Hi, I wonder if anyone can offer advise, my husband is about to have a oesophagectomy ( they are removing 2/3rds Oesophagus and and 1/3 stomach) next week.. and I'm very worried all will be well, they say it's an 8 hour operation and he will be in hospital 6 -10 days… after that when he is out I am wondering how well he will feel? will he be able to get out and about, eat? or will it take a long time to do those things, is sleeping problematic ? I have asked a few questions but never get any real answers as yet, maybe when he is discharged they will tell us more… I am just so worried for him , he is 63 and always been quite fit.
oesophagectomy: Hi, I wonder if anyone... - Oesophageal Patie...
I had my oesophagectomy 10years ago aged 57.It is a serious operation but your husband is in good hands and will recover.It does take time and his eating habits will change to eating little and often Sleeping is the same but the majority of us need to use 3or 4pillows to prop us up.But we are all different and get
Sorry I pressed the reply button by mistake and meant to say we get use to these changes.He will get back to his fitness but it takes a long time. With me it was approx 18months.You will never gain your previous weight but that's not a problem.
if you need further advise please contact the OPA
The procedure is life-changing but in my estimation, not all to the bad. I underwent an Ivor Lewis for OC in June of last year and was out of hospital after six days. For a couple of weeks, the process of showering and drying down would leave me so exhausted I'd need to lie down to recover for 15 minutes. I'd then get up and eat half a Weetabix, a little oatmeal or a few spoons of scrambled egg. Nights were plagued with bile reflux, regurgitating oily, burning fluid that caused coughing and excess phlegm. And now, I feeler fitter and better than I have for perhaps 20 years: I've inevitably lost weight (I'm the size and shape I was at 29!), but can eat anything and everything I want - just little of it. As for the reflux, one develops strategies for this. Wedge pillows and propping up the bed and eating a good few hours before retiring help; but for me, Tung acupuncture turned my recovery round, enabling me to reduce my dose of PPIs to 15mg every other day. I haven't used any pain relief for four months, though intercostal rib pain can nag some days. This forum will clearly demonstrate that there are a multiplicity of recovery paths, not all of them easy, but united by that qualifier - recovery. Your husband - and you - are facing a major event but it's designed to make him well. On a practical note, do pack ear plugs for when he leaves Critical Care for a general surgical ward in hospital. It will enable better sleep, essential for recovery!
Your husband is one of the fortunate minority able to undertake the surgery, which is only ever undertaken with curative intent. The light at the end of the tunnel is already in sight...
I had my Ivor Lewis four years ago this month aged 64. I was back lifting heavy radiators (I'm a plumber) by the following June and I'm back to my usual pre illness weight after often wondering if I would ever eat again.It does take time , some people longer than others but you must keep as positive and active as possible, dont eat late in the day and be careful with sugar and white bread etc which they will tell you about.
When I did start eating again I found things like cheese and crackers and ginger biscuits were anti sickness foods, good luck to you.
There will be a lot of help and advice on here for you. Bridges can be crossed when you get to them as we are all similar but also different The one thing that usually gets forgotten is the part the carer has to play which is vital to recovery, so please remember you are important too.
I also had the whole of my oesophagus and a third of my stomach removed 23yrs ago and never thought I would be still be here writing this all these years later! Look after yourself and tell your husband it is all worth it. sally
It would not be right not to worry about these things. It does look very different when it is all over and you look back in hindsight.
I would say that surgery these days is very carefully done and managed, so even though it seems very scary to the patient and family, you are in good hands.
A couple of things that you might bear in mind are a) sleeping position can be quite difficult. The lower oesophageal sphincter, the valve between the stomach and the oesophagus, will disappear, so reflux can be a problem, especially at night, so people do often find that they have to sleep with their head raised so that gravity helps keep the reflux in place, and b) taste buds do get wrecked, and you may find that nothing you so lovingly prepare will ever get appreciated. This is nothing personal. It is just that his system will gradually have to get used to eating 'little and often', perhaps on a very restricted basis of things he can cope with. Normally this does improve very gradually.
