UC to J-Pouch Story

Posts Tagged ‘inspiration’

Why you should maybe BLOG your story #1

Posted by Megan on June 14, 2008

Why are we asking for others to blog their story?  Because of the response we’ve gotten from others in similiar situations.  Not only helping others, but it helps us heal as well – I guess giving back to the community makes you feel good!

In March 2008 a 19 year old male, Adam posted on jpouch.org, we responded to his question which you can see the full thread here, Adam’s Encouraging Post.  But it was what Adam responded with that made us realize that telling your story can really help others:

Adam’s Encouraging Post stated : “Megan– you have no idea how much I appreciate you replying first..I would check out all your photos and information if I already havn’t done so atleast 10 times already. Out of the hundreds of doctors and nurses and information they give out to you, all of the posts on this forum, and all websites I could ever find…your photos and information helped me out and eased my mind the most!
I sat in the hotel room before my my first surgery and went through all of it over and over again..I said yes to my prom date and eased the minds of my parents by showing the pictures and information to them and the quick progess Mark made. I know many people have benefited from your Flickr and it inspired me to do my own. I have documented up to this point and after my 2nd step I plan on setting one up hoping it will help someone the way yours helped me. Thank you!”

You see, part of the reason we photographed and told Mark’s story was because we didn’t have a resource like this one to read before surgery, and it was what we would have liked so that things weren’t so unknown or fearfully based from the unknown.

Photo by: Sean dreilinger

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Posted in Ulcerative Colitis | Tagged: | 1 Comment »

Getting Healthy Story #2 – Chelsea

Posted by mark on June 7, 2008

Here is the recent post from a young woman who literally has been to hell and back with her UC, failed jpouch and now perm ileo.  The brilliant thing about this post is that in the face of all her health issues, she has found renewed health and she is a true inspiration story.   Let us explain, having a permanent ileostomy is worst case scenario for a “failed” j-pouch, and when you read things like this, it helps you to remember that a perm ileo will give you your life back.  

According to CCFA only:

“About eight to ten percent of patients will have pouch failure, which requires removal of the pouch and conversion to a permanent ileostomy.”

Posted in permanent ileostomy | Tagged: , , | 8 Comments »