early days post op

My husband had a total gastrectomy on the 8th of Jan 2012 - quickly followed on the 11th Jan a surgery as his bowel had risen and popped through his diaphram and fused with his lungs. This then caused pneumonia. He has been home since 21st of Jan. Things seemed ok for the first few days with a little and often approach to meals which were all quite easy to swallow and high calorie. In the last week Tony has been deliberated with extreme nausea and vomitting after eating and drinking. We saw the consultant and he got Tony in on Monday of this week for a stretch with a balloon to help. This seems to have had no impact at all and we are back to square one. Tony sleeps until 11am most days, then has say porridge (small portion) which he may eat 3-4 spoons. Then within 30 min goes very cold has abdominal pains feels or is sick and needs to sleep. This pattern continues all day even after a fortysips compact drink. As for any exercise - not a chance he struggles to move around the house to the bathroom etc. As any one else experienced similar? We appreciate its very early days but a tiny tiny improvement would be very welcome. I would say his total food intake for the day would fit on a small saucer - then of course this is vomitted back. I am ringing his consultant this morning and GP but would welcome any advice.

Thanks in advance

Jane.

16 Replies

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  • Hello Jane,

    I'm Jane too!

    I'm sorry to hear of your husbands problems. It sounds like an extreme form of dumping. A lot of people who've had gastric surgery suffer from it. and it is miserable, I spend a lot of time sleeping after dumping. How did he manage to eat in hospital? Was he any better there? Does he still have his feeding tube in?

    I find keeping absolutely still after eating helps a bit, but it's difficult because I usually need the loo.

    It is very early days yet for him, and progress will be so slow you'll hardly notice it at first but it will happen.

    You might find different foods work better, I can't eat anything with milk now, and I can't eat anything hot, everything has to be cool but not cold. You'll find what suits him.

    Good luck,

    Jane

  • Hi Jane, thanks for that - i think a longer road than we first thought. The GP is visiting today so and the consultants have sent a letter today for a Barium swallow and follow so hopefully we can rule out any complications.

    thanks again

    Jane.

  • Not having a stomach makes the food pass through the first part of the digestive system very rapidly. There is a factsheet about symptoms after a gastrectomy issued by CORE that you may find helpful.

    corecharity.org.uk/patients...

    It probably depends on exactly where the surgery has taken place as to whether his pylorus is still there and functioning. The pylorus is a valve that regulates the flow of food from the bottom of the stomach into the rest of the system, like a valve. Sometimes the nausea and vomiting can be a problem with this section of the system and that is why it is stretched. Sometimes anti-sickness medication helps (but metoclopramide can take 6 weeks to become fully effective).

    The transfer of fluids into the digestive system from the rest of the body can be quite dramatic and this can cause fatigue.

    So what you are describing does sound like 'dumping syndrome'.

    There is also the possibility of fungal infection (candidiasis) that the medical team may need to check out.

    There are times when all this makes you despair of being able to do the right thing! But it is within the range of problems that people have after a gastrectomy and he should be OK. It is almost as if his system needs to be trained into a new way of accepting food.

    Just in case, it might be worth making the porridge with soya milk as it might possibly be a question of lactose intolerance, perhaps?

    Try ringing the helpline on 0121 704 9860 for a recipe book.

    Try not to worry about the fatigue; the body has a way of making you rest when you need to. Maintaining nutrition intake is more important than quantity of food at this stage.

  • Thank you so much for your advice. I "removed" milk from Tonys foods yesterday and this seemed so much better.

    I will be ringing for the recipe book.

    Thanks again

    Jane.

  • If this helps, Tony won't be the first! The top bit of the stomach is called the fundus, and this is where lactase is produced. So if this bit of the stomach does not work, or is not there, you tend to get lactose intolerance.

    You can get lactose-free milk from some supermarkets (made by a company called Arla) and mix it with Slimfast. This will sound crazy, but Slimfast is designed for slimmers to give them some calories, but we think that it does help notwithstanding that losing weight is the last thing on your minds! It may well have the opposite effect for Tony! You can also additionally boost calories with Maxijul that can be prescribed by GPs.

    Fortisip has probably got a load of sugar in it.

    Sometimes getting the right thing to eat and drink can seem like turning all the traditional advice on its head! I think it is to do with avoiding sugar, carbohydrates that turn into sugar easily, and lactose.

    The Recipe Book does need revising to take all this into account.

  • Hi Jane,

    It is very early days!! I was managing a teaplate of food a day at this stage 1 mouthful and wait at least 30mins before the next. lost a lot of weight but slowly it got better, trying too hard put me back, it took ages for my system to accept food, I sipped thin soup or sometimes fresh juice but literally tiny sips. Now 3 years on doing fine but it was a very slow long process with tiny tiny steps.

    take care

    Lizzy

  • Morning Lizzy, thanks for your reply - I think I was expecting too much too soon!

    He seems so much better today and we are trying for a tiny amount every 2-3 hours which seemed to suite yesterday.

    Its great your 3 years on and gives us much needed hope.

    Jane. x

  • Hi Jane,

    This really does sound like Dumping Syndrome (I wish we could rename it, but can't think to what!). Firstly I would suggest changing to a lactose free fresh milk, it is now widely available in supermarkets.

    Dumping is caused by sugar hitting the system too quickly and lactose is a sugar. Lactase is an enzyme which breaks down the lactose and is mainly produced in the top half of the stomach. Most oesophagectomy patients and all gastrectomy patients have had that part of the stomach removed so lactase production is compromised.

