Posted by ImproveCareNow™ on December 12, 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!
From One Ostomate to Another – Becky Woolf
“Every single day, I have to live with the downsides of having an ostomy. But every day, I am blessed to live with the upsides.”
Becky writes a powerful piece about living with an ostomy (or any external medical device) and how there are definitely challenges, but also many beautiful upsides. She reminds us all to be kind and supportive to one another, and to remember that having a medical device is not a patient’s fault.
I Value my Quality of Life Over my Fear of an Imperfect Body – Becca Stovall
“I was diagnosed with ulcerative colitis at age fifteen, and my life has been tremendously impacted by it.”
New PAC Member, Becca, introduces herself and writes about how focusing on her quality of life, instead of what her body was like, help shift her entire perspective of IBD.
What I Would Have Told my Newly Diagnosed Self – Lexa Fenster
“Looking back on my sickest times, I can see very clearly that the one thing I wished I had was someone else with IBD who I could talk to...someone I could relate to and who could understand what it’s like.”
IBD has led to suffering, but also a lot of wisdom for Lexa. In this post she reflects on how important talking about IBD with other patients has been for her, plus half a dozen other things she would want to tell her newly-diagnosed self.
My name is Quint – Quint Townsend
“I was diagnosed with Crohn’s disease when I was 17, but had symptoms the year leading up to my diagnosis. A fun fact about me is that I love driving.”
New PAC Member, Quint, writes about his experiences with Crohn’s disease and steps he’s taken to improve his quality of life through cooking for himself, getting the right accommodations, minimizing stress, and getting connected with other people who have IBD.
Igniting Energy for Learning Networks – Alex Jofriet
“It can be hard sometimes to define learning networks to other people, but I always define learning networks as a community of people working for change.”
Alex started as a PAC member, then became PAC co-chair, and then went on to work as a coordinator at an ICN center. In this #IgniteTalk he reflects on his journey, the connections he’s made, and how ICN is like a family.
Becoming a Responsible Young Adult – Fionna Kopp
“As I recently moved to college, a couple states away from home (Colorado to California), I have been working on becoming more independent with my chronic illnesses—remembering to take my medications, knowing when I need meds refilled, and knowing when my next doctor appointments are.”
New PAC member, Fionna, introduces herself and shares some of her experience transitioning to college – moving away from home and learning how to balance school and her health more independently.
Packing for College or Moving Out: Some Extra Items for the U-Haul! – Noel Jacobs
“Looking back, if I could have packed anything else as I prepared to move away, it would have been the conscious realization that I had support and help, and the acknowledgment that I mattered and was worth the effort to have a good life.”
Pediatric clinical psychologist, Noel writes about transition and, sharing examples from his own move out of his parents’ house, he highlights some important knowledge and behaviors that can help you in your own transition.
Coping – I Can Do This! – Hindy Klein
“[The beads help] me remember that if I was able to do all that…I can definitely do this too.”
Hindy writes about coping and how there is no one-size-fits-all solution to help her get through difficult situations with respect to her health.
Science is the Voice of Reason – Rishi Mehta
“As a science-geek, I have found science to be the voice of reason...and research to be surprisingly effective in offering solutions to my day-to-day dilemmas.”
New PAC member, Rishi introduces himself and shares his passion for science and medicine, and how he plans to pursue his MD/PhD to treat and study IBD.
My Own Art of Talking About IBD – Natalie Beck
“Being honest about who I am and what IBD is like in my life has truly helped me cope.”
Seven years after being diagnosed with Crohn’s, Natalie is passionate about educating people and feels like she has a responsibility to share her story to help open people’s eyes to a life that may be much different than theirs.
Let’s keep talking about IBD and share even more stories and perspectives in 2020!
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