sunshine44
Que sera sera
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- 1,166
Question, a friend with ME/CFS has a j tube but it’s been increasingly causing them strife past year or two. They have recently lost 30-40 lbs (when they had just stabilized weight in 2020) and now black and blue marks are showing around the hole site where there has been significant pain and bleeding and other issues for 2 years and bloating due to feed intolerances and many issues with this site.
They also have frequent diarrhea most days since October when some new medications were tried.
This person feels they are quickly sliding down hill and that, surprise, week after week, drs are doing nothing.
I am concerned based on their symptoms that there is possible necrosis or infection on other part of skin where feeding tube inserts. Their pain is extraordinary.
If you are on a j tube or have a loved one on a j tube, do you think that a tube replacement is called for here, in a new location? Or TPN until they are more stabilized?
And do you have any tips for dr lingo of how to get this persons situation taken urgently and seriously? They do have a primary care provider whom is coming to their residence on Tuesday.
Any *helpful* suggestions appreciated. Or connections to other me/cfs people with j tubes.
They also have frequent diarrhea most days since October when some new medications were tried.
This person feels they are quickly sliding down hill and that, surprise, week after week, drs are doing nothing.
I am concerned based on their symptoms that there is possible necrosis or infection on other part of skin where feeding tube inserts. Their pain is extraordinary.
If you are on a j tube or have a loved one on a j tube, do you think that a tube replacement is called for here, in a new location? Or TPN until they are more stabilized?
And do you have any tips for dr lingo of how to get this persons situation taken urgently and seriously? They do have a primary care provider whom is coming to their residence on Tuesday.
Any *helpful* suggestions appreciated. Or connections to other me/cfs people with j tubes.