J-tube pain

My daughter just had her third j-tube place in two months. this time there has been severe stabbing pain ever since it was placed. It is working for tube feeding. It is in place. If she sneezes, coughs, goes to get up, walks, basically movement makes it much worse. She never had this pain with the other tubes. Drs. tell her to deal with this, but.....

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My daughter had two j-tubes placed in her and each one caused a violent reaction. Now they are saying it is because she has a super hypersensitive stomach. They thought the first tube was hitting the wall of her small intestine and needed to be pulled back. She also had severe sharp pain. They finally pulled it after twenty four hours. The second one was worse. It was pulled within four hours. She just cannot take the j tubes. I would keep insisting that something is wrong. I have been fighting for my daughter for many weeks and we are now in our fourth hospital. She is still on TPN until someone can figure out how to help her.

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P.S. Good luck to you and your daughter. I hope she gets relief.

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i too have suffered severe stabbing, burning pain since have a pej tube 5 week ago, yes it has got a lot better but is still very painful and troublsome, Dr thinks its hit a nerve or pressing on a nerve. wish i had an answer, nerve pain i know can take ages to heal. i've to get more scans & trying various painkillers, this is my first tube so i've nothing to compare, but i admit its been a very very difficult time for me with the pain. How long has your daughter had the tube in? i so hope for both of us the pain will lessen with time. diane

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First two J- tubes - no pain. The first one came out while she was doing the tube feeding. She was watching TV - suddenly realized she was all wet and the when the nurse came and disconnected the tube it popped the rest of the way out. So a second tube with a balloon was placed in the same place and no problem. Then she got a urine infection and for some reason they pulled this tube although I still have no answer as to why. The 3rd tube immediately caused severe sharp burning pain. Over a week. Dr. is just pumping pain meds into her but she gets very sick with every pain med. Dr. is now saying this pain is associated with gastroparesis because gastroparesis causes pain. She has been in pain, but lived with it - but the pain with this tube is very different from her normal gastroparesis pain...... so frustrated. Just turned 23. No one in our area understands this. We went out of state for a diagnosis. Go back July 2nd for the pathology report. Trying to get her stable to get her there. Basically been in a hospital - total of three - the past 8 months.
I pray your pain gets better.

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Have had three jtube with alot of pain. My dr even though he doent know anything abpout gp and wont listen to my nutrionist prescriped fentehal patch it really helpssusan

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you will be wishing & wondering why oh why did they pull the 2nd tube, i really feel for your daughter, the pain is truely awful, takes your breathe away. i doubt is will be due to GP, i never had pain with GP and its only since i had the tube in. i really wished i'd never had it done but the alternative ?? well starve to death eh. stabbing burning pain is usually nerves, maybe the tube needs repositioned though i'd be loathed for my dr to go aywhere near mine just now. i too doped up with painkillers and lots of them dont work well for nerve pain. all i can say is that mine definitely has lessened in intensity & frequency, albeit still there, but thats 5 weeks now.
i so hope thats the case for your daughter, maybe it will just take time for nerves to heal. else you could ask about repositioning it. i live in hope. kind regards to you & our daughter. diane

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They refuse to reposition the tube. I may end up taking her to a 4th hospital. But - I will do what I have to do for my daughter. Sending prayers and best wishes your way, Diane.

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Those are my exact words to all the doctors we come in contact with. I WILL DO WHAT I HAVE TO DO FOR MY DAUGHTER!!!!. Of course they then call psychiatrist in to make sure I am not a crazy mother trying to keep her daughter ill. It has been an extremely difficult journey for the both of us with her illness. We have been to four hospitals. The one she is in now is at least letting her stay on dilaudid to help with the pain. We still do not have a diagnosis. She remains on TPN as we are refusing the J tube. She cannot take the J tube. I told the doctors it's as if her stomach treats anything going through it like an invader and attacks it with unrelenting spasms. She says she feel like her stomach is squeezing her to death. Keep up the good fight for your daughter. Your are her voice when no one will listen to her.

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I had this pain as well for about a month. My doctor just said it was part of the healing process, but it did go away. It hurts really badly, a stinging sharp. Whenever I'd sit or get up, cough, sneeze, any movement and Ahhh!

I just tried to hold it steady in one place with my fingers while I was getting up. I also found that some clothes that I was wearing made it 10x worse. The lower the waist of pants, the better. I also found that Patchwork Peddler's tube pads help. They help to fill any space and they are made out of special bamboo material that helps heal the skin. I would highly recommend trying the pads.

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I have had a j tube for almost 9 years now. I had one in one location for about 5 years and then the intestine wall got scar tissue on it or something and they had to make another ostomy. (Now I have 3 belly buttons). I now have a Mickey-Dee tube which is held in by a balloon filled with water. The acidic fluids in the small intestine eats away at the balloon so I have to have it replaced every 4 months. My main pain problem is it sits right where my pants fit and irritate it, so I have to watch what i wear. Another cause of pain is that this time the doc put in a tube that was too long and so it sticks out too far and rubs on stuff and doesn't fit tight enough so it leaks. The skin around the ostomy is really red and sensitive. The ostomy nurse that taught me how to take care of it gave me some sterile no sting barrier film squares to clean it with. Then I have a powder I put on and then they gave me some Calmoseptine ointment to put over that. Then I put the gauze and tape over that. It sounds like a real chore, but it relieves the pain so it's worth it. I have another appointment to have a new tube put in a week from tomorrow. It will be a shorter one so maybe it won't hurt so bad.
I don't know if what I've said has helped anyone, but I'm just sharing my experience with j tubes.

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My daugher has had a g-tube and j-tube separately and now has a combination g/j tube. She has always complained of pain with her tubes when they are left hanging. Because of this, I invented a product to help eleviate some of the pain. Taping her tube never worked and she became very sensitive to the adhesive. This product keeps the tube snug against her body and safe. If you want to check it out, you can go to my website: www.mypokit.com

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