ImproveCareNow noel_jacobs


Making time for everything else.

What do you fit into your average day? Meals, school, sports, work, music, time with friends, gaming, talking on your phone? Have I left out 5 or 20 other things on your list? If you’re like many teens I have met, the idea of adding even one more thing to an already jam-packed day isn’t necessarily a happy thought. In fact, you’re probably hoping for a few less things to do, and maybe simply looking forward to getting some extra sleep this coming weekend!


A little experiment in drinking

So, a few weeks ago, at the Spring Community Conference, I ran an experiment (with a little help from my friends). The goal was to get conference-goers to commit to 24 hours of experiencing one – single – lifestyle change that some patients with IBD face when trying to get their guts to “quiet down.”  I invited them (after doing it myself) to replace their daily meals with liquid nutrition, while continuing with business as usual (attending a professional conference, where many were looking forward to a nice meal with their colleagues and friends on Friday evening). Further, I challenged them to spend meal and snack times interacting with others at the conference, who I like to refer to as “eaters.”


Mindfulness Based Cognitive Therapy and pediatric IBD

Did you catch the article in HuffPost Health News about a large-scale comparison between the efficacy of Mindfulness Based Cognitive Therapy (MBCT) and anti-depressants?

This area, MBCT, is a growing interest of mine and I’m hoping to attend some trainings on it. I have informal training on mindfulness and use it myself, to great benefit! Here’s what I would say to someone else…


Some Time With My (Gutless) Friend

Flat Jennie poses for a picture with Noel Jacobs, clinical psychologist and host, at OU Children's in Oklahoma CityI had the pleasure of picking up a friend at the airport a few months ago. She had flown in, carefree and light on luggage (literally one 5 X 7 envelope contained everything she brought, including her bedding), to spend some time with me, my curious wife, and my even-more-curious daughters.Flat Jennie travels in style. She arrives in a brightly colored envelope with medical history and PAC business cards. She had also come to root around in my office and make new friends at the hospital where I work – OU Children’s. I loved showing her my cool office, the gizmos we have to help our patients learn and have a good time, and the terrific staff and providers that see our patients on a regular basis.

 

Flat Jennie was created by friends of Sami Kennedy, as a joke for the real Jennie David. I was amazed to see, when I picked her up, that she was wide-eyed and ready to go. She had her arms up, food and drink in hand, and was ready for anything! Her spirit was catching; my daughters were immediately enthralled and showed her around our house, where she stayed at night, after going with me to the hospital each day.

 

A few problems occurred during our time together. You Flat Jennie just loves Twizzlerssee, Flat Jennie really likes candy. In fact, to help her feel at home I gave her all-candy for first meal with us. This of course caused problems with my daughters, who are 8 and would really like to have Twizzlers instead of green beans too! In the end, they understood and tolerated these seemingly unfair rules, because they know each person has their own particular blessings (having a fully functioning GI tract) and burdens (having to eat veggies). As you may know, Flat Jennie is the brain child of Sami Kennedy’s friends who made her for the real Jennie (Jennie David) as a joke. Flat Jennie is a laminated ‘mini-me’ of Jennie, complete with GI story and dietary idiosyncrasies. Flat Jennie was treated graciously and sparked great conversations with my daughters and wife, as well as some of our patients. One daughter had Flat Jennie ‘sleep’ on her bedside table and even checked during the night to see if her eyes stayed open (though I think she just wanted an excuse to stay up with our new friend).

 

Flat Jennie was my daily companion for a couple of weeks. As a patient-ambassador in our clinic she spent her time learning how our hospital takes care of patients with IBD, and seeing what my city has to offer children and families living with Crohn’s and colitis. And I, through Flat Jennie’s eyes, became aware of things that I had not  previously considered.

