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  1. #1
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    Default Colostomy information

    Hi...
    My 2yr old Dd has been diagnosed with a rare genetic syndrome and we finally recieved the date for her 1st surgery which will be a colostomy. She will be having spinal surgery a month after as she has a tethered cord which requires fixing and presacral masses that need to be extracted. Iv been completely level headed about the whole situation however having recieved the confirmation has definately stirred up the nerves and anxiety. I am just wondering if anyone else has been through a colostomy with their child and if they have any information or advise regarding care after the procedure?? Also wondering if anyone has been through such major surgeries so close together?? Any advise would be very much appreciated xx

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    Hi. Sorry to read about your child's illness.
    I don't have experience with colostomy.
    But my daughter also has a rare genetic syndrome. So I know firsthand what dealing with that is like. My daughter has also had two heart surgeries and a cardiac catheter. .. she's scheduled for surgery next month for tonsils and adenoids.
    Hugs. Knowing that it's necessary and the right thing is so hard. It's awful to see our kids go through these times.
    Feel free to chat with me if I can help in any way. Xx

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    isaevette86  (14-11-2015)

  4. #3
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    What a little trooper!!! And a big well done to you!!! You sound like you have done an amazing job... its definately very scary... I hope everything goes well with you little one and she has a super speedy recovery... i think the worst part with it being rare is the lack of information and knowledge of outcomes through to adulthood...the waiting has been a killer and now its all happening at once i feel like although iv had all this time to prepared im just soooooo not prepared at all... definately wishing i could fast forward atm...thankyou for your support!!

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    Tamtam  (14-11-2015)

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    Default Colostomy information

    No advice, just sending best wishes.

    Although my dad did have a major surgery and had a colostomy bag for several months, then it was removed. His diet was quite strict because there were certain foods that cause issue with the stent. I'm sure they will tell you all about that, but I can imagine it will take some extra planning to find yummy and safe meals that appeal to a little one. Hope it all goes smoothly.

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    isaevette86  (14-11-2015)

  8. #5
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    Default Colostomy information

    Google Ostomy associations, you can contact the one in your state for advice and support.

    http://www.health.gov.au/internet/ma...tkhldrs-sa.htm

    This list might help, there's a children's one you can contact, they are based in Melbourne but I'm sure they could help with advice and support if you are not in Melbourne.

    Good luck with it, hope your LO recovers quickly
    Last edited by Pearlygirl; 14-11-2015 at 07:43.

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  10. #6
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    Quote Originally Posted by Pearlygirl View Post
    Google Ostomy associations, you can contact the one in your state for advice and support.

    http://www.health.gov.au/internet/ma...tkhldrs-sa.htm

    This list might help, there's a children's one you can contact, they are based in Melbourne but I'm sure they could help with advice and support if you are not in Melbourne.

    Good luck with it, hope your LO recovers quickly
    Thankyou so much for your help... most of the sites iv seen are american based so ill definately have a look at this tonight

  11. #7
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    Oblena is offline I've done it in public and I'll do it again - I don't care who sees!
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    I am part of a FB group for a condition which often results in colostomy. PM me xoxoxox Look on FB for your child's condition and colostomy groups or ostomy groups. There are a lot. The tethered cord often goes with things such as VACTERL, which I have.
    Last edited by Oblena; 14-11-2015 at 15:50.

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    isaevette86  (14-11-2015)

  13. #8
    Oblena's Avatar
    Oblena is offline I've done it in public and I'll do it again - I don't care who sees!
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    I've discussed this thread in the fb group and linked it, so hopefully some parents in Sydney will reply. X

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    isaevette86  (15-11-2015)


 

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