Oesophageal cancer

[xmasbabe59]

I'm so pleased I looked on this site for information about coughing when I drink and sometimes when I eat. I had an oesophagectomy December 2021 and developed a stricture in February and had dilatation. Unfortunately I suffered a perferation and subsequently suffered a collapsed lung.

My cough got worse after this and more recently have been hospitalised with a chronic lung infection.

Doctors have differing opinions, some (respiratory) saying I'm aspirating but consultant says it's due to oesophagectomy . I had another CT yesterday so hopefully it will show what's happening.

I'm experiencing many of the problems that other members are experiencing which has made me feel more at ease with my symptoms.

This is a great site for people like me who have struggled with their symptoms .

[petercaron]

I am just 5 years post oesophagectomy. The greatest impact I had in reducing reflux and multiple lung and pneumonia’s was to sleep in a recliner. I had an electronic bed previously but I still managed to slip down in the bed at night and experience multiple episodes of reflux that caused various lung infections over the first 4 years .

The last year of sleeping in a recliner that allowed me to adjust head and legs separately was really life changing post oesophagectomy.

Best of luck on your journey on finding out what works best for you.

[xmasbabe59 in reply to petercaron]

Thank you. I've had so many setbacks since my op that I haven't been able to get on dealing with all the problems IL brings. Just been in hospital for 3weeks with chronic lung infection but feel much better now and more able to cope. It really does seem to be trial and error! Thanks for your support

[allthe5s]

This site is a far better resource than asking your doctor in many ways - NOT that I'm discounting what might often be excellent advice from professionals, but here there are real-life experiences of people who have undergone the same things and are living with the consequences of those.

The cough?

I've been thoroughly checked-out (various scans etc) & been told that mine is purely a result of the surgery (I had Ivor Lewis 3 years ago now). Every time I eat, I cough. Every time I drink, I cough and if the drink is cold it seems to make the cough worse. I frequently cough when talking too, and at other times for no apparent reason. For myself the coughing can lead to retching and vomiting. My surgeon says that there can be many possibilities as to why people cough post-surgery, but he suspects that in my case it's because (as he put it) there wasn't very much of my oesophagus left to re-attach.

Your own circumstances and experiences may differ and of course you might well have different reasons for your cough, but speaking purely for myself I have found that there's often nothing that can be done about the various side effects and that I must learn to live with a new "normal".

I hope your CT results point towards a reason for your cough, but don't be surprised if it doesn't.

[xmasbabe59 in reply to allthe5s]

I've already started trying different ways around eating/drinking in regard to my cough. I am realistic though and fully accept it's probably my new normal. Time will tell!

[purplekey in reply to allthe5s]

ditto I’m exactly the same even fumes from stuff make me cough! Wearing a mask makes me cough. I try to slow my breathing down when I start coughing to prevent me retching. X

[carolfluskey in reply to allthe5s]

iI had my ivor lewis over 8 years ago sleep sitting up still cough like mad when i get up and dumping is a regular thing at least 4 times a week I spent money getting a recliner bed but also slip down during the night resulting in heart burn so sleep in a recliner chair but its the cough I hate especially if you in a shop people give you such weird looks still taking Lansoprazole for the reflux wondering if I should stop taking it and find an alternative

[xmasbabe59 in reply to carolfluskey]

Thanks for your reply. It's reassuring to know that coughing seems to be par for the course after oesophagectomy. I had a leak and became very unwell, coughing all the time.

Leak healed after a stay in hospital but the cough remains a very annoying problem although not as bad . I was worried that the leak had re-opened.

Had a recent barium x-ray which showed no leak ( thank goodness) so the cough is just something I've got to deal with.

Otherwise my health is very good and I don't suffer from dumping like I did in the early days. I can deal with it especially knowing that others have the same problem.

This site is a godsend

Many thanks

[Mauser1905]

Hello,

You ahve got nice replies above.

Please also see the OPA Cancer Charity website for more detailed information and these could be availed in printed postal method if you wish.

opa.org.uk/og-cancer-landin...

In the initial months and years the cough may be more noticeable and exact clinical root cause will be challenging as you have noticed already.

Trying honey or water or anything to keep the throat moist may help, also the inside air may be too dry and causing cough, not talking while eating/drinking may avoid cough due to potential choke feeling/reaction, also elevated anxiety/stress levels can trigger the muscle contraction in the oesophagus which may exaggerate the cough intensity or durations.

For IL survivors best tactic is to avoid the chest infection as much as practical and possible.

[xmasbabe59 in reply to Mauser1905]

Thank you. I'll try your suggestions as yesterday was a bad coughing day. Just trying to remain active and focused.

[Singforyoursupper]

I haven’t seen posts about coughing ( haven’t been on this site for a while) so although I’m sorry your problems are needing hospitisation I am comforted that others post oesophagectomy often cough. I put mine down to ‘crumbs’ or residual food (which just won’t move down unless I drink volumes of water which I can’t when I eat. Then mucous forms around it and I eventually cough the whole lot up - not so pleasant in company but it has become the way I manage it. I am three years post op.

I really wish you well.

[xmasbabe59 in reply to Singforyoursupper]

I have more problems with drinking than eating so just wait an hour or so after eating before I drink. I still cough though but at least food doesn't cause me problems. It seems we just have to make the most of it.Thank you for your post. I don't feel so alone since finding OPA forum

[Bien-aimee]

I had a cough off and on and one reason turned out to be aspergillosis. The other, sometimes poor flow through bowel. Movicol helps. Also have asthma, but can't say actual food has been a problem but toast bread, eat crackers , cook meats well - everything crunchy or soft. I do have fizzy water with meals, small sips, but do not produce enough saliva after an oesophagectomy to eat without. My biggest problem early on was that no one explained about getting the protein , sugar, carbs balance correct and I would be sick and have hypos. My daughter suggested using the glycaemic traffic light system - it was such a help. My aspergillosis is well controlled with inhalers, but I have to avoid mould like the plague I don't go near damp soil,leaf mould,apple falls in garden, the woods or even the garden. Fresh flowers in house should have water changed each day and if I go in conservatory which has a grape vine in it I cough ,cough cough ten minutes later. I can smell mould. We have dehumidifiers in every room in the house, plus air purifier. If I try to sweep the carport area, I cough so I assume it's the dead leaves and dust. I had an MRI and I think a C.T SCAN , 12years ago now. I beleive it was exposure to very bad mould in a confined workplace which caused the cancer. Just try to avoid steroid inhalers with antifungal drugs. Leads to depression of adrenal gland function- a story for another day but I almost died. So check out if you have lung problem then get correct treatment . Hope my comments may help.A closing thought -are your iron levels right any surgey on digestive sytem causes anaemia.

God bless from Bien Aimee

[xmasbabe59 in reply to Bien-aimee]

Thank you for your reply. I have recently been in hospital for 3 weeks with a chronic lung infection so this might be contributing to my cough. Due to excessive weight loss I'm also on supplements which don't always agree with me as they're very high carb. Factor in food and drink and I think at times I'm eating too much causing me to cough. There doesn't seem to be enough hours in the day for food, drink and supplement drinks/desserts. Once I'm off the supplements I think I'll find food and drink more easy to manage. Fingers crossed!