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Top Ten LOOP Posts of 2019

LOOP is making impressions in the IBD community!

So far, in 2019, 50 stories have been posted to the blog by 40 ICN community members, including clinicians, researchers, coordinators, parents, patients, psychosocial professionals, and ICN staff & leaders. While the perspectives and the topics vary – as you can see in the tag cloud below – one of the common threads is that they are written by real people, talking about real life with IBD.

We are thankful for each and every one of these stories and hope that by sharing them we continue to do our part to raise awareness of these often-invisible illnesses and help encourage more people to get connected and talk about IBD.

Without further ado, here are the top 10 most read posts of 2019!


Relearning to Live

Sure, my parents drilled the whole “eat healthy, sleep well, drink water” thing into me and my sisters, but that was never entirely applicable to me. I had different rules. Having had Crohn’s disease since an early age, I was always seriously underweight and struggled to get enough nutrients. The goal for the first decade of my life was to eat as much as possible and specifically fatty foods that would build up my mass. But I was never hungry anyway; eating always ended in pain so getting enough food into me was truly quite difficult. I even tried supplemental nutrition drinks like Pediasure, Boost, and Kids Essentials but it wasn’t enough to help me gain weight.


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.


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:


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!


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.


PAC Welcomes Five New Members

Let's give a warm welcome to - and get to know - five new members of the Patient Advisory Council (PAC). Nicki, Rebecca, Becky, Sarah and Abigail are imPACting the lives of kids with Crohn's disease and ulcerative colitis, by raising awareness about the realities of life with Inflammatory Bowel Disease (IBD) and building connections and tools to support each other and all young patients with IBD. They are also using their voices and experiences to actively represent over 27,000 patients with IBD across the ImproveCareNow Network and are committed to collaborating and continuously improving outcomes. Let's meet them.


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