J tube

[sunshine44]

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.

 

[andyguitar]

and now black and blue marks are showing around the hole site

Needs looking at, but might just be bruising..infection would normally be red with a discharge.

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.

If your friend says that the pain ect is so bad they are thinking of having the J-Tube removed then they might get taken seriously.

 

[sunshine44]

Certainly possibly but given it’s been an open wound since 2019, with so many irritations and issues due to bloating causing bleeding issues and occasional infections… it seems the pain is not tolerable anymore. His last dr also said that it could be infected and they weren’t willing to try a pain reliever until that avenue was explored more. Sad that dr wasn’t willing to explore the infection angle more, yet not surprised.

Unfortunately, they have begged for help quite a bit from multiple drs now about how this isn’t sustainable and not many solutions are being presented. It’s hardly surprising given he was once at 87 lbs and they didn’t want to give him a feeding tube. With restricted fluid intake. So, he’s basically battling the same system and trying to convince them, yet again, something isn’t right.

 

[Rufous McKinney]

Are j-tubes permanent?

Are they ever removed and do people manage to get their body working more correctly?

How would you know if your body is able to work more correctly, but the j-tube is there, bypassing the stomach I presume.

Very concerning....

 

[alivenotkicking]

I'd like to preface my answer by saying that although I've had a peg-j (gastrostomy) tube for 3.5 years and have some experience with it, *I'm not a doctor*, so I couldn't possibly give out medical advice.

First, is there an external skin laceration, or is the blood coming from the inside? If it's the former, most tube models I know of have a silicone ring that's supposed to prevent the tube from moving around, but its lower edge tends to rub against the skin, and over time, it can cause a nasty, painful wound. Also, at the insertion site, it's extremely common for granulomas to appear, and if left untreated, can become an open wound. If that's your friend's case, then in both cases, a clinician should be able to treat the most urgent symptoms and help work out a continuous treatment to keep those issues at bay in the future.

If, however, it's on the inside, then it could be possible that the tube has slipped out of the stomach/jejunum, which also hurts like hell when the tube moves. In such case, I think a gastroenterologist could at least request a CT scan or do an endoscopy to assess it.

You've mentioned that aside from feeling bloated, they have had diarrhea from the feeding. Do you know if they're able to keep control the of rate of diet infusion? In my own experience, that usually happens if the diet and/or hydration runs too fast, so it might be worth trying to slow it down somewhat.

About the TPN, as far as I know, it's fairly expensive and prone to infection, at least in the long run, but if your friend is malnourished and dehydrated, then I guess it's worth giving it a shot, at least until the issues with their j-tube are resolved.

Then again, these are just based on my own experience and your friend's mileage may vary, so take my post with a pinch (or a handful...) of salt.

 

[sunshine44]

I'd like to preface my answer by saying that although I've had a peg-j (gastrostomy) tube for 3.5 years and have some experience with it, *I'm not a doctor*, so I couldn't possibly give out medical advice.

First, is there an external skin laceration, or is the blood coming from the inside? If it's the former, most tube models I know of have a silicone ring that's supposed to prevent the tube from moving around, but its lower edge tends to rub against the skin, and over time, it can cause a nasty, painful wound. Also, at the insertion site, it's extremely common for granulomas to appear, and if left untreated, can become an open wound. If that's your friend's case, then in both cases, a clinician should be able to treat the most urgent symptoms and help work out a continuous treatment to keep those issues at bay in the future.

If, however, it's on the inside, then it could be possible that the tube has slipped out of the stomach/jejunum, which also hurts like hell when the tube moves. In such case, I think a gastroenterologist could at least request a CT scan or do an endoscopy to assess it.

You've mentioned that aside from feeling bloated, they have had diarrhea from the feeding. Do you know if they're able to keep control the of rate of diet infusion? In my own experience, that usually happens if the diet and/or hydration runs too fast, so it might be worth trying to slow it down somewhat.

About the TPN, as far as I know, it's fairly expensive and prone to infection, at least in the long run, but if your friend is malnourished and dehydrated, then I guess it's worth giving it a shot, at least until the issues with their j-tube are resolved.

Then again, these are just based on my own experience and your friend's mileage may vary, so take my post with a pinch (or a handful...) of salt.

Thank you so much! Very helpful 😀

 

[kangaSue]

Pressure necrosis of the abdominal wall can be a possible complication of tube feeding but that is more the case with tubes that have internal and external bumpers as retention devices which can lead to developing a 'buried bumper', something that can also be a cause of significant pain from compression of nerves around the stoma site.
I'm in several Facebook groups where feeding tubes are a common factor though (have been for several years) and where J tubes more commonly tend to be anchored with a balloon internally, but they still can cause significant pain from compression of nerves around the stoma site against the external bumper. I can't say I've heard of anyone developing pressure necrosis from their feeding tube though, not even in those with a PEG-J developing buried bumper.
https://aspenjournals.onlinelibrary.wiley.com/doi/abs/10.1177/088453369701200603

 

[sunshine44]

@Howard

 

[sunshine44]

Pressure necrosis of the abdominal wall can be a possible complication of tube feeding but that is more the case with tubes that have internal and external bumpers as retention devices which can lead to developing a 'buried bumper', something that can also be a cause of significant pain from compression of nerves around the stoma site.
I'm in several Facebook groups where feeding tubes are a common factor though (have been for several years) and where J tubes more commonly tend to be anchored with a balloon internally, but they still can cause significant pain from compression of nerves around the stoma site against the external bumper. I can't say I've heard of anyone developing pressure necrosis from their feeding tube though, not even in those with a PEG-J developing buried bumper.
https://aspenjournals.onlinelibrary.wiley.com/doi/abs/10.1177/088453369701200603

Thank you so much. Very helpful.