a sacrifice to the gods. The ill thought that they were cursed. They were killed when the gods didn’t pay any heed to prayers. You might think times have changed, but they haven’t. Too many of us have been told that our illness is punishment for our past sins. Many of us believe it also, so much so that a patient recently said to me that their experiences didn’t matter because they were not good experiences. India is a country where the concept of “invisible disability” is yet to be introduced. In such an atmosphere, people with chronic conditions and invisible disabilities are forced to compromise. After all, it’s practical and easier for everyone. Any ill person that “complains”, does not radiate positivity and inspiration is useless. The attitude in general, towards sick people in my country, reminds me of the phrase - “Ignorance is bliss.”

So if you’re chronically ill - not only do you have to make compromises in various aspects of your life, not because they should be made, but because it’s comfortable for everyone else, you also do not have access to communities where you can share your frustrations, your experiences with people facing similar, if not the same set of circumstances.

Some say that we should not highlight our disability. Some argue that many people are successful with Crohn’s Disease or Ulcerative Colitis, but they do not talk about it. Talking about it is just asking for pity. The people who are going to succeed will succeed despite it. Such thinking patterns stigmatise our illness and strengthen the notion that patients are the problem, not the illness. Patients are not doing enough; others are.

As with everything else, things will not change unless we accept that there is a problem and that there is a real need. The irony in India is that those with voices do not have the need, and those with needs do not have a voice. There is an urgent need to build communities that provide support and advocate for better solutions.

I often feel that I say the same things every month, but I also feel that these things haven’t been said enough times. So to my fellow patients and the people who understand our needs - keep speaking up and keep talking, until our voices are too loud to ignore.

Thank you. Stay safe.

Finding the Moments That You’re Thankful For

I became obsessed with the card game Hearts during my sophomore year of college. Simply put, if you have the least points when someone else reaches 100 points, you win the game. You do this by avoiding the hearts suit and the queen of spades. Each heart is one point and the mighty queen of spades is 13. However, if you end up with all of the hearts and the queen, you can shoot the moon, giving you zero points for that round and giving the other three players 26 each. And sometimes you shoot the moon after starting out with a hand that was destined to be a horrible round. 

November always rolls around and I get excited about Thanksgiving with family in addition to the other things I love about fall - the leaves, hiking, cool runs, coffee on the porch, football, you name it! But, more importantly, November is a time for me to reflect more closely on my year...what’s been good, what’s been bad, and what goals do I have for myself now? It’s almost laughable to say that in 2020, but I do have much to be thankful for. I think about how, almost five years ago, I was just starting to get the hang of living life with ulcerative colitis (UC), but I was probably bitterly reflecting back on the hand I was dealt that year. 

I wish I could go back and comfort 23 year-old me and let her know things would get better. That the hand of mismatches wouldn’t seem so awful in a few years. That, in time, she’d be thankful for the support that encouraged her to do something with all of her frustration, anger and sadness when she was ready. Thankful for her own grit in deciding to share her own story to educate others and provide a safe space for anyone who didn’t feel seen or heard. And that was only the beginning - listening to patient after patient while on clinical rotations as a physician assistant (PA) student, truly hearing their stories reminded me of the providers that heard me when I had mild, easily dismissable symptoms, but ones that were way out of the ordinary for me. I’m now thankful that I’ve been an IBD patient myself and that I can use this experience to truly empathize with others going through a similar diagnosis one day.

I’ve also been so thankful to learn about my CCYAN co-fellows’ experiences; if you’ve read or watched any of our content this year, you know how amazing and inspiring they are. Their stories help me grow as an advocate, but also help me reflect on some of my darker memories of my IBD journey. For some, you may not remember because you were so young, and for others it may be all you’ve ever known. Yet, for another group, the line between pre- and post-diagnosis could be so sharp that it now demarcates two distinct periods of your life. I know some have shared that it is almost too painful to look back at certain memories during life with IBD, and that’s ok. However, I think the same people would agree with me that there’s still a light brightening that darkness. There’s still a new sprout growing from those ashes. The physical and mental pain we have all lived through serves as a stepping stone for strength. Just as we can look back and see the growth that came from the positive experiences we’ve had, we wouldn’t be where we are now without our painful experiences either. 

Lastly, I realize you may not be at a place where you are ready to reflect yet, but I hope you will get to a point one day where looking back on your IBD journey can be helpful and perhaps cathartic for you. I’ve learned so much in less than 5 years - about myself, about others, and from others - that I’ll carry with me for the rest of my life. I will be a more empathetic PA in my career because of it and will always strive to be an advocate for IBD patients. Even though I initially looked at the hand I was dealt and my heart sunk, I think I found my own way to shoot the moon. 

