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Oesophageal Patients Association
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Ivor Lewis op

I,ve been reading as much as I can about this operation I will be having in a few weeks time is there any way around this dumping syndrome how do you manage it ? When you have to eat small portions what do you call a small portion can you still manage to drink a cup of coffee or tea and I also read about aspiration what is this and why does it happen . I think I,m frightening myself a lot keep reading different things about the op but I can't seem to stop myself x

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You know what Molly, I had my op about 10 weeks ago. I didn’t read up ANYTHING about the op beforehand. There are so many conflicting stories so I just took things day by day. Everyone reacts differently. Of course it’s a big op but I literally just put myself in the hands of my surgery team. Here’s my story. When I woke up from the op I was just so happy. Within a few hours I was sitting up in a chair. When my wife came to see me the day after, she couldn’t believe how well I looked. I was warned of a few complications which would happen including chest infections. They fixed this quite easily by antibiotics. I spent 2 days in ICU then my own private room for a further 10 days. No I wasn’t private.

The pain is manageable. My only problem is when they collapsed my lung to get to the Oesophagus, it didn’t re inflate causing a bad cough for the last 8 weeks. Again, this doesn’t happen to everyone. PLEASE don’t over research this and I would definitely NOT YouTube it. Once your ‘under’ there’s not a fat lot you can do. The Dumping is a pain but the worse that can happen is you feel nauseas and have stomach cramps for 30 mins. I now eat about a third than I ate before. Got to be carefully about sugar intake. I had a cream apple turnover, 3 Tonnicks biscuits, mince pie and cream AND a slice of cake (not all at the same time) and I had to lie down for 30 mins. You can drink but best not to while eating as this will fill you up. Drink after food.

So I’m now CANCER FREE. No more chemo post surgery. Just have to repair now which WILL take a while x Good luck Molly. Honestly IT IS BEARABLE and of course.... better than the alternative x

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Thank you so much for your reply and reassurance I know I read to much about it all then I get upset so to read a more positive reply from you makes me feel better i.m so glad things are going ok for you and hope they continue to do so can you lie down to sleep a lot of people say they can't . Thanks again for your reply x

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Hi Molly,

You are most welcome. I’m glad I didn’t read all the stories because it wasn’t so bad. One question I asked about sleeping after the op. And DONT worry about this. I had 2 epidural pain killer lines in my back. A chest drain either side. A central line in my neck, the lovely Cathater in my ‘thing’. Feeding tube in my stomach. It sounded horrendous. I asked how I would sleep. They said ‘when your tired ... you’ll sleep. And I did. 10 weeks post op I now sleep on 4 pillows just to prop me up a bit as I had a little Reflux. I still can’t sleep on the side where the scar is. That’s still tender. So yes, I sleep incredibly well, just on my back.. don’t you worry darling. I was petrified when I went under and thought all sorts of things. I was so surprised at how well I coped with everything. In fact I made a joke about most things. Especially when my young nurse had to give me suppositories. Poor girl. Hey listen, if you want to chat, you can call me. Don’t worry, I’m not an axe murderer and I’ve been massively happily married for 30 years now. Through my McMillan nurse. I got to speak on the phone to someone who had the operation 10 years ago. It really helped me cope. So if you have any further questions, I’m happy to give you MY advise. No worries if not but I want to become a mentor after this experience. I kicked it’s ass, you can too.

07885 058911 x

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Thanks for your reply you've made me feel better about things i.m waiting for an appointment to start chemo radiotherapy for four weeks then a break before the op I sometimes forget that this is happening and think it's a dream I feel so well in myself with no symptoms were you the same ? Thanks for saying I can ring you and it helps me to know I can speak to someone who's been through this glad you're doing so well after your op thanks again x

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I told my oncologist and surgeon, you’re going to take a fit very happy man and F**k him up. I had never felt better before the chemo and op. A little overweight but I felt amazing. After the chemo it shrunk the Tumour so much you couldn’t see it on the pet scan and I certainly was in no pain with it. A few months later and I’m repairing. It’ll take a while and there are a few big hurdles to jump but like me.... you can do it x

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Hi I know exactly what you mean that's just how I feel I keep thinking they're going to tell me they've made a mistake and there's nothing wrong with me . I know it's just wishful thinking but it's curable and that's the main thing nice to hear from you take care x

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Yo John. 9 years on, that’s exactly what I did. I didn’t even listen to my medical team, the wife did though but I never quizzed her. Still not sure if I’ve got my Pancreas, the night before my op the surgeon said he MAY have to take it out as it was welded to my stomach.

