I had my oesophagectomy 6 years ago, and apart from dumping and reflux I've been quite well.
A few months ago I noticed more reflux, or even vomiting after meals, and sometimes gagging during meals .
Of course I immediately became convinced the cancer was back. I rang the specialist nurse, and a few days later I had a Barium swallow.
Wonderful news! It's not the cancer, it's gastroparesis. My stomach is full of old food it can't digest or move on.
Which means I've got to change my diet. I'm delighted that's the only problem I've got, but it's more difficult than it sounds.
I can only eat easy to digest things like white bread or mashed potato. No high fibre foods. So I'm a vegetarian who can't eat vegetables. And the suggested things like soup and porridge are the very things that make me dump. And milky things have always upset my tummy.
White toast and peanut butter is tasty at first, but I'm getting sick of it! Any good ideas? There must be hundreds of things I haven't thought of.
Jane
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Wow that's quite a challenge. I think many of us struggle with eating even years after surgery, but we're so grateful to have survived that we don't complain.
I love Davina McCall's power balls, a blend of peanut butter, honey, nuts , cocoa etc, and they're easy to carry around.
I would recommend asking to see a specialist dietician, I.e. One attached to the upper GI team, and seeking their advice. It will likely involve trial and error.
I empathise, again, I think we all attribute every little nuance and problem to a potential recurrence.
100gm dessicated coconut or 50gm dessicated coconut and 50gm oatmeal
25gm sesame seeds
Melt nut butter and honey in a saucepan and stir til melted together
Remove from heat and add rest of ingredients
Take teaspoonfuls of the mix and mould into a ball, then roll in more of the coconut, sesame seeds or cocoa. Chill and store in fridge in an airtight container.
I carry them around with me and have with a cup of tea etc whilst at work. They're satisfying yet not as sweet as chocolate etc.
You could add finely chopped dried apricots, seeds or anything else you fancy.
A batch lasts me 1 - 2 weeks.
To overcome the milk intolerance I now breakfast on a third of a pot of yogurt mixed with an oaty,nutty, seedy breakfast cereal with added seeds and nuts. Takes a bit of eating but lasts well.
Good luck and its all trial and error, plus not getting to anxious about it!
The "Advice1" appears to have been duplicated as this is my username as you will see from my reply!!Have reported to Admin to sort out as it is not me replying to the OP.I can even Edit the other posters replies ,very strange.
As above you could try asking about metoclopramide? Warning; It caused massive anxiety attacks with me (a known potential side effect).
Every few months now I have a lower stomach exit dilation. That does the trick for me instantly. Like you I am also a veggie and have found that making changes with my diet does make a difference +/- . The best and most stable thing for me is to eat really small amounts and at regular intervals. If I am honest I struggle with the discipline in this. But I understand now what is going on so don't tend to panic so much with the "it's back" feelings.
but it is not written for people who have had oesophagectomies. Usually the solution is either a stretch of the pyloric sphincter at the base of the stomach; or medication. But I imagine that sometimes changes to the vagus nerve system might have contributed.
I think I would be inclined to keep a food diary. I had always thought of white bread as being a bit 'sticky' and less likely to pass through the system, but this is happening lower down the system than the oesophagus.
You will still have the tendency for dumping syndrome, so I would tend to go for diabetic-type products. I think an Upper GI specialist dietician's help would really be helpful.
Try milk substitutes such as rice milk / soya/ A2 milk and ask for help at the local health food shop. There are some factsheets that you might like to browse through opa.org.uk/pages/factsheets...
As you go through this trial and error process, do have your mineral / vitamin levels checked every so often to make sure you have the right balance.
I like you am also a vegetarian, I am only thirteen months post op (IL 2part) but I can see how difficult your diet has become.
You don't mention eggs or rice or cheese or are you a vegan who wouldn't have eggs?
You can do a lot with eggs (FR) of course and they are quite nutritious.
I had great difficulty coming to terms with taking creon before I ate anything having been a veggie since the sixties, but I just felt survival was more important for the time being.
What about Tofu, Quorn and Soya are they all too high fibre for your system?
I am OK with most vegetables, but I can't do any cereals or bread, cakes and pastry which I found difficult and anything which is sweet gives me dumping straight away although it didn't for the first six months. I think it seems to change as you go along.
You say you suffer from reflux still, are you taking any PPI's and do you have your sleeping position elevated at head position? That can have a really positive effect on the transit of your food whilst you sleep, and reduce the risk of regurgitation. An elevated head to the bed made a massive difference to me, but I keep getting SIBO and really uncomfortable food dumping.
What I have got into the habit of doing is before I commit to a particular food, I do a small taster on one day to see if I have any reaction and gradually build up a list of foods which will work for me.
I'm sorry I can't be any more helpful, but you must have a greater intake of nutrition than you seem to be getting at present, you could also try banoffee or what about marmite or vegimite on your bread or nuttolene. White bread is really poor nutrition so try to buy local bakers uncut loaves rather than the mass produced pap, and if you can have eggs you can always beat up a couple of eggs and soak it into bread and cook for 'Eggy Bread' and grate some cheese into those mashed potatoes! Just a little at first.
Good luck with it all Jane and I hope you can discover a greater range of suitable food, let me know if I can be of any help.
I really don't like eggs, but I do eat Quorn occasionally . I don't really like it, but I make myself eat it.
I love Marmite. I have to be careful not to eat too much because it's salty, but it's delicious with butter and a soft white bakers loaf. I haven't had it for a while, but there's some in the fridge so that's breakfast sorted!
Judith and Bruce and Alan, I was prescribed domperidone, but I can't take it because I also have Dystonia a neurological condition, which makes me jerk and twitch all over. It's a real nuisance, and very tiring. And guess what the side effects of Domperidone, and all similar drugs are? They tend to cause twitchy movements! So I'm determined to sort this out by my diet.
I guess what I found after my surgery was very simply (and not in any way meant to sound patronizing) we are all just hugely different in what we can and cannot tolerate. Almost every adverse thing I encountered would be treated with drugs. It soon became apparent that these very drugs were then causing symptoms that required more drugs to treat their symptoms and the cycle went on. "Motility" drugs can have rather wide ranging side effects. Some, I read are used in the treatment of tourettes.
Over time I have managed to get off all of the drugs with the exception of Acarbose (for hypoglycemia) and manage to control most of my negative issues by diet and timing of eating. No food after 7:00 in the evening stops me having any reflux. Berries for breakfast helps keep my sugar levels good and stops me bulking up, with the resultant chest pains.
Some days I just don't eat. I can feel the discomfort shortly after waking and know that I will suffer if I eat. It is probably not ideal. But it works for me and keeps me feeling pretty good 90%+ of the time.
I do wish you well. Please keep posting on your progress.
Thanks Bruce. I agree it's better to get off meds if possible. I've tried several times to get of PPIs, but I just can't do without them. I'm determined not to even start Domperidone!
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