ImproveCareNow Ibd


None of Your Business

For a long time, I thought I owed people disclosure of my Crohn’s disease. I thought it was as obvious as my hair color and couldn’t get far into a conversation without it coming up in some way. And in truth, virtually any story from the last nine years relates back to my IBD, but nevertheless the disclosure was a near-immediate thing.

 

I challenged myself when I came to school to not tell people. Not to hide it from anyone, but to be Jennie first and a person living with Crohn’s second. But now, as I apply to graduate school, I feel torn.

 

Whenever I tell someone that I want to be a pediatric psychologist for chronically ill children, they always raise their eyebrows and comment on how specific it is. Why, they want to know, did I choose that? Well (insert sigh here), I often tell them, I have Crohn’s disease.

 

But this, in all reality, is not really true. Of course I do have Crohn’s, but I don’t want to be a psychologist because I have Crohn’s. My exposure to pediatric chronic illness was because of being a patient, but why I want to pursue Psychology is because I’m extremely passionate about the field and doing research. Not as a patient, as an academic.

 

And this is the push and pull of my disclosure saga - to tell or not to tell. It’s one thing when I’m sitting face to face with someone and have the opportunity to explain and show (aka flash) my ostomy and delve into my whole gut-filled story. Sure, okay. It’s quite another when I’m applying to graduate school and trying to articulate my relevant research experience, to people that I have never met before all over the country who will likely only look at my application for a matter of minutes. In this case, disclosing excessively seems unnecessary - an unprovoked therapy session almost - and so I’ve tried to step carefully, disclosing succinctly in a way that does not consume my personal essay.

 

The heart of the issue is that it’s my story to tell. Disclosing is a choice and I get to decide who gets to know. Be it for graduate school, or a new friend, or a boyfriend, I can choose whose business it is.

 

Because I am not Crohn’s. I am Jennie, and proud of it.

 

Jennie


ImproveCareNow to Publish CIRCLE on IBD Transition

CIRCLE eNewsletter is published by ImproveCareNow for Patients and Families living with IBD

The December issue of CIRCLE will be published on Tuesday November 27th.  The eNewsletter, which is published by ImproveCareNow for patients & families living with Crohn's disease and ulcerative colitis, will feature parents talking about transition points, supporting each other and the importance of caring for their kids now.  We'll include some tools and resources on transitions too.  And as always, you'll find links to trending IBD topics from the past month, up-to-date ImproveCareNow remission rates and more.  Don't miss it. Sign up to have CIRCLE delivered to your inbox today.


The Butt Campaign

http://www.youtube.com/watch?v=7-K2B1-6cQk

Do you pledge to be a pain in the butt?  Until a cure for IBD is found.


Laugh & a Half

It seemed like a good idea the way that all things seem like a good idea at first. I told my Mom, and this was her exact reaction, “What? You’re going to run a half-marathon?” My Mom laughing at me should have been - for a normal person - a road-sign to turn around, to rethink the plan. But no, instead I smiled and said, “Yes!”

 

But this story doesn’t really begin with me. It begins with an email. I met my very dear friend Taylor through The Gutsy Generation blog. Without fail, we would text or email daily - but we had never met in person. We were enthusiastic to meet in person (I know, it sounds like a cheesy romantic comedy, but stay with me), but it seem idealistic and near impossible between our school schedules and the geographical distance. But - if there’s a take-away message to this blog post - never, under any circumstance, underestimate two gutsy girls.

 

And so, one day in June, Taylor and I decided to run the Niagara Falls International Half-Marathon. Crazy? Yes. Gutsy? Certainly. We were both runners already and it was a fantastic excuse to meet in person. The preparation got underway with the creation of a ‘GUTSY MARATHON MIX’ (yes, in all caps!) and the continual sharing of songs to be vetted for the playlist. I booked my flights - it was all happening for real.

 

I’m not an especially athletic individual, but in the last few months since my surgery in January, I’ve hiked Machu Picchu and completed a sprint triathlon, so it only seemed right to continue on in my crazed athletic quest. I had told several people about the race, including my roommates who made the most adorable signs for me around our apartment. Jennie's SignEarly Thursday morning, I boarded a plane and met my very good friend in the flesh. And it was as if we’d always known one another. We continued to find little things that fueled our theory that we’re the same person (e.g. we use the same toothpaste, go to schools with the same initials, etc) - we might have become friends because of our IBD, but we remained friends because of who we are as people.

