Hi all, my husband had his Ivor Lewis operation 2 months ago at derriford hospital in Plymouth. He had a horrendous time in hospital and developed a leak 6 days post op. He was very poorly and spent a week in icu then a further week on the ward. Since returning home he has lost 2 stone and finds eating anything challenging. He is going back in hospital for his third dilation last one hardly made a difference. He is so anxious about eating as everything gets stuck and he has to balk it back up. Also he has a lot of mucus to balk up as well. Is this common after this operation and will he be able to swallow normally oneday. He longs to chew something solid and just be able to swallow it and keep it down . Would love to hear from anyone who's had experience with these problems and come through the other side. Anything positive might help my husband as he's feeling very low at the moment. This is my first post many thanks Helen.
Worried about dilations.: Hi all, my... - Oesophageal & Gas...
Worried about dilations.
I have not had dilation procedure or even heard of it befour your post .. but i read your post and things ringed true with my gut throat symptoms problems of late.
i am on permanate antibiotics and have tried everything to help with reflux and lump feeling when i eat.
I tryed taking my antibiotics befoure after food and that never cured it also tried few hours befour and after and that did nout to help.
But what i do know gut acid can be bad and cause inflamation refux like you describe as i was suffering bad with it.
But mine was caused by antibiotic use .. I have started taking Beneffect B6 food supplement capsules and i have noticed they have settled lump in throat when i eat and rank reflux .
Obv i would talk to your own doctor befour you tried anything BUT they did work for me.
lloydspharmacy.com/en/benef...
Thank you for your reply, I am sorry to hear you are suffering a lot post too. I will tell my husband about the beneffect b6 supplement as he constantly feels like he has a lump un his throat. Where they did the new join after his operation, keeps closes over to leave him with a 8mm opening he can barely take liquids. He has to go into hospital were they dilate the opening using an endoscope and a balloon but can only dilate it to say 12mm as they don't want to do to much at once as it may cause perforations in the new join. we are awaiting a call back today about him going back in for another dilation. Very exhausting times as he has no energy to do much. Thanks again and hope you start to make good progress.
Hi, I had the same problem as your husband I had the leak and ended up back in hospital for 3weeks then had numerous dilutions, it is along journey unfortunately he may not be able to eat some food again the positive side is my operation was 1993 and I'm still here.
Hi Olive14 - My husband had a leak six days post surgery, spent three weeks in ICU and a further four weeks on the ward. He too struggled to eat solid for and had three dilations but he did overcome the problems and went on to eat soft food. My liquidiser was used constantly and I began to learn how to make him very nutritious and protein rich soups with added protein powder. It was summertime so I always added fresh fruit to ice cream, yoghurts, custards and included half a bottle of Fortisip, before giving it all a good whizz. Any surplus could be frozen into ice lollies. Some people don't like Fortisip to drink but by making it into ice lollies, it is far more palatable. I was very mindful that I had to evaluate just what he ate (not too much sugar) as he suffered "dumping syndrome" every day which he did learn to live with and manage. Very gradually his weight stablised and 18 months after his surgery he managed to put on two pounds!!! It was sheer delight to see those scales stabilise and then move up a fraction after he had suffered a four stone weight loss. I do hope your husband begins to improve soon but it can be a very, very long journey. Good luck to you both.
Thank you kindly for your reply. Your poor husband has be through hell. I will take on board your food advice and try and introduce the fortisips in other ways as he cant stand them. I think he drank them a much as he could pre op he has a mental dislike to them, they make him want to be sick poor thing. I feel so guilty being able to eat when he cant manage hardly anything.
I had my Ivor Lewis op in Nov 2012, after doing well and getting Out of critical care, I became seriously ill with a whole host of things under the general heading of "Sepsis".
Thanks to the wonderful team at the Royal Marsden in Chelsea I managed to survive and left hospital after a month. I to had problems eating, my feeding tube wasn't removed till the following March, but after my post op chemo I gradually started eating more and more and got back to work at the age of sixty five as a plumber lifting heavy radiators and boilers etc and have been doing so ever since, in fact I do all the things work and leisure I did before my illness but you do have to pace yourself with eating little and often, be careful with sugar and nothing to eat two hours or so before bed time.
Don't give up and good luck
Micky T
Thank you Micky T for your reply. You had the most dreadful time after your operation. Your words of hope mean the world to me. To hear you doing so well after being so ill is very positive indeed. I will share this with my husband as I am sure he would love to hear about this. Sending you blessings Helen.