Recovery does take longer than we would ever expect, and is often not in a straight line, but many people do not suffer any undue complications and make an excellent recovery. I think you are wise to think about this sort of thing in advance. It is a test of resilience for you both, and your family / friends.
You may want to nominate somebody to keep other well-wishers informed because this can be very tedious, however well meaning they all are. You will need to protect yourself from the burden of keeping everyone informed, and create some time for getting your breath back. And people can say the wrong thing quite unwittingly.
Try and think of a mental / morale pathway that you will also both be travelling along as well as the medical one. You have to come to terms with the mental side of everything that happens, and learn how to share your fears and thoughts about what is happening regardless of how much you feel the need to protect each other from even more anxiety.
Hello I had the same job done 23 years ago.
Get him to eat little amounts as often as possible he won't feel like eating, As for sleeping don't eat late before bedtime, plenty of pillows to raise sleeping height if not he will get reflux which is very nasty to be awakened by, there are many more issues such as dumpings syndrome so don't overeat, Avoid stress as much as you can take short walks if you feel up to it don't worry about weight loss in time he will recover its a rockey road , don't attempt to work it takes time to get good again. All the best of luck contact me any time yours John
I was in the very same situation 2 years ago. I was 63, good fit, when the surgeons removed 2/3 of my oesophagus and1/3 of my stomach. The operation took 9 hours and I spent 10 days at hospital. Currently my life can be considered normal, I can eat, smallest amounts than before,I can sleep, sometimes in a sitting position because the reflux, and I can do same sports than before, golf, table tennis, speed walking. Please do not forget this is not easy at all and I can say that 1 year or more should be needed to recover the normal life but there are many of us that finally defeat that terrible illnes. I wish you the best to your husband, I am sure he will be writting very soon in this site giving hope to others.
Just a tip re the reflux and sleeping with lots of pillows. My Barretts syndrome means I suffer badly from acid reflux, and I used lots of pillows for years. Then I bought an electric bed off Ebay and now can alter my sleeping position as required. Usually start off at an angle of just less than 90 degrees and move down to about 45 degrees. Wonderful invention - very few bad nights now! I do hope the operation goes well - best wishes for the future.
Very best wishes to your husband and yourself. This is a brilliant site and Alan M's advice is always so helpful. My husband had his oesophagectomy 5 years ago at the age of 77, and truly he leads to all intents and purposes a normal life. Of course he takes the PPI pill in the morning.
We bought an electric bed eventually (VAT free for medical reasons) which has been entirely successful in preventing the dreaded reflux. And he does eat smaller meals than before, plus snacks in between.
When you go to see him after the op., try not to look too shocked to see the number of tubes he's attached to. And warn anyone else who might be going to visit. Just tell him how brave he is. The tubes will come out over the next few days.
I think it's a good idea to be a bit prepared for when he gets home. I bought several small freezer tubs and put in puréed meals like fish and chicken in white sauce, anything you can think of really. It's like feeding a baby to begin with, little and often, and it may be rejected, and he'll get onto solids by and by.
And don't forget that your specialist nurse can be a great support. Good luck!
Well the PPI my husband takes is called Lanzaprazole and as far as I understand it, it's one of various Proton Pump Inhibitors which stop the stomach producing acid which can cause reflux. And according to Google, your Nexium is also a PPI.
People who have heartburn are also prescribed it, it's not just for people who have had an oesophagectomy.
Alan would explain better, but I hope that helps.
I had a similar operation just under 4 years ago when I was 63 although I didn't need to have any part of my stomach removed. Without being too negative this is very major surgery and it will take a long time to recover. It is good that your husband is quite fit as that will help but in the early months it is case of taking small steps every day. Don't try to do much in the early weeks and months as this can impact on recovery times. Think of it more of a marathon than a sprint. Eating will be an issue in the early months and certain foods may now be off the menu. There is lots of advice out there and it is worth joining a support group if there is one in your area. As I said earlier I had my op In February 2013 and within reason I live a pretty normal life. There will be good days and bad days during the recovery process but just keep positive.
