Key Takeaways from IBD Insider 2022 – Patient Updates from the Crohn’s & Colitis Congress®

Tina at Crohn's & Colitis Congress 2020

The third annual IBD Insider was, as always, a great culmination of the events from the 2022 Crohn’s & Colitis Congress®. As patients, we often have many questions about what goes on at these medical conferences and how to understand the research in bite-sized, digestible pieces (yes, pun intended). IBD Insider does just that by bringing to us the newest research updates in IBD for us to stay abreast of the latest and greatest, but also to enable us to make the best shared decisions with our physicians in our care.


Jordan Wilson, followed by Jose Torres, two ulcerative colitis and j-pouch patients kicked off IBD Insider and provided their patient insights on all the topics discussed throughout the session. The main topics for discussion at IBD Insider included Precision Medicine, Soup to Nuts: Diet & Nutrition in IBD and Technology in IBD Care. 

Precision Medicine

The first presentation broke down what precision medicine is and why it is so important to us as patients. Precision medicine, as defined by Torres, is “finding the right treatment at the right time for the right patient,” which Eugene Yen, MD, MBA, FACG, indeed corroborated by saying that it’s vital to tailor treatment towards an individual’s presentation of disease: “IBD is diverse, no one size fits all.” Dr. Yen went on to explain that precision medicine isn’t just about tailoring medication use but it also offers the potential to predict what kind of disease a patient will have. So, if a patient is more likely to have aggressive disease and possibly need surgery down the line, researchers are working on understanding what can be done now to prevent those outcomes.


The third piece of precision medicine is monitoring patients, especially those who fall into the more severe categories, in order to optimize dosing and ensure that outcomes don’t worsen. Monitoring disease typically includes checking blood inflammation markers and fecal levels of inflammation in addition to conducting imaging studies and colonoscopies.


So how do we treat the variations of disease in individuals? And how do doctors come up with personalized treatment plans? Jennifer Dotson, MD, MPH went on to share how certain medications are used for ulcerative colitis while others are used for Crohn’s disease, and some are used to treat both. Certain medications are shown to have better results in specific complications of Crohn’s, for instance, perianal fistulizing disease. As such, doctors often take all of these factors into consideration and use research and medication approvals to guide their decisions about a patient’s care.


To add to the precision medicine conversation, there were questions from viewers around therapeutic drug monitoring (TDM) and treating to target (TTT). How do TDM and TTT help manage our care better? TDM is the practice of measuring the levels of the drug in the body and antibody formation while on a particular medication. Doctors know what the different levels mean and what a good target dose is based on a patient’s presentation of disease. TTT works to optimize dosing in order to treat IBD to a target of endoscopic or histologic remission.


TDM and TTT help proactively monitor for disease activity and ensure doses of medicines are being changed and really optimized to ensure the best patient outcomes. And if that doesn’t work, a medication may be changed or added on to the current combination of medications. Antibody testing helps doctors decide whether the body is resisting the medication and if the medication needs to be changed if there is high antibody formation against the drug.


In the pediatric population, Dr. Dotson went on to share that there are additional aspects to consider when providing care. This includes the fact that fewer medications are approved for children with IBD versus the adult population. Fewer approved medications can be a limiting factor when it comes to treatment, according to Dr. Dotson. Decisions also need to be made around injections/infusions versus oral pills/capsules. Some pediatric patients may be afraid of needles and working with those fears and considering patient preference is also important as infusions may take away time from school and extracurricular activities.


The other aspect to note is that sometimes pediatric patients are unable to swallow pills and need to work with a psychologist to facilitate the incorporation of daily medications. Alternatives can sometimes include crushing pills and opening up capsules and mixing into food. Additional considerations may include whether a medication is associated with birth defects or a potential but rare risk of cancer. These are things that would be worth discussing with our physicians to make sure our concerns and personal beliefs and values are considered in the shared decision-making process.


Donna White-Barnes, a patient support group leader & parent of a 9-year-old boy with Crohn’s, shared her personal story, which aligned with Dr. Dotson’s points. Her son also didn’t know how to swallow pills when he was diagnosed, and she has had to find various ways to get the medication into his body. She and her son worked together to keep a journal of what medications are helping him and what side effects he experiences, if any. As a parent, she always pays attention to every detail and escalates any patterns that appear off to her. Keeping journals and having conversations with children about their IBD is a great way for parents to help their child become more independent and more mindful of how to manage their disease themselves as they grow up.


