after eating I regularly feel uncomfortable & need to relieve it by bringing up a white substance, there is no burning, so is this acid?

[puckster]

I am taking esomeprazole but don't think it really works. I have tried ranitidine & omeprazole which didn't work either. I have been avoiding foods like tomatoes, onion, garlic, caffeine but I still find that I get this uncomfortable feeling instantly when I eat something that doesn't agree with me. The only way to relieve it is to bring it up but just lately my food is also coming back up. Sometimes i feel uncomfortable for hours and can't eat or drink anything. I had a total gastrectomy 14 months ago following stomach cancer & need to eat little & often & high calorie foods to keep my weight stable which is really difficult. I am also vegetarian so find it really difficult.

[sensus]

I am 5 years post Ivor and in the early days I use to "bring up" this white foam. I don't think its anything to worry about. I am constantly still bringing up food especially before going to bed and am afraid its something I've just accepted as part of the cure. Rather bring up food than acid!

[puckster in reply to sensus]

Thank you Sensus.

Are you taking any medication for it and did certain foods cause the white foam? I am not sure if this is classed as acid reflux or not because I don't get any burning sensation?

It does make eating unpleasurable because I never know when it will happen although it is very regular, around 4 times a week & usually tea time as opposed to breakfast or lunch. One day I can be fine with a certain food & the next time I have that food it can cause the white foam. I guess it is just something that I will have to live with but it does make it very hard to keep my weight on & I only weigh. 54 kg & I am 5'8

[Granta in reply to puckster]

Morning Puckster

As you do not have a stomach you will not experience acid reflux and therefore the medicines you mention, which inhibit production of acid in the stomach, would have no effect.

Bile reflux is usually the problem, but this is usually accompanied by the familiar burning sensation. I have used Gaviscon Advance , not for its anti acid properties but as a 'blanket'

to smother the bile, and also have had some success with Sulcraphate, which although usually used for ulcer protection, lines the gut and 'binds' the bile.

I am 3 years post op total gastrectomy, and I am suppose am lucky in that I eat what I like , and as long as can keep the bile reasonably under control, do not have too many problems, other than of course a bit of discomfort if I do eat too much or too quickly.

[carolg1 in reply to Granta]

Hi grants you seem quite knowledgeable on this subject, I’ve been diagnosed with jackhammer esophogus, I have severe copd, but the most disabilitating thing is the pain and horrid vomiting of thick white froth mucus I can feel it building up the pressure in my breathing is terrible, I’m trying to find a way of getting things through my system to avoid or lessen these horrible episodes, thanks x

[sensus in reply to puckster]

I take a 20mg omeprazole tablets a day and Gaviscon as required. The white foam just seemed to happen but is very rare now. Acid reflux is is horrible especially when it wakes you up from a deep sleep and there is nothing you can do to relieve the discomfort; just wait for the effects to abate which can take up to an hour. I eat lots of cake and biscuits and my weight returned to pre op levels! So we are fortunate in this one regard! No worry about putting on too much weight! I think the Ivor Lewis operation for cancer of the esophagus / stomach is an imperfect one and we have to basically still be happy to be alive!

[carolg1 in reply to puckster]

Hi I have very severe copd and jackhammer esophogus, my symptoms are similar everything gets stuck in the gullet I dread if I ever get constipated, I’ve been like this over 3+ years living nightmare hope someone comes along with a miracle xxx

[Hidden]

If it happens with some food but not others, then you probably have your answer - you simply have to avoid them.

If your 'stomach' is clearing OK into the rest of your system ie not blocking back, and if it tastes as if it might be 'acid' then it might indeed be bile, so a different medication would be required.

[Granta in reply to Hidden]

Hi Alan

Puckster does not have a stomach, hence my post.

[Hidden in reply to Granta]

Some people will still retain their pyloric sphincter, the valve at the very bottom of the 'stomach', and this can affect whether the food clear or not. All depends on the details of the surgery.

