ImproveCareNow Patient_experience


IGNITE - This too shall pass.

As a public speaker, it can be challenging to embody positivity while talking about such difficult experiences. Leela struck this balance in her Ignite Talk at our Fall 2024 Community Conference; she led us into the darkest moments of her IBD story and then turned on the light. During her recovery from abdominal surgery, when the stress, fear, and pain was palpable and all she wanted to do was cry but couldn't because "if I did, my stomach would feel like lava," Leela's Mom never gave up on her or left her side. In a pivotal moment involving a 🐞 ladybug, Leela felt her Dad's words "This too shall pass..." spring into her mind. Those comforting words woke her up and she was hit with the realization that this was her defining moment; "a moment in your life that you look back on and it fills you with motivation to keep moving forward - a time in your life where you went...yeah, I did that! 

Be inspired by Leela's #IgniteTalk 🔥


Olivia's journey with the SCD + some of her favorite recipes

Recently, the team at UVM Children's Hospital noticed that food and diet regularly came up during their monthly UVM Pediatric IBD Advisory meetings. Members discussed their personal experiences and learned from each other about how some respond differently to the same foods, how to be aware of food triggers, and what go-to comfort foods people enjoyed while flaring. Recognizing the power of learning from each other and wanting to reach more members of their IBD community, the team asked Olivia if she would share her story about using the Specific Carbohydrate Diet to help manage her IBD symptoms.

Get #InTheLOOP with Olivia's story 💚💙


PAC Moment - Acing Injections!

Injections are a common way to receive medication for IBD patients. It can be a nerve-wracking experience, so PAC experts have compiled a list of tips and tricks - for patients, by patients - that can help make your injections go as smoothly as possible!


Crohn’s and anxiety - it’s an endless battle.

Hi, my name is Emily and I was diagnosed with Crohn’s disease in December of 2023. Something interesting about me is that I met my idol, the voice actor of Ahsoka Tano from Star Wars, Ashley Eckstein. I joined the PAC in February 2024.


Making nutrition a tasty, accessible, and nourishing option for all families living with IBD - the story of EATS for IBD

My name is Maddie and I was diagnosed with Crohn’s Disease when I was 13 years old. I’ve been a part of the ICN network for almost 8 years, and I transitioned from my role as PAC Co-Chair a year ago. Now I have the opportunity to share my passion project with the ICN community! Introducing: EATS for IBD™


IGNITE - The impact and importance of listening

Kera has been seeking information and making tough decisions from a young age. She was just 10 years old when she, with support from her Mom and Dad, made the choice to use nutritional therapy to treat and manage Crohn's disease after surgery. Her path to emergent surgery, and ultimately her diagnosis, was long and paved with painful symptoms and emotional trauma. Some adults dismissed her pain as "normal" or even lies. In her deeply honest #ignitetalk, Kera reminded us that life is full of inflection points...the moment a stomach bug morphed into chronic pain, the moment her pain was validated and she learned she had Crohn's, the moment her care providers really listened and answered her questions, the moment she realized that succeeding at nutritional therapy helped her physical health but exacted a huge toll on her mental health, the moment it became clear her issues with body image and eating were not safe or healthy, the moment she discovered the Patient Advisory Council and people who she didn't have to 'downplay her trauma around', the moment (which came just before she took the podium at #ICNCC23F) when her PAC co-chair, Shira, told her that she is allowed to take up space.

If reading about or listening to real experiences with eating disorders and/or body dysmorphia does not serve you, please protect your own mental well-being by skipping this post and video.

Be inspired by Kera's #IgniteTalk 🔥


Medication Roller Coaster

I sit staring at what feels like a mountain of pills, my pillbox barely shutting. I just wish I could be a normal college kid. Taking daily medications sounds so simple and easy, but it’s often one of my biggest challenges. Trying to keep up with medications and even appointments gets very exhausting, especially since I’ve had to do these things from a very young age. I know nothing more than a life filled with pills and appointments. 


IGNITE - Community and having a relationship with patients is important

Imagine being diagnosed with a chronic illness in the midst of a global pandemic and lockdown. How does a young person develop resilience and thrive when facing incredible health challenges in isolation? How can they connect with people who understand, who can normalize IBD and offer support and validation about experiences that are still very stigmatized? Not only was Hannah able to develop resilience (on her own terms) and thrive (in the face of difficult surgeries and complications), she also found a community in ICN and the PAC and has grown into an incredible patient advocate. In her #ICNCC23S Ignite Talk, Hannah shares the story of her diagnosis, what resilience and community mean to her, how asking questions and getting to know patients can open the doors to more inclusive and whole-body care.

Be inspired by Hannah's #IgniteTalk 🔥


My new irritable friend

In November of 2021, I was diagnosed with IBS or irritable bowel syndrome. I had an uninvited, new irritable friend that became a part of my daily life, just like my IBD. Leading up to being diagnosed, I had been experiencing gut-wrenching belly pain, nausea with pain, and fluctuations between painful constipation and uncontrollable and very urgent soft stools. I knew something wasn’t right. I had experienced fluctuations of stool type from my IBD, but this time it was different. 


Living with IBD and a feeding tube doesn't define you!

Quote about Feeding Tube Awareness. "Your feeding tube doesn't define who you are, it doesn't make you any less beautiful. You are still the same person you were before the feeding tube."

February 6-10, 2023 is Feeding Tube Awareness Week! I think it’s very clever to have something like this because it seems like most people are ashamed or feel insecure when having a feeding tube; it shouldn’t be like that. A feeding tube isn’t an embarrassing thing to have. We should be grateful to have such a thing when we need it, so we don’t get even more sick.


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