 

The half-marathon was not for IBD awareness, but that didn’t deter us. We made shirts that had our last names on the back, our year of diagnosis, and then ‘Colonless 1’ and ‘Colonless 2’ on the sleeves. In a word, we were psyched. Morning found us quite early on Sunday, and we gathered in the kitchen, making our marathon breakfast, grinning sheepishly at each other and trying to imagine completing the 21 km course.

 

The day was perfect - perfect weather, perfect scenery, perfect. The course followed the water and with the changing leaves, it was a beautiful (albeit very long) Sunday run. People were cheering, holding water on the side of the course, there was even a little boy with his hand out for high-fives (of course I stopped and had to restrain myself from asking his parents to take a picture with me). It was just me and my iPod and the bounce of my braid against my back as I ran. Just open road and sunshine and a very big, but attainable, challenge ahead of me. I began the race to “We Are Never Ever Getting Back Together”, my ostomy anthem, and was ecstatic to be able to listen to my gutsy marathon mix during the race. There were moments when it was hard and my feet were sore, moments when I tried to drink the water while running and instead doused myself in it, and moments when the sound of the crowds cheering and the cow-bells ringing could only make me feel so happy to be where I was.

 

I felt this exact way in Peru and during the sprint triathlon - you look forward to the finish line so much because there’s a sense of accomplishment and awe, but those last few feet when you can see it, you want to turn around and do it all again. I sprinted the last 100 meters or so, crossed the finish line, which was amazingly at Niagara Falls, and was given a pro-style aluminum-like cape and a medal. I. Had. Done. It.

 

Jennie at the Finish LineNow to get all philosophical on you: In life, and especially life with IBD, there are no guarantees. There are ups and downs, times when you feel awesome and times when you’d prefer to pull the covers over your head and pretend the world wasn’t waiting. Taylor and I had a mantra the entire weekend leading up to the race, “Hell or high water”. We were both sick or injured in some degree, but were determined and completely obstinate - we were running the race and nothing could stop us.

 

Hell or high water, people. Hell or high water.

 

Jennie


What We Wish Our Parents Knew

Mother and Daughter not talking

At ImproveCareNow’s Fall Learning Session, the Patient Scholars and parents had a special breakout session together. At the parents’ request, Jennie and I (Sami) have co-authored a list of What We Wish Our Parents Knew navigating IBD through our teenage years:


This is it

After years of planning for transition, this is it. On Monday, my son will borrow a car from a classmate, drive himself 35 miles from his university campus to a Dallas hospital, use valet parking for the first time, check in at an infusion center, and get his Remicade infusion, alone, for the first time.

He’ll be far from his Ohio home and far from me. This will be his 53rd infusion; I’ve been there for nearly every one.


Parental Guidance

Curvy Road SignHaving a child with IBD means many things. It means learning a new language, a new way of living, developing new family dynamics, gaining a new perspective, and seeking, desperately, to get guidance (and to give guidance). Also, it reinforces the notion, "You don't know what you don't know." But, luckily at my child's care center, and across the ImproveCareNow Network in which our care center is a participating member,  guidance is available to parents and guidance is also sought from parents.

 

As I watch my child learn to live with Ulcerative Colitis, I learn too. So, not only does my parental guidance come from her medical team and other parents, it comes from my child as well. She guides me by letting me know I am being overprotective or questioning too much - how did you feel today? what was your level of stomach pain? how many times did you go to the bathroom? - and that sometimes it is best to just leave the UC inquisition for another day. When she is feeling good, she just wants to relish the moment and forget about UC. She guides me to live in the moment as she has learned to do and to appreciate the gift of now.

 

Parents as partners and teachers is important to a child's medical team. Parental guidance is a must when communicating a child's flare pattern as it is as unique as are our children. My daughter's care team relies on me and my husband to guide them through her symptoms and health pattern so they can care for her better and deliver better outcomes.  It cannot be "family-centered" care without the family participating as partners in a child's care.  Doctors cannot provide the best care for IBD kids without parental guidance.

 

As my child is a tween, my parental guidance to her during a medical visit is to model clear communications with her medical team. When my children were very young, I would always say before a doctor's visit, "Doctors are like detectives, and we have to give them the clues to help them solve the mystery."  Teaching our children how to communicate with doctors is a necessity.  With her teen years fast approaching and college around the corner (in my mind anyway), I must use my parental guidance to prepare my daughter for life-long medical care without me. I must model the behavior she needs to learn to do life with UC on her own, someday.