A Capital Mistake

Disclaimer: These are my views and observations, based on my experience with online Inflammatory Bowel Disease support groups in India.

 “It is a capital mistake to theorize before one has data. Insensibly one begins to twist facts to suit theories, instead of theories to suit facts.” 

~ Sir Arthur Conan Doyle, Sherlock Holmes

When I began my fellowship at CCYAN, I was a stranger to patient advocacy. I had a very vague idea of what the word meant. A couple of months later, I began a local initiative to explore the possibility of building a patient advocacy group for the Indian IBD (Inflammatory Bowel Disease) population. I started by imitating and trying to replicate the actions of existing advocacy groups in the US and the UK. However, it didn’t work. I soon realized that there is a larger fundamental problem that has to be addressed before I speak up for anything. It is the problem of patient education and health information. 

Patients in India are far less aware and informed about their condition than patients in the developed nations. A higher rate of illiteracy, language barriers, lack of counselors, and short consultation times are major reasons. While it may seem that this problem can be rectified easily by disseminating educational materials among patients in various ways, the reality is that the void created by a lack of information is not a void at all. My observation is that the void has been occupied by incorrect and unsubstantiated information that prejudice a patient’s mind when it comes to learning and accepting correct, evidence-based information about their condition. This “defect” in the knowledge that a patient has about their condition can lead to deterioration of their condition and, in some cases, prove to be fatal. 

The lack of patient education itself is a mechanism through which misinformation spreads. Existing patients with defective knowledge pass it on to the newly diagnosed. In the absence of rectifying sources/agents, such information can propagate and spread among groups of patients - very much like a virus. One of the places where things go “viral” is social media. The networks that connect us all are one of the pathways through which information that has no factual basis propagates.

In India, we have a small, but a fair number of Facebook and WhatsApp groups of patients suffering from Inflammatory Bowel Disease. Members of these groups exchange information daily on various topics - meds, diets, exercise, doctors, etc. I observed that there is a small subset of people, not always, but usually the creators of these groups that influence these discussions. This subset of people also acts as a source of “information” and “knowledge” for the other members.

In my experience, the majority of the discussions revolve around food and alternative treatments. Sporadically, there might be a discussion on the unaffordability of biologics, the struggle of young adults with the condition to get a job, study, or get into a relationship. However, these discussions are limited to a few comments, and that’s it. Several topics are not discussed out of shame. Erectile dysfunction because of IBD/surgery, anal dilation, rectovaginal fistulas, marital problems, reproductive issues - these are just some of the few issues that people seldom discuss in these forums. A support group is supposed to be a safe space, but these groups don’t feel like one to me. Nobody feels safe about opening up on problems that affect them very much because of fear of judgment and shame. The “advocates” too, rarely take any initiative to remove the stigma and taboo. We, the patients of India, with our ignorance, play a major role in keeping the taboo and stigma associated with IBD intact. The creators and moderators of such groups rarely take care to protect the newly diagnosed from misinformation. Many even float their own theories and post uncorroborated information. 

A year ago, the mother of a 31-year old patient called me. She was crying. She asked me to visit her son and counsel him. I received her call a couple of weeks after I had moved to Bangalore for my graduate studies. I was unsure, but I went to her home and visited her son. He was lying down on the bed, with a heavily bloated stomach and a hot pack on his abdomen. I started talking to him. He told me that he had been diagnosed with Crohn’s disease 7 years ago. Initially, he was prescribed Pentasa, which he took for two weeks only. He did not feel that he was responding to the drugs, and hence, he stopped taking the medication without consulting his doctor. He never visited his doctor again.

On the advice of “advocates” and “experts” on the internet, he began buying and consuming naturopathy products, special brands of water with a certain pH, and many other products that he claimed were alternative medicine. He was importing many of these items. When he ran out of money, he borrowed money from people on the pretence of treatment and bought the products. He hadn’t seen a GI in 6 years! He showed me the results of a 3-year-old imaging test. It mentioned internal fistulas. He could not even stand up. His old mother was caring for him. Sometimes, when he would be in a lot of pain, his relatives would take him to the emergency room where he would be advised immediate surgery. He had been refusing the option of surgery every time. I spent an hour trying to talk him into surgery and explaining that an ostomy is not the end of the world. He wouldn’t budge. I returned - disappointed and angry. A few days later, I received a message from him. It said that he did get a temporary ostomy, but he’ll be going back to naturopathy to save his colon. I wished him all the best and urged him to act responsibly. I never heard from him again.

