Still struggling with fatigue and fee... - Oesophageal Patie...

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Still struggling with fatigue and feeling ‘down’

Has anybody got any ideas on how long the fatigue might last. It kicked in at 3 months post-op and he doesn’t think he’s improving, My husband is trying really hard to eat more and is having a small protein shake once a day in an effort to get more protein in. Fortunately he’s not feeling so nauseous of late but feels really exhausted a lot of the time. For example, he’ll do a bit of washing up, prep a snack, empty dishwasher, then he has a rest for half hour or so, has something to eat, then does an hour or so in the garden, potting up plants, not digging, then he rests again and has another bite to eat. I tend to think this is par for the course but he is not so sure, it makes him feel ‘down’ and I try to encourage him to be positive and believe in himself. When he talks to mates on the phone he is quite positive, but I know he is concerned about how he looks, he has bought new clothes which fit and that helps.

Any ideas and tips will be very much appreciated.

Thank you.

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Hi I am sorry to hear this 3 months seems a very short time after the op some recover quicker than others. I had the total stomach and part oesophagus very low weight and cant gain, food goes straight through and reaching. I am 12 years down the line now and got very fed up and low at times as I thought I would get better. They say time is a healer I have learnt to live with my new body and accept it. Takes time but will come and I am sure with time and your encouragement gradually your husband will find his energy builds up. Wish you all the best and hope it comes sooner than later.

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Thank you x

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Tough I know for you and him be strong! You will get there!! xx

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This is such a major operation and disruption to your digestive system that recovery is slow! I think your husband is doing really well. I had major post surgery complications and my consultant told me it could take me two years to get over it instead of the usual 9 months to a year. Three months isn’t long on the recovery route. I found it to be a shock to have to live a different lifestyle and none of my clothes fitted!! I think your husband has a brilliant approach, eat a bit do a bit rest a bit. Repeat ! He’ll continue to improve! I did have some counselling from Macmillan as I was a bit traumatised by it all. It really helped to have someone beyond family and friends to talk to.

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Thanks for your encouraging words, he is 4+ months post op now and still struggling but together we’re battling on!

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Hi there he should still be taking it easy it is a major op if he had full ivor Lewis and is comparable to a Heart op. The body is telling him to slow down also be careful not to get a hernia. It took me 2 years to recover. Building on your energy each day like walking helps.

He shouldn’t eat too much sugar as this makes you tired to (DUMPING). It is a slow process but he will get back to a new normal.

I am 3 1/2 years post op still need the occasional nap in afternoon. Chemo takes a while also to leave your body.

Best wishes

Debbie

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Thanks for that, it is good to know there is light at the end of the tunnel, but it’s a very difficult journey, we’ll battle hope. Good luck to you too.

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Yes very daunting at first. I never thought I would get back to the level I'm at now. Our lives do change but we are still here. Be it with difficulties. I enjoy holidays and getting out. I didn't return to work as job wasn't suitable. My husband family and friends were a tower of strength.

Good Luck

Debbie

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I go to local meetings three times a year and find the talks very helpful even after 10 years..it took me 15 months to get more energy. one step at a time..Hope your husband can accept it's a slow process..difficult I know but he seems to be doing well

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It sounds like your hubby is doing very well for only be 3-4 months post op. I am 5 months post op but had major complications so only 3 months out of hospital. I am the same as your husband. I have never felt so exhausted in all of my life. I thought I knew tired when I was young and had a colicky baby but this operation is a whole new level. I do a few things, rest, do a few things rest. My back and side are still really sore as well so that wears me out as well. Hang in there, every day takes us forward.

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Thank you, good luck!

