8 months post op, which is early I know, but dumping and food constantly bubbling up (and overspilling!) despite only tiny meals, seems to be getting worse.
Can any body advise or tell us what their normal days maintainance plan is as we are still struggling. Dave has been trying to fill up by picking biscuits as he struggles with reflux and over fullness after only a tiny amount of food and his weight is still dropping. We wonder if the biscuits are causing dumping and vomiting, but don't know what else he can eat to keep the calories up. Some days he can only manage about 1500 calories which is nowhere near enough.
All ideas would be really helpful ~ many thanks, Lynn x
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lynnbibb
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Have you tried the drinks that you can get from the dietician? Here in Scotland they are fresubin but not sure what it will be where you are. You can get 400 calorie ones and I was drinking 2 per day to supplement my eating.
I have boost VHC it is 589 calories. I usually make a smoothie with it. I use almond milk and whey powder. Trying to gain weight is a problem. It seem you can never eat enough to gain much weight. I was pre-op 200 lbs but can't get past 172 now.
He had the Ivor Lewis, so all the gullet and third of the stomach. Sadly he was in for 5 weeks with sepsis, double pneumonia, and his stomach stopped working altogether so was gastric tubed to drain bile for 5 weeks.
He still suffers from slow motility, and scar tissue build up of the new oesophagus and has had 5 procedure's (stretches) done in 6 months and is booked in for his 6th. the last one they were unable to complete due to his stomach being too full. His last meal had been at 6 o clock on the Sunday evening, and this was at 9 o clock Monday morning.
I think all of these problems are a contributing factor, so even little and often is difficult. We are vegetarian, and all of the sugars in buiscuits are causing dumping syndrome, so his weight is difficult to stabalise.
There is another think you might want to try to avoid - any chocolate, coffee and acidic products as they stimulate bile secretion causing damage to the tissue of what is left of oesophagus.
My husband had an extended total gastrectomy exactly 12 months ago. He too has struggled keeping food down, dumping and low glucose. His weight has plummeted from 14.5st to 10.5st. He had all the eat small and often advice and dietitians that said increase fat and sugar. He was eventually sent back to see his surgeon who did a barrage of tests. The surgeon's first advice was drink thicker drinks, not tea etc. On receipt of the results of the tests, the barium swallow test showed very clearly that hubby has a major problem with flowback. There's no blockage or anything, it's just when he moves the substance in his intestine shoots back upward (causing that vomit sensation) and because there are no valves it just comes right back up.
Surgeon in hubby's case has recommended trying antispasmodic's to try to slow down the peristalsis in the intestine which could be responsible for the sudden flowback.
This obviously may not be the case with your hubby, but I would say it's probably worth asking for some tests to see what is happening down there. For my husband it means he now understands better and doesn't laugh at me when I tell him to stand up when he feels sick and if the feeling persists to take a slow walk round the garden. The surgeon agreed with me - yeah! He said gravity can be helpful.
On the weight front, like you I've worried myself silly. I have tried all sorts and as much as possible high in carbs without being over fat and sugar burdened. My husband has Ensure Compact (300 calls each) which are not as big as the standard Ensure so easier to get down.
I've been doing smoothies, which he has drunk over the course of a day, but again they haven't had much effect on the weight problem.
I have however just found a book on Amazon (Weight Gain Smoothies by Danny Gansneder) which although a very thin book has several tasty looking recipes in it. The very first recipe is call 'The 2000' and contains 93g of protein and over 2000 calories. Hubby actually likes this (I use chocolate flavoured protein powder from H&H at the moment and will try swapping it to strawberry flavour for a chance) and although he can't drink it in one go, I put it in those little milk bottles that you can buy very easily now (Amazon - sorry not trying to advertise, I just find it easier not having to physically search for these things when I have so much more to do) , pop them in the fridge and then hubby drinks them over the day with a little straw.
This may also not be the case with your husband, but I have noticed that if mine is mega relaxed, food on the whole seems to stay put better. It did get to the point where it was almost a battle of wits between the CNS, dietician, me and the children against hubby who saw everyone on his case about food and eating, and yet at the same time he was worrying himself sick about the weight loss. I suggested a food diary so hubby could see for himself exactly what he was/wasn't eating. Again this met with a certain amount of derision, but then the surgeon (who my husband likes immensely and has great respect for) said a food diary might be a good idea, not just to note his intake but also to highlight any foods that always cause a problem.
Good luck to you both. I can empathise sincerely and feel we are only just beginning to turn the corner ourselves. I think at the 8mth stage we were both so worried about food and weight loss that we felt malnutrition would do for hubby rather than the cancer.
I found savoury biscuits and crackers, with or without cheese were much better than sweet biscuits when I was having a problem keeping food down. I could also manage a marmite butty without problems, it was generally sweet foods and drinks that either made me sick or made me feel sick. I had Bovril to drink and I'd sometimes have it in a soup bowl with half a slice of bread - it seemed to settle my stomach when I was hungry but feeling nauseous. I could also tolerate small drinks of lemonade when tea and coffee weren't going down too well. I found the vomiting problems stopped after having the jeg removed so l did wonder if it was the sweetness of the supplements that was affecting me. I'd had Ensure in hospital but when I came home it was changed to Fortysip, both were sweet but I don't think Ensure was quite as bad.
Thankyou for all ideas and replies, lots of things to try¬!!
Herindoors ~ a lot of the symptoms sound incredibly similar, so thankyou for the ideas, and for taking the time for the in depth reply, which is useful. We will definitely order the book and give it a go. Dave has never been big, but it would be nice to get a few pounds back on him!!!
I hope things continue to improve for you all, as this awful op seems to affect the whole family in some way or another, but at least we are all still here to grumble about it!!!
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Swallowing difficulties 5 months post-op
