Food is a bad four lettered word!

Hi. My husband is 7 months post op for an extended total gastrectomy after cancer was found in the cardia. I wouldn't say he sailed through everything, but he tolerated the ECX pre and post op quite well and recovered from the surgery very quickly. That is apart from one hiccough when the district nurse took his staples out too early and half his op scar fell open 30 minutes later - blue light to A&E!

The problem, and I will say our problem, is food and eating or more truthfully NOT eating. He has lost over 4 stone since the op and the hospital are very concerned about this. I can understand that he will not have any appetite (he says he could probably go a week without food and he wouldn't feel hungry), however, he obviously needs to eat and this has become a major issue. I'm at one end straining my brain to come up with thoughts and ideas for foods that are calorific yet easy to digest and don't cause him to vomit, be in pain, have galloping diarrhoea or yellow floating stools and/or the most foul smelling gas one could possibly imagine. He is at the other end, mourning his loss of appetite and ability to eat all the foods he loved and actually hating food and eating, or sitting down to a family meal after getting his mind around it only to find he can't eat more than a few mouthfuls.

Food is becoming a dirty word in our household he hates me mentioning it and I stress over what to do and what to feed him. I inwardly wince every time I asked him what, when and how much and has he had any Ensures. I've listened and followed the dieticians' advice and guidelines to no avail and to be honest find that quite confusing. If he eats lots of carbs then surely this is causing a blood glucose problem? I've tried more complex carbs but then he has a problem getting them down without feeling bloated and uncomfortable. If he eats too much fat or has fortified milk (fresh whole milk with dried whole milk added) then this must be causing an issue with fat digestion.

I am now extremely worried because he has started to feel dizzy and has actually fainted twice in the last couple of weeks, the last time resulting in a very swollen and black eye and grazed knee and hands. He also reported a bright spark in his head as it hit the ground. This is not good on any level and now I've gone from being very worried and concerned the extremely worried and concerned.

Any ideas or suggestions would be gratefully appreciated.

13 Replies

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  • Hi l can only give my experience ,but it may help and I'm sure others will help best they can with there own experiences I'm am 8+ half years post op Even now never feel hungry,but know​ i have to eat,but only small meals l never put weight on,lost 4+half stone after op,and they were very concerned,but seemed to get to to weight and stabilise,and even now i am still at that weight,no matter what.Little and often is the best way,my family are used to it now .When i did start to eat at the beginning,(eventually) i lived on mashed potato, with gravy to help it slid down or home made thin soup ,as time went on i advanced to yougarts, custard and anything that would just slid down,i was still sick at times, infact still am if i have just a little to much,much more adventurous now,but have to be careful and some food i just cant eat.Still have dizzy spells been very close to blacking out,but not very often now .Best advice baby steps at a time and with the food too It will take time i never thought I would get there but almost 9 years down the line and I'm here to tell my tale, although it's a bumpy ride , even now , life is worth it Wishing you all the best and take it slowly

  • Thank you Mayan. I'm guessing there really is no easy answer. Also don't think it helps that hubby always wants to run before he can walk. He has eaten or tried to eat near on most of what he used to eat and new stuff too with varying degrees of success.

    We did, between us, work out the cut off point for how much to eat at one time. I would listen to hubby's reactions to food and tell him to stop and he learned alongside, that this did help with not being sick directly after. We thought we had it cracked! Ha! Then a week or so later it all seems to go awry again.

    What we find really frustrating is there seems no rhyme or pattern to anything. One day he can eat a particular food and another day it won't go down, or comes back up, or shoots through.

    We try to be as philosophical as possible, but the side effects are hard to live with - more than anything the fainting which can cause so much physical damage.

    It's also very hard to get the head around the frail appearance the loss of weight has caused.

    I'm wondering if a warm (not hot) relaxing holiday might help. Perhaps without the stresses of food prep etc and just being able to turn up for a choice of food might help?

    Two problems there. The children don't think it would be prudent to go away whilst hubby is so 'unstable' food wise and with this new addition of fainting and medical insurance.

    Thought/ideas on all aspects would be kindly appreciated.

