I'm Lexi - a rising high school senior. In December 2019, I was having severe nausea, vomiting, and abdominal pain. The doctor at Urgent Care thought my gallbladder was the cause of my pain and suggested I go to the emergency room immediately to have it removed. At the ER, after many tests, they determined it was not my gallbladder but could not figure out the cause of my pain. I was referred to a pediatric gastroenterologist.

Recently, I sent my Grandfather from out of town a surprise package. I took the time to search through all of the wonderful LOOP posts made by PAC members and pulled out all the posts I have written. I compiled them into a word document and attached the pictures as well. I made the font decently big and separated each article to make it easy to read. I printed a copy, wrote my Grandpa a note and sent the package on its way to Pennsylvania.

My name is Benjamin and I am a rising senior in high school. I was diagnosed with Crohn's disease when I was 10 and a half. Since then, I have found joy in art, Boy Scouts, numerous sports, and theatre.

We believe in the power of storytelling to connect us, help us all teach and all learn, and to remind us we are not alone. We want to encourage you - whether you have experience with IBD already or are learning about it for the first time - to take a moment and experience life with these chronic illnesses through the stories of five of our community members 💚💙

From her home office, Catalina spoke clearly and with great conviction, delivering her narrative directly to…her computer screen. Many of us have become accustomed to hearing Ignite Talks delivered to a packed plenary room at our in-person Community Conferences – and the effect these personal stories have is often palpable. Though it was not the original plan, Cat’s words flowed from her location in North Carolina across hundreds and even thousands of miles, reaching ImproveCareNow community members as they joined our first-ever Live Online Community Conference from their homes and offices. While the distance between was indeed great – Cat’s words drew us in close and (as Ignite Talks tend to do) reignited the passion we all feel for the work of ImproveCareNow - of improving health and care for kids with IBD. And from across the miles, the effect of Cat's words were still palpable:

“Incredible Cat!! Words do not do justice to what you are conveying to all of us - the village of ICN!”

“Inspiring for us all! Makes you want to try even harder!”

“You are incredible Cat!!! Your strength and advocacy is inspiring!!! THANK YOU!!!”

“I'M CRYING”

“You remind us why it is so worth it to keep fighting and working. Thank you!”

“Cat gives me chills.”

*stands up and claps*

“Really beautiful. As a caregiver, I feel your passion and share your sense of purpose. Very well done.”

Experience Cat’s Ignite Talk:

My name is Leela, I’m in high school. My diagnosis with ulcerative colitis was a little chaotic. I didn't tell anyone that I was bleeding for about six months, so by the time the issue was brought up, I was severely anemic. I was officially diagnosed with UC the fall of my sophomore year (a little over a year ago). After having no success with medications, I went through surgery for an ostomy April 8, 2019, with the plan of ultimately getting a j-pouch. I lived with an ostomy bag for seven months, and have since undergone two more surgeries, my final one in November 2019, to have my ostomy reversed.

We believe everyone’s story matters and is important and can change someone else’s story. In the midst of the current global coronavirus pandemic it feels more important than ever to share our stories, experiences, knowledge and know-how widely, to stay connected virtually and to continue reminding each other - we are not alone!

Thanks to PAC (Patient Advisory Council) member, Quint for sharing his perspective!

My name is Jake and I’m a senior in high school. I was diagnosed with Crohn's disease in the fall of my junior year. One interesting thing about me is that one day I decided to take up running, so I signed up for the Atlanta marathon. After only a month of training I completed the marathon - this made me really fall in love with the sport!

We believe everyone’s story matters and is important and can change someone else’s story. In the midst of the current global coronavirus pandemic it feels more important than ever to share our stories, experiences, knowledge and know-how widely, to stay connected virtually and to continue reminding each other - we are not alone!

Thank you so much to PAC (Patient Advisory Council) member, Becky who shared her perspective on life with IBD in the time of coronavirus and the disease it causes – called COVID 19.

image credit: NIAID-RML

Many IBD patients and their families are concerned about the novel coronavirus (COVID-19) and the impact it may have on their lives, their care and their wellbeing. Please note: IBD patients and families seeking specific information about the novel coronavirus and their medical care are advised to communicate directly with their care team. While ImproveCareNow is not in the business of providing direct medical advice, we are in the business of connecting people, learning together and sharing information seamlessly. We'd like to share some information that may be useful to you: