After nearly eight years: Hi everyone... - Oesophageal & Gas...

Oesophageal & Gastric Cancer

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After nearly eight years

patchworker profile image
19 Replies

Hi everyone, I had my "shark bite" oesophagectomy nearly eight years ago, I've had all the usual problems, dumping, reflux, etc. and I've been underweight and thin because of lack of appetite, and vomiting.

Then three months ago I suddenly started to feel hungry, and craving fruitcake of all the strange things. and I'm putting on so much weight I'm in danger of getting fat!

I would love to know what's suddenly changed inside me!

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patchworker profile image
patchworker
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19 Replies
rayw55 profile image
rayw55

I have no idea but when you find out if you bottle it you will make a fortune 🤑my wife keeps saying I look like a skeleton now even though I think in fine 😜

patchworker profile image
patchworker in reply to rayw55

Maybe the secret is in the fruitcake!

Mayan profile image
Mayan

Wow l haven't felt hungry in almost 9 years since my op,how strange,do keep us posted on if your hunger continues Enjoy it while you can,I reckon x

patchworker profile image
patchworker in reply to Mayan

I asked my surgeon what had changed, but he just laughed!

Mrtoad profile image
Mrtoad

You're pregnant!

patchworker profile image
patchworker in reply to Mrtoad

What a wonderful idea! But that would be a miracle!

fieryvelvet2000 profile image
fieryvelvet2000

Oh wow!!! I have had no sense of hunger since my operation 4 years ago but you have now given me hope that it might happen, I would love to put on some weight. Well done you and I wouldn't worry too much about getting fat. Can I have a bottle?!!

patchworker profile image
patchworker in reply to fieryvelvet2000

I wish I could give everyone a bottle!

Scrumtasticjojo profile image
Scrumtasticjojo

Hi Patchworker- I had my oesophagectomy in Feb this year at the age of 43 - everyone thought I would lose masses amount of weight - and to be honest I was hoping I would given that I was an unhealthy weight to begin with. However on day 10 in the hospital I smelt the toast being done for breakfast and my hunger kicked in after being on a clear fluid diet (which I was told would probably vanish). Once coming off the feeding tube I've managed to put weight on. I felt I was alone in this as I tried googling here to see if people had actually put on weight and not lost it through this procedure but found there was a thread on here that only a handful of people had similar experiences who ended up at WW :)

patchworker profile image
patchworker in reply to Scrumtasticjojo

I suppose it depends on exactly what was taken away during the surgery. I think there is a particular part of the stomach that gives off a substance that makes us feel hunger.

Plus it's not just feeling hungry, it's if we can swallow or not. And every one of us is slightly different.

But we're all very lucky to still be here!

Scrumtasticjojo profile image
Scrumtasticjojo in reply to patchworker

I agree about being lucky and being here- if I had not pestered my doctor and got the endoscopy this time last year I would be in a very different situation today- my appetite was suppressed for a while whilst having post-op chemo, but as soon as chemo finished and I got my taste buds back I started enjoying food again.

I did have all my oesophagus removed and top part of my stomach/ gullet removed also had I also had 2 dilations done as I had a stricture but I have still got the same appetite before albeit in small portions.

TerriBeikert1962 profile image
TerriBeikert1962

I am 11 years post op. I would love to be so lucky! I miss the joy of food and cooking. Keep us posted.

brucemillar profile image
brucemillar

I just don’t get hungry now. I also managed to completely lose my sense of smell. I mean, really, it’s gone. I smell nothing, not even petrol or aftershave (there’s a joke there somewhere).

patchworker profile image
patchworker in reply to brucemillar

We can understand not feeling hungry after our surgery, but loosing the sense of smell is strange, Is it the chemo that caused it?

I didn't have chemo, I had so many complications with the surgery, and a month in ICU and another month in HDU. that they thought I wouldn't survive chemo.

brucemillar profile image
brucemillar in reply to patchworker

The Chemo is a strong suspect. I was so ill, I never really paid attention. Then as I recovered I noticed it, but thought it would just return on its own. It didn’t. It is odd. Mrs M has to tell me how much is too much with aftershave etc. I just cannot smell it. Not even a whiff. I can imagine it. It has its advantages on some commuter trains.

gutlesswonder profile image
gutlesswonder in reply to brucemillar

Hi Bruce

Most intriguing.

How is your sense of taste?

brucemillar profile image
brucemillar in reply to gutlesswonder

Taste seems okay. I can certainly taste different things. But I can’t even smell petrol now when it’s under my nose making my eyes water.

gutlesswonder profile image
gutlesswonder in reply to brucemillar

I like to think of myself as a Sherry buff (afficionado with a th)

Post op I get no 'nose'... it smells like acrid alcohol and tastes unpleasant but, if I eat a cracker/dorito etc then the taste is restored to how I remember it.

Very odd.

Smell is registered in the olfactory bulb high up in the nose while taste emanates from the tongue - there is a complicated interaction between the two, which depend on different nerves for their connection to the brain. In many instances what we perceive as 'taste' in in fact smell.

Hence the intrigue, if one is affected then that should be reflected in the other.

Worthy of further research?

To be continued

brucemillar profile image
brucemillar in reply to gutlesswonder

I was told by (I think my Oncologist) that it is not unknown for the hooter to malfunction as a result of chemo. His expectation being, all would eventually return to normal. It hasn’t, and the tinnitus remains constant. If it sounds like I am falling apart? It’s not like that. These are background issues, that I often forget about. Recently the local farmer sprayed his fields with human sewage, driving many to complain. People looked at me bewildered as I strolled along walking the dogs. I smelt nothing. No bad smell, just no smell at all.

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