1 month post Ivor lewis, retching & saliva build up.

[Laurat03]

Hiya, my partner (age 33) was diagnosed with a T2 N0 adenocarinoma in March this year, he has had 6 weeks of chemo and had the Ivor Lewis surgery on 30th July. He initially made good progress at home and was managing small meals however he then developed terrible nausea and retching, the only substance he brings up when retching is a clear saliva. Due to the ongoing nausea he is finding it difficult to eat and drink anything. He has had repeat CT scans and gastroscopy which have all

been fine. He is on lots of anti emetics and did have a couple of days of feeling ok and being able to drink again but now back to square one with the retching and secretions.

He luckily still has a PEJ tube in so the dietician is arranging a feed for us to have at home. I wondered if this was a common issue with anyone post Ivor Lewis and if anyone can offer any help or advice? Or just to put my mind at ease. Thankyou.

[malcolmk]

Hi, it's not long after surgery so still a lot of settling down for the new plumbing to do. I had the same sort of thing after my surgery before my second rounds of chemo, I found it was anything dairy or creamy consistency that caused my retching so lived for awhile on jacobs crackers (dry) with bolegnaise. Also used the buildup drinks made with water as milk made me wretch right away; just a clear thick sputum like you say but very unpleasant. I would try dry foods and water or juice as it seemed to help me.

[Laurat03 in reply to malcolmk]

Thankyou for your reply. He also seems to have the same problem with the milk based things. How long did this last for? Did you find it settled over time after having dry foods? We are going to try some dry crackers. It's a massive trial and error thing isn't it. Thankyou for your advice.

[jay2908]

It hasn't been long since the op. I was 32 when I had mine. The saliva is the bodies method for lining the throat prior to throwing up. It is very early days, but maybe you can try something for anticipatory nausea, I take 25mg of amitryptaline every evening. This medication will help with the nausea, increase appetite and help with a good nights sleep.

Use the feeding tube as much as possible to allow healing from the surgery and slowly introduce liquids and foods orally.

There are portable feeding tube machine which fit in a back pack, which gives that little bit of freedom to move about and go out.

Hope that helps,

Jay

[Laurat03 in reply to jay2908]

Thankyou for your reply! Yes, very early days still which is what our surgeon & nurse had also said but very unsettling for my partner. I'm glad there's obviously nothing major wrong post op from the CTs & gastroscopy, just wish something would work to settle it.

He's on mirtazepine at night to increase appetite & anti emetic as well as metaclopromide, cyclizine & ondansetron. Hopefully we'll find a routine & mix that works soon.

Thankyou for your advise, much appreciated. Hope you are doing well yourself.

[jay2908 in reply to Laurat03]

I am doing well thanks. I was 11 stone pre op and went down to 7 with various issues, but thankfully back to 10.5 stone.

A few things that helped me early after post op. Note that your partner must eat small amounts of low GI soft food. Do ensure that there is no constipation or diarrhoea. The following may help with building up confidence to eat, but please do not try and get all the calories from eating orally, use the Peg for that. I had an NJ tube 3 times when I needed calorific support. Btw the feed I used was abbotts perrative, which is higher in protein and less likely to cause dumping.

1. Thinly sliced apples, eat one piece every 10 mins or so.

2. One plain biscuit every hour or so.

3. Miso soup to help settle the stomach. Ideally in the morning before eating.

4. Suck on boiled sweets

Hope so of that helps.

Jay

[Laurat03 in reply to jay2908]

We started with a few crackers broken up and having a bit every 10mins. Seems to be the way to go. Will try some of your suggestions too. Thanks

[Spikey]

The nausea and retching could be an after-effect of the chemo. Lots of people suffer from lactose intolerance after chemo. If so, it will gradually pass. I went diary free for a year after my surgery and took strong probiotics - it seemed to help, however I was never as bad as your partner sounds to be. It's early days yet.

[AlanWare]

Hi.

I had exactly the same. I am 21 months post op and still live with constant nausea. For a long time now I have been getting bile reflux, usually when I sleep which I aspire. This is most frightening. It can take up to 4 hours to clear my lungs of the bile. The clear mucus in the vomit did clear up after about 12 months. I have found that I have to drink about 4 cups of coffee first thing of a morning, to dilute the bile acid, so that I can throw it up. This relieves the nausea for a short time. I read on a Mayo clinic article that bile in the stomach causes nausea. So anything to reduce bile reflux has to be the answer. I hope you'r partner finds relief soon.

Kindest regards

Alan

[jay2908 in reply to AlanWare]

Hi Alan, someone recommended sudafed to assist with the mucus. The mucus can drop down overnight, taking sudafed can help.

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Keep a food diary to establish whether it is for everything that he has problems.

Make sure that he really is eating little and often and not overloading his new system.

Try giving up dairy products for a while to see whether that makes a difference (eg rice milk ?)

Make sure that if he is taking domperidone for anti sickness he takes it at least 30 minutes before eating.

There may be a problem with whether food is clearing from the bottom of the stomach with the pyloric sphincter needing a stretch, but that would probably have been mentioned when you had the gastroscopy etc.

Yes, it is not uncommon, but it may take persistence to work out the exact cause.

[Laurat03]

Thankyou for all the replies, all advice is much appreciated.

Hoping to get the feed going Monday. He's not managed anything substantial this weekend unfortunately. He's managing to drink plenty of water but as far as nutrition goes he has something amongst the ongoing nausea when he can and then it seems to go straight through him.

Will see what the specialist nurse and consultant says on Monday.