 

Flat Jennie and Noel Jacobs enact a patient encounter at the GI clinic at OU Children'sI put Flat Jennie through her paces, carrying out an OU Children’s office visit with her. And she put me through my paces too, challenging me to experience things I had not first-hand: check-in, paperwork, playing our iPad game Emma, talking about her quality of life and activity, having her wait in our (beautiful, but still clearly medical) patient rooms to see PAs, a dietician, a psychologist and a physician – we did it all. Taking it all in through her perspective, I did this for the first time.

 

Flat Jennie’s perky persona, complete with hot tea and cupcake, represents to me the hopeful and adaptive side of our GI patients struggling with chronic issues that set them apart from others. My laminated friend is coping; she is seeking the best life has to offer and trying to have fun in the process. My patients who met her enjoyed that; she is a reminder that there are things, like cupcakes, on which we can choose to spend Flat Jennie learns about the GI tract with Dr. John Grunow at Oklahoma University Children's our energy and thoughts. However, Flat Jennie still had to endure check-in, waiting in the room to be questioned and prodded, being reminded by her guest physician (Dr. John Grunow, one of the nicest physicians you’ll ever chance to meet) that she really needed to study the GI tract a little more (Now, I know what you’re saying – she has had some of her insides removed so why does she need to know it ALL?).

 

I believe the medical team was warm, friendly and even went out of their way to give her a pleasant experience, but nevertheless – it wasn’t a day playing in the Zone or on the 6th floor atrium garden (or going to the water park or riding a roller coaster at a great amusement park). Flat Jennie had to think, at least for a while, about something that will never go away and will, most definitely, interrupt her life at future points. It does us as providers a mountain of good to be reminded of this, to actively appreciate the perspective of our patients. They visit us during our workday, and we listen, talk, plan, and move forward together. But Flat Jennie goes home with the difficulties she talked about while (most of us) don’t. We serve her, and every child, better when we take the time to hold our focus, at least for a moment, on what that life is like, so we can help her make the most of it.

 

Thank you, Flat Jennie, for giving me an important perspective (and a fun time showing you the best of Oklahoma City and OU Children’s). All of us here at OU wish you well on your journeys through other clinics in other fun cities!

 

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You can follow @Flat_Jennie on Twitter to keep up with her latest adventures!


Sitting In It

Or "The Crystal Ball Method of Informed Consent"

Why didn’t I know how hard this was going to be?  When is it going to get better? Will it? Is it even worth continuing?’  I don’t know how much longer I can keep going, especially when I hear there isn’t an answer to this yet; my pain isn’t going away!’  As a child I felt that myself sometimes, and I think my patients feel that way sometimes, too.

 


To Nudge or to Push

Mother to teenage son:  “Hey, have you taken your medicine yet?”

Son (playing video games): “I will in a minute!”

Mom (wondering whether it’s worth the fight):  “You know, you’re gonna move out in a few years and you’re going to have be able to do this without me telling you.  And you know you don’t want flare-ups if you can help it!”

Son: “Nope, you’ll have an alarm on your phone and you’ll just call me and keep nagging until I take it.  Can’t wait for that!” [insert sarcasm]

And, end scene.   Mom walks offstage slowly, imagining how many more times she’ll ask before he takes it, if he’ll ever fully be in charge of his body, maybe whether he’ll be living on her couch at 40….

Is this exaggerated?  Maybe.  But I know many families in this boat.  They don’t have emergencies, and they get a clean “Good job, no problems this quarter!”  during the GI checkup. The child has a good quality of life when it comes to school and sports and social time and… it’s because mom stays in charge. She’s in charge of the medicine, the questions for the doctor, all the IBD knowledge necessary to lead a good life.  She’s running this show!

How much should we push our teens to start taking charge and showing responsibility?    It’s difficult.  If we push too little, they don’t grow up.  If we push too hard, they may retreat and we'll keep doing everything anyway “because someone has to.”  And by the way, ‘Why wasn’t that last flare and hospitalization enough to make him wake up and start doing something about it?’


