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09-21-2016, 12:40 PM   #1
Josuesmom
 
Join Date: Apr 2016
Location: Chandler, Arizona
NG tube vs G Tube

Was told yesterday after a Colonoscopy that my son needs to go in to have an NG tube put in. I have been reading about it and was wondering if it might be better to ask for a Gastronomy tube. Does anyone have any input or knowledge on this?

Any answers are appreciated.

Thank You
09-21-2016, 02:35 PM   #2
Maya142
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We have done both. We started out with an NG tube. Used that for several months - she inserted it every night before bed and did feeds overnight. The first night was rough - she was very uncomfortable and hated it. But the second night was easier and within a week, she could insert the tube in 10 seconds and didn't mind it at all - said it was much easier than drinking Peptamen Jr.

It depends on how old your son is, but some kids (usually younger ones) choose to keep it in and not bother with inserting it every night.

My daughter's situation is a bit different because after 6 months of the NG tube she stopped tolerating NG tube feeds. It turned out that she had Gastroparesis, so her stomach was not emptying properly. We eventually went to an NJ tube (like an NG tube but goes into the small bowel not stomach, so is placed by interventional radiology) for 3 months.

She got REALLY sick of the NJ tube - it was in all the time since it could only be replaced at the hospital. It's also thicker than the NG tube so it was not comfortable. Her nose and throat became sore. BUT she did gain nearly 20 lbs and began to feel MUCH better. And she did get used to it though she hated having it in all the time (but she was 17 at the time I think).

At that point, it became clear she would need this long-term and we went to a GJ tube (same surgery as a G tube). She spent 3 days in the hospital. It's a surgery, but a very minor one. However, her site got infected several times, so recovery was not fun. Typically it should take about a week to recover but she took much longer.

We are very glad we got the GJ tube - it is much better than the NG/NJ tube. She especially likes that it can be hidden.

But MOST people start out with an NG tube to make sure your child tolerates feeds. Our GI would not do the surgery until she had been on the NJ tube for 4-6 weeks - she needed to see that my kiddo tolerated the feeds and gained weight.

Every GI is different though and they all have different procedures. Some put in a G tube immediately if it's clear it will be needed for the long-term. I would say it depends on how long you're going to need it but I don't regret starting with the NG tube. We were really hoping it would be a short-term thing and once my daughter got used to it, it really was not so bad.

We used a tiny NG tube - 6Fr - which is an infant size (though my daughter was 16). They are very thin - like spaghetti.

Feeding Tube Awareness is a great website that has a lot of information about the kinds of feeding tubes.

Good luck! Let me know if you have any other questions.
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
09-21-2016, 02:46 PM   #3
Josuesmom
 
Join Date: Apr 2016
Location: Chandler, Arizona
Maya 142,

Thank you for your detailed answer. He is 17 years old and we are using it to rest his bowels, weight is actually fine but there is enough damage to his Ileum that we are hoping bowel rest will help some. He had a colonoscopy yesterday and there is quite a bit of ulceration all the way from the esophagus to the distal Ileum along with thickening and narrowing. He has been on Remicade for 8 months now and this latest scoping found the worst damage since he was diagnosed in 2011. If we don't see changes withholding solid food and change in medication, as well as adding IV steroids then surgery seems to be the next option.

He is also dealing with CSF flow problems which cause horrific headaches, as well as Myositis which has left him almost unable to walk right now. Will be seeing Rheumatology tomorrow before being admitted to the hospital by GI. With so much pain and discomfort going on I hate the idea of him having to do this whole NG tube everyday.

I am starting to worry about his mental health with having to deal with so much.
09-21-2016, 02:52 PM   #4
my little penguin
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Can he drink it orally ?
Ds has been on boost peptamen Jr and now neocate Jr and done een all orally no ng tube
Just a thought
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DS - -Crohn's -Stelara -mtx-IVIG
09-21-2016, 02:54 PM   #5
Maya142
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Your poor boy!!

There are videos online of kids inserting NG tubes. It's actually surprisingly easy - they do it while drinking water and it just slides right down.

Does he see a psychologist? We found that seeing a psychologist who works with kids with chronic illnesses really helped.

It sounds like it's going to be short-term. In that case, I probably wouldn't do a G tube. My daughter was on an anti-TNF + Imuran at the time and that is why they think she got infections. Plus, if you're adding steroids (or he is already on steroids), that just increases the infection risk. So that's one more thing to think about.

