ImproveCareNow Ostomy


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!


Patient's Intuition

Last month, I had the most entertaining ileoscopy in history (which is saying a lot since I was sedated for most of it). Let me give you the background on this:


The #AerieREAL Campaign

As a young woman who has had an ostomy for nearly five years, I know the struggle of not feeling completely confident and beautiful. Ostomy or not, a majority of teenagers and young adults struggle with confidence and body image. That’s why I was so excited to see Aerie, a company that has a reputation for not touching up their photos and for representing women of all shapes, sizes, and skin colors, take their #AerieREAL campaign to the next level. In their latest set of images, Aerie is representing women with various disabilities and illnesses, including a beautiful woman with an insulin pump, a stunning woman in a wheelchair, a graceful woman with Down Syndrome, and many many more wonderful ladies.


A Guide to Gutsy Living

One of the greatest gifts I have ever received is a small pin that’s likely worth about $5. I imagine that most people who look at the pin, proudly affixed to the collar of the lab coat I wear during clinical placements, assume it’s a red flower. But it’s not a pin of a red flower. It’s a pin of a stoma.


We all have an escape. Mine is theater.

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I’m a therapist and the lead suspect of a murder. Well, I play a character that is!

I’ve always loved theater. I’ve done 12 performances, am on my school’s improv team, and have taken drama in high school every semester. One of my favorite things about theater is that you can act as anyone. It makes me feel better to play characters who have more problems than I do, and that’s saying something. Which is one reason why I’m so excited to perform my soap opera!


I'm a fighter.

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My name is Chloe and I’m 18 years old. I graduated high school in June, and currently work as a cashier. I was diagnosed with UC at age 13.


A few symptoms to surgery...in three days

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I read online somewhere that the best way to describe Crohn’s disease is that it feels like slashing open your intestines with a chainsaw. I can really relate to that post. You see, I’ve had refractory Crohn’s for eight years, which means my disease doesn’t respond to anti-TNF medications, and that significantly limits my treatment options. And that leads me to my most recent Crohn’s adventure. It all started on a Thursday in late February. After trying and failing Entyvio, my doctor was running out of ideas. He recommended I go to another IBD clinic with more experience treating complex cases like mine - to see if they had any ideas about what I could try next.


Project WOW 2.0

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It is difficult to understand what it’s like to live with an ostomy, or counsel someone on what to expect, if you’ve never had one yourself. With this challenge in mind my son Tyler and I created Project WOW (Wear an Ostomy for the Weekend) and offered it to attendees at the Fall 2015 ImproveCareNow Community Conference, with the goal of helping people gain some perspective by “walking in patients’ shoes” for the weekend. Recently, at the Spring 2017 Community Conference, we offered Project WOW again, with a few new twists.


Project WOW (Wear an Ostomy for the Weekend)

Wear an Ostomy for the Weekend Supplies at ImproveCareNow Community ConferenceProject WOW (Wear an Ostomy for the Weekend) was created to help the ImproveCareNow Community learn more about what patients wearing ostomies go through on a daily basis. The Parent Working Group (PWG) and Patient Advisory Council (PAC) wanted to create a learning opportunity where we could work together. We knew this project would only give a snapshot of what patients go through because participants wouldn't have had surgery and the ostomy wouldn't be functional. But we still believed it would be powerful because participants would be learning from perspective, spending some time "walking in patients' shoes", which is something often times difficult to accomplish and not easily seen.


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