What you described was how I went through, woke up in ICU, they took a tube out of my throat, 30 minuets to get me sitting in a chair with wires and tubes everywhere. After another 30 minuets I was walking,with a Zimmer frame round ICU, giving high fives... the wife shouting angrily... keep both hands on the zimmer.

Were you in St Mary’s Paddington?

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Ha ha brilliant. Same as me. They asked me to do 10 m's ... I'd do 50. Was never going to get me. No I was in the Churchill in Oxford. Amazing hospital, amazing staff x

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Hi Molly

Ring our helpline and we will out all the info you need and none you don't need.

There is so much conflicting information out there which is frightening, talk to and listen to your medical team, ring our helpline for an info pack and if you want we can put you in contact with someone who has had the operation and can offer tips and info from their experience.

Everyone is different so some things may happen, others may not so the journey will be interesting.

I am 12 years down the line now.

Kindest regards

Dave

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Well said Dave. 100% agree from a 10 week post op x

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Thanks for your reply I will ring the helpline I am trying to take each day as it comes but i.m terrible at overthinking all the time i.m keeping as busy as I can and sometimes even manage to forget about it all for a short time but only a short time .thanks again .

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In your preparation for the op my suggestion is to get as fit and healthy as you can. Make the most of the time available by walking and exercising so that the op has less impact. Everyone comes out of the op differently. Do not worry about dumping until and if you get it. You will not be alone and your GI Specialist Nurse and dietician will help you manage your issues. Good Luck tanktank.

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As others have said do not over research as there are many post op symptoms that not every gets, after 6 months I could eat anything I wanted within reason. IfI could give you one piece of advice it would be to get mobile in hospital as soon as they let you, use the spirometer to assist chest recovery, the most common causes of post op comps is a chest infection, so however rough you feel try and get mobile quickly. As you may have been told this is a major operation and you will take a long time to recover, 6 months or more if you have post op chemo. I was mixing concrete 3 months after and the nurse was not happy !

I am 4 years in and living a full active life

Good luck

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Nice one mate. I totally agree. They asked me to walk 10 yards... I walked 50. Not to push myself too hard. I just knew how important it was to get mobile quickly . I’m 10 weeks post op and it wasn’t as bad as people say x

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John

Nice to see your posts are more positive than a few weeks back. Good luck with your recovery

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Yeah just this damn cough and I’m done x

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Thanks for your reply I definitely won't be mixing concrete but so glad you were able to ha ha . I hope I feel able to do the things I take for granted now . Take care x

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I fear not. You can only mitigate the syndrome in my experience. That means finding out what the triggers are by monitoring what you eat, when you eat and how much you eat. I also find that it comes and goes in intensity. An empirical approach, if you will, is the only way to manage what is an inevitable consequence of an operation that basically f**** up your digestive system as you once knew it.

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brilliant

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Hi Molly

I'm 3 months post op and have now found that I eat a goodish breakfast, sausage, mushrooms, tomato, egg and baked beans, this lasts me till lunch time, I do not eat mid morning, lunch is cheese on 1 slice of toast or similar, then maybe a snack 4p.m.ish, and an evening meal, may be chicken potatoes and veg but about a child's portion, then possibly cheese and biscuits at 9 p.m.

Whilst I lost 4 stone during the chemo and up to the op, I'm stable now, I try to eat protein and carb at each meal if possible.

OK so we all have to live with some 'dumping' but it's something we have to live with.

As others state, drink only 30 min after eating, or have a little water with your food to help swallow it if needed, I have mid morning and mid afternoon drinks, if it's coffee then with full cream milk.

You're going on a journey to your recovery, be positive you will cope with everything, and life is good !

The OPA have a contact to buy a 'wedge' pillow to prop you up at night, I have one and would suggest it is well worth buying.

I now have returned to the B-B-Q and am eating chicken, steak, etc although a smaller portion than pre op.

