Oesophageal Patients Association
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Dad s not progessing after esphegectomy

Hi everyone my dad is around 8 weeks post op now and we dont seem to see any improvement. He is sleep deprived despite the zopiclone and temazapam medication he has tried. This in turn is causing him to feel exhausted all day.

The last 3 days my dad has felt sickly and now has 0 appitite even brushing his teeth is causing him to wretch. Hes lost about 3 stone now despite the jeg insitu. He has been taking anti sickness meds as requested by the dietician .... my dad told my mam today that he feels terrible and wishes he had not had the op.

I spoke to my dad and reassured him that it wont be forever and he will feel better soon. How long before he will start feeling a little better?

Is this normal ?

He looks terrible and has lost loads of weight and has a awful colour

He is really really struggling to eat as he just feels sick constantly despite the antiemetics ?

My dad seen the consultant and dietician last week and seemed happy with his progress, however this week he seems to of gone further back. Ive seen 0 improvement since his op.

Has anyone got any suggestions? Im at a loose end

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This may not be relevant in your dad's case but I stopped being sick the same day that the jeg was removed. A couple of stitches that held it in place had come out and when they were being replaced the feeding tube was accidentally pierced. This happened roughly three months after my op' and there hadn't been any plans to remove the jeg at that point, but for me - it made all the difference. It took a while to begin to regain weight and at 72 I felt very old and weak, but over five years later I enjoy my food with only the occasional bout of dumping - which is probably my own fault for having a a few too many dairy foods.

Don't know if this is any help to you but perhaps - (only with doctors permission) if your dad stopped using the jeg for a day, or two at the most, I wonder if it may stop the sickness? Do hope you find an answer to your dad's problem, its horrible. My sympathy to your dad and best wishes to you all.

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Hi Magpuss

Thanks for your reply , I believe that the jeg does contribute to my dads sickness and nausea. My dad said he brings up the feed on a morning and said it tastes like a poison in his mouth.

My mam actually said she is tempted to leave the jeg off for 3 days to see if the sickness improves. But im not so sure as we dont want him more weak than he is its a hard decsion. The dietician would never advise this as they want to keep it in for if and when he has the chemo.

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Hi Hope,

I know I say this every time, but I could have written this myself about my own Dad.

My Dad lost about 2 stone in less than 2 weeks at one point.

It took him a while to get his sleeping straight and even now it's not perfect.

He often still heaves, and when I FaceTimed him this morning he was heaving and retching.

His eating is still up and down. One day recently he had 5 cuppa soups and not a lot else.

Then sometimes he can eat ok and will eat around half a meal.

This evening he is enjoying a glass of wine.

Things do get better.

I was similar to you and felt that he got so much worse first.

But now I look back, it was gradual, but he did improve.

I know how terrible it is, I really do.

I just hope that he picks up soon.

My Dad is now nearly 5 months post op, but his radio knocked him about more then the chemo and more than the op. So he is still struggling, but he does still have good days.

Hopefully these are not too far away for your Dad xxxxxx

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Hi again Amy

Its so hard isnt it , i hate seeing my dad so weak like this. It certainly is a long recovery for them.

Im glad your dad has picked up and this gives me hope that my dad will pick up gradually over time.

Im trying not to keep talking about food to him as i think this frustrates him. My mam has decided that she is not going to cook and just let dad graze on crackers , crisps , cheese ect.

He has had a few build up drinks but to be honest I think they make him feel sick. I just think all the milk including the jeg feed and the milk he has on his breakfast is probally too much.

Take care ❤

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There is a stage when some people do regret having the surgery, and a low point where people can get depressed about lack of progress. The progress is far slower than 'normal' surgery. It might be worth him simply trying to nibble biscuits or something very bland for a while. He should check the anti sickness medication to make sure that he is taking it correctly.

Trying 'attractive' food to generate his appetite probably won't work.

If he can cope with the build up drinks that the hospital supply (or a GP can prescribe) this will keep him going to some extent, but losing weight to this degree is par for the course, and probably a lot of how he feels and looks is down to this aspect.

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Thanks for your reply

I do think my dad is getting down about the slow recovery and the trouble is my dad did not want to know the in s and outs of the surgery and I dont think he realised the extent of such surgery.

