Since I got the “epiphany” to do a graphic memoir based on my life with IBS, I have neglected my blog. Creating the book will not be a quick process (I certainly have enough material), and of all my attention has been focused on putting my thoughts together to achieve my goal. Once I decided on the size of the book (not so easy a decision…at least for me), researched the self-publishing field a bit and talked to a lot of people, I began my project. But my blog remained static, and I felt updates were necessary. I think I can integrate the two (they are related, after all). I also want to get some feedback from people out there who have their own thoughts and stories. I have already heard from many people who have similar issues. Re-naming IBS was always on my mind as I have always disliked that name. So, this is my first call for response from those out there who would care to share their ideas for replacing those inadequate initials (IBS) with something more evocative.
Hi from the GR group 🙂
As I’ve mentioned, I have RA and there is a movement to re-name it Rheumatoid Disease (RD) or Rheumatoid Autoimmune Disease (RAD) for the same reasons you mention. It’s often thought of as “just” arthritis with minor aches and pains and a few Tylenol are all that’s needed to feel better. Many people are surprised to learn it’s a disease that affects many organs and the entire body, not just the joints.
I suffer too with GI issues that have made my life even more miserable (slow motility, gastroparesis…). I don’t have a suggestion yet for a new name for IBS but I’ll give it some thought. I just wanted to say I do understand what it’s like to live with a disease that is so misunderstood and I support the idea of re-naming it.
I look forward to the book and the “teasers” here until it’s published!
Thank you for commenting, Jan. RA is so very different than osteoarthritis, and so misunderstood by the general public. Your whole immune system is affected, and it’s a whole other realm of misery. I agree renaming it might help that confusion and give it the proper gravitas it deserves.
I have some ideas for renaming IBS, and hope to hear some others.
By the way, I finallly decided on 6×9 for the book size. Thank you for your input on that decision. For some reason, that took me a long time to figure out!
A new name would be great!! Mine is so severe. I think I’m going to die from this.
How about agressive vindictive psycho colon!
AVPC…sounds serious. I love the psycho part!
I humbly suggest “My Doctor Doesn’t Know What the Heck is Wrong With Me-itis”
When I was diagnosed with IBS, I felt as though my GI doctor gave up looking for real answers. I wasn’t taken seriously after that, and was once sent home from the ER in the second-worst pain of my life, told that because I had been diagnosed with IBS, and I didn’t seem likely to die within the next few hours, I needed to “deal with it”. Eventually I figured out through research and friends that I had a soy sensitivity and a chronically inflamed gallbladder. If the health insurance companies allowed doctors to admit they don’t know what’s wrong, at least they’d be motivated to keep looking!
You are so right…they don’t know. Your name says it all;-)
An interesting discussion is definitely worth comment.
I believe that you should write more about this issue, it may not be a taboo subject but usually people do not discuss such subjects.
To the next! Cheers!!
I am definitely writing more…enough to fill a book! Thank you for your comment.