Scary Stories

“Ill people are more than victims of disease or patients of medicine; they are wounded storytellers.  People tell stories to make sense of their suffering;  when they turn their diseases into stories, they find healing.”  James Swanton, in forward to The Wounded Storyteller:  Body, Illness, and Ethics (1997). 

 

My girls love when I tell them scary stories.  Not the overly gory kind, never with bad endings, but definitely the kind with those spooky “just around the corner” monsters that, in the end, are shrunk, tamed, made nice, or were never really monsters in the first place.  One time, I told them about a dare I took as a child, with a friend who lived on a street with a derelict mansion at the end of it.  My friend dared me to climb the wrought iron fence (you know, the kind with sharp points at the top) and go with him into the house.  Just when I had made it all the way up the fence, he yelled and told me to look in the window of the old parlor, not 20 feet from where I clung to sharp, pointy, iron.  A face, pale and gaunt, looked out at me.  I immediately screamed (my girls ask “like a girl?!” to which I reply that they are clearly being sexist in thinking only girls scream, well, so high-pitched). Then I fell, backwards, from the wrought iron fence, the sharp barb of the top guardpoint tearing my thumb wide open as I fell. Blood poured out of my thumb and there, less than 20 feet from me, still stood an old, empty house.

 

My girls stared wide-eyed, as I just let the story drop there.  “What, daddy!  What happened next?!” I smile and say “That’s all. I got what I came for.  We went home.  But I was different.”  They ask me why, and I explain that I was different because, even though I was scared, I tried; I climbed the fence, and I learned my lesson.  The face in the house, looking out at me, was my own.  It was a bright day, and my reflection had stared back at me, scared, pale, wide-eyed.  I frightened myself.

 

Sometimes telling stories of our worst moments is really a way to take power over them.  We don’t always know it at first.  But we have a chance to organize and put into words what happened, how we felt, how things ‘ended,’ and when we do we realize we’re still there and still standing, but now someone is beside us, listening, supporting. We’re changed by this,  in at least two ways.  First, we realize we don’t have to be alone in our suffering, powerless and scared.  Second, we have learned things; things about ourselves, our strengths, what we needed help to get through, and what we survived.  Much research is out there that supports this. Whole treatment programs, like childhood interventions for children who have been traumatized, are focused on the story of ‘what happened’, and actually teach children how to tell their story and take their power back.  Some writers make their whole living telling the stories of their own lives, in transformative ways.  They transform the world around them by helping others understand their struggles and triumphs.  And they transform themselves by organizing their own learning process, their own memories, and gaining power over them in the telling.

 

Tell your story.

 

Chelf, J., Deshler, A., Hillman, S., & Durazo-Arvizu, R. (2000).  Storytelling:  A strategy for living and coping with cancer.  Cancer Nursing, 23 (1), 1-5.

 

Clark, L.F. (1993).  Stress and the cognitive-conversational benefits of social interaction.  Journal of Social and Clinical Psychology, 12 (1), 25-55.

 

Ezzy D. (2000) Illness narratives: time, hope and HIV. Social Science and Medicine 50, 605617.


We Need a Bigger Boat

medication bottle, medication adherence, self management“But I took my medicine!” I hear this down the hall from a patient room.  I’ve heard this enough times in my work as a psychologist that I immediately begin to assume what is going on in the room.  In my mind I imagine the child down the hall is probably being told that labs came back showing little to no medication in her system, even though she’s on a considerable dose for a serious problem.  She has been admitted and she’s in bad shape; in lots of pain.  The medicine they wanted her to take could help her body get better, or at least keep her problem from getting worse.  And she is adamant she has been taking it, perhaps also implying she has been taking it every time she was supposed to take it.  And… the doctor or nurse talking to her doesn’t think she is being completely honest.  They shake their heads:  “But honey, numbers don’t lie.” She then looks to her mother for support but finds, instead, a disapproving look.