I keep reminding myself that my dads slow recovery is normal and hopfully he will pick up.

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I am sure that things will pick up. People all cope with the problems in their own way, but some do find it helpful to talk things through with a cancer counsellor. It does take a lot of resilience and persistence to keep on making the effort. If Dad feels a bit better this week than last week he is going in the right direction, despite having a few down days in between no doubt.

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I hate to say it but yes it is pretty normal, it's a long hard road. Although I was very lucky and after my initial 'blips' I recovered well but I know my wife suffered more than me seeing me loose 4 stone in 4 months from 15.5st to less than 11! When I returned to work I still could only eat 2 chicken nuggets and a few chips at a time and it took around 6 months to get to my goal of a happy meal! It is hard but thankfully most of us make the journey surrounded by our loved ones and that really helps. I hope he feels better soon but don't get too frustrated or despondent he will I am sure make the journey successfully 😃

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Thanks Ray

It sounds like you have made good progress that in its self is a positive and gives me hope that these blips will subside eventually.

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I was very ill post the surgery, I even missed the window for post treatment chemo (I did have it before) - it does pass but it does also take time. Please reassure your dad that it does improve. Even still I see improvements and I had the surgery in early 2007. I could eat very little at first but over time things did get better and now I can eat a normal meal,if not a very large one, I still find certain foods do not agree with me but that is a small price to pay,

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Thanks Aolfie

I dont think my dad is well enough for chemo, your story gives me positivity that if my dad is unable to have chemo then its not really the end of the world as you have been cancer free for yrs. Thanks for your reassurance again.

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I, too, feel like I could have written this post... sorry for your family's struggle. Have they checked to see if he needs his esophagus or pyloric valve stretched?

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No nothing like this has been mentioned ? What does this achieve

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Perhaps this is not a concern for him, then. I just know my husband has had his pyloris stretched twice, and is scheduled to have it done again this week, it seems that due to the restructuring of the "plumbing" and the cutting of the vagus nerve during the initial surgery, that strictures prevent food from passing. my husband did not tolerate the feeding tube well, and when he went to soft foods, he felt like they just stayed in his chest. He vomited all the time and could barely sip water. After the procedure, he drank 4 oz of ginger ale immediately. A barium swallow is done to see if the food is passing.

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I would suggest leaving dairy out all together except for tea or coffee. This is what I did, I still only drink Oatly (the refrigerated one) from Sainsburys. I also took pro-biotics which I got from Holland-Barrett and I ate Bananas cos they slid down easy. At first there were lots of things I couldn't stand, for instance potato, but now I eat it, I never went back to dairy, I found cheese heavy on the system as I did pasta, I don't eat bread. My vegetarianism went out the wndow cos now I eat chicken, Pulses are good, I figure things that are easy for the digestive system to digest is probably the best, but again everyones different.

Also, your dad should have been prescribed oromorph, if he takes 10ml of that 20 mins before he eats he should be able to handle food better. Hope this helps.

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This is a very difficult operation to get over. I'm almost 3 years on. I have had to find my own way no support or post-operative care. The most important thing is to be there for him, what I didn't like was people telling me I would get better. My reaction was how would they know. It does get better in time, but just take one day at a time. I just lived on a liquid diet for a few months, then soft food. I would eat anything that would stay down. Also, he will need to go back a retry food that he couldn't eat before. I also drank protein drink which helped a lot. I also have to go back 5 times and have my esophagus stretched with no anaesthetic. In the end just give him a hug makes all the difference

.

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Just a thought to share with you Hope ( lovely name by the way) as I don't know enough about these matters to comment -

Your Dad saw the Consultant and dietician last week and they seemed happy with his progress. However, this week he seems to have gone further back ?

So why not phone the Consultant 's secretary and ask for a brief call from the Consultant or ask her to pass the message on that your Dad has actually deteriorated since being seen last week?

Also phone the dietician and update her/him.

Has he had anything prescribed to stop the Reflux coming up. I don't suppose Gaviscon Advance is used in patients in this situation.

xx

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Hi thanks for all your replies and good advice. They have prescribed 1 week of Dexamethazone and today has been day 1 and my dad has picked up a little and has eaten more in one day than he has in 2 weeks. I hope this is a turn for the better now 😁😁

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