Dr. Dotson also shared other aspects of precision medicine, including whether race or ethnicity can be considered with regard to treatment options in IBD. She mentioned that genetic testing and genetic mutations could lead to some clues on this. In practice now are tests for TPMT on type of dosing to use in thiopurines and MUDT15, a gene mutation that increases the risk of dropping blood count, thereby suppressing bone marrow. There is a higher risk of these in patients of Asian and Hispanic descent and testing for these indications paves the way for tailoring medications based on race.


Another area of additional research is the microbiome and how that can be altered as a potential treatment option for IBD. One question related to the microbiome came in about fecal microbiota transplant (FMT) in the treatment of IBD. Dr. Dotson here shared that FMT has conclusive data around treating C. difficile infection, but the verdict is still out for IBD. While there may be some promise, there are issues around where the samples come from, how clean they are, what the standards are for using them in IBD and how often FMT needs to be done and repeated for optimal effect.


IBD Insider Precision Medicine Key Takeaways


Soup to Nuts: Diet & Nutrition in IBD

Crohn’s disease patient and University of Virginia student Macy Stahl, along with Brittany Roman-Green, RD, led the second session of IBD Insider. They emphasized the point that “diet does matter in IBD” throughout her presentation around diet and nutrition aspects of living with IBD.


Though no singular diet has been proven to cure IBD, diet remains important because there are dietary associations observed and validated by recent studies. For instance, consumption of high amounts of animal protein and reduced amounts of fruit and vegetables along with diets high in processed foods are associated with development of IBD, per Roman-Green. Additionally, patients living with ulcerative colitis that consume red meat 5 or more times a week are more likely to have an aggressive disease pattern. On the other hand, diets high in plant-based food and omega 3s are linked with improved inflammatory biomarkers, according to data presented during the program.


So, diet does truly play a part and can be a successful adjunctive therapy, particularly with the use of exclusive enteral nutrition (EEN) supplements. These supplements have been shown to induce remission in pediatric Crohn’s disease. When used prior to surgery, EEN has also shown to improve post-op outcomes and reduce complications.


So how do we improve our nutritional status and the state of our microbiome? Per Roman-Green, dietary fiber and diversity of plant-based food can really help on this end. It may be worth reducing a bit of the red meat by introducing tofu and legumes into the diet but it’s important not to fall into the trap of restrictive eating as that can lead to food fears and malnutrition.


Kelly Issokson, RD, discussed malnutrition extensively at the 2022 Crohn’s & Colitis Congress®. During IBD Insider, Roman-Green reviewed various points from Issokson’s talk for us to know about malnutrition. Given that up to 85% of IBD patients in the hospital may be malnourished, Roman-Green implored that all patients be screened using the Malnutrition Universal Screening Tool. By bringing in an IBD-focused registered dietitian to help care for the patient, clinicians can work to really improve disease outcomes.


Diet and nutrition can also impact mental health and affect a patient’s ability to eat. Many patients have developed food fears especially while living with a condition like IBD. According to Dr. Tiffany Taft’s talk on Avoidant Restrictive Food Intake Disorder (ARFID), also known as post traumatic stress around food consumption, up to 24% of patients may have eating disorders and up to 93% may have disordered eating patterns due to IBD.


Disordered eating patterns have marked interference with mental health and negatively impact diet in IBD, per Roman-Green. Cultural eating patterns can contribute to this; blaming ourselves for diet causing our disease can often burden a patient for “doing this to themselves,” which simply isn’t true. Per Roman-Green, there are many factors that contribute to the development of IBD, not just diet. Working with a GI psychologist and registered dietitian can help manage fears around foods and begin reintroduction of foods in a non-traumatic way.


