Don't know what to expect: Hello out... - Oesophageal Patie...

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Don't know what to expect

Igirl5
Igirl5
28 Replies

Hello out there, in I am trying to find out about the surgery called esophagectomy. I need one but fear the unknown. I need to hear more from people that had this done. How is it like to have the stomach to take the place of the esophagus?? The esophagus is a muscle that contact. Does the stomach do that. ??? I'm 61 and don't know what to except with this surgery. Doctor explains in his terms, but I need to hear from people who experienced this surgery. Please help me understand. Also your recovery time and when did you have surgery. Thanks in advance .

28 Replies
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Mauser1905

Hi,

You have come to the right place to seek information. There will be many posters willing to offer the information, however suggest you to go through the older posts on same nature so you can get more detailed information on past experiences of both the OP and responders.

Good luck with your treatment and recovery

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Igirl5
Igirl5
in reply to Mauser1905

Thank you so much for replying. I will go through older post because I need all the info that I can get so It will be a little easier for me to get through this. Thanks for your input. Have a good one

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Magpuss

I had the op' in 2012 at the age of 72, so don't let the age thing worry you. It's difficult to say how it might affect you, as many of us seem to react differently. For myself, the worst part was the coughing and then being sick after eating. I hadn't been told that this might happen so thought something must be wrong, it wasn't - it was just my body trying to adapt. That lasted a few weeks, it stopped happening once the feeding tube had been removed- two stitches had come out and the choice was to have it re-stitched or remove it, the doc decided to remove it. I don't know, but I think the liquid food ( I think it was called Forsip) was too sugary for me to digest. I was supposed to drink two bottles a day as well as putting it into the feeding tube three times a day but it was so horrendously sweet that I didn't always manage the drinks. Dumping syndrome wasn't much of a problem for me, it happened occasionally- and still does from time to time, but only very rarely. Having been told about it in advance it didn't worry me, and it doesn't now - I get plenty of warning if it is going to happen. But - I try not to make any appointments before 11am, 'just in case'. It only ever affects me after breakfast and that's regardless of what I've eaten. The hardest thing to get used to was knowing how much to eat. Sometimes a single mouthful too much can cause real discomfort for an hour or more but when there's no feeling of fullness before having that last little bit, it's hard to know when 'enough' really is enough.

You're right the stomach doesn't contract like a muscle would and it doesn't have sphincters to prevent food and drink coming back, it's all down to gravity. So - no bending down or even leaning too far forward after eating or drinking and no lying down in bed - or anywhere else, at any time. I have a large wedge pillow plus a v. shaped one and three others to prop me up in bed, I also have an adjustable back rest for when I'm away from home - it's easier to pack than all those pillows. It took a while to find the best way to arrange them and find the best position but my little nest is now very comfy.

Generally speaking I have no ongoing problems, my meals are only slightly smaller portions than I used to have and very spicy foods are the only things that I can't tolerate. It took a while for my body to get used to the new 'plumbing' arrangement, and for me to get used to my new 'normal' so don't be in a big rush for normal services to be resumed - your body will decide that for you.

Hope it helps to know a little of what can happen, wishing you all the best💐xx

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Igirl5
Igirl5
in reply to Magpuss

Oh I thank you so much Magpuss. It really help to hear from one that have actually experience this because I'm kind of scared. I am trying to build myself up for it because

I have a funny feeling that I have had digestive problems from birth but no one knew it.

I do know I can't go on like this any longer so this info you shared really has given me some insight and a little encouragement to go on. May God bless you and I will giving to others like you have given to me on this site while I am recovering. Thank s so much. Talk soon.

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Wynnerz
Wynnerz
in reply to Magpuss

I have had an Ivor Lewis oesophegogastrecromy, sounds the same!

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slobjohnb

I had this operation known as the Ivor Lewis procedure 21 months ago. It was first done by Mr Lewis in 1947 so it is tried and tested. If all goes well it is amazing how the stomach can be stretched to replace the oesophagus without any serious problems. There are many issues involved but if you read through this forum you will get a better idea. It is life changing but also life saving. I have now regained all the weight I need, I can eat almost anything in small quantities. Best advice - eat during the day not in the evening. There will be discomfort after surgery as the nerves and muscles knit back together but not real pain as such. You will be given tablets to control the release of excess stomach acid and will have to sleep on your back at an angle because there will be nothing to stop stomach acids coming up the throat. You will soon adjust to this. It is amazing how quickly the body adjusts to these changes and if all goes well you will thrive. Watch out for loss of fitness after the op, take regular exercise and don't try to eat too much. Little and often is best. Any questions contact this forum. It helped me a lot.

