my husband had an Ivor Lewis oesophagectomy in 2019. The operation had complications and left my husband in a bad way and 6 months in ICU. He survived against the odds, but 4 years + down the line he suffers with constant nausea and diarrhoea . Nobody , but nobody has a solution to his debilitating condition. He takes various anti sickness meds , practically lives on immodium and does not have a good quality of life. He also C-ptsd , caused by the journey he had in ICU.
He can’t ever plan a day out as 9x out of 10 he’ll have to cancel .
Is anyone else experiencing this thing that the consultant has told us is ‘the gift that keeps on giving’ and a legacy of oesopagectomy?
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Animalmadwoman
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Hi - I am 8yrs on and have zero appetite and constant nausea from Ivor Lewis - I stopped taking all the anti sickness as nothing worked - I’ve learned to live with it but it’s not easy - I feel for your husband - I try be outside as much as poss as this seems to help me cope with it - I don’t attend any social events nor do I dine out in any capacity because you never know how your new system is going to react - I found trying to do these things just caused me anxiety so stopped - my life is a world away from what it was but I’ve adapted - quite a good line from your consultant ‘the gift that keeps on giving’ - very true - all the best X
Hi Molly! Thank you for your reply. Yes, a miserable situation for survivors. He is 74 years of age and does struggle mentally. He also finds going outside and ‘pottering’ in the garden helps . It makes him feel useful if he can cut the grass or potter in his shed! I wish people could see the price that is paid for the aftermath of this life saving op. Not easy for you.
I wish you well , thanks for your reply it does help knowing it is part and parcel of survival.
I’ve read your comments concerning your husbands’ condition and sympathise wholeheartedly.
The disparity between patient’s symptoms we survivors of this terrible disease is quite remarkable.
I assume you have been down the food types he’s eating, as certain foods seem to have different effects on some but not on others. I personally was advised by a dietitian to eat as as much fatty food as possible in order to regain the weight I would no doubt lose over the oncoming years. That advice turned out to be completely wrong in my case, but in others it’s has the desired effect. Is there any particular food type he prefers which my be having the opposite effect?
I don’t know if my advice will be of use but something that simple may have been overlooked. Best of luck.
Thank you for your reply and advice. Yes, I agree careful diet is key. Things like greasy fatty foods, cause him to have terrible acid reflux, so sadly things like fish and chips are off the menu!
We’ve seemed to have hit on a good substitute for cereal for breakfast, pot of Ambrosia creamed rice. Cereal, he feels irritate the bowel and cause diarrhoea .
I think more than anything it’s the constant nausea that gets him down. He always says he dreads going to bed as he knows what he will feel like in the morning. Nobody seems to have a remedy and think it’s a legacy of life saving , radical surgery. 😣
I know all to well how your husband is feeling. Spent 5 weeks in hosp after esophageal cancer removal and gastric pull thru. I had a clamp inserted after a leak. It caused terrible nausea. Finally had it removed and nausea stopped immediately. Hope this is helpful..
That’s so sad for you both, but what you are saying is not uncommon, we’ve all been down similar paths.
I suspect you are correct in terms of the surgery. It’s a really complicated operation which takes many years to start feeling better. Everyone is different, some take many years other feel better quicker, sadly it’s a case of trial and error and eventually you hit on the right combination.
The acid reflux can be resolved by a combination of drugs and changing his sleeping arrangements, ie, laying upright with the help of a V-Pillow which many patients use, including myself. However, I eventually bought a new adjustable bed which is brilliant, albeit more expensive.
Your husbands scenario is pretty much spot on mine.
I had every complication you can imagine, 57 days in ICU, months in hospital.
When I finally came out of hospital I ended up having to go back in because the nausea was so bad I could not cope. Nothing they tried would help. They did urgent brain scans to see if the cancer had spread to my brain etc.
Anyway after weeks / months of terrible nausea I finally got ahold of CBD oil.
I am originally from Canada and it is legal in canada and readily available via the local cannabis stores.
I started taking it three times a day and it was a game changer. I still have trouble eating and I suffer from dumping syndrome after I eat most of the time but the cbd oil gets rid of 75 percent of the nausea.