[puckster]

As I have no stomach, is acid still produced to break down the food & does this sound like acid reflux?

After researching acid reflux, it does say that certain foods, spices, alcohol & caffeine can cause it & I avoid all of these things but U still have trouble with feeling uncomfortable & having to relieve the build up of white froth in my oesophagus...i can feel it gradually building up to a point where I need relief.

[Granta in reply to puckster]

Hi Puckster

The answer is No and No.

You have no stomach, hence no acid being produced or any acid reflux. So no point in researching it. Refer to my previous post. Also if you feel uncomfortable after eating , another old fashioned remedy that actually works is gripe water.

[handy]

4 years post op and I am still getting very bad bile come up having tried all the medication that has been advised. The only thing that works for me is to have regular dilations as I seem to get some food build up which will not pass through so I have been told that this can cause the bile build up.

[puckster]

Thank you all for tour responses I have an appointment at the hospital at the end of February for a check up so I will ask the doctors what they suggest. In the meantime I am going to take a sample to the doctors for analysis & ask them to prescribe some Gaviscon. I had a cheesy mushroom lasagne with 2 carrot batons, red cabbage & sprouts for my tea tonight & that was uncomfortable after a few mouthfuls & didn't stay down

I find it so hard to take in enough calories to get me through each day. My weight drops by a 0.5-1 kg a day when I have trouble keeping my food down.

[Hidden in reply to puckster]

I think it would be worth ringing the specialist nurse and explaining your symptoms - they may bring your appointment forward.

[gutlesswonder]

Hello Puckster

I am afraid 'Granta' is not correct.

If you had the Ivor Lewis procedure or any variant thereof ; then what was your original stomach has been re-engineered to form the replacement pseudo-esophagus tube.

In order to bridge the approx 10 inches of oesophagus that will have been removed the uninfected tissue of the

bagpipe shaped stomach is cut up,trimmed and sewn into a structure resembling the inner tube of a bicycle tyre.

This is pulled up into the upper chest/throat area and joined to the remaining stump of the amputated gullet.

Even though some of the connections of the vagus nerve will have been unavoidably severed the formerly stomach tissue will continue to produce some hydrochloric acid.The amount cannot be predicted as it depends upon the aforesaid nerve disconnections and also which areas of stomach tissue the surgeon utilized.

Have you been assessed for vitamin B deficiency?

If you are not deficient in this then it is likely that you have considerable residual acid-producing capability as the cells which secrete acid coexist with the secretion of the binding factor which vitamin B requires.

Whilst acid and bile both contribute to the discomfort and dangers of reflux on balance some remaining acid may be a good thing in that it sterilizes bacteria, enhances digestion and, indirectly avoids some vitamin deficiency.

As a complete guess I surmise that some of your problems may be down to being vegetarian. Humans evolved to be omnivores.

Prior to surgery you could accommodate the 'restricted' diet ; afterwards ? It's a big ask.

Gas production is a particular problem for us folk since, minus the three natural control valves ,every bubble acts as a piston lifting chyme up into the throat .

[puckster in reply to gutlesswonder]

Thank you gutlesswonder for your detailed response. I have not been tested specifically for vitamin b but I did have a blood test last week which came back normal. I do have vitamin b12 injections every 12 weeks as I have no stomach & multi vitamins daily. I am not sure if vegetarianism is my problem, U just think it may be a side effect of all the things my body has been through. I am just grateful to be alive & if this is all U have to put up with then I will count myself very lucky. It is comforting to find this website & so many lovely people who unfortunately have their own problems.

[puckster in reply to gutlesswonder]

Sorry when I pressed reply, report came up & I could not clear it from my phone. I do not want to report your response, it was very informative

[puckster]

I have spoken with the nurse specialist today who in turn spoke to my surgeon. They have told me to stop the esomeprazole as they di not believe it to be acid reflux or bile but maybe something mechanical due to 2 lots is surgery, chemo & radiotherapy. They have referred me for a barium swallow which I will hopefully have the results of before my hospital appointment at the end of February.