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slobjohnb
slobjohnb
in reply to slobjohnb

Magpus is so right, everybody is different, food intake, sickness , dumping excess acid- all are different for each of us. So sometimes don't take the forum too literally, it may be better (or worse) for you.Take one day at a time and I'm sure you will do well.

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Igirl5
Igirl5
in reply to slobjohnb

Thank you so much for the heads up. I was hoping to get rid of the refluxing. That is a big problem for me now. I have been on Protonix which is for acid reflux for too many years. I'm scared of getting brittle bones because of it. I was hoping this surgery would make that disappear. Guess I'll just pray for the best. Thanks for the info.

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Wynnerz
Wynnerz
in reply to slobjohnb

I too have had the Ivor Lewis, and everything you say is quite true! I’m 2 years post surgery!30 kgs down

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kiddy

Hi there,

Firstly there is two types of surgery one is keyhole which is less invasive the other is open surgery. The Ivor Lewis is a shark like cut across your back under the arm and from your belly button up to your chest. This involves collapsing your lung to get to the oesphagus and cutting through ribs. The op is a big one. You will need help after from family/friends.

I had a feeding tube called a Jeg put in during surgery which fed me for 3.5 weeks and left in for a while to see how my body worked.

Eating is like weaning you will start with liquids, then purée then mashed until you get onto solids. Small amounts little and often. It’s amazing how little we eat for months getting up to child size portions!!

Yes a lot of us suffer with dumping syndrome where we cant tolerate some foods. We are all different I cant have yoguart, ice cream full fat or high sugar .

You need to get up and move a couple of days after. Build up walking and progress onto other exercises.

Weight drops on average 2 to 3 stone from this op but many gain some of it back over the years. I lost 3 stone but have put on a stone in my 3rd year after surgery.

Hope this helps

Best Wishes

Debbie

.

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Igirl5
Igirl5
in reply to kiddy

Thank you Debbie, every little bit helps so I can get the full picture of what to expect.

How long did it take you to recover ??

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Wynnerz
Wynnerz
in reply to kiddy

I too have had an Ivor Lewis it is life changing!

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Mark4

Good luck the op is very tried tested and routine in major centres so you will be fine

The fitter you are the more comfortable you will find it so exercise before the op within your limits good idea

Marvellous life saving surgery so lucky you up for it it will lead to eating discomfort of all sorts but very manageable and small price to pay

All the best

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Igirl5
Igirl5
in reply to Mark4

Thank you so much Mark4, I need all the info I can get. I'm glad to see it's not the end of the world. Many has had the op and live to tell about it. Awsome. Thanks for your in put. I hope to come back and tell my story on this site too.

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SurreyGuy

Hi there. I had my surgery 13 years ago. I waited longer than I should have for the surgery as I needed to know I had no choice. That way I felt I was mentally prepared for anything. The surgery was undertaken in a specialist centre where they do at least three a week so everyone knew exactly what they were doing. These are the main things for me in the first few months.

Pain - actually not as bad as I expected. After 48 hours my pain was being managed with just Paracetamol as I hated the stronger medication and it was fine.

Nausea - this was a real surprise and was possibly the worst thing of all. I found this very difficult and it lasted for a few months and then completely disappeared.

Coughing - for the first few days you are required to cough. This is to keep your lungs clear otherwise lots of shallow breathing can cause an infection (shallow breathing reduces the pain). I found coughing quite tricky but the physio was very patient and i never got an infection.

Mobility - absolutely not a problem. I assumed I would find getting out of bed a challenge but the most difficult bit was managing the tubes and equipment not my body.

Eating - I was advised that eating will initially be difficult as my body adapts but to stick with it as it improves. That was such good advice as Initially I felt food was trapping air. But, this did resolve.

Dumping Syndrome - yeah, most of us get this and it is kind of unpleasant but we quickly learn the triggers and manage it through diet and portion control.

Weight Loss - I lost exactly what the dietician predicted. About 32 pounds. It then stabilised and has remained static ever since.

Diet - I could physically eat anything. Even Pizza. But, some foods would cause dumping syndrome and I avoid those now. Alcohol not an issue.

