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Oesophageal Patients Association
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12 years plus

It is 12 years since I had my oesophogectomy and I feel as if it was only yesterday. I still feel very tired all the time especially after eating. Anyone got any suggestions as to a good tonic which will give me more energy. The medical profession don't seen to be of any help so don't suggest I see my GP. I think I could sleep all day if I didn't push myself to be active.

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Ugh, so sorry to hear you have suffered this way for so long. My husband is 1 year post Ivor Lewis surgery and feels fatigued all the time and gets horrible nausea several times a week after eating. He is discouraged and we were hoping his energy levels would be better in more time. You have probably been tested for anemia... Doctors don't seem to offer any remedy except give it time... but you have given time!

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Hi Tinypuss

Snap! I to am 12 yrs post op and suffer the same as you, however I have a good support team including my specialist nurse who have carried out test and although they have put me on Forceval multivitimans I still struggle and have to push myself. Here's hoping someone will come up with the "miracle" suggestion. The only good thing is we are still here which I think outweighs the negative sides. Cheer up and keep breathing.

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Thanks for your comments it's good to know I'm not on my own. I am still breathing and have welcomed four grandchildren into the world since my op and have had lots of fun with them. Guess I'm just feeling a bit down at the moment!!

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Yes I know that feeling very very frustrating at times. I also have 4 grandchildren who help to keep me going as well as a fantastic wife without whom I probably so be writing this. I do find that with summer on it way it's helpful.Best wishes.

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Get a dog, preferably a Labrador and go for good walks. My op was 16 months ago and I know that my recovery was speeded up by my Yellow Lab Hamish, he's always so pleased to see me in the mornings, he lives in a heated kennel (ex gun dog) and although now a senior citizen he always cheers me up. I enjoy a couple of small bottles of beer at lunchtimes although that may not suit everybody. Also my grandchildren give me the will to live to watch them grow up. All in all a lucky man.

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I am only 4 months post op and like you I am extremely fatigued. I do take comfort in you being 12 years post op and still able to enjoy life. I find it a day to day struggle but very happy to still be here.

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I’m 13 years post op and knackered too. This winter has been particularly hard for everyone as it’s been quite gloomy weather wise.

I’ve found ‘Better You’ multivitamin spray quite good.

I know what will improve my energy levels, lower carb meals and going to the gym. I just can’t find the motivation at the moment to do either.

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I use that spray too

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Hi Tinypuss I am 10 years post op and l also feel tired after eating. I am also anaemic so take a liquid iron supplement. Have you had your iron levels checked? What I have found helped making me get out and about was doing voluntary work (which unexpectantly turned into a part time job) - meeting people and doing something I enjoyed definitely helped my energy levels. I am also a member of Rock Choir - singing is a great mood lifter and anyone can join Rock Choir - no auditions.

Hope some of people's suggestions on here help.

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Hi. Have you tried vitamin B patches from Amazon. After the op we have trouble absorbing vit b through the stomach. Also you can have a vitamin and mineral blood screen to see if you are lacking other things. Vitamin D deficiency is also common and here too, best to have an oral spray or sublingual drops.

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Hello

I assume you are on PPI’s, they stop you absorbing magnesium in the gut efficiently. An efficient way of absorbing magnesium is through the skin, try magnesium spray (about £8 from Amazon) , 10 sprays on each thigh each evening, should last about 6 weeks. Magnesium is ESSENTIAL for the energy cycle.

My wife is 5 years post op and has reasonably good energy levels. Give it a try. In the USA if you are on PPI’s they monitor your magnesium levels.

Refer to my other posts where I provide more info.

Best wishes

Steve

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3 years and I feel tired in fact worse energy than 6 months post opp. after 2 recent opps for Breast Cancer hospital doctors said may be Low Blood pressure, Low Blood sugar, possible side effect of meds and recommended I see GP. Appointment with GP tomorrow though when I have been before I dont manage to get them to accept it is a problem. I was told low BP is better than high, even when BP readings are low. If I can get a referral for some form of fitness exercise that will be a bonus.

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Hello there,

Some good comments on here. I am 7 years post op and am now 67 years old. It would be interesting to know the ages of the others who have commented on here.

I find that if I have a busy day I then need to have a very restful day to recover otherwise I get overtired and depressed. I have always previously liked to be ‘on the go’ so it has taken me some time to get used to the idea that I need to slow down much more than before. This is not too difficult in the summer as relaxing in the garden with a good book and a glass of wine is one of my simple pleasures. However winters can be depressing and I am always looking for inexpensive ways to extend my time in warmer climes abroad in the early spring and late autumn.

