Oesophageal Patients Association
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Six weeks in

Hi guys, I had the Ivor thingy operation almost six weeks ago now. I was very lucky and it appears they got all the cancer out when they removed my Oesophagus and 42 lymp nodes. I am re learning my eating habits , trying to eat small portions every two hours. Although difficult, I’m coping with that. I accidentally pulled my J feeding line out. My surgeon says he reather I eat more than out it back in. Again, a pain but doable. I’ve lost 1.5 stone. The BIGGEST problem I’ve got is this damn cough. If I take a big breath or even talk to much (whichbi ofyen do), I cough so much I bring up the thickest white/translucent Pleamb. I’m trying all sorts potions to help. I’m currently in Codeine Linctus. Anyone got any advise. I wonder how long this cough will last?

Also one last thing. I’m taking 2x Tranadol and 2 x Paracetamol 4 times a day for pain relief. How long should I take them for?

Thank you x

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Hello John,

I never had a cough after my op so can not help you with that.

I am diabetic but was told to eat as if I wasn't to keep weight up...I lost 4 stone...but I am a big lad :-) so could afford to lose it.

I used to eat stuff with high fat content and butter not margarine, I use butter all the time.

As for the pain killers, tramadol makes me constipated so I weaned my self off them but kept taking paracetamol.

Really only you can know when you can stop taking them....try cutting 2 out at some time of the day....see how you cope...I ended up just having them when I went to bed then taking none at all unless I got bad pains.

Good luck as well....it does get better over time.

Mine was done last year and I still have not mastered the eat little and often part

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Awwww thank you so much. Really helpful. I can handle the pain. Its the cough thats killing me. How are you with alcohol? Still breathing so thats a bonus

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I am not a big drinker... I have no problems with what I do drink...never drank when on tramadol though...i would imagine it could be fun...well a cheap night out...lol... I can eat and drink anything just with the eating is has to be controlled...eating little and often....which I still get wrong...yes at least we are still breathing.

Have you got a McMillan rep as i didn't at first but the Chemo nurses kept asking me if I was getting any benefit but I didn't think I would get any as had too much money in the bank...not a great amount but toomuch to receive anything I thought. I contacted McMillan rep who I knew from looking after my mother...she used to fill all her forms out for her, anyway I contacted her as she explained there are a couple of benifits that I could apply for, one was ESA which I got, it only lasts a year I think but it has been a great help and the other was PIP which even though I had enough points they said I could not have it as I wasn't going to be ill long enough...i have appealed but don't hold out much hope as reading in the news people who are really ill but can stand up or make a cup of tea have been refused it.

It's worth asking about.

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wow thats crazy. I just spoke to my surgeon. He wants to do another stomach stretch on me tomorrow. I hate anything down my throat

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I was having stretches twice a year, My consultant said I am going to do the biggest one we have, (this was two years ago (I was put under as I don't like things going down my throat) He had neve used it before, and was wondering if it would split the Stomach tube,( it didn't ). it was the best thig that has happened. nothing getting stuck

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Ahh that’s amazing. Good for you. I’ve had 2 stomach stretched in 3 weeks. They did 20 mm each time. Was yours bigger than that? Yeah I hate anything down my throat. My first Endoscopy was brutal. As I was going out that night, I opted for just the throat spray. Never again. He found the Tumour when he was down there and started cutting bits off it. This continual cough is killing me xx

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sorry can't remember what size, it was the biggest they have got, don't worry if they say it might split, they can fix it if it does, But it made such a difference to me. I had my op and all my stretches at St Thomas's in London. and could of not wished for better treatment. xx ( I now can drink a half bottle of wine with my dinner a couple of days a week without any sickness. one thing don't eat anything after 19:00.as it can cause problems, and yes you do get better but a long haul it is.Take care, Tony.

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Now your talking. Half a bottle of wine would be fine. Ha ha yeah I’m so exhausted with the coughing. When I do get to the ‘barfe’ Point. I’m bringing up thick frothy stuff. Horrible x

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I can now drink up to 1 pint and a half of beer a day, mainly at lunchtime, the fizziness helps and makes me burp, something I cannot do otherwise. Yes little and often is what is required, really enjoyed supper last night and was tempted to eat a bit more but resisted. Still had a touch of bile but not much.

