PEG - still unsure but have told the nurses to go ahead and get the ball rolling

[Worsleybird]

Neuro nurse and dietician came round yesterday. Consultant keen for me to have feeding tube. I'm not keen. I dont have swallowing issues but do realise what what they said that if one left it too late this wouldnt be able to be done. Dark thoughts of well its a way out if you cant eat or drink, but on the other hand I have children so have a responsibility to keep on fighting. Anyone else been in doubt and gone through with it anyway? I think I am frightened of having the guide tube in my throat, infection at the site, COVID. I was also surprised by the nurse gesticulating with her hand and the tube seemed to be about
a foot long, she mentioned getting a belt to secure it round my waist. Is this right?

[matthew55]

I have had a tube for ages and never had an infection. They sedate you during the procedure so you will not notice anything. I have a catheter holder that I wear around my tummy and since I started using it I have had no problems with my PEG. I forget I have it these days but I thank God I had one put in. ✔️xx

[Ellie]

I'm sorry you're feeling pressure to have a feeding tube, particularly as you don't have issues swallowing. Are there any concerns about your breathing? That's another important factor in the timing of having the procedure.

If your swallow and breathing are not an issue right now, take your time to make the decision and, more importantly, be comfortable with that decision. Talk to the Dietitian, do your own research, ask us any question you like, to allay your fears. The waiting time for the procedure can be quite some weeks or months in this Covid era, so do bear that in mind.

Yes, you will be sedated, so won't be aware of the endoscope or tube and guide wire but, if it's something you know you won't get your head around, ask the Dietitian about having a RIG procedure to place the feeding tube, instead of the PEG procedure. The outcome is the same, a feeding tube, but in the RIG procedure, the tube is placed from the outside in.

This is my feeding tube, a low profile button, which I got a few months after the standard long feeding tube, once the stoma tract had fully healed. It's a bit more involved as it has to be changed every 6 months or so, but it's a 60 second, painless switch, which my husband does but I love my neat little button.

MicKey button.jpg

Love Ellie.

[Worsleybird]

Love that little button. Is that in place of the long feeding tube? just so much more discreet. So if I went for a PEG (thanks for the reassurance guys) would I then be able to be fitted with this little button instead of the long feeding tube? A lot to get my head around.

[SallyAnnB]

Gosh, Ellie, that's neat and tidy. Makes my RIG tube and fixing plate look a bit unnecessary. I agree with your advice not to be rushed into anything. My hospital (QMC, Nottingham) doesn't offer the PEG procedure, so I was only offered the RIG and I was talked into it by the nurse and the dietitian, about six weeks before we were due to go away on holiday. There was very little waiting time - three weeks as I recall - so I had the procedure, which lasted 15 minutes and 55 seconds, because I thought the medical professionals would know best. Unfortunately, the stoma became infected, which rather spoilt my holiday on account of the pain I was in, and it took two courses of antibiotics and some fungicidal cream to clear it up, over a period of about ten weeks.

The nurse had told me that I might deteriorate "suddenly" which is why I went ahead, but four months later, I haven't found it necessary to use the tube for feeding purposes. To my mind, you would know if your breathing had deteriorated to such an extent that you couldn't spend fifteen minutes on your back, fully conscious. The tube has to be replaced for the first time after twelve weeks. When the twelve weeks were nearly up, we contacted the stoma nurse to find out when she was coming to do it. A good thing, because it turns out I wasn't on the list! It hurt a little when she pulled it out and it bled, which apparently it isn't supposed to do. She left saying to dial 999 if the bleeding didn't stop soon. It did, but that wasn't very reassuring.

I don't want to put you Worsleybird off having a PEG and I don't want you to delay unnecessarily, but I want to encourage you not to be browbeaten by the medical staff. It's your body and you have a right to be fully confident about what you're having done. I have a dangly tube which I tend to tuck into my bra as my stoma is a lot nearer my bra line than my waist. It depends where they find your stomach! By the way, you still have to swallow a tube when having the RIG and it's a bit unpleasant when it's going down, but once it's in place, you don't feel a thing.

[Ellie]

Is that in place of the long feeding tube? So if I went for a PEG would I then be able to be fitted with this little button instead of the long feeding tube?

Yes, the button is still a feeding 'tube' and yes, once the site is established, your hospital should swap your long tube for a button, if asked.

[Ellie]

SallyAnnB If you're interested... Because you had the RIG procedure, your tube is presumably balloon retained so the next time you're due for a tube change ask in advance if you can get a button instead - there is a connecting tube used when giving fluid and feed, but it's then removed.

Do you know the brand of your long tube? xx

[SallyAnnB]

Ellie Yes, I'll definitely ask although my next tube change isn't due until December. My tube is ENTRAL brand. Thanks.

[Ellie]

My tube is ENTRAL brand.

Enteral is the type of tube, it just means a tube for feeding directly into the digestive system. Not to worry, the brands names are sometimes in tiny print! AMT, Mic, Cook and Corflo are the most common brands.

[shelly21]

I was diagnoed4 months ago and I had my peg fitted 3 weeks ago. I do not use it apart from daily water flush which keeps it clean. It is a great peace of mind though that it is there for when it is needed. I am making the transition to liquid meds so i will start using it soon as my swallow is getting slow.
I wanted it done whilst I am still mobile etc so I can get used to it and teach my other half the up keep etc.

[Deborah]

My mum had a tube fitted last October. She used it for water for a few months before needing to use it for food (pretty much overnight she went from eating everything orally to having it through the tube). It's been really great - all her medicines are delivered through the peg too. The site is easy to clean and we use little cotton pads which you can buy cheaply off the internet.

The dangly tube can be a little annoying. Also, the entrance site for my mum is quite high up her tummy and impacts on her ability to wear a bra. She got round the issue by going without (not an option for all!!). She uses a little bit of tape at night time to make sure the tube stays in one place. During the day, it tucks nicely into her clothes.

Learning how to use the tube was pretty straightforward. Mum hasn't been able to do the tube herself but lots of friends and family help her.

I was interested to hear those who have had the tubes changed. This has never been discussed with my mum. Ellie, that little button is fab!!

Bes wishes, Deborah

[Deborah]

These are the tube pads. You can get lots of colours and patterns.

[matthew55]

I use a catheter holder, look up. Changed my PEG life. 👍😚🤗😍xx

[SallyAnnB]

Like Deborah’s mum I use microporous tape to attach the tube to my abdomen overnight to avoid the possibility of its becoming entangled in the bedclothes and pulling out.

[SallyAnnB]

Ellie My tube is ENTRAL written in capitals with the trademark symbol following the name and without the second /e/. It’s made by Maxter of Marseilles. Sorry if it’s not one you’ve previously come across. Probably cheap and cheerful!