Scared... NG tube

[nellie456]

So I'm getting an NG tube next week. I am petrified. I keep hearing people feel like they are choking and can't sleep.

I just want to no you experiences.

I hate hospital stays as it is and every time I think about Tuesday I burst into tears.

I'm only 17 and have Crohn's disease.

This will be for feeding as I'm loosing weight.

 

[Clash]

I'm going to tag tesscorm, tagging her should bring her by to give her sons experience with an ng tube and I believe he was around your age when he started EN.

My son is 16 and he has had an ng tube but only before his MRE. The tube went in fine and fast and he had no problems with with insertion. They pushed the barium too fast trying to ensure he got the needed amount and this made him sick. But if you are doing it for EN you set the pump for the speed you can handle.

 

[brandyrie]

Hey there,
I have also had to have an NG a few times and they can be scary but you will get thru it. I would ask them to numb you a little before they insert it it helps with the comfort. I also used chloraseptic to help numb the back of my throat. I will keep you in my thoughts!

 

[Tesscorm]

Hi Nellie,

So sorry you're having to deal with this, my son was diagnosed at 16 and used an NG tube with the elemental formula to induce remission. I'm just going to copy below a recent post I made for MeganGeddy , she is also a teen getting starting EN as a treatment. This has been a great treatment for my son and, hopefully, will be for you as well. Keep in mind that you can still follow the same treatment without the NG tube - there are formulas that can be taken orally (shakes). From what I've read, they don't taste 'great' but are tolerable - there are lots of kids on these shakes as well as lots using the NG tube.

My earlier post is:

My son has used an NG tube since May 2011! So lots of experience with it... But before you get scared at the length of time , let me explain...

He was 16 when he started, did six weeks of the formula only through the tube and, since then, has continued with the formula on a supplemental dose as maintenance (until very recently).

He was taught to insert and remove the tube himself, so would insert it nightly and remove it in the morning. It truly wasn't very hard for him to learn and, within a week, was taking him just seconds to do in the evening (removing it is very easy... it just slides out). (But, keep in mind, everyone's different, some people do have a harder time with the insertion and choose to keep the tube in.) I agree that the size of the tube is important... Stephen's tube is 6FR - this is apparently infant/child size BUT, Stephen's 5'11", 170 lbs and it works fine for him! It's about the size of a piece of spaghetti. It's also very flexible.

The toughest part is getting it past your gag reflex... while they/you are inserting the tube, drink some water (through a straw), as you swallow the water, you sort of swallow the tube at the same time. Once past that point, it's then much easier to continue inserting. Sometimes it is also easier to use one nostril compared to the other. My son ALWAYS uses the left side.

Now, why my son is STILL doing it... The exclusive period (six weeks of no food) helped him tons!! It took away his symptoms, he felt great, got lots of energy back, etc. His doctor tried to use EN as a maintenance treatment - so, after the six weeks, he added back a regular diet but continued with the EN 5 nights a week, at half the dose. He has done this since. He hasn't had a flare since diagnosis, however, MREs show that there is continued inflammation in his small intestine. To treat the inflammation, he recently started remicade. For now, he is still doing the supplemental EN with the remicade but we are beginning to reduce it so that he's done with it within the next few weeks (before he leaves for university).

If you absolutely cannot tolerate the NG tube, there are also drinkable versions of the formula... Peptamin, Elemental, Modulen. From what I have read, they are tolerable but, perhaps, not great tasting. (IF you can learn to insert the tube yourself, that could end up being easiest... given the choice, my son finds the tube easier than drinking a bunch of shakes.) One downside to doing the overnight tube is that you will have more hunger during the day (as you get all your 'food' overnight); the shakes give you the flexibility to drink one whenever you're hungry. To alleviate some of my son's hunger, he was allowed clear fluids (gatorade, ginger ale, jello, freezies, broth, etc.) - this really helped.

