POST OP..... EATING PROBLEMS

Well had the op on 23 May, all went well, and came home on 6 June.. im struggling with the eating. I had 3 cuts when they did the op to remove my oesophagus, the belly, the neck, and one at the back from under my right arm. All scars healing nice, but my neck one feels so tight and as if being strangled,.. im sure this is also giving me probs eating. Tomorrow i go and have the stretch, so i read this is quite normal for many, some have it done a few times!! BUT, i think the neck cut and scaring is causing mine also. Hope to see one of the surgeons whilst there tomorrow, as they do their own stretching i was told, i need to ask them about it,, if not ill have to try calling the team. 4 and half weeks ive been home, so 6 half weeks since op,, and still cant eat meat, etc,, i eat yogurts, soups, egg, cheese, cream, chocolate,, hence im on the loo most of day. Ohh i eat some jacket potato with loads of butter on, and managed odd bit of frozen fish in a sauce,, but everything i eat, seems to sit in the throat for hours,,!!! Many times things make me feel sick, sometimes i am sick,, I am getting so totally fed up with it,, been very strong till now, but its becoming a problem for me now,,, constant feeling of having a marble in my throat.

Would love input from others on this, those who had problems, is it just me, or is it normal,? AGAIN, still think the scar on my neck is making me feel sick also,, many nerves cut, so numb in parts there,,, it feels like something is touching my adams apple and makes me want be sick.

Well will see what the stretch does tomorrow.... but cant keep on like this,

[Mauser1905]

Believe the surgeons will sort out your structure issues. The scar tissue around back will be more noticeable and numbness will take long time to face.

We all need time post op to recover well. You are only six weeks post op and I was in hospital bed all those six weeks after my op. It's five months since my surgery and I am still building strength. All the symptoms disappeared over the period of time, bar one of breathlessness after eating meals.

The neck scar tissue may be more sensitive given the location but if you try to relax, it should help reduce anxiety. I have throat strangling feeling often and have learnt to live with it.

Cheer up.

[Hidden in reply to Mauser1905]

OK, so the numbness stays, argghhh, and seems maybe this lump in throat so i read,,,do we ever get to eat normal again? I know not like before, the size , though id kill for a roast dinner,,, so means never get again,, as meat, potato, veg, and maybe a yorkshire pudding, is defo too much,,, ohh soooo bad, .....

I eat ryvita like 3 times a day this last few days, they go down ok with cream cheese or pate on,,, much better than when i try bread.

Small portion of shop sheperds pie, i maybe can eat half, but cant eat veg with it, though id love to, as too much...

Due to them taking top of stomach away ans stretching stomach to make my gullet again, its like those who have a gastric band i suppose,,,,

At night i have 2/3 pillows prop me up,,, see to stay on my back,, as still cant seem to lay on my sides at mo,,,but wake with very dry mouth and this lump.,, as if i will be sick, but i am not,,,, sometimes wish i was,, but have a phobia abt being sick anyway,,,

But the taste in mouth and feeling is gross...

Have made couple of errors, and ate something to late,,,, horrid,, so now remember not to eat later at night,,,

Did everyone else have chemo before and after their OPS???

[kiddy]

Hi. It is very early days to be thinking of eating meat. I was only on soft food for quite a while. I used to get anxious about food and it makes it worse. Little and often is the best policy. I didnt have neck scar mine was shark bite scar and belly button to under bust. Also couldn't eat yoguart, cream, ice cream and full fat like they wanted me to as caused dumping. Trial and error im afraid but it does improve. I can now eat childs size portion. 2years4mths post op. Stomach doesnt empty that fast but weight is stable. Ask your dietician to give you food advice mine was great at UCLH.

Best Wishes

Debbie

[Hidden in reply to kiddy]

They had me on, or tried before i left hospital, fork mash and that was some mince meals, but made me gag,,, could not eat... Tried later at home, after some weeks,, and we blitzed the mince,, but AGIAN, could not eat,

Last week i tried little of hubbys chicken i cooked him,, so small tiny bits, but nope , back it came,,.. but did eat 6 chicken wings from the pizza when we went there before cinema,,, i was shocked, didnt stick in throat... though think was too many, 3/4 would have been better, but the taste was nice, got carried away... due to the part of the body that tells the brain your hungry has gone from my body,,, never feeling hungry is weird now,

But i know i need to eat, taking time, something im not good at,,, like all to be done quickly.. i am trying to eat every 2 hrs as they told me to do,, but i find it hard, and to find things i can eat or want to eat,,,

Also have not learnt when im full until to late?? Will i learn? That one extra bit, and then feel bad for hours, as if gonna be sick...

I am trying to eat, my weight is ok, not problem at the moment, i actually put on during chemo, before the op... thats gone now,,, back to what i was before Christmas 2017/new year 2018.

