My husband is 8 years post Ivor-Lewis op. He has been having hypoglycaemic attacks for a lot of that time, but recently they have been getting more regular and worse. He has the usual weakness, dizziness, sweating that he has always had with them, but he is now also getting flashing lights and confusion. He also has difficulty passing urine when having the episode. This is happening pretty much every evening 🙁
He has spoken to his GP about it, and has tried all the usual suggestions of sweets etc when it happens. But nothing seems to help. He has also mentioned it to the gastrology consultant he saw recently, who told him, more or less, that he has to live with it because there's nothing to be done. He is not on any medication for this.
He also has an eating disorder and body dysmorphia, which means he sticks rigidly to both the food he eats and the time he eats. I have explained that he probably needs to eat smaller meals and more often. But he won't change because he is scared he will put weight on.
I am at my wits end. He is in bed right now with another episode. The GP won't help, his original surgeon discharged him a while ago, and the latest consultant just dismissed our concerns. We can't afford to go private. Any suggestions gratefully received. Thank you.
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Jessieblossom
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Hello, I think you both have a difficult situation. For the body an hypoglycaemia is a crisis. The amount of effort and energy the body needs to spend correcting it is large and it is likely to wipe your husband out for several hours. I imagine it doesn’t happen with all foods, for example meals that only contain protein. So, I would try and find out what food can be eaten without this effect (i know that is a challenge but it is such a relief to discover there are things that can be eaten without this effect). For example I can eat eggs and nothing happens. I also find no fluids with the meal help. I also know processed wheat is likely to give me a problem. Then if dumping does start to occur then for me it is immediately a full sugar cola and six dextrose tablets. That tends to correct it pretty quickly (seconds). The sugar doesn’t make me gain weight as we have to eat such small portions through the day.
Hi, I have found that dehydration also plays a role in dumping and seems to aggravate the hypoglycaemia and/or its symptoms. Because of this, I've found that the fastest way to relief is to drink something cold. It needn't be sweet - even sugar free soda works for me. Perhaps this might work for your husband too?
Unfortunately, it is really difficult to prevent dumping, because there seem to be so many variables that can contribute. Not only what you eat, but how much and how fast you eat, its consistency and temperature and the time of day can all play a role. It does indeed place you both in a difficult position if your husband is not willing to try out different options. Since he clearly attaches a lot of importance to diet, would he perhaps be willing to consult a dietician? If so, perhaps you could get your GP to refer you to one who understands dumping syndrome.
Incidentally, I also have to watch my weight (even after the IL) and have found that two small meals, eaten at about 11 am and 3 pm, work best for me. Unfortunately, 'little and often' was not a good solution for me. I was gaining too much weight whilst feeling constantly hungry. I might have some plain yoghourt before going to bed, but I no longer eat 'dinner' as such. I watch my overall calories and I also try to avoid eating too much of foods that are likely to stimulate the production of either too much acid, or too much insulin.
Good luck - I hope you manage to find a solution that will suit your husband.
I’m 8years also since my operation. After the first six months I had extreme dumping which resulted in seizures. Like you tried my consultant, doctor, dieticians. I even saw a neurologist because they thought it was epilepsy.
I had different tests and it was hypoglycaemia. I was given a glucose monitor and told to keep a food diary. I would test my fingers with pin pricks 20 times a day.
I eventually seen a good endocrinologist who had Patients who had the same symptoms as me he put me on Diazoxide, there is also Acrabose. Also I had to fight for a Libra sensor which tells me when my glucose is going low and I take 4 jelly babies. I still get low glucose after meals but I have no seizures.
Everybody is different what works for one does not work for another,
Hypoglycaemia can be a very serious condition. You need to persist with your consultant/doctor/Macmillan nurse
Also your husbands needs help with his eating disorder/Dysmorphia.
I am very sorry to hear this but not surprised about the lack of help from the medical profession. They really don’t know what to do about it and the there does not seem to be any push for them to try to find a solution.
I am almost 5 years post op and suffer from dumping daily.
The same symtoms as your husband but I don’t have the confusion yet. I pass out before that happens I think.
Grazing instead of meals is the only thing that helps me but as soon as I eat the ‘extra bite’ I am gone into dumping. Basically if you have enough to satisfy yourself eating it’s like dumping is the ‘reward’.
I get quite nauseous with it as well so the things I do to try to help.
I take CBD oil three times a day
I take Carafate daily to help line my stomach.
I try to graze instead of eating three meals a day.
Deep breathing and meditation.
Exercise, I find walking every day helps my dumping and issues I have with my heart post surgery as well.