So as others have said, get as fit as you can before the op, and after, go with the physio to exercise the day after the op if they want you to.

Good luck on your journey to good health, take everything in your stride, some days will be rough but they reduce in time, I am enjoying my new lease of life and so will you.

Jeff

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Hi Molly, I was worried too 8years ago nd insisted on meeting someone who had had the op to see if they were normal!

The answer is you will be able to eat and drink small amounts when you first start too it used to be about 6 days after the op while you are still in hospital. Think about babies in the beginning they have small amounts lots of times a day, our gut is the same as it heals and learns to work again,

Aspiration is when you breath acid in to your lungs but if you stay at a slight angle it won't happen, but it can happen to anyone, I had a bout of pneumonia this summer due to aspiration of bile, but I'm still here bouncing around. Dumping is an occupational hazard after this op, it starts at different times for everyone and it's caused by different foods or combinations of food at different times, I treat it like getting drunk, if I go mad and have that fabulous dessert or wonderful hot chocolate I know I will get dumping but it can be sorted with some glucose tablets, jelly babies, dolly mixtures, whatever you feel happiest with. You learn and it's totally manageable. Small portions well in the beginning really small you slowly go bigger but I still only eat child size portions, one thing you do learn is eat your favourite food first, and don't feel embarrassed to ask for a doggy bag, every resturant will give you one, eat all you like buffets will normally let you have a child's buffet, it just takes time, I opt for novell cusine restaurants whan it's my choice, I eat all 3 courses.

Don't worry, it is a frightening thing and if you read and study everything you can find you will feel like running away.

It's better to have a look through recipie books and smoothie recipes finding the most fattening recipies in small sizes, eg advacardo, with creamy prawn salad, ritz crackers and Camembert with red currant jelly Cheese and mustard mash with a poached egg, muffins, etc so when you feel like it you have some ideas of what you want to eat. ( it's more fun too) .

Good luck

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Hi Molly,

I wanted to offer my experience, I'm at 15 months post op.

I had my surgery, in August of 2017; they had me up and moving on day one. 3 days into recovery, I caught a chest infection they had to go back in and surgically clean it out. I was in the hospital for 3 1/2 weeks before going home. They ran blood tests and xrays every day, had to check on my every bowel function and I was up having to walk a few laps around the ICU a few times a day. (3-4) You lose your sense of shame when you are in the hospital this long.

I was a very lean person going into surgery, I stand 6 foot 1 inches and weighed about 145 lbs (sorry for my American units of measurement, 185 cm tall/about 10 stone). I had 3 "drain tubes" out of my right side and a feeding tube on my left which ran directly into my lower bowels and pumped all my nutrition/medicine. I went home with the feeding pump, and had to use it in home for about a month, also went home with 2 drain tubes emptying into a box I had to carry around like a purse, over the course of 45 days they removed 1 at a time.

After removing the feeding too and sending me off on my own I was 118lbs. (about 8.5 stone) This was very hard for me, I lost all my energy and strength. I lost my job this last March because I wasn't able to maintain a full time work schedule. I could hardly eat 1 scrambled egg in the beginning. I became very depressed during this time, I could just barely eat enough to maintain my 8.5 stone. I had issues sleeping, I was throwing up every night.

Summertime was very good for me, I got sick of moping and holing up at home. Despite all my clothes not fitting me, and every comment outside telling me I looked like I needed to eat, I ignored the comments and started walking my dog every day, fishing, and even later in the summer I purchased a kayak (super huge for getting my ribs/chest/shoulder in motion). Still no weight gain, but now I was sucking down water like a fish and my strength was coming back.

Dumping syndrome came and went, mostly it was too much sugar. Breakfast cereal is a big one, even now if I have a full bowl with milk I will get dumping. It's very rare now though. I prefer eggs for breakfast anyway.

Through most of this last year, it was 2 eggs scrambled for breakfast ( usually with half an onion and mushrooms cooked in). I would have an Oatmeal bar for the "2nd part of my breakfast". Lunch was usually a cup of soup and a piece of buttered toast, half a turkey or ham sandwich for my 2nd lunch. Dinner is whatever we had for dinner I just ate in 2 portions and slowly. I drank milk as much as my body would tolerate. I put cheese in everything. Heavy whipping creme, anything with good fat calories went into my diet. I snacked whenever I could, chips, cheese, crackers

My ribs and right lower back hurt during this time, and it still does. Its very sore, but I still have full range of motion.

