When I grew up in the 1980’s, I was the only one with Crohn’s far and wide. It was not a very common disease for children (or it was not diagnosed very often, who knows?). The internet wasn’t around yet. The German DCCV e.V was around, but at the time only through print publication, and again, mostly for grown-ups. And while I did indeed feel lonely at times, I can see the good in this too- I was simply forcedRead more
Posts tagged: #communication
The ABC of IBD: “B” is for blood test
In the previous post, I was going on and on about how important blood tests are. I use the term “blood test” as a blanket term, because really, there are plenty of different blood tests, from doing bacteria cultures to testing your blood sugar level. Most of the time, you’ll get something called “Cbc and Auto Diff” (complete blood count and automated differential). It is a rather broad test that can screen for diseases, see if certain conditions like anemiaRead more
World IBD Day: In celebration of community
Throughout the day, I have posted about IBD, and IBD awareness- there are many blogs and foundations that provide support, education and connection among the IBD community. They give me ideas for blog posts, they give me feedback on blog posts, and while I am all about educating people about symptoms and treatments (and warn them of quacks), I think another aspect of the disease that often is underestimated is the loneliness that many people feel with it. And IRead more
Open Letter to Bill Davis of “Far from the Tree”
This week’s post is an open letter to Bill Davis, who in his video links Crohn’s Disease to all sorts of things. Read more
Microaggressions and IBD
“Crohn’s? Oh, that’s ok to have, it’s treatable.” “So and so has had kidney problems, you just have a dicky tummy” “You can’t feel that bad, if you are still wearing make-up” “But, you are so young! Isn’t RA only for grannies?” “You got a PhD and you have Crohn’s?” “But you look so good” If you suffer from IBD, these utterances probably sound familiar in one way or another. I will go ahead and call them microaggressions. The termRead more
10 Things to take to the Hospital with You
IBDers often are hospital frequent flyers. While I don’t keep a packed bag around, over the years, I have gotten a routine down, and so have my loved ones in case I am not able to pack my bag. Here is what I find essential to take to the hospital- for practical reasons and because I need them for my mental well-being (which is equally important). Update Oct 29: I have included feedback that I got from the members ofRead more
Travelling with IBD II – Carry- on and outfits
You booked your flight, you have planned your trip, you’ve packed your suitcase. Now for your carry-on. What: I prefer a backpack and a purse, small enough that I can put it in the backpack if necessary. I have never understood people with trolley’s for carry-on (exception, people with kids). What in the world is in there?! Most people with IBD suffer from back pain, often mild arthritis etc. So do your backpack research! About six years ago, I investedRead more
I heart colonoscopies- Tips and advice
There is no way around it: Colonoscopies are important. Even if you are not a Crohnie, don’t smoke, don’t have a family history of colon cancers, if you are older than fifty, you should have one every five years. A 2013 study in the New England Journal of Medicine found out that you can lower your risk of developing colo-rectal cancer by 40% through colonoscopies. How? Cancer doesn’t come overnight, and pre-cancerous cells or polyps can be found via colonoscopies.Read more
Putting yourself First
In the classical Bildungsroman, the hero undergoes several challenges and hurdles through the course of his (because there are too few heroines in classical Billdungsromans, and don’t get me started on dickens) life. They grow with each challenge and end up being this all around good person. Did I just describe 98.6% of all of Hollywood movies? I generally don’t subscribe to the life-is-a-Bildungsroman view. People don’t become better people by having stuff happening to them- otherwise I’d be allRead more
