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

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.

A Brief Interlude – And an Alcatraz Bathroom

Posted on 22 April 2013 by nocolon33

Sounds like the opening of a joke, doesn’t it?

It’s not. I’m going to start with a brief interlude in which I brag about my kids. I will end with the tale of a bathroom.

Tinkerbell, Jedediah and Elly Mae each have some talent. Tink and Elly Mae each dance. Jedediah woke up one morning and wanted to act, and he’s got some chops.

Sela and I, together, have five left feet. The only person I know who has a voice worse than Sela does is me. So where they get this talent, we don’t know.

In the last week, we’ve been to a recital for Elly Mae’s dance team, an awards banquet for Tink’s dance team and several performances of Jed’s play.

Sela and I are extremely proud of each of them. They selected activities that were important to them, and they worked HARD and practiced. A lot. There are few things that have given me as much joy as a parent as seeing them get excited about an activity that they chose, as opposed to the requisite soccer, etc. that every kid is forced to try.

We’ll talk about Tinkerbell’s foray into horseback riding in some post in the future. No idea what that was all about.

As Buzz once said (and I’m paraphrasing), “To the bathroom, AND BEYOND!”

Jed’s play was at the Junior High School. Which is convenient because Jed’s a junior high student.

Being at the Junior High School necessitates going to the bathroom in a junior high school bathroom.

With me so far?

It shouldn’t surprise you to learn that boy’s junior high school bathrooms smell like junior high school boys. So I was put in a foul humor upon entering.

I’m also fairly convinced that the first casualty of school budget cuts was functional toilet paper. This stuff was the worst of the industrial bad. Wow. It was so bad that my butt audibly complained. Seriously.

Despite all of that, the worst part was the sink design. Picture this. Two side-by-side sinks. Not a problem. Where were the soap and paper towel dispensers? To the left of the sink on the left, of course. You couldn’t get to them from the sink on the right. You might as well have had one sink since only one was usable at one time.

Don’t give me any complaints about space constraints. There were options. A myriad of options. Between the sinks for the soap dispenser? Anyone? Anyone?

At least I only had to use the thing a few times. Jed’s gotta use it all the time.

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

My No Colon No Feels Good

Posted on 22 March 2013 by nocolon33

I’m having one of those days (following one of those nights).

A “my no colon no feels good” kind of night and day. Those of you with IBD and more complete insides know what I’m talking about, too.

I won’t bore you with the gory details. They’re gory. Kind of like the stomach flu (one way traffic—down only) on steroids.

It does present a conundrum, however, and this is something that I’ve pondered for over 15 years.

Is this really a “my no colon no feels good” thing? You know, something special to people with my constitution? Or, is this a garden variety bug or “I ate something that didn’t agree with me” thing? Something that affects even the commoners?

Allow me to get philosophical for a moment. I figure I’m actually getting “biological,” as opposed to “philosophical,” but I also figure that any person can strive to say something philosophical without sounding like a total idiot, but when the same person tries to say something grounded in actual science, well, he/she could be wrong and actually sound moronic.

I’m thinking that taking the colon out of the equation screws up the equilibrium from mouth to anus, so to speak. Messes with the order of things, you might say. Leading me to this question:

Excluding pouchitis (clearly a no colon phenomena), would someone with no colon experience the same intestinal issues under the same conditions and the same diet as someone with a colon? In other words, is the “my no colon no feels good” situation a function of my “no colon” or just “no feels good”?

Let me insert some real life data:

FACT: I haven’t vomited since Day 3 after my second surgery (despite my system’s best efforts following the Epcot Center “Mission Space” Incident of 2005).
FACT: I haven’t had the stomach flu since I became no colon.
FACT: I have never suffered from constipation since I became no colon.
FACT: I sometimes wear white socks with dark shoes and dark socks with white shoes, being forced to suffer endless ridicule from Sela, Tinkerbell and Elly Mae (Jed just shakes his head).

Why am I asking? Because if my “no colon no feels good” is just your regular, run of the mill bug or “I ate something that didn’t agree with me” thing, “traditional” “medicine” (like how I used separate quotation marks?) like Pepto Bismol, Alka Seltzer, antacids, etc. should make me feel better, right?

But if this is some foreign situation, an affliction for which there is virtually no market (who is going to spend billions and billions to design a medication for the “no colon no feels good”?), then I am, well, out of luck

Feel free to comment or email me with your concern over my condition (he said in a shameless grab for sympathy).