How can I help my friend?

About two months ago a friend of mine underwent an Ivor Lewis Esophagectomy, preceded by chemo and radiation therapy. They removed part of his esophagus and top of his stomach. He tells me that every time he eats now he either gets exhausted or is in terrible pain for about 90 minutes. This is so distressing for him, and for me to watch. I feel so bad for him and want so badly to help him. He lost so much weight from all he went through and needs to gain weight now - says he hasn't gained a single pound since the operation. I'm wondering if anyone here has any advice for him. All I could think of was to suggest experimenting with single-food meals to try to discover which foods he can tolerate, starting with healthy foods that are also good for gaining weight. He says he's going to try eating more frequent, smaller meals. Any advice would be so appreciated. I'd especially like to hear from anyone who went through a similar experience and subsequently experienced improvement in their condition. Also, is there anything I can do to help him? Thank you so much.

26 Replies

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  • Hello Caring Friend - It is very early days for your friend after his operation. He absolutely needs to eat very small, easily digestable meals every couple of hours, chew the food slowly and then rest for quite a while afterwards. Perhaps a meeting with the Upper GI dietician would be a good idea. Very often, after this operation, you lose your appetite and also food can taste different or perhaps have no taste at all, but it's very normal at this stage of recovery. As regards the weight loss, my husband lost a third of his normal weight during his treatment and surgery and his surgeon said that he might not gain much back as that is the nature of the illness but he did manage to put on 6 pounds over the course of a year. I too wanted to do all I could to help with my husband's recovery and I found myself cooking and preparing food constantly for the first six months. Following on from that, he was able to have three small cooked meals a day and four small snacks in between. Bread and meat seemed very indigestible for the first little while although after a year he was able to eat a small bacon sandwich for breakfast which was his greatest pleasure! Recovery can be a long haul and a different life awaits you both but it is surmountable so good luck and please seek advice from the professionals. There are also leaflets available on the OPA website that are extremely useful.

  • Hello Caring friend

    I was told to eat five small meals a day which takes some getting used to but it's the best way'

    I am three years down the road and still find it nigh on impossible to gain weight so as long as you can maintain your weight don't be too concerned.

    I was told to get a new wardrobe to fit the new me.

    Two months is at the very start of recovery and I am sure others will tell you it is a long sometimes tough road back to some kind of normality.

    Hang in there and good luck

    Kind regards Mick

  • Its very early days for your friend - I remember being exactly the same way, every time I'd eat something I'd be on the floor curled up in a ball in agony for ages! My exact words to my poor parents at the time was 'If this is living I don't want to do it!'

    I can recommend to say to your friend:-

    Take it day by day

    Eat ANYTHING and EVERYTHING that sounds good, if they only want to eat bread and butter then do it

    Add calories anywhere you can, put cream in soup, mashed potato, coffee etc, even add a scoop of neutral flavour protein powder to spag bol, soup, stews, cakes anything

    Eat a biscuit / chocolate everytime you have a cup of tea of coffee

    Eat little and often

    And most importantly

    Promise them from me - IT DOES GET BETTER

    And then soon enough they'll have an excuse to go clothes shopping and they'll be smug in the knowledge that they're in the 'I can eat anything I want and not get fat!!' club!

    Seriously though, two months in is very early days and the only thing I can say is to take every day as a new start and it will gradually get better - I was back at work full time (45 hours a week) 5 months after my op and a week after post op chemo finished (I was only 28 though so that might have helped me bounce better!) and now (18 months post op) I'm still working full time, plus going to the gym most days of the week, doing triathlons, walking and running loads, I've been on holiday and I don't even stop and think anymore when someone asks if I want to go out for dinner

    I hope that all helps.

  • Well done you this is a very encouraging post. I was told getting fit post op and chemo is important you have certainly shown the way there congratulations .

  • I can sympathise. I'm 16 months post operation and I still occasionally get washed out after a meal. It has been some time since I suffered those stomach cramps that sent me to bed in agony , almost in tears , but your note reminds me of how horrible this was. The only comfort is that the pain , though nasty , is temporary and , I was advised , unlikely to be damaging. I can only agree with the advice of others. Keep trying. Don't give up. These side effects should decline over time.

  • I was given a booklet "Dietry Advice following Oesphagogastrectomy" which was very useful and there is a .pdf leaflet on this site with a whole list of foods. As others have said it is a long road. After nearly two years my body lets me know if I have tried to eat too much at one time. Don't try to force your friend to eat but remain supportive as it is common not to feel hungry and forget to eat.

  • Hi CaringFriend,

    I am now six years post-op and your comments bring back the memories of how I felt at that time. I can vividly remember how frightened I was at losing weight; I thought I was just going to fade away. I managed to get a dietician appointed to me by the hospital and she put my mind at rest saying that what I was experiencing was quite normal. The important thing is to eat little and often and your friend should eat as much as he likes of the things which he might previously have rejected as being too fattening. The best advice she gave me was to have a glass of sherry before a meal - it worked wonders!

