LOOP Blog

IBD can feel lonely and isolating. It can really help to connect with and talk to other people who understand because they live with IBD too. Fionna shares what being part of the Patient Advisory Council (PAC) means to her and how it has influenced her IBD journey:

Makenna Martin is my name and I am looking forward to attending technical school in the fall of 2021. I love researching just about anything and everything when I have the time. Lately I have spent a lot of time researching the difference between TPN (Total Parenteral Nutrition) and Enteral feedings. They both give you what you need, just one goes through a vein and the other straight to the stomach. 

Hey, it’s Robbie! I’m a member of the Patient Advisory Council (PAC) and your host for Episode 1 of the imPACt podcast today. The PAC and I are beyond excited to share our first full episode of the imPACt podcast with you! Sharing the perspectives of patients and caregivers is our goal, and imPACt truly brings a new, modern twist on allowing others to listen to perspectives of those within the ICN community.

My name is Hannah, and I am a sophomore in high school. In August of 2020, I was diagnosed with ulcerative colitis. Within a couple weeks of that diagnosis, I had my colon removed. After that I had an ostomy for about four months before having my j-pouch surgery in December. One interesting thing that most people don't know about me is that I have moderate hearing loss in my right ear.

IBD treatment plans are as varied as the patients who live with and follow them. Vanessa shares her experience with IBD and how her treatments impact her daily life:

Here #InTheLOOP we have been honored to share hundreds of stories from people across our community. We believe strongly in the power of #TalkingAboutIBD and of stories to highlight the real voices, experiences, joys, frustrations, triumphs and struggles of patients who live with IBD every single day. Today, we are very excited to be able to share a whole new way for you to engage with the patient voice - to really hear their stories - by tuning into a brand new podcast by the Patient Advisory Council (PAC) called imPACt! In this podcast PAC members will be talking openly about IBD with a goal of raising awareness and inclusivity, and connecting with listeners, each other and podcast guests.

PAC member, Andi, once wrote: “I have learned that mental health is just as important as physical health.” Talking openly about the impacts IBD can have on mental health is important to shed light on how intertwined the two really are. Here’s Quint’s experience:

We are well past the first month of the new year, which has me reflecting on some of the challenges and transitions that ImproveCareNow faced as a network and community over the past year. Twenty-twenty is like no other year that I can remember. And while it presented us with many new obstacles as we struggled together to navigate a global pandemic, it also shone a light on inherent disparities and highlighted some of the opportunities waiting to be addressed in our systems. 

Dietary interventions, nutritional drinks, tube feeding, TPN, special or therapeutic diets – there are many ways to address nutrition as part of an IBD care plan. This is Maddie’s experience:

From diagnosis, to symptoms, to treatments, to (hopefully) remission - every person living with IBD has a unique experience with it. This is Rohit's: