AIBD 2020: Hot Topics for IBD Patients

This year’s Advances in IBD conference was my first time attending and it sure as heck did not disappoint! AIBD may have been virtual due to the ongoing pandemic but it was nevertheless very well-organized and informative. The sessions shared many important studies and topics for us to learn and know all about.

As a patient advocate who was sharing information across platforms, there were several topics buzzing in the IBD patient community around the world. Below are my picks for the top highlights from AIBD for IBD patients:

COVID-19 & IBD

According to the SECURE-IBD registry, IBD patients are not necessarily at greater risk of contracting COVID-19. Rates of contraction appear in line with the rest of the population; however, if contracted, some may experience severe symptoms, including but not limited to respiratory symptoms and gastrointestinal effects, such as diarrhea, nausea and vomiting. As with the rest of the population, older age, comorbidities, steroids, thiopurines in addition to more severe IBD activity increase risk of worse outcomes.

In hearing from Dr. Maria Abreu (Director, Crohn’s and Colitis Center; Professor of Medicine, Microbiology and Immunology at University of Miami Miller School of Medicine; Chair, IOIBD), it’s really the medications that need to be considered to determine risks around outcomes with the virus. Steroids, particularly high-dose prednisone, have the worst outcomes followed by 5-ASAs (likely because patients on mesalamines may not be in remission, further studies needed). As a result, many gastroenterologists are using Budesonide at this time or initiating patients with moderate-to-severe IBD on biologics, particularly anti-TNF agents, which are showing some promise in terms of being protective against the cytokine storm caused by COVID-19. Thiopurines and the combination therapy (thiopurines with biologics) have worse outcomes than using the anti-TNF agents alone.

One of the highlights of this discussion was the COVID-19 vaccine. According to Dr. Miguel Regueiro (Professor of Medicine, Chair of Gastroenterology, Hepatology & Nutrition at Cleveland Clinic), he along with the rest of the gastroenterology community are recommending the vaccine to IBD patients at this time. It is not a live vaccine so it is not contraindicated with biologic use. The vaccine utilizes a novel mRNA technology, which works against the “spike protein” on the outer surface of SARS CoV2. The vaccine prepares the immune system to fight the virus but does not give anyone the SARS-CoV2 virus.

The bottom line is that the vaccine appears to be safe at this time for patient use. Dr. Regueiro also emphasized that patients can receive this vaccine without withholding medications essential to their IBD care. And while some have reported flu-like symptoms in clinical trials, that does not at all mean the patient has contracted COVID-19.

**If you have been diagnosed with the COVID-19 virus, please remember to report your symptoms to your gastroenterologist to be reported into the SECURE-IBD registry for researchers to learn, understand and report on the risks to IBD patients all over the world.

Pregnancy & IBD (PIANO Registry)

One of the greatest highlights of AIBD 2020 was hearing Dr. Uma Mahadevan (Professor of Medicine, Co-Director, Crohn’s & Colitis Center at UCSF, Chair of IBDParenthoodProject.org) speak about the PIANO Registry data results. The PIANO registry is a 1700 patient prospective registry of pregnancy outcomes in women with IBD. Dr. Mahadevan’s presentation included discussion around the following:

The mother should be in remission to have better outcomes with pregnancy (e.g. fewer complications). Healthy mother = healthy baby.
Active IBD before and during pregnancy associated with increased prematurity, SGA (small for gestational age) & stillbirths
Patients with ulcerative colitis are more likely to flare during pregnancy than those with Crohn’s disease. This may be because patients with UC may not be on biologics to the same extent and their disease may not thus be as robustly managed. (i.e., they may not be in remission prior to conception, further studies needed).

Dr. Mahadevan’s key highlights around the use of medications during pregnancy include the following:

Biologics are generally safe to use during pregnancy and postpartum to keep the mother healthy. There is no indication that infants develop more infections from biologics.
Stopping an anti-TNF agent has been shown to increase maternal disease.
Exposure to Ustekinumab appears to be low risk during pregnancy.
CONCEIVE study (involving Vedolizumab) showed that patients on VDZ had more disease activity during conception but generally had very comparable results to anti-TNF agents in pregnancy.
More data overall on Vedolizumab, Ustekinumab and Tofacitinib needed.

