Total Stomach removal

[silversands]

following Over Lewis surgery, I had my whole stomach removed 2 years ago, since this I have lost all taste and smell, do not fancy any food, have to make myself eat, but I do crave sweet things like fudge etc, I do know the difference between sweet and savoury, but would not know what I was eating, and only eat small amounts. Does anyone else feel this way.

[Rayslife]

I suffer with similar problems.

Its been three years since my esophageal removal and I regularly loose my sense of taste! I kept asking my wife have they changed the ingredients to certain food products as they taste very bland? she looked at me a little puzzled answering "NO, I dont think so" Three or four days later I would get my taste back! very strange?

I now believe this is all to do with the vagus nerve! this is a major nerve connected to all major organs even the heart.

I can honestly say since I had my op I do not get hungry; EVER! I used to get very shaky and felt sick I always ended up sitting on the floor just in case I passed out; but this was only because of lack of food. I cant eats sweet stuff, sweets and the like, especially butter icing on cakes! I guess this is because of the fat content?

I have experienced Massive, Massive changes from within my body! I cant even drink alcohol as it makes me Very, Very ill! When I say alcohol I mean just half a glass full.

My whole life now is about What I eat, When I eat it and how much.

Because I am back to work now I will only have a "so called meal, about twice a week" When I get in from work its too late to eat a so called meal as I suffer with aspiration. You might be thinking to yourself you must eat at work???? Only two packets of crisps and a few ounces of cheese as any thing more will cause "PAIN and DISCOMFORT"

Sorry if this story seems long winded but its actually the short one.

I sincerely hope that you acquire improvements over time.

Good Luck.

Ray

[silversands in reply to Rayslife]

Thank you so much for your reply, so good for me to hear from you, it is good to know someone feels like me, and really strange that I also found out myself about the vagus nerve and asked my oncologist if my curve would have been cut during the op, he said yes, I have recently had more chemo as following a ct scan it looked like my cancer was coming back but following the chemo it looks like it has gone, have a friend who had it done 20 years ago and he is fine, just keep fingers crossed, I am female and do not drink so that is lucky for me. All the best. Vanessa.

[pauluk60 in reply to silversands]

Hi silver hope to keep up with you all I have similar problems to you all and trying to all this in bit like the food some some out so hope you don't mind paul

[pauluk60 in reply to Rayslife]

hi ray i am having troubles not as you still got everything at moment someone mention that nerve vagus i will try to keep up with you all you all dont think i have much help to offer but seem to be in similar position and we can talk cant we

[Rayslife in reply to pauluk60]

Yes no problem.

[tallbear in reply to Rayslife]

Hi Ray,

I know I shouldn't sneak in on someone else's question, hopefully they won't mind. But isn't it awful that so many of us seem to be in the same horrible situation. I'm not saying I regret having the operation or anything, but i'm three years on and I have the same problems as you. I used to love a few pints of real ale but now it makes me ill. My entire life revolves around 'What can he eat?' and like you I find that sitting on the floor seems a lot better than falling on it.

I agree with you 100% about the vagus nerve. Unfortunately I have to have more scans etc because I have now developed a problem with my lungs and can't seem to get enough breath in anymore, I think it's on the flattened lung. I feel doubly p'd off because I have lost so much weight and can't regain it.

I think food dumping is the curse of my life.

Good luck to all with this, and fingers crossed we all pick up a bit.

Richard

[Rayslife in reply to tallbear]

Hi Richard just a quick hello as I'm of to bed shortly, I have to say though I will be sitting up.......Not great for my neck.

I have just ticked another of my check boxes as I also find it hard to breath at times, I think it is related to this every day cough I have, and the collapsing of the right lung during the op.

I have so many niggles as I call them I really cant believe it? felt so, so much better before the op?

Never mind still here thankfully.

I dont have a problem with you sneaking in as you put it, its all about acquiring more information about this disease and how to cope with it?

Good luck yourself.

