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Oesophageal Patients Association
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Gaining weight post op total gastrectomy

I need help to regain weight my husband had total gastrectomy 2years ago thus far lost 7 stones he eats well but no weight gaining so he is deliberate about gaining weight

İf any advice pls share with us

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It depends on what weight he was before he had his trouble.

Losing this amount of weight does sound dramatic and whilst it is more than average, there are others who have lost similar amounts (we did a poll a while ago healthunlocked.com/oesophag... ). The good thing is that he is eating OK and the rest of his digestive system operates well. The next thing is whether he is keeping up mineral / vitamin levels. He will settle in to a new normal weight, and this may indeed be his present weight, so I think that you should not equate weight gain with health as such. Trying to eat to gain weight will probably cause more problems than it is worth.

It is an enormous change to one's body image, not least for other people, but unless you have advice from a medical expert familiar with this surgery that his current weight is actually unhealthy, I would try not to worry about it. Some people gradually regain their weight over a number of years; others don't.

Gently progressive exercise is a good thing that sometimes increases appetite.

I am sorry that this does not answer your question in the way that you may have hoped it might have done.

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I was having problems gaining weight after 4 years post op. Nutritionist Put me on RESOURCE Fruit flavored beverages 237 ml. @ 3 per day. have been on these for 3 years as a food supplement and have gone from 66 kg to 75 kg in that time I am now holding 75 kg . I was Pre. op . 95 kg Cheers Haighey

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Morning. I am three years post oesophagectomy. It was around 21 months before I began to regain weight and muscle. I speak to a lot of patients and many do not regain weight. As Alan says if you are at a healthy weight it may be best to think how good that is

I walk a lot and that works well. Recently I've been able to add some weights and some pull ups into the mix.

Have you had a blood test to check vitamin etc levels?

Keep in touch

Haward

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I lost about 5 stone in total (I am now eighteen months post op) But I was overweight to start with and used to plan (and fail) to lose weight. I am 5' 4" and now weigh 9st. I dropped to 7st. I am stable at 9st and actually like it.

I made no special efforts to gain weight, it just happened and now seems to have stabalised with no efforts from me.

If he feels good in himself and his doctors are not concerned? Then I would just go with the flow.

I can't tolerate sugar now (hypoglycemic) and I believe that this is probably the single biggest factor in my weight being where it is. Pre-Op I would have won the International Cake Chomping Championships.

Good Luck.

Bruce

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Has he got access to a specialist dietician ? Where abouts are you ? Any chance he could be referred to one ? Orla Hynes at St thomas's/Guys is excellent .Tho I'd hate to add to her workload .Maybe you're not in the UK ?

Have you tried enriching his meals by adding milk powder ,butter ,cheese ,mayonaise etc ? foods things - adding milk powder as well as butter to mashed potatoes ,milk powder as well as full fat milk to porridge/rice puddings .Add grated cheese to stuff - fish pie ,pasta sauces .Honey to yoghurt ? Milk jellies ?

Make everything "nutrient dense" ,add calories .

There was a receipe booklet on the OPA main site but I see it's being reviewed and not available at present .

What sort of food does he like and I'll try and think of other stuff .Does he have to be careful with sugar ?

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Thanks for your advice

He used Resource protein but he is tired of it

He eats much but he gors to to

Let at least 7 times in a day his stool is not solid somewhat like diarhoea it is delibitating

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I think he needs professional help .I don't know but sounds as though maybe the food is going straight through him and he's not absorbing the nutrients he needs .

Is there a dietician/doctor/nurse he could speak to ?

I have no medical experience but I have heard that pysllium can help with loose stools . it's a water soluble fibre so absorbs liquid and can slow down the digestion process .

Here's an extract about other foods that have the same effect

"Sources of soluble fiber: oatmeal, oat cereal, lentils, apples, oranges, pears, oat bran, strawberries, nuts, flaxseeds, beans, dried peas, blueberries, psyllium, cucumbers, celery, and carrots."

But honestly I think he needs to see a doctor .

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Violet Queen Australia

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Is there a difference between having your total stomach removed and the other operations? I'm five years and nine months post Total Gastrectomy and am still attempting to regain weight. Prior to the operation I was a fit 140lbs as I maintained a active lifestyle. Never been a smoker or drinker, I've now trouble making 124 lbs. However I'll still keep trying to reach nine stone I. e. 126lbs and more if possible. As of today I've started to eat more potatoes, bread and ice cream.

After a lay off of four months from my morning run due to double vision, my vision has improved and am pleased to be back running. So many time in my life I've been told certain things were impossible and discovered them to be possible.

In December of 2007 I lost my wife to Alzheimer's and was told she had reached the final stages and was offered palliative care as she had a short time to live. I rejected all offers of help and cared for her at home on my own. She survived almost a further five years from the forecast date of her demise recorded in her medical diary!

