ImproveCareNow Ostomy


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.


It was a journey of the senses...

My name is Heidi. I’m thrilled to share a bit of our journey…

When my husband & I traveled to India to adopt our kids, 15 plus years ago, it was a journey of senses: taste, smell, touch, sound, and sight. I have learned that parenting a child with a chronic illness is also a journey of the senses. When our 19-year-old son, Stephen, was diagnosed with ulcerative colitis the summer before his junior year of high school, we had no way of knowing where that journey would take us.


I value my quality of life over my fear of an imperfect body

Hi! My name is Becca, and I’m a junior in the School of Nursing at UNC Chapel Hill. I was diagnosed with ulcerative colitis at age fifteen, and my life has been tremendously impacted by it. I hope to use all that I have learned from my own journey to change the lives of pediatric patients in my dream job as a nurse in an IBD center.


From One Ostomate to Another, I Promise It Does Get Better

We have a problem. The problem is that people seem to be focused on the what of our ostomies and not on the why. Having an ostomy can drastically improve someone’s health; it can even save lives. For many of us ostomates, getting one is not a choice we have the liberty to make.


Top Ten LOOP Posts of 2018

LOOP is making an impression on the IBD community!

We enter December 2018 with 60 new posts, shared by 40 ImproveCareNow community members! And 27 people posted for the very first time in 2018. Posts covered topics like: IBD research, mental health, new PAC member intros, ICN event updates, what I wish you knew, and many honest accounts of life with IBD.

We are thankful for each and every one of these stories. Here are the top 10, most viewed, posts of 2018!


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