Oesophageal Patients Association
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Weight loss after oesophagectomy

Hi all,

Hoping to find some practical help having googled and searched online, and seeing some previous posts within this community. Looking for advice, tips, to help my husband's recovery and increase his ability to put on weight following surgery and subsequent chyle leak last April. He has also been diagnosed with a bacterial gut infection and is on a course of antibiotics. He is worryingly thin and yesterday developed bursitis on his elbow. Any suggestions welcome!

Thanks in advance x

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Hi

It may be 12-18 months before he puts weight on. The the body seems to use the energy to heal itself and once it has done that then weight might go back on. It is a good idea to eat lots of protein, carbs and so on, even cream, butter, cheese and the like to put weight on. The OPA publishes a recipe book; do you have that?

Haward

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Thanks Hayward,

I have downloaded it. Don't have too much problem eating in general, enjoying decent sized normal meals, though definite reaction to too much sugar, complan and ensure type drinks. Cheese, butter etc are OK. Will try some of the recipes.

Thanks for your advice, and encouragement, it's much appreciated.

A

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Sorry, spell check changed your name 😯

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You won't be the last to misspell my name! Good luck and stay in touch. We're all here to help. Have You thought of coming to an OPA meeting? Haward

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The link to the Scottish meetings page needs updated, however have added my e-mail to get info on local Maggie's support.

Amazed at the number of replies we have had, what a lovely lot you all are !

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Hello Haward I read your response and I am interested in the receipe book you mention. I had the Ivor Lewis procedure last June and am finding it difficult to deal with food and therefore put weight on. Do you have the name of the recipe book you mention

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Hi Johrene. If you call the OPA we can send you a copy or you can download it from our website opa.org.uk. The phone number is 0121 704 9860. Do keep in touch and good luck. H

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Website is opa.org.uk. Autocorrect is a pain sometimes.

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many thanks for the info. Much appreciated.

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Hi I am 8 years post op and it’s only really in the past two years I have put on and maintained a weight gain. I eat lots of cheese, cream, butter etc. I was told by my doc to eat whatever I wanted as long as it had calories in it. Grazing throughout the Day ment I could eat around 3000 calories a day. I avoid fried food and stodgy food as it seems to fill me up for ages and I get reflux but we are all different

Lizzy

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Thanks Lizzy, we were told similar, eat a whole packet of biscuits- anything with calories, but sugar seems to be a problem, as is full cream milk.

Great to hear you are gaining/maintaining now.

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The only way I can maintain my weight of 12 stone (I am 6ft and was around 14-7 before the op) is to eat as much (bad) food as I can. Cream with everything, trifles, chocolate (large bar daily) heaps of butter in my potatoes, etc etc I know most post op don't take to chocolate well but normally I'm fine with it. If I get ill I loose weight going down to about 11 or less then I have to eat anything and everything to get the weight back. My wife currently thinks I look like a skeleton as I have gastrointestinal infection that has lasted some weeks but I will bounce back as I always do. I am now eight years post op and enjoying life :-) ray

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Thanks Ray, what a brilliant outlook you have, to get up to 11/12 stone is the aim, seems a long way off at mo, we appreciate your suggestions. D on 3rd course of antibiotics for gut infection, hope you get relief soon. How long since your op ?.

We wives worry, as you well know ! x

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Its now 8 years !!!!!! I can assure you that we that are going through it or have done so realise just how much our partners suffer as well - something most people forget about, I know early on I was getting really quite irritated as everyone wanted to know how I was but they NEVER asked how Jen was and I think she suffered as much as I did if not more - Time is a great healer and I am a firm believer that a good mental attitude helps the outcome. I was told I would not return to work for a year but was determined I would be back in 4 months- which although it was only a day a week to start I achieved- My surgeon Prog Barr at Gloucester was and still is amazed at my recovery there is ALWAYS light at the end of the tunnel- it is just that sometimes we are so far away from the entrance that we cannot see it :) hope all goes well for you both Ray

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☺Thank you ☺

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I was 12stone

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I was nearly 13 stone 2 years ago before opp now 8 stone 12. Did try to put on weight, have to take Creon now to help absorb fat. Now happy with weight after I realised there are other people my new size who are quite content. My Consultant never appeared concerned about weight loss, Now I have given away alot of my larger clothes and wear some of my daughters clothes she has grown out of.