Well off to bed as up to ST THOMAS'S in the morning, for the stretch,, back on later in week.

[Alan_M]

It does grind you down and is a big test of resilience, in having to keep on making the effort, but normally things do get very gradually better. There is nothing that you have written that is not within the normal boundaries; your system has to gradually get trained into coping.

Make sure you keep up nutrition levels by the Fortisip type drinks if necessary.

Ask for some advice about whether you would benefit from some anti-diarrhoea medication - it is another thing that wears you down.

It will be trial and error but I would keep a food diary - you have quite a lot of dairy products by the sound of it, and you might try seeing what happens having soya milk or a non-dairy alternative.

It does sound like the food is travelling slowly - the stretch should help with that; and it might well be that you have some issues with nerve damage, some of which is inevitable after the surgery.

The way you feel about 'carrying on like this' is also normal for this stage. In your place I think would consider booking in for a chat with one of the counsellors. It can be really helpful to review how thing are going. I think it is just a rather uncomfortable and distressing transition to the next phase of recovery.

[Hidden in reply to Alan_M]

Having another stretch this Monday, hope this will let me eat better. Think i get the small portions now, well just, 2 years old i was watching ate more than me when we were out last week. Managed after last stretch, to eat small slice toast, and few more bits. The runs are now being look at by Oncologist, as due to start chemo again in 2 weeks, if it gets better. Seems normal there's 6 sessions of chemo, i had 2 and it shrunk the tumor, hence i got the operation...if it had not worked would have been palative care,,.

So now they are to give me 4 more, to make up to 6.

Scars healed well, but still some weird sort aches coming from the scar round the side and to the back.. need mention this next time i see them.

One test re- the runs, infections, is ok,, waiting on 2 more results they did, hope get this week.

[sophielewis]

Hi from Australia

Your description of surgery sounds the same as mine 61/2 years ago for squamous oesophagus cancer. Although the neck numbness was there the chest pain was the worst. Your neck will eventually heal a lot but you may have a little numbness - I don't notice it now. I had 6 months of gradual stretches ranging from 1 month intervals to 2 months and have not needed any more. As for eating I blitz my food with a Bamix. This really helps along with not drinking at the same time - I have one hour between. I found certain foods were more tolerated so it is trial and error. As they removed my gall bladder at the same time I now have a big problem with fat. A couple of times I have had really bad diarrhea and take Loperamide Hydrochloride and that stops it.

It is difficult and daunting at first but you will eventually improve. Good luck

[Hidden in reply to sophielewis]

Tried blending meat, still stuck in throat,,, have 2nd stretch this Monday, my last one (1st) was 18mm... be interesting to see if its closed any and what he stretches it too this time,... I have just got into not drinking and eating near each other,,, about 20min, but yes maybe longer will be better.

My gall bladder already gone from some years back,, one of the test they are doing from my stools, is FATS,,, was told with this op, it can be a problem that fats go straight through you,,, and need to have meds for this,, if thats the problem,, should know result this week,, had one result for infection, thats all ok,,, also another test on stools for cultures, things like bactiria,, awaiting them also.

The neck still numb in places and bit pain, not massive,, but when i wake in mornings, stretch neck, its like valcrose!!!

[Debbiewallis]

Hi Well done firstly ! ... hate to put a downer on things but I’m sitting here thinking, how much I’m dreading tomorrow as yet AGAIN ! we are facing another ‘ procedure ‘ due to structure with the scar tissue . Hubby is coming up to 11 months post op and 7 Stretches so far to date ... tomorrow is a barium meal to check the lumen . I think it may be a case of acceptance that your swallow is never going to be the same . Tony has always felt as if there is always something there . Xx

[Hidden in reply to Debbiewallis]

OMG,, 7.... It is slightly better from first one,, hoping this 2nd will help more,,, fed up with rubbish im eating,,,but managed little of packet sheperds pie, cottage pie,,,i have my food on tea plate lol..

I know its quite norm for these stretches,, and ive been told i have lost scar tissue inside from other ops,,, seems i produce alot,, hence they cut me 3 places, 3rd part in neck, to get to the tumor,, the lump, makes me feel sick all the time,

[Shazandsis]

Hi Yvonne..everything you have described my sister went through so hopefully it will settle down for you...and agree with what Alan M says it is really very early days so please don't get too despondent. It will get better. Just an I used to make the Ensure drinks into jelly. My sis also loved Tip Tops...not very nutritious but soothing. I do hope things get better soon. Good luck Sharon

[Hidden in reply to Shazandsis]

THE ENSURE AND other names, i like the taste ok,, but i find when i drink them, i am in the toilet more often? Was given milk shake ones when left hospital,, had to stop drinking them, as within 30min, i was on loo after for hours, every 20 mins had to run!! Then she gave me the juice ones, very nice, but did same,, and then got some powders where i add my own milk, like milk shakes, did the same,, ,, ???