  • Hi Herindoors Mayan here again Afraid to say as you said,no rhyme or reason and their never will be,l have often asked my specialist why is it,even now what works one day doesn't another,she always says they really don't know the answer to that one Regarding a holiday,i personally didn't want to go away until l felt able to enjoy and appreciate it .One of my district nurses said don't think of now, look forward to later in the year,when the weather is better and you feel better not today or tomorrow,but the future It will and does get better.I know it's hard for you as much as your husband,as my husband said he felt helpless . Don't know what area you live,but there is usually a regular meeting to go to for patients and carer to listen, talk and discuss problems,i still go and am still discovering, helping and learning . There is usually nurses,a speaker, sometimes one of the surgeons But please remember,tell hubby don't run don't walk but baby steps only at the moment

  • I'm five years post op' and I still have random bouts of 'dumping' for no obvious reason. I may have a couple of months without any problem whatsoever and then out of the blue there'll be three or four days when 'it's back again'! It's usually just a morning thing but there's no regular pattern to it. I do sympathise with the food dilemma, I'm one of the fortunate ones 'now' but I remember only too well the problem with food and vomiting - a truly awful time. Looking back - cheese and a few crackers, fairly bland soups or even bovril with a little dry bread, oh and egg and soldiers or scrambled eggs with a little bread and butter went down well - and usually stayed down. Anything too sweet or too fatty seemed to cause the most problems - although 'too much' of anything was asking for trouble. Half a slice of bread spread lightly with butter and a soft boiled or scrambled egg might not look much like a meal but if it can be enjoyed and stay put, it's as good as a feast after weeks of sickness. A rich tea biscuit for 'pudding' when I fancied something sweet was also a pretty safe bet, as long as I didn't have it immediately after my 'first course'. I think, to begin with - very little, eaten very slowly with hardly any fat and no very sweet things gradually introduced my new plumbing to food again. I'm very lucky, as I can eat practically anything now (in ladylike portions) with the exception of anything that's too spicy.

    Quite possibly a coincidence but my sickness stopped completely once my feeding tube was removed. Two of the stitches had come out and when they were being replaced the tube was accidentally pierced and my consultant decided to remove it to 'see how I got on'. I got on fine - as long as I didn't try to eat too much. Bearing in mind the effect that overly sweet things can still have on me, I can't help wondering if it was the Ensure and Fortify liquid feeds rather than the tube itself that was part of the problem - they're so excessively sweet.

    Wishing you both well, do hope things improve for you both very soon.

  • Hi

    This is not uncommon (the not eating). After the surgery pretty much everything is messed up and it does start to mess with your brain. I think that for most people, food is a routine, a clock, something to look forward to. For us, it is often a pain, uncomfortable and the start of hours of "self inflicted" discomfort.

    Trying to find foods that he can tolerate is the King here.

    Once he can get stuff down that does not make him too unwell, the desire to actually eat again will start to return. I am 2.5 years post op, and I still do not really look forward to food. It is something I have to have and not really something that I want,

    The "fainting" may well be Reactive Hypoglycemia!! You need to get that checked by mentioning it to your consultant. It is (some say) tied in with the inevitable "dumping syndrome" (I remain unconvinced on that). It is caused by our new plumbings inability to digest sugars. This causes a very sharp rise in blood glucose levels, then a corresponding crash in levels. The crash will cause you to become unconscious - wherever you are and at any time. This includes driving a car.

    The trigger is invariably sugars (with me it is any chocolate or cakes). It is manageable (not curable) I would suggest that you give "severe hypoglycemia" a Google and see if you can recognise the signs.

    Like dumping syndrome the fall is us usually about 1.5 hours after the trigger event = Sugar Intake.

    I now wear a blood glucose monitor - Having fractured my spine in two places after I collapsed in the middle of the supermarket. It can be fatal and must be taken seriously. It is made by the fact that the one food we usually can eat!!!! is sugary stuff, sweets, biscuits etc. So we eat those, then pass out.

