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Naso jejunostomy tube ( dont read if you are currently eating ! )

(8 Posts)
flapjackfairy Mon 12-Mar-18 20:49:36

My son has a gastrostomy peg and is nil by mouth with a very severe reflux problem. He has had several aspiration pneumonias and all medications have made little difference. He also has issues when asleep as he forgets to breathe and suffers from severe sleep apnea .
He really needs to be on a Bipap machine at night but cant use one due to his severe vomiting so he has been fitted with a naso jejunostomy to feed into the bowel to try and resolve the problem.
He has always struggled with his secretions but since the tube has been fitted he is drowning in them despite large doses of medication and a drainage bag fitted to his gastrostomy which is gathering all sorts of crap .( apologies to anyone eating as it is not a pleasant subject i know )
Has anyone had any experience of this as he is now keeping feeds down but vomiting up all this other gunk that is not making it into the drainage bag and we are still not able to risk the bipap machine.
I saw gastro team today who are not concerned by it and think it will settle once they have put a jtube in surgically to replace the gastrstomy tube. Not sure how soon that is going go happen and in the meantime he continues to heave a lot either straining to be sick but not doing so or choking on stomach contents ! T
I realise this is a niche subject but just thought someone might have experience of this and could share their experience or offer some words of wisdom.

springiscomingagain Mon 12-Mar-18 22:38:11

Sort of my area...well a bit!

Do you mean since the NJ tube was fitted, secretions management is much worse? If so, that's quite common as the tube is an irritation and a presence of something foreign that needs to be swallowed which produces saliva. Secretions will always be a problem anyway for an individual who isn't swallowing (we swallow pints of the stuff daily - yum!). Is hyoscine one of the meds?

Once the PEG is swapped to a PEJ you may well see a big difference in the reflux and general accumulation of stuff as it's much better for general absorption when there are problems. Do you have a timeframe for the procedure?

BellaCat123 Mon 12-Mar-18 23:49:15

We went through something similar with my LG. On this occasion NJ feeding just didn’t agree with her, huge increase in secretions, watery bowel motions every hour, multiple vomits, oral aversion and constant retching.

Very similarly she moved over to NJ feeding because of recurrent respiratory issues due to aspiration. The respiratory issues did reduce once we had moved over to NJ feeding but it definitely felt like the ‘risk’ didn’t as we saw such a spike in vomiting and pooling of secretions.

We tried so many different options over the years. We had hyoscine patches, glycoprronium, atrovent inhaler, trihexyphendyl and Botox into the salivary gland to try and manage the excess secretions. We tried omeprazole, ranitidine, domperidone and gaviscon for reflux. All medications either had little effect or remained effective for a very short time.

Ultimately the things that proved life changing were nissens fundoplication and moving over to a blended diet through the gastrostomy button. Would fundoplication be an option here do you know?

Blended diet is not supported in every area and is controversial but there is an amazing fb group full of help, advice and stories of life changing progress.

This is what worked for us but, of course, won’t be what works for everyone. It may be that jejunostomy feeding resolves everything with a surgically placed jej.

I really hope for you and your son that you get a surgery date soon and start seeing some light at the end of the tunnel! It is horrid when they struggle so much.

Final question! Have different feeds been tried? I am positive this would have been trialled. But If he is on a whole protein feed then a peptide feed or a single amino acid feed could be easier on his digestive system?

flapjackfairy Tue 13-Mar-18 05:42:51

Thankyou so much Bella and Spring. Really wasnt expecting a response so good to hear from you both.
My child is on the ketogenic diet for intracable epilepsy so no room for manouver at all there. We have tried hyoscine patches ( full patch every 48 hrs ) and glychopyronium ( however you spell it ) , we are on maximum reflux meds so no more help there either. And tried all different options there.
Fundos seem to be out of favour now for some reason and are not recommended ? Jeg feeding is now the preferred option apparently.
His bowels have always been a nightmare anyway and he needs movicol etc but since jtube in he has been going better so i knocked movicol on the head for a day or two but he was then v blocked up and we had a day of straining, crying and lots of pooing so back on it again now.
It is so hard to get any kind of balance with anything and solving one problem always seems to create another as it were.
We spent the day in hosp again yesterday as he pulled the tube out yesterday morning and while we waited for it to be passed his secretions settled down and his drainage bag was empty. As soon as the tube was in within an hr he was frothing at the mouth and struggling , coughing and gagging and bag filling up. So that confirmed our suspicions and we pointed it our to gastro dr but she wasnt overly concerned. . We have emphasised to them that we need it doing asap but it is co ordinating the radiologist, anaesthetist etc so no date yet.
It cant come soon enough and I really hope it settles down . In the meantime it seems like there is not really anything else we can try but
thanks again for the info and advice, it really helps not to feel so alone with it all.

BellaCat123 Tue 13-Mar-18 08:35:25

Hi Flapjack

Which consultant and hospital are you under? (You can PM if you prefer)

Friends LO Just had fundo done at GOSH....

flapjackfairy Tue 13-Mar-18 12:12:09

We are in the midlands . It is v much out of fashion with our local services though not entirely sure why !

BellaCat123 Tue 13-Mar-18 14:32:02

What a shame! That really is the only thing that worked for us. Odd how things come and go.

I really hope that your son gets his op soon and the jej feeding goes well for him.

Sorry I couldn’t be off any more help!

flapjackfairy Tue 13-Mar-18 15:51:01

Thats ok I appreciate your input. If the jejunostomy doesnt work i will be pushing for a fundo next for sure.
Thanks again Bella x

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