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NG Tube Support Group

Yes, Gus had a G-J tube for a while (because of the stricture at is duodenum). He actually has a duodenal bypass between his stomach and his ileum, so when he needed the G-J tube, they just inserted it directly through the bypass and into the small bowel.

The G-J just replaces the G-tube, but it has two lines. One goes into the stomach and one goes into the intestines (usually through the duodenum). So, it shouldn't be an addition, per-se.

Neither the G-tube nor the G-J gave Gus any trouble. They work(ed) equally well.

I wish you and Grace the best of luck!
Cheryl VT

Thanks Cheryl.
How's Gus and his treatment going?
Grace's stomach is working a bit better.
So for know we shouldn't need the gj tube. Thank God.
Her nausea is worse and there's more drainage around the tube. I'll have to keep an eye on it.

Of course Grace is going through all this and I come out to see Grace trying to insert the bag connector into the g-tube itself.:facepalm:
She broke the button and it had to be replaced.:yfrown:
Not fun to that when your in a flare.
Spooky1, Grace knows how ya feel.:ymad:
 
Farmwife,
Gus' treatment is going really well. He has been hospital and flare free for over a year now! Whoot, whoot! It seems like the illeocecal resection and the switch to Stelara were just what he needed. He has had an awesome 8th grade year at school and even our other three children have benefited by Gus' good health, by being able to participate in new extra curricular activities. We really needed this break!
Cheryl VT
 

UnXmas

Banned
My recent experience with an NG: very easy to go in, very comfortable once it's in, very easy to get out - too easy, mine fell out on their own and I had one removed for an endoscopy, so I've swallowed four, plus one last year but to drain bile rather than for feeding. But the feed upset my stomach terribly; my stoma output turned to water, and the bags started falling off because they were wet so much (and I never usually even get leaks). After a few days the doctors and dietician gave up on it. It was also really inconvenient being hooked up to it for two thirds of the day - especially with a leaking stoma, since the feed had to be stopped to shower or even get clothes on and off over my head. I never want to try NG feeding again.
 
my mums stoma bag can fall off when too much fluid is in it, or when flatulence causes a problem. You have my sympathy.
 
My recent experience with an NG: very easy to go in, very comfortable once it's in, very easy to get out - too easy, mine fell out on their own and I had one removed for an endoscopy, so I've swallowed four, plus one last year but to drain bile rather than for feeding. But the feed upset my stomach terribly; my stoma output turned to water, and the bags started falling off because they were wet so much (and I never usually even get leaks). After a few days the doctors and dietician gave up on it. It was also really inconvenient being hooked up to it for two thirds of the day - especially with a leaking stoma, since the feed had to be stopped to shower or even get clothes on and off over my head. I never want to try NG feeding again.
Sorry it went so badly but I give you credit for trying.:hug:
 
Hi. We might be getting an NG tube for Hannah next week. She is doing well drinking the formula but could probably use one more can that we just aren't getting into her every day. She also seems to be developing a little bit of constipation, as it's been tough to get almost any water into her on top of drinking the formula.

I guess I can see the utility of doing it, because we are just at the beginning of 8 weeks exclusive EN and then when we try food it looks like we may be doing 50% for some time.

I see there are more little ones who have tried the tube. I just wanted to say hi, and to ask how it went for you with the insertion and adjustment period.
 
Hi Pilgrim,
Grace had an n-g tube for five months before moving to a g-tube.
We had a home health care nurse come out once a month and insert the tube.
She also took vitals, drawl blood and such.
Just to warm you it was very traumatic for her and us. We all had to hold her down while the nurse inserted the tube. Of course it took two times to get the right placement. After I left and cried and said never again but.............
Once she was getting her formula through the tube and got use to wearing a backpack and I no longer had to nag her to keep drinking it and was wonderful.
It was totally worth it for us and her.

It will take a week or so to set up delivery of all the supplies.

Also some docs do the tube placement in the hospital. So be warned you might be their for a day or two. We did it at home and was just fine. The nurses will go over board in making sure you know how it all works and what to do if it comes out.
 
My daughter is a bit older (13) when having the NG tube. It was put in at the hospital. I am glad we had it done in there, especially with the difficulty she faced. I don't know if I could have put it in myself for her. Kudos to all of you that can. Needles, no problem, tube insert, I wanted to gag myself.
 
Thank you, Farmwife. It is good to know it was worth the effort. I was so sad for you and Grace just reading about the insert. This is tough business.
 
SupportiveMom, I think I would feel more comfortable with it being done in the hospital, too. We'll be there next week and I think they were trying to get me used to the idea on the phone the other day. It was made to sound like a walk in the park!
 
