Body Image & IBD

Posted on 22 May 2013 by jendavid91

Having your body at the center of ongoing medical scrutiny is not the ideal situation in which to develop an individual and autonomous body image. We make room for scars and side effects, sometimes feeling as though who we are (and who we want to be) shrinks more and more. Developing a positive sense of self and body image is something every kid must face, but especially when it comes to IBD there is a role for everyone to play.

Since IBD is an autoimmune illness, it becomes complicated not to blame yourself when it’s actually your body’s fault, not yours. Girls tend to focus on what their bodies look like (e.g. – feminine) while boys tend to focus on what they can do (e.g. – run a mile). Medications like Prednisone can bring body image issues to the forefront, and this is an important opportunity for parents, family members, and the care team to rally around the child. For instance we might try diminishing reliance on weight as the marker of health and instead consider an activity that is valuable to the child and assess health by how improved their ability to do that thing is (instead of a 5 pound weight gain or loss being the marker for success, being able to go to school for a whole day would be the marker for success).

Forgo the black and white thinking of underweight or overweight, and remember that relationships with our bodies are things that we deal with our entire life (IBD or not). Help your child take ownership of their body – encourage them to try a sport or treat them to a haircut or a manicure. Do things that help a child develop a healthy relationship with their body and learn to respect it. Listen to your child’s concerns and validate them, even if you don’t think your child looks heavy, if he or she expresses feeling fat, talk about it, let them know you’re there to listen. If your child prefers a certain style of outfit or clothing to make them feel more comfortable, jump on the bandwagon and go with it.

Sami and I collaborated with PAC members Alex and Moriah to create a list of tips for helping your child or patient cope with body image concerns that may arise as a result of treatment. The personal pronouns that follow may refer to one or more of us.

Surgery/Ostomy: I truly believe that I can wear what I want and that no outfit will ‘give away’ the fact that I have a bag. I see my ostomy as something tremendously positive (part of that comes from how I talk about it, part of that comes from the supplies I use [some supplies are more ‘medical’, some more like ‘undergarments’]). People with an ostomy might think the looser the better, but in all reality I find that wearing things that hug the body is better – that way the bag doesn’t bop around but stays in place. Even if your child has a temporary ostomy, err on the side of positivity and encourage that kind of self-talk. Personally I don’t use special underwear or anything different, I just tuck my bag into some leggings and I’m all set. That said, for an interview once I didn’t want to be patting the bag making sure it wasn’t swelling, and used special ostomy underwear to keep things locked and loaded. There are special items if your child feels it is important, but ultimately I think the most important thing is feeling good about the ostomy and having a supportive environment to talk about it.

Calm, Cool, and Collected: For a lot of families dealing with a chronic illness, talking about medical decisions is inherently a tense topic. As I say to my parents, “I feel badly that you feel badly that I feel badly.” It’s sometimes tough for kids to bring up issues they have around their disease when they know it will make everyone upset. Reassure your child – I know it can be hard to talk about things that are bothering you, whether they be about your illness or not, but I am always here and want to support you – and mean it. Make time to talk, go out of your way to be available. By making it an everyday and ordinary topic, your child will feel more comfortable sharing and it will feel less stressful.

Spoonful of Sugar: It seems silly in hindsight, but when I went on Prednisone in the 8th grade, no one reminded me I wasn’t at my final weight destination yet. Kids are growing and still need to gain weight, and as such, weight shouldn’t be the enemy. They shouldn’t be fighting for one specific number. Start healthy conversations around weight and eating to be strong. Don’t count calories. Remember that our bodies need fat and sugar. Involve your child in planning meals and going grocery shopping. Try pulling out a weight chart to show your child that they’ll reach their final weight in a few years; they’re still growing and should enjoy eating.

Take Off the Weight: No matter how supportive you are at home, your child will probably feel self-conscious around their peers. On Prednisone, even though I didn’t gain much body weight, my cheeks definitely attained ‘chipmunk’ status. I was frustrated by it – it was one more thing I didn’t have control over. I was sick and as a result I was extremely thin; I’ve never been more dissatisfied with my body. I was in middle school then, and kids at school used to whisper behind my back and ask me to my face if I was anorexic. That hurt because they didn’t have any idea what I was going through and were quick to stereotype me because of the way my body looked. Bullying can unfortunately be a real issue for children with IBD, especially those on steroids. At home, try to foster confidence in your child and encourage a positive self-image as much as possible. Remind your child that they are beautiful and make positive comments about all different body shapes and sizes to model acceptance. Compliment your child on outfit choices and school accomplishments. Take the pressure off of how your child looks and focus on what your child does.

Comedic Genius: At the end of the day, disease or not, your child is a kid. Don’t forget to do fun things, laugh, make jokes, and have fun. Follow your child’s lead – for example, I tend to deal with my disease by being sarcastic. Tap into how your child expresses themselves – you could give them paints if painting is therapeutic, or host a family karaoke night if singing helps them relax. Do whatever it takes to help your child process their frustration. If it takes your child telling the surgeon that they would like to have a scar from surgery in the shape of lightning bolt on their tummy so they can be Harry Potter, roll with it (yes, I am speaking from experience)!

Think Before you Speak: Nix words like ‘fat’, ‘calorie’, ‘weight’, ‘side effects’ and replace them with ‘feeling strong’, ‘healthy choices’, and ‘fuel for your body’. Try saying ‘your body’ instead of ‘you’ (e.g. – Instead of ‘You are having side effects from Prednisone’ try ‘Your body is adjusting to the medication you’re taking to help make you feel better’). Remember that your own self-image is likely to influence your child’s self-image. We all have been dissatisfied with our bodies at one time or another, but being aware of what you say about your own and others’ bodies in front of your child in very important. It’s important to not only deliver the message that everyone is beautiful, but to deliver it with authenticity. Make sure your child knows no matter how they look they are perfect just the way they are. Their differences make them who they are and are something they should take pride in. In the end, Crohn’s and colitis shapes the patients it touches. It gives them battle wounds, stories, chipmunk cheeks, times on the royal throne, and poop conversation topics galore. Each of these things is something to take pride in and help make your self-image stronger.

Control Freak: When you don’t have control over your body, it’s important to feel like you have control over something. Encourage your child to choose a family movie or help you pick an outfit for an event. If your child is interested, get involved in an organization, participate in a fundraiser, and let them take the wheel for a bit.

At the end of the day, no disease or medication has the power to change the identity of your child (or patient!). In a society where we have a tendency to associate so much of ‘who we are’ with physical appearance, changes in physical appearance can be some of the roughest transitions forced on IBD patients – but together, we can make them less difficult and stay focused on what is really important.

In the words of PAC member Moriah, “My dad remembers me telling him in 8th grade that although I couldn’t do a thing to change how I looked outside, I was determined to be the most beautiful person I could be on the inside. Life isn’t about looks. I hope that in my life I have spent many more hours thinking about others than I have spent looking in the mirror. That’s empty if my identity and beauty come from obsessing about how I look. My idea of beauty is having a secure, inner beauty that no one can take away.”

Jennie + Sami + Alex

First and Last

Posted on 13 May 2013 by jendavid91

There are evenings like tonight that I am sure I will remember in thirty years. There’s nothing remarkable about tonight, just a quiet evening at home, only it entails being forced to watch the school’s football field undergo a Cinderella transformation into my way-too-soon college graduation. And as such, I am overcome with a simultaneous sense of relief and panic – causing me to nearly freak out at the sight of the stage being built with a near “WAIT I AM NOT READY TO LEAVE”. But alas, no one would hear me, so I will spare my neighbors the screaming.

Graduating college is funny – you spend so long thinking about what school to choose, and then what classes to choose, what dorms to live in, and which textbooks to buy or rent. I remember matriculation four years ago, sitting in the crowd of my new classmates, a pit in my stomach trying to quell my intestines from causing a scene. To think about how sick I have been these past few years – the sheer number of doctors’ appointments, pills swallowed, IV attempts, hospitalizations, scars now icing my abdomen, and an ostomy bag carefully tucked into my dress, it seems unbelievable. But I want to be clear and direct – college was an amazing experience, and while I perhaps had far from the typical four-year journey, I have so loved my time at school and done some wonderful things.

When I was graduating high school, people who didn’t know me well cautioned me with wrinkled noses that I should stay home, I was – after all – sick, and why would I want to go to school in another country? My parents, undaunted by my persistence in school choice, willingly sent me on my way (okay, not so willingly when it came to saying goodbye, but that I’m guessing is a normative going-off-to-college right of passage). I found friends who saw beyond my disease, who have laughed with me, brought me extra clothes in the hospital, met my doctors, and made cupcakes in my kitchen. I have done community service and had a job serving under-resourced preschools all four years. I have been doing research since freshman year, did a senior thesis and got a grant, and am being awarded a Psychology Research award at graduation. I’m graduating with honors. I have perfected my Patrick Dempsey addiction, finally understood how to use Tumblr, hiked Machu Picchu, ran a half-marathon, and never pulled an all-nighter. And just before graduating and really entering the ‘real’ world (whatever that actually means), I even went on a first date – make that second, compliments of vegan ice cream.

The point to the rambling – I went to college. I went to college with Crohn’s. I went to college and was sick. I went to college and had surgeries. But, I went to college. I went to college and did it in four years and am graduating. I did it. I did not do it alone, but I did it. And so can you or your child or your best friend or that new patient you had in clinic today who was frightened and sick.

As an English minor, I took a class this semester that centered around literary non-fiction. The final class project was to write an essay of our own – mine was a braided essay about the history of Crohn’s (look it up, the story is fascinating!) and my own personal experiences. I even interviewed my GI for the piece. After being undecided about the title for literally weeks on end, my roommates finally prompted me to accept the working title of ‘Not Where I Thought I Would Be’ – and they, as usual, were right. At one part in the piece, I wrote that my GI understands that even though I may be broken, I am not breakable. I sent him the essay, which he so kindly read, and sent me an email response. “I would dispute one thing,” he wrote. “You are not broken. You are whole.” And while the thought was enough to leave a permanent grin on my face and make me feel incredibly lucky and honored to have such a compassionate doctor, it made me think – he’s right. I am whole.

In pediatric chronic illness, the focus is often on what’s broken. Your ESR is too high, you don’t like taking injections, you miss school to see the doctor, band-aids dot your arms to remind you where blood was taken. There are pictures of your gut, all twisted and inflamed, the pharmacist knows you by name, your medical chart has several volumes. But we forget to remind ourselves of something really important – we’re still kids, we’re still growing, we’re still dreaming. Our bodies may be in need of support, but our souls and spirits and whole. Be it going to college or anything else, having a chronic illness is only part of the equation.

If the last few weeks have proved anything to me, it’s that life is always happening – even if it means my college graduation will be here sooner than I want. There are still so many firsts in store for me, so many exciting things ahead, and yes, enough challenges (both health-related and other) to keep me busy. Perhaps it’s not where I thought I would be, but to be honest, I’m pretty darn happy I ended up right where I belonged.

Jennie

Kicking Up Confidence

Posted on 9 May 2013 by samisophia

My lucky parents were blessed with a child who not only won the IBD lottery, but long before that diagnosis, had a severe reaction from eating a nut at age two. Growing up with a life-threatening nut allergy, I became accustomed to standing out from my friends long before my IBD diagnosis – but that is a story for another time. The point here is, I mastered the game of careful avoidance from a young age. Although I was not sensitive to the smell of nuts, I would take care not to even hang out in the same room as any. I was taught well that they were the enemy, and the farther away I stayed, the safer I felt.

So, you can imagine my surprise (read: horror) when, on my very first college campus tour, our guide announced that one of the distinguishing features of the campus was a large courtyard brimming with pecan shells. I stuck to the sidewalk when the group walked through the (admittedly beautiful) pit of possible death, trying hard not to let this unexpected development spoil a day that had been wonderful up until that moment.

I came home disappointed but determined. I returned for a second campus visit prepared. After two rounds of allergen testing (including literally walking into my allergist’s office with a bag of pecans and asking that we rub them all over my feet), we confirmed that although I had not outgrown my oral allergy to pecans, I did not have a skin allergy. So, one year later, I returned to that pecan court – and despite the March cold – donned flip flops and stomped all around that thing. My heart was racing, but I had to prove to myself that I could do it.

I was literally walking, kicking, and dancing through a Pit of Things that Could Kill Me.

But I did it. And nothing happened.

Three years later, I walk through that pecan court at least once a day. And sometimes, I feel a little surge of victory. I can do what I once thought I couldn’t do. Other times, though, I feel a pecan shell slip beneath the sole of my shoe and rub up against my foot – and despite the overwhelming evidence that I won’t react – I still look for a hive to pop up. I am safe – but I can never erase that twinge of fear and doubt.

IBD is similar in some ways.

I have been in remission for over two years. But in that moment I see a red-tinge on the toilet paper, my mind inevitably begins to race off in directions I know it shouldn’t go. I’ll think, ‘This is it. This is the first drop, and tomorrow there will be two drops, and then in a week there will be red all over the bowl, and then I will be on Prednisone, and I should go freak out now.’ I always manage to regain my common sense by the time I finally flush that terrible industrial grade skin-irritating toilet paper away, but the panic never fails to set in for just a moment there. Even now.

I know remission is not a cure, and thus I am always ready to lose it. When I feel an abdominal cramp come on, I know I should go straight to the conclusion that it’s just my menstrual cycle. That’s the most likely conclusion, and for three years, that has been what it always turns out to be – but my mind never goes there first, even now. Perhaps it’s a coping mechanism for when the day does come that I slip out of my remission – as if I think I’ll find comfort in saying, ‘Well, at least I knew this was coming.’

Living with a chronic illness, I am always walking through a pit of danger. Right now, I’m protected, my treatment is doing its job, but I know my armor is unlikely to last me forever. My 6mp probably won’t hold off my immune system until I’m old and gray, but in the absence of a cure, my disease isn’t going anywhere. Even my medications could hurt me one day.

But, just like with my nut allergy, there are things I can do to protect myself. I can take my meds on schedule. I can check in with my doctor every three months. I can be alert to my body and bowel movements so that I catch bumps in the road before they progress to flares. I can avoid behaviors and foods that might trigger problems, and do my best to keep my body healthy and rested.

It’s important to know what I can’t do, but it’s equally important to know what I can do. I can walk through that pecan court. And, with a touch of luck and a lot of cooperation as an engaged patient, I can be an IBDer who hangs on to that remission for what I hope will be a good long time. It’s important to know where I stand, but even more important to walk with confidence through wherever I am – whether it’s the sidewalk or a courtyard of pecans, remission or a flare.

IBD was certainly unexpected and (if I let myself become preoccupied with all the what-if’s of my disease) can be unnerving, but I am walking, kicking, and dancing through it.

Making the Team

Posted on 23 April 2013 by samisophia

In October 2012, I arrived wide-eyed and a little afraid at my first ImproveCareNow Learning Session. I remember walking into the big room with my luggage and taking in the scene – so many brilliant clinicians and researchers I admired and greatly respected all in one hotel for one weekend. And here I was, too. I am nineteen – and so to many, I’m just a kid still. I didn’t know what to expect, but I did expect to listen more than I spoke. After all, in a room full of some of my personal heroes, I was “just a patient.”

As the inaugural Patient Scholars, to say that Jennie and I have been given the opportunity to live a dream would be an understatement. For a girl who expected to listen far more than she spoke, my voice has been valued more than I could ever have hoped or imagined. Jennie and I are just two patients – but to think about how many patient voices can and will resonate at future Learning Sessions excites me more than I can express. It’s so clear to me now that “Just a patient” is not a concept that exists in ImproveCareNow.

On April 12th I returned to Chicago for the first Learning Session of 2013. Gutsy 2 (myself) may have been without her Gutsy 1 (Jennie) – but together through the art of virtual communication and the help of some friends, we didn’t let a sudden strike of illness take away our weekend of hard work and joyous celebration. We shared in a presentation on self-management support and treatment adherence. We opened up about our stories and the accomplishments of the PAC (Patient Advisory Council) over the past year. We were inspired by stories of progress and achievement coming from all around the network. I even learned a new dance – the PDSA – aptly named after a fundamental quality improvement measure – because QI is really at the heart of making care better and thus rightfully deserved a spot at the heart of the celebration! (I expect PDSA to go viral on YouTube any day now.)

For a moment, when I landed in Chicago, I felt that familiar sudden shock of fear. For just a moment, I felt little again, like I was “just a patient” with a lot of ideas on the fringes of a great big community. But, this time, when I entered the conference room, I knew I belonged in this community. In one year’s time, it’s my hope that more patients will have felt the joy of this kind of welcome.

Five years ago today, I was waking up early – colon all cleaned out – and driving to the hospital with my mom, neither of us knowing I wouldn’t be going home that day or that a whole new world was about to welcome us. Six months ago, when I arrived in Chicago for my very first Learning Session, I couldn’t have even imagined myself standing in front of such a brilliant crowd and sharing my story – a story that only just begins with a diagnosis and hardship – on the level I did last weekend. Today, I can’t imagine what comes next – but I know I’m humbled to have a voice that can share in the learning. I am eager to pass on the torch of leadership to the next Patient Scholars – because we all have stories, and many of the stories I heard last weekend touched me deeply and reminded me of why I do this.

I do this because, right now, another young girl and her mom are driving to the hospital – and they don’t know what comes next – but I do.

That young girl will get better. And maybe, if we all reach our hands out together to say that everyone can make a difference and is valued on our team, she’ll be able to help change care for the better for the next girl with IBD.

Like any good team, we are more than the names on the backs of our jerseys when we unite. In this Network we are more than the names we go by: patient, parent, researcher, clinician. I am so proud to have a jersey on the ImproveCareNow team.

Together, we have quite the winning streak. And one day, I really do believe that we will achieve that cure, together.

All or Nothing

Posted on 8 April 2013 by jendavid91

This semester alone, I have heard the phase “all or nothing” easily a gazillion times. Okay, I might be exaggerating here, but what I’m trying to say is that my psychology classes have discussed – repeatedly, at length each time – the ‘danger’ in “all or nothing” thinking. And it’s very true, because things are never black or white, things are not all or nothing. It’s not as easy as saying that someone is sick or healthy, there are grey areas in the middle, that slick slide you find yourself on traveling from one side to the other.

I hear my professors say this – I have proof of this scrawled in my doctor-worthy handwriting – and yet, I watch them crash through the glass walls they just built. Today in a class, a guest lecturer was talking about chronic pain. I know the guest lecturer meant well and he was in truth ultimately very determined to make a difference for those living with chronic pain.

But – some rules of thumb for doctors/parents/anyone reading this: not everyone who will deal with chronic pain/illness is anxious or depressed. Everyone (illness or otherwise) will deal with anxious and depressed moments, absolutely, but that does not mean they present with clinical psychopathology or that it is the heart of the problem.

One of the points this lecturer made was to help encourage positive thinking, active lifestyles, and a sense of control. So here’s an important note – if you want patients to have positive thinking, the doctor has to be positive with them, if you want patients to have a sense of control (and better yet, not just a sense but actual control), then a doctor has to be willing to share. It’s not all or nothing, it’s not you versus me, it’s us, here together – the ‘chronic’ should be a hint that there’s a plethora of time together. So use it wisely.

With each passing lecture, the urge to stand on my chair and shout (no, not ‘Captain my captain’, though that would be pretty awesome) “Hey you, listen, I’m a patient and I disagree. You can’t judge me or make blanket statements about me and all patients because you don’t know me.” This might cause massive disruption to the class and/or result in a stern conversation about being adults and not interrupting others when they’re speaking. But, like every kid knows, if you don’t have anything nice to say, you shouldn’t say it at all.

Sometimes I think people forget that patients are not lab rats. We’re not a separate population, smushed somewhere between children and adults. It’s like wearing one of those really itchy and constricting outfits for a family function and all you want to do is rip it off, but that would be impolite and people might stare so you smile tightly and keep your mouth closed. It is so polarizing to say people can only be a patient or a doctor, no in-between space, or shared community or feelings or beliefs. One or the other. All or nothing.

So I will stand up metaphorically on my chair (though, in reality, this involves me typing passionately at my computer) and declare that I am not just a patient, it is not black or white, not every person with a medical issue experiences anxiety or depression or is incapacitated crying ‘why me’ in a corner with a sappy violin playing in the background. Most of us are strong and capable and fighting – we’re advocates and whole, real, amazing people. We are every color imaginable, because black and white is boring, we are everything because to be all or nothing is belittling and untrue. We are loud, and we will never be quiet.

Jennie