LOOP Blog

I am a parent of three children, and all three have Crohn’s disease. My oldest was diagnosed in 2010 and my younger two were both diagnosed at the same time, in 2013. As a parent of one child, let alone three children with IBD, I found life overwhelming, stressful, and mentally and physically draining. Personally, I have found self-care to be a critical piece in coping with the initial diagnosis and the on-going treatment and care of my children. I will be the first to admit I struggle with self-care at times, but at least I have a list:

Hi there! My name is Bianca. I’m and 18-year-old college student who loves Broadway and being a patient advocate with the PAC, my Crohn's & Colitis Foundation chapter, and the National Council of Crohn’s and Colitis Leaders. I was diagnosed at 15 with ulcerative colitis and since then have absolutely fallen in love with spreading awareness about Crohn’s disease and ulcerative colitis and fostering compassion around these chronic illnesses.

"A journey of a thousand miles, begins with a single step.” – Lao Tzu

Tough things are a part my routine (ahem, thank you Crohn’s). As I write, I’m waiting in yet another doctor’s office, which feels like a part-time job of mine. While I wait, I'm reflecting on the sheer amount of effort it can take to accomplish a thing as simple as getting out of bed.

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!

As I look ahead to my graduation from high school, I want to reflect on my IBD journey. Join me for a trip down memory lane. In 2008, I was diagnosed with Crohn's disease. Since then I have tried several different medications and treatments; I have been in and out of more doctors’ offices, hospitals rooms, and clinics than I care to count. At one point, I began to believe that Remission would never come for me. My future, free from illness, seemed so far away and unachievable; I felt hopeless.

My name is Zehra and I am 20 years old. I began experiencing symptoms that were probably resulting from IBD as early as five years old. I was not officially diagnosed until I was 14. After multiple severe relapses, consisting of profuse blood loss and dramatic weight reduction, my colonoscopy/endoscopy revealed I have Crohn’s disease. Unfortunately, my diagnosis happened at a time of severe disease relapse, which impeded my education significantly. I took several years off during high school to cope with my disease and multiple life challenges, which merited the need for self-care. During this time away from school, I explored my passions further to give me a sense of purpose, productivity, and victory over IBD. After so much struggle, I am finally in my last year of high school, and I'll be graduating in June if all goes well!

https://flic.kr/ps/3hiKuq

On January 24, the PAC hosted our first ever Twitter chat. We invited the whole ImproveCareNow community, as well as our Social Media followers to join us for an hour so we could chat about Surgery & IBD. In case you missed it, here are some event highlights.

When someone thinks about design, most likely this person associates it with the aesthetics of an object. This is not wrong because creating an aesthetically pleasing product, digital or physical, is part of the profession. But it is much more than the looks of a solution for an identified problem. Design has so much potential to strengthen and give power to a group of people and I am making it my mission to maximise this potential, rather than just focusing on the looks of a product. There are a lot of good examples of how ethnographic research, co-creating solutions with patients & experts, following trends, prototyping and iteration based on user testing can create fantastic product solutions. Because of that, I am exploring the benefit of design for paediatric IBD patients, who unfortunately will have a whole life of disease management ahead of them. Currently, I am working on my master thesis in Advanced Product Design at the Umeå Institute of Design in northern Sweden and hope to work together with you!

My name is Daan Hekking, I am 24 years old, born in The Netherlands and was diagnosed with Crohn’s disease when I was 18.

My name is Derek and my daughter, Caitlyn, was diagnosed with Crohn’s disease at age 9. At that time, I immersed myself in the medical literature and sought to build good connections with like-minded parents through organizations like the Crohn’s & Colitis Foundation and, ultimately, ImproveCareNow. Through ImproveCareNow, I have joined a community of patients, parents and scholars engaged in understanding, managing and treating pediatric IBD. This year, I was pleased to be offered the opportunity to engage at a deeper level with the ICN community, by serving as lead for the Parent Working Group Research Subcommittee for ImproveCareNow.

My name is Rosa. I'm 23 years old, and was diagnosed with ulcerative colitis when I was 11. I graduated from Lewis & Clark College in 2016 with a degree in Medical Sociology. I'd like to go back to school at some point, and get a degree in disability studies, social work/counseling, or public health (I still haven't decided which!) I'm hoping to find a job that allows me to use my own experiences with chronic illness to help others dealing with similar issues and frustrations!