None of this seemed to be anywhere close to a shadow of "normal", about 2 months ago something changed almost over night.

I have a voracious appetite now, I can eat anything and everything and will. I bite small, chew lots but can now keep up with most my family as far as eating. I snack all day with 3 major "meals" in between. I bake a lot now so there is a plethora of cookies, pies, snicker-doodles, etc in the house, something I can just mindlessly grab in passing and munch on. (Anything made with butter or peanut butter or dairy is pretty much a win on your calorie intake)

Yesterday I had 2 waffles with butter and jam, 5 strips of bacon and 2 scrambled eggs for breakfast, took me about 20 minutes to eat. Lunch was 2 pieces of BBQ Chicken pizza, and for dinner I spoiled myself and had 2 chalupas from Taco Bell. (Remember, I am also snacking on god knows what in between)

I am up 11lbs from 2 months ago (about 9.5 stone), and am just fine with my quality of life. I start my new job as my hometowns Postman walking 10+ miles a day with a mail carrier bag at the end of the month.

Everyone is different, but at some point it will feel like you're struggling, just know it does get better, sometimes almost overnight it seems. My ribs still hurt here and there, and I definitely have a ways to go to get back to my desired weight 165lbs (11.5 stone) is my goal. But I enjoy eating again, I sleep well, and I look forward to tomorrow.

You will burp and hiccup a lot, acid reflux will be much more frequent in your life, find yourself a good acid reducer. Sleeping at an angle is hard to get used to, but its not as bad as it seems. Dont eat too much 2-3 hours before bed, and if you do have to have something, have a little Apple Cider or Lemonade (Chocolate Milk is my fav) and wait 30 minutes before laying down.

I am 31 years old this coming January.

Good luck!

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Hi you've certainly been through a lot and at such a young age . It's good to know you're doing so well now and able to eat so much thanks for replying to me it has helped me a lot . Take care x

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Hello Kajeo,

just to get it right (I read your first post a couple of months ago.) You had oesophagectomy to remove a benign tumor? You're young, so if it wasn't cancer, was it achalasia? I wonder because in my early twenties I already suffered from oesophagitis. And at 58 it was cancer.

Anyway, you're doing great! Best wishes, Monika

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Correction: At the age of 57 it was cancer, now I'm 58 and 9 months post surgery.

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Just a freak tumor or mass or whatever you want to call it. I actually have 2 more on my kidneys as well that I have to have checked and measured to make sure they are not becoming some kind of problem. I am/was 100% healthy otherwise. Had it not been for the circumstance and what I ate and when I ate, I probably still would have not known.

I dealt with stomach cramps, random bouts of nausea my whole life and I just assumed it was due to poor dietary decisions. Apparently it was because there was a mass growing causing blockage.

Doctors sad there was a good chance it was going to become cancer.

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So you were lucky to have it detected when not cancerous and removed. Although such a big surgery for a benign tumor is a big step, I think. Take care that these on your kidneys are checked regularly. Best wishes, Monika

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Thank you for sharing your story. I have my surgery in 3 weeks. Will be paying more attention to my exercise after reading your post. I’m 56 and want many more years!

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Just don't push yourself too much! Your patience will be tested a lot this next year, and sometimes it can even seem hopeless. Reach out when you feel like this, family, friends, anyone. You will get through it, and life will be good!

I remember the day after surgery, it took 3 nurses to help me out of bed. I was so weak. By the end of my stay, I could just barely do it myself. Just a handful of months ago, I could hardly get through cutting the grass and doing simple yard work. 2 weeks ago we had a tree fall on our fence line, I trimmed it with chainsaw and branch loppers, loaded up all the brush and fixed the fence, and cut myself a good log pile for the winter. This morning I was wrestling with my 80lb bulldog, carried him outside and tossed him into the snow. Little twinge in my ribs from stretching the muscle too much, but I need it.

I cant imagine where I will be in another 6 months, but I'll bet my life that'll be miles ahead from even where I am at today.

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Just what I needed to hear!! Thank you and all the best!

