Oesophageal Patients Association
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NO STOMACH,NO TUNE FEED

HELLO ,

ESOPHAGEAL CANCER EITH TOTAL GASTRECTOMY 4 YEARS AGO. WEIGHT LOSS,ESOPHOGITIS, & PAIN DAILY

EVEN WATER HURTS WHEN IT GOES DOWN..

I NEED HELP.

ANY SUGGESTIONS?

3 Replies
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Hi 10 years ago I had stage 4 tumor on the join of the two had the lower part of the esophagus, gastrectomy and some lymph nodes. (I was 48)

Well done!!!! 4 years I know how hard it is and every year is a mile stone.

Like you I lost weight I am under 7 stone now I was in pain too, periodically had scares, tests. I also can not drink water, juice, fizzy, squash. Have over active bowel food goes straight through. (accidents at times) Few other things too.

Ring (I could) the upper G.I unit speak to one of the specialists nurses get appointment see consultant. They will help!!!

It does get easier learning to live with new crap body I have never had a good day one thing and another Dam not going to let it beat me after what I went through.

GOOD LUCK! Early days 6 years time feel the same. x

I

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I am three years and still suffer withe constant sore throat and have found no antidote. I get stomach cramps. This seem to be improving. They are not as debilitating but more of a background ache.

All I can suggest apart from speaking to your GI Nurses/Doctors or your Consultant is a dietician.

I am a vegetarian (not vegan) and did find some relief (excuse the pun) by not eating after 19:00 at night and being very careful to only ever eat tiny amounts during the day. Volume (for me) is a big part of the issue and I can easily prove that, by eating just a forkful more than I should.

Sorry I have no cures, but I think it is likely that what you have is the "norm" but may well be helped by careful diet and portion control.

Good luck.

Bruce

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I am assuming that you have no stomach but do have a fair amount of your oesophagus in place, and that the fact that drinking water causes pain probably means that your oesophagus is inflamed. Oesophagitis would normally be caused stomach acid, but as you are unlikely to have any or much of this acid any more, it makes me wonder whether it is bile reflux that is causing inflammation, so I suggest that you tell the specialist nurse and ask for an investigation and think about medication (perhaps cholestyramine?) to reduce the inflammation.

This is entirely speculation on my part.

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