    Also be careful with the fortysip drinks, they can contain a very high level of sugar, An alternative is the Slimfast milk shakes (no I haven't gone mad.) Being commercially produced they taste really good and if made up with fresh lactose free milk and a few spoons of Maxijul can contain up to 700 calories. These though are not a meal replacement, they are an addition to the patients diet.

    As an organisation we take this condition very seriously and are hoping to run a research project in May in which we hope to come up with the answers to Dumping Syndrome.

    Please call me for help with any aspect of this surgery on 0121 704 9860

    Take care, Dawn

  • Hello Jane,

    Oh how you brought back memories of what I went through in those early days, my husband used to mash up some potatoes with small bit of spread and give it to me on a saucer, then I went to a side plate, and so on until now I have a small breakfast plate...it is a slow process but he will get better a step at a time, I could hardly walk for weeks afterwards and my husband used to take me out in a wheelchair..as he did not drive, it did me so much good just to get out.

    Still get the dumping syndrome though and I think on here we have discussed that one day you can eat something and next day you cant..good luck and be patient. Bernadette

  • Hi Jane

    Yes the first month is very hard. I remember being so tired that I couldn't stay awake for long. Getting up and dressing was exhausting. In fact everything was exhausting. I was able to eat very small amounts and it was blended at first. I remember spaghetti bolognese (blended) was so good! The coldness and tiredness after eating does sound like dumping. But it did get better bit by bit. Sometimes it would get better then get a bit worse for a while. Slow process and I'm sure everyone has the exhaustion at first but recovery rates will be slightly different for everyone. Get him to eat anything that he fancies that tastes good. But If he can't eat without being sick then you should let them know.

    It is almost 11 years since the big op for me and now I eat everything but am careful. I hope your husband will be as lucky as I was.

    x

  • Thanks all for your very welcome advice.

    It seems forty sip may well be the demon at the minute - the GP advised to use daily ( I didn't on Thursday and we had a better day - then the GP sent fortysip creme yesterday which we tried and Bang back to sickness and feeling very poorly.

    I will try slimfast as the GP has also sent a perscription for maxijul.

    Thanks again, much appreciated

    Jane.x

  • Hi Jane I totally empathise with what u are going through - my husband Nielsen had his op Dec 2011 - not total removal of stomach but most of it- he has had ongoing problems ever since with food as most people do - had several stretches and also Botox injections none of which helped. The past two weeks it has got very much worse and he is losing weight fast has very little energy and finding it all very hard to deal with,as his wife and carer it is heartbreaking to watch. I contacted our surgeon who has been wonderful and we have an emergency appointment with him to tomorrow, I think we may be looking at more surgery as they had previously identified a problem with his pyloric valve which is feel is the cause of his current difficulties. This thread has been very useful for me and I am certainly going to try the lactose free and ski fast idea Dawn has suggested. I think when things are not going well as in our men's cases we have to keep shouting loud and clear to find them the help they are unable to muster themselves - I hope you get that help soon and will let you know what they come up with tomorrow. All the best.

    Lyn x

  • Thanks Lynn, hope all goes well for you both today x

    I have continued with the no milk and no sugar routine and seems to have improved things slightly even though still sick a couple of times.

    it has really made me think about the lack of information given by the hospital as to what to expect post op - according to the phyiso team Tony should be doing sit ups and crunchies now to strengthen his core muscles !! The dietician keeps telling me to offer Tony pork pie, chocolate eclairs and sausage rolls also to add as much cream and sugar as I can to food! I realise the info has to be general but if your not the sort of people to seek advice, and look for information you could be really making matters worse. Thank goodness for the OPA and macmillan sites as these have both proved invaluable to us.

    Jane.x

  • Dear Lyn

    Keep shouting! It's the price of love!

    Would also be worth getting iron B12 and other vitamin levels tested as the stomach lining produces the means by which iron is absorbed into the system.

  • Hi Alan - oh dont you worry - I am still shouting - I get a sense of "oh no not her again" when I ring or e.mail - do I care ?! No not a bit !! We have seen the surgeon this morning - he is not gong to bother with another swallow test - Nielsen was sick twice whilst we were there - and is going ahead in the next two weeks with his plan. He said he had just been to a conference and was speaking about Nielsen to a top surgeon from Stockholm and discussing this problem with the pylorus he apparentely told him that the way he deals with it is with stretches but using at least 30ml baloons - 20ml has been the biggest they used here - and has had great success with it, so they are going to have him in try the stretch if for any reason they cant or there are complications ie perforation (a small chance of it happening) they will go straight to pyloroplasty . He is also arranging a scan to be on the safe side ( I guess they are looking for recurrence/spread) but he felt no nodes today and did not seem unduly worried. We are relieved something is being done and soon - but he certainly couldnt go on like this for much longer. I did include B12 levels on the last bloods I did - were low but still within normal levels - but thank you for mentioning it.

    Jane - I hope you are hanging on in there and that husband is doing better today.

    Fondest wishes to all

    Lyn x

  • Apparently about half the surgeons in the UK make cuts in the pylorus at the time of the main surgery to help with the emptying of the stomach; the other half believe it is better to wait to see if a problem develops. There is logic in both schools of thought, but the surgeons who do not undertake the extra procedure at the time do regard it as a very straightforward thing to do afterwards. It does not feel straightforward when you are suffering, but it does mean that it is well within the range of things that can be sorted out!

    Hope it goes well.

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