J-Tube feedings and pain

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RE: J-Tube feedings and pain

by desertseagull on Tue Nov 30, 2010 01:09 AM

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On Nov 29, 2010 5:54 PM Roselvr wrote:

I'm so sorry you've been suffering so long from a childhood accident.

You may also try the stomach section- they may be Able to give you some advice.

http://www.cancercompass.com/message-board/cancers/stomach-c ancer/1,0,119,9.htm"" target="_blank" rel="nofollow">http://www.cancercompass.com/message-board/cancers/stomach-c target="_blank" rel="nofollow">http://www.cancercompass.com/message-board/cancers/stomach-c

Thank you.

RE: J-Tube feedings and pain

by desertseagull on Tue Nov 30, 2010 01:13 AM

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On Nov 30, 2010 1:09 AM desertseagull wrote:

On Nov 29, 2010 5:54 PM Roselvr wrote:

I'm so sorry you've been suffering so long from a childhood accident.

You may also try the stomach section- they may be Able to give you some advice.

Thank you.

I decided not to wait until Tuesday to see the surgeon, because the pain had grown to intolerable levels.  And because of your advice.  Thank you

They resutured the j-tube back to the outside of my abdomen, but they cannot get me in until Wednesday for a contrast Xray to see if and where the tube has moved to.  They said if I went to the ER I might get in quicker, but decided against wasting ER time.  This was disappointing for me, because, spending another 2 days in pain, is miserable, not to include the fact that I have sever nausea and dry heaves (which makes the pain in the J-tube area more intense).  They did not culture the drainage either, not sure why.

Just wanted to keep you all informed.  Thank you all for your suggestions.  I appreciate knowing I am not alone out there...

RE: J-Tube feedings and pain

by Roselvr on Tue Nov 30, 2010 02:16 PM

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Good luck with getting a culture- our surgeon wouldn't do one even though my hubs peg looked infected.

He had it removed 6 months to the day- when it came out it was black & looked like fungus was growing on it.

RE: J-Tube feedings and pain

by desertseagull on Tue Nov 30, 2010 03:41 PM

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On Nov 30, 2010 2:16 PM Roselvr wrote:

Good luck with getting a culture- our surgeon wouldn't do one even though my hubs peg looked infected.

He had it removed 6 months to the day- when it came out it was black & looked like fungus was growing on it.

That is awful.  Did you have the severe pain to go with it.  Mine has been in 7 weeks to the day today.  And I am not liking it with the pain...

RE: J-Tube feedings and pain

by Roselvr on Tue Nov 30, 2010 04:22 PM

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My hub had pain since day 1. I ended up finding the  information that I posted in the other thread about how stomachs are supposed to float in the body- but putting a feeding tube in "buttons" it to the skin so that any movement it gets tugged; so we figured that's what was going on.

There was one point where he had no pain- it was after his thrush (mouth) infection. He was on the antifungal Fluconizole 200 mg- once it was stopped; the pain came back & he had a growth- it's called Granulation tissue- it looks like what tongues are made of & is painful because there are a lot of nerve endings on it.

What I found was that when I was cleaning it 3x a day; it was fine; but after a few weeks hub wanted to do it himself & obviously couldn't clean it properly; it would start to get red & the tissue would grow back. Make sure you keep it clean- we used a peroxide solution which was 1/2 water.

The surgeon hub had was a jerk- his quote- "I see 500 of these a year, there's nothing wrong with it" we asked for the peg to get changed around the 3 month mark- he refused.

So my hub had all sorts of pain- from the Granulation tissue; moving & the stomach not floating like it's supposed to; gas, & what I feel was spasms. Thanksgiving day they were releasing him after the thrush- he was constipated from morphine & was puking from it too. We then had withdrawals- and the doctors refused to culture the tube site- I also asked for an ultrasound; that was refused.

At the 6 month point we lied & said he was eating; he'd gained some weight back. Within an hour of it being pulled- he felt much better; and improved by 24 & 48 hours.

I know you don't have that option right now. Have you looked into TPN?

RE: J-Tube feedings and pain

by desertseagull on Tue Nov 30, 2010 05:46 PM

Quote | Reply

On Nov 30, 2010 4:22 PM Roselvr wrote:

My hub had pain since day 1. I ended up finding the  information that I posted in the other thread about how stomachs are supposed to float in the body- but putting a feeding tube in "buttons" it to the skin so that any movement it gets tugged; so we figured that's what was going on.

There was one point where he had no pain- it was after his thrush (mouth) infection. He was on the antifungal Fluconizole 200 mg- once it was stopped; the pain came back & he had a growth- it's called Granulation tissue- it looks like what tongues are made of & is painful because there are a lot of nerve endings on it.

What I found was that when I was cleaning it 3x a day; it was fine; but after a few weeks hub wanted to do it himself & obviously couldn't clean it properly; it would start to get red & the tissue would grow back. Make sure you keep it clean- we used a peroxide solution which was 1/2 water.

The surgeon hub had was a jerk- his quote- "I see 500 of these a year, there's nothing wrong with it" we asked for the peg to get changed around the 3 month mark- he refused.

So my hub had all sorts of pain- from the Granulation tissue; moving & the stomach not floating like it's supposed to; gas, & what I feel was spasms. Thanksgiving day they were releasing him after the thrush- he was constipated from morphine & was puking from it too. We then had withdrawals- and the doctors refused to culture the tube site- I also asked for an ultrasound; that was refused.