    Good luck

    Bruce

  • Sorry to hear you are both suffering, I say that as I do understand that although it was me that had my op 7 years ago it was both of us that suffered . I lost about 3.5 stone and am now a steady 12 (6ft) but the road is never easy, we have disagreements over food all the time, I do not get hungry at all and don't think I ever will but know I need to eat regularly. I try to eat as close to normal as possible very small portions and every few hours still even through the night as if I don't my weight does not maintain. Strangely dairy doesn't normally cause me a problem, chocolate is an every day treat as it slides down easy, I only drink milk as coffee and tea cause me acid, that took me 2 years to figure out ! I often feel that the preparation of meals is not worth the hassle but my wife regularly makes up a dozen or so very small meals when she makes food and we freeze it, portions the size of a remote control are all I can eat or a single pice of bread as a sandwich . I find portion control is essential as if I eat too much I feel lousy, if my wife's makes me a sandwich it comes on a plate with a plastic bag over it as I know I will eat it in 2 or even 3 sessions over a couple of hours. I have 'night food' beside the bed and when I wake I eat something and drink strawberry milk. We are all different and I cannot give advice on what will work for you, merely what works for me. I would say don't dismiss any food, I can now eat some stuff I couldn't eat before my op and it is all trial and error. Good luck to you both, it's not an easy road but the alternative route given 7 years ago still does not appeal. Life is good. Best regards. Ray

  • Herindoors,

    I had my op last August then book ended with more chemo whic they combined with radio. The nausea & association of taking medicine with being sick really messed with me. Smells also put me off eating & I could love something one day & hate it the next so I went to a hypnotherapist. It did not work over night but we took one issue at a time & even though I do not feel hungry any more (total stomach removed) I do occasionally fancy food & enjoy it, sadly more often then not I am now eating just to maintain my weight of 9 1/2 stone, I lost 4 1/2 stone in 2 months, was exhausted & fainted regularly.

    But I am a lot better. I have more energy, I do not get as many dizzy spells & have not fainted since January.

    I find eating protein bars helps, I nibble on them during meal times as I cannot handle 6 small meals & the nutrient drinks YUK!

    I recommend a hypnotherapist to help change his attitude to food, also maybe would like to go on a cookery class, I plan to, my taste buds have changed & I need more flavoursome food, bland is boring. Thought a cookery lesson would help. Must get this booked!

    Hope things get better, from reading other posts, things do improve but if you have difficulty then I recommend speaking to your medical team, dietician, see if they have any more ideas.

    Really hope things improve. Just take each day as it comes.

    Z

    Xx

  • HI

    This is a familiar story .... everything you describe is familiar. The relationship with food has to change - it is one of survival not pleasure. The vagus nerve is cut and you feel no appetite and this will never change - he will have to accept it - it will never grow back. Tell your husband we all go through this and as you learn to eat and get used to it slowly your stomach and digestive system adapt (small regular meals) and the foul stools and diarrheoa die down - it has took 6 months before I had to rush to the loo 6 times even before I got up to just twice. I carry emergency loperamide (Fast acting Immodium available over the counter) to go out and have slowly adjusted. I couldn't afford to lose 1 pound and so this forced me to eat as I was already so thin from chemo and chemo radiotherapy (I started slim so ended up skinny). Also I have a 12 year old which spurred me on.

    The reality is you enjoy the feeling of food in your mouth (I hate swallowing as I had a very high join and have lost all my peristaltic movement and I can feel everything I swallow - it feels like something is stuck in my throat) but I am just accepting it as I have no choice. I eat to live not live to eat!

    Please tell your husband he is not alone, we all go through it but he has to grieve for his relationship with food and then move on as it will never be the same. Tell him it WILL get better and how much you want him not to give up but take on this new challenge in his life - I know it is a fundamental pleasure in life but it is the price one pays for the surgery 'cure'!

    My thoughts are with you both ...

  • Hi i am 13 months post op it has taken alongtime to adjust to eating too. At first it was a few spoonfuls of food on a small plate or bowl. 6 meals a day being protein and carbs, fruit like bananas or fruit smoothies. I had a lot of mash potato with soft meat mixed in and very few veg. Making soups to get my veg intake liquidised in a blender. I couldn't tolerate yoguart, ice cream and a lot of dairy. Cheese was ok. It was easier to eat toast than bread. Some foods reminded me of chemo. I couldn't eat some of these at first, they made me heave, but i can now. Yes your relationship with food is different. Try to only sip a drink with food as this can cause dumping. It is trial and error. Going out for meals is difficult but ordering children's portion or a starter is ok. People have to realise this is the new you!! Keep a banana or digestive biscuit with you to eat or some people have dextrose tablets for that faint feeling. Because you don't feel hungry your body tells you in a different way.