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I think the best piece of advice you have been given is from TankTank-get as fit as you can before the op. My husband's medical team told us this and we took their advice. He walked further each day up to the day of surgery. In fact we went for a long walk the day before he went in. In the end, he was only in hospital for 8 days instead of the ususal 10-14 and recovered well with no complications.

It will also help you to stay as calm as possible.

He now eats fairly normally. Dumping happens occasionally but he always carries dextrose tablets, which usually work.

We wish you well with your treatment. Keep in touch on here - there is a lot of support which will help.

Love

Louise

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Hi Louise, can you share how long your walks were? Did you just start with what could be done and build from there?

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Just do what you can do and it will grow from there. I started with pacing in my backyard until I was winded, when you first get home you are attached to a lot of devices that you have to carry around with you so getting too far from home was a chore. 4-5 months post op I was at 2 miles a day. Now I'm getting ready to start my new job where I have to walk 10 miles a day. Phew.

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Thank you!

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It's a case of what you can do. He started at about a mile every day with the dog and ended with about 5 miles I think. This was after his first 3 cycles of chemo and before the op.

He's now about 15 months post-op and we did 7 miles recently! He walks the dog every day for an hour or two. We use an app on our phones called Friend Locator (recommended by someone on here) so I can see where he is and that he's moving case he gets a dumping episode ( gives me peace of mind)

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That is a good idea, I will load that up as well.

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I have been a regular dog walker for years and after 37 years in the Army have difficulty doing nothing. I got my daily walking up to 12-15 Kms in 2-3 long walks listening to to the radio and knackering the dog. Great exercise, fresh air, mind off the operation and a good nights sleep but....

Everyone is different. Go easy, set your own targets and make the walking an enjoyable activity that you look forward to . Best wishes tanktank

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Hello Molly

I am six months post op and get mild intermittant dumping mainly with sugar I have eaten reasonable serves of food with main meals and snack size meals in between since leaving hospital I have noticed a gradual increase in my capacity to eat although I pay for it if I have a sugary desert, especially too soon after main meal. You learne from experience and soon adjust to your particular pattern everybody's different Get some good enzymes to help digestion and just go slowly I get very little reflux and only occasionally dumping It is all better than the alternative good luck

Colin Jones

Mudgee NSWAust

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Thanks for your reply can you still manage to drink cups of tea and coffee or can you not drink as much . And do you sleep at an angle or lie flat . What happens when you have dumping is it painful ? Sorry for all the questions but I need as much info as I can get .

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Hello Molly

Sorry didn't mention the dumping, two types we are all different so it varies sometimes soon after eating called early dumping mostly I find from too much sugar causes discomfort with stomach ache and cramping pain time and hot water bottle and Astragalus tea have all helped? Sometimes a bit of loose bowel also , late dumping about an hour after eating usually from eating too much or too spicy food, similar simptoms takes a bit longer to go away you just have to work out what's best for you through trial and error

Cheers

CJ

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Hello Molly

Yes I sleep propped up with a few pillows neck gets a bit stiff if too much angle just have to wxperiment . Dumping varies between cramps and diarera with a touch of nausea I have never vomited usually just a few mild cramps in various areas of belly I find drinking a herbal tea called Astragalus helps to settle ypu will work out what foods upset you soon enough

Good luck

CJ

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I'm nine months in after the op and I have never really suffered dumping syndrome, I try to respect my stomach and eat small amounts quite often, I mainly graze all day. I take Lansoprazole daily and rarely suffer from acid reflux or bile. I have a bed that can be adjusted to any angle and that helps a lot although for the first few weeks I was more comfortable in an reclining armchair. I also have the 'wedge' pillow which is really good. Sometimes during the night I come down and sleep in the armchair when I feel a bit stuffy. I drink tea and coffee and have a couple of small beers at lunchtime. I don't eat much in the evening which helps the stomach but I'm never really hungry apart from first thing in the morning when I have 1 Weetabix and later cheese or egg on toast. I avoid fresh white bread, crispbread or toast is much easier to swallow. Meat can be difficult and should be thoroughly chewed which can be a bit boring, I seem to spend my life chewing but its worth it. I had my throat opening enlarged a few months after the op which helped a lot and probably needs doing once more because food does still get stuck occasionally. Because of a hereditary blood clotting condition I have not been given chemo or radium but have just passed my second big scan with an 'all clear'. I guess I am one of the really lucky ones. I have a Labrador and walk a lot as well as gardening, keeping fit and active is probably the most important thing. Having a wonderful wife and family also makes a big difference.