I live in Australia and I am on medical cbd now but when I started I had to source my own.
If you can access where you live I highly recommend your husband trying it.
It also helps with the anxiety this bloody Ivor Lewis operation leaves a lot of people with after the fight to survive.
I am 4.5 year survivor and I now have good days with bad moments.
My energy levels have never returned to previous levels but much better than they were the first 3 years.
CBD oil with a touch of THC - 20:1 type ration is what I use.
Started with 1 ml 3 times a day and now take twice a day.
Also, I find grazing to be my friend. A few bites often but more than that and I am into dumping and feeling crappy.
Thank you Janashlin for your detailed reply! I think that is well worth trying. We live in the UK and we can buy CNS oil, but it will probably much weaker than what is available to you.
I’m still going to give it a go though. I will talk to the pharmacist too( where I have seen it sold)
It’s encouraging to hear that over time ( years) that there are some improvements in these debilitating symptoms.
Grazing is also good advice . He does actually feel hungry sometimes, which he never did but then makes the mistake of eating too much at once , then has to run to the loo!
The same has me but I am fifteen years with the sickness and my life has changed ,I go out for 2 hrs in the morning i don’t eat breakfast because I feel sick and then I would not go out . Also get a lot of pain where the feeding tube was . The dumping is not so bad now . Good luck to you .
I do agree that we end up adapting our lifestyle to our situation in order to manage things better.
I find that eating fish, chicken and lamb does not get digested easily in my stomach so I tend to avoid these. Also quite recently I was told at a hospital appointment to avoid bread and rice and anything that would act like a sponge in our stomach. I tried a diet avoiding or reducing these items for a period of 3 weeks as well as doing a gluten free diet and found that rice etc did increase my feeling off nausea.
I have now reduced my intake of bread - I used to live on this and I used to eat it 3 times everyday for many years. I felt that it was easy to digest and small enough as a meal. Eaten either as a toast with something or as a sandwich. I no longer do this as I agree with the doctor that it acts as a sponge in my new gullet and made me feel sick.
Re acid reflux, I eat Lansoprazole (×2 aday) and Famotidine (at night). Also peptac liquid if I have other reflux issues at night. I am supposed to drink this after meals but I find it disgusting so if I end with reflux at night then I do glugg it down. It just then affects the rest of your day as you are absolutely shattered due to your broken sleep or due the reflux going into your ears or in your lungs.
The difficulty is that I eat curry a lot. I have had to change my eating habits to accommodate it. I no longer eat curry after 5pm and I also eat earlier in the day because I know I will feel sick the next morning.
I feel I have been given a second chance in life and I am just managing as best as I can.
Like your hubby i had 3 months in itu unconscious and was on deaths door. I had c. Difficult too which I assume left me with the diarrhoea, loose stools and cramps i had for 2 and a half years post op and only in the last 3 months my gut has settled so that I can go out with confidence. The drs/dietician were no help. They put me on Creon which I stopped after a year as it made it worse.. This is what I did
Firstly check my drugs to see if any could have side effects of diarrhoea, ? Ask your pharmacist. I thought it could be IBS so I kept a strict food and bowel chart and looked for patterns with food and diarrhoea. I Followed a fodmap diet (get an app on your phone to tell you what to avoid) so no onion, garlic, spices, beans peas, etc. I take 6 snacks a day not meals to manage portion size. I ate easily digestible food ie mince rather than beef. I take Hyocine or Buscopan for the cramps. Imodium was no use so I stopped it. I take lactose free milk. At 2 years 3 months the diarrhoea became watery (8-12 times day). All the GPs tests were negative. We had to insist that I was given the antibiotics for small bowel bacterial overgrowth. The fluid diarrhoea stopped in 48hour! The cramps have slowly reduced and the sudden soft stools have stopped. I feel queesy every morning and that goes after a cup of tea and a banana in bed. I presume it’s low blood sugar. I avoid too much fat as it upsets my gut too. Best wishes to your hubby and Good luck. X
yes I am 15 years post op like your husband I have a bad quality of life ongoing problems sickness and dumping . But we are here and at least I have seen my grandson grow into an adult . My op went wrong had to have three in the end within 6 months .🔎
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