Did you miss the Boston Education Program?

Highlights from the Patient & Caregiver Education Conference

On April 1^st the New England Chapter held its 2023 Northeast Patient and Caregiver Education Conference in-person at the Sheraton Hotel in Needham, MA!

It was an amazing day of learning and connecting IBD patients and caregivers of all ages with the latest information and resources on Crohn’s disease and ulcerative colitis.

This event connected the IBD Community with resources and education from pediatric to adult ages. We heard from many medical experts on a variety of cutting edge topics including biologic drug treatment, nutrition, mental health, shared decision making, and more. Additionally, there was a patient panel discussion and expert Q&A panel.

What We Know About IBD

IBD is a chronic, progressive disease driven by a dysregulated immune system.

If things are left untreated, the progression of the disease worsens. The goal is to prevent this from happening. GI doctors utilize “treat-to-target” medical care for sustained disease remission. The objective is efficacy, safety, mode of administration, and patient compliance.

Crohn’s disease and ulcerative colitis are not just confined to the GI tract. Patients can also experience extra-intestinal symptoms of the diseases that sometimes don’t parallel disease activity. This can make management more challenging. When this occurs, doctors should test for other conditions that may simultaneously be “in play”. It’s essential to understand the full picture.

Exciting IBD Updates

Some great news that we learned is strides are being made toward “precision medication” which would personalize drug treatment for IBD patients. The explosion of new IBD medications is incredible over the last few years. And more research is being focused on perianal disease in Crohn’s disease. GI doctors are intervening with biologic therapy for IBD early on when there is disease progression. The goal is to optimize biologics to improve patient outcomes.

GI doctors only try to use steroids as a bridge for gap periods before other non-steroid medications begin working. In other words, steroids are no longer used as long-term maintenance drugs.

Nutrition Plays a Role in IBD

Nutrition has a role in inflammation and symptom management. Many questions regarding IBD and the role of diet/specific foods still remain, but it’s important to understand what is known thus far and support continued research.

Some ways that patients can assist in managing their symptoms and disease include:

• Using diet as support to help their medications work better.
• Making meal prep convenient, quick, easy, and healthy.
• Practicing mindful eating habits for better digestion.
• Working with a dietician to simplify and bring empowerment to eating.
• Incorporating their energy, protein, and nutrient needs.
• Utilizing personalized dietary tips and strategies.
• Discussing studied IBD diets with a dietician.
• Using the Gut Friendly Recipe online tool 
• Referencing the IBD Medication Guide

How IBD Impacts Mental Health

IBD can impact a patient’s mental health leading to feelings of depression, anxiety, fatigue, and eating phobias or disorders. That’s why it’s critical for patients, their families, and medical team to collaborate in order to reduce the person’s stress of having serious chronic illness.

Patients can help improve outcomes through a combination of diet, exercise, sleep hygiene, meditation, stress management, and work-life balance. Cognitive behavioral therapy with a licensed counselor can be beneficial. This form of “talk” therapy is concrete and present-focused. Certain antidepressants can help improve a patient’s ability to cope, improve their capacity to focus, fight fatigue, calm anxiety and depression, and help with the perception of pain (gut-brain connection). It’s vital to be open with your doctor regarding your mental health as part of managing IBD symptoms.

Shared Decision Making

Shared decision making between patients and their GI doctors is important because IBD care is becoming more complex. There are multiple treatment choices such as new agents, complementary therapy, and diets. We have never ending concepts such as “treat-to-target” and therapeutic drug monitoring. Doctors and patients have access to online information (and misinformation). In terms of treatment compliance, there could be health insurance related barriers. Shared decision is also important for the education about treatment side effects vs. uncontrolled disease.

Shared decision making is useful when the best treatment option is not clear (the best biologic to use for a new diagnosis of moderate to severe Crohn’s disease). Choices have consequences (the stakes are NOT minimal). The risk of surgery with no treatment vs. risk of medication side effects. Decision is preference sensitive. There may be several medication options, and decision may differ based on individual preferences (living with a stoma vs. J-pouch or single agent vs. combination therapy).

Patients can get involved by working with their GI doctor to make decisions, better understand their disease, and learn about available medication options (mechanism of action, side effect profile, and chance of response). Individuals should choose treatments that align with their care goals. Patients should not be afraid to speak up on their preferences and what’s important to them.

What Attendees Had to Say

Following the event, we had the opportunity to illicit feedback from a few attendees. We’re delighted to share what they had to say below.

We want to thank everyone who generously shared their valuable time to make this conference a huge success!