    It is hard for loved ones,

    Good Luck

    Debbie

  • So sorry to hear that your husband is having a very difficult time..i'm 9 years post op total gastrectomy..i lost 4 stone in weight quite quickly but given time it will stabalise especially when you find the foods that suit your hubby best..fortunetly i have never lost my appetite and have been told by my surgeon it's very unusual as most ppl do lose their appetite..i eat little and often, i do not eat much dairy as it causes severe reflux and i end up being physically sick and by tht i mean i still have small amount of milk in my tea and a tiny amount on cereals etc etc..try to eat high calorie foods to start my day i have a small cup of tea with 2/3 biscuits for dunking its easy to swallow leave 1/2 hour and have 1/2 slice of toast with scrap on scrap off butter with 1/2 small banana..every 1/2 have something else fresh fruit with a slice of buttered bread..to be honest its a learing curb and everyone is different..it's not going to be easy but keep going it will be worth it in the end i still get dumping syndrome and hypo attacks i think that stays with us for the rest of our lives and can be controlled with meds..be careful not to eat too much in one go as it can make you feel really quite ill..if there is any advice i can help you with please just ask..i wish your hubby well for the future..Suzy..

  • Hi Herlndoors,

    I had total gastractomy 2.5 years ago. Saw 3 diaticians - 90% of their combined advices were bad.

    Between two endocrinologists and gastroenterologist/nutritionist I got this:

    1. Stop eating sugar, because insulin shuts it down and that might be the reason your husband fainted...or bc he didn't eat for a long time

    (Read about dumping syndrome)

    2. Reduce carbs to min.

    3. If he eats smth sweet (like an apple) or carbs - take it together with protein.

    4. Eat VERY small portions and better in combination in same proportions of carbs, protein and fat.

    5. Eat every 2hours and don't wait for appetite- will not happen.

    Maybe baby food will help in the beginning and puréed food IN SMALL BUT FRIEQUENT PORTIONS

    Protein shakes are too sweet, even the ones with less sugar.....at least for me. Everyone is different.

    It will take time to get adjusted to a new digestive system. It will never be the same. I don't get out of the house without food bc I know I will have to eat in a couple of house....otherwise insulin level drops.

    I hope this will help a little.

    Alisa2008

  • One of then reasons we normally feel hunger is because of ghrelin, which is generated in the top part of the stomach, which your husband no longer has, so he will always have to 'eat by the clock' rather than responding to hunger and appetite. Which is a great loss of quality of life.

    I know that nutritionists worry about weight, and see weight gain / maintenance as a health issue but you have to be very careful about following nutrition advice if the nutritionist is not an Upper GI specialist. I think you are right in relation to carbohydrates and it does sound as if your husband is suffering from insulin spikes; these can cause blackouts.

    The yellow floating stools sounds like steattorhoea, which is when you have trouble digesting fats.

    It is feasible that there may be a more complicated reason for the diarrhoea, like SIBO (small intestine bacterial overgrowth) which might require antibiotics.

    I entirely sympathise with this problem. You are probably at your wits' end.

    Firstly I suggest that you forget about the weight issue for the time being. Taking in nutrition is important, but trying to eat to regain some form of weight target will be frustrating and will drive you both mad, because it might be unachievable. It might just be that he will lapse into a new normal weight. Losing four stones sounds quite a lot, but there have been quite a few people who have lost more than this during this kind of period. There is a survey in the old polls on this site. I think I would try and throw away the scales for a while.

    Second, do follow that advice about eating 'little and often', even to the extent of simply 'grazing' very frequently rather than having proper meals for a while.

    Third try giving up milk and try soya or even rice milk for a while.

    Fourth, choose a diet as if he were diabetic.

    5 I think a glucose meter may well show some very significant spikes, and it would be worth monitoring insulin levels for a while.

    6 Have a check on mineral and vitamin levels

    7 Try and sample some alternatives to Ensure if he does not like the taste. There are alternatives and this should maintain reasonable nutrition levels.

    8 If, after a little while things are not getting any better, he may need an appointment with a gastroenterologist especially if there is a chronic diarrhoea problem that does not respond to loperamide etc, and the floating yellow stools may need medication anyway.

