When I was tagged by my friend to be part of the IBD Advocacy Tag, I was like, “OH, HELL YEAH!!”.
Not many people know what IBD is at the time of their diagnosis, and I had a lot of questions about Crohn’s Disease when I was first diagnosed, but there are some things that I wish I had known sooner.
One lesson I’ve learned about IBD is that our symptoms can often be very misleading, and they sometimes don’t correlate with what’s actually going on in our gut. This can pose several problems as a patient and for the GI treating us.
Hopefully, the title will make sense by the end of this post!
Despite all the wonderfully positive stories you might see on the news or on blogs about IBD’ers who’ve overcome personal obstacles, it probably wasn’t always easy for them. Many of us haven’t climbed over those obstacles yet, and continue to live a life of pain and suffering. Many IBD advocates have attempted to bring these issues to the forefront, but our message about the true challenges we face when living with Crohn’s and Ulcerative Colitis usually goes unnoticed by the general public. I hope to bring some of those challenges to light in this article.
Managing a chronic illness can be daunting. Keeping track of medication, medical history, a symptom diary, a food log, prescription receipts or important articles can get out of control pretty fast, so if you were to ask me for a single solution to keep this chaos in order, I’d tell you it’s Evernote. I don’t want the following post to sound like an ad; I just want to share with you how I’ve used this software to manage my Crohn’s Disease and my ostomy. I really, REALLY love Evernote!
IBD stands for Inflammatory Bowel Disease, yet a large percentage of us with IBD (estimated to be upwards of 40%) experience extraintestinal manifestations (symptoms outside of our gut). These symptoms can sometimes be as hard to deal with as the abdominal symptoms of IBD; for some, they’re even worse.
Since I frequent so many IBD forums, I often get to read about the experiences of newly diagnosed people, but one thing that struck me as odd was how many “veteran’s” with IBD had no idea that they could even have extraintestinal manifestations. Hopefully, this post will shed some light on the topic.