ImproveCareNow Ostomy


ICN Research Explained: Is it "all in the bag?" Multidisciplinary perspectives on ostomy surgery in pediatric IBD across the ImproveCareNow network

Pediatric inflammatory bowel disease (IBD) is a chronic illness with various treatments, including ostomy surgery. Ostomy‐related medical decision‐making (MDM) is complex for multidisciplinary healthcare professionals (HCPs). This study sought to understand national multidisciplinary HCPs' perceptions about pediatric IBD ostomy surgery in the United States.


Shared Decision-Making for IBD Surgery


Episode 21 of the imPACt Podcast - J-Pouches

Hi all, it's Hannah. I've written about ostomies and j-pouches here on LOOP before. Last June, I shared What I Wish I Knew About J-Pouch/Ostomy Takedown Surgery and it ended up being the second most-read post of 2021. So, this topic is pretty important to our community. And that's why we decided to make a podcast episode about it.


Top Ten LOOP posts of 2021

LOOP is an important venue for our community to keep #TalkingAboutIBD. It’s a place where #StoriesMatter - where they connect us, grow our confidence, validate our experiences, remind us we are not alone, and motivate us to continue improving together.

So far, in 2021, 70 stories have been shared #InTheLOOP. Patients, clinicians, parents, dietitians, researchers, and staff & leaders from across the ICN Community have written about IBD from their unique perspectives. They have covered topics ranging from support and advocacy to the importance of sharing openly and talking about IBD, from research and innovative projects to personal struggles, triumphs and hopes for the future.

Without further ado, here are the stories you read the most in 2021!


What I Wish I Knew About J-Pouch/Ostomy Takedown Surgery

Hello everyone, it’s Hannah! In early December of 2020, I had my ostomy reversal or takedown surgery to create my J-Pouch. I knew from talking with my doctor some of what to expect: waking up with lots of tubes, feeling tired and sore. But it was through reading articles about other people’s J-pouch experiences (those who just had surgery and those who have lived with their pouch for some time) that I was able to prepare myself for what to anticipate physically after surgery. Looking back now, I realize I’ve learned a lot, that there are things I wish I had known, and that I want to share what I’ve learned so others can know what to expect.  


IGNITE - Taking the journey together.

Heidi's #IgniteTalk is a powerful reminder that while IBD may be part of your life, you don't have to do it alone. There is value in connecting with others to give and receive support, in #TalkingAboutIBD because every story matters and has the power to change someone else's story, in offering what you have learned on your journey in the hope that it can help another person outsmart IBD.

Be inspired by Heidi's #IgniteTalk 🔥 


Ulcerative Colitis and My “New Normal”

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.


FAQ about the Shared Decision Making Toolkit for IBD Surgery

At April’s Live Online Community Conference (LOCC), Dayton Children’s introduced the Should I have IBD surgery? shared decision-making webtool and Dear Ostomy video. These resources are key components of an IBD Surgery Shared Decision-Making Toolkit that the Dayton team created using an ImproveCareNow (ICN) Innovation Fund award, made possible with support from the Clare Foundation. The toolkit generated a lot of excitement and questions, so project leaders, Dr. Kelly Sandberg and parent Shellie Doub took some time to answer to the most frequently asked questions.


Ulcerative colitis and my relationship with food

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.


Coronavirus Perspectives: Stay safe and reach out when you need it

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.


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