Ray

[pauluk60 in reply to tallbear]

hi tallibear rayslife evans3842 and all others with same or similar probs well lads you are all heroes to me going through so much and coping and if you could help me as i seem to fit into catergory well here whats happening to me sick daily any solds (now mush all) expelled water/drinks makes matters worse just come away from burning throat/stomach meds r ppis gavison and anti sickness and any concoction i hear may work ice latest bot it does cool the raging inferno inside but this as gone to long 3/4yrsand still in same boat going nowhere i have had endoscopy 3 times all clear with little or feedback bar mention of spasms and last one stomach still had food in their put it down to diabetes some nerve not sure i have asked for it to be treated as stomach ulcer one consultant as said he may do?????? my doc snapped because of the amount of anti bs used well boys and girls pick the bones out of that please and c what you all think any advice welcome we will beat it together if poss ps i dont feel to bad and not loosing weight

[tallbear in reply to pauluk60]

Hello there,

Sorry to hear about your continuing problems. You'll have to correct me if I have got it wrong but I take it you haven't had any operation yet and you sound like you have had ongoing reflux type problems for a long time.

The first thing I would consider is diet.

Does the burning appear after any particular food?

How much time passes after eating before your problem starts.

Start a diet and reflux diary and write down what you are eating during that day and if any of those things didn't cause you a problem.

I did this over quite a long period of time to try to eliminate those foods which caused problems, and concentrate on the foods that didn't cause problems.

Mash all the food you eat and chew it right down so that it's like a liquid when you swallow it.

Reduce the amount of food you eat in any one sitting to child size portions and eat more frequently.

Don't take any drinks with meals and wait at least fifteen minutes after eating before you drink.

Try for a week at a time cutting out particular foods, i.e one week with no dairy produce at all not even milk.

Try one week with no bread, pastry or flour type products including biscuits.

Try one week with no cereals at all including pasta and crackers etc.

Try one week with no animal products ( Be vegetarian).

Try one week without coffee or anything with caffeine in it.

Try one week with no sweets, chocolate or anything sugary.

Try one week with no potatoes and reduced intake of vegetables.

Try one week with absolutely nothing spicy.

When you cut out dairy and at other times try to drink different types of tea.

I drink green tea all of the time now and I also find ginger tea very good for soothing my digestion system (you have to bear in mind that we no longer have a stomach in the normal sense because it's been turned into a tube to replace the oesophagus).

And finally buy antacid tablets which you can chew they are quite cheap and you can also try Ranitidine an over the counter a pound in superdrug.

And don't forget if you are serious about trying to beat this you have to have a strong resolve and not duck out after a couple of days to have something that is off the list for that week.

Don't smoke or vape.....

Good luck and let us know how you get on

Kind regards

Richard (Tallbear)

[pauluk60 in reply to tallbear]

tallbear i cant thank you enough for your help will try all you said BUT AFTER YESTERDAYS POST I HAD ENOUGH AND I SWALLOWED 4 OMNEPROZOLE AFTER 15/20 MINUTES STOMACH STARTED TO SETTLE AND I FELT HUNGARY so in at deep end tried piece of a mini pizza and guess what it went down couple of dodgy moments but went down what a feeling even wife was astounded she usally there with sick bucket towels etc etc i have done same again whata relief so now what next i have quite afew tabs but what will doc say????????

[Golf1910]

I sympathise with you and Rayslife and went through same things. Had total gastrectomy 6.5 years ago now and had the same issues with taste of food, what I used to like I didn't and lost a lot of weight in hospital (there 7 weeks as had a leak on the join and another op needed) and another 2 stone over a couple of years at home, presently around 9 stone 3 used to be 15.5 stone but happy with this as long as stay that way. I am now 80 and have always had issues with swallowing since the ops, food and fluids are very painful and I regurgitate the first couple of mouthfuls quite a lot so don't eat out that often. It is strange how things taste differently and it seems to change all the time and agree with the comment from Rayslife about the vegus nerve that in my case I understood had to be severed and the body then readjusts amazingly so. I seem to go through phases of not wanting to eat, struggling to eat, to at other times eating all the time snacking on savory biscuits is my present passion and strangely enough I can eat crisps and biscuits without any issues at all when you think that would catch in the oesophagus?. It is just a case of going along with things and seeing what is best for you, I can now drink a glass of wine okay but couldn't look at it for a few years and certainly cant drink a pint anymore. The shakes that Rayslife mentions sounds like dumping syndrome when you need sugar, I carry dextro tablets in case. Hope some of that helps can only say that I am still here albeit with the issues that I have to manage and one gets used to it.