    With regard to recovering fitness, within a couple of years I was back to my hobbies of offshore sailing and walking in hills and mountains, although I have to remind my mates that I can't have a picnic lunch and then immediately walk up a steep hill; it is a question of eating or breathing as the remains of my stomach are now in my chest cavity! I am now 71 by the way and have no intention of giving up these activities.

  • Poor you it so hard as it is for your friend, It WILL get better with time we are all different our recovery struggling with everything learning to live with the new body.

    Your replies below say it all!! You are doing the best thing for him trying to help and supporting him. x

  • Thank you so much, everyone who has responded to my post. I read your comments quickly this morning and will reread them tonight after work. It sounds like this is still early in his recovery and it should get better with more time, and that small, frequent meals are the way to go. I do wonder what the mechanism is that causes the pain. Just wish I could help him more. I appreciate all the responses.

  • Its sounds like the pain your friend is suffering could be what's known as 'dumping' There is some excellent advice about this from the OPA. If this is what it is- I know (and many of those looking at this website know) it is very painful and can last for about 30mins after eating. I found a hot water bottle helped! It was difficult to know early on what caused my dumping but the best advice has already been said here- small amounts of anything he fancies. I am 5 years down the line and can now eat most things (still in small amounts) He is lucky to have a friend like you!

  • champagnelover - thanks for your response. I was curious what the term 'dumping' means in this context. I didn't find an explanation here, but on another website I found this:

    "Normally, food that enters the stomach remains there for some period of time and is broken down, or digested, before being passed into the small intestine where nutrients are then absorbed into the bloodstream. Surgery on the stomach often results in the removal or restricted functioning of this controlled entry and exit of food through the stomach.

    Without this control, partially or fully undigested food moves rapidly, or is “dumped,” into the small intestine. The undigested food draws water from the body directly into the intestine to continue the digestive process. This rush of fluid from the body is the main cause of symptoms related to dumping syndrome."

    What my friend described to me was that part of his esophagus and *top* of his stomach was removed. From the description above, it sounds like dumping is a result of undigested food exiting the stomach (therefore *bottom* of stomach) into the small intestines. Could partial removal of the top of his stomach still cause this?

    When you say a hot bottle helped, do you hold it to your chest after eating?

  • Hope your friend is coping well. When I have had episodes of dumping I got a pain in my abdomen - I put the hot water bottle on my abdomen then not every time I ate. (This initially was suggested by a doctor.) It eased the pain which usually lasted about half an hour. I don't have as many episodes now - controlling how much food has sugar in seemed to help and eating in small amounts. I would think that your friend could be experiencing dumping -

  • My husband is stage 4 so we have no experience of surgery but just wanted to reach out and say I hope your friend finds some relief and improvement in his condition

  • Thank you, hilbean.

    champagnelover - I found the link to the OPA website and see all the wonderful material they have available there now, including detailed information about 'dumping.' Thank you again for your post.

  • Glad you found it - It has been very useful for me. Alan from OPA posts on here and his advice is always so useful.

  • I just wanted to say what a good friend you are and how glad I am your friend has someone like you in his life. I can't offer any advice as I am very lucky and not had any surgery as only have Barrett's Oesophagus at present. However I have other chronic health conditions including a blood cancer and I know how glad I was to have someone to help and support me through tough times. Joining this site provides lots of information and wish you and your friend all best of luck and hope he feels better soon. xx

  • Thank you, Liz.

    I sent my friend a link to OPA along with information people have been providing here. I'm going to send him a link to this forum as well, in case he has any questions he'd like to post himself. These are great resources. One of the things my friend told me was how little the doctors told him beforehand about what he could expect after his operation. Maybe it's better not to know too much beforehand, but it sure is helpful to have the information and support afterwards.

  • Hiya. I am 2 years post op and life is a whole new ball game after surgery. I still suffer badly with weakness, low mood and as for the dumping (god its awful). My worst episode lasted 2hours. Although I have had to cut down on sweet things as its the sugar that's a big problem. Pain relief is a must for me daily, it def bungs u up a bit but lessens my dumping. I too had no idea what lay ahead after surgery. My life is so different now and that takes some getting used to. I now take antidepressants to help with mood and now feel my mood has lifted a bit. Tell your friend to do lots of researching as def not enough known about this, well not at my GP surgery. Its great ure friend has u as support. Good luck for ure friend and keep supporting xx

  • pferries31 - your response came just at the right time. My friend had been doing really well the past week or two, but last night we went out to a restaurant for peach cobbler with ice cream to celebrate his birthday and he had a really bad episode shortly afterwards - could barely make the 5-block walk back to his apartment. We couldn't figure out why all of a sudden he had this relapse, but this morning after I read your comment it hit me - sugar! From all I've read on OPA and here, it seems sugar is a common trigger, and that dessert we had was surely loaded with it. I don't know why I didn't think of it when it happened. Anyway, this morning I sent him a message with a link to one of the OPA documents that talks about the sugar problem and suggests a low-glycemic diet. I'm hoping the suffering he went through last night turns out to be a useful lesson that will help him avoid such episodes in the future.