 

I could be wrong about my assumption (my daughters might say I am wrong more than I should be!). Nevertheless, this issue of medical non-adherence –failing to follow the medication, diet and lifestyle recommendations of a physician or medical team for a particular medical problem- is far more common than I wish it were.

 

I think, in moments like this, that a pediatric patient might see herself in a boat, all alone, supposedly in charge of making sure her boat doesn’t capsize, or sink, or head into a storm.  And that just isn’t fair.  There might be room in the boat for her mother and father, but if they are there, I am guessing there are times they are doing their own jobs on this boat.  There might even be a physician or a nurse; at times a psychologist might even hop aboard.  However, to the child, with the oars in her hands, she might be the only one feeling the full weight of responsibility for medical adherence.  And that is the heart of the problem.  She can’t do it alone.

 

I argue our young patients need to have boats that are big enough for a whole crew of supporters who are responsible for helping make sure they take all the medications; follow all the rules. In fact, I argue that those patients need not just to see, but to feel, that there are co-captains prepared to take the wheel, turn the oars, ready the sails, whatever is needed, because they are partners in the success of the boat (and the young boat-captain!). Yes, they need to know they are steering their own boat, and yes, as they get closer to adulthood they need to be able to do more and more of this on their own.  But how many children are ready to be captains for such a big job – keeping their bodies going when they have medical problems that are far greater than pimples or bad hair days; when not keeping good track of medications could mean, well, death?  We love our children.  And when I say ‘we’ I mean mothers, fathers, physicians, nurses, dieticians, social workers, pharmacists, psychologists, and many others.  I want us to find better ways to partner with our littlest captains, so they can grow into their jobs successfully, and without so many disapproving looks and avoidable hospital stays.  Who’s with me?


Of Villainous Eels and Amazing Strength (or “I’m sexy and I know it!”)

When my daughters were younger, they loved The Little Mermaid, or more specifically the Disney version, with beautiful Ariel, crazy-scary Ursula and, most saliently, her two evil, ever-present eels, Flotsam and Jetsam. In Disney's tale they are menacing, conniving, willing to terrorize beautiful and sweet creatures of the sea.  Our girls used to squeal and scream, grabbing my wife and me for safety whenever Flotsam and Jetsam showed up on screen.

 

Not unlike the evil sea-witch Ursula, IBD can bring its own kind of flotsam and jetsam into our patients' lives.  Sometimes it feels meaningless, like debris after a shipwreck, sometimes menacing and purposeful like Ursula's eels.  In his blog post "For a Girl Recently Diagnosed with Crohn's Disease,"' Bill Brenner describes his early course of Crohn's, his eventual return to full living, and what he calls the "mental byproducts" of IBD (http://billbrenner1970.wordpress.com/2012/05/03/for-a-girl-recently-diagnosed-with-crohns-disease/).  He is strong, and positive, although he pulls no punches for a little girl who needs to be prepared for what's ahead.  He also tells her he knows she'll be strong, too. The message is real, and it is beautiful.

 

All this is to say, there are physical and psychological “byproducts” (Bill’s apt term) of IBD.  Pain, bleeding, complicated medical and dietary regimens that sometimes feel like wishful thinking, these all create difficulties.  Children lose weight and may be teased for being “scrawny,” or become bloated and puffy from steroids and be teased again.  These horrors might happen right in the middle of adolescence, when physical appearance means so much socially.   Missing school for doctors’ visits, procedures and hospitalization (some of which may cause traumatic responses themselves) can bring a loss of social connectedness and peer support.   Weren't childhood and adolescence supposed to be about fun, about growth and accomplishment?

 

IBD can, in fact, induce a feeling of lost childhood. Depression, anxiety, body image problems, purposelessness and even suicidal thoughts can and sometimes do accompany this loss.  When this happens our young patients need understanding, safe space to openly feel and express their pain.  Sometimes they need counseling to help repair real psychological damage and build coping.