Do not follow this link if you would prefer not know the grizzly truth!
But if you had the classical Ivor Lewis procedure then, IMHO, you should have been briefed on this.
Because without this insight you could be at risk from two perspectives:
1) The capacity issue - as is obvious the new stomach tube has a greatly reduced volume - from an original 4 litres down to maybe one cupful. If you fill this up and then bend/stretch/lift there is the possibility of rupturing a seam. This is life threatening. It is very rare but not unknown.
2) Similarly, if you consistently eat to capacity, then over time the new stomach tube will stretch - it can end up up to 5 inches in diameter. This is not the good news you might imagine since, with the pull up it is now in a cramped space high in the chest where, when expanded it rubs on the lungs with undesirable effects.
The latter happened to me. Terrific that I can now eat just one meal a day but at the price of paroxysmal coughing of mucus from the lung and hence, a greatly enhanced risk of contracting pneumonia.
As they say you pays your money and you takes your choice.
There is very good advice in all the previous replies, it does take time to recover and cannot be rushed as the body takes a big hit with the surgery.
One thing to remember is that you will go through a lot of worry and emotions as well, coping with the surgery and recovery of your husband as well as normal day to day life so make sure you look after yourself as well.
Eating habits will change, small, often and tasty will be the order of the day but please do not worry if your husband does not want to eat everything to start with, it takes time to find / get into a routine that works for you, no one is the same so it can be trial and error to start with.
Do try and find a support group to talk to other patients and their other half , or ask us for a chat if not one near you, as talking to others will certainly help and show that both of you are not alone in worrying about something we take for granted as part of our daily life but will seem terrifying for you after surgery.
I am 10 years out and living what I consider a normal life with a few adjustments to how and what I eat.
Happy to chat if need be at any time as are many other patients, please just ask.
Pazhugs. My experience was almost identical, I was 63, (3 years ago) All oesophagus removed and 1/3 stomach. I have read your replies and can concur with all of them. "little & often" being of highest importance. Pain was not an issue, as medication is second to none. Yes it's a long, slow road, and at times quite difficult, but the majority of people live an almost identical life with a few modifications, and those tweaks are different for each one of us. If you can afford it, an electric bed is worth considering, with a note from your doctor you should get the VAT deducted, making the cost around £2000, My life's "best buy", worth every penny. I also bought a television for the bedroom, as i still need 12 hours out of 24 in bed especially during the first year or so, but this all aids recovery. Another plus factor for me was weight loss, i bought new clothes about 6 weeks after the op, then needed to dump them as i lost even more. Finally I'm now "perfect weight" having lost 5 stone, and, its great...! I know it is easy to say but try not to worry. This is a very big operation, they would not do it if the long term prognosis wasn't good. Lastly, remember you have needs also, you need your rest and time just to chill out. Take care, i'll be thinking of you both. Please feel free to contact me should you wish to talk privately. Tel. 01624673063..Mike
My husband had op yesterday and came out of theatre at 8pm last night, into HDU, Surgeon said he lost a fair bit of blood, but is OK, no need for transfusion. Today he has been moved to an ordinary ward, which is brilliant, but he is very uncomfortable and now has a temperature, but they don't seem too worried, Dr gave him more meds… it was not too high under 39, but he looks quite rough at present… hopefully tomorrow will be better…
I really do appreciate your help, it really helps,. x
I was 32 when I had to have a total oesophagectomy, I had chemo first and also go married pre-surgery. I do feel that it has changed me - I can eat a lot less than I used to be able to but can still eat a fair bit now (a starter and a main and small desert). I also had my children post surgery, when I was pregnant with my little girl I found that i could drink milk again (only full fat).
I suppose that my life is focused on my husband and children so those changes have been bigger.