In early October I aim to enjoy my 85th birthday. Though I live alone I'm not lonely: too busy with the cooking, washing, ironing, shopping and house keeping. I started out life alone, no family or home and am back where I started, except for the only support of a wonderful daughter who visits from time to time.

I take no medication and have only the very odd instances of dumping syndrome. Life has been real bad before it's got so much better. Please God it'll be the same for you Nurcanak.

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I believe that weight loss with a total gastrectomy can be much higher than after an oesophagectomy. After a while the important issues are not losing further weight, keeping up a healthy level of nutrition, and maintaining a 'new normal' weight.

You certainly have been through the mill, and you have did really well to look after your wife. I am glad to think that you have come out the other side from your troubles.

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Alan, Thanks for your support. I've upped my intake of a wide variety of food. So far there have been no ill affect and am enjoying eating. I've not experienced dumping or burning sensations. My only medication is the twelve weekly B12 injections.

I'll get back in a week or so to report on progress with my weight. One problem that may restrict gain might be my work-outs; running, walking, push-ups and light weight training.

I've always kept fit; competed at International level sports.

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Well done on the physical fitness! Keep it up and see how the increased food intake goes!

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I had a total gastrectomy 4 years ago this June. Weighed 15 stone before operation that didn't go to plan as the join of the oesophagus and intestine had to be redone after a week, instead of 7 days hospital I was 7 weeks and lost 2.5 stone in that time, when home and with feeding through a tube at night over a period lost a further 2.5 stone. I eat pretty well now but have stayed around the 10 stone mark for a long time now, fluctuating up and down by 4 or 5 lbs. I play golf when I can and walk and my specialist nurse and dietician seem to be happy with my maintaining the 10 stone average. One has to be careful eating as can over eat and I find I do bring food up at the start of a meal sometimes but once the first couple mouthfuls gone seem to be okay. Swallowing can be painful very often and continues to be, be it food, pills or liquids. I am happy not to be 15 stone again as was over weight for sure but have told friends this is not a good way to lose weight plus it is expensive clothes wise going from XL to L to M to S. I am sure if there was a major issue with the weight loss the specialist nurse/consultant would be aware and assume you also under a dietician who would also be on top of it.

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Many thanks all for your advices we are from Turkey

I hope all of us is gonna be better

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I ate a lot of fish paste at first, I got that when I went on a holiday to Portugal but you can get it almost everywhere - I am 5ft and went down to 7stone but I am back to 8 stone again though I went up a bit above that when I was pregnant with my two. I am a 9.5 year survivor at this stage and was diagnosed when i was only 32.

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Hi I'm 22 years post op I had the same problem, The solution

DRAUGHT GUINNESS.

I went from seven stone to 15 Then got back to 12 stone. Try it. And all the very best yours John

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What was his original diagnosis?

Was it stomach cancer or eosophagus cancer?

This is important - if it was eosophagus then he will still have some (maybe quite a lot) of the tissue from his stomach. In this case he should still be producing some hydrochloric acid and proteaze enzyme , which will facilitate digestion of protein.

If the carcinoma was purely gastric then the advice will be different.

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He was stomach cancer there is no stomach tissue at all

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I am sorry to hear that, but if he still has his eosophagus then he will not have some of the problems which most of the members of this site suffer from.

Two years is early days in the recovery from such a major procedure. I did not gain any weight (lost 4 stone from 13 down to nine and I am 6ft 2ins) for three or four years. So don't worry too much.

1)What age is he?

2) Does he suffer from diarrhea?

3) Does he suffer from Dumping &/or Hypoglycemia?

4) How many meals is he eating each day?

5) Is he taking a multi-vitamin supplement?

6) Is he receiving injections for vitamin B?

7) Do you know which anti-biotics he was given after the operation?

8) Was he given chemotherapy and/or radiation treatment before &/or after the operation?

With this information we can try to get you some useful advice.

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1)he is 46

2)yes

3)dometimes

4)5/6

5)yes

6)supradine allday

7)3 cures before and 3 cure post op and radiotherapy post op not know antibiotic

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So he is young and was fit before the operation and I hope he is still handsome!

Certainly you are doing all the right things. It is impressive that such advanced medicine is being practiced in Turkey.

Researching -- will come back ASAP.

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Now we began taking creon 25000

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If his Pancreas is OK and healthy then there should be no need to take Creon.

I had a bad experience with it but I accept that it might help to augment the functions that are missing because he has no stomach acid or Pepsin or mechanical disintegration.

(If you have problems with my English please let me know)

If you are devout Muslim then also you may have an objection to Creon?

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What was your bad experience if you don’t mind me asking

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I fall into a small subset of oesophagectomy patients - namely those who have also had their gallbladder removed. So my comments may not be relevant to everybody.