Here is a link to another thread, Kids on EN, in this thread, I included a link to a youtube clip showing a girl using an NG tube. She is very precise and shows you EXACTLY how its done (one comment, she is SO precise, it seems to be a long process - truly, it takes my son 10 seconds to insert the tube and a few more seconds to tape, etc.)

http://www.crohnsforum.com/showthread.php?t=36345

My son did find the sensation of the tube in his throat a bit annoying (not painful at all) at the beginning but, this went away after just a day or two.

If you have any questions, feel free to tag me (use "Tess" in your message) or PM me.

Good luck and keep us posted on how it goes on Tuesday! :ghug:

 

[ryansbronco]

I had one for a week. Being at the hospital they check on you almost too often. Mine was rushed in at the ER. Once I got up to 4 north the head RN adjusted it. I could feel it scratching before she adjusted it. I was so drained that I could even sleep with it. Have the CNA pin the tube to your shirt. It helps keep it from bothering your nose.

 

[Mylittlesunshine]

Hi Nellie
So sorry your going though this
My Lucy was 3 when she had her NG
Tube fitted, we didn't have any problems
With it, infact once it's in she didn't know
It was there . Now she has a mickey button.
Good luck for Tuesday insure it will go fine.

 

[nellie456]

Hi, thank you all so much, you have all really helped me feel so much better about Tuesday. I have tried ensure, modulen and fortisip all making me feel sick. And now they don't think that the treatment im on at the moment is working for me (infliximab) so they are starting me on the ng tube to put more weight on as i am very under weight. They think once i have gained weight my symptoms my settle down and treatments may start working better.
Thanks again to you all

 

[Twiggy930]

Hi Nellie,

So sorry to hear you are dealing with this rotten disease. Just wanted to let you know that my son did EN via a nightly NG tube last year when he was 10 years old. He learned to insert the tube himself in about 1 hour and if you asked him to do it right now he would without hesitation, it doesn't bother him one bit. Make sure they use the smallest tube possible as I think this makes the whole process a lot more comfortable. My son used a 6Fr tube with the guide wire removed prior to inserting, it was as thin and as flexible as a piece if spaghetti.

I really hope Tuesday goes smoothly for you. Good luck!

 

[nickle2a5]

keep Vaseline handy for nose and lips. Also some throat numbing spray like Chloroseptic.

 

[kiny]

I had a feeding tube long ago, it's really really nothing to get worried about. I did feel like throwing up a bit at first when it went down, but it's really not bad, it's no worse than putting your finger in the back of your throat for a second, you don't actually throw up, it's that gag feeling, after the tube is placed you don't feel anything and you relax. It's nothing to worry about at all, trust me, you'll wonder afterwards why you even worried.

Also, remember to breathe relaxed, your reflex will be like you can't breathe passed the tube, just relax and breathe through the nose, no problem at all.

 

[Mylittlesunshine]

Hi Nellie
How did it go x hope you found the tube
Fitting easier than you thought.
Hugs x x

 

[nellie456]

Hey, it was painful going in and my nose and throat is still sore. Hospital gave me some spray for my throat which has made it better. Was very happy and proud of myself for doing it without my mum or dad. I also had my canula put in without my mum as well. It only hurts my nose and throat when i swallow but hoping it will ease off over night.
Thanks to you all so much for your support xxx

 

[Mylittlesunshine]

So glad things went well, are you still in hospital?

 

[nellie456]

Hiya all, so i get home Friday evening
My NG tube is going very well, i have to keep it in for 2-4 weeks. I have to see my IBD nurse on Wednesday for my azarhioprine blood test and then the consultant Thursday, this was just a routeen check but has turned into a 'how the NG tube is going' check. The consultant said that if my blood results are good and my weight is improving i will be able to do half modulen and half food, i really hope he lets me eat next week as in sat here writing this while my mum is cooking chicken curry and rice which smells delish.
I understand that it will probably be a low fibre low res diet until the tube comes out but i love rice and potato a lit so i think ill be fine.
I might be stopping my infliximab as it looks like its not been working for me so now there talking of operation but he also said that just putting more weight on could help.
I don't no how true this is so should like to no if you have seen this but i saw something yesterday that modulen can take you into remission, is this true?

