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I am from Kosovo.I have a daughter with CF 5 months old.
She was born with MI (mekonium ileus) and had her first surgery at two days old,and had ileostoma.
Second surgery was done after 4 months but there where some complications so she was operated two more times,So she had three surgeries within ten days,and now she has again ileostoma but not at the end of the small intestine.
Now she is 5 months,she takes all the therpy for CF(enzymes,antibiotic,adek-s,donperidon....)but she is dehidrating too much.Someone suggested me the refeeds into the stoma,but our doctor still didn't mentioned it.
So what do you think for refeeds?
I am interested to go somewhere abroad for the next surgery,but I don't know where to go.
Your daughter’s situation is clearly very challenging. It sounds to me like she is on all the right treatment and I agree with your doctor that re-feeding through the ileostomy has some risks. I have asked some colleagues who have informed me that rehydration via an ileostomy is sometimes beneficial in an emergency but not as a long term treatment. I would therefore support your doctors advice. In the UK Great Ormond Street Hospital (GOSH) is the national referral centre for pediatric diseases and take international referral- I would suggest your CF doctor considers a referral to a gastroenterologistin in GOSH.