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That’s great news. I’ll try a pint and a half of Wine. I’m doing my stretch today. I really hope it helps my food capacity xx

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I still have a slight cough nearly nine months after the op with some slight mucus, due no doubt to the rib removal and the lung being deflated during the op. As my wife pointed out this morning the internal organs take a lot longer to heal unlike wounds which get more oxygen and can be treated. Went for a long walk with the Labrador this morning in bright sunshine and gave thanks for being alive.

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Ahhh ok, I wouldn’t mind a slight cough mate. I literally can’t talk without having a coughing bout. Really annoying but yes. I’m glad I’m still breathing and I’m sure it’ll get better

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Hi John

I guess it takes us all in different ways, I guess I was lucky regarding the pain, I stopped the Paracetamol when I got home and to be honest had very little pain from the moment I came round. Just take the odd couple now and then as needed.

3 months on from I.L. and I have found for me, to eat a good breakfast, 1 sausage, beans, mushrooms and tomatoes sets me up to lunchtime and I am better not having a mid morning snack it seems to reduce the number of times I dump, ( best so far is 4 days 'dump' free).

I also did not have a big problem with coughing so not able to advise there, but hey you are still here, still going on life's journey with uphills and the odd freewheel down, we have to make the best of what we have and you are without doubt better off than some.

Stick with it and good luck, most say that with time things get better, we have all had a major operation and time will help our bodies to adjust.

Jeff

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Hi Jeff, thanks for this. I nearly called an ambulance yesterday. I had just had one of those ‘protein’ drinks the gave me from the hospital. I started sweating and feeling really sick with really bad stomach cramps. Can you tell Mrs how your dumping manifests itself please. It subsided after about 30 mins. I called my nurse and she said those drinks can cause dumping x

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It is probably my own fault by eating just a little too much, or, if I have eaten 1 block of chocolate too many, firstly I feel my stomach is full, this lasts for about 1 hour, then I start to get noises in my guts and a swelling there, this then turns into the actual dump, which for me can be like turning a tap on, not once but 2 or 3 times, it's not nice but it does make me try not to over eat. I have a good appetite and seem to be thinking about food quite a lot.

From discovery of the tumor to now I also have lost about 3.5 stone and will not gain the lost weight, but am happy with the slimmer me ( 11st 10lbs).

I understand that this dumping is caused in part by either too much sugar OR to much carb eaten, and your body floods the stomach with insulin to rid it of the excess, I am trying to eat more protein, for lunch today I had 3 strips of streaky bacon and a slice of brioche eggy bread made with 1 egg, salt, vanilla extract, cinnamon and black pepper, cooked in the fat rendered from the bacon which I seem to eat better if it is crispy.

Oooops have to start a cook book !

Hope this helps

Jeff

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Awww thank you for taking the time Delia. I’m sitting in the waiting room of John Radcliffe in Oxford waiting for my second Endoscopy to stretch my stomach some more. God I hope it works. My dumping caused me to feel sick, faint, sweaty and massive stomach cramps . No No. 2’s though.

Good luck Jeff

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I drink those protein drinks very slowly ie over the course of say half an hour, otherwise they cause dumping for me. Its because they are full of sugar.

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Thank you so much. I thought it might be that. Great that you can confirm. I did drink it much quicker than a usually do. I’m glad I can still drink them as it gives me 300 calories towards my daily intake. Take care x

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Hi John,

My husband is 7 months post Ivor Lewis op and his worst problem was the coughing! We tried everything... were told it "was not related to the surgery" by the surgeon. But I can't see how it was not related. Anyway, he used a combination of nasal sprays and codeine cough medicine, and even took allergy med to combat the post nasal draining and the mucus discharge. It was like yours, he coughed whenever he tried to talk or even moved around a little. He started to improve (less coughing) about 8 weeks post op, but really stopped coughing a lot about 4 months out. He has always had horrible allergies and post nasal drip seasonally, but the cough after IL was debilitating. Hang in there. Take whatever helps for the time being! It will get better!!

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Awww thank you Nancy. I’ve just had my second Endoscopy to stretch my stomach. I’m hoping that will help. I’ve just bought some codine cough Med so I’ll try they. I’ll also try the ‘hay fever’ meds.

Yeah I guess it’s just a waiting game. I’m just very impatient. I have to understand that I’m only 6 weeks in.

Thank you x

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Hi John after 3 years I still cough especially when eating, as soon as I swallow I cough, just cant stop it.When I bend over the sink to brush my teeth this also makes me cough.

