Oesophageal Patients Association
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Post Ivor Lewis OP

Hi everyone, 3 months on from his operation and my son has had his 2nd dilatation and his jejunostomy tube removed. I can't tell you how much better he feels with it out. The time he spent in hospital dragged so much but it is hard to believe it's 3 months ago. This op has changed so much for him not least his attitude to life. Good luck to everyone in their recovery.

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Suelue I'm so pleased for u both wishing your son a speedy recovery best wishes xx

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Hi, always good to hear people are progressing well. I am almost 6 years post op, and I can assure you it gets better 😊 😊 .

Baby steps

best wishes

Edwina x

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I remember getting the jej tube out. That seemed like a big day. Good luck to your son for his continued recovery and stay in touch

Haward

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Well done. Totally agree it changes attitude to life. Never did I think I would still be here and active 22 yrs  later Good luck it does get better. sally

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 good luck ,  it gets better every day 

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So glad I have found you guys...my 55 yr old 'little' sister having Ivor Lewis surgery a week today...she has had 2 x 5 day cycles of 5FU...believe her tumour is Stagec3....so just hoping the next steps are not too arduous...and that tgey canremove everything. I will no doubt be back for some advice and support.....I am my sister's sole carer....living together for now.....we have done ok so fsr....considering! Anyway, continued good luck to all of you ...and thank you...it really helps to know that you have got through it and living full lives again...I know we jave a tough time ahead...but we are lucky compared to some folk. Bye for now xx

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Fantastic. It does get better. I'm 1,5 years beyond surgery. Still learning every day about food - types, combinations and volume.

There is no dignity in a jej tube. I hated it, getting it out made me feel human again. I'm glad your son has had this big step.....

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I'm wondering if dumping syndrome will get better over time as at the moment my son is really suffering. 

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Don't know. Mine did but does recurr somethings, Have you done much research? I seem to recall there is a major nerve that, if severed during surgery can make dumping worse.

For me it seems to be related to volume and types of food.... Too much food or the wrong foods and things get moving faster :( 

Is he drinking milk? Maybe cut that for a bit... I did and it made a difference. I gradually reintroduced it.

Watch fried foods. Too much sugar is to be avoided, Cut bread out. I can't stomach mashed potatoes - causes problems. 

Some things I've been able to reintroduce over time.

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