My husband had this op in Glasgow Royal on 21 May 2019 and finally home 28 June
He has hit a brick wall with exhaustion and hardly eating anything
He is on 3 or 4 Fortisip drinks but now feeling nauseous and think maybe a lactose issue?
But worried to take away these calories too as he is absolutely skeletal
Anybody have ANY help?
Hi Fizzy
I’m assuming your husband has had an Oesophagectomy ? The surgery should’ve been explained to you?
Also assuming your husband has a feed tube in which will help with weight over the coming months. We are all very thin after this surgery and it takes a long time to start putting weight on - I’m nearly 4yrs on and only weigh 44kg (under 7stone) - i can maintain that but can’t seem to put any weight. These drinks are very hard to tolerate, especially after surgery. Mashed potato with lots of butter and ice cream are great for just out of hospital food ! This is massive surgery and recovery takes a long time - you should have a specialist nurse that you can contact for help.
Thank you Molly
Husband was on feed tube for three weeks before surgery and in recovery Was in ICU for 19 days
Had various problems which meant he was in hospital for six weeks and feed tube was then not recommended for the medication he now has to take.
He has only been home 11 days so early days still experimenting
For several months prior to surgery was making lots of dishes eg rice pudding adding condensed milk and serving with evaporated milk, using neutral Fortisip he didn’t like into a rich cheese sauce for haddock or cauliflower etc
He just can’t take these things right now but as I say it’s early days
Have had a phone consult with dietician and have a District Nurse who is helping sort us out so I think we are lucky with the support we are now having
Thank you for your reply and best wishes for your continued recovery
Hi Fizzy
So glad you’ve got support - I had my feed tube removed early due to complication and it was so very hard at that point so I sympathise with your husband.
I couldn’t and still can’t tolerate heavy sauces etc - at that point I lived on M&S kids meals - the portions are perfect size and they have vitamins and mashed veg in them - I lived on them for about 6 months at the start - scrambled egg is very good to and I remember the dieticians saying sausage was great and very rarely reacted, they were right.
Try not analyse everything too much at the start as it’s a very rocky road food wise and takes ages to settle down - if something causes dumping then leave it and try again and again - I’ve fought and fought with garlic bread and salad - finally I’m getting there but it’s took a long time!
All the very best
The op is called Ivor Lewis, depending on where the cancer is depends on where they make the incisions, some have keyhole, but the surgeon decides what is going to be best.
Everyone who has had this op, I believe without exception finds they are exhausted and tired, lacking any energy or the will to do things, it will improve with time, I still need a nap in the afternoon or evening just over 1 year on.
With regard to eating I had to eat very small meals 6 or 7 times a day when I got home, I'm now back to 3 meals a day but smaller quantities, I have my own 1/2 size dinner plate so again time will improve things. ( a smaller plate helps as I'm not overwhelmed with looking a a large plate of food).
I was told when I had my op that this is the biggest op they perform at the hospital, so you must not expect to come out and return to normal life.
The food Fizzy says is just what I had, I found a bit of a problem with milk and cream but again this has changed and I now have no problems with it.
Things will improve with time.
good luck.
Jeff
Hello Fizzy,
I am glad to hear your husband is back home!
Hi Fizzy,
let's try this again...my cats ran over my keyboard. I am so happy to hear your husband is back home. I had surgery also. Mine was the minimally invasive Ivor Lewis, 2 years ago.You mentioned an incision on the neck. One of the surgeons I spoke to called it the McKeown. Finding the right things to eat shouldn't be so difficult, I thought. Small portions,chewing them really good...2 years later and I am still learning. Mashed potatoes,chunky soups and eggs. Those are the "save" items to eat for me. I noticed that if I eat a little fruit with my meals, I can tolerate it better. Plus it helps with me constantly craving sugar. I don't like sweets, but I carry glucose tabs with me now incase I need a boost. On weekends I try out items I once enjoyed. I rarely work on weekends and it gives me time to experiment. If it doesn't agree with me and dumping happens, because I had to eat the whole bag of Gummy bears or eat spicy sushi ( I know better ), I will make to the loo in time. I try over and over. I am proud to say that I can eat fresh salads with dressing and drink tea again. It is work in progress but I am sure you two will do great figuring it out!!