At the 6 month point we lied & said he was eating; he'd gained some weight back. Within an hour of it being pulled- he felt much better; and improved by 24 & 48 hours.

I know you don't have that option right now. Have you looked into TPN?

What is a TPN.  My J-Tube is in my small intestine, and sutured to the stomach wall.  I believe my pain is caused from the paristalsis of the colon, (because I can feel the squeezing motion and my tube move in and out with the spasm, and the pain is related to it.  I do have granulization beginning, the surgeon said yesterday.  I am going to have it x-rayed tomorrow morning with a contrast dye to see the position of the tube.  I trully hope it will be easy for them to see the problem, and they can FIX it easily.  I know pain will be involved.  But am ok with that.  I just can't take living in my bed with limited positions until they decide I have gained enough weight to do the surgery.  Problem is, with this pain comes nausea, which in turn comes dry heaves, and inability to take in the formula.  I loose more than I can gain sometimes.  Also, I have an issue in my esophagus that is diverticuli like, which I believe is draining into my stomach and increasing the dry heaves.  Once again, they do not even want to attempt to repair the problem until I have weight and strength.  They are considering using part of my small colon to repair and rebuild the esophagus..  This will be a long and recovery time is longer... Not sure if anyone else is experiencing nausea and dry heaves like me.  I use to alternative methods to help with the nausea.  1 is a warm bath, with the water running.  If I keep the bath water moving like a gentle wave, it seems to let up on the nausea somewhat.  the 2nd method is to vaporize.....DRYHEAVES is a whole nother cup of tea, that I have no solution or methods to help with..

RE: J-Tube feedings and pain

by Roselvr on Tue Nov 30, 2010 06:26 PM

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This is the blog of one of my cancer compass friends-

http://lifeaftergastrectomy.wordpress.com/

It's called life after total gastrectomy. She has the heaves.

TPN: Total parenteral nutrition is IV feeding

http://en.wikipedia.org/wiki/Parenteral_nutrition

She posts in this section-

http://www.cancercompass.com/message-board/cancers/1,1,119.h


RE: J-Tube feedings and pain

by doingfine on Tue Nov 30, 2010 10:46 PM

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So sorry you are having pain and problems.  I am pretty much like Andy and Phil A.  I had my J-tube for 8 months and had lots of problems with it.  Mostly mine was a plugging problem.  Anyhow, I had it stitched in at first.  I used Hydrogen Peroxide to gently clean the area twice a day.  I did have a discharge and some crusting, but it did not look infected.  I received my nutrition at night while I slept in a recliner.  One night it came apart and got me kind of wet, but I put it back together and finished the feeding.  I preferred to sleep in a recliner than be tied to the "thing" for 12 hours.  Mine was set to a slow speed so we (my hubby and I, he helped) set me up around 7 pm so I could be finished by 7 am.

Midway through the 8 months my first tube gave out and the surgeon pulled the old one out and re-inserted a new one in about 2 minutes.  It was entirely painless.  The second one had the patch.  I did not like the patch because it itched and was more uncomfortable than the stitches, but it got me through.  I never found a remedy for dry heaves and they really hurt.

I have heard of the procedure to use colon to replace the esophagus.  Best wishes.  We'll be praying for you.  Keep us posted. 

RE: J-Tube feedings and pain

by desertseagull on Tue Nov 30, 2010 11:20 PM

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On Nov 30, 2010 10:46 PM doingfine wrote:

So sorry you are having pain and problems.  I am pretty much like Andy and Phil A.  I had my J-tube for 8 months and had lots of problems with it.  Mostly mine was a plugging problem.  Anyhow, I had it stitched in at first.  I used Hydrogen Peroxide to gently clean the area twice a day.  I did have a discharge and some crusting, but it did not look infected.  I received my nutrition at night while I slept in a recliner.  One night it came apart and got me kind of wet, but I put it back together and finished the feeding.  I preferred to sleep in a recliner than be tied to the "thing" for 12 hours.  Mine was set to a slow speed so we (my hubby and I, he helped) set me up around 7 pm so I could be finished by 7 am.

Midway through the 8 months my first tube gave out and the surgeon pulled the old one out and re-inserted a new one in about 2 minutes.  It was entirely painless.  The second one had the patch.  I did not like the patch because it itched and was more uncomfortable than the stitches, but it got me through.  I never found a remedy for dry heaves and they really hurt.

I have heard of the procedure to use colon to replace the esophagus.  Best wishes.  We'll be praying for you.  Keep us posted. 

Thank you for your words of encouragment doingfine.  I have been battling this almost a year now, since the symptoms reappeared (gradual onset).  It seems like forever.  Funny you should mention the recliner.  I was just telling my hubby, how it would be nice to be able to change positions in a reliner, rather than being bed riddin and trying to make sitting positions in the bed. 

I am seeing the J-tube Dr. tomorrow after the radiology contrast dye test.  I trully hope they can easily see the problem and they can fix it.  I will see the surgeon that is considering doing this esohagus surgery in the future.  Hope he has a clearer game plan now..  Anyone know a surgeon that has worked with lye damaged esophagus, and esohphagus transplants?  Prefer USA, (insurance won't cover outside USA)

RE: J-Tube feedings and pain

by andy2009 on Wed Dec 01, 2010 02:09 AM

Quote | Reply

all the best on your appointment. i can say that i have absolutely no issues with my J tube. yes i have to clean it every other day and i got to clear it when it gets blocked, but otherwise no pain, no problems.

andy

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