 

Even though my daughter is only a tween, her transition to being able to care for herself must begin now.  While I want to be by her side through her IBD journey forever, the reality is I cannot do that.  So I must not fail her by not preparing her or guiding her toward this kind of independence. We are very fortunate, our care center has a formal transition program from pediatric to adult GI care.  It  is just this type of guidance that I need to receive from them to do this right.

 

ImproveCareNow (ICN) made transitions a focus at their recent Learning Session in Chicago.  Young adult patients, medical professionals and parents came together to bring their perspectives, provide their guidance for the many transitions children with IBD face and how to navigate them as smoothly as possible.  Across the ICN Network,  parental guidance is not only needed, it is valued.  The ICN Parent Working Group (PWG) is proof of that - parents from ICN centers are coming together to guide one another and the ICN Network.

 

When a child is diagnosed with IBD, or any chronic disease, parental guidance is important. Why?  Because family-centered care requires a circle of communication and guidance from all involved at different points on the journey.   It is the needed model to resolve the issues and meet challenges of pediatric IBD. Without the many facets of "parental guidance", our children will not live as well as they should with IBD.  So not only is parental guidance important, I believe it is required.


Gutsy Friends + Geeking Out + Taylor Swift = A Great Weekend

I was standing in a dimly lit ballroom, full of researchers in their weekend clothes, eating celery when I saw her coming towards me. Her being my friend and fellow PACer Sami, a backpack on and a big bag over one shoulder, a wide grin breaking on her face. We ran at each like you see in those slow-motion movie scenes, met each other in a big hug, then, smiling at one another, introduced ourselves in person for the first time. This is the funny thing about gutsy people meeting - we know each other in a way that others don’t, even though we’d never met face to face. And just like that, it was a gutsy friendship at first sight.

 

We were abuzz with excitement in the nerdiest way - surrounded by researchers and GIs - we couldn’t keep from smiling at the scene. The ImproveCareNow Learning Session was completely novel to me in how Sami and I, as the two C3N Project patient scholars, were included in a conference designed for researchers. It was sort of like looking over the fence into someone else’s backyard, and all of the researchers were more than welcoming and excited to have us there. In case it is not abundantly clear by the end of this post, I am a huge researcher groupie - like huge, I was geeking out the whole time - and was so thrilled to be a part of the Learning Session.

 

Sami and I begrudgingly discovered that we had been given individual rooms - a thought which would likely please someone else but not us - so we decided to remedy the situation and move her things into my room (because it would have been a tragedy to have lost bonding time!). The first night we stayed up way past our bedtimes sharing stories and showing off the things we had brought to put on our storyboards. Finally by 1:30 AM, we conceded that it was probably time to go to sleep since we had to rouse ourselves at 6 AM, so we climbed under the covers and said good-night.

 

Saturday was filled with so many incredible things that it’s hard to recount them all, for any words I pick cannot accurately describe my enthusiasm or the entire experience. Having been given access to the Twitter account so we could send real-time updates, I became (even more of a) Twitter addict, tweeting everything from that first breakfast (Chicago was so ready for me with all of the bananas!) to quotes during the opening remarks. As someone who has IBD, it was really humbling and phenomenal to see all of these dedicated researchers and doctors working to improve care in pediatric IBD. I have found myself over the years struggling to establish medical legitimacy for my disease, and yet amongst this group, everyone understood, encouraged, and believed in youth with IBD - it was unbelievable.

 

We got to attend a session with parents and it is something I will never forget. Their faces were bright with enthusiasm, their children so young and hopeful, but their futures unsure. There was relief in their faces when they saw me and the other patients - knowing that their own kids with IBD would be okay and happy and smiling and at school and living life. I had never thought of my parents in that way before - the uncertainty, the fear, the love for their children - and I was incredibly touched by their compassion and insight into what it is like when your child has IBD.

 

The patients and parents had set up storyboards on the periphery of the conference room, and I would peruse them with Sami at my side, the two of us falling in love with all of the children. There is something odd and unnameable about looking at a child and knowing some of the IBD challenges in his or her future - those nights when there’s nothing to do but cry, days in the hospital falling asleep to daytime television, and times when the very thought of leaving the house seems impossible. But I know too that there will be moments - bigger and greater than the moments of pain - where the world will open right up for these kids and they’ll be unstoppable. I wish I had met them in person - but that can be my next trip to meet my little IBD crushes.

