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Country: United States
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Looking for children with colostomy

Posted: Sun Feb 20, 2011 12:14 am
Hi, friends.  I have been enjoying the updated topics and reading through your posts and stories.  Though... I'm still looking for another family (families???) who have a boy born needing a permanent colostomy; or an adult male that was born needing a permanent colostomy... just to share stories that are similar and bounce questions/thoughts back and forth.  

Everyone's stories are so helpful knowing our challenges with bags/changing wafers, etc. And my heart rips when I read when some of our ostomy friends need prayers and special guidance ...  but I really want to meet someone who is also experiencing the challenges we have with our little guy (2 1/2 years old).

Anyone...?

Thanks, friends.

-Ryan's Mom
Posted: Sun Feb 20, 2011 6:53 am
  Hey i dont know if this is any help i am a long way away from you but australia has a magazine called OSTOMY AUSTRALIA I READ IT AT OUR ASSOC.it comes out quarterly and have read a few about little babys boys having these we stock ones with teddy bears sad but the pouches r cute there also is here that they tried to get me into after every operation Y O U young ostomates united sorry like to help more .maybe yes maybe no but i did read the mums story..ALWAYS READ THE BABY ONES SOME REASON..get in touch with these people or email check them out i live all the way here i found this so you never no darlz .goodluck ..mare....
  Past Member
Posted: Sun Feb 20, 2011 7:12 am
There are some excellent stories in Ostomy Australia for parents with children with ostomies.  I think you can download issues in PDF form on Google.

But if no-one is forthcoming on here Ryan's mom, have you tried the UOAA site (below link), I know there is a section on there for parents.  Good luck with finding some info, Ryan is beyond cute by the way!


https://www.ostomy.org/forum/index.php
Posted: Thu Mar 10, 2011 8:46 am
Hi, friends.  Thanks for the info on ostomy kids in the UK.  I might have to link there just to even get online connections as I have found literally no one with a young boy in the same situation as Ryan in the United States.  I know there are families (through connections from our doctors)... we ask the doctor to offer our phone number so they can call and chat (or even e-mail!).  No one calls us.  Very private families, I guess.  I tried UOAA (I am a membre) but, again, they couldn't confirm if any family was like ours and I couldn't afford the membership fee just to join, yet, another online support group when there are so many free.

Thanks, again, friends!  I'll keep searching.  -Ryan's mom
Posted: Fri Mar 11, 2011 2:12 am
Hi, not sure if this is any use but came across these this morning??

http://www.facebook.com/pages/Bad-Tummy-Foundation/239714250807

Hope so?

Love Rach xxx
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