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The reason the fatigue has kicked in, is because after 3 months of a very restricted diet, his body has used up all his stored energy. This happened to me. I continued losing weight for 4 years. Eventually I was diagnosed as morbidly malnourished. As I was sick after every meal, I decided to eat whatever I fancied. I may as well be sick for something I enjoy as for eating the recommended food. I had been warned off curry. After my first hot curry I slept right through the night without waking up choking. I lived on curry for the next 12 months and put on a stone (I had dropped down to 5 stone). I then progressed to eating a cooked dinner of mash, peas, broccoli, sprouts and lamb or chicken. I am now 5 inches fatter around the waist than before my surgery. I still have bouts of vomiting but it is only bile and not the food. I hope this is helpful to you. Good luck.

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Thank you, it is really good to know that there is light at the end of the tunnel. It’s all about adjustment - much easier said than done

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Does your hubby have vitamin B12 injections every 3 months? They have made a lot of difference to my hubby's energy levels. Might be worth talking to his GP.

Lou xx

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Thank you, we will ask about that.

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We asked about B12 but he’s fine as didn’t have gastrectomy, also takes a multi vit with B12, at least that’s one thing off the list😀

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Let me tell you I think he s doing great to stay active and continue with his interest. He just went through some of the toughest crap you can go through, it may not have killed him but it tried. I was told it would take a year maybe two to get all the kinks worked out and I am starting to believe it . Keep protein levels up over 100 grams a day and it might help to boost the metabolism and give him energy. At 7 months I felt the same and dr. Put me on depression med to help. I was feeling down and tired and just plain pissed off a lot. I too like my yard work and activities but couldn’t do simple things like I used to . She put me on this pill and told me to take a 1/2 for 6 days and then start the whole. Everyday I got worse and was getting more depressed. I took the whole pill one time and I said that is it , felt like crap and got off the med. Funny thing is when I got the pill out of my system I felt better. She wanted me to start another and I said no thanks. I am again biking and gardening and today beach. It will get better, he seems like the kind of guy that will make it work, be patient, try anyway. Today I left the house early which I hate because I like to be sure how I am feeling before I go somewhere, bring supplies, drink, protein snacks. Has he had any hypoglycemia episodes yet? They are special and from what I understand it is common and you might not understand when they hit. Tired, trembly,nausea, sweat and a weakness that will just bring to your knees . Dextrose, carry it but look into diet to keep it at bay. I journal all I eat all day so I can plan my next meal by my needs. Good luck, he is doing great, a pat on the back and keep up the good fight. Best wishes

Ric

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Thanks for that info, yes, I think he has had some hypoglycaemia episodes and mostly they pass if he rests and has a drink of Pepsi or dextrose sweets. We are also going to talk about B12. Keep going yourself!

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We asked about B12 but he’s fine as didn’t have gastrectomy, also takes a multi vit with B12, at least that’s one thing off the list😀

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Thanks, we are both going o have some counselling, which hopefully I’ll help. Thanks for your support and encouragement

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I see that you tried to keep the protein level up to 100 grams, how did you do that? Any hints and tips will be greatly appreciated. I think he is having hypoglycaemic attacks, for example today he had breakfast ok, then later had mid morning snack of beans and grated cheese on toast, ate it ok, sat a bit, then went wobbly etc and laid on the bed for 1/2hour, also he had a small gasses of full sugary Coca Cola, which helped. He was able to get up and go out and had a couple of little sandwiches and a small cake. Came home, rested, took his pills with a small glass of milk, then the same thing happened again! He recovered and had his evening meal. It is so strange, this is something new, it feels like ‘another day, another symptom’! At least he doesn’t feel nauseous all the time now. Sorry to keep going on, but it is so very difficult, we are trying to keep positive but at times it is very hard. Thanks for reading this and for your positive words....hope you continue to have good health

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Sorry it took awhile to get back to you. I use a program called Lose It. I put in my meals and it tracks the proteins and fats. Some of my worst hypoglycemic spells were after eating carbs for breakfast , cereal toast , milk . I do all my meals twice so after second breakfast calories were up there 350 maybe so I headed out to the yard to trim. Within 1/2 hour I could feel the shaken feeling and was worried I was not going to get back to the house in time. I now start the day with egg over easy , Hamburg 4 ounces and maybe some spinach or onion, second breakfast would be yogurt and cup of fruit. Protein in whey mix , fish, chicken, red meats, almonds . I still have not figured out exactly what happens. Sweets seem to help bring it on and to many carbs at one sitting and dumping happens .