    Now for the difficult bit. There is inevitably a grief about loss of ability to eat all those things he used to love and in the quantities that used to be a joy. But unless he really changes the way he eats so that it is consistent with his new digestive system, things will get worse and worse. He won't thank you for telling him that, but there are plenty of things to try out in an aim to improve matters first.

  • Thank you all so very much for your replies. Please forgive me if I don't reply to you each individually by name - been a day from hell and I'm sporting a lovely migraine.

    I have to agree with you regarding sugar. I'm diabetic and so have been 'savagely' stabbing hubby (his words) and testing his blood glucose when he comes over faint. Some times I've found his blood glucose to be very low indication he could be suffering from hypoglycaemia symptons. I think I need to do a more precise testing to accurately work out if this is part of the cause and indeed what foods may be causing it - apart from the obvious foods with high glucose.

    I agree with the fat issue causing the yellow floating stools - I had done a bit of research and found that one out.

    I also have to agree with diaticians not actually being a lot of help at times. They do seem to cover a wide spectrum of health issues and not really have a full grasp of the problems relating to post gastrectomy patients. I came to this conclusion when I did some of my own research and found out about the glucose issues and the fat causing stool issues. My thoughts were along the line 'but you want him to eat all this fat when it's going to cause issues at the other end and you keep saying add sugar when it causes its own problem'.

    I/we do get the lack of a stomach results in there never being the normal hunger signals. We never expect that to be any different now. What hubby is finding really difficult is trying to eat 6 small meals by the clock. Furthermore, he is getting very anxious and upset when he brings the food back or can't eat it. I think there is a little voice at the back of both our heads saying 'you must eat or you will be really ill'. This I think is created by the CNS's who keep insisting he has to eat more and now have him in on appointments every 2 weeks to monitor his weight. They also keep threatening him that if he doesn't begin to gain weight they will have to arrange for a feeding tube to be fitted for 6 months.

    I guess we aren't completely silly regarding this diet thing and yet the hospital et al seem to be putting extra strain on the situation. One of the CNS's actually told hubby that he thought hubby had given up and no longer cared about living! Shock or what?!?! Well it was to hubby, and me really. Yes we are both exhausted by this food and diet dilemma, both physically and mentally, but I don't think it could be said either of us was at the point of hubby giving up on life! I remember vividly hubby seeing the CNS and getting really told off for eating salad. Hubby should've been eating high calorie food stuffs not diet food. Hubby did protest that it was only a side with a small jacket potato and portion of meat, but he was still told it was wrong. This really upset hubby because prior to that he was really pleased with himself that he had progressed from mashed potato and gravy to something resembling a 'normal' meal and he had enjoyed it and kept it down.

    I have biotic yoghurts in the fridge so I will get hubby to see if he can eat a few of them and then see if it helps with the bacterial load in his digestive system. The surgical registrar wants hubby to do a stool sample to test for the presence of a pancreatic enzyme. Apparently this enzyme is needed in the digestion process, but after surgery it can be disrupted or not present at all. Big problem at the moment is the stools have been liquid for the last 2 weeks so a sample can't be obtained. This is in spite of the use of Imodium (can't remember the generic name) as requested by the CNS.

    Thank you all so much because you have answered many of the questions that were flying around in my head and actually eased my mind. Instinct and research was telling me one thing, the dieticians another and the CNS's just persistently on about gaining weight. I think with all that pressure we have got into a stressed state which has only served to exacerbate the whole situation. I have to admit we have stopped off for an early dinner at a local pub/restaurant (nothing special) once or twice just so hubby can eat when we are out. The majority of those times he has managed to eat a reasonable portion and keep it down after. He has felt poorly and tired after once or twice and I guess we wouldn't have done this had he not felt up to it. However, I do wonder if the impromptu and non-stressed approach to food on these occasions have made a bit of a difference. I do Know that hubby gets himself stressed and upset if he thinks I've spent ages preparing a meal, or indeed he's spent ages preparing and looking forward to food, and then can't eat it or vomits it all back. It must be so distressing for him. I've also noticed that if he can get out of eating a meal, if I'm out or something, then he will because as he admitted it's easier not to eat than know you are most likely to vomit, feel portly afterwards or end up with a revolting time in the bathroom.

    Again thank you all for your insightful and educational posts they have been very useful and are very much appreciated.

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