Online Groups- the double-edged sword?

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

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

Being your own person

I recently read Sara Ringer’s post on dating a man with Crohn’s Disease. In the post, she elaborates on how, yes while her partner can relate to her Crohn’s, it’s not why she’s dating him. The piece really resonated with me, because it is something that I often see in the IBD community- letting your disease take over and define you. Of course, when you are in pain, running to the bathroom 40+ times a day, fighting with ill-fitting stomas,Read more