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Oesophageal Patients Association
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life after ivor lewis op

ive just had ivor lewis operation coming upto a month ago ,very tired and weak any advice ,thanks guys

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Yes, be patient - rest as much as you need to and get used to the idea that it's going to take a while to get used to your new plumbing, and a new kind of 'normal'. And - don't let it get you down! Wishing you well👍🏻.

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thanks magpuss means a lot

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I'm 15 months post Ivor Lewis. Its reall really tough at your stage and you need to take every day at a time and try and get your digest system up and running again, even getting a really small amount of food in you is good at first (a couple of spoons full) just to get your system working. My nutrician was so bad I became Anorexic and ended up back in hospital for a week, luckily they had fitted a JeJe feeding tube during my op which gave me 1000 calories when sleeping, I went from Eleven and a half stone to below Nine stone, I've now just reached Ten by eating 6 small meals every day, I substitute meals for peanut butter cookies that I make, to get the calories on and save cooking all the time. Set yourself small goals to reach and be determined, fight on and don't give in and you will come through ok, best of luck.

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Hi Rasor,

Your in it for the long haul, just pass the 10 yr post. still get tired but I,m still here thankfully so just take it steady listen to your body and let nature do its work, all the best for the future.

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I had the surgery in early 2007 and was in iCU for the first month as I had multiple complications but my husband dragged me to a wedding in Portugal in June that year and things did start to get better. There are certain foods that I still cannot eat (broccoli is a no go) and I do have to eat smaller portions still, I also still get tired but I am still here and I even had my children within 5 years of my total esophagectomy surgery.

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I couldn't cope with broccoli either but I found that if I pureed it it was absolutely fine. I froze it in small portions so I always had some to hand.

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Hi I m 4 months from my op, no weight gain but not losing and trying to eat at least 4/5 meals daily.

Little and often is the key and some of the digestive problems are settling down.

It's damned hard but keep going it does get better

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i'm 14 weeks since ivor lewis operation and still getting use to what foods are best for me, cut out the spicy,greasy and cakes full of sugar. Now cut out bread and i have stopped feeling bloated and improved my bowels.Still ache down 1 side and feel weak if i try to do too much but able to do a lot of walking. I was like you after 4 weeks so take it steady and do has you are told .

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Good Morning Rasor

As many have said ...and we are learning also ....it is very very very early days! My husband Tony is now 10 weeks post op and as I write this I am anxiously ( getting a habit now ) waiting in the hospital after dropping him off for his third “stretch” in 6 weeks! I hope and pray that you don’t suffer the same issues as the weakness has got worse and worse due to the now serious weight loss!

But still we’re told to be patient...it will get better but from what others have said it’s around 12-18 months . You have had the biggest surgery ever available on the NHS......DO AS YOUR BODY TELLS YOU AND REST !! It’s been like the equivalent of being ran over by a bus which then reversed ! Although we are having major problems...I can however see that Tony is less tired now than few weeks ago...so there is gradual improvement...hang in there and BE PATIENT.

GOOD LUCK

Very stressed wife Deb

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Hi Deb I am 10years post op and had at least 2 stretches a year till my surgeon (he seemed like a friend these last years,) recommended the largest balloon there is, it had not been used before as it might split the new tube you have it can be sorted. if it does, I said why not, can't be as bad as the main op' IT worked great, He has even signed me off from Hospital , and put me back to my old doctors.

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thanks for your thoughts ,really appreciated

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Hi there. Yes just take is slow. Eat frequently not to much though. Take pain killers. If you have a garden small walks around it. It takes a good while to get used to your new normal. I am 4years post op and back to work. For two years now. Good luck. Lab

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Hi Rasor

I am four and a half years on from the operation and doing fine. I still have the occasional disagreement with my digestive system but I now just take that as a fact of life. You are in very early stages and the advice you have got above is great. Take it a day at a time. Try to get some exercise; walking is ideal in my opinion. If you're tired; lie down and sleep!

Keep in touch and good luck

Haward

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I was back to eating the normal pre-op things for me about 8 months post-op, though in somewhat smaller amounts and with little to no liquids consumed with the solids. You will have to experiment. Once you get to eating more, you may well find that reflux returns and I have found that chewing gum right after meals is a big help in warding that off. Of course, I also use the more standard medicinal treatments of omeprazole, ranitidine and gaviscon. As the medical people have no doubt told you, walking as much as you can daily is a big contributor to more rapid recovery. Also after about 8 months post-op of sleeping in a reclining chair, I found that I was gradually able to introduce less "cant" to my sleeping posture and am now sleeping in a bed normally with two pillows under my head. I am slightly more than 2 years post-op at this point. Keep plugging--it gets better!

Worth

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