This person was ready to die instead of accepting treatment from a doctor in a structured and safe manner. He spent his time lurking on the internet in such “support groups,” where he learned various expensive and ineffective remedies for his condition and went on to irrationally and blindly pursue them. He could have avoided the surgery, had these very “advocates” told him to get back to his doctor. 

Let me clarify here that I’m not speaking against the use of alternative therapies, some of which in recent times have been supported by some studies as a good supplementary treatment option. I object to disseminating unsubstantiated information in a manner that evades judgment, analysis, and scrutiny. Science, rational thinking, reason, is how humanity has come so far. It’s the gift we have—our capacity for reason and imagination. 

Modern medicine does not fully understand inflammatory bowel disease and many other conditions. This, in turn, has become an opportunity for some people to form and present their theories which are either completely unscientific or based on some science, but completely opaque to scrutiny. These baseless theories and cures are dangerous. Desperate patients often end up losing a significant amount of money, time, and health. Such theories and their preachers often evade accountability. 

We can only fight something well if we know what we’re fighting against well. I feel that most IBD patients in India are fighting blindly. The larger population of IBD patients in India faces a wide variety of problems compared to the handful of patients who have the luxury to engage in comfortable discussions in closed spaces on social media. Those problems are rarely discussed and confronted. 

Inflammatory Bowel Disease is a complex disease. Good communication is the first step towards helping patients navigate the physical and emotional roller coaster that comes with having an illness like IBD. We must develop a culture of sharing medically verified and factual information amongst ourselves. It’ll help create a community where everyone is aware and informed. The newly diagnosed, who are often confused, shall receive appropriate guidance and support. Only then can we begin to speak up as a collective voice for matters that can help improve the quality of life of Indian patients with Inflammatory Bowel Disease. 

That’s all from my side this month. Stay safe :)

The Difficulty of Finding a Treatment

For the ordinary individual, health is accepted as a given. It’s a part of life that mostly runs in the background like a minimized window on a computer. It’s always running, keeping us alive, and impacting our physical and mental states. Yet again, for most people, it’s rare to directly confront it on a minute to minute, or even second to second basis. Instead, it emerges at the forefront of life either by active and deliberate personal choice, or when something goes wrong. When a previously silent computer program running in the background becomes unresponsive, what was once insignificant becomes a major issue. To a greater extent, when that disruptive program causes our computer to crash and lose all of our work, it’s catastrophic. In a similar way, the typical individual goes to the doctor only on the occasions when their health is compromised by infection, injury, or other issues. Plus, when our health is stable and we are well, the changes we make, like starting a fitness regime, new diet, or implementing mindfulness strategies to our lifestyle, are done by choice.

However, when you live with a chronic illness, health management becomes significantly more complex. For one, chronically-ill patients often do not have the benefit of having a lifestyle defined by stable health. Chronic illness is by its very nature unpredictable. Diseases like Crohn's disease and ulcerative colitis revolve around periods of peaks and valleys - remission and flares. Once again, living with a chronic condition transforms the nature of managing health. The process of searching for, utilizing, and adjusting to a treatment for inflammatory bowel disease, or other chronic conditions, is one of trial and error. Unlike treating the common cold or a broken bone, the path to recovery is much less clear cut. Personally, I have tried various medications across a variety of different medication classes only to discover that they were not effective for treating my particular case of ulcerative colitis. It takes constant monitoring of your symptoms, and a commitment to embracing change to successfully navigate the healthcare system as a chronically ill patient.

It’s a difficult reality that many patients struggle through countless medications, clinics, and treatments before finding relief. Simply put, when you live with a chronic illness, your health is never certain. It’s unlike managing short-lived, common conditions, because there’s no clear timeline. Patients are forced to adjust to a new normal. This new reality is a reality where an individual must persist despite burnout, despite anxiety, and despite certainty. It involves significant sacrifices in one’s lifestyle, and even identity. Confronting health is no longer a special event or a choice, instead it’s a part of the daily routine. I believe this is part of why accepting illness is full of so many emotions, and why fatigue can easily take over. Everyday, patients are fighting a difficult, and often invisible, battle while living normal lives full of other responsibilities. The process, and the challenges, involved with finding and managing treatment do not make this balancing act any easier. Thus, it’s important to recognize the difficult, frustrating, and exhausting experience of patients worldwide. After all, despite illness, set-backs, and struggles, we persist to live lives as friends, artists, and advocates.

How My Mental Health Was Affected by IBD

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

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

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

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

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

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

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

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