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Problems with my NG tube

Ki3

Ki3

Hi,

So I have an NG tube while im on a liquid diet, and it is driving me crazy! The other night I woke up to find the lid had come off my tube and it had leaked water and stomach contents all over my bed and my back. Last night my tape off and when I woke up my tube had come out by about 20cm, so I had to push it back in.*ouch*

I really hate having an NG tube and I've still got 3 weeks more to put up with it.
Im only a young teen yet I found myself sitting in the corner crying as the tube has taken away my independence and someone is always helping me test it when I dont want any help, I wanted to be alone and it depressed me.
Any advice? Many thanks xx
 
lizbeth

lizbeth

Hello Ki3

I'm really sorry you're having trouble with the NG tube, 3 weeks left to go, does that mean 3 weeks behind you? If so just think of it that you're half way through.

Do you have a specialist IBD nurse at whatever hospital looks after you? Maybe you could call them for some moral support? Who is it that has been helping you test? Do you feel able to talk to them and explain how you feel?

As a parent of a daughter with a chronic skin condition I get very frustrated that I can't take her pain away, away she's 22 now but has had it all her life, I still want to take care of her but she doesn't want to be fussed. It's hard knowing I can't take it away for here maybe that's how the person helping you feels?

Keep your chin up, the few weeks will pass and you will get rid of the tube. Take care :ghug:
 
Twiggy930

Twiggy930

Location
Canada
:hang: Ki3

So sorry to hear that you have been having trouble with your NG tube. My son did enteral nutrition (EN) with a NG tube for 6 weeks last year, he was 10 years old at the time. It was a hard go but he made it through and it really helped him.

My son learned how to place his own tube and would put it in every night and the formula would pump in as he slept and then he would take the tube out every morning. Has this been given as an option to you? It might be a way for you regain your independence. Inserting the tube took my son a little getting used to but after about 5 days he could insert it in 12 seconds with no help from anyone.

PM me if you would like to ask my son about it (he is close to your age) and I will get him to write you back.

Hope it gets better for you.
 
Ki3

Ki3

Thank you all so much.

If you want to know a bit more about me, firstly look at 'My story' the thread i created here; http://www.crohnsforum.com/showthread.php?t=50153
if you still want to know anything after reading it, feel free to ask.
We do have nurses, we also have community nurses who come to our home to make sure its going ok, and I said I dont have any indipendance as my family always help me with the tube and hooking up to a feed when I can do it myslef, I have told them but there still a bit weird about it.
I cant take my tube out in the morning or at night, as I have four feeds during the day, and a feed that lasts the whole night. I dont think I would enjoy having to put it back in as I find it painful but It would be nice to have some time where I dont have to worry about the tape coming off or anything like that.

Again, thanks for your feedback :)
 
Ki3

Ki3

Yeah thanks sleeping on the tube is still awkward but I guess that's something I'll just put up with. Were trying out the backpack today, so I can feed while were out and about. I worked out its 18 days till the tube comes out!

Thank you for asking :) How are you doing?

Xx
 
lizbeth

lizbeth

I'm okay thank you, I'm coping with my symptoms at the minute and some days are better than others. Thank you for asking.

So how did it go with the back-pack? I'm curious to know how you got on, also where did you go, was any place nice? I promise I'm not nosey just interested :) :lol:

17 days to go now....brilliant :) :dance:

How are things working out with your family, have you been able to take a little bit of control yet?
 
Ki3

Ki3

Good :)
We went shopping with the backpack, went really well. Took me a few mins to realise that the beeping was my backpack lol!
I asked my dad if he would take the day I have the tube taken out off work. But instead were taking it out a the night before :-D
 
Ki3

Ki3

I think its thirteen now! Under two weeks omg! I can't wait! There are so many foods I want to eat, but you got to introduce them slowly so I'll have to wait before eating everything, dont want to get ill again!

Aaagh so excited! Thank you!

:D
 
Ki3

Ki3

Yeah :3

Actually I found out that the day before my tube comes out is a bank holiday so that my dad doesn't have to take a day off work, were taking the tube out on the sixth! So 11 days to go ahahhahahhaha!!!!
 
T

Tenacity

Ki3 - I read how uncomfortable you are with the NG tube, and was wondering what type of tube they used for you. Is it very narrow, flexible and soft? Can you find out the name of it?

I just want to make sure they are using the most comfortable tube for you. A really good one is made by Kendall called the Argyle Indwell.