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Hi, just re-read your post about anti-depressants. We have just come back from a lovely holiday, rested and I thought rejuvenated, but, my husband had tried an anti-depressant before the holiday but stopped as it made him feel sick. He was feeling a bit nervous about doing things, even things he’s done loads of time and Last week his GP put him on another - Sertraline 50mg per day. After 5days he feels very depressed, can’t motivate himself to do anything! Was that the type of pill you were on? It does say that symptoms can get worse initially, but he’s never been like this EVER! Any advice, as always will be gratefully received. Hope you are still progressing well. Regards

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I was just looking for that depression medicine I was on but can’t find it . That name does look familiar and she chose that because I have AFib and take meds that would not react with it . I am at 10 1/2 months now and still struggle with lack of energy. Last 2 months have been down hill and can’t seem to pull out of it. I go see my doctors in September maybe they will have answers. At 6 months I was feeling good and life was coming back, don’t know f over did it by last 2 months I seem to sleep and need more rest .

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Thanks for getting back to me, sorry you’re not feeling so good at the minute. It’s a roller-coaster of a journey, my husband’s brother is just over 1 yr post op and he seems to have reached a reasonable level, but still gets times when he is very tired etc. My husband will see his GP about the pills but the leaflet says that symptoms can get worse before they get better!! Keep positive and remember that you and my husband and all the others are the lucky ones!! We know of at least 3 people who could not have the surgery...... good luck and hang in there! X

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It sounds as if he is doing very well, it took me 2years to adapt to this new life style. Looking for light at the end of the tunnel is difficult to find when you start out. But I have had 25yrs since my surgery so all I can say is travel with hope. Best wishes sally

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3 months is early. I have to rest regu

Arly through the day and I am 21 months post op. Keep positive and, if you really cant, then get hep. Keep a diary to see progress. Learn to live with the new you

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It takes nine months at least to recover from the Ivor Lewis op, it took me about a year, if it will make him feel better I'm seven years post op and still working in the building industry and will be seventy one this year with no plans to retire

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Luvver

Thank you for your post and all the answers from other patients and carers.my husband had Ivor Lewis op 7th March and is experiencing everything your husband is. I take great comfort from this site.its my go to for all the things he is experiencing.hes still on the nightly feeding tube and is on first cycle of post op chemo.difficult days with fatigue and sickness.

Thank you everyone to know there is a positive future.

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I would say don't be worrying too much at this stage, I think this for some of us is quite a long term problem. I'm three years plus post operation and I still suffer from exactly the same problem. I was 32 waist day of operation, I dropped to 30 and got some new clothes and then I dropped to 28 and got more clothes now 28 waist is too big. I am a bit unwilling to dump all of my clothes because you never know I might put weight on one day.

So look on the bright side if you can, we are still here. I have the same resting after every effort as you and it is frustrating, but just stick with it. I have got into the routine of short work session sleep session food session and then when I finish dumping, start over again.

Good luck with it all

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Hello, I’m just reading your post and all the comments, sorry to be so late to the conversation. My husband is 15 months post IL and we just took our first mini vacation last week. He’s suffered the worst fatigue up until about one month ago. Taking long naps every day he’s home ...at least 2 hours. He’s working full time and when he’s done he has no energy for anything and in bed for the night by 8pm. Very discouraging! But he’s figuring out how to prevent the hypoglycemia spells recently: snacking every couple of hours with protein and that’s been a big improvement. If we go anywhere I pack a bag of protein bars, peanut butter, banana or cheese. And it’s kept the hypoglycemia away. It’s a very slow healing process....I find looking back at how he was a couple of month’s ago a good way to see progress . Keep the faith that it will get better in time. It’s a new way of life, takes some figuring out, but patience and determination will get you far.

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