ImproveCareNow Parents


Parent and Caregiver Self-Care Tips

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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:


As the holidays come and go

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Holidays are a special time for all. The hustle-and-bustle is paid back in spades as you watch a child’s joy when they unwrap a special gift or when you spend time with extended family. A few years ago, I was given a very special gift at Christmas – one which I will never forget.


NO Public Restroom – A Parent Advocacy Story

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A few years ago, I was in a retail chain store and the person in front of me at the cashier asked to use the bathroom. The cashier said, "We do not have a bathroom." So, when it was my turn to cash out I said, “You have a bathroom...you just don't let the public use it?" She answered me, “Yes.” I thought to myself that this would be a great teaching moment.


Putting Data to Work to Answer Questions: Evaluation of Adalimumab Effectiveness in Anti-Tumor Necrosis Factor-Naïve Pediatric Patients with Crohn’s Disease in Clinical Practice

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The ImproveCareNow Registry is a treasure trove of information about patients living with IBD. But, data, like Amazon gift cards, are worthless unless used. And it takes some intrepid, or at least good-with-numbers, Indiana Jones-type researchers to plunge into the depths of the jumble of figures – to put the data to work to answer questions.


The Virtual Community Conference Helped Me Help My Son

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My four-year-old son had recently been diagnosed with Crohn’s disease, and the worst part about the whole thing was the needles! IVs, blood draws, shots, Humira injections, etc. Around the same time as his diagnosis, I attended an ICN Virtual Community Conference and that’s where I heard about Buzzy.


To Scarlet

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This summer marks the six-year anniversary of the beginning of my role as a caregiver for a child with a chronic illness. At times, my daughter’s diagnosis seems so close – and yet so far away. In those six years, she has blossomed from a child into a beautiful young woman. Today she can speak with authority about her care, her medications and her routines. Six years ago, she couldn’t pronounce her medications - let alone tell you the dosing.


Project WOW 2.0

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It is difficult to understand what it’s like to live with an ostomy, or counsel someone on what to expect, if you’ve never had one yourself. With this challenge in mind my son Tyler and I created Project WOW (Wear an Ostomy for the Weekend) and offered it to attendees at the Fall 2015 ImproveCareNow Community Conference, with the goal of helping people gain some perspective by “walking in patients’ shoes” for the weekend. Recently, at the Spring 2017 Community Conference, we offered Project WOW again, with a few new twists.


29 reasons I may be unintentionally ignoring you

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I’m Wendy and in addition to being a baby/child sleep coach (I love helping families sleep), I care for my 5 year old daughter who was diagnosed with Crohn’s disease in September 2016. As we have been adjusting to life with IBD I’ve been journaling how I am spending my time. When our pediatric GI introduced us to ImproveCareNow I wanted to share my story to support others who may be going through a difficult time and to hopefully explain why I may be unintentionally ignoring friends and family.

Here are 29 ways I have been spending my time:


What's the buzz on Buzzy?

Liz is a mom of three whose youngest son was diagnosed with ulcerative colitis (UC) at age five. To manage his UC he takes Humira injections, which are known to be painful. Liz remembers vividly how stressful and difficult it was to get past the pain and anxiety on injection day. The process of negotiating would take nearly an hour, and when the shot was finally given everyone was totally drained. Not willing to accept that this was just the way it had to be, Liz started researching and discovered Buzzy - a device that distracts from injection pain by confusing nerves with both temperature and vibration.

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Dear Parent Partners...

If you are like me, there are times you are on pins and needles with your child that has Crohn’s or Ulcerative Colitis; wondering if they will continue to do well or if the next cold that requires antibiotics or a bout with the flu may take you back to square one in your attempts to get IBD under control. It is the unknowns that scare me about dealing with this disease...

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