Help, I'm fearful of the NG tube

[Racoon2000]

Hello

I'm heading in to hospital in a few days for my first NG tube feeding.
Having it for a month to see how it goes, and it's being reviewed after that to see if I need it longer or not. I am feeling really scared now. This will be my 6th hospital admission for Crohns this year.
Staying in hospital until it's established then being discharged with feed for home to run overnight.
So far my disease and complications and surgeries have been hidden from the outside world with a fake smile and a good bit of make up. This time I won't be able to hide it. They are leaving it in for the duration.
I know it sounds really vain but does anyone know if I can attach it on my cheek more discreetly? I've seen some pictures of NG tubes with loads of tape all over the nose. I have a really big nose already and don't want to draw more attention to myself as I'll be having to work after getting home. Sorry, I know this sounds really silly, but it's concerning me. I have two young children too and don't want to scare them.
Is there any other advice for having the tube, any tips and advice greatly appreciated.

 

[Clash]

The ng tube usually attaches to the side of the cheek with a piece of tape then around the ear.

My son did ng tube feedings but he put his in every evening and took it out each morning. Did they not give you this option? It was a quick process, within a week, he had it in and taped within a minute or two. The nurses at the hospital showed both him and me how to insert. It was difficult, at home at first, because they sent the tube without a guidewire. The home health service sent those out to us then it wasn't an issue at all.

I used to have a pic of my son wearing his but he would tape about mid cheek then wrap around the ear.

Hopefully others will be by with their experience. Good luck.

 

[Maudddy]

Heej,

I walk around with a NG tube every winter, I have it taped on my nose because I don't like the feeling of the moving tube when I swallow or anything but that's a personal thing and I know people who don't mind it. And than also I have a small round tape thingy with is special for NG tubes with wont irritate the skin so much. Look for brownish tape so that it wont be that noticeable
I hope you can see it in the picture I attached. also I decorate my NG tube with ioring beads (? don't know if that's the correct therm) and a small strip of fabric because I know people are watching so why don't make it something fun to look at. It also helps make it less scary for children.

Good luck!!

Maud

 

[Spooky1]

I always fancied dressing mine up with a chain and nose ring looking rather Punk like. I never did though. Maudddy looks good in hers. Sometimes I think it best to wear a good, funny attitude with it. That's the best. I used to tell children that I communicated with my relatives on Mars with that. They always wanted to know what it was. People do stare though. I never liked that.

You will be used to it soon, and good luck with it, and better health for next year.

 

[Racoon2000]

Thank you for replying to my worries.

Clash, I had hoped I could put the tubes in myself too but been told this is not going to be possible. I have a rare case of Pulmonary Crohn's, as well as intestinal disease and recently diagnosed with Bronchiectasis too. Not sure if their decision has anything to do with any of that, and any risks of me doing it, or maybe just the local protocol where I am.

Maudddy you look so awesome! Thank you so much for posting a photo. I don't think I will look as cool as you do but I might try and decorate mine now too - maybe in time for Christmas.

Spooky1 I really like the idea of that. My son has been quite concerned for the past few days so a story like that would certainly rock his little imagination.

I guess it's just fear of the unknown. It's been such an awful year I probably am worried about going back in to hospital again in itself. Do you ever feel anxiety just from the thought of an admission?

Thanks again for taking the time to reply. Your advice and kindness have really helped me not fear it as much now. xx

 

[Spooky1]

I refused to be admitted just last week. I find the hubbub of hospital wards way too overwhelming when I'm ill. There are too many others there that have very little wrong with them and have 101 visitors too. Also, there is the chance of picking up other bugs like C-diff, rotovirus, Norwalk etc when on a gastroenterological ward.

I can suggest that you try and organise a child's naso-gastric tube too. They are smaller and thinner than the adult ones, and if the Crohns is high up in the digestive tract then the smaller the tube the better. You might want to phone ahead so they can order you one or have one ready for the procedure.

I think to start with I would get festive with the tube, at least when out. It sounds such fun to use it to celebrate xmas with, I'm sure your child will want one too, lol.

Good luck and let us know how you get on with this.