Good luck to both of you and hope things improve going forward

Rob

[Rayslife in reply to Golf1910]

Thanks for replying Rob.

It does seem like there are so many of us suffering with the same problems and symptoms.

When reading people posts Its a bit like a tick box! I'm saying to myself "Got that, and that and some of that too" its certainly not funny as you know, but, you certainly need a sense of humour to continue in our plagued life?

I firmly believe you have to be very positive to actually continue in life and not develop that so called "Pity me life"

To be honest with you, people may ask you how you are doing, but, they dont want to listen to you winging about it most of the time.

I had my op when I was 59 I am now 62, the biggest problem like yourself is swallowing? Bread, is certainly the biggest culprit! many a time I thought this is my last day on this planet as I would be Choking or gagging so much. Its hard to describe but its as if someone squeezes your throat tightly just as you swallow. I'm talking streaming eyes and making strange gasping noises, it can be a frightening experience. I actually lost my balance once bashing my head on the toilet bowl as I became so light headed.The only thing is after one of these episodes I cant eat for the rest of the day as straining my throat seems to make it ultra sensitive.

Ah yes crisps!.......just laughing to myself here as this has become my"MAIN food" intake as I find I can break them down to nothing.

Anyhow enough said as These storeys do go on, and on.

Look after yourself.

Ray

[Golf1910 in reply to Rayslife]

Thanks Ray yes we all suffer with the same issues I have had many endoscopies that show ulcerated oesophagus that causes a lot of pain eating and drinking and one can only try different things to see if helps but generally they don’t. We just get on with it my upper GI nurse says You are sitting there aren’t you and whilst a bit harsh she is right. The one that gets me is everyone says how well I look and as we know looks can be deceiving. The good thing is I go to our support meetings 3 x year and there are people there who still around 11 even 15 years after their operations so keep positive

Rob

[silversands in reply to Golf1910]

Hi Rob, I was exactly the same as you, came out of hospital had a leak went back in for another 7 weeks came out with a drain, things got worse and had to go to London to a thematic surgeon who then operated on me twice, he saved my life and will be forever grateful to him, if I ever have a problem it is him I get in touch with. Everyone tells me how good I look, but life is strange I was very overweight before and have lost 7 stone, but have managed to keep my weight steady, although I have no appetite I eat chocolate , have cream and butter, I am just so grateful to be alive, I am 74 years young!!! take care lovely to hear from you.

[Golf1910 in reply to silversands]

I have been on a full fat diet once I started eating again after the feeding tube had gone, I kept around 10 stone 10.3 but over past year dropped to 9 stone and finding it difficult to put it back on at present. Gets expensive though think I said I Was 15.5 stone that's wrong I was about 14.5 stone lost over 2 stone in hospital and then continued to lose but steadied out a couple of years ago, went from XL to L to M now Small so became difficult as had no clothes, didn't want to buy as wasn't sure what weight I would be, but sticking with Small now. I was way over weight so happy about not putting it all back on. Amazing how the body can adjust to no stomach and still not sure how it works, suffer with Bile reflux though that can be pretty bad. Have to take Creon tablets as my pancreas doesn't function producing the enzymes to digest food. Don't know if anyone else has to have these I was told take 1 tablet for every 10g of fat and have an app. on my phone that tells me the fat content of foods. Must say I am not the greatest at taking what I should so that could be affecting me of course.

Anyway good to hear from you all and keep positive, age is but a number sure we all the same about 30 in thoughts but the body doesn't understand how to coordinate the 2.