My SIL is a nurse. She also treats as a walk in the park. Procedure is pretty easy compared to others. (One nurse told me she would swap a NG tube any day for a PICC flush as the PICC is too close to the heart in her opinion for nurses to be dealing with. Kids are resilient. I'm sure there will be a few bumps but will go pretty smoothly . The insertion of the tube was the easy part for us compared to her keeping it in & down.
 
I must say I feel for all you young ones having to go the NG tube route. I went into hospital for mine to be inserted initially. I was an adult though. It brought tears to my eyes the first time. I learned how to do it myself without issues though. I learned to press my fingers on the skin below the tube nostril. pull down so fingers are more over the teeth area. Put tube up and whilst pulling down on the skin under nostril the sensitive bit of tissue up the nose which reduces us to involuntary tears is also shifted down so there is no collision between end of tube with its guide wire in and that very painful area. Once you get it past there, the only thing left to do is grin and bear swallowing it. Easy after the first time.
Good luck with your tubes and young ones. I sincerely hope it helps their digestive tracts heal.
 

UnXmas

Banned
I found the insertion easy. Though I'm an adult, and I'd imagine it would be hard for kids, because it's scary having something like that done. But if you can keep calm, it's not too bad, physically (though I would think it could be if you have any kind of throat problems). For me it got easier with practice too. My tubes did fall out a couple of times, and I had one removed in order to have an endoscopy, plus I'd had one to drain bile (rather than to feed) on a previous hospital admission. By the last tube, it was done in a matter of seconds. Keeping calm and breathing is the most important part. I'd have a drink in my hands, with a straw, and the nurse would tell me when to swallow. The final tube I had inserted, between the nurse and myself, we managed to get the timing dead on, and I did it in one swallow.

The difficulty is that it's natural for children to panic when undergoing a procedure like this (and probably natural enough for many adults too). I think that's when it becomes difficult.

So although my digestive system couldn't tolerate the NG tube, and it was a failure for me, I hope I can provide some reassurance that the insertion isn't necessary terrible. I also found that I couldn't even feel the tube once it was in - once they've taken the wire out, it was like it wasn't even there; I could talk and eat and drink with no discomfort. I'm not sure if my experiences are typical, but it was certainly a lot more comfortable to have inserted, have it in, and take it out, than I imagined it would be.
 
I think I would feel terrible if I had to watch and try and support a child going through this for the first time. Some though are fine, whilst others seem to feel a bit 'invaded'. They can see the tube and feel it inside and might find this uncomfortable and frightening.
I personally have throat issues (blood blisters and ulcers) so at times the tube was a little uncomfortable. Aside from that, I agree with UnXmas, it's hardly noticeable after a short time. Only thing uncomfortable are the peculiar looks you get from the average human. Some of the comments are quite funny too. Especially from children.
 
I'd be curious to hear some of the comments you hear and maybe even some replies - the ones you speak and the ones you think...could be worth a chuckle?

I'm not sure how it will go with Hannah. She's really, really good-natured and accepting most of the time. For a short while when she was really anemic (before diagnosis) and sick of being poked for blood all the time she started kicking the lab techs full force. I was shocked to see it, but I understood. Now I take off her shoes before blood draws, but she's been ok these last few months.
If she gets the tube inserted next week it will be the same day she has a small bowel follow through, and blood work, and who knows what else. Hopefully she'll still have patience.
I cancelled her spot in an early kindergarten program this year, and so we will have a year or more depending on how things go to adjust to Crohn's before there is a classroom of kids asking her about the tube.
I'm really glad that it is not bothersome after insertion. That is a comfort and will make the process easier for me anyway. If I'm calm it'll help me keep her calm.
 
We're back again. She never did need an NG tube and did the full 6 weeks orally. It worked well, after that we went down to 50% EN and started AZA and then stopped AZA after a bad reaction - so here we are again. She's going to have a go at 100% EN (EEN) again in hopes of a good remission.

We are looking at maybe adding Methotrexate or Humira but I do hope we can avoid it by cycling EEN and 50-75% EN for 6 week periods.

Would be interested in hearing stories if anyone has experience.

ETA: I posted this in the wrong spot anyway as for now we aren't using a tube. OOPS! But maybe there are still stories...
 
Sorry to hear of the issues with AZA, I don't do that one either, unfortunately. Good she can drink her liquid feeds. I hope one or other of the meds can help too. But maybe she just needs a lot more liquid feed time to get her in to remission and well again.

Good luck
 
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