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Hi Cath,

Thanks for getting in touch, have not heard of Creon, will look into that at next dietician appointment. Consultant doesn't seem bothered about weight loss either.

Glad you are growing to love the new you, x

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Hi ANichol, I hope your husband is otherwise well. I can completely understand where you are, I watched my husband lose 1/2 stone every week nearly at times and he started at 15 stone and finished at 6. It is so scary but I wish I had have seen this group to ask for help like you are. Hopefully you can find comfort that there are others out there willing to help. There were several things we did. He too, had a leak and the silly oesophagus would not heal, so the 2 weeks tube fed ended up being 8. Then we discovered he could eat so little. One of the biggest things was taking tablets. He needed so much water for each one and at times was on 26 in the morning and 25 at night with some in the middle. He had to learn to not use so much water, but also stagger food around them - don't try to take them together as he was full from the water alone. Next we had to learn to fortify the food he could eat. So (in case you don't know) that is adding to everything to make it contain more fat and nutrients. Swap his milk for Jersey cream or at least full fat. Use this in everything - so cereal, porridge is good, but also make mash potato with this and butter (not margarine). Soups, add a splash of the milk. For a change make duchess potatoes - these are easy - mash potato then add Jersey milk and butter - but add an egg. Mix and then place a good sized blob on a baking sheet and cook in the oven until golden brown. Swap coffee for milk only no water, heat it up (microwave is easiest) and then add the coffee, or have milkshake. My husband started not liking it the coffee, so I gradually increased the milk to water ratio over time, eventually, he could only drink it with full milk. If you are very concerned about his weight, ask the oncologist or GP if he can be referred to a Dietician. They will then be able to prescribe Fresubin (Juice and Milk Shake drinks full of nutrients etc.) there is also a Fresubin Shot, which is a 5 ml dose and much easier to take. The other one is Maxijul - this is a tin of powder that fortifies the food - it can be added to everything and anything. It should be tasteless and texture less, but my lovely husband knew everything I put it in and hated it - refusing to eat it. They recommend also eating chocolate bars - Mars etc. the high calorie ones, cream, biscuits, cream cakes, fizzy drinks etc. everything we avoid when on a diet. The problem with these is the dumping syndrome - my husband would be ill for 2 - 3 hours after eating them, literally rolling in agony. So be careful - oh, another is crisps, and my husband found tinned Shandy was much more tolerable than the other fizzy drinks. Hope that helps a little and your husband recovers soon. Carrie

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Carrie,

Your words ring true to us ! So many similarities, such reassuring words. Maxijul- I was lacing everything with it, D knew ! Too much sugar and full fat milk seem to worsen the dumping you describe so accurately. Funny you mention Duchess potato, we were talking of that the other day, used to be a favourite, not had for ages will definitely add to the diet. D finding evening best for snacks; crisps, nuts and a small glass of port are current favourites!

Thank you so much for taking the time to write such a full reply, love to you and yours x

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You are welcome, try the milk gradually without the sugary items. If he can manage crisps, tell him to eat more. Boiled sweets are another - forgot those earlier, he could only eat one or two a day, but that was a couple more calories. We had to unlearn everything as he had a heart attack the year before, so was actively trying to lose weight and then had to do everything to put it back on. Fight one battle at a time - and whichever is the most important first. Good luck with everything. xx