To provide the patient/caregiver perspective, Donna White-Barnes answered important questions around navigating diet and nutrition for her son. In response to how to help children with IBD develop healthy eating habits, White-Barnes shared that it was very difficult for her to manage her son’s diet and she found the best way to do so was by using a food journal. He would eat certain foods and snacks and he would write down how he felt after each food. In this way, she got him more involved and empowered in his own care by understanding how each food made him feel. And that’s how she felt he could also understand how to keep his symptoms at bay by monitoring his diet.


White-Barnes went on to say that over the years, she has found many resources to help her child eat. From the Crohn’s & Colitis Foundation website to other websites with all sorts of recipes, she found meals that her child would feel excited to eat.


When it came to traveling, White-Barnes shared that she would plan ahead with regard to food:

•    Pack snacks that she and her child can eat
•    Fill the suitcase with liquid nutrition for hydration 
•    Stop at grocery stores and/or go into town to pick up a variety of things to eat
•    Don’t depend on going to the airport and getting appropriate snacks


As a Crohn’s patient myself, I would personally add (to this list) researching compatible restaurant options beforehand, making phone calls and asking if food alterations are possible, so the whole family can dine out and enjoy their meal.


Even though it can feel extremely daunting to plan ahead, there is no choice but to prepare in advance so that travel can be less stressful and less anxiety-provoking. With parents preparing in advance of travel, for instance, they will also teach and empower their child to help out and to prepare adequately for when they go off to college.


Roman-Green wrapped up the Diet & Nutrition part of the program by sharing Key Takeaways from the Soup to Nuts session at Crohn’s & Colitis Congress. See the following slide for more details:


IBD Insider Diet Key Takeaways part 1
IBD Insider Diet Key Takeaways part 2


Technology in IBD Care

Technology has really changed medical care in recent years. Especially with the pandemic upon us, telemedicine has become a mainstay. Dr. Sandra Quezada explained how telemedicine can and will become adjunctive to in-person visits to create a hybrid model of care as the way forward. In addition to that, Dr. Quezada shared that more digital app technologies have been developed to help organize patient care. From apps that keep track of diet, bowel movements, symptoms, etc., to “smart” toilets monitoring essential real-time data to transmit to our doctors, health management has really changed and allowed doctors to understand more of a patient’s life in the moment.


Additionally, Dr. Quezada shared how much artificial intelligence (AI) has assisted endoscopists in standardizing assessments of a patient’s disease. This has traditionally been a very individual assessment, Dr. Quezada explained, one where an IBD expert has had to evaluate with their very own eyes and experience what a patient’s inflammatory activity looks like. With the advent of AI in this space, AI programs can “look” at thousands of endoscopic images and biopsy results to evaluate and standardize inflammatory activity, making results more consistent and the evaluation process more efficient. For example, in colorectal cancer screenings, AI can highlight which lesions look suspicious for endoscopists to go back and look at closely again, otherwise lesions can be missed.


Dr. Quezada also went on to share that in addition to endoscopies, there have been breakthroughs in the surgical space. Robotic-assisted surgery  allows surgeons to make smaller incisions and maneuver into tight spots to perform fine-tuned detailed work with greater dexterity. This, in turn, helps to reduce the risk of complications and adhesions.


But in all of these new digital solutions, where do we as patients fall? Dr. Quezada emphasizes the need for patient-centric care rather than what’s better for the system. Patients therefore need to have knowledge to be active partners in their care in order to make informed decisions. This goes alongside technology as well; there is unfortunately a digital divide for patients of lower socioeconomic status around the U.S., with greater access to those who can afford it. Moreover, clinical algorithms may be race-based and clinicians need to recognize that uniform processes may not be able to be applied to patients of certain backgrounds. We need to be mindful, Dr. Quezada said, and not build more inequities or bias into the medical system in the future.


IBD Insider Technology Key Takeaways


In summary

In closing, Jordan Wilson brought together all the points from IBD Insider and gave us all some great advice about learning to ask the tough questions and being our own best advocate. As a patient advocate myself, I would have to agree – we need all the education we can get and I truly appreciate the Crohn’s & Colitis Foundation and American Gastroenterological Association putting together this event to keep us abreast of the latest and greatest in terms of IBD. Being armed and empowered with credible information from both clinicians and patients is the way to move forward and advocate for ourselves or on behalf of our children.


To watch the full IBD Insider program, click here