I work in the Oxfam Bookshop one morning a week and still work professionally three half days a week. If I hadn’t injured my leg I would be playing golf once a week. I’m trying to give my life some variety. I accept that I am weaker than I would have been if I hadn’t had the cancer but on the other hand I am very fortunate to be here at all, a thought that I always bring to mind if I start feeling sorry for myself 😊.

I would get a dog if I didn’t wish to travel so much. God willing, my first grandchild is due this month which I am looking forward to immensely.

I suppose my ‘answer’ to your query is to do little bits of what you enjoy and try and get some variety into one’s life.

Sometimes this is easier said than done but best of luck!!

Martin

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Just a possible thought, if you have had part of your stomach removed. Vitamin B12 needs the intrinsic factor produced by the stomach to be absorbed. Lack of B12 can make people very tired and needs to be given by injection not supplements. May be worth asking if you can have a blood test to see if you are short of vitamin B12 following your operation. Hope this helps Sally

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Sorry to hear you are still fatigued. I do take forceval vitamins, but I have also cut down drastically on bread and cake which makes me so tired. Every now and again I have forgotten and then remember to eat more protein (meat fish and eggs) in Small quantities of course which always gives me a lift. If I have over done tasks or exercise in the morning I do take a nap in the afternoon to power up again. Go with the flow that suits you - always.

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Hi,

Have you had your vitiman B12 level tested?

I am nearly 8 years post op and have a B12

injection every 10 weeks which does boost

my energy level somewhat.

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I am almost 75 years of age and 8 years post-op and like others, feel tired some of the time. I do, however, have a Labrador (3.5 years old) and walk him twice a day on the hills. In addition, I visit the gym three times per week to work on my strength, otherwise, it's so easy just to let yourself go, but it does take effort. I am, however, interested in what respondents have had to say about vitamin B12 and I shall certainly investigate that.

Best wishes to all,

Speakman.

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Hi everyone, 8 1/2 months after l/L and feeling good. I have had my rough times and usually refer here or some other site for insight into my problems. I for one keep a journal daily of the food I eat which gets divided into categories , protein, carbs and fat. I have managed to control nausea by knowing when to stop. I was told my stomach was 1/2 a cup and was given a half a cup to use and when not using have visualized in my head the portion I need. If I eat to much I will either get sick or be very uncomfortable in lungs and heart and it takes along time to go away. Things don’t fit the way they use to .

Stay ahead on the b/ms and use enough laxative but not to much, it’s assistance when needed . I always loved milk and ice cream now I find myself thinking it is causing me problems and have backed off on that to see if it helps, so constant changes. Hypoglycemia has been a problem from about 4 or 5 months out till last one 2 weeks ago. I find starting with protein in the morning gives me a good start , eggs and bacon topped of with yogurt and fruit. Try to keep protein up over 100 grams a day, it will help rebuild all that was torn apart during surgery and chemo and radiation and anything else that they hit you with. We are different now and need to understand and adapt. I turn 69 this month so I am retired and not in a rush anymore and look forward to feeling better and so glad I made it and so glad you all did. I enjoy riding my bike and track that, lol, and love to work in my yard and to be busy. Depression did hit me and I went to the doctor for help. I also have AFib so she had to sort through which meds would play nice with my other meds and picked one . On the seventh day I stopped, I was worse and lost all energy, she suggested I try another and I said no , just stopping them after days I felt better and start doing much better. Also if your state allows, I say all natural weed can help boost spirits and appetite. I feel great, the hardest part is the constant eating and sleeping at 30 degree angle. We are the Champions here to live on for the ones who are not as fortunate, appreciate your day and do your best to live.

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I am 63 years young and I've just entered my 12th year of having a Total Gastrectomy..i don't really bother with GPs tht much as they haven't got the knowledge and expertise of your consultant surgeons..get intouch with your specialist nurse and she will advise you better, tiredness and fatigue is normally associated with iron..they can send over a prescription for your GP to issue to you and to get your bloods checked..i find like many others i eat little but often and need to rest after as i get very tired..but i was told this would happen, stay possitive and try to keep your mind active..I'm also on multi vitimins including Vit D which was prescribed by the hospital (InvitaD3) oral ampoule) 1x every 2 wks ..stay intouch with your specialist nurse/team they will help you with any problems you have..best wishes ..

Suzy

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