This procedure (Cholecystectomy) results in a more or less continuous stream of unconcentrated, fresh bile entering the Duodenum from the Liver. This has consequences since the availability of Bile on demand to deal with a fatty meal is curtailed and, more particularly, the chemical environment in the Duodenum is rendered more hostile in the context of up-welling reflux via a defective Pyloric Sphincter. Further there is less timely availability of alkali Bile to buffer acidic Chyme descending in the reverse direction.

Creon is extracted from pigs, [which must have implications for anyone observing Kosher or Halal stipulations] and is designed to supplement the naturally occurring digestive enzymes that are secreted by the Pancreas [in addition to that organ's other role as the source of Insulin]. Hence a prescription for Creon is only appropriate if Pancreatic insufficiency has been properly diagnosed.

For general practitioners, whose detailed knowledge of digestive medicine is lamentable, to clutch at straws is understandable; on the premise that " well..a partial gastrectomy must impact digestion so lets' see if more enzymes could help redress that deficiency". However this supposition ignores the fact that Creon enhances the breakdown of sugars which will exacerbate the hypoglaecemia which follows dumping.

I am sure I experienced this, together with more acute reflux as mentioned above and feelings of nausea. It certainly did not have any impact on reducing my acute Bile Acid Diarrhoea. I cannot say if there was any reduction in possible malnutrition due to impaired absorption deriving from either incomplete breakdown and/or faster transit time.

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FIRST THOUGHTS -

His body has had a massive assault from radiation, chemotherapy and surgery.

Progress will be difficult until the entire digestive system (all 7-8 metres) has been rehabilitated - this will be a slow process similar to weaning a child and accustoming it to a variety of solid foods.

If you are Muslim and therefore not used to pork then Creon might produce an allergic reaction with worsening wind and diarrhea. If not and the religious aspect does not apply then why not experiment to see if it helps.

The Pancreas secretes (about 6 cups a day) of liquid containing bicarbonate in order to neutralise hydrochloric acid coming down from the stomach. But he has no stomach and so does not produce any acid to counteract the bicarbonate.

The result of this is that the intestinal fluid will be too alkali (high pH). This will have an adverse effect on many things, particularly the vital bacteria which should be inhabiting the GI tract.

255/1:Turkey has delicious yogurt. Is he eating this (live variety) regularly?

255/2:Can you obtain apple cider vinegar there?

255/3 Has he still got his Gallbladder?

255/4 Is his diarrhea a pale sandy orange colour?

[ I have put a date/ref number so that we can keep track of the info]

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Many thanks for your support

Creon does work well yes we are muslim but he does not know the pork content what can we use equal creon?

255/1)yes he eats yogurt but like it i also prepare combucha yea it is also fermentated

255/2)yes there is not used

255/3)he has gallbkadder

255/4)sometimes he says it depends on what he eats it seems somefoods not digested

255/1

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255/1) spelling mistakes sorry he does not like yogurt combu tea he drinks mostly

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255/1a: Does he like Cacik?

255/1b: Does he like Beyaz Penir?

255/1c: Is Yakult available yet in Turkey?

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İ think you know too much anout Turkey

255/a yes he does

255/1b likes but he likes kaşar more

255/1c i dont know Yakult

Many thanks for your ass

Stance and cooperation

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Kombucha

255/1d:

I am not personally familiar with Kombucha, which is claimed to be pro-biotic. It is the same principal as Apple Vinegar and it is good that it is acid in order to combat the pancreatic bicarbonate but too much would cause acidosis.

I have several other concerns:-

Making it at home has the possibility of bacterial contamination.

The active micro-organisms are an uncontrolled mixture of different yeasts, probably including Candida and these could be very risky for him......remember that his immune system is low because of the chemo as well as loss of lymph nodes.

If all the sugar has not fermented to acetic acid then it could be a factor in Hypos.

There is the possibility of too much caffeine which is also an agent in causing Hypos.

I hope he does not drink it with food as this will cause too much dilution/lubrication and cause dumping if he moves around soon after eating.

Sorry this is mostly potentially negative; it is a question of being aware of the negatives and deciding if they can be controlled and are out-weighed by the pros.

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Creon.

Unfortunately there is no alternative product which does not come from the same non-halal source. I presume to say that under the circumstances it comes under the doctrine of necessity and so is mubah ?

Be aware that this medication can have a powerful effect on blood sugar levels, both increasing or decreasing randomly. So to avoid exacerbating hypos the dosing and timing of administration are important.

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He has begun to take protein powder by advice of dietician and he is taking solgar digestive enzymes

His D3 is under the base rare (avarage is 30 his rate is 10) so he is also taking

We hope any improvement by doing these advices

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After 3 yeats 7 mounths no

İmproveöemt😕

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