Hello Helen, I had a great deal of difficulty in keeping anything down but unlike your husband, no real problems in swallowing very soft or puréed food. Tablets were the worst things to swallow as they're dry and hard, they always got stuck in my throat unless they were tiny or broken into three or four pieces. My biggest problem was the amount of thick, blancmange like mucus that I was bringing up after eating and especially at nightime. Every night for several months I'd start coughing after going to bed, then within an hour to an hour and a half I'd be wretching up quite large amounts of this awful gunk. After roughly three months I had to go back into hospital as I was becoming dehydrated, I was there for nine days 'being observed' and rehydrated via a drip. Apart from that I was given anti sickness medications - none of which worked. On returning home I eventually managed to eat and retain small amounts of soft foods and perhaps surprisingly, dry foods like crackers with cheese went down very well. The mucus problem stayed with me for MUCH longer - over two years, but I didn't become dehydrated again. I had my op in March 2012 and aside from not lying down or bending down (fingers crossed, when I say this) I don't have any problems 'as long as I don't try to eat too much', having said that I still find that I can't always enjoy a hot drink after a meal, it just makes me feel bloated and I can't stop belching. Occasionally I may still cough up a little mucus but that's usually only if I have a cold. I think it just takes a long time for the body to get used to the new 'plumbing' as it were. I was told that it would take me six to nine months to fully recover- it took me a little over two years but I was 72 when I had my op.
My good wishes to you and your husband, I sincerely hope that things will improve for him before too long.
Thank you kindly for replying. You mentioned having lots of gunk you had to bring up,That is the same with my husband. He describes it as it is like bringing up a jelly fish in texture, not very nice at all. He continues to loose weight and has gone down from around 13 stone to around 9 stone. He feels very depressed about the whole eating thing as he was unable to eat for months befor having his tumour removed, so is very down that he is back being unable to eat. What a dreadful thing this cancer is. It seems like everyone has a different recovery and after reading the replies on hear to my concerns I am much more hopeful that things can only get better. My you continue to have good health blessings Helen.
This is a quick reminder about losing weight after this surgery. There is a poll that shows that some people do lose what seems to be an awful lot of weight. But things do work out all right in the end, even though it does get very irritating when people keep commenting about it, and even say things like 'I wish I could lose that amount'!
If you have a leak, the whole experience of recovering can seem to be a very bleak process, and there are times when you feel that you are making no progress whatsoever. The body does take an extraordinarily long time to recover, and you feel very weak and helpless when you are going through it all. The lungs and chest cavity suffer a great deal, and this takes time gradually to heal, with gentle, progressive exercise being a key thing, and not worrying too much if a couple of bad days happen along the way.
As far as the swallowing and digestion is concerned, it sounds like the food may not be clearing the bottom of the stomach? There is a pyloric sphincter there, and stretching this can help. For some people the process needs to be repeated a good many times. The surgeons will tend to stretch it only a little bit, and then increase the degree to which this happens over a whole series of procedures. This seems very frustrating, but it is better not to overdo things because the risk is that you can get bile running up if the pyloric sphincter is too loose.
Meanwhile try and maintain nutrition, vitamin and mineral levels with a liquid or semi-liquid diet. Beware of food that has a stringy texture or skin that might create a blockage, and stay away from sweetened food that may be likely to create an insulin spike. This is unwelcome advice if all the things you are looking forward to eating come under this category!
The mucus might be tackled by domperidone, but you have to be very careful about following the instructions carefully and taking it well before the 'meal'.
Helen, you are both going through the normal worst period after this surgery, when it is difficult to believe that things will get better. You probably feel that whatever you prepare and offer him is completely rejected because he does not feel like eating, and naturally you feel that intake of good food is a sign of returning to proper health and strength. There is a natural feeling of anti-climax after all those weeks of appointments, hospital visits and all the anxiety about your husband's progress, and it can be really difficult to understand what is happening and why he does not feel better more quickly. There is mental track you follow as well as the medical one, and sometimes it helps to talk everything through with a trained counsellor. About 25% of cancer patients and their spouses need this some months after the discharge from the main treatment, and it can be surprisingly beneficial, even for those who are sceptical about it. I think you are entitled to feel low after everything you have been through, but sometimes it takes a special effort or session with somebody else to get you firmly back on to the upward track. But the process of eating is connected with quality of life, and it is truly miserable when you cannot enjoy eating together. It gets better for nearly everyone else so there is no reason why it should not be so for you as well.