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Oh Molly, I know it’s human nature to want to read about these things but you should try not to. I just took each day as it comes. I knew it was a big op so decided not to research it. What can you possibly do about anything knowing what they’ll put you through. Just know you are in the best hands.

Re the dumping, I can’t work it out. I’ve just been up to Glasgow to a music conference I organise and speak at. I’m usually last to go to bed but was ‘dumping’ both nights and was back in my hotel room straight after dinner. First night was after eating too much. It just makes you feel nauseous, light headed, stomach cramps, bloated and on occasion causes diarrhoea. Second night I ate a pizza. I think it was the oily melted cheese that caused it. I honestly think you should eat a 1/4 to a 1/3 of what you used to eat. I just sip small amounts of liquid with meals as it does fill you up quicker. Better to have food fill you up than liquid. I screw up when I’m away from home. I’m supposed to eat every 2 hours but when I’m away, I find that difficult. My wife goes mad. I’ve lost a total of 3 stone. Look, Dumping isn’t nice. I certainly don’t get it all the time. Our eating habits will change forever, but surely that’s a small price to pay.

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Hi thanks for getting back to me I agree with you about trying not to read to much it won't change anything and I know I,ve got to have it done. You sound like your coping well with everything which is really good . So I,m going to try to stop reading so much . Thanks again .

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Hello Molly

It's Sun Morning here in Mudgee yes you can still drink whatever you like just go easy on anything toxic or acidic or very sweet moderation is the word Dark spirits, fortified wine and red wine are particularly high on the danger list because of the alcoholic content and the tannin from the wood aging process you need to drink plenty of water and tea and coffee are also high in tannin and caffeine just take it easy and try some of the herbal teas and coffe substitutes green tea is better than black tea and you could try roasted dandelion root these are both high in antioxidants teas include liccorice, ginger, Astragalus, google will give you more choices Unfortunately you have to sleep with your body elevated to stop reflux you can turn on your side if you keep elevatedbut start out on your back till the surgery heals you just have to try different positions that suit you It's all very daunting but better than being in the ground or in an ern on someone's mantelpiece

Hang in there put your trust in the doc and go for it

Good Luck and best wishes

CJ

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Hello John,

I read your replies with great interest and have come to the conclusion that I must be incredibly unlucky.

On the Professors advice (pre operation) I walked three miles every morning rain or shine before breakfast. I augmented that with a one hour session with weights and various bull worker type exercises and also a step machine and static type exercise cycle.

Also on the Professors advice I ate as much as I could and my weight climbed from nine stone six to ten stone eight and I was as fit as a butchers dog. No kidding, incidentally my weight had been nine stone six for many many years and I had never put on additional weight in my life.

I went in for the Ivor Lewis on the Monday and was back at home after about thirteen days, five or six of which were in ICU.

When I went back to the hospital for a post operation check in the gym, they said that I was as fit as I was before the operation.

Within six months my weight had gone down to six and a half stone and my energy and stamina levels the same, they plummeted.

My diet is incredibly limited and any bread, pastry, cakes and biscuits, dairy products and a host of other things cause me extreme dumping, so I am finding it extremely difficult to put on any weight but I have managed to get back up to seven stone.

I have never been a quitter in my life, but the most I can manage now walking is about a half a mile before I have to sit down and struggle to gather my breath. I don't smoke or vape, and can only manage a half pint of beer before it wants to come back up.

Earlier on your e-mails I see you are a very short time post operation and I hope your health continues as it has. For me more than three years down the road ahead of you, I am still struggling to regain at least some of the fitness I had before and in truth am still happy that I had the operation and do agree with all of the comments regarding preparation for the operation which I did as I say follow myself, but in truth for every one out there who is as lucky as you there are an awful lot more who are still struggling.

Good luck with it all

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Having this operation on the 14th of December and I am petrified. Thank you for your post, makes me again realise that this is going to be a massive recovery.

