Posted by ImproveCareNow™ on December 13, 2021
LOOP is an important venue for our community to keep #TalkingAboutIBD. It’s a place where #StoriesMatter - where they connect us, grow our confidence, validate our experiences, remind us we are not alone, and motivate us to continue improving together.
So far, in 2021, 70 stories have been shared #InTheLOOP. Patients, clinicians, parents, dietitians, researchers, and staff & leaders from across the ICN Community have written about IBD from their unique perspectives. They have covered topics ranging from support and advocacy to the importance of sharing openly and talking about IBD, from research and innovative projects to personal struggles, triumphs and hopes for the future.
Without further ado, here are the stories you read the most in 2021!
Feeding tubes are something more people should know about
“Hi, I’m Makenna and I’m here to talk to you about Feeding Tubes. In my experience, they are something not a lot of people know about and I want to change that.”
Makenna shares her personal experience with feeding tubes, as well as information about tube placement, how & why feeding tubes work to deliver nutrition, feeding tube stigma and how body image and mental health may be affected.
What I Wish I Knew About J-Pouch/Ostomy Takedown Surgery
“I hope this helped you feel more comfortable and informed about what to expect after surgery and with a new J-pouch…”
Looking back at her ostomy takedown or J-Pouch surgery experience, Hannah realized there were things that she wished she had known, and she decided to share what she had learned in case it might help others. She wrote this post with input from a pediatric GI surgeon in the ICN community.
Know your iron status: Iron deficiency and IBD
“Anemia is common in IBD and iron deficiency is the leading cause. Studies show up to 95% of individuals newly diagnosed with IBD are iron deficient.”
An informational post about iron deficiency and IBD from the ICN Registered Dietitian group, which includes common symptoms, as well as what to expect with testing, treatment, management and prevention.
No bones about it - Vitamin D & IBD
“Getting enough vitamin D is especially important for growing kids, because it is involved in bone growth, bone density and bone strength, and in growth itself. Vitamin D also appears to have other health benefits.”
An informational post that was coproduced by members of the ICN community, include Registered Dietitians and the Patient Advisory Council to start the conversation about Vitamin D and IBD.
ICN Research Explained: Sustainable Generation of Patient-Led Resources in a Learning Health System
“This study illustrates what many in ICN already believe – that engaging patients is possible, important, and vital to improving care!”
Jennie David, PhD, of the research team, teamed up with the ICN Research Committee and the Parent Working Group Research Subcommittee to create and share this parent-approved research summary.
I've Learned that I am Stronger than I Thought
“My name is Lordis, I am a 16 year old senior in High School and I have Crohn’s disease.”
New PAC member, Lordis, gives us an introduction and shares how Crohn’s disease has impacted her diet, family, schedule and especially how it has changed the ways she things of herself and her own strength.
Fatigue, Sleep, and IBD - A Patient Perspective
“Fatigue is an incredibly complex topic, and knowing that so many IBD patients are struggling with it motivated us to study the various factors that play into fatigue and how these can be better addressed in clinical settings.”
Mahalakshmi (Maha) co-authored this post with Nour in preparation for a breakout session the two presented at our Live Online Community Conference in fall 2021. In it, they shared their own personal experiences with and perspectives on IBD-related fatigue.
PAC Moment: Relationship with Food
“Over the course of my journey with Crohn's, I've had to learn and relearn what I am allowed to put into my body.”
Dietary interventions, nutritional drinks, tube feeding, TPN, special or therapeutic diets – there are many ways to address nutrition as part of an IBD care plan. This post by PAC communications co-lead, Vanessa, shares Maddie’s experience.
My niche will be to write about my experiences with different foods and UC
“I have read many blogs by IBD patients, and while many of them talk about their experiences with IBD, I thought that it would be practical to blog about something that may help people cope with their IBD.”
New PAC member, Nikhil introduces himself in this post, sharing about his diagnosis with ulcerative colitis, his love of sports and his desire to share his experience eating certain foods as a vegetarian living with IBD with the hope of helping others cope.
Energy bars have been vital on my IBD journey.
"Whether you believe these bars truly give you instant energy or not, they have been extremely helpful (and tasty) to me at many different points in time."
Nikhil is a regular contributor to LOOP and this is one of the posts in which he shares his experiences with food & lifestyle as a vegetarian eater with ulcerative colitis.
We are thankful for each and every one of the stories shared by folks across ICN! It is our hope that as more people stay #InTheLOOP with our posts we can:
- continue to bring critical awareness to chronic illnesses (like Crohn's disease and ulcerative colitis) that can be misunderstood because they are not always visible
- encourage people to connect with each other, to share information and support, so no one feels alone on their IBD journey
- build passion and momentum for our shared work of improving health & care of young people living with IBD
- keep the lines of communication open so we can all feel empowered to keep #TalkingAboutIBD
We look forward to sharing even more stories and perspectives in 2022 💚💙
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When you put your time and energy in on behalf of someone else - no effort is too small - because everything we do in ImproveCareNow is magnified by the efforts of thousands of other improvers. And together we bring about a better quality of life for many. Here are some actions you can take, or invite others to take:
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Invite someone to stay #InTheLOOP with our stories on the blog - "Sharing stories and experiences is affirming and validating. Our stories reach others and they help, which is the most wonderful part of being involved with ImproveCareNow." - Quint (We will be posting 3 more #IgniteTalks - like John's - to the blog over the next couple weeks. By signing up, you'll be the first to know!)
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Invite a patient (14+) to join the Patient Advisory Council - "Being part of the PAC helps me remember that I'm not alone in this journey." - Rhea
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Invite a parent or guardian of a child with IBD to join the Parent Working Group - "I believe I have helped other newly diagnosed families not feel as lost as I was. I believe I am making a difference in my community. And none of this would have happened if I hadn't joined the Parent Working Group." - Carrie
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Invite someone to download our free, co-produced IBD resources - "Physical resources provide patients with actions that we can take toward bettering our quality of life, as well as our current and future care." - Quint
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Invite someone to Join Our CIRCLE (connect with our welcoming & supportive community, and receive IBD resources, stories, and ICN updates & opportunities)