I agree with the other comments on here. I too have had dumping and hypoglycaemia episodes too. Sometimes it’s a hypo from the Dumping so I carry a 100ml can full sugar coke and it will lessen the length and strength of the side effects. Sometimes I get hypos not related to dumping either cause I’ve not eaten enough or I’ve left it too long between food. I have to eat every 1 and a half to 2 hours. Sometimes if I’m active I nibble snacks all the time, crisps, bananas, chicken bites, baby bel cheeses, choc digestive biscuits to keep me topped up. You mention his eating disorder and reluctance to put on weight the opposite to most people’s ambitions on this subject here. I would go back to the Gp to address this issue or if he cannot he should obtain professional help for your husband in this regard. For now keep him topped up with foods he likes. Small amounts very regular and keep a food chart to spot triggers for dumping. Xx
Lots of good advice here. Have you had a look at the Oesophageal Patients Association website. There is lots of advice and information you and your husband might find useful. There are excellent leaflets about dumping and diet etc. I am 14 years on from my operation and still occasionally experience dumping an hour after eating but I find if I eat/drink something sugary straightway that works for me. A hot water bottle is useful if I have a reaction straight after eating. Hope all improves soon.
If your husband eats yogurt he could add whey protein powder which will keep him feeling full for longer, same with pea protein in soups. Scrambled eggs or omelette cooked in coconut oil are a brilliant start for the day. What about fish - he needs fish oils anyway and D3. Hemp oil is good too. Is he taking vitamin and multi mineral supplements . Any operation on stomach etc. can cause anaemia - has he had ferritin levels checked? Mine were very low and I now take ferrous fumarate with vitamin C daily. I do not drink anything sweet, only milk in tea.
The diabetic traffic light system of getting protein to carbohydrate ratio is good to follow. I find meat is a better protein balancer than fish e.g. can eat a little bit of ice cream after a meat portion, but not fish. Eggs are brilliant and all lean meats are good sources of protein, iron, energy and low on calories . Vegetables are low in calories , but some can be tricky e.g.broccoli doesn't suit my bowel but asparagus does. Fruit can be high in sugars, so check e.g. Grapes, but strawberries low. Also fibrous vegetables or fruit can be tricky for some and okay for others. I find I can only have small portion of apples, parsnips and sweet potato. I van eat white potato or a few chips or bread - - but only toasted. Crackers are okay, cake and pastry are claggy. I buy Rocks unsweetened blackcurrant squash- good for vitamin C and I add some fizzy water to it or filtered water. Fizzy helps me swallow tablets more easily. I do have butter on toast, but never eat more than one slice a day. I buy the squash from Tescos . I stock pile when it is on offer, but only use a small amount in drinks.
I have never eaten cheese, seems to upset me but it is also a good source of protein. As for cereals, only porridge made with milk suits me. I don't like it with water. I have 20 g oats and make it up to 150 with milk - 2 minutes in microwave. on high. Sliced unsweetened tinned peaches in some plain yogurt with whey powder is a nice breakfast. (or sweetened tinned peaches and just rinse off the juice. Lidl's sell nice inexpensive tins.
Bread can be a problem, but wholemeal is better than white - lower on the glycaemic index, same with crackers. Lidl's do a ryvita type cracker and a round low g.i. Wholemeal loaf. Watch out for soya in breads -can really upset some people. Nairns oat crackers are nice.
I need to drink a fair amount of water, because I do not make enough saliva. I know the advice is to drink half an hour before eating but I really cannot eat without having a drink of my blackcurrant plus fizzy at the same time - small sips.
I really do hope there is some useful information in here for your husband and you.
Four things really helped me - my daughter told me about the glycaemic index
Dr. Myhill sells multi mineral powder on her web site and recommended the other supplements I take. (Sarah Myhill - has a web site )
My daughter's friend who has 2 PhDs in the study of blood told me about the anaemia and the low ferritin.8
All my friends at church prayed for me - before the operation (total oesophagectomy), during the 3 months continuous chemotherapy and six weeks radiotherapy. I had a brilliant surgeon, but as you have found post operation support can vary.
There is a gut brain axis and oesophagectomies can affect the stomach a lot. Some people can completely lose interest in food and eat by the clock etc. Others feel they are grazing all the time. It's a huge life event. My husband has been absolutely brilliant. It sounds like you are being just the same for your husband.
Tell your husband I had my operation14 years ago. It's trial and error, but I hope some of this information helps.
I’m 5 years post surgery and chemo, and experienced a lot of dumping in the last 18 months. Not sure what the cause or triggers are.
however, I have just been diagnosed with IBS so to alleviate this I have been following low Fodmap dietary recommendations (found loads of info online) and haven’t had an episode in the last 2months.
It may be worth considering, all the best and hope he finds what works for him.
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