Following up

Tonight I woke up in the middle of the night. Don't really remember why, but I did. In an attempt to stay in bed and fall back asleep, without disturbing my sleeping wife, I decided to check my twitter feed and my Facebook from my phone. (What can I say, I'm a tech geek and I love being constantly connected to the world... Maybe that's why I am great at what I do... LOL) When I checked my twitter feed, I noticed that my last post got the attention of the people that help run uncoverostomy.com. At first, this worried me as I don't like being critical, but I think that constructive criticism is vital to development.

To my surprise, most all the comments seem to show me that the post was taken as it was intended, as suggestions on how to improve on a good idea. I am pleased that they saw it this way, and am completely open to helping out in any way that I can.

But one comment left on the Uncover Ostomy facebook page got me thinking some more and is causing me to write this entry at 3:30am.

One user (I will not use their name as thy are not a "friend" and without their permission I would feel bad writing it here) commented (I am paraphrasing from the post, these are not the users actual words) that being a UC sufferer, they are concerned about the possible need for an ostomy in the future. They go on to say that they think Jess's work in showing that you can get the sexy back after surgery is great and that they would love to learn how to conceal the bag in socially appropriate situations to be able to wear that pencil dress or tailored shirt without having their bag showing through. They also go on to say that not all ostomates may share my views on awareness, especially so recently post op. (I'm only 10 weeks post op)

I COULDN'T AGREE MORE with all of that!!! And I think there is a great idea in there too!

I spend a lot of time on the interwebs (like I said, I'm a tech geek) and one thing that frustrates me is that it was almost impossible to find ALL the information that I desired about Ostomies and what to expect in my life post op in one place. Yes, there are multiple websites with medical information (UOAA.org was great for me in this aspect) and others with more social information (I really haven found one that I like for this) but I found it impossible to get all the information I desired in one place. I will tell you that I find Discussion boards a waste of time. Half the time the thread leads in a direction it originally wasn't intended and they are also cluttered with other peoples conversations that don't pertain to the topic at hand. It takes way too long to filter through the junk. To find the jewel of information that you really wanted in the first place.

This leads me to the Idea that this Facebook user gave me.

I think that what we need is what I, for lack of a better term, will call a panel blog. A site, co-authored by medical professionals (surgeons, WOCN's, GI's, ect...), Members of the, as I call them, awareness societies (UOAA, CCFA, IDEAS, GYGIG, ect...) And everyday people living with ostomies. (at least 1 male and 1 female from every 10yr age gap) Their job will to be answer any and all questions presented. (at launch, definitely start with the FAQ's and go from there) Include Bio's of each of the contributing members so people know where the information is coming from. Have the site well indexed and searchable. Give people that wish to participate a forum to add their 2 cents without detracting from the information provided. Give ostomates a place on the interwebs to get all the information they desire in one place. And one other ciritcal aspect to this site, the authors have to be completely candid about any question that is presented. (The information I desired the most was the information I couldn't find ANYWHERE on the internet and finally had to ask a fellow ostomate who was willing to be candid with me.)

Besides, if its a joint venture, a lot of Non Profits could save a lot of money on site maintenance and server costs while reducing clutter on their own sites

We absolutely need to help each other out! We need to support each other before we can bring true awareness to the masses.

Please, any and all comments about anything that I have written is greatly encouraged! Some of the best ideas come from people being constructively critical of other peoples work.

Love, Peace, Chicken Grease!
-D

P.S. I know I am writing this after the previous post, but since this one doesn't really make sense unless you have read the other, I put it underneath.
Sent via BlackBerry from T-Mobile