Pete updated and concerned - Oesophageal Patie...

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Pete updated and concerned

Valerie01
Valerie01

hi you lovely people here in the group well hear goes lol pete has had antibiotics and steroids his last day today I was wondering if anyone could tell me if this is normal pete has now been told he can have soft food ie pasta, shepherds pie and has not done 2 bad until today he is just exhausted spent the day in bed cannot keep anything down at all not eaven had a full enshow drink today its just like it was before the operation the consultant is phoning on Wednesday should I be asking anything Specific I must admit I am very worried about him again today he said he doesn't feal ill he just exhausted is it normal can anyone advise us plz for the people that haven't followed peter's story he is 15 week post opp but had compilations and has only been out of hospital for 2 weeks plz can someone give advice or reassurance 🙏 thank you for taking time to read this post x

10 Replies
oldestnewest

Hi there, maybe he is eating too much and getting dumping. Be careful with high fat and sugar. Trial and error. Try little and often. Could be anxiety too.

Is he on Jeg feed or just food now?

Best wishes

Debbie

He is on just food but hasn't eaten much since he got home he's had nothing much today at all every time he tryed he has been sick and I thought dumping was at other end i didn't realise it could be both ends lol

Hi, Have you tried soup or puree foods in small amounts?

Yes but he is on next stage up

I shift between stages according to how well my husband eats ie back to mince and puree foods.

If the day’s consumed calories is s bit low I’ll try to make-up the calories with:

2 tbsp peanut butter (he enjoys it too)

add a dollop of cream or 1 tbsp Sustagen to the bowl of soup

Replace a meal with Fortisip protein & energy drink.

I tried a sip a of lucozade which helped revitalise my taste buds

I had similar problems. After 3 years of constant vomiting, I went against the rule about not eating spicy food. I had a very hot Indian curry. It stayed down and I didn't have bile reflux choking me in the night. I eat curry at least twice a week now. Good luck.

Hi Valerie. It doesn’t really go in stages. It’s much more a what works for you thing.

It takes 18months to 2 years to get to I Don’t really hink about it anymore . after the chemo and the op you feel absolutely exhausted. And slightly shell shocked. You haven’t had time to process what’s happening and you are 6 months on at least and wondering if it’s worth it. You haven’t really eaten for ages and often don’t fancy food and when you do it doesn’t tast right. Eating starts to feel like a chore not an enjoyment. If you eat one mouthful too much you will feel yuk for ages. Sometimes all you want is the sandwich filling forget the bread, An egg cup of really tasty soup Is great it tastes nice doesn’t cause a pain when you eat it and 20 mins later you fancy some more. A lemon posset made with cream and sugar or a little melted chocolate mixed with an Beaten egg white and cream. Forget about meals and meal times. A handful of cimamon breakfast cereal was a favourite snack of mine Or a prawn cocktail but just the prawns and sauce no lettuce or bread. The gut needs to slowly get used to food. Think of it as you would getting a baby to eat solids. You are training the gut to accept food again. And we all do a few steps forward and then one back. The Foods you like change regularly. Your taste buds are in chaos. For a while. We are all different and all tolerate foods differently. I still can’t manage bannans but many can. I don’t eat pastry just the fillings of pies and quiches. Chips are something I only eat a few of even 10 years on but give me steak and a cream sauce I can eat as big a fillet as anyone. It is a slow process and you will encounter dumping along the way.

Do find an upper GI dietician Guys and St Thomas’s in London were very good. (Iit was a few years ago when I was Involved) Some will offer private appointments it can be well worth it to help avoid the stress food and weight gain can cause after the op.

Take care. Big hug. Lizzy

Thank you, your comments were helpful and so true as that’s my husband’s relationship with food now.

Now he couldn’t stand scrambled eggs and I can see he struggles trying to finish his meals so I usually tells him ‘it is ok if you've had enough, we aren’t going yo count calories all the time’.

Luckily he has s sweet tooth so he enjoys rice pudding, panna cotta, creme caramel and they are easily over 200 calories each.

You gave me a good idea ie I’ll try to find a dietitian to guide me on how to manage his meals.

Hi there, I see you have messaged me but I can't find your replies, I didn't want you to think I was ignoring you. Hope all's well with you

Kind regards

June

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