4 months post oesophagus surgery and still very nauseous

[Luvver]

This is my first post. My husband had his op in January and initially seemed to recover well, then at 3 months fatigue hit him. Now at 4 months he is beginning to feel a bit less fatigued, BUT now he is feeling more nauseous than before. We thought he was lactose intolerant so he’s on lacto-free milk etc. For weeks he has had cereal for breakfast with no problems, then for the last few days he has eaten it OK,then about 1 hr after he feels terrible, weak, wobbly etc and has to lie down for 1/2 to 1 hour. As the day goes on he is a bit better, but the nausea persists. It is really getting him down (&me). Last night was really bad, he woke at 3 am and was sick, now can’t even keep water down.

He is having his 2nd endoscopy/stretch in 2weeks.

He is trying so very hard to get as many calories as possible down in a day, around 2000. He has lost 1.5 stone since his op but seems to have stabilised over the past few weeks. Any help would be greatly appreciated.

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[ccfc]

Hi, I think you will find everyone on this site will have a different story about their recovery. I am six and a half years post op and was also lactose intolerant at first but over time was fine. As for feeling sick, personally that has never left me. It has improved a lot though. In the early days I felt sick every time I ate but now it just affects me the first time I eat every day. I’m used to it now and just wait for the feeling to pass. Like I said, that’s the way I am but it doesn’t mean your husband will be the same. Good luck and best wishes, James.

[phil in reply to ccfc]

Its early days yet with your husbands recovery and it does take a long time to get used to the new eating and sleeping methods. Sometimes in the early days after the operation you become over concerned with your weight loss and try to eat more than your new stomach can cope with. That causes early or late dumping and that seems to be happening with your Husband. We all lose weight and 12 years ago I was 12.5 st and vey fit, after the operation I lost 2st and I remain 10.5 st and still fit and health apart from the usual problems with eating and sleeping. I do try to eat smaller meals slowly and chew well and if you can achieve this it really does help with dumping and nausea but that's harder said than done and still happens to me. Has the last post says you learn to live with it but it will get better in time.

All the best with your recovery

Phil.

[Luvver in reply to phil]

Thanks Phil, that sounds about right for what he was trying to do, now trying to eat little and often and not worry too much about calories. Hope you continue to keep good health

[slobjohnb]

I feel for him but trying to cram in calories is not the right thing to do, let the stomach take its time and don 't worry about losing weight. I lost 3/12 stones and over a year later I'm just beginning to put weight back on. Actually I'm now trying to maintain the body weight that is right for me, so no more chocolate!

[Luvver in reply to slobjohnb]

Thank you, he is now trying to eat small amounts every 2 hours or so, and I am trying not to worry about calories!

[Janashlin]

I had my operation in December, had lots of issues and spent 2 months in ICU. I have been home for 2 months and your husband sounds to be very much the same as I am with eating and nausea. I was nauseous 24/7 until I started taking cannabis oil which has eliminated the nausea. If I miss a dose of it I am nauseous again. I get dumping syndrome ( as per what you described with your husband) at least once a day. Everyone will tell you to eat small amounts more often which is absolutely true but hard to get used to. I have lost 22 kilos and was worried but it has started to level off now. I agree with the others, try to do small meals for your stomach and not worry so much about the weight. The nausea Eas ruining my life, cannabis oil has given me hope for a better quality of life. I feel sorry for my husband because our eating has changed so much and it is hard for him and the family to watch how much I struggle. We all have changes to get used to but the great need is we are still here. All the best to you both.

[Luvver in reply to Janashlin]

Thank you so much for your words, you certainly have had a tough time, so pleased you are improving. I have read them to my husband and hopefully he’ll try the oil, is it the stuff you can get from Holland and Barrett etc? He is reluctant (scared) to try anything out of the norm, but if it helps with nausea I think he will give it a go. I am so pleased that I found this site, so much positive support from fellow sufferers, thank you for sharing, hope you continue to improve.

[Janashlin in reply to Luvver]

I live in Australia so I am not sure what you can get where you are but cannabis oil has helped me and many others with nausea. My sister had cancer 15 years ago and at that time you could not get cannabis oil and she smoked weed ( Canada) to relieve her nausea And it worked. Neither of us were ever smokers of cigarettes or weed but nausea is terrible.

