Ivor Lewis operation on oesophagus is

[Papanang]

I was diagnosed with a tumour in my oesophagus. Had chemo followed by surgery to have oesophagus removed and then more chemo . Last infusion was some two months ago .

My problem now is that I am suffering from what feels like trapped air in my throat . I try to belch but it does not clear. After food or drink it becomes severe . I have started to be sick and it is mostly bile . I am losing weight because my food intake has decreased because it is so uncomfortable.

I am wondering if anyone has suffered from this after having an Ivor Lewis operation and if so how they have overcome this . Many thanks

Andy

[Ollies12345]

morning do sorry your suffering I don’t know about your problem have you spoken to your team? As of loosing weight my dad has the same issue and I have ordered him some build up protein powder it’s from my protein raspberry and lemonade clear weight gainer 450 calories per drink, I’ve ordered the juice as milkshakes fill him up to quick, you can get Fortijuice I believe they are called from you dr these will help until your feeling better with the current problem, I know it takes time for things to settle. Wishing you a speedy recovery Ali x I received some really helpful replies on her as to keep calorie intake.

[Papanang in reply to Ollies12345]

Thanks for that . I have spoken to my team but they don’t seem to have any answers as yet . I am back on the protein drinks as of yesterday so fingers crossed and thanks again .

[Cosmobabe]

Hi there! May I ask how your bowels are doing? I started getting sick and bring up bile when I was constipated after the operation. Once my bowels were cleared out this did help.

Is there anything in your diet that would increase the gas in your stomach such as fizzy drinks?

I'm 6 years post op and still have issues - my stomach sphincter closes up so I get botox put in it every 3 months otherwise I have increased problems with acid and I feel nauseous. I sometimes have low blood sugars after eating so I eat tablets for hypoglycemia.

Just for info - due to the "new plumbing I also kept losing weight for 2 years after the op and the amounts that I could eat were very small e.g. couple of spoonfuls which also worried me but that was the new norm for me. The amounts being eaten will increase slowly over time - for me it was very slow.

Everyone is different and what works for me might not work for you. Everyone will have different issues also. Keep going especially with a positive attitude and you will get there. Its early days.

Keep on at your team for help to resolve your issue.

Take care,

Cosmobabe

[Papanang in reply to Cosmobabe]

Hi there . Thanks for the reply . My bowels seem to be working fine and I have avoided all the no no’s that could upset my new plumbing. I have spoken to my dietician and upper GI nurses but have had no answers . I will persevere and thanks for taking the time to help

[liz_crisp]

Hi the feeling of trapped air does happen. I found drinking something fizzy could help as burping and vomiting can be difficult after the op for a while. The gut is completely relearning and like a baby your gut needs a bit of help. Putting your arms up above your head can help as can getting someone to Pat your back. If you are chucking up bile it can be eating too much for your new plumbing, or you may need a stretch. Weight loss is very normal it will eventually turn round but it does take a while. Make sure everything you eat has lots of calories use cream and butter. Add cheese to vegetables put sauces with food and add mayonnaise to sandwiches etc dont eat low fat stuff. And don't eat too much in one go. You will find what works for you. As you progress thing Change so keep trying. Do also always check with the CNS or Doc when things persist as they can help with various motility drugs and creon for weight gain when needed. As well as stretches etc Good luck

[Papanang in reply to liz_crisp]

Hello Liz. Thanks for that and I’m sure it will work out it’s just so uncomfortable . You mentioned stretches . Is that me doing some stretching or is it a procedure.

A.

[liz_crisp in reply to Papanang]

It's a procedure, lots of us have them, many more than once

[Cavalier3]

Hi Papanang, yes this describes exactly how I was for the first few months. I’m now 3 y was ran and 6 months post surgery. I found that eating foods that swell was a culprit. For example oats are a no no for me. Also too much bread. I’m actually now Gluten free. I have been for 2 years and it was a massive turning point for me. I explained how I felt to my surgeon with the constant trapped wind feeling and I also used to struggle to breathe. I said it feels like the food is stuck in my stomach and it’s pressing on my wind pipe. He said that’s exactly what it is. Also, keep portions small. I also find a fizzy drink helps release the trapped wind. I hope some of this helps. As things settle down the sickness does get better. Let us know how you get on.

[hunsdon]

I wish you well on your road to recovery it’s a hard road but so worth it x

[Lab1]

wonder if you need a stretch. Hope it settles as must be so uncomfortable.

[Molly14]

hi Andy - sorry I just saw this - I suffered from trapped air in my new oesophagus for 6yrs - had all the tests but nothing found - I developed the technique of (sounds terrible but you get used to it and it’s instant relief) sticking my finger down my throat and by doing that all the air released - I had to do it quite a few times a day or I’d just feel so nauseous - I woke up one day 6yrs on and it was gone - but then recovery from Ivor Lewis is a rollercoaster- I’ve developed other problems that I didn’t have before 🙄 hope this makes you feel better- I haven’t come across too many folk with this but a few - although always best to keep talking to your specialist nurse - all the best

[Badger2024 in reply to Molly14]

That is exactly what my daughter would do as she has always been unable to burp. Just her anatomy. Gastroscopies show nothing. She’s now 29. Last year she had Botox injected into the sphincter and has been able to burp ever since. Some people need repeat treatments but muscle has memory apparently and gets used to the change with the Botox. Maybe worth a try. Must be very uncomfortable