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Hi Mate, I'm so sorry to hear your story. Yes I have been incredibly lucky. It could have gone a lot worse. I still have an issue with coughing so hard. This came from the lung collapse. I have to 'empty' my lungs of a thick frothy phloem every couple of hours. The pain is subsiding. I love walking and we slowly stroll about 3 miles at the weekend. My body is haggard and I've just started weights to try and get some muscle back. I'm going back to work a couple of days this week to see how it goes. I was overweight to start with. I fact my surgeon says my fat caused him a few problems. I was 15 and a half stone down to 13 stone. How do you deal with your dumping? I've had it a handful of times and it's awful isn't it ? Can you not go back on the food pipe for your food intake? I was a little unlucky when i pulled my pipe out by accident 3 weeks early. Yikes. Anyway, please keep in touch. We are both still alive which is a bonus every day xx

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Hi John,

Thanks for your reply,

It is much appreciated and I am pleased to hear you are doing so well, apart from the lung problem that is. Strangely enough I have exactly the same problem and have to see a lung specialist on Tuesday, and I am hoping this will improve my stamina and fitness. Going back to the scans revealed problems with my lungs which hopefully can be addressed easily, I will let you know how I get on.

I suspect I am like you in that I have always been pretty fit.

As for the dumping, that is a difficult one, but I have had to make a note of everything I eat and if I dump with it I cross it off of the list, but as I said it means your diet becomes seriously restricted.

I must admit I have resorted to a lot of vitamin supplements that body builders use and it has kept my weight relatively constant at seven stone.

Unfortunately I don't want to sound narcissistic, but I have always had quite a good body and now I am a bit of a bag of bones! Still I must be positive I am still here.

I did discuss the food pipe with the team, but they said the only way they could do it now would be via my nose! I thought that it would be awful having a tube poking out of my nose all the time so I see that as a last resort.

I have tried the supplement drinks, but they come straight back up.

Still I can still make music and work on my old car (albeit a bit slowly) and so life is not all negative.

Don't go too mad with the weights, your body needs more recovery time on the inside and as long as you can do the gentle walking etc or swimming, keep that going.

And most of all good luck with your continued recovery

Best wishes Richard

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Thank you Richard,

Yeah the lung thing is so tiring. Just so frustrated. I seem to be doing well apart from that and the Dumping. I just had wine, dips, crisps and nuts and dumped pretty much straight away. Have you had the stomach stretch yet? Have you tried creons?

Yeah I seem to be a bag of bones st the mo. What music do you do? I’m in music publishing.

Keep me posted x

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Hi again John,

Yes I do take Creon, about five or six a day, but what I find a bit frustrating is that they don't tell you when to stop, but I did notice a lady called Liz Crisp was saying that she just stopped on her own and so I may well try that.

Your meal tonight was a bit of a combination! it is difficult when it keeps dumping like that. In the early days I used to have to lay down for an hour before it passed which was awful.

I had the pylorus stretch (I think that's what it's called where they try to stretch the junction between your stomach and your intestines) about two and a half years ago.

It may sound like an odd question but do you feel as if you have a tight belt on just above your belly button position? I do and it is most uncomfortable.

Another question, are you sleeping in a sitting up position, and are you taking lanzoprazole or another proton pump inhibitor?

Regarding the music I like all sorts but for me folk like Fairport or Sandy Denny, John Martyn and some acapella, you tube Coope, Boyes and Simpson Jerusalem or only remembered or lay me low.

It is a bit of an acquired taste so wouldn't suit everyone.

When I was young in the mid sixties I used to do a lot of Doo Wop with five others it was brilliant fun, and great for meeting the girls!

The beauty of doo wop was you didn't need any instruments and used hand claps and clips and voices for the rhythm.

Make sure you take it easy with going back to work, you don't want to do too much too soon.

Regards

Richard

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Hi richard, I take Creons W he I remember but I’m not sure what good they are doing. I also take PPI. It’s the one above Lanzoprozole. I do get cramps at the bottom of my stomach when dumping. I tend to have my head and chest elevated in bed as I had a couple of Reflux issues at first but not sure I get them now .

On the music front. One of my oldest friends, Tilly Rutherford does a great show on UnitedDJRadio. He was Pete Waterman’s right had man for 30 years. Here is his Facebook post. He’s an expert at Doo Wop.