[Mindcrazedbanjo]

Hi, I'm two and a half years post Ivor Lewis op, my advice is to cut out all sugar, I use Xylitol from Holland & barrett instead its fantastic. When I used sugar I got terrible dumping syndrone afterwards, I would feel sick and just had to sit down and wait for about half an hour for it to pass, I never get that now. I also cut out as much dairy as possible, I replaced milk with "fresh" Oatly, Muesli in the morning with Oatly, Oatly in coffee goes really well, I ditched Tea altogether. Eggs are ok and so is Stork margarine, I would never dream of eating cream or cakes, donuts or anything like that cos I know it would kick off the dumping syndrome. I don't eat Red meat either. Peanut butter cookies are high calorie and are at hand when you need to eat. (cooking all the time is a problem). I eat Salted cashew nuts, eating all the time is a problem but its easy to just sit and chew on the odd nut nd they are high in calories. Its tough and you have to change and adapt, they say thats the key to survival on this planet, being able to adapt and quickly. Fortunately we are creatures of habit and once you get on the right track you will get more used to the change.

[Luvver in reply to Mindcrazedbanjo]

Thanks for your encouraging words, much appreciated, good luck with your continued recovery

[liz_crisp]

Hi it sounds like he could be getting dumping, it’s like feeling shaky, clammy, weak, and sick. If you take some dextrose tablets, jelly babies, or during high sugar drinks as soon as you start to feel odd you often will feel better in about 20 mins. Its due to either food travelling too fast through the gut, being in the wrong place, it’s not always because it was sugary food but it is different for everyone. I get dumping if I eat and move around after I have eaten. Or some times if I eat a high carb meal. You can find information on dumping on the Opa website or ask to see an upper GI specialist dietician. I find grazing all day and eating little and often is the best way especially as early in recovery as your husband is. The gut is relearning what to do with food and is Going from baby to toddler to child etc his digestive system does change and will keep doing so for a while. What is tolerated this week may cause problems next week. And then next month it will be fine again Tastes change too so just keep trying foods. Don’t worry about losing weight it will come back. It does take time. You can add calories to food using cream to make mash put on cereals etc, grate cheese over vegetables. Don’t eat anything low fat, add milk powder to milk and use it to make custards and puddings. Advacados, cream cheese, ice cream, chocolate, biscuits crisps, little pastries cakes etc all good high fat nibbles. Some dressings are high in calories, mayonnaise, good French dressing etc. Just eat what ever you fancy.

[Luvver in reply to liz_crisp]

Thank you for your encouraging words, we will keep referring back to them to try and keep positive. The analogy about baby to toddler etc is good, will keep that in mind too. We have dextrose sweets and pepsi etc on hand, also he’s trying CBD oil as well as anti sick pills and little and often eating which seems to be helping. There is definitely a ‘getting your head round it’ element! At the minute he is lactose intolerant, but is having cheese, cream etc as well as lactose free milk. He seems to be able to tolerate some ready made foods with milk in, and he loves individual trifles! Thanks again and good luck with your continued recovery .

[Ellapup]

Hello luvver, I am 8 months out surgery, I/L and it has been a roller coaster ride. It is not because of complications with surgery because that went well except for a chyle leak in the beginning that put me on a no fat diet. My situation was finding the right foods for me and that was changing frequently. I have found where I am now I start with protein in the morning. eggs and Hamburg or bacon and some fruit. Eating to much causes pain in chest and back plus nausea and vomiting . I eat 2 of every meal meaning 2 breakfast and so on. Plus snacks . We have no hunger or thirst that registers because the vagus nerve has been cut . I was only able to eat 1/2 cup at a time but now that is more, at times a cup. Try to keep protein intake at 100 grams a day. I also want to say that I developed hypoglycemia because of the rearranging of my insides. Dumping process happens and sugar goes low, I get shakes, nauseous, sweat weak dizzy and vision goes , my last episode brought to a glucose level of 50. I carry dextrose now and watch for signs. There is so much, lol. I keep track of my food intake

[Luvver in reply to Ellapup]

Hi,thank you for that, it is such a complex thing to get your head round ( and your insides!). My husband struggles with nausea mainly. I guess there’s an element of ‘getting your head round it all’ and expecting too much too soon. It upsets me to see him feeling sick and not being able to eat, but hearing your experience and from others too really helps us believe there is a light at the end of the tunnel. Good luck with your continued recovery.

[grandylynda]

I agree with all the above. We are all diferent.

I am nearly 21 months post surgery and still eat little and often. Bananas and high calorie cereal bars are good for when you are out. I still get hypos but you learn to cope. Always have dextrose handy.

I had dietry suplements on prescription for a year about. I had then till I was eating beter and found I could cut them gradually with out losing weight. If you are not under a dietician ask to see one. I was told I would lose about a stone and not regain it.

i have leveled out at 1 st less than pre surgery.