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12-29-2011, 10:36 PM   #1
joshw2011
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NG tube

Hello, I started an NG tube for overnight feedings to prevent further weight loss, and get more nutrition and gain some weight instead. I started two weeks ago, and spent two nights in the hospital. First insertion was the nurse, second was me, and I have been removing in the morning and replacing at night since then. The past few nights I have met much resistance, not being able to insert at all last night. Gets a few inches in and then stops, and hurts to push harder. Called a nurse and got some tips, and got it in. I'm just gonna keep it in 24/7 now. I should only need it for a month or two, most likely.

My question, though, is relating to care of myself. I assume the tape will come loose in the shower? I have bad acne so need to wash my face 2x daily and apply acne meds after washing. I also have to shave. So when I do these, do I just let it dangle and keep it as still as possible? I guess I can put it behind my ear, but that's kinda hard with glasses.

Also is it bad to have it in my right nostril and taped on the left side of my face? My nose is still so irritated, and having the right nostril/right side of my face taped made it hurt really bad, on the left it doesn't hurt. I made it as unsharp of a turn as I could, but it still has a tiny bend in it. I tested putting water down, and it went fine, so I assume the feeding will be fine, since it's much slower than I pushed, 90 mL/hour. Thanks
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12-29-2011, 10:52 PM   #2
MADiMarc
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Josh, the slight bend shouldn't be a huge problem with a very slow push. Just keep an eye on it. Your machine should alarm if the fed cant get through. I've never had an NG tube myself but have treated many patients with them (I'm a speech pathologist). The tape is very irritating and will do your acne no favors. It is a necessary evil, I'm afraid. I think you will just have to experiment with it for showering, face washing, shaving to see what works best for you.
Good luck!
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12-29-2011, 11:41 PM   #3
Tesscorm
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Hi Josh,

Sorry to hear you're having a hard time with the tube. As Michelle said, the pump should give an alarm if the feed can't go through (but, you are using a pump, right? Not gravity feed?)

Were you using a gel when you inserted the tube? And a guide wire? My son forgot the guide wire once and had a hard time inserting the tube until he realized he'd forgotten the wire. Also, my son has a much harder time inserting the tube in his right nostril. Always, always uses the left. Did you have difficulties on both sides? And, just one other question, there may be different sizes of tubes??? Perhaps it's possible for you to use a smaller tube?

Good luck!
12-29-2011, 11:53 PM   #4
joshw2011
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Hello, yes I have a pump, not gravity feed. No, I don't use gel. The tube is self-lubricating when wet. I've had no problems until just a couple days ago, so it's odd. I'm not congested or anything either. I think it might just be irritation from the tube.

Yes I use the guide wire. If not I imagine it wouldn't go very far haha. But the problem was on both sides, yes. One side went farther than the other, but not by much. My size is 8 Fr, whatever a Fr is. I think I read online the typical adult size is 10, 12, or 14, so smaller probably isn't an option. Especially since Ensure is so thick, and a nurse commented on how hard it was to go in.
12-30-2011, 12:11 AM   #5
Tesscorm
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Just checked my son's tube - it is 6 Fr. His formula is quite thick as well... not sure though if Ensure is thicker... And, if I remember correctly, you and my son are about the same age/size... if the tube continues to bother you, might be worth trying a smaller size.

The gel my son uses is called Muko Lubricating Jelly. Maybe the gel gives some protection/lubrication to the nostril???

Hope the irritation goes away quickly - you certainly don't need another annoyance!
12-30-2011, 06:03 AM   #6
Spooky1
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Hi, this is how to insert tube. place fingers below nostril, push hard on the skin and pull skin right down till you can feel the teeth under fingers on skin below nostril. then put tube up and it doesn't hit that sensitive part. i was told by one gastro bloke that i should keep it in, wich i was happy to do as pushing that wire on the sensitive part just brought niagra falls from my eyes!

next gastro bloke was horrified that i was told to just keep it in. so i learned for myself how to take it out, sterilise then replace. its very easy this way.

good luck, ps. i now have a gastrostomy, tube through abdomen into stomach. far more issues with this than ng tube. not that gastro team tell you the issues you are likely to have
12-30-2011, 07:34 AM   #7
littlemissh
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I have an nj tube for overnight feeds so can't replace every day- has to be put in with a a scope. For the first 2-3 weeks my nostril was really sore but with Vaseline seems much better (same when had ng tube 17 months ago, I guess the body gets used to having a foreign body up the nose! ).
My pump alarms ( infinity flocare ) when the tube blocks and I flush with sterile or cooled boiled water.. Slightly warm works better.

