ImproveCareNow Fionna_kopp


PAC Moment: Stress, self-care & school

PAC members weigh in on how they like to manage stress and take care of themselves leading up to school exams or the end of a semester. Here is what they said:


PAC Moment: What the PAC Means to Me

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:


Patient Advisory Council launches new "imPACt" podcast to connect and talk IBD

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 Moment: IBD & Mental Health

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:


PAC Moment: Relationship with Food

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:


PAC Moment: Experience with IBD

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


Patient Perspectives on Telehealth and In-Person Care in the Time of COVID-19

COVID-19 – the illness caused by the novel coronavirus (SARS-CoV-2) – has brought unprecedented challenges for both patients with IBD and their care providers. In this post, members of the Patient Advisory Council share perspectives on accessing telehealth and in-person care in the time of COVID-19, and recommendations for improving together.

We believe these perspectives are important for individuals with IBD to review and consider, because the quality of our care is directly tied to our long-term health and wellbeing. If we possibly have less effective care during a pandemic, it can have downstream effects on our health and our lives.


Top Ten LOOP Posts of 2019

LOOP is making impressions in the IBD community!

So far, in 2019, 50 stories have been posted to the blog by 40 ICN community members, including clinicians, researchers, coordinators, parents, patients, psychosocial professionals, and ICN staff & leaders. While the perspectives and the topics vary – as you can see in the tag cloud below – one of the common threads is that they are written by real people, talking about real life with IBD.

We are thankful for each and every one of these stories and hope that by sharing them we continue to do our part to raise awareness of these often-invisible illnesses and help encourage more people to get connected and talk about IBD.

Without further ado, here are the top 10 most read posts of 2019!


I love my perseverance

I am a second-year engineering major. I tend to be a very academically driven person with high expectations of myself. I love my perseverance, but sometimes my own determination to achieve my goals is my biggest stressor. In my mind I set goals for myself constantly. And naturally when I don’t meet my goals, I am disappointed.

These habits manifest in many facets of my life, but particularly in my academic life. I set goals for tests and grades and expectations for interactions. When I don’t do as well as I would like, it can be rough, and I end up stressed out.


Becoming a Responsible Young Adult

I’m Fionna and I am 18 years old. I am a freshman in college, thinking about studying engineering, but haven’t decided yet...so that may change! I was diagnosed with ulcerative colitis when I was five and primary sclerosing cholangitis (liver complication) when I was seven.

Last year I started fencing at school. I love it! Sabre is my favorite.


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