That said, considering he is dealing with so much at once, it might be easier for him to have the G-tube.

Honestly, you should ask him what he would prefer and also talk to his GI.Show your son the videos (just search on Youtube) - he may want to give the NG tube a try.

My daughter was very malnourished so she was admitted to the hospital when learned to insert the NG tube (watching for Refeeding syndrome). But some kids do it in an outpatient appointment.

I honestly am not sure which would be easier. My daughter thought the NG tube was not bad at all, especially inserting it at night and taking it out in the morning. If it's just going to be 6 weeks or 2 months, I'd probably at least try the NG tube and then if he can't tolerate it, just go to the G tube.
09-21-2016, 02:55 PM   #6
Maya142
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I can tag some more moms whose kids have had NG or G tubes: pdx, Clash, Sascot, Farmwife
09-21-2016, 03:21 PM   #7
pdx
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Josuesmom,

So sorry to hear about everything that your son is dealing with. I totally understand why you wouldn't want to add another difficult thing right now. When our doctor recommended NG tube feeding for my daughter when she was at her sickest, I felt the same way. I asked if we could do a G-tube or TPN instead, thinking that an NG tube would be really hard for her. The doctor convinced us to try the NG tube first, and I'm so glad now.

Just like Maya described above, it only took a couple of days for my daughter to be very comfortable with the tube, and then she really didn't notice it. She chose to have it in all the time for the first 8 weeks, but then after that she put the tube in herself each night, and took it out in the morning. Putting in the tube was very easy for her after watching a video on Youtube where a young teen shows how to do it. Here's a link to the video she used:

https://www.youtube.com/watch?v=hjlf_A31UTg

After just a couple of days of tube feeding, most of my daughter's abdominal pain and nausea resolved. She had been having terrible pain for months, so that was a huge relief. After two months of tube feeding, Remicade finally started working for her, months after starting it. (She also had some help from budesonide and methotrexate, along with several increases in Remicade dose during that time.)

My daughter is really sensitive to physical stuff. IV's and blood draws are still really hard for her, for instance. But the tube was not very hard for her, after those first couple days. And an NG-tube carries less risk than a G-tube or TPN, so I'd encourage you to at least try the NG-tube first. Good luck; I really hope that it helps your son.
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
09-21-2016, 04:15 PM   #8
Clash
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My son had the NG tube. He also inserted it each night and removed it each morning. He was 15 or 16 at the time. There was a girl in his class who had one as well and she left hers in.

The first week was rough because the tube size but we switched to 6 fr on the 4th day and never looked back. He had no problems with it and could get it in really quickly.

The major con to the NG tube is my son is soooooo messy. When he would set up his formula bags before bed or remove everything for the morning he always spilled so we put rubber backed rugs in his bedroom that were washed frequently. Other than that he really didn't have issues with it.

His inflammation was located, at that time, in his terminal ileum at the IC valve. He wasn't on EEN but supplemental EN in an effort to put some weight on him to prepare him for surgery. So he got full calories(2700) during the night and was able to eat during the day as well. It sure put the weight on him but when we tried the lower the amount of calories of formula he would lose. The GI said due to the severity of inflammation that the only nutrients being absorbed was during the tube feeds at night and not much with his meals during the day.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
09-21-2016, 05:02 PM   #9
Sascot
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Hi, sorry to hear about your son's struggles. My son did 8 weeks of the NG tube but kept his in the whole time and had his feeds at regular mealtimes. The first two days were horrible but after that he hardly noticed the tube anymore. His tummy symptoms went away after the first week. Good luck if they go that route
09-21-2016, 05:04 PM   #10
Josuesmom
 
Join Date: Apr 2016
Location: Chandler, Arizona
Maya 142,

They will be doing IV steroids during this hospital stay. He has been on oral steroid before.

Thinkign we will give the NG tube a try and see how it goes.
09-21-2016, 05:06 PM   #11
Josuesmom
 
Join Date: Apr 2016
Location: Chandler, Arizona
Sascot, I was wondering if it was possible to just keep it in the whole time, I think that might just be the best idea for us.
09-21-2016, 05:16 PM   #12
Maya142
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It can definitely be kept in if your son prefers that. My daughter went to school with her NJ tube (which can't be taken in and out because it goes into the small bowel). She didn't like it at first but she did get used to it. Kids (teenagers really) were curious but were also very nice to her.
09-21-2016, 05:29 PM   #13
Josuesmom
 
Join Date: Apr 2016
Location: Chandler, Arizona
Maya142 He is actually doing online school (cause of the other stuff).

