My husband, Sid, was diagnosed in January this year and had his osophagectomy in May. I found this forum after searching for some advice on his problems post op and it is so comforting to know you are here.
He was doing great until last week, managing small amounts of food and supplementing his diet with complan in drinks etc. Last week he ran out of domperidone and the problems seemed to start then. The nurse said he could take metoclopramide which we had in the house from chemo. Now he is being sick every day and hasn't eaten anything since Tuesday although he is still being sick. He's in hospital now and they've done an endoscopy and found no problems there and are keeping him in to have a barium swallow. He still has his feeding tube so they are feeding him now through that.
Does this ring true for anyone else? As others have said, there seems to be a lot of post op guesswork going on ....
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calamityjayneuk
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Sorry to hear Sid is having such a hard time, this operation does not get much bigger than this. Many here will understand the problems he is having, and many foods he may have liked pre op may cause havoc now. His stomach was quite happy where it was before so has every right to protest. Two months post op is no time at all, I lost 6 stone, but trust me things will get better. The first six months are very hard and you must forget everything you thought you knew about eating. It was two years before I could even hold down milk, just eat a couple of mouthfuls of food when he feels the need, even if this is four o’clock in the morning. I survived on kids sweets and anything else I could keep down. I know it is hard not to eat what is on your plate as we have been taught not to waste; the secret is not to put too much on the plate as this can be off putting. Try to also keep him as calm as possible when eating and really chew the food well.
Steve
It is not unusual to have a crisis like this with feeding issues. It can be quite complex to sort things out.
It sounds like a mixture of a) not having the domperidone and/or b) nausea / sickness that might also be linked, and/or c) having food/drink that might be creating extra problems, perhaps because of the sugar / fat content. Sometimes there is an infection or bacteria that cause a problem. Obviously you will have to listen carefully to what they say at the hospital because they will do all the tests to establish what is happening.
A specialist Upper GI dietician can probably give you good advice, and it is always good advice to keep a food diary because that can give clues about what might have caused an upset.
The post surgery effects can indeed be complicated, and it can seem like guesswork.
One thing that people often find helpful is Slimfast. You will think that this is odd, because losing (more) weight is the last thing that you want, but it does give you the basic nutrition without causing some of the complications from other food. People's digestions are individual to a certain extent, but you should be able to get over this current hurdle like many others have.
Gastroenterologists are also helpful.
We do wish you both all the best with getting this sorted out.
Feeding somebody after this surgery, and keeping them well will seem like an absolute nightmare for you. No matter how hard you try to do the best for him, things sometimes conspire against you and it can be an enormous strain. But lots of people do come through it OK. If you ring 0121 704 9860 they will send you a recipe book that you might find helpful.
Its been 6 years since I had my op, and now and again it happens to me, mainly forgetting I have had the op.Do see your upper GI Nurse mine is fantastic in the past in helping Me to understand this op.it gets much Better as the years pass. Love and best wishes to you both, Tony
Hi - the same thing happened to me. I had my op last July and initially everything went well but was back in hospital a few weeks later for over a week with constant sickness. I had every test going, everything was clear, it just seemed my stomach was taking it's time to settle down . I felt sick constantly for weeks and my family were worried sick as I was eating so little. I tried every sickness tablet going. The good news is I slowly got better and was eating fairly well again by sept/oct. I went back to work part time to to start with in Jan, up to full time in April and never looked back. I still feel queasy occasionally and can't eat much bread or cakes ( helps keep the weight off though!) but on the whole loving food and life again.
Wishing you all the best and really hope Sid feels a bit better very soon,
Hi. It really does take time to get the food side sorted out. I am 2yrs down the line and still have the odd sickness problem with various foods. My main problem is that my eyes are bigger than my stomach! Hope things sort themselves out for you.
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