You are almost to the finishing line! hope the next 11 days just fly by for you :)
 
Ki3

Ki3

All I know is its a silk tube? I dont know who its made by but its says 'corflo/merck' on it, dont have a clue what that means but thought id say it! lol

its not that bad, before this tube I had a plastic one as the hospital didnt have any silk tubes, and when they put it in they scratched my throat, and as im on immune supresent drugs it will just take a while to heal, so still hurts. But I dont mind, its coming out in 10 days!
 
CarolinAlaska

CarolinAlaska

Holding It Together
That is great that you're almost done with your NG tube... what are you going to do when you get the tube out? Will you be able to drink the formula? I know you will have to reintroduce the foods slowly. My daughter got her tube out at the beginning of the month, but she is still on the formula. We have to mix two different kinds to make it palatable for her. She is doing good with foods but has no appetite. She is gaining weight really well, which is very good as she is very underweight. She has no pain or GI symptoms any longer!
 
Ki3

Ki3

I think I have to drink two drinks a day for a week? I dont care as long as I get to eat food!

8 days to go! :D
 
Ki3

Ki3

Its weird to think this time next week ill be EATING breakfast, not hooking up to a feed. I'm really annoyed with this tube so this week better go quickly!
 
lizbeth

lizbeth

Just keep positive, you can do it and then you can be proud of yourself for getting through it :) 6 days left yaaaay :) Keep smiling.
 
Twiggy930

Twiggy930

Location
Canada
:hang: You are almost there!!!

Let the count down to food begin! The first thing my son had when he could eat was a bowl of noodles with beef broth. He thought it was the best thing he had ever tasted.
 
Ki3

Ki3

I have been told what I can and can't eat and must have 3 drinks for the first 3 days after that 1-2 drinks a day. I didn't want any nurses to come so I just take the tube out myself.

3 or 4 days to go! :D
 
Ki3

Ki3

Thank you all for the kind words xx

Taking it out wasn't the nicest experience, felt sick as it went past my throat then the end got caught in my nose which was painful but its out now and im really enjoying food hahaha xx thank you all xx
 
Ki3

Ki3

I'm doing fine thank you xx sometimes get a few little stomach aches but nothing compared to before. I'm so happy, since I was diagnosed I've never been in remission and now im getting there yaaay >.<
 
lizbeth

lizbeth

That's great news I'm so pleased to here you are getting on well, remission here you come. Please keep in touch and let me know how you are getting on. :ghug:
 
PixieGirl

PixieGirl

Hi I'm PixieGirl. I just read your story and I can relate to it.
I couldn't stand my ng tube either.
I was wandering if you would like to chat sometime.
Please pm me.
do you have facebook? :)
 
Ki3

Ki3

Hey! Havnt posted in a while, so im updating. After the tube was out everything was amazing, I could eat with no pain, I was free from every symptom! I even went on holiday and swam every day for a week! But unfortunately my symptoms are starting to creep back.... It always starts little and gets worse and worse, and that's what's happening now :( I am terrified they will put me back on the tube and preying ill start remicade..
 
lizbeth

lizbeth

I'm glad you had some respite from symptoms but saddened that they are starting to appear again. Has remicade been suggested as there next step?
 
Ki3

Ki3

Yeah we were going to start it before, but instead they did the liquid diet, so im guessing remicade is next :)
 
Ribo

Ribo

I am amazed that your treatment included an NG tube without having to be at least supervised by an outpatient nurse. I've had them several times for short terms (just a few days at a time) over the past year and I can imagine having to maintain it myself - each time mine was pulled while still in the hospital.

I also can't imagine pulling it myself!

You're an amazing Teen to have handled all that, excellent work and great to hear you're doing better!
 
Ki3

Ki3

Thank you. I hated pulling it out, and I know its sounds weird but I knew more about it thanthe nurses.. one evening they pulled on the syringe, and it was very hard to pull, they said it was air in my stomach so theypulled it to then end, the when they disconnected it , it was like apainful hiccup up my nose. It wasnt air, it was su tion as the hole at the end of the tube wascovered, but they thought it was air sompulled and pulled for a while. When I realised I knew more than they did, I no longer let anyone else handle it.
 
lizbeth

lizbeth

When do you have a follow-up with your GI? I don't know what the usual course of treatment is but I hope they don't put you back onto the tube, will keep my fingers crossed for that one. Take care.
 
Ki3

Ki3

Thank you, we dont have a set appointment but my mum is ringing today so we might get one I guess
 
lizbeth

lizbeth

Good, hope you can get sorted sooner rather than later. There might be an IBD nurse at your hospital that your mum could talk too, mine can fast-track an appointment if necessary. Let us know how you get on.
 
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