 

For the last day of the conference, Sami and I had been asked to choose our ‘IBD theme song’. On Saturday night, Sami and I laid on our bed, exchanging song options until we had found the perfect ones. The big reveal of our IBD-theme-song-extravaganza had been saved for the very last part of the conference, and we handed over the songs on a USB stick.  But when it came time to announce the songs, instead they called Sami and I to the podium. We got up and began to laugh nervously as we threaded our way through the sea of chairs and tables. Sami went first and played ‘The Fighter’ by Gym Class Heroes and we began to dance at the front of the room. Upon introducing my song, I explained that it was an ode to my colon - and ‘We Are Never Ever Getting Back Together’ by Taylor Swift began to play. The researchers laughed and clapped as Sami and I began to dance again and we were laughing with them.

 

ImproveCareNow Patient Advisory CouncilIt was the conference I’d be looking forward to for so long, enjoyed so much, and was over way too soon. Before I could blink, I was sitting on a plane bound for Boston. All of my roommates were out when I came home.  I unpacked and called my parents, telling them all about the trip and the countless amazing things that had happened. The next day, I went to the gym and just before I put my headphones in, a certain song came over the loudspeaker and I couldn’t help but grin. ‘We Are Never Ever Getting Back Together’ was on and I briefly considered taking out my ostomy and dancing, but felt that the joke would be lost on my college peers. I put my headphones in, the smile stuck on my face, thinking of my weekend and the great things to come for all pediatric IBDers.

 

Jennie


Population Management Drives Improvement at University of Michigan

The ImproveCareNow Quality Improvement (QI) Team at the University of Michigan has been working very hard at improving their QI processes. They now have had a long trend of improving remission rates from one population management report (PMR) to the next. But like good researchers, they had to ask themselves: is this a real improvement in disease status for our patients, or an artifact of better data?

 

 


Port-o-Potties: A Necessary Evil

An Alcatraz Bathroom Installment:

 

Before I begin, I share with you the following from the fountain of all knowledge, THE WIKIPEDIA, regarding a particularly horrifying story published by Stephen King in his fifth short story collection, “Just After Sunset.” The story is called, “A Very Tight Place.”

 

"Curtis Johnson . . . is lured to a deserted construction site by his neighbor, Tim Grunwald, with whom he's been having a legal dispute involving Curtis's beloved dog, Betsy, who was killed by Tim's electric fences. He is confronted by Tim who forces him into a Port-O-San, tips it over and leaves him trapped there in the heat of a Florida summer day to die. With no way to get help, Curtis must figure out how to escape or die.”

 

Can you think of anything more disturbing? Being tipped over in a port-o-potty, on a hot day, and being literally consumed by “what’s down there”? I think about this EVERY time I use a port-o-potty.  By the way, I’m not going to spoil how the story ends. If you just can’t go on without my giving away the ending, I must quote two great modern characters from the classic film, “The Princess Bride,” which recently celebrated its 25th anniversary:

 

Inigo Montoya: I must know.

 

Westley: Get used to disappointment.

 

Let’s be honest, shall we? We’ve all been there. You gotta go, but the only option is a nasty-looking port-o-potty. (Also from THE WIKIPEDIA. The following names for these gizmos that I have been referring to, and will continue to refer to, as a “port-o-potty” (even though I REALLY like the last one): P-Pot, Porta-John, PortaJane, Port-O-Let, Port-a-Loo, Portaloo, Porta-Potty, Tidy John, Kybo, Biffs, Standard Porta Potty Restrooms and Toi-Toi).

 

A problem unique to port-o-potties is that I find that there’s no, absolutely zero, thought for the next user. “Hey, this thing is already SO NASTY. I’m not going to spend two seconds wiping my feces off the seat for the next person. That next dude isn’t expecting a positive experience.”

 

I cannot express the level of nausea that I am currently experiencing just thinking about this. I could barf right here at my desk. Which would be bad. I’m taking deep breaths to calm the lightheadedness. Also small sips of Diet Coke.

 

Unlike other Alcatraz Bathrooms, upon entering you really have no choice but to do something with the seat. I don’t usually see the option of a toilet seat cover, so you’re relegated to using TP. I have found the TP dispensers in port-o-potties to be of the sub-standard, high-friction variety. You know what I mean. You can’t grab off a long piece easily. In fact, you have to slowly pull (or pull and turn) so as not to break off a piece that is utterly useless for your purposes. Did I mention that, if you’re in this situation at all, you gotta go? This preparation takes time, people. TIME YOU MAY NOT HAVE.

 

Fact is that many of us have no choice. In fact, WE SEE THE PRESENCE OF A PORT-O-POTTY AS A BIT OF A SAVIOR. Isn’t that sad but true.


← Previous  1  2    18  19  20  21  22  23  24  25  26  Next →

Built by Veracity Media on NationBuilder