My dad had an osephagealectomy in October 2023. Agyrr a diagnosis of osephageal cancer in May 2023.
He's still recovering. Consultant and dietitian tell him to eat fats to put weight on, problem is with eating all the butter cheeses etc he is having grippy tummy pains and on toilet all the time.
Does anyone have any advice for what he can do differently to eat without constant loo visits.
Dr's did mention yestday about inserting a tube to feed but he isn't that keen!
Any help or advice would be appreciated
Thanks
Ditzy xxx
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DITZY-21
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Hi DITZY-21. Apart from the eating and tummy pains, I hope your Dad is feeling he is making some progress. I also had an Oesophagotomy in October (31st). I have had tummy pains and need to use the toilet quite urgently, but probably only once a week and I honestly don’t know what brings it on, so from this perspective, I cannot make suitable suggestions to your Dad. My operation consisted of bringing my stomach up to replace my Oesophagus and I didn’t have much of my stomach removed. Maybe your Dad did have more of his stomach removed and is why he is struggling more with eating.
However, I did have a feeding tube once I came home from hospital, and used it for about a month. Although it was something that I didn’t particularly want, I think it did do me some good. I basically had it on a night when I went to bed, and it gave me about 1500 calories through the night. It might be something that your Dad might want to consider if it helps with his current eating problems.
Have you looked at the Oesophageal forum on the MacMillan site? I think you will find that there are a lot of people who may be able to give you more advice than I can.
Thank you so much for your reply and I hope you are doing well. Its such a big operation my dad had his on 23rd Oct and he had the same op as you bringing tummy up into his chest. His eating and ability to eat is OK. It's what he's being told to eat that is the problem.
They have suggestion a feeding tube which he isn't keen on at all, to be honest he's needs it.
Thank you so much for replying and I wish you speedy recovery xxx
Some of us can’t tolerate full fat it is a bit of trial and error. I couldn’t have yogurt, ice cream, full fat milk and those fortified drinks.Remember not to drink with food apart from sips of water as it could be dumping syndrome look this up if you are not aware of it.
Snacking like cheddar cheese crackers, crisps, biscuits in between meals. Always eat small meals child size, too big a meal can also cause problems. Sweet things can cause stomach cramps too .
I have creon too to help with absorbing nutrients.
8 years post op I have put back on a stone of 3 stone loss. My body can tolerate more but still get dumping syndrome. I have a good new normal life.
Good luck with his recovery it is a big operation and early days.
Sadly the advice you refer too is given by dieticians all to often does not suit everyone who has undergone this very serious operation. I know only too well as I had exactly the same advice, with the same outcome
I understand that the answer to the issue is Creon, although I have not, as yet, been offered this. I would discuss the issue with your Dad’s medical team to see if he can be prescribed. Best wishes to him.
Hello there. This is quite a lengthy road of exploration and it takes quite a while to find out what can be tolerated and what can’t. For me I am fine with fat (except Yoghurt - all types) but terrible with carbohydrate and for others it is different. I find crisp type snacks an important calorie source as they give me no issues at all. And of course there are the high sugar drinks but clearly not with food and they don’t give you any other benefit. My only helpful suggestion is to write it all down, the food, the quantity, the time and the result as it speeds up the ability to identify what works and it also makes it a bit more fun as you feel you are managing the situation rather than letting it happen. Good luck.
Hi, sorry to hear that your Dad is struggling, it's very hard to watch isn't it. I think everyone has similar experiences but to varying degrees and as SurreyGuy said it helps if you feel you are managing it rather than the other way round. In my case I had to be tube fed because I couldn't get anything down after the op and spent 5 weeks in hospital. I came home with the feeding tube and spent the next 7 months gradually reducing reliance on that and increasing actual food. It's not as daunting as you think and is done through the night. It's just a bit of a nuisance when you want to blow your nose 🙄. I'm now on about 2000 calories a day, little and often and I don't have the dumping very frequently. I do take Fresubin shots as I can't seem to tolerate the other supplements. They give me 150 calories per 30ml shot and I mix in with milk for breakfast or yoghurt. I don't have many sweet things like high fat custard or rice pudding as I can't tolerate that either. I do have crackers and cheese or crisps to make up some calories but I try to eat as healthily as possible as don't think too much about weight. I do weigh everything and log calories and meals and how they suit me to feel like I'm in control. It's relatively early days for your Dad and he'll be on the journey to finding his on way for a while but he will get there. Good luck
My Ivor Lewis was in July 2022, I was 82 kg pre-op , now 65-66 kg and struggling to maintain my weight. It seems to me that it’s all about diet and it is very individual. As an example, Smithyrat says he can’t eat rice puddings, that’s one of the things I get on best with! One common theme however is definitely little and often. I can’t cope with the supplements so I’ve stopped trying. With “normal “ food if I eat just one mouthful too much I’ll either get dumping syndrome or I’ll go to sleep. I can feel when I’ve had enough, a heavy feeling starts and I have to stop eating even if I’m still hungry. Also I’ve learned which foods I get on best with - pasta and minced beef is fine, as is home made bread, but supermarket bread is a definite no-no. If I get dumping syndrome, a dextrose tablet sorts it, if really bad a half hour sleep is best. I’ve been on Creon for about 3 months but I can’t see any difference either on symptoms or weight. The dietitians do their best, but I think they can only give generalised advice, they haven’t personally experienced it, you have to learn what your body wants. Good luck!
Thanks for your reply. We were at the Royal last week and the gave my dad Creon, the general advice is the same but he's been on then now a week tday. It's just hard to watch him. I know the alternative to not having the operation would be unthinkable.Will get him some dextrose over the weekend.
We met a lovely man while dad was hospital in October called Barry who has the operation years ago and it was so good to talk to him.
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