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04-20-2014, 07:30 AM   #1
SupportiveMom
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NG Tube Experiences

We are 5 days into my daughter's first NG tube. She is being fed exclusively through enteral nutrition (EEN , on Peptamen Jr. A mix of 1's & 1.5's) The first day she really couldn't talk, but now she seems to be adjusting fine. She is complaining a bit about dry scratchy throat so I am trying to increase some water orally and get her to chew gum to get the saliva flowing.

Anyone have some tips they found useful to them to manage on an NG tube exclusively? We have another 5+ weeks to go on this.
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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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04-22-2014, 06:56 AM   #2
littlemissh
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I have an NJ tube currently and had several times.
Make sure the tube is changed on time- I think it becomes less pliable over time and so rubs more). Mine gets quite painful at about 4-5 weeks.
If it is uncomfortable sucralfate suspension works well (though problems with availability in the UK currently :-( )

Good luck to your daughter, I hope she is still managing ok.
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Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
04-22-2014, 07:06 AM   #3
SupportiveMom
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Thanks. Yesterday she vomited and the tube actually came out her mouth. So it was in her nose and out her mouth. We are still in the hospital so they showed her how to take it out if it ever happens again. We will just have to go to the hospital to put it back in.

It makes sense if she vomits that would happen. I just had no idea it would do that.

04-22-2014, 08:30 AM   #4
littlemissh
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That happened regularly to me and that is partly why I now have an NJ tube instead (also because of gastro duodenal disease and possible gastroparesis).

It is a very weird feeling having a tube hanging out of your nose and mouth whilst trying to undo the sticky tape holding it all in place to be able to remove it!! Not so easy to replace an NJ though as it needs putting down by a gastroscope.

I hope her vomiting settles and you can get home soon.
05-05-2014, 09:34 PM   #5
flowerlight
 
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Hi, Have had Ng tube now for almost a year,
so hopefully my experiences can benefit you : )

1 - Tube Placement
-- how the tube is fastened in place can make a big difference to how comfortable it is. Try experimenting with
-- dif types of tape (the fabric can make a big difference),
-- where you stick the tape (making it secure, lessening movement and rubbing)
The norm kit comes with a plaster, but this becomes gooey and irritating to the skin, along with not holding the tube in place.
My option-- Hyperfix, extremely breathable, good stick without being gloopy, lasts for around 4-5days before you replace it.
Cut a rectangle, chop a line up the length to mid height. put the solid part on nose, and wrap under the chopped section sticking on the above hyperfix.
I have something from the hospital a bit akin to masking tape that i place a small but securing section on my cheek. Tucking the tube behind my ear
--Keep track on the type of feeding tube and syringes that work with your one. I always try to get one spare to keep to take with me next time it needs replacing.

2-Dose and moving around.
--Backpack - if they didnt give you one, give them a ring. I have found it incredibly useful and important thing to have when going outside the home and even just carrying it around during the day. It is specially made for carrying the feed around and when put down a section can be pulled out to make it into a stand : )
--Dose - A dose at a rate good for you.
--Alarm - the volume on the alarm can be turned up if you are worried about not hearing it. It is also important to notice if it says In, or Out as the issue. In is between the bottle and the device, out is the bit from the device to you.
--Spills - If it spills on surfaces it turns hard like candy after a time, so cleaning promptly is always good!

3- Daytime vs Nighttime -
Daytime - Good - If problems arise your already awake, Lasts months longer the Ng tube, Very few blockages. Bad - You are gonna be doing a bit more carrying!
Nighttime -Good - less carrying. Bad - tube can be accidentally disconnecting whilst asleep leaving the machine to keep pumping onto you, Tube lasts significantly less time (from 2-3 weeks nighttime - 3-4 months daytime)

4- Sickness
Being sick and throwing up your feeding tube is not nice, try to keep calm, remember, dont pull on the section coming out form your mouth, take off the tape and pull out through nose.

If i think of anything else ill pop in another reply ^^
Hope this helps you! ^^
05-07-2014, 05:45 AM   #6
Spooky1
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Yes, I too had huge issues with puking and ending up with the tube out my mouth and nose. I'd get in a panic and suffered because of no one to help me and the tube not only hooked up around the epiglottis but I get blood blisters in my throat which get bigger and bigger then burst then ulcerate. I fully understand how it feels with the ng tube. I have had a PEG tube for 10 years and believe me they can bring their own issues. I think time will tell and things will settle down. I'm not sure if throat lozengers that numb the throat or sprays might help. it's been a long while since I had one. But the advice here from others seems good.

best of luck
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