Need some advice

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New Member

Date Joined May 2010
Total Posts : 4
   Posted 2/28/2011 4:49 PM (GMT -6)   
HI i was wondering if anybody on here could give me some advice. My daughter is nine and has a colostomy and ACE stoma due to long term constipation we have failed many medicine trials and even with her ACE her colostomy barely functions.. her surgeons is reccomending a total colectomy but i am finding it hard to get my head round as she is so young, WE desparatley want to do the right thing but making the decision is so hard when she has already been through so much,
Many thanks

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 2/28/2011 10:33 PM (GMT -6)   
debbie1975~sorry I am no help with your daughter's situation. Have you posted on the Total Colectomy 2011.1 thread? You will find some wonderful people there with some first hand knowledge!

Good luck to you and your daughter.
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Veteran Member

Date Joined Mar 2008
Total Posts : 624
   Posted 3/1/2011 11:40 AM (GMT -6)   
I dont know why your surgeon kept the large bowel if it is not functioning ...   there have been mothers on here with similar issues with their children.  i know of one in particular whose child had  a total colectomy with ileostomy - getting rid of the large bowel is the way forward with constipation issues and an ileostomy is given for many reasons.  You will find help here for such problems. x
Karen 48 years old
1997: Diagnosed IBS
2003: Pelvic Floor repair
2006: STARR surgery for mucosal prolapse/Obstruction/diagnosed slow transit constipation
2007: Sigmoid resection-partial volvulus resulting in worsening of colonic inertia (cleared obstruction though)
March 2009: Total colectomy with ileorectal join and loop ileostomy
23 Sept 2010: Ileostomy reversal
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