I now know that this has something to do with the Vagus Nerve! apparently this is a massive nerve connecting to all sorts of organs. When I spoke to my consultant about it I was basically told "Get Used To It, it aint going to get any better" I felt better, much better before my op! but, I would probably be toast by now as it was at stage three.

I think the consultants hear the same story so often they become indifferent to our plight?

Best of luck mate.

Ray

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Hi mate, thanks for your reply. It’s such a pain isn’t it? So embarrassing when in restaurants. My whole life revolves round talking and giving lectures. Who wants to hear an hour of coughing. Oh well. I just hope it gets better. Thanks mate

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Ah yes, restaurants! a word I am familiar with but "NEVER EVER" go there any more! when I first had my op a choked and gagged continuously on EVERY mouthful.It really was my worst nightmare, I really thought I was going to choke to death after surviving stage 3 cancer and the horrendous surgery? I am now at a point after three years where I occasionally gag and choke but it still always hurts when it try's to go down.One of the worst things is when you swallow hot food and it doesn't go down and it actually BURNS the back of your throat because it isn't going down............Its a worrying experience as this is not natural?

It seems like a lot of people who have had this op sufferer with similar problems? I am still a little surprised to be suffering with swallowing problems "After the op" I actually thought this problem would have gone away after surgery? There are a lot of things they dont tell you before your surgery and its just pure luck if you get away with some of post op problems?

Good luck

Ray

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Awww that sounds awful. I’m 6 weeks post op so hoping it’ll settle down. The cough is continuous at the mo and it’s pissing me off. Hope yours improves x

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4 years out and get cough occasionally but almost certainly in my case due to reflux, I suck a couple of gaviscon tablets which does help a lot, but I guess everyone's different

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Great I’ll try that . I just can’t stop coughing. I cough so much I’m sick and loads of pile comes up . Sick of it but I’m only 8 weeks in

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Hi there Rayslife,

here is the good news the Cough does start to ebb normally led to being sick and bile.

since I have had two years ago I had the biggest stretch you can have, and apart from a couple of coughs followed by bile and sickness, (My fault for not chewing enough) I have not coughed at all. (touching wood at the moment). but I am 10 years post op and feeling better and better,

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Really interesting. Do you know how big you had? I’ve had 20mm twice now x

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Hiya John

I had the ivor lewis op 12 months ago and like you i had a cough , you have to remember they had to deflate one lung to do the op ,you will lose that cough quite , soon all the best for the future

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Awww thank you mate. It’s driving me in sane

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Hi John

glad you are doing well. Just logged on to post something and saw yours.

I am nearly 5 months post-op - I coughed alot at 12 weeks and turned a significant corner when the GP changed my PPI to lansoprazole. The coughing is rare now. I am not sure if it was the PPI or just time that was the healer but like you I only had to breathe in and I would cough ... for ages. After meals it was awful too - my family called it my cough-a-thon.

I hope it subsides for you too - I read somewhere that there are cough sensors in the throat, trachea and oesophagus so my guess is maybe some were disturbed after surgery. The beauty of the human nervous system is that when nerves are triggered alot and have no real purpose...the brain tends to zone them out eg like with tinnitus. The brain can only cope with certain things at once, which is why playing computer games is good for chronic pain as the brain is distracted. I think my brain got bored with the coughing and just doesn't react as much now ... I still cough if I eat too big a mouthful without adequate chewing but it is rare. It is REALLY annoying and I sympathise but I think it will improve for you.

Are you on any PPI meds? Reflux sometimes causes the cough so maybe worth a chat with your GP.

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Awww Thank you so much for your reply. Yeah this is really getting to me now. What is PPI? I'm on Omeprazole. Is that any good?

I need to talk in my business but I can't get 2 sentences out without coughing.

Really appreciate your reply

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Hiya I started on omep in Jan but post op it didnt seem to be working so I got changed to lans which is a bit stronger. My GP described omep as the ford fiesta of PPIs (proton pump inhibitors), lans is the BMW and nexium the Rolls Royce.

There is alot of concern over long term use however the design of earlier studies done did not account for whether patients on ppis smoked drank or had other issues. Most ppl on PPIs do have other stuff going on. While everything is settling I'm taking them and having regular blood tests for iron, vit D and calcium to check everything is ticking over.

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Awww that is really helpful. Thank you so much. This is driving me insane

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