NHBPM #3: Building Networks

Today was our 2nd day at the CURED patient education conference and we heard from a slew of medical professionals, patients, and parents. Steph and I presented to the adult patients about quality of life and parents about caregiver stress. I really enjoy speaking at patient events because it brings all of the work that we do in academia to those who can truly benefit. As we know, knowledge is power. But from our presentations it became very apparent that there is so much more that needs to be done, on all fronts, but especially in the psychosocial realm.

Something basic that needs to be done is to compile a list of mental health professionals who have experience with and knowledge for working with adults, kids and families affected by EGIDs. And make this list readily available to patients and parents so if they decide they can use some help, they can feel comfortable that who they're reaching out to will have at least heard of (and can pronounce) Eosinophilic GI disorders and have some background in helping these clients.

We realize that EGID is a very small niche in the bigger context of chronic illness...

So I'm starting with if you are a therapist, or know a therapist who has expertise in working with people living with chronic medical illness, let us know.

Even better, if you are or know a therapist who has experience working with chronic digestive illness, please tell us.

And if you are or know a therapist with EGID experience, please please reach out to us.

It would be great if we could have names in every state, ideally in multiple parts of the state. This may be a lofty goal, but we have to believe that they're (you're) out there.

So You Have IBD During a Pandemic

Hey! What's going on? Been pretty boring over here in Chicago. Ok I don't need to elaborate on what the hell is going on in the world. We are being bombarded with information - some accurate, a lot inaccurate - about this pandemic. It's very easy to become completely overwhelmed by it all. We've been forced, pretty damn quickly, to completely overhaul our way of life for the greater good. To reduce the strain on our healthcare system of the sick and dying. And us humans are generally bad with rapid, monumental change that we really don't have a lot of say in. Our little reptilian brains do what they're supposed to do (prime us for fight or flight or freeze) but our advanced "thinking" parts of our brain have to interject with all sorts of unhelpful thoughts, thereby sending some of us off the rails. Before we start, turn off the news. Seriously. In the days following 9-11 we found people who consumed more 24-hour news channel information were mor

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This past Saturday, Tiffany and I had the honor of speaking at the United Ostomy Associations of America's Regional Midwest conference. I was assigned the task of speaking to the patients, and Tiffany addressed the partners or caregivers. I wanted to share with you some of the highlights from my talk. I only had an hour for my session, and with about 100 people in the room, it was not nearly enough time. I love bullet points, so here you go: We are all different! Every ostomate is different and not one size fits all for the emotional/mental aspect either. Who had months to talk about an ostomy and weigh pros/cons? Who was this a more sudden decision for? Who had cancer? Who had IBD? Something else? Who had an ileostomy? colostomy? urostomy? Who has a temporary? Permanent? Multiple temporaries? What age where you when you got your ostomy? Under 20, 20s, 30s, 40s, 50s, 60+ Who was single when they got their ostomy? With a serious partner when they had it? Some find a stom

IBD & Medical Trauma

Medical trauma is such an under-recognized issue for the chronnically ill. It's a hard topic to talk about because it can seem like we are pointing fingers at healthcare workers. Maybe that's why there are only, now, 4 studies on the topic in patients with inflammatory bowel disease (IBD). If you are someone who treats people with IBD please know I am not here to demonize or criticize. I am both a patient and a GI psychologist. I know the medical system from both sides. I know how messed up and broken it is. But ignoring this or rationalizing it away as only affecting a few folks is wrong. So let's talk about it. Post-traumatic stress (PTS) is the term we use for medical trauma due to technicalities in the Diagnostic and Statistical Manual for Mental Disorders (DSM-5) for post-traumatic stress disorder (PTSD). PTS can be less severe that full on PTSD, or it can be full on PTSD. Regardless, the symptoms are identical: Feeling hypervigilant/on-edge (increased

Mind Your Body

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