Happy to hear kids were nice to your daughter, This is all so hard so hard on them.
09-21-2016, 05:39 PM   #14
Maya142
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Lots of good info here: http://www.feedingtubeawareness.org/...s/nasal-tubes/

If he is going to be hooked up during the day, make sure to ask for a backpack from your medical supply company. Usually they will deliver supplies the day you come home from the hospital (or even before that). The pump can be placed in a little backpack which allows kids to move around much more easily than if they were hooked up to an IV pole.

http://www.feedingtubeawareness.org/...daytime-feeds/

Finding the right formula can be trial and error, so if the first one works, don't give up hope! Also, he should expect to be uncomfortable for the first day or two. My daughter did not expect it and was very upset when her nose and throat hurt. Thankfully it got better quickly.

Good luck!!
09-21-2016, 05:44 PM   #15
pdx
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Maya142 He is actually doing online school (cause of the other stuff).

Happy to hear kids were nice to your daughter, This is all so hard so hard on them.
My daughter was at home too while she was using the tube; it makes it easier for sure! We tried out the backpack, but my daughter ended up preferring the IV pole. She hauled it all over the house, up and down stairs (not necessarily reccommended ), and even into the back yard!
09-21-2016, 06:33 PM   #16
Josuesmom
 
Join Date: Apr 2016
Location: Chandler, Arizona
Thank you maya142 and pdx for all the great info.

I really appreciate it.
09-22-2016, 07:58 AM   #17
Tesscorm
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Totally behind the ball here! I wrote this reply yesterday and forgot to post... just found it on my computer this morning! In any case, you've already received lots of info but am posting it now in case it helps at all...

My son's initial treatment was exclusive EN, using an NG tube, for six weeks. He was just shy of turning 17 years old. He had no problem with the NG tube. He was inpatient when admitted so, while still there, he was taught how to insert the tube (nurse did it with him 2-3 times??, and then watched him do it himself a few times). He learned quite quickly and, within a week, it took him only a few seconds to insert the tube himself.

He would insert each evening and ingest the formula overnight. In the morning, he would remove the tube (even easier and quicker than inserting).

There were a few glitches at the beginning - things like the tube creasing or coming loose, the sensation of having something in your throat bothered him the first few days (but, he became used to it after just 2 or 3 days), the noise from the pump annoyed him (but, you'd probably have the same using a g-tube??).

Because it was 7 days (nights) per week, instead of going to stay a friends' homes overnight, they just came over. He was very open about it all and often his friends wanted to 'watch'.

He wasn't allowed any food during the six week exclusive period (some GIs allow limited amounts of food) but he was allowed clear fluids. During the day, he took broth (in a thermos) to school so he could have lunch with friends. I also arranged for the school to keep freezies for him to also eat (he was allowed freezies, popsicles, jello). Evenings, he would have a bowl of broth. One challenge with using the NG tube overnight is that he was hungry by late afternoon/early evening. Broth maybe helped slightly but really distraction was the only help.

Good luck!
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
09-22-2016, 08:01 AM   #18
Tesscorm
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Oh, depending on the formula you use, you may be able to minimize the 'hunger' challenge. My son's formula was not 'drinkable' due to the taste. But, many formulas are tolerable (if not exactly 'tasty'), if your son uses a formula like Peptamin, he could ingest the majority of it overnight but drink a shake or two during the day when he feels hungry.
09-22-2016, 03:44 PM   #19
Josuesmom
 
Join Date: Apr 2016
Location: Chandler, Arizona
Tesscorm, thank you so much for sharing your experience. He will be admitted later today to have it placed.. We were told he could leave it in for up to a month, for now he says that's what he's going to do. We'll have to wait and see.

I am definitely dreading the whole hunger thing.

I will update later tonight.
09-22-2016, 04:04 PM   #20
Maya142
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Good luck!! I'd ask and see if he can eat anything - some GIs allow things like broth and popsicles.

We did find that my daughter was pretty full with the NG tube feeds, so it might not be so bad.

Hope it goes well today.
09-22-2016, 04:54 PM   #21
pdx
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Hope everything goes well.
09-22-2016, 07:52 PM   #22
Farmwife
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I'm late also.
You've been given wonderful advice already.
My girl was much younger.
She did both the ng tube and now has a permanent gtube placed.
It's been a life saver for her.
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
09-23-2016, 08:28 AM   #23
Tesscorm
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Hunger may not be as big a problem if he has feeds during the day. As my son had his formula overnight, he'd go without food from 8am to 11pm approx., other than broth, freezies, etc. If your son keeps the tube inserted during the day, he will be able to spread out the formula throughout daytime hours - this should alleviate some of the hunger, although not the craving for actual food.

