I had my operation six weeks ago and ... - Oesophageal & Gas...

Oesophageal & Gastric Cancer

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I had my operation six weeks ago and am suffering from dumping syndrome every evening after a light evening meal.

Danko profile image
10 Replies

I am experimenting with different food and trying to eat snacks as recommended. I have lost weight as expected but was fairly slim to start with so this is beginning to concern me.

I am taking Fortisip but it is not very pleasant. I realise it is early days for me but wondered if anyone can suggest things to try which may have worked or them.

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Danko profile image
Danko
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Thorno profile image
Thorno

This is a very common problem post-op. Almost 2 years on I am still experiencing discomfort after eating but nowhere near the level of the early days (which consisted of pain, sweats, muscle aches, nausea etc.). I'm afraid it's a case of experimenting with different foods, little and often as suggested to you, and finding out what works for you.

I lost a lot of weight in the early days and was told to eat food with lots and lots of calories but I have a problem with sugar and finding highly calorific food with low sugar is pretty tricky. Hopefully your hospital dietician will be able to advise you.

In terms of things that could help, again experimentation is probably the way but I tried Maalox Plus and various other digestive aids. Nothing really helped that much to be honest and gradually over time, things started to improve and meal sizes increased as my 'new' stomach got used to it. I don't think it will ever get to the point of 'normality' but it does seem to be easing.

Your body has been through a massive ordeal (never underestimate it, it's one of the biggest operations there is) and it will take time and perseverance.

All the best,

Peter

Danko profile image
Danko in reply toThorno

Thanks Peter, that is very encouraging.

I have decided not to try and eat too much, especially in the evening.

I am also going to try different things and keep a diary of what I have eaten and any after effects.

Regards

Martin

liz_crisp profile image
liz_crisp

Hi Danko,

Six weeks is very early days if you are getting dumping try to cut down on the amount you eat at any one time, I was having literally half a tea plate of food 6- 7 times a day and nibbles in between, Avoid foods that are high GI. Try to add calories to your food by adding creme fresh or cream to soups and sauces, Add milk powder to milk to fortify it, Pack yourself a lunch box like the children take too school with snacks and nibbles ie cubes of cheese, dariylea triangles, little yogurts, dried fruit, a few nuts, smoothies, chocolate etc (i avoided stodge like bread and cakes as they filled me up and didn't travel well through the digestion) keep it with you so you can nibble all day, chew everything well, don't drink and eat together, things will improve with time and you will be able to eat more at one time as things go on but it is a slow process, think more in months than weeks!!!!

As for fortisip I hated it too but a good vitamin tablet and some homemade smoothies helped me more. I went down to 55kg and at 5'9'' looked like a belsun survivour, Now 2 1/2 years on I am a size 8-10 and weight 68kg, I even have curves. I go out to eat with friends often, and can now even manage the odd glass of wine with dinner!!

Good luck

Liz

Danko profile image
Danko in reply toliz_crisp

Thanks Liz

I will try your suggestions. In fact I have been having a bacon bap most lunchtimes and actually enjoying it. I now realise the bread has been filling me up and leading to problems later in the day. I substituted a slice of toast for the bap today and, so far, feel better for it. I really appreciate the comments and advice I have received from members of the group.

Regards

Martin

Yes I am afraid that it is very early days.I am 16th months post op and still have probs with eating,dumping etc BUT as other reply not so bad as it use to be,It gets better over time.I still struggle with food and keeping weight up.It may be not what you want to hear but this is so common after the operation we have.It gets easier to manage and live with over time.I am apart from those things in good health and doing and feeling great

Griff

Danko profile image
Danko in reply to

Thanks Griff

I realise I need to be patient and appreciate your comments

Regards

Martin

You have our sympathy, but the only consolation is that you are not alone and many people do get these problems.

Try and see a specialist dietician.

Keep a food diary.

Ring Dawn on 0121 704 9860 and she will send you a recipe book with some ideas to make the fortisip more palatable.

As long as you have the nutrition from these fortisip (and there are some alternatives) then do not worry about losing weight, and certainly do not try and eat to try and gain weight. Little and often is the key. Losing weight might make other people worried about you, and might make them say unsuitable things, but it is not a sign of failing to make progress. You will probably settle down at a new normal weight in due course.

Try thinking about whether you might have developed lactose intolerance and have a go at avoiding dairy products for a while (try soya milk instead of cow's milk etc). Sugar is a real issue re sugar:insulin levels so you may have to start reading the small print on food packages and avoid the high-gi index foods as suggested. The treatment does play havoc with your taste buds for a while.

There is some more information here: opa.org.uk/regional-shop/lo...

Good luck with it. Don't worry - it will improve, but it is very frustrating for you and for those who prepare the food until you can work your way out of it.

Danko profile image
Danko

Thanks Alan

I was so pleased to receive such speedy and good advice.

It is good to hear from members who have already gone through the stage I have reached.

I will ring Dawn for the recipe book and have started a food diary today.

I thought the medics were being cautious in their predicted recovery period but now realise that I will need to be patient and accept that it will take a long time before I reach some sort of equilibrium.

Regards

Martin

OPA_LarryR profile image
OPA_LarryR

Just wanted to add a couple of comments. I've suffered with dumping syndrome for 6 years since my surgery and although I have it under better control than in the past i realise that I will probably have it for the rest of my life.

As others have said most people do actually manage to get over it and have reduced suffering over time.

It takes time to find what "works" for you but here are some of the things I've learnt.

1. NEVER over eat. It's hard to learn but the sooner you get adapted to snacking every hour or so the better.

2. NEVER move around while or immeadiately after eating. One of the key factors in dumping is the movement of undigested food into the small intenstine too fast. This is accacerbated by moving around as we have a "gravity" system after surgery.

3. Chew everything really well. Again it takes time to learn. Try counting to 40 next time you are chewing and you'll see how much you could really do!

4. Drink before meals. If you do drink anything while eating VERY SMALL SIPS can sometimes work.

5. Try to keep sweet things to th end of the snack. Dumping syndrome is a sugar/insulin related issue and in simple terms if you have sugar at the commencement of the snack it will increase the chances of an attack. If you finish with something sweet it can help to alleviate the onset of late dumping which is caused by hypo glycemia which oddly enough is low sugar!

6. There are some slow release carb products that are worth including in your diet such as....

Dark Rye bread and "pumpernickel"

All bran - unsweetened

Porridge

Much better than white breads of any kind or things like corn flakes.

Hope some of those ideas are helpful to you.

Good luck

regards Larry

Danko profile image
Danko

Thanks Larry

I appreciate your additional comments, especially the need to avoid moving around after eating. I'm afraid I'm the sort of person who always needs to be 'doing things' so I am just going to have to learn to relax.

The advice I have now received from five members gives me plenty to go on. I am so glad I joined the group.

Regards

Martin

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