Firstly I have spoken to the team and I am waiting for an appointment for a endoscopy.
I am 6 months post op. Ivor lewis, robotic. T3,N2,M0, histology all clear.
All has been fine, usual side effects have been Dumping, hypos, it’s a huge foodie learning curve.
Energy good, walks, swimming and just started on bike and treadmill at the gym.
A change for me is, which has happened now four times in the last week.
I have eaten a meal, 1 lunch, 3 evening meals. I eat and then I get pain in my back /side, hot flush, excess saliva, acid reflux and on two occasions relieved myself by being sick, basically bend over the pan and it happens.
I have not had any reflux until now or discomfort/ pain after eating until now. I take 30mg of Lansoprazole daily, I’m thinking of increasing this to 60mg?
The nurse has said it sounds like a narrowing at the joining sights? Dr wants an endoscopy, which I am waiting for.
Anyone else had a similar experience?
It’s weird how it is not every meal?
Jennie ✨🌻
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I am 12 years on from my Ivor Lewis , the first year was different but life is worth living so I want to wish you well , sounds like your doing all the right things just now again the body reminds you of the serious operation you have gone through, take care be strong x Tina
I am 11 years post op, I still get this. I find its after I've eaten too much. I find a warm wheat pack can help relieve the pain, worth trying. I have had 2 tummy stretches and I'm waiting for another. It helps a lot and lasts around 12 to 18 months. I've been told that this can be done as many times as I need it. Try not to worry too much, your doing all the right things. Good luck and stay in touch, support helps. June x
Hi June, can I give you today’s example, breakfast fine, snack fine, lunch fine. Evening meal, ate fine, once finish, pain, mid back R side. I got the shivers, goose bumps, then the reflux, I just had to be sick for relief. I really do hope it’s a narrowing and it’s to much with the build up of food? Thanks for your reply. Jennie x
I hope it is just a narrowing too, I am sure it is. It is easy to get worried over anything to do with our oesopahagus after what we have been through.
Try to stay positive and please do let us know the outcome. X
PS: rather than increasing your acid reducing tablets, try drinking water with a couple of teaspoons of apple cider vinegar. Our stomachs need acid to break down food. I've had lots of success with this approach.
Hi Andersal, Just be careful I greatly reduced my PPI and tried natural relief about 4 years post op. Then at my next regular endoscopy it was discovered I had Barratts , I very rarely get reflux that I feel or know about. I went back on 60mg PPI now 14 years on Barratts under control. Make sure you get regular check. I also had hyperglycaemia before I was diagnosed with cancer and find movement is my greatest enemy too. Cheers Lizzy
I am 30 months post Ivor Lewis and suffer similar issues after eating in the evening. My evening meal is the biggest of the day so I put it down to that. I have had countless stretches (dilations) of the entry & exit of my conduit but, for me, the results never last.
You could have curves in your conduit which impede the passage of food and may result in food particles remaining in your conduit. I have this condition which was picked up via a CT scan with contrast.
Hello, I had my endoscopy yesterday and this is what was found.
I have a pyloric stenosis at the bottom of the oesophagus before it joins the small bowl, so it makes sense what has been happening with me. I have to go back for a 2nd attempt in 2/3 weeks with a liquid diet 72hrs before. The were not able to do a dilation as the conduit was full of food from 24hrs before. Because I am not able to eat much I have lost weight, now I know the issue I will revert back to a soft diet high in proteins and fats.
He said all looks normal, no signs of cancer. He said this is quite common.
Wanted to let have my update, thank you again for the support.
Oh Jennie that's good news. I always have to do a 72 hrs fast before endoscopy as my food doesn't empty properly. But hopefully next one they will be able to do what is ended for you. Xx
Hi Jennie.Yes I have lost nearly 2 stone again. The procedure is great, I get so much relief from it. The surgeons have said i may need more than one, this will be my 3rd. Still can't figure out what the pains are though as the pancreas cyst apparently wouldn't cause that.
I guess it understandable that we will loose weight, it’s hard to eat the food in, I feel I am eating less now then after the operation. Still when it’s done I will get back on track.
What sort of pain do you get, I get discomfort/pain on R side, back, only after I eat, especially if to much, they said it’s associated pain🤷🏼♀️ it goes if I am sick, so it makes sense.
How long after the procedure were you eating your normal again?
Hi Jennie.In the early days the pain in my right side / back was dreadful, I couldn't move with it, I eventually found it was because I had over eaten, I still do occasionally. The pain I am experiencing at the moment is in my upper abdomen just under my bust, usually just after eating. It's almost like cramping. I have spoken to the team this morning and I am having a colonoscopy. I am also booked in for next weds 16th, to have a tummy dilation. I have thickening of the bowel, not sure why.
It took around 3 years before I could eat bigger meals, I have my food on a tea plate which I find ample, it's really trial and error. I have put on weight since the operation, but found it really uncomfortable, we are learning everyday.
You are very welcome for the support, anything I can do to help you, I'll do my best xx
Good luck with the dilation and the colonoscopy, sounds like your team are on the ball and supportive.
Yes meal size is the culprit, once I have had this dilation I will be sticking with the tea plate for a while, small and often. New habits take ages to build.
Thank you Jennie, the team have been really good with me, I only need to contact one of the nurses and they get me seen. Getting used to new habits is hard and we all " fall off " the wagon at times. But we pay the price. People don't understand how uncomfortable it can be.
Good luck with your dilation, I am sure you will find such a difference. Keep in touch.
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