Thank you so much for your reply, what you say makes complete sense to me and I feel more hopeful from reading it. Bless you Helen.
Hi, I had my op in January 2011 & had various problems to start with, like the bringing of jelly fish like substance as your husband describes. It also took nearly 12 months for me to get over the op!
I am now nearly 5 years since I had the op & I believe a lot has changed in that time with how they treat it, I also had my op in Derriford Hospital, Plymouth. At first I, like your husband, could not eat very well & it had to be either sloppy food or baby food. Even now there is still certain foods I cannot eat, but it does get better in time, & your husbands op wasn't that long ago in comparison. If I over eat even now, I still have to visit the bathroom after. I also had to have three stretches before it worked for me, but the last one, some 6 months after the op, did the trick.
I am afraid we have to watch what we eat for ever after & find out by trial & error what doesn't agree with us.
I just take only one pill a day now, Lanzaprozile first thing in the morning. The thing to look at is that we are still here & the outcome could of been a lot worse.
I hope this helps & really hope your husband recovers in time, I'm sure he will
I hope this helps
Cheers
Jan
Thank you so much for your reply. I am pleased to hear things do get better but everyone's experience will be slightly different. See what happens after his third dilation would be lovely if he gets a few weeks grace in-between and can get some food inside him. I hope you continue to do well bless you Helen.
Hi Helen
I really hope your husband improves soon. It is such a long haul after this type of operation, a very slow recovery for most people. I remember vividly thinking I don't know how Im going to get through it as everything went straight through me and I was so sick, (still have to be careful now as intolerant of many foods). I couldn't believe that the day would come when I could eat without being sick and visiting the bathroom immediately after, but it does get better. I didn't have a leak like your poor husband but many other problems for the first 6 months particularly then gradual improvement, although still problems with weight loss and absorption. I'm only just over 6 stone, so hang in there. I am a year post op and have had 4 pyloric dilatations and was quite ill prior to each 'stretch' but each time there has been an improvement for longer. I really wish your husband well and you Helen as you are watching all of this and it impacts you too. It will get better. This site is amazing and it has given me huge help in my darkest hours. Good luck and best wishes.
Oh dear you have been through such alot bless you. Its good to hear about your improvements and I am staring to understand it can take along time to get there.your reply as helped me alot and I pass all the messages I get on to my husband and they are helping him get a clearer picture of the possibles that might happen. Thankyou for your reply. Take care Helen.
I had my procedure Oct 31, 2013 and could not eat any solid food what so ever and lost 16 stone / 100 pounds? (I am Canadian) I had to have 14 dilation's / stretches in total my last one was a year ago November 2014. Gradually I began to eat solid foods and by June 2015 I could eat pretty well everything the same as before the esphagectomy. Hence I have gained most of my weight back but that is another issue entirely. Your husband will get back to normal, I hope he doesn't feel defeated as I did frequently when I was going through it. There is a light at the end of the tunnel and being cancer free is the prize.
Thankyou kindly for your reply. I'm so sorry to hear about all you've been through and was pleased to hear after all your dilations you can finally eat some solids. I can understand how despaired you must have felt whilst going through all that. I guess my husband just thought once the tumor was cut out he would be back to eating before long. He had months pre op where he could barely eat a thing don't think we really understood how life changing this operation is. Hoping and praying after this dilation he gets some grace and is able to get some food inside of him. There does seem to be light at the end of this very dark tunnel. Bless you Helen.
All that folks have written is, give or take, par for the course.
Do try to get your Husband interested in reading EVERYTHING on this site for himself - it will help him take ownership of his new body and guide it back to somewhere he will be comfortable with. He will find that our shared experiences are a great comfort and relief from the anxiety that is normal and natural with the bewildering symptoms presently overwhelming him.
I started down this track twenty five years ago. Today I have just done two hours logging with a chainsaw followed by a spicy Mexican dinner, complete with beer and tequila. Not bad for seventy one and now I am going upstairs..............................!
Yes, I suffer but even after so many years I can still feel and see a continuing process of gradual improvement.
Your Husband's greatest aid is a marvelously supportive wife. I couldn't have managed it without mine.
Lol thanks for replying gutless wonder. Love the name by the way. Great positive reply will certainly get my husband on board this wonderful website.
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