I think those are my highlights. I hope that helps? You are right to be worried as it is major surgery but in summary it was not as bad as I expected.

Steve

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Igirl5
Igirl5
in reply to SurreyGuy

Thank you so much Surrey Guy, every little bit helps. With the replies that I am getting they sure are helping me get the picture, so I can brace myself. I like to be warned.

I can't wait to inform others on this site like you guys are informing me. Thank you so much.

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jeffw663

Firstly you are one of only 30% who are able to have this op, I had mine on 2nd July 2018, one has to be honest at 73 it was very traumatic BUT I was only in hospital for 11 days, the first 2 in intensive care with tubes coming out of me from places I didn't know you could have tubes !

It does knock you back but within 2 months I was eating everything I had prior to the tumor being found and have now regained some of the weight I lost because of the cancer.

For me recovery was slow but my wife commented that each day she could see a small improvement in my well being and fitness.

I had no sickness whatsoever after the op and absolutely NO pain from the moment I woke up. Being fed via a jejostomy tube was odd but they have to feed this way for the first 10 days or so to allow the 'join' to heal.

You must welcome this op with open arms, don't be afraid of it it is your chance to continue to live, OK not fully as before but you can cope with the side effects (mainly dumping) and eating smaller meals.

After about 8 weeks I had stopped eating 6 very small meals a day and was back to a cuppa in bed in the morning then the normal 3 meals a day, eating all foods BUT smaller quantities, I even have my own smaller plate.

We go out for meals but now take a tub to put the food that I can't manage, to take it home.

Do not be afraid of this, the surgeons who perform this op are all fantastic, I even had mine done with keyhole surgery.

Good luck and stay positive.

Jeff

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Igirl5
Igirl5
in reply to jeffw663

Hi jeffw663, I want to thank you for taking the time to giving me insight. These replies mean a lot to me so I can better look at what to expect. If you can do it I feel I can get through as well. I hope to have a good recovery also so I can help others on this site also.

Thank you so much.

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AoifeMcC

It is the new normal but it is very much a life, I married 2 weeks post chemo, had my total esophagectomy and then had my 2 children before I turned 5 year survivor and was diagnosed in late 2006.

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Wynnerz

Hey there I’ve had what’s called an Ivor Lewis where I had bottom 15cm of my oesophagus removed and most of my stomach removed and pulled up and joined. I also had sphincter sat too if stomach removed! I am 2 years post surgery , if you would like to hear more just let me know and I can fill you in! Tracey

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Igirl5
Igirl5
in reply to Wynnerz

Oh yes Tracy, I will like to hear more. I thank you for your time. I have a picture but there is always room for 1 more. Tell me your experience and how long it took you to recover.

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Wynnerz

Hi there, this is my story! I went on holiday with my husband and had a bad chest infection, when I got back I went to Dr who sent me for chest X-ray. They discovered a mass in my chest. I have endoscopies and biopsies, along with a cardiac stress test to make sure I could cope with the surgery. It was a very emotional and tense time, we decided that we wouldn’t tell the family u til we knew what we were dealing with. The GI surgeon I had was incredible, he said best case scenario, they would be in and out and finished in a few hours, but 10 hours it took to remove the mass that was a leiomyoma (non cancerous) thankfully but it was in a very difficult spot. I had a cut from top of rib cage to the bottom and around my back shoulder, 2 broken ribs, and along with this mass I had had a collapsed lung. As the mass was 17cm and had been there a long time it was well and truly stuck. The surgeon ended up doing an Ivor Lewis oesophagogastrectomy! I had my stomach removed and sphincter and 15cm of oesophagus. man it was major! I had a feeling tube for around a month, that was the hardest time and I suffered badly from depression. I found the feeding tube hard to cope with and vomited constantly! I ate small amounts of mushy food for Weeks and gradually built up to normal things, but in small quantities. I am so fortunate to have a wonderful husband and family as I really struggled mentally. I went back to work around 3 months post surgery. It was hard but I had to do it for my headspace! The freaky thing is that although being overweight I never knew this thing was inside me. I am good now, I have an electric bed so I can sleep upright, as if I lie down I gurgle and food comes up through tube. I eat small amounts often and I have lost nearly 30 kgs. It is a long slow process but I’ve cme though it and I now feel good, and have a new “normal”! IHOP’s you find that interesting, just ask if you have any questions Tracey

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Igirl5
Igirl5
in reply to Wynnerz

Thanks Tracy, It helps. I like to know what others go through. I am glad you got through that.