Id just also like to thank everyone on here who supported me before i had the tube put in..

 

[Twiggy930]

Glad to hear you are back at home.

Exclusive enteral nutrition (EEN) has been shown to induce remission. From what I understand it must be done for a period of at least 6 weeks for this to happen.

 

[lizbeth]

Glad you're back home, what you are saying sounds quite positive so I'm happy things are going better for you though I hope you don't need the surgery. Will keep my fingers crossed that everything goes to plan, good luck. :ghug:

 

[Spooky1]

EN is certainly one way of making sure you get all your required nutrients into you. If you're having issues with Vomit/Diarrhoea then you become poorly and the body starts to flag, and all with a horrid disease going on. I had one for a couple of years then changed to the PEG. Great you're home. Hospitals are forever coming around "obs" (observation), far more relaxing at home. Great you like potatoes, they go well with boring plain salmon for starters. Too much rice can be a laxative, so beware.

Hope all goes well.

 

[nellie456]

Hi. So I can't start to eat yet so just got to have modulen for another 2 weeks and then they may see about me slowly introducing food again. There also going to let me try one more dose of infliximab before we come to a final decision that its not working.

 

[Spooky1]

Its a horrible disease at your age isn't it. Brings back loads of memories, but I didn't get my tube till I had failed everything and had numerous resections. Its disappointing isn't it with just liquid food. must say I missed the occasional chocolate 'high'. are you allowed clear boiled sweets. erm... think I pigged on a few of those without asking permission. one word though, sweets with real fruit juice might have fructose in. I can't do that nor lactose etc, etc, etc, which sort of seems to be where you are at the mo.

Crohns is so difficult. what works for one may not work for another. I failed it all, so EN for me, and I do have potato and salmon, bit of other fish too, but sometimes react to that even.

I'm wishing you luck and try not to let the boring stuff get you down. it might just get you feeling better when nutrition and weight are up.

 

[nellie456]

Hi, yep. If Iv felt a little hungry Iv just had a boiled sweet or lollie ice. Saying that though I haven't been that hungry. I'm just hoping I don't need to have an op. it's not I don't want one if it will make me better but it just scares me the thought of an operation at 17

 

[Spooky1]

I know, but tbh loads of us have had surgeries and were so supportive of each other on here. at least we know what ur going through even if friends and family don't know quite what ur experiencing. were with you all the way.

 

[steffers]

Nellie456

Is this going to be long term? I had a feeding tube for around 12 weeks when I was 14 and a brilliant doctor realised that it wasn't the easiest thing for a teenage girl to deal with so he arranged for me to have a feeding 'peg' inserted directly into my stomach which was a lot easier to deal with xx

 

[nellie456]

Hi, they have said I'm going to have 4 weeks on just modulen then start reintroducing food slowly and see how I am when I'm eating again.

 

[Spooky1]

I'm sure you're gonna be fine. We count the days down for peeps on here, and support you all the way. tis a good community to be with, believe me.

 

[nellie456]

Thank you. Everyone on here is very supportive and helpful and really do make me feel more confident

 

[Spooky1]

you're welcome, I love this site and it loves yer back lol

 

[rdrakester]

Hello nellie456 - so glad to see things went well for you with getting the NG in place! I never had an NG tube but they inserted what was called a lifeline (upper right side of my chest) and fed me TPN thru that for several weeks. I am 5'9" and at that time generally weighed around 125-135 but was down to 94 pounds. I have had crohn's 29 yrs now (I am 53); diagnosed at age 25 but had been sick about 2 yrs prior. Hope all is going well for you and that you are able to gain weight!! I took many many drugs (sometimes as much as 26 total pills a day) and had many resections before finally going into remission about 15 yrs. ago. I wish you well!!!

 

[nellie456]

Thank you so much, I have started gaining weight, I can tell by the fact I can't see my ribs any more. I'm just hoping gaining weight and resting my bowel for about will help with my symptoms.