You see, I've become very active in the Crohn's and Colitis Foundation of America in Orange County. I'm on the volunteer leadership board and help co-facilitate a support group. It has been a great way for me to take control over some things this disease had tried to take away and I feel like I'm paying it forward.
My mission continues to be to ensure others with IBD do not have to feel alone in their fight.
Anywho, I've struggled with even putting this on here, because as much as I love to chat and speak in public, I do NOT like to toot my own horn or receive personal attention of that nature. And I don't participate in any of these things for recognition of any kind. But I have to see that it's in the name of spreading awareness of Crohn's and Colitis and the work of CCFA.
And in continuation of that, I am humbled beyond words to let you all know that the CCFA has named me their Honored Hero at the Orange County walk in June!!! And although hero is too strong a word, I won't let them down in this great honor. You can read more about it here.
Which brings me back to the reporter coming on over. She was here to talk to me about the walk and the honor. I was happy to share my story in hopes that somebody might read it, connect with it and find hope in it.
The online article ran last week, with some horrifying photos of me and some factual errors as to the name of my pouch in the photo captions. But hey whatever it takes right.
But the actual print edition ran this past Saturday. And although it was weird to see myself in the paper, you won't believe it, but three people have contacted me through my blog email address. Letting me know they've had the disease for years, that they were excited to see a real person sharing their story and to connect.
I'm flabbergasted! I find it completely incredible that an article in the local paper has made an impact in our community already and I really am so proud to be a part of this. My mission is working.
My faith in the printed newspaper was restored too. It really does work and people still read.
So if you're a new reader that found me through the article, "Hi and welcome!" Don't be shy, leave a comment if you feel inclined. I'm so happy to e-meet you all.
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9 comments:
That's great Al! You will always be our HERO!! You DO deserve that title. Can't wait to support you at the walk. And if you need some more PR to spread the word - I'll get my peeps right on that. :)
Read the article in Saturday's Register.
I have had a Kock pouch for 29+ years (1982). Had UC at age 21.
Recently retired after 31 years with same company in Orange County and been married going on 39 years (yes, to the same wonderful woman).
For me the Kock pouch alternative has worked very well. Had one revision of the pouch after 1st 15 years (performed at St. Joe's Hospital in Orange), but otherwise no complications.
The pouch has allowed me to live a very normal & good life to date.
I hope my history can give some greater hope for others.
Keep up the good work.
Glenn - Orange County
Hi Allison very proud of you (my kp daughter!).
Glenn and I share sentiments....
If you are reading this Glenn I have had my kp in 1980 and a few revisions but going strong since 1983. I wish a surgeon at St Joes still performe it - who was your surgeon?.
Allison...hopefully this will inspire furture surgeons to take notice and make the kp a valued ostomy especially for us that loose the rectum and/or had failed jpouches. Keep up the good work! Luv ya! Janice
Janice,
Wow! Didn't think anyone preceded me with the KP.
My original surgeon was Dr Steven Wilson working out of St Judes in Fullerton with the Surgery Group. Not sure if he is still around, but he was very good.
My revision was done by Dr Theodore Coutsoftides out of St Joes. He was also excellent. When the revision didn't go well for the existing location of the stoma, he moved it to the other side of my abdomen during the surgery (good move ...literally). The revision has been great since then (about 14 years now).
I too hope that someone can inspire the younger surgeons to keep the KP in the repertoire.
Hi Glenn, Dr Teddy is still at St Joes but not performing kp's. He is awesome and wish he'd continue. But, I know he'd do a valve redo if needed. He just repaired an anal prob back in 3/10 and I just needed a hyster and he was intouch with that surgeon.
We have a group of kpers get together that live in the area. I never met another one until I hooked up via the jpouch.org and found Allison and many others. my email is jmartinhome@yahoo.com if you're interested in me adding you to our invite list.
Allison, great work hooking up more kp'rs! I felt so ilsolated until 5/08 and now can't believe we all have each other.
oh and we have a facebook group Koch (Kock) Pouchers United if you do the facebook thing!https://www.facebook.com/#!/home.php?sk=group_30300094937&ap=1
Hope to meet you at the Take Steps Walk in Jun! I'm not on Allison's team but walk with them! My team is IBDivas...small but hopefully growing!
Hi Allison:
Talked with Carol this a.m. and she told us about you being honored. Good for you. We will always support your good fight and keep you in our prayers.
Don and Kathy
Thank you for your feed back!
So excited to see everyone connecting here!
Jen and Kathy, thanks as always for being such big supporters of me and the hubs. Love you guys.
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