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Does anyone suffer from mitochrondrial disease? My daughter is having a cecestomy done. This problem can be related to mitochrondrial disease. Looking for others going through the same thing as us.
Theresa
hi theresa -
i'm 28 & in the process of undergoing a plethora of diagnostic testing for possible (probable?) mitochondiral disease. i don't have a cecestomy but do have a jejunostomy as well as a g-tube so am no stranger so major GI issues including ostomies & assorted tubes & the like. i'd be happy to chat with you if you're interested. how old is your daughter? she's certainly lucky to have a mom who is seeking out resources & support....you probably can't imagine it any other way but you have no idea how many mothers/ parents don't do what you're doing.
take care,
:-)melissa in ohio
Theresa ,
I have an 11 y.o. boy who had a cecostomy placed 2 1/2 yrs. ago for motility issues . We had experienced several yrs. of incontinence before resorting to this procedure but are glad we did . He does not have mitochondrial disease as far as we know and his cecostomy is a temporary measure to allow his bowel to heal .
I will be glad to chat to answer questions if you want to . ( I am also a nurse who works with developmentally disabled kids ) .
Lisa
Melissa,
What is it you have. I would love to chat with you.They believe that my fibromyalgia is actually mitocrondrial disease. I wish this site had a mitochrondrial support group. I am requesting you as a friend.
Theresa
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