ImproveCareNow Patients


PAC Moment: IBD & How Treatments Impact Daily Life

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:


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:


Going with the Flow: Observations from an IBD Patient and Employee in Healthcare

On New Year’s Eve, my family has a tradition of writing our New Year’s resolutions on pieces of paper and then sharing them with each other amidst chuckles and teases. However, last year, we decided to do something a little different. “Let’s not choose a resolution,” we said. “And just go with the flow.” That concept could not have been more fitting or appropriate for 2020.


I was ready for boot camp when I got sick

My name is Madeline, and I am 18 years old. I currently attend technical community college but am transferring to a university in Virginia the fall of 2021. While in school I babysit/nanny part time. I was diagnosed with Crohn's disease earlier this year and I am excited to join the PAC. One thing most people don't know about me is that I love to sing.


To cope with Crohn's disease, I choreograph South Asian dances.

My name is Rhea - I'm 17 years old and currently a senior in high school. I was diagnosed with Crohn's disease when I was 16 and will be starting Humira soon. One interesting thing about me is that I absolutely love children. I want to study pediatrics in the future!


Dealing with COVID isolation as a high risk patient

 

As a high-risk graduate student who's been remote since March, I'm no stranger to the COVID isolation fatigue that many of us have been experiencing. It’s been a challenge to work, attend classes, take care of my health, and balance daily life without the usual in-person interactions I’m used to. The days can feel like a blur when we do everything from home - setting boundaries and creating some semblance of ‘normalcy’ has been tricky, to say the least.

A few of the things I’ve noticed help me cope right now:


It feels like we've really come full circle

Something that I don’t think a lot of people know is that I recruited Catalina Berenblum (Cat) to join the Patient Advisory Council (PAC), years ago. And now that she’s on-boarded me as the PAC's new Co-Chair, it feels like we’ve really come full circle. If I had known then, what I know now, it would have been an interesting sight to see: a high school freshman leading an orientation call to onboard a future PAC Co-Chair and eventual med student. Obviously, I didn’t know that Cat would become either of those things when I first picked up the phone, but I did expect great things from her right away. From our first conversation, I was sure Cat was going to do something amazing: she became an instant role model to me. That awe I felt was well-founded.


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