ImproveCareNow Pac


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!


I decided it was time to own my disease

My name is Talia; I am a high school student. I was diagnosed with ulcerative colitis (UC) in May of 2016. Many people don't know that I have a creative side, and that I draw and paint for fun.  


The Helpers

It’s June 3rd. And it has been 24 hours since I’ve been home. Far from bugs, insects, snakes, coyotes (which I disappointingly did not see), and beautifully, loud, energetic children. It has been 24 hours since I have returned from Camp Oasis. It has been 24 hours since all those helpers, my fellow counselors, have left camp and gone back to the inevitable “real life.” But I know even in their real lives, they will continue to be helpers, just as they were at camp.


I love my perseverance

I am a second-year engineering major. I tend to be a very academically driven person with high expectations of myself. I love my perseverance, but sometimes my own determination to achieve my goals is my biggest stressor. In my mind I set goals for myself constantly. And naturally when I don’t meet my goals, I am disappointed.

These habits manifest in many facets of my life, but particularly in my academic life. I set goals for tests and grades and expectations for interactions. When I don’t do as well as I would like, it can be rough, and I end up stressed out.


I was torn between needing to rest, and not wanting to miss out

I had the pleasure of attending the ImproveCareNow Fall Community Conference in Chicago in September. I had a great time meeting my fellow PAC (Patient Advisory Council) peers in person! They helped guide me through the various panels and workshops. I do admit that there were times when I felt overwhelmed. Not necessarily in a ‘negative stimulus’ overload, but overwhelmed with information, discussion, and flow of support from my own peers, parents and families, administrators and providers. There was one point during the conference, quite early in the morning, perhaps no later than 10:00am, where I was struggling to keep my eyes open – my old friend fatigue was back. I had to excuse myself to go back to my room to take a nap. Guilt, another familiar friend, greeted me. I was torn between needing to rest and not wanting to miss out on learning.


IGNITE - I choose to ask the hard questions

"Everyone's story matters, and is important, and can change someone else's story!" - Sami Kennedy

Stories matter! They connect us; build awareness, understanding and empathy; they unite us in our pursuit of a common goal and sometimes they even ignite (or reignite) our passion for the work that lies ahead. When PAC member Maddie shared her story – her #IGNITETALK – at our Fall Community Conference the energy in the room was palpable. Here’s the transcript of her talk.


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.


Patient Perspectives: Nutrition & IBD – a New Resource for Patients by Patients

My name is Maddie. I am a member of the Patient Advisory Council (PAC) and a contributor to the PAC’s latest IBD Resource – Patient Perspectives: Nutrition & IBD. This booklet is very important to me and the other contributors who have used nutritional interventions to treat and manage their IBD.

Nutrition is an important part of life and for IBD patients it can play an essential role in overall health. Nutrition can be used as a primary treatment, as well as secondary or complimentary treatment, which can support overall well-being. Sharing our experiences with nutritional interventions helps us raise awareness of how nutrition fits into real-life IBD treatment and management. It allows us to offer support and reassurance to other patients who are making decisions about or coping with nutritional interventions – that they are not alone.


There really is strength in numbers.

Hello! My name is Mahalakshmi (Maha for short!), and I am 18 years old. I have Crohn's disease, which was diagnosed two and a half years ago, but I've definitely had it way longer than that. I am attending college in California in the fall as a biology major and I'm excited for what the future holds! My hobbies include singing, acting, spending time with friends and family, and playing board games. One interesting thing about me is that I love languages. I've been bilingual since I was a child and started learning another language in high school that I hope to stick with in the future!


Crohn's has shaped my career path

My name is Rohit and I am 20 years old. Right now, I am a rising junior majoring in Genetics with a Certificate Program in Computational Genetics at an Honors College in New Jersey. I was diagnosed with Crohn's disease in 2016. One interesting thing about me is that I'm the only one above 6 feet (actual height: 6' 2") in my entire immediate family!


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