Put on your cat clothes and get ready to dance tonight at 5pm till 7 pm uk time Chantillys Doo Wop and Rock n Roll show on uniteddj.com.Be there or be square.Just go to the App Store and download United DJs

The station is owned by my old boss Tony Prince. He also has all yhevold DJ’s in there like Mike Read, Kid Jensen and Emperor Rosko.

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Hi Molly,

Thanks for your reply, and please try not to google too much. I think you will get as much info as you need from OPA and all of the people who are posting post op (so to speak).

Most of all, don't forget that we are all different and the way the operation affects us is quite often different. One very important thing is do your very best to be strong and try very hard not to worry too much, I know my post may have sounded a bit negative, but on the positive I am now cancer free and very happy that I had the Ivor Lewis.

Life will be different, but I still get to see my children and grand children and in February I will get to see my first great grand child.

This wouldn't have happened without the help of the team of Surgeons and Doctors and the myriad of other people in Professor Hannas' team so keep us all posted and keep your chin up and hopefully all will be well.

Incidentally I was like you, seriously frightened before the operation but I think you would be crackers to be otherwise.

Double Good luck with it all

Best wishes

Richard

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Hi Molly

It was my hubby not me that had the Op 15 months ago now and as the others have said don’t get panicky over other people’s stories as no two people are the same ! I fully expected Tony to be in hospital 10 days but he was home after 6 and eating soft food the day after! I won’t say that we haven’t had a rough ride since but he’s HERE !! and getting fitter back running , full time work after 6-7 months and building our house so just think positive ! Good luck x

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Hi Molly. If you get dumping it’s very manageable as are any other side effects. It’s not something to worry about. The main thing to remember is that it’s the tumour that is being targeted by treatment not you! Once that tumour is gone you’re going to be fine! It’s great that you feel well it’s the best start. I took great pleasure in visualising the tumours destruction during treatment! There will be lots of people to help you with temporary side effects. And there will come a day when you can concentrate on your usual worries not just the cancer ones! Though that might seem impossible now! All the best Suzy

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Hi molly, my husband had it in Sept 2017. We were terrified about dumping etc and I promise it’s not as bad as it sounds. He knows now not to have a big glass of water or cup of tea before he eats, and he eats portions that looks very normal but just isn’t as much as he used to eat. Fruit juice is a big cause of dumping for him so he tries to avoid it. He finds that taking some time just to relax after eating helps a lot (no more washing up for him!!) and if he has a big meal in a restaurant, we’ve had occasions where he’s needed to go home and lie down afterwards while the discomfort passes. However, for him, the op removed his cancer, and my goodness, a wee bit of discomfort if he eats too much is so worth it! Good luck, xx

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Thanks so much your reply has made me feel reassured and most of the time I think positively but it's the times when I feel down and start thinking of all the worse case scenarios and I just can't seem to stop these thoughts but reading replies like yours really helps so thanks .

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I was terrified before the op and my hubby was so depressed. A lovely person on here told me that she’d had the op and she could still eat a 9” pizza - it’s amaxing how much that reassured us!! Everyone’s body is different. You just have to focus on following the advice, and giving yourself time to recover. Don’t read too much about it, get the advice from the doctor that’s based on your circumstances and then take the time to build up your eating and accept that there will be some foods that cause the dumping - but you won’t know until you try them. Experiment at home and stick with what you know when you’re out. For my husband, he’s noticed he gets a bit more wind now, and dumping if he eats too much, drinks while he eats, or has too much fruit/juice, but is otherwise doing well. You can do this - good luck :) xx

Ps. My hubby asked the surgeon to give him as much stomach capacity as possible as he loves food! 😂 The surgeon laughed and said no one had said that to him before, but afterwards said he kept it in mind throughout the op.

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Hi Molly ...my husband was very lucky in as much as he never experienced the dreaded dumping syndrome. He was home from hospital on day 6 - the only painkiller he had was Paracetamol. We were on holiday in Ibiza 6 weeks later. 6 months post -op he won a golf tournament!

Everyone is different and I wish you all the luck in the world

Take Care

Deborah

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Hi so glad to hear everything has been going fine for your husband and that you were able to go on holiday so soon after the op is great . Thanks

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