Skip to main content

Who's my Partner?

With Valentines day just passed, those with chronic illness can be in a variety of different emotional states. Some may feel blessed to have such a great life partner, some blessed to have a variety of friends that lend support, and some may feel the loneliness and longing of having more support. Regardless of where you fall, as a community we can offer hope and encouragement to each other, as patients and providers.



I wanted to pass along a resource for those suffering with Inflammatory Bowel Diseases like Crohn's Disease and Ulcertaive Colitis. Its called CCFA Partners and it is a database of patients in the United States. Currently there are almost 13,000 patients registered, and almost 600 kids and teens registered as well. According to the CCFA, the goal of this initiative is to create an online registry to "help us obtain a better understanding of issues facing IBD patients, how patients are functioning, what they eat, and how they receive treatment in different areas of the country. We will use the CCFA Partners network to provide topics for patients to discuss with their physicians to improve their quality of life."



So far researchers have found some interesting results when studying these 13,000 patients. They have studied everything from risk factors for depression, sleep disturbances, female hormone fluctation, dietary factors, and much more! You can see the abstracts and manuscripts here. I really enjoyed reading about the dietary studies they did, as this is a hot topic that doctors tend to avoid speaking about. They surveyed 6,768 adults and found that foods that were listed by patients to improve symptoms were yogurt, rice and bananas. (Not a huge surprise for most of us IBDers out there). Foods found to worsen symptoms were non-leafy vegetabels, spicy foods, fruit, nuts, leafy vegetables, fried foods, milk, red meat, soda, popcorn, dairy, alcohol, high fiber foods, corn, fatty foods, seeds, coffee, and beans. You can look on their chart of UC vs. CD or disesase locations to see what various sub-groups reported as well. No firm conclusions were made for dietary recommendations, but it is helpful for new patients to have an idea of what kind of foods may end up causing issues at some point.


So who wants to be partners? Let's work together and promote research so we can all improve our quality of life together.

Popular posts from this blog

Game of Crohn's

There are 2 days left in 2017 and I've considered writing this blog post for most of the previous 363.  It's on a topic that nobody wants to talk about. Ever.

Let me start by saying Crohn's disease is a stigmatized disease.  A recent study found it's more stigmatized than HIV/AIDS and genital herpes among the general public.  And this topic, I think, takes that stigma and multiplies it by about 8.

Most people who know anything about IBD know it involves a few main issues:  diarrhea, abdominal pain, and sometimes blood in said diarrhea.  Because Crohn's is a giving disease, it also comes with a slew of other problems including joint pains, eye inflammation, skin inflammation, bone density loss, mind-numbing fatigue, and fuzzy toenails.

Ok maybe not that last one. 

Around 1/3 of us develop "fistulizing disease."  Or what I like to call body termites.  Fistulas aren't unique to IBD and can happen for other reasons, but IBD is a main source of the fistula…

The Long Shot

I don't even know where to begin as my head is still spinning with the news I received today.  So I'm just going to put it out into the ether:

Entyvio (vedolizumab), which I started for my Crohn's disease about 6 months ago, did what no other approach has:  cleared my eosinophilic esophagitis. 

But wait, isn't Entyvio a drug for inflammatory bowel disease?  Yes.

Is Eosinophilic Esophagitis a type of inflammatory bowel disease?  Nope.

Are IBD and EoE related at all?  As far as we know today, no.  There are very few overlapping cases.

So WTF happened?

Without getting into the biomechanics of a drug that's way over my pay grade in medical understanding, my gastroenterologist had a theory that the way Entyvio works would block the cascade of eosinophils (a part of your immune system, a type of white blood cell) through it's magical way of selectively keeping my immune system from attacking my digestive tract.

She was fucking right.

Since being diagnosed with EoE in ear…

Bubbles

I've been thinking a lot about how we live in an era of infinite access to infinite information (thanks, internet tubes!) yet we still fall into many of the well-established psychological laws, if we can call them that, of human behavior.  Don't worry, this isn't going to be some drawn out post on social psychology. Wikipedia is great for that.

I want to talk about bubbles.  Information bubbles, that is. And how each one of us lives in one to some extent, no matter how educated or enlightened we see ourselves to be. And even if we know we live in said bubble, it takes being shown information that directly conflicts with how you think things are, or should be, and the result is you feel kinda ew - the technical term for "ew" being cognitive dissonance.

I live in a bubble.

In my bubble is the world of academic medicine, academic health psychology, and a circle of psychologists dedicated to people living with chronic digestive illness.  I live in Chicago, a major me…