Nine weeks post Ivor Lewis, anastamotic leak, stent, still no food, reflux challenge!!

Apologies for the long title, but I thought it would help attract appropriate advice! Mum spent exactly a month in hospital after IL which was a bit of a rollercoaster ride as I know you have all been through. She was discharged nil by mouth with jej feed as she has a leak at the anastamoses and has a stent. She has had four scopes since op to remove stent and check the "hole" - and the stent has been replaced each time. She has been allowed to sip water since third. She had been doing great, out for short walks, a bit of pottering in the garden - very lucky with the weather. But now is really struggling with reflux/wind/belching. I have been scrolling through previous posts, so I know reflux is the most common challenge post op. However I couldn't obviously find anyone who was not eating and had the problem. Medication is ranitidine and lansoprazole. Thanks in advance of any advice.

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  • Wind and belching are something I have learnt to live with. It can be embarrassing but it gets better over time. I am 3.5 years post op and still spend time belching after most meals and with nasty wind after some.

    Haward

  • So sorry your mum has had such a rough time .

    I'm by no means an expert on this but when I was jej feed there was discussion about which feed I should have ,high fibre ,loww fibre etc . So I think you need to talk to someone - has your mum a dietician ?

    Also ,just a thought ,maybe slow down the speed of the feed ?

    I do still have lots of wind ( 3 years later and no jej) but it would seem to me that artificial feeding with liquid must be a bit unnatural for ones system .

    Oh ,and the op cuts bits of the vagus nerve which ,if I understand ,affects how your digestive system responds and moves .Mine is still a little odd ,but much better now than it was .

    Hope your mum improves .Do insist on help/advice from your "team" .

  • Hi i had Ivor Lewis in March did have jej in when i came out of hospital but wasn't being fed through it. I had a lots of these probs think it is the jej. Has she tried Gaviscon. Lots of us take this as well as Lansoprazole. Also be careful with bending forewords as this can cause reflux. Hopefully she will be able to start purée foods soon.

  • It sounds as if the leak has healed over if she is now allowed to sip water, but that perhaps her system is not yet ready for food by mouth?

    The stent may well create a funnel for the reflux to come up, and it might be worth checking to see that the dosage of the medication is right, but it is always possible to add Gaviscon to help.

    I think that the wind and belching might well improve with restoration of normal eating by mouth, but it is also true to say that some people do suffer from this, especially early in the morning for some.

  • Thanks Alan. Scope this week showed there's still a tiny hole but she is allowed sipping water. Mum has actually ended back in the hospital yesterday. During scope surgeon wondered if outlet to intestine is narrowed so planned barium swallow should throw light on that. She's been taking gaviscon. Thanks to all for advice.

  • They do eventually heal over, but they sometimes take a really long time, and it is important not to rush it.

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