Thank you so much for taking the time to reply and give knowledge when a lot of professionals unfortunately just do not know
We had a District Nurse last week who is calling twice a week as my husband still has five dressings
She has been GOLD so far organising a special cushion/ a blow up mattress topper/ discussing with GP/ referral to Home Physio and Occupational Therapy etc as we had nothing
Been reading up all literature I can find and am truly grateful for help on this site
Thank you
Hello,
I found any kind of nut butter (peanut, walnut, almond, etc) on dry toast/crackers was tolerated right after surgery. Lots of calories and protein in nuts. One favorite was oatmeal and peanut butter.
Best wishes for a continued recovery.
Hi, I had surgery where they cut down the left side of my neck and across my chest. They also cut up from my naval a few inches. Also on my right side bottom of my back they went in. My surgery was called '3 phase oesophagectomy with pyloroplasty'.
Best wishes
Ann - Australia
Wow that’s a lot of surgery even by my husbands experience!
How long ago was this and how are you coping now?
Well done you and thank you for responding
As I am sure everyone will tell you, it is very early days!! He will be exhausted for ages, it’s a major balancing act between doing a little, then resting, and if he’s anything like my husband that will be very difficult to get used to, but hang in there and he’ll get there, and so will you. My husband had his op (Ivor Lewis) in January 2019. At first he was ok, then lactose intolerant for a while, now back on normal milk. It is the most difficult thing he has ever had to deal with (&me)! He now eats about 4 to 6 small meals per day, also a vegan protein shake and at least 1pt milk. He eats the same things every day:- cereal for breakfast, crackers and cheese, cheese on toast with baked beans, a cereal bar, 2 rounds of sandwich, a medium main meal and an individual trifle! If you are considering lactose-free milk etc have a chat with your dietician, there are lots of things that are low in lactose I.e. cream, cheddar cheese, butter, Flora spread, oil, etc. So it is relatively easy to adapt his diet. Also do lactose-free milk for 85p per litre. Hang in there both of you, good luck, and remember he is one of the lucky ones, many can’t have the surgery..... xx
Thank you for your helpful knowledge.
We had a second opinion before my husband had his surgery as the first surgeon (who then went on to perform his operation) was very negative we felt. The second surgeon basically said what you say. He said unfortunately more than 80% of the patients who came before him were not able to have the operation and that my husband was one of the lucky ones who could.
This is an excellent site
Thank you again
Oops! Typo! I meant Aldi do lactose-free milk for 85p
Fizzy35
Good morning it’s called the Ivor Lewis from its welsh founder in the 1940s. It’s also called oesophagectomy and the bit on the back is a thoracotomy.
I had mine a year ago.
It’s serious surgery and he’ll need care to get him right again but it will happen. I was very overweight, lost 7 stone during my treatment but am now putting it back on slowly. Post op care, with your medical team, is incredibly important and they will help with guidance on foods, vitamins and supplements. It’ll take time and his taste will come back. I used to get a lot of Cullen skink (haddock, cream, potato and more cream) as well as scrambled egg, porridge and cream, rice pudding and cream, thick yoghurt and cream and cream and cream. You can see a theme here.
Good luck to you both.
Best wishes
Tanktank
I had the Ivor Lewis full invasive surgery and went down with sepsis on day six post op, only just made it it but managed to walk out of the hospital after a month, I had the feed tube in for four months and didn't think I would ever eat again , but I gradually got stronger and started eating after the tube was taken out and much to everyone's disbelief was back plumbing after eight months at 64 and still working seven years later and doing all the things I ever did ( except smoking)
God bless all the staff at the Royal Marsden at Sutton and Chelsea
Absolutely inspiring!!
Thank you for that and hope you continue to go from strength to strength
Best wishes
