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Crohn's Disease Forum » Parents of Kids with IBD » Moving from NG to G-tube--Advice?


04-05-2017, 11:26 AM   #1
ChicagoMom
 
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Moving from NG to G-tube--Advice?

So, my 14-year-old DD has been doing supplemental NG tube feedings overnight since November and we are seeing amazing improvements. She's gained weight (which we've struggled with for like 4 years now), grown taller, and started her period finally. GI feels that she is still early enough in puberty that she can continue to benefit from the feedings for another 6 months or so, but is floating the option of having a G-tube placed as we are all kind of sick of the NG-tube. DD is a pro at putting it down, but she's just tired of dealing with it every night, and now that allergy season has hit, her nasal congestion is making it harder. The G-tube seems like an easier option to me and I'm leaning that direction. I understand that it's a surgery and that there are infection risks involved, but I feel fairly confident that we could handle that. Anyway, just wondering if anyone else has a child who has gone from the NG-tube to the G-tube, and if you are happy with that decision or not?
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*R*~mom of *L*~age 14-diagnosed with CD 5/14

Currently taking:
Remicade 10mg/kg
Methotrexate 15mg/week
NG-tube at night

Past meds:
6-mp--discontinued 9/14 because it caused bone marrow suppression
Prednisone--5/14-11/14
04-05-2017, 11:38 AM   #2
my little penguin
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Few things
Is drinking it orally an option?
Only ask since Ds has done supplemental nutrition and een
All orally everything from polymeric (kids boost) to currently neocate jr(elemental )


G tube is not a one and done surgery
The tube still will need replaced every few months
Granulated tissue forms
Leakage
Breakdown of the skin around the tube etc...
Not saying not to do the tube a lot of kids have success with them
But just like the ng tube there are pros and cons and not as simple as on paper
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DS - -Crohn's -Stelara
04-05-2017, 11:43 AM   #3
ChicagoMom
 
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I wish drinking orally was an option, but I just know DD well enough to know that she won't really do it, and it will become a battle. I know to others it might seem crazy that she'd rather thread a tube down her nose than drink 4 bottles of formula, but she really rather would.

Last edited by ChicagoMom; 04-05-2017 at 12:05 PM.
04-05-2017, 11:51 AM   #4
Maya142
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My kiddo has gone to a G tube. I can honestly say I have NEVER regretted it and neither has she!!

If you're going from an NG to a G tube, that is easy. We went to a GJ tube which is slightly more complex (my daughter has Gastroparesis, which is why the GJ was necessary).

The G tube surgery is pretty minor. My daughter was in pain for about a week or two. Two or three days in the hospital. Some kids stay for just a night. The surgery for a G or GJ tube is the same, just the tube they use is different.

She was very sore for the first two days. Anything using her abdominal muscles - coughing, laughing, sitting up - really hurt. But every day she got better.

She LOVES not having a tube in her nose.

It is true that there can be complications, but with a G tube they're usually minimal. Tube changes can be done at home - she can learn to do them herself. Leakage is usually not too bad - we use Desitin or Calmoseptine and that helps a lot. We also use the G-tube pads you get online on Etsy.

We are so so so glad my daughter went to a "belly" tube - it really changed the quality of her life. Prior to that she had an NJ tube for 13 weeks which was miserable, because it had to be left in all the time and replaced by interventional radiology.

Now she has two separate tubes - a G and a J. The G is VERY easy to take care of and never causes problems. The J is more problematic and has to be replaced by interventional radiology and leaks a lot. Most kids don't need two tubes - our story is a bit complex and it has to with Gastroparesis and not Crohn's.

Feeding Tube Awareness has LOTS of info about G tubes - on their FB page, parents always say they never regret going to a G tube and they wish they had done it sooner!
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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
04-05-2017, 11:53 AM   #5
Maya142
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The NG tube is actually not recommended long-term - it can cause scar tissue in the nose.

My DD was completely unable to drink enough formula - a feeding tube has been wonderful for her. She having a tube (or two!) is WAY better than drinking!
04-05-2017, 11:59 AM   #6
pdx
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I wish drinking orally was an option, but I just know DD well enough to do that she won't really do it, and it will become a battle. I know to others it might seem crazy that she'd rather thread a tube down her nose than drink 4 bottles of formula, but she really rather would.
I totally get this--my daughter was the same way. We don't have G-tube experience, but I just wanted to thank you for the update. I'm so glad to hear that your daughter is doing well, and I hope the improvement continues.
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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
04-05-2017, 08:51 PM   #7
Tesscorm
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My son never had a g tube but used an NG tube overnight for approx. 2 years. He inserted it each night and removed in the morning. And, he also preferred the tube to drinking shakes, regardless of taste.

He did also get tired of the whole routine and would complain about continuing it for so long but, what I think helped, is when it was 'supplemental' only, his GI had given him a schedule of 5 nights per week. Having the two nights off helped. He usually chose Friday and Saturday nights. allowing freedom to sleep at friends' places, have friends sleep over, or just a break from it. If we were going away, the GI/nutritionist were agreeable that we could play with the schedule, ie continue with the feedings on the 'off' weekends before and after the trip to make up for the lost nights.

While his 'dose' was 1500 calories per day (night), 5 nights per week, this equalled 7500 calories per week - if we needed to adjust the schedule, we just tried to stay to the weekly calorie target.

I really think having the two nights off per week helped him continue with it. Perhaps that could be an option??

As far as the scar tissue, I can certainly see how that can happen but, in our case, my son had no problems after he stopped using the tube. And, throughout the two years, he always used only the left side (for some reason, could never insert the tube on the right side). But, perhaps, 'long term' is longer than two years???
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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
04-05-2017, 09:12 PM   #8
Maya142
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We actually weren't told what "long-term" means. I would assume years, not months. But I honestly am not sure.

My daughter had an NG tube for about a year before we moved to an NJ and then 3 months for the NJ. Then we moved to a GJ tube.

We also dealt with congestion and irritated sinuses while she had an NG/NJ tube. Plus a sore throat that never got better.

I would say that if you're only planning to use a G tube for several more months, then I probably wouldn't do the surgery. It is a surgery which comes with risks and it's really meant as a long-term solution.

But if supplemental EN is something you are going to use for years, then I'd do it.

My daughter is going to need tube feeds indefinitely - there is no way she can maintain her weight without them. So for us, it was an easy choice.

But if it's just 6 months, well...I'd think more carefully about it.
04-07-2017, 07:06 PM   #9
Farmwife
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Another gtuber here.
Grace has had hers for about 4 years and like Maya we've never regretted it.
She did have a cellulitis infection within the first month.
It was treated swiftly and went away quickly.
No other problems since than.

For grace it's been a life saver and kept her out off the hospital multiple times.
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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
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