My main problem is a sore throat, even just swallowing saliva- feels like glass in my throat. I have had an nj tube for about 5 weeks now . Does anyone have the same or any tips.
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01-02-2012, 10:14 AM   #8
scotishcanadian
 
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All I can say is be VERY careful that the tube doesn't pass into the first part of your intestine. If you let the tube just dangle from your nose without being secured, you'd be surprised how much length of the tube your nose "slurps" up on it's own without you even pushing the tube farther in. That happened to me when I had my ng tube for two months last year. It made it so that anytime I fed anything through the tube I was left incapacitated on the couch for an hour shaking curled up in a ball.
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01-07-2012, 05:29 PM   #9
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My almost-12 year old is on week 3 of exclusive enteral nutrition (using Boost). Given the challenges of drinking all day, he has begun asking about NG tubes. His questions are: how do people feel during the day? do they drink water? what if I need to go to the bathroom at night? can I take the tube out myself? I have a question: does taking your nutrition at night disrupt your sleep?

Thanks to anyone who can weigh in.
01-07-2012, 06:45 PM   #10
joshw2011
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Hello! How many cans does he drink per day? Is he just drinking them as a treatment, or to try to gain weight? If he only has a few cans to drink per day, I would recommend just drinking them. To me, that is much easier than dealing with the tube. However, it probably depends by person.

I was taking the tube in and out myself, only using it overnight. However, that caused nose irritation, so I now have it in 24/7. My throat is quite sore, so now doing anything by mouth is irritating to swallow.

I do end up waking up after 6 hours or so, because I have to go to the bathroom quite urgently. It is quite annoying, but again will vary by person.

Waking up is annoying, but it is not too difficult to take to the bathroom. The pump is very similar to an IV pump. You unplug it, roll it along with you to the bathroom, and you're all set. My battery lasts 12 hours I think. Plenty of time for bathroom, which is no problem.

Really though, I think the biggest hurdle is the throat irritation. Although I'm not sure how much of that is normal, vs taking it in and out all the time. I had it in for 24 hours the first time I had an NG tube, and ate with hardly any irritation. I think now my throat is just sore from repeated use, so I'm not sure how it would be if I never had taken it out. That might be something to consider, but that can get in the way of some daily activities, and also just make your son feel sad in public and such.
01-08-2012, 05:37 PM   #11
Spooky1
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yes, i had sore throat, now have a gastrostomy, which is very sore and bleeds regularly, but the liquid food overnight kept me awake or having nightmares. so only 50mls per hour.
01-08-2012, 06:54 PM   #12
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Thanks.

Joshw2011: He is drinking 5 bottles a day 9was doing the 1.5calories/cc (up to 1800 calories for weight gain) but we are dropping back down to the level he seemed able to handle - 1400 - 1500 to focus on healing before weight gain.

Joshw2011 and Spooky1: your answers on night time were very helpful. We will try and stick with the drinking program. My son has always thrown up very easily and has ulcers in his esophagus, so I think that the tube would be "one more thing" that would be a big negative to deal with.
01-09-2012, 01:14 PM   #13
Spooky1
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yes, i often get ulcers and blood blisters in the mouth and on epiglotis, stomach and duodenum. throwing up with naso gastric tube is scary, (well i thought so). the drinks should be sipped slowly though.

good luck
Diane
01-09-2012, 02:23 PM   #14
Tesscorm
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Josh - I hope the irritation, etc. is a bit better. I've forgotten, are you doing the formula exclusively? It must have been difficult over the holidays! I hope it's working for you and you've gained some weight and are feeling better!

Hi NewbieMom - As I mentioned in my other post to you, my son has been using the NG tube for months. He has not had any problem with the tube or the night time feeding, however, he does not have ulcers in his esophagus. I can certainly imagine that the tube being put in and out each day (or even staying in) could irritate the ulcers! Did your son's GI have any comment on this?

