LOOP is making impressions in the IBD community!

So far, in 2019, 50 stories have been posted to the blog by 40 ICN community members, including clinicians, researchers, coordinators, parents, patients, psychosocial professionals, and ICN staff & leaders. While the perspectives and the topics vary – as you can see in the tag cloud below – one of the common threads is that they are written by real people, talking about real life with IBD.

We are thankful for each and every one of these stories and hope that by sharing them we continue to do our part to raise awareness of these often-invisible illnesses and help encourage more people to get connected and talk about IBD.

Without further ado, here are the top 10 most read posts of 2019!

My patients sometimes like to discuss the “hassles” of preparing to enter the adult world and manage their own health. I run a transition education and co-management program through my center’s IBD clinic, where I try to help parents and patients begin to shift the daily regimen of medical behaviors from parent, to parent-patient, eventually to patient management with support. Part of our time together just includes talking out loud about the best and worst of growing up and launching into the world as young adults.

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!

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.”

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…

I 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. 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.

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.

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.

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?’

“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. 

“But I took my medicine!”

I hear this down the hall from a patient room. I’ve heard this so many 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.