LOOP Blog

I started off my life with Crohn’s as a nine year old boy with very little support outside my family … and frankly I just did not want anyone to know. I had some goals – mostly about excelling in school. During my years of elementary school and junior high, I told nobody about the battle I was having inside.  I didn’t want anybody to know about it and I certainly did not want to stick out from the crowd. “I want to be invisible,” I remember myself saying.

If you ask my friends now, they will most likely tell you that I stick out like a sore thumb. After you show your face on a video screen in front of the entire high school to tell them about Crohn’s everyone pretty much knows who you are. The other thing they might tell you is that Alex loves not being "normal" and he is okay with being different.

Some of this perspective on my changed life came to light while I was sitting in church listening to a sermon. I honestly don’t listen to all the sermons.  Maybe it’s that some of them are just over my head; but this one was different.  In his sermon the minister at my church compared the breaking of bread to the breaking open of one’s heart. He says, “We don’t usually think of being broken as a good thing. The word ‘broken’ really has a bad sense about it, suggesting that something is useless because it doesn’t work anymore. But suppose we think of it more in terms of ‘broken open’ and offering a way to get to the inside of the thing.” His philosophy about broken hearts really struck me. I wonder now whether he wrote this sermon about me.  Because when I think back I was broken (or at least my intestines were); and somewhere along the way that broken heart or broken situation, in my case, opened up.

I am now okay with everyone knowing I have Crohn’s.  I don’t have to hide in a corner when my Mom flushes my PICC line and I am okay wearing my backpack with my TPN lines hanging out and the pumps whirring away in public.  I enjoy meeting with my Doctor and talking about my disease with him, and speaking to other people with ostomies and IBD. The things that I hid from before have turned into my favorite things to do. The shy, soft-spoken boy has been replaced by an open, out-spoken one because I was willing to open my heart to my disease.

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

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.

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.

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. Early 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.

Now 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

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:

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 53^rd infusion; I’ve been there for nearly every one.

ImproveCareNow Remission rates are posted for September 2012 for centers with greater than 75% enrollment of eligible patients.  We have also shared them on our website, in CIRCLE, and on our Facebook page.

Having 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.