My son did find the sensation of having the tube in his throat bothersome the first few days. Especially at the beginning, when he was keeping it in most of the day; his dosage was 3000 calories per day (2000 ml) and the pump rate started at 20 or 50 ml/hr and gradually increased to 200-300 ml/hr. At the beginning, to get the full amount, he had the tube inserted for most of the day. He got used to the sensation fairly quickly but he didn't have to deal with pain, just a bothersome sensation. I'm not sure if he just 'adjusted' to the sensation or if the 'sensation' was less bothersome because he started inserting the tube for fewer hours, mostly overnight??

While the nightly tube feeding is beneficial for my son because he is a picky eater and drinking shakes he didn't like would be even more onerous for him, the downside was that during the exclusive six week period he was unable to satisfy any hunger during the day. I know that, by early evening/dinner, he was feeling hungry but wouldn't be starting his feeding until 9pm. He was allowed broth, jello, etc. but it didn't do much to alleviate the hunger.

I hope you are able to find something that works for your son!
01-09-2012, 07:35 PM   #15
izzi'smom
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My daughter only complained of a sore throat for the first week her tube was in...but she complained heavily...she cried and the pain woke her at night.
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01-09-2012, 09:36 PM   #16
joshw2011
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My throat is better, but still quite annoying. I think it just has a lot of irritation to heal from putting in and removing every day for 2-3 weeks.

Tess- no, I am not doing just the formula. I am eating in addition to it. I'm making myself get as many calories as possible, drinking at least 1 ensure and 1 milkshake/smoothie with an ensure in it each day. Preferably two, if I can. Plus regular food. I need to get a lot of weight to help with surgery, which is almost certainly happening.
01-09-2012, 11:50 PM   #17
Tesscorm
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Josh - I hope the irritation alleviates soon! And that the surgery brings you some relief!
02-27-2012, 07:38 PM   #18
Chloeem
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Hi my 5 year olddaughter has had her tube for almost 6 months. I suggest using mineral oil to remove the tape. It definetly comes off easier. It soundsl ike your gaining that is a plus. I would definetly lubricate the end of the tube for easier drop. My daughter complains of her nose hurting. Have you tried Duocal on food or in a drink. Our nutritionist suggested it for us. I put in a pampered chef sprinkling container and she uses it on alot of foods. If possible when you drop tube drink out of a straw. To unclog tube we use gingerale and or cranberry juice the bubbles help push it through. Good luck
02-28-2012, 11:06 AM   #19
littlemissh
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I have now had my nj tube for over 3 months. The sore throat was bad initially as the tube was wide bore. The replacement tube hurt on and off ( and could be so bad I couldn't drink or swallow). It certainly was more frequent as the tube got older and stiffer.
My new tube hasn't really hurt at all in the 3 weeks I have had it...not sure why.

Some tips:-
Make sure it is the finest bore tube possible,

I found that using a throat spray from the chemist took the edge off the discomfort,

The tube needs replacing every 6-8 weeks which is a bit easier for an ng tube. If you have an NJ it needs replacing with an endoscopy. This is because they 'plasticise' over time and become stiff and therefore can irritate more.

Chloeem - which mineral oil do you use - my face gets all sticky and I find the adhesive so difficult to get off- scrubbing with soap is making my face sore! Does the oil stop the next tape sticking?
02-28-2012, 01:39 PM   #20
Chloeem
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I just purchased mineral oil from Target. It is in the laxative sectioin. I use a round cotton pad and really wet it and then wet the whole tape. I use it to gently roll the tape of her face. No it does not affect the next tape. Are you switching nostrils at each new tube? Good luck her cheek is red when we remove it but not sticky. Are you using Duoderm? We found the tegaderm was hard to work with. We purchased animal tape at Kids Hope Chest www.kidshopechest.com They were approved by the FDA and works great. If you would like to add me to your contact list I posted a picture of my Chloe. Good luck!
Sue
02-28-2012, 02:07 PM   #21
littlemissh
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Thanks Chloeem, We don't have Targets- is it a chemist here in the UK but I may have a hunt around a chemist.
They haven't switched nostrils as my nostril is fine and my other nostril is a bit wonky since my husband accidentally broke my nose when he was having a nightmare!!

I use transpore as it sticks well and is transparent which is less obvious...not that a tube coming out my nose is invisible ...lol. I might check out the animal tape as it may be less sticky as the sticky stuff looks all black and nasty after a bit and its so difficult to remove. Whether I can get in the uk I am not sure.
I will add you onto my contact list. It must be hard having a little one with this disease. I find it bad enough my children having to see me have it and get upset...so your child having it must be hard. Particularly family meal times.
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