If he is allowed broth, this helped my son quite a bit. While not exactly 'filling', the savoury flavour did allow a sense of eating food. I varied the broth flavours (chicken, beef, veggie) and would heat up with different herbs, ie beef with rosemary, chicken with basil, etc. to help change up the flavour a bit. (Strain/remove the herbs after heating.)

Not lots of options when on a formula only diet.
09-23-2016, 08:42 AM   #24
my little penguin
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Crushed ice
Chewing is important
Crushed ice was key
We got the ok for 1 teaspoon of sugar drizzled over crushed ice
But most of the time ss just wanted it plain
He drank his but basically four "meals " a day
So as long as he hooks up during the day no hunger
Ss has been even lasttwo days to calm thing down again no hunger since he has his meals spread out good luck
09-23-2016, 11:00 AM   #25
Worried mama
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I think my reply may be too late...but my son, 14, does overnight tube feedings. The tube is no big deal, and if I knew how easy it would be, I would have done it sooner. Right now he's just using it for supplemental nutrition and weight gain...it's working.
09-23-2016, 02:38 PM   #26
Josuesmom
 
Join Date: Apr 2016
Location: Chandler, Arizona
Thank you all for your responses and well wishes.

He had tube placed last night with no complications, it was removed this morning so that I can practice doing it a couple of times.

GI came in and informed us that he is only allowed to drink some water, and the idea is for this (ensure and some other formula) to be his only source of nutrition and treatment.

We asked how long we would be doing this and he said "at least a year" He said that because he has gotten worse and not better and because of some blood work showing he can no longer be on the Remicade, not antibodies (results aren't back yet) but Histone and complement c-3 and c-4 levels. So for the next year or so this is going to be his treatment, if we see any sign of improvement in the next 6-8 weeks he will have him go in to have a G-tube placed.

If no improvement we will be talking about surgery next.

Questions:

1) Has anyone used only this as treatment?
2) Does a year seem like a crazy long time?

Thanks again for your responses
09-23-2016, 02:52 PM   #27
Tesscorm
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I've never heard of 'exclusive' EN (enteral nutrition) used for a year. By 'exclusive', I mean EN (formula) only, no other foods for an entire year.

I have seen EN (not exclusive) used as a supplement for years, however. My son did six weeks of exclusive and then continued, using the NG tube nightly, for another two years on a supplemental basis (ie he continued with half the formula dosage at night and added a regular diet during the day).

Are you sure his GI didn't mean that, after a certain exclusive period, he would continue with the formula on a supplemental basis??

Supplemental is usually done in addition to drug treatment as well.
09-23-2016, 02:56 PM   #28
Tesscorm
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Also, re using this 'only' as a treatment... this was how my son was treated for the first year, although I think this is not the usual course of treatment.

After his six weeks of exclusive EN, he went to the supplemental EN. His only medication was Nexium (antacid). The exclusive period (plus a week of IV Flagyl) took him into clinical remission (no outward symptoms) but MRE's continued to show some inflammation. It seems the supplemental EN kept things under control, as nothing worsened during that year, however, it did not eliminate all inflammation.

By this point, my son turned 18 and was transferred to an adult GI (as he'd been treated at our children's hospital). His adult GI was not comfortable with the level of inflammation, even if it hadn't changed over the year and added remicade.

So... while my son didn't suffer any ill effects by being treated by supplemental EN only for a year, it did not eliminate all his inflammation.
09-23-2016, 03:28 PM   #29
my little penguin
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Seeing you are in the US
Please get a second opinion
Boston children's chop and cchmc are the top three ped ibd centers in the US
They will at least do a record review and make recommendations
Een tends to be most effective in kids within the first year of Dx
After that the failure rate is high
There are plenty of other meds to try
Humira
Stelera
Simponi
Entyvio
Etc....

They will do online consults if needed
09-23-2016, 03:44 PM   #30
Josuesmom
 
Join Date: Apr 2016
Location: Chandler, Arizona
Tesscorm,

I'm not sure if that's what he meant. It seems that we are having a communication problems with GI.

Definitely going to look for a second opinion.
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