 

And yet there is other debris, like beautiful driftwood, that is found (or created!), picked up, and used in amazingly positive ways.  Our patients with IBD can be incredibly strong, like Bill.  They have really good moments and smile in their pictures.  A teenage patient recently responded on a survey, when asked about how IBD affects his appearance:  “I’m sexy and I know it!”

 

They often learn that pure, simple pleasure can be amazingly powerful, and in fact they may figure this out much earlier than their friends who don't have such daily challenges.  They may have less social time but many develop tough, tight-knit friendships that are much more healthy and supportive than many of their schoolmates. They might know the true value of precious things better, and earlier.  They sometimes appear to be "old souls"- as if the negative debris of IBD helped them develop wisdom, purpose and inner quietness faster.  Flotsam and Jetsam don’t always win.  Love, support, a sense of humor, and –sometimes – help from a psychologist, rescue them from the eels and help them craft their own future.


Story of Self | Noel Jacobs

Noel Jacobs, PhD Noel Jacobs, PhD | University of Oklahoma Health Sciences Center

From the C3N website comes a great quote:

 

“people who lack the power to shape their life course in significant ways are less likely to believe they can take control of their health, and thus less likely to engage in health-promoting behaviors" (Bandura, 1996).

 

My mother said that when I was in first grade she knew I would be a psychologist.

 

I came home from school one day, excited to have my first grade pictures!  Remember those big sheets that you had to painstakingly cut into little squares?  I was proud of my pictures and couldn’t wait to pass them out.

 

Okay, so fast forward with me 19 years.  I have been in college five years… switched majors twice, taken two pre-professional tests, and have landed a spot in graduate school - in clinical psychology.  My mother takes my face in her hands, smiles, and says "I really always knew this was what you would do. Remember those first grade pictures?"  She goes to her dresser, pulls out a leather wallet, and removes a picture from it.  It is of me, at age 6, smiling into the camera.  “Flip it over,” she says.   I turn over the picture and, there on the back, in big purple magic marker letters are the words “If you’re feeling blue, call me - ________.”  I had given my phone number, with that message, to all my friends and many adult friends of our family, in first grade.

 

I guess I have loved and felt moved to try to help hurting people for a long time.  I came to this type of work, helping children and families touched by chronic medical problems and the difficulties they can cause, through my work in graduate school and then, later, in consultation and intervention work through my developing practice.  One of my favorite things is to help children discover the strengths and abilities they already have, and help them and their families put those strengths to work improving other aspects of their lives.  Children with IBD aren’t broken, nor do they need to feel diminished in their ability to live a “normal life.”  In my experience nobody lives a normal life; we all live extraordinary lives with both difficult challenges and triumphant successes.  What I love most about helping children with chronic illness, though, is that regardless of their at times significant traumas and daily problems, they’re still trying to find something to smile about.

 

There is a joke about our outlook in difficult situations.  Two children whose parents have volunteered them for research are taken into separate rooms.  The researcher tells his students,”These two children are helping us test whether optimism and pessimism are permanent attitudes in people.” The children are then placed in rooms.  The more negative child is placed in a room full of beautiful toys, the more positive child in a room full of horse manure.  An hour later the researchers return.  The room once full of beautiful playthings now has broken toy debris and a child, sullen, sits in the middle of the room, crying.  In the other room horse manure is flying everywhere as a little boy moves through it, eyes open and full of wonder.  The lead researcher, bewildered, opens the door and says “Billy? What are you doing?”  To which the boy replies, “I just knew that with all this poop, there must be a pony in here somewhere!”

 

I believe that, although both optimism and pessimism can be persistent, pessimism doesn’t have to be permanent.  Children who feel hurt or scared can feel hopeful again if we give them support and help them find and use their own tools.  Our patients with IBD, and their families, are amazing and strong, although they don’t always feel like it.  They need and deserve community, hope, and the realization that together, they can accomplish great things and have fun along the way.  I believe in them, I believe in the benefits of programs like ImproveCareNow, and I’m thrilled to be a part of this community.


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