With regard to COVID-19 and pregnancy outcomes in IBD patients, Dr. Mahadevan shared a few thoughts:

Pregnant women are at increased risk of COVID-related adverse outcomes.
Best for women to continue their pregnancy-appropriate IBD therapy to maintain remission as increased disease activity may lead to worse COVID-19 outcomes.
Best to increase masking precautions and social distancing during pregnancy.

As always, Dr. Mahadevan did emphasize that delivery should be coordinated with the patient’s OB/GYN, gastroenterologist, colorectal surgeon (if applicable) and maternal fetal medicine. A few important points to consider here:

Women with active perianal disease should have a cesarean section. Rectovaginal fistulas are tricky and the patient and her gastroenterologist should make a shared decision with regard to how to handle her delivery. Colorectal surgery should be involved and possibly present during delivery.
Women with an ileoanal J-pouch should consider cesarean section. Vaginal delivery may be possible but needs to be a shared decision amongst gastroenterologist, colorectal surgeon and patient. The thing to keep in mind here is preserving sphincter function and continence, which could be compromised during vaginal delivery.

As far as breastfeeding goes, low levels of 5-ASAs and biologics have been detected in breast milk. As for thiopurines, those are most detectable in breast milk within 4 hours of taking the medication. Keep in mind that breastfeeding while on biologics does not stunt infant growth, change developmental milestones or increase infection rates in babies.

Regarding immunizations, maternal use of immunomodulators does not affect vaccine response. It is generally recommended that moms to hold off for 6 months in giving the baby livevaccines.

Dr. Mahadevan also stated that cannabis is generally a no for women with IBD who are pregnant. Observational data have demonstrated that cannabis use was associated with low birth weight and preterm delivery. In addition, cannabis appeared to last in breast milk for 6 weeks after consumption and could have an impact in brain function development in babies during this period.

As always, please refer to the American Gastroenterological Association’s pregnancy in IBD resource, IBD Parenthood Project, for additional information.

Complementary & Alternative Medicine (CAM)

Dr. Peter Higgins (Professor of Medicine, Director, IBD Program at University of Michigan)had yet another captivating presentation for IBD patients to be in the know about, which highlighted the use of complementary & alternative medicine (CAM) in IBD.

His underlying theme was that adjunctive therapies (as shown in the slide above) are often recommended and can be useful. The main barrier is usually cost and lack of insurance coverage. Even though there could be risks associated, they generally tend to be low.

Dr. Higgins’ main concern, however, was the use of evidence-free remedies, particularly cannabis and herbal remedies (e.g., Ayurveda, Chinese medicine, etc.). The issue here is these are rarely pure molecules, often have lead or some additives in them and can do real harm to the patient’s body. It’s important to note that these remedies don’t have evidence-based research attached to them, including robust randomized clinical trials that can verify their ability to actually treat the underlying inflammation in IBD.

With regard to cannabis, the issue here is that cannabis may improve symptoms but does not control inflammation. This means that cannabis may mask abdominal pain and discomfort so well that Crohn’s patients may feel asymptomatic and not realize there is unbridled inflammation that needs to be kept tabs upon routinely. As such, in Crohn’s, cannabis is associated with poor outcomes and may result in surgery if used extensively to mask abdominal pain and potential complications.

The Use of Virtual Reality in IBD Care

One of the most visually enticing presentations of AIBD 2020 was Dr. Brennan Spiegel’s talk on the use of virtual reality (VR) in IBD care. In his presentation, Dr. Spiegel (Professor of Medicine at UCLA, Director of Health Services Research at Cedars-Sinai Health System) explained how virtual reality is a tool that can be used to modify patient perceptions around uncomfortable and even painful circumstances. When used to reframe unhealthy perceptions, virtual reality can become a radical new therapy to improve patient quality of life by decreasing pain, reducing opioid dependence and boosting mental health.