 

[Racoon2000]

Hello. I meant to post on how I got on with my NG placement. Unfortunately I've been pretty unwell since Christmas.. Suffered 2 chest infections in the last 6 weeks and my bowel issues have just totally erupted since getting the NG. I'm currently on my 4th tube as I keep either throwing them up or coughing them up. Had the feed changed 3 times but we're no further forward than I was 8 weeks ago when they put it in.
Now my dietitian is talking about giving me a PEG tube in the hope it won't affect my chest and hopefully allow it all to get better. The doctors are discussing it and I'm waiting to hear the outcome.
Been signed off work again as my GP is concerned it might develop into pneumonia if they don't get a handle on it.
Has anyone had a PEG before? I stupidly you tubed it and freaked myself out!! They do it in endoscopy under sedation, not general anesthetic!! It sounds barbaric. I hate endoscopy sedation, I always remember everything, it never puts me out of it.
If anyone has help or advice I'd be grateful.

 

[Spooky1]

Yep, I threw my tubes up often so it's PEG for me. That's heavy sedation for the peg. Not one memory of it although I have to forewarn you that it is sore to start with. I have a low profile Corflo Cubby device which is neat and tidy. Some people say that if you have only fluid going in then only fluid comes out. It's that way for me. But then that's life long Crohn's for some. Others fair much better and have complete success with liquid feed.

good luck, and if you want to ask anything more just post on here and I shall do my best to come running (if I'm not running for the loo).

 

[Racoon2000]

Thanks Spooky1.
How long have you had your PEG for? I didn't realise there were different types till I started researching it. Did you have a choice about what one you got? It feels like a whole new learning curve. How do you find it day to day? Anything I should watch out for? I read that it takes about 3 weeks or so for it to settle. Does it continue to hurt after that? Are you on bolus or continuous feeds?
Do you know how long they keep you in hospital after the procedure?
I have such awful experiences with scopes, it's anxiety mayhem! I hope they don't scrimp on the midazolam!

 

[Spooky1]

I've had my peg for around 11years now, I think. First I was given the 'hose' which was really long for me then it was changed after 3 months for a low profile one. There can be a few issues with it but many have no issues whatsoever. It can also vary as to settling for each person. I went home after four days, but some say it's a day procedure. I have liquid feed through 20hours per day, others seems to do the overnight only feed. I discovered that I was awake with it over night due to energy going in I think. If I did sleep I had vivid dreams.

Just tell them that you are worried about being awake. I'm generally an awake person but was totally out of it for the procedure. Believe me they don't want to risk you being awake when the pop the knife in. You will be totally unaware.

 

[Racoon2000]

Thank you. I'm still waiting on them to get back to me. They seem to take ages. Well, it feels like ages since Monday as I am feeling so terrible. It took long enough to organise my initial NG tube, but perhaps there's other stuff they need to sort out. My case isn't exactly straight forward and had lots of complications.
Are you on EEN then? Do you not eat at all? Do you have a back pack to carry your feed around in? I'm overnight feeds for my NG but not getting enough in with the time. If i increase the rate I generally feel really nauseous and then throw it up so got to keep it pretty low. I find that it's hard during the day to feed as my kids are still small and demand a lot of hands on attention. I might just have to bite the bullet and do it though as it's not enough for overnight. Which feed are you on? I noticed you're in the UK too. They had me on standard Nutrison to start with but then switched it to Energy for more calories but it caused a lot of problems so now on Peptisorb which is apparently less work to absorb. I can eat rice cakes, chicken, eggs and rice pudding but only in very tiny amounts. If i eat anything larger or off that list I am in trouble.
I think I might be in a bit of denial thinking that I don't really need this when in actual fact i do. It was meant to just be a short term thing with the NG and is now turning into something longer. Don't think I'll ever be able to eat properly again at this rate.
Thanks for getting back to me, I really appreciate all your advice. Struggling to get my head around it all.

 

[Spooky1]

Hi, Racoon,
I can't use the backpack as I have severe fatigue and arthritis of the shoulders. I tend to stay in with this health. Mine is set low too, 50mls per hour. I haven't been on any of those feeds you mention and I'm just changing from Vital 1.5 to EO28extra and some fruity juice type drinks.

I do have salmon and potato or mackerel and potato. I've also been trying a small amount of home made sauerkraut as this is the ultimate probiotic for the intestine. Think I had loads of bad gut flora die off and am back to my usual crohns output

It will take time to organise esp if in the UK, I can never get an appointment these days nor do the IBD nurses get back to me. I have also had problems getting the dietician to call me back. Oh, the NHS!