    I wish you all the best, pferries31.

  • Hi, Caring Friend,

    I had exactly this operation last November, and had big problems with gaining any weight due to nausea and vomiting. At one point this got so bad that I was back in hospital for an OGD (stretching, or dilating the remains of the oesophagus) and because of my inability to eat and keep anything down, it was decided to initiate overnight 'jej' feeding at home. This used exactly the same the same equipment as your friend would have been on when he was recovering in hospital immediately after his op. A nurse from the company (Nutricia Homeward) came round to show me how the system worked, and after the liquid 'food' was delivered it was fairly plain sailing. This gave me the nutrients we all need to stay alive while my problems were resolved, and after a couple of months I was well enough to manage on my own without the tube. I had been slowly forcing myself to eat a little alongside the drip-fed stuff, and this gave me the time to get back to independence 'safely'.

    The only food I could manage at this stage was 'Farleys' rusks, with a little milk to make them soft enough to swallow. Yes, baby food, but it did the job. I found these first small steps to be the hardest, as my body was telling me I 'couldn't' eat, but the use of a little willpower and perseverance worked eventually.

    After the 'jej' tube was removed I continued to make slow but steady progress, and now, ten months later, I can eat whatever I like and whenever I like, but paying attention to what my new digestive system tells me. I often overdo it, but it's no big deal really. I try to modify my diet because not doing so does cause a bit of grief, and to be honest I'm surprised I can manage as much as I do. My weight was alarmingly low post operatively, but I'm now back to very near my normal weight (minus whatever the bits that were taken out weighed).

    I suppose this option does depend on whether he still has a 'jej' tube at this time. If not, it may still be worthwhile asking his medical team about it.

    I wish you, and your friend, well.

    Shack

  • Thanks for sharing your story, Shack. It's particularly encouraging to know that someone who had trouble eating anything was able to make such a comeback. Good luck to you and continued success!

  • Yeah sugar is def one to watch. I have had 4 dilatations since op due to scar tissue and assked for my feeding tube to b removed 2months ago as I was at end of my tether. I have cut back of sugary sweets and have had a biit of a turnaround (scared to say, just incase I speak too soon). Ice cream can b a kkiller caringfriend. I can cope with 1 scoop but anymore and by god I suffer. It has taken me a long time to figure all this out for myself and the more knowledge out there the easier it may become for ure friend. I was at an alltime low a cple of months ago and sometimes wished I could go to sleep and never waken up. Tell ure friend to keep talking and don't let them push u away x

  • Well, I guess I spoke too soon. My friend reminded me that he's keeping a diary of what he eats and it's not sugar. He says it's totally random and unpredictable when he experiences these symptoms. The good news is that these episodes seem to be fewer and farther between. I'm hoping that trend continues.

  • Hi Caringfriend, I am 16 months post op and it is a hill to climb. 2 months is early as many people have said and I recall wishing I didn't have to eat. The hiccups, almost as soon as you eat anything- hold your arms in the air and wait- don't ask why but it works. For appetite, a small glass of wine helps a lot I found. Eat any thing you can - I lost 17 kilos and have regained 2. Whittakers peanut slab helped a lot as it would have been more. Pork Pies are good. The pastry melts, as does the pork, and loads of calories. You can eat healthy later. Pasta I found good too. Just don't over doit. I figured out a portion the size of my fist was all I could eat. I have just started Tai Chi, and I wish I had done it 12 months ago. It would have reduced the muscle loss so much.

    I find that I get pain if I over eat my little portions, I get breathless, and need to lie down

    It will get better and the bad days will get further apart. But it doesn't seem like that now. It is a long road.

    My op was mid July 2013, and 2 months later, I just managed a walk round a large garden and was in agony. I was back sailing in March 2014, and have just finished a complete series of races. I am not as strong as I was, but can I can do it.

    Good luck

  • Hi Caring Friend, I am 6 months post op but had a feeding tube for two months after my surgery but started eating tiny meals and kept eating small meals several times a day. I still eat smaller portions than most and have gained weight. I cannot eat pie or cobbler makes my heartburn terrible so not even worth trying it anymore hope this helps. I drink a lot of Keifer and really helps and does have a lot of protein and buy organic. I am always really hungry in the morn and mid morn so try to eat as much and often as I can during that time period. I just finished my last chemo at the end of august and will do Herceptin until the end of Jan.I can now do hikes up the mountain in my back yard about 45 mins. long I try to do about 3 to 4 times a week and just got back from a week in Tahoe and am going to France in Nov. so forging on and hoping your friend will be soon also. As everyone states in these posts that have been so helpful to me it is learning to deal with a new normal and pretty much just taking more time for me and being more aware and conscious of my being. Hope this helps you are a great friend which is healing for your friend as I know I feel blessed to have so many good friends going through this ordeal!

    Lisa

  • Thanks for sharing your stories, Lucoid and Listen - a reminder that my friend is still in the early stage of recovery and that with time it gets better. It's encouraging to hear about the improvement you both experienced.

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