I am going to brace myself and go for it. I don't think I have a mass or cancer of any sort according to their test, but I don't want to wait around to get it either. Well guess I will go speak to the doctor and set that date. Thank you so much

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violetqueen

Hi I just want to add that I had a Transhiatal oesophagectomy . Not keyhole but not cutting through ribs and deflating a lung ! ( thank heavens ) .You end up with a scar which basically follows the bottom of your rib cage ( like a roof top ) and a small one in your neck .

Mine was in 2013 and I'm pretty good now .I'm 69 and it's hard to tell when i'm feeling off if it's part of normal ageing or lack of stamina due to the new normal .

i wish I'd known that the opiods/strong pain killers in hosptial after the op would skew my sense of reality ,and make the light on the wall opposite my bed look like a grasshopper ! Oh and that they can give you terrible constipation . Taking preventative measures and getting the laxido/movicol in would have been a top priority .

I also wish I'd known that looser fitting knickers and a camisole vest with built in bra or shelf thingy would be needed to keep me supported but without a tight band just under my bust and on top of the scar .

I favour these because they have a bra fitting which you can leave undone for a looser but still supportive fit .

bravissimo.com/products/pj-...

where abouts are you situated ? are you in the uk ?

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Tanktank

Dear Igirl5

First of all don’t worry. The operation (often called an Ivor Lewis) is one of the most established surgical techniques there are. I am 63 and had mine 15 months ago. It is serious surgery and the fact that you have offered is good news as it indicates that you are healthy enough to undergo it and it offers you curative outcome for your problem. Take the time before surgery to get as fit as you can. Walk or exercise to build up your strength (I was up to 10 miles a day) to help your recovery. The fitter you are the better particularly if you are also having chemo before and after. The surgery is life changing but it is manageable. You will have to eat little but often. You will need to be careful with your food choices and will need to control fluid intake to in between meals as your capacity will change. You can’t have big meals washed down with lots of drink. It’s not ideal but you will quickly learn what does and doesn’t work.

Sleep at night will change as you have to ensure you head is well above your chest - sleeping in an almost sitting position. At first it’s awkward but again you’ll soon learn how to organise your pillows, supports etc to get comfortable.

After surgery again get mobile as fast as possible to help your scars and the surrounding muscles mobilise and recover.

You can get all sorts of helpful devices (bed wedges, shaped pillows etc) from specialist suppliers and pay no VAT as a survivor of a serious illness - and that is the most important fact. The surgery offers you a chance of survival.

- you are one of the lucky ones.

I hope everything goes well. Best wishes

Tanktank

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Helenmick

Hi Igirl5, my husband had this surgery in 2015 I just wondered which hospital you are under as some lovely person on here may be able to give you more info from the same hospital. Good luck with everything xxxx

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pegcburke

I see that you have already received several responses, which is helpful. I, also, recommend that you look at some of the old contents of this site to get a lot of your answers.

I would definitely recommend finding a surgeon who has done a lot of esophagectomies and also does the minimally invasive surgery, which is much easier to recover from than the full Ivor Lewis surgery!

I had the surgery 3 1/2 years ago (I was originally diagnosed as Stage 3). I lost about 50 lbs. total and due to dietary limitations I can barely maintain my weight now. I returned to work about 2 months after surgery (mostly office work, some driving), but due to lower energy level I decided I could not keep up a full time job. I am now just working part time.

Another useful website, in the U.S., is smartpatients.com . You'll want to click into esophageal cancer and there is a boatload of info from both cancer patients and their caregivers in this site.

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NatChap

Hi, my Dad had the Ivor Lewis op 2 years ago aged 70. He sailed through the op but struggled with the chemo after...however he is still cancer free and has regained weight (he lost a lot and really looked very skinny and unwell). He is also back to full fitness and walking most days like before the op, once a week he does a 10-12 mile walk!

He has to eat little and often and if he tries to eat too much, he will suffer a little with loose stools and tummy ache and generally has to have a little lie down but mostly now he can judge when he has had enough.

He does have to avoid too much sugar, cake icing for example really disagrees with him.

It does take some adjustments, and obviously everyone is different but staying fit and staying positive are definitely important factors!

Good luck xx

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