Ivor Lewis Operation : Hello my husband... - Oesophageal Patie...

Oesophageal Patients Association

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Ivor Lewis Operation

Carisbrooke-24
Carisbrooke-24

Hello my husband had just had an I L and is now 5 weeks post op. He is suffering with the oesophageal cough has any body got advice on how long this lasts .

Also weight loss he has now lost 2 stone in weight now 10st 2 lbs with a height of 5ft 10 makes him very thin . Has any body got ideas for food to gain weight .Guess it’s a long haul .

22 Replies

It's very early days after your husband has had his operation. The cough is normal and the majority of experience this after such a serious operation. As far as weight loss is concerned again this is normal. After my operation I lost over 2 stone and now also weigh 10st 2 and am 5ft 10 This has been the same since my operation whatever I eat and that was 15years ago. It's nothing to worry about apart from getting a new wardrobe.All the best to your husband

Phil

Thank you

Hi there, yes we do get a cough or extra breaths it’s where our lung is collapsed during surgery. Did the physio give him deep breath exercises. The weight does come off but will level out. Eat like a baby but add high fat things if he can tolerate. 6 small meals snacks over the day . It is like weaning building up . Unhealthy snacks are not off limits. We do go off some foods but you do get back to eating them.

I lost 3 stone but managed to put back on 1 stone.

Good Luck for his recovery.

Debbie

Carisbrooke-24
Carisbrooke-24 in reply to kiddy

Thank you Debbie

I agree with the others, cough and weight loss exactly the same.

Try not to you worry to much about the weight loss and don’t try to force food. Eating becomes a real love / hate relationship because we miss how it was but can’t eat anything like we used to be able to. I am now two years post op and it is slowly getting better but it’s a big recovery.

Keep going and all the best.

Hi Carisbrooke-24I had an IL 8yrs ago, I was advised to eat high fat foods, always to have a muller rice to hand, if I had anything creamy to have clotted cream with it or double cream, to have butter instead of spreads, basically anything that you would avoid normally, I hope that helps a little.

Good advice, I had my operation over 11 years ago, managed to put on weight before my op, from my normal weight of about 13 st (6ft) i gained almost 2 stone so when I had the weight loss (around 30% of my body weight) I came to around the 10 st 6 mark and was regarded as 'skinny' but over time I have managed (mainly due to high calorie intake, eating still every few hours including through the night) to get back to around 12st4 which makes me about right. It has taken a long time and I have a policy that if I fancy it I eat it- if it reacts then I dont eat it again for about 6 months then try again. I have been very lucky and now can have chocolate, cream etc etc but not coffee or anything with the least bit of spice in. It is a learning curve for us all as we are all different so my advice is try EVERYTHING once (or twice) and just enjoy whatever you can eat. I found the hardest thing to begin with was getting my head around the fact that I will never feel hungry- even now if I am busy I can easily miss 'meals' small and often is the key :) best regards RAy

Janashlin
Janashlin in reply to rayw55

I love that you are 11 years post op! Congrats

My husbandhad his IL 9 years ago. He is nearly 86 and absolutely fine. It is like feeding a baby for a while and he used to keep the Fortisip to take when he couldn't face real food.

But eventually he could eat anything, still in smaller quantities and even now has a gap of 30 minutes or so between courses - easy in lockdown, less so if having dinner at friends' houses but they understand.

Good luck to you both.

Thank you for such helpful information my hubby is 76 years old but has been very fit this has hit very hard .Life changing really .

Janashlin
Janashlin in reply to Rsw1fe

Congrats on 9 years post op! Gives the rest of us great hope.

Hi I agree with all the comments above .. all of us are different but protein based foods worked for me and helped me with my energy levels . I’m 2 years post op and have regained all my weight ( have to now watch it) The biggest thing for me is to be kind to yourself ... don’t try and rush or set times on recovery... when they told me it was major surgery I thought yeh right... I’ll be back on my feet in no time.... well.. it IS major surgery so take it nice and steady.

2 yrs this week for me .. I’m 55 yrs old back running my business but I still need to take things steady, still need lots of sleep and still need to monitor what and how much I eat. I can’t eat and drink at the same time but I eat most things..wishing you both all the best x

It's very early days yet one year on from il and I still get the occasional cough. I lost 2and a half stone. I'm now fairly strong and have good energy and have a maintained my weight and think I'm doing OK for my 74 years Ask his dietitian about supplements I was given drink and help with high calorie food, talk with his upper Gi Cns. You can also go on the OPA website and print off leaflets with recipes and advice and if you have problems printing phone them and they will send you the relevant information you need they are very helpful.

Good luck to your husband with his recovery its a slow process to begin with but just it does get better.

Take all the help that is available out there and there is always help and support on this forum everyone is so kind.

Good luck for the future.

Loraine

Thank you so much for all the advice it’s a steep learning curve and no quick recovery from this .Chris E In

Thank you so much for all the info on I L procedure it’s been so good to read and useful information. It’s certainly life changing but hopefully with a good outcome long term. Chris

All sounds normal. You need to make sure he eats to maintain new weight. My dietician advised me at first to concentrate on protein and calories. Opa have dietary advice and, if you havn't already the hospital should have a dietitian, or GP practice. I had a dietician involved automatically from diagnosis onward

Thank you for your kind advice have now got some Protein Shots to mix in with his meals or desserts . Chris

Cheese on crackers and ginger nut biscuits worked for me when I felt sick all the time post op, back to normal weight after about 2 years, 8 years post op still working at 72

Ginger nut cookies for sure !

Hello Carisbrooke,

I am also caring for my husband who had IL surgery 9 months ago. He is recovering very well but his meals portion remains small. Literally eating every 2 hours.

Initially, I gave my husband 6 small high calorie meals. It is important that the amount has to be small ( I call it baby portions) try to give him food with high calories and see what types of food he can tolerate.

If he can tolerate diary, then ice cream, rich desserts, food with butter, cheese. At this stage, the calories matter whilst it may sound unhealthy. In fact, I was eating a bit of what I was giving my husband. I was putting on weight while his continues to go down.

Please note that losing weight is not altogether negative as long as he is able to eat high calorie meals. Even with being able to tolerate eating high calorie foods, my husband still continues to lose weight. Before the operation he weighted 89kg, today he weights 70.4 kgs but that is alright as he is progressing well with his recovery.

He still has to rest after each meal (to avoid dumping) and isn't strong enough to do the things he would like to do around the house. But that will eventually be better as time goes when he is comfortable enough to do some light exercises.

I wish you and your husband all the best on this journey and I am happy that you have found this site. I too was overwhelmed at the beginning but now I am able to share my concerns in this site which is a big blessing.

Take care and stay safe.

Thank you so much for your comprehensive email .I have been doing the 6 meals a day as you say baby meals but high calorie.This goes against the grain as my husband was on statins !! Cheese ,cream all high protein food .We are 6 weeks post operation today so hopefully small steps to a full recovery. We just need to lose the cough !! But again time frame will see this hopefully decrease. Thanks again love this site you don’t actually feel alone . Chris

My cough hung around for the first two years. Decreased for awhile and came back. I used to say it was a reminder of how many spots in my body needed to heal because everything felt like broken glass with each cough.

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