So how does VR work? In randomized clinical trials using virtual reality during labor and in episodes of great pain in hospitalized patients, Dr. Spiegel explained that the findings showed that pain-related brain activity was reduced. He believes this technology is something worth considering for use in IBD patients, who often suffer from great abdominal/rectal pain and cramping in addition to significant psychological distress from disease flare-ups, surgery and loss of careers and social life.

Additionally, there were many other topics discussed at AIBD 2020. A few takeaway points for us IBD patients to consider are laid out below:

De-escalation of IBD therapy: According to Dr. Stephen Hanauer (Professor of Medicine, Director, Digestive Health Center at Northwestern University Feinberg School of Medicine), even after the deepest remission, Crohn’s can recur after surgery or from de-escalation of therapy. If your gastroenterologist is looking to de-escalate your biologic therapy, please have an open discussion about risk of relapse. Please make sure this is a shared and informed decision and that you continue to have regular scans and colonoscopies to monitor disease activity.

Post-operative complications & recurrence of Crohn’s disease: There may be post-operative complications that should be brought to the attention of your gastroenterologist. If you develop recurrence of your Crohn’s (e.g., any extraintestinal manifestations), including on your ostomy site, such as erythema nodosum, pyoderma gangrenosum, fistulas, hidradenitis suppurativa, etc., it may be time for escalation of medical therapies (e.g., biologics, etc.). Please contact your colorectal surgeon, gastroenterologist to coordinate care with a WOCN (stoma nurse) and dermatologist.

Precision Medicine: Dr. Maria Abreu discussed this topic at length and why we need personalized medicine in IBD:
- To determine who will develop more severe disease and how can it be addressed now to prevent complications and disability?
- To determine which therapies will work best for which patient?
- To determine which patients can be successfully de-escalated off therapy and still maintain remission?

One of the most important advancements made in the last year is the determination that the presence of the gene HLA-DQA1*05 is associated with IBD patients developing antibodies to anti-TNF agents (Infliximab and Adalimumab). Testing for this gene can allow gastroenterologists to decide which biological agent should be used and if it should be paired with an immunosuppressant for antibody prevention. All of this is novel and really depends on each patient’s genetic makeup.

Dietary Interventions: It’s important to work with your gastroenterologist and a GI dietitian to help manage your diet to see if it can allay symptoms. According to Dr. Peter Gibson (Professor of Medicine, Director of Gastroenterology at The Alfred & Monash University), there are 4 particular dietary considerations that may have use in IBD:
- Working on improving nutritional status to improve overall quality of life and response to IBD medication therapy.
- Exclusive enteral nutrition (EEN) has positive results specifically in Crohn’s disease in terms of (1) reduction of inflammation, (2) mucosal healing and (3) improvement of patient nutritional status prior to surgery.
- Working to help control GI symptoms particularly when IBD may be well-controlled and IBS may be acting up.
- If there is evidence of dietary changes being associated with the development of IBD, are there alterations we can make to prevent disease in future generations? More to come on this…

All in all, AIBD 2020 was a fantastic experience and I was really able to learn so much! A special thank you to the co-chairs, Drs. Miguel Regueiro, Millie Long and Stephen Hanauer for organizing and bringing such an important conference to us and for allowing me to be a part of it. And a special thank you to fellow patient advocate, Jessica Caron, for sharing patient perspectives on many important topics from COVID-19 and IBD to pregnancy in IBD and the role of the RN in IBD care.

As we close out another informative AIBD conference, Dr. Regueiro leaves us with some thoughts for the future: “We plan to increase our patient involvement at future AIBD conferences. The patient voice needs to be heard and part of healthcare professional education. We learn from each other and patient-centered care is all about teamwork.”

Looking forward to next year and making great strides in advancing IBD research all together!

As always, I love hearing from you all. Feel free to drop comments and share this article if you found it useful!