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I had my surgery two years ago and had a major abdominal chyle leak after the surgery that necessitated a 7 week stay in hospital and further interventions to literally glue me back together. This caused me a lot of muscle, protein and weight loss and impaired my immune system so that I developed a blood infection and pneumonia. Not so good. It's taken a long time to put a bit of weight back on but I dont just want weight I want muscle bone density and a good immune system. So I eat protein with each meal, as much fruit and veg as I can process as well as Carbohydrate and fat etc. Like many patients my taste buds have changed and there's a lot of things I either can't digest or end up with dumping syndrome. I don't really feel hungry either So I eat small meals frequently using all the foods I can manage. I have found eating snacks and small mealsfrequently and regularly to be more beneficial than loading up on high fat high energy foods. I still can't process dairy red meat pastry etc and get dumping syndrome with sugar. Amazingly I no longer like chocolate and avoid it. But white fish chicken etc can be managed in bigger quantities now! Also I do weight bearing exercise to rebuild muscle. I teach pilates once a week and go to ballet. It seems the combination of easily digested food small but frequent meals and exercise are the way forward. We're all s bit different. Anyway good luck but not sure your husband would enjoy the ballet much!

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Hi,

Too many similarities !! D was in for 7 weeks with chyle leak too. It was a radiographer who finally glued the leak, after an unsuccessful overflow shunt/stent had been inserted and 16litres of chyle had been drained. Your advice has been reassuring and I agree that moving /exercise is necessary to rebuild muscle, D has started a MacMillan support gym class and reflexology is also ongoing.

You are an inspiration and we thank you for taking the time to write x

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He's doing all the right things! I judge success by increasing energy levels and my resistance to viruses etc rather than a number on the scales. I think it's been harder getting over the chyle leak than the surgery. But really I feel so lucky to still be here. Good luck to you both!

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Some time ago we did a poll about the amount of weight that people lost after their surgery. In case you cannot find it (and I sympathise with trying to find things online) here is a link:

healthunlocked.com/oesophag...

I think that some people might think I am a heretic, but not gaining weight does not mean lack of progress, despite what we might look like (eg gaunt). You may well develop into a new normal weight which is lighter than before the trouble started. It will sort itself out provided the other things like bacterial gut infections can be resolved and he eats sensibly, avoiding things that cause trouble. There are issues with body image, wardrobes and whether other people think that we are still just as ill, but those are different issues.

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I was relatively lucky in that while I went down to 7 Stone while trying to get diagnosed (it took around 6 months from first symptoms get someone to do an endosocope) I am a type 1 diabetic so always reading carbs and also have a qualification in food science that I have never used professionally but helped in my personal life. I am back at around the same weight as I was since I was a 17 year old (am 43 at this stage) of around 8 stone (I am petite at only around 5ft tall (even dealing with the adaptations I have to make for my now brittle type 1 diabetes) - I did gain weight for my pregnancies though thankfully. I watch what I eat, for me low volume higher calorie works but certain foods are out of reach (broccoli and low fat milk are two examples) but that is just me. I do exercise a small bit (fast walks, sit ups, and lifting weights) . I love being a mum.

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How I envy you early birds being able to gorge on anything that takes your fancy!

I was a rugby playing 6ft 3 ins and went from 13 stones to 9.

BUT now, 26 years after the op I put on weight at the drop of a hat. So much so that I get away with only eating twice a day. That does wonders for the incidence of dumping.

A good target to aim at is to be the same weight as when you left school, assuming you weren't a rolly-polly teenager. Weight per se is not an issue, the important factor is nutritional balance. Remember that the UK population has never been healthier than in 1945 after five years of a very sparse but balanced wartime rationing diet.

Do take care with refined carbohydrates such as cakes, biscuits, mashed potato etc, anything with a high glycaemic index, as dumping/hypo can be fatal.

The grain with a low GI is Basmati Rice - pilafs packed with vegetables and white meat are easy to cook, keep well, can have highly varied spicing so are tasty, tempting yet easy to eat and, perhaps most importantly, can be enjoyed by all the family so avoiding isolating and stigmatizing the patient.

Portion control is also important from another perspective. If one habitually eats to the point of feeling full and uncomfortable then stretching of the pseudo-oesophagus will result. It must be borne in mind that that distension is now occurring high up in the crowded chest. I suffer from clash interaction with both the heart and the lungs with potentially unfortunate consequences.

Coughing at the end of a meal can signify that the new intruder 'balloon' is rubbing on one or both lungs.

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Good tip about the coughing, something to be aware of.

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