Excessive tiredness: I am now 2 years... - Oesophageal Patie...

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Excessive tiredness

I am now 2 years passed my Ivor Lewis op.

I am continuing to improve (although slowly) and not without the risk of dumping if I dare to try to exceed my eating boundaries. Sometimes they still occur without any obvious cause. At present I am taking domperidone and Audmonal Forte thrice-daily before meals and they have definitely helped.

My question today is, have any of you out there found a cure for the excessive tiredness I feel. The obvious reason is with our new plumbing one cannot take in enough food to supply enough energy and my stomach just cannot tolerate any of the obvious supplements i.e. Complain &c. without experiencing vomiting.

I would really be grateful to receive your comments. Thank you.

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Hi Johrene,

Have you spoken to a dietitian at your hospital, they may be able to assist.

In terms of energy, how many calories do you think you are consuming? Are you eating low GI and low GL foods which minimise dumping? Eg. Protein, bananas, certain fruits? You could try eating a small piece of banana 15 mins after your meal to level out your sugar. I also liked worthers originals, or any boiled hard sweet. They have me energy, but I couldn’t get dumping from them as you could only suck on the sweets rather than eat them.

Are you eating anything which could irritate your digestive tract? For example, I used to drink a latte, every day, not knowing that for me, milk was an issue post op.

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Many thanks for taking the trouble to reply. I contacted the dietician at the hospital last month and she said she would get back to me in May - but I'm still waiting!!

I really feel that I and am sure many of us would have benefitted from getting a lot more information post-op. I feel that with me it's all been about trial and error - and the errors have never been very pleasant.

I didn't have a very good start either, I was discharged suffering from c-diff which was not diagnosed until I was re-admitted to a different hospital 6 days after being discharged. I'm sure this mucked-up my plumbing good and proper before I had a chance to start recovering.

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The symptoms you’re having a quite normal and it can take a few years before you learn what foods and quantities work best. I’m 12 years post op and it’s only been the last few years that things settled down.

Unfortunately, everyone is slightly different in what works for them, but if you stick to small meals/grazing and low GI, you’ll find your energy levels will improve. It’s the dumping that will be tiring.

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It may seem strange but I think exercising helps, walking regularly will help with digestion and give you more of an appetite. Try not to count calories, you only end up worrying more and this will also affect the digestive system, think of the connection between worrying and stomach ulcers. Go easy on yourself. My life consists of constant nibbling and the idea of eating large meals fills me with horror. I eat crispbread, cheese, eggs and drink fresh fruit juice. I love vegetables but have to remind myself to cook and eat them.

When you feel tired have a nap or sit down and put your feet up then when you feel better get up and go for a walk. I still get tired in the afternoons and it's nearly 18months after my Ivor Lewis.

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Thanks for taking the trouble to reply. I really value everyone's opinions. We have just bought a Border Collie pup so that is definitely making me take walks. After much nagging from my wife I have to agree now to listen to my body and, as you say, when I feel tired just take a rest. All I have to do now is conquer the feelings of guilt for doing so!!!

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One way to look at it is you need to look after yourself, so that you’re in a position to help others. That’s what I do when I decide not to go for a family dinner or a trip...

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I am so pleased to hear that you now have a dog. I am a labrador man and they have got me back to fitness. I gave up smoking before I knew that I had cancer and I can now walk up hill and down dale but I do get tired, so I have a rest before I go out again. I have never seen a dietitian but I can't complain because my operation was a complete success. I am a very lucky man.

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Vitamin and micro nutrient blood test important.i,m 7 years post-op .have been prescribed an iron supplement a few years ago now fatigue creeping back.latest blood test shows low vit. D

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These replies show how different we all are, I am 10 months post op, eat a small cooked breakfast each morning, sausage, bacon, egg, tomatoes and good old baked beans, often starting with 1/2 a pink grapefruit, this seems to set me up for the day, now the weather is fine I try to cycle 8 to 10 miles and this morning I was out metal detecting for 4 hours, good gentle exercise, nothing to eat till I returned home, chicken sandwich then a 1 hr sleep which I take most days.

I often doze off after supper but still seem to sleep well most nights am taking a Vit D tablet and A-Z multi vit.

I suppose that at 74, age is telling on my energy but we have to make the best of our 2nd chance at life.

Keep snoozing.

Jeff

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Hello Jeff,

Did you have the full Ivor Lewis procedure?

Martin

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Hi Martin

Sorry for delay been away, yes full I.L. 9hr op tumor and most esophagus removed, unbelievably by key hole surgery, just woken up after my lunch time 1hr or so nap.

Had the op at Queen Alexandra hospital Portsmouth, fantastic 'Upper G I' team there, the surgeon even phoned me 2 days before I was due in for it, 12 days in hospital bloody feeding tube was the worst pain I had and taking it out was an experience !

regards

Jeff

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Wow, that sounds amazing, keep it up!

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Thanks I will hope to ;- )

Jeff

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Hi

I'm 3 years post Ivor Lewis and like you have tiredness mostly persistent and I never knew their was so many different feelings of tiredness. Like you dumping and diet are a issue. I have always mentioned this to my GP and Consultant with no action taken beside commiserations, routine bloods, HB levels etc.

I split my day into 3 sessions, morning, afternoon and evening I must rest for1 of these times, By rest thats laying down and sleeping,

After 2 recent routine operations for Breast Cancer where my Blood Pressure was very low I was recommended to see my GP. I saw a 'student' GP told who requested so many different blood tests in 6 different bottles, more than previously taken. The Nurse even wanted me to lay down when she took them. 3 days later I had a phone call from my GP,I was severely Vitamin D deficient and needed to start treatment ( Vit D Capsules) and referred to an endocrinologist as Cortico? steroids are low.

I do wonder if I hadn't seen a student would I have had so many blood tests

I do miss the volunteers on this site who often were a font of Knowledge about these things especially Gutless wonder, often citing research or where to go for advice.

I'm sorry cannot say how your tiredness can be treated only offer my experiences.

Best wishes for a solution to be found, there will be one somewhere

Cath

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Hi Johrene

Don't normally come on here anymore but hope I can help

Tiredness and fatigue is a typical symptom post-op and can last for years. Following a stomach pull up/through, food is not processed as it was and the body often suffers a low iron take up/anaemia (also B12 deficit). Visit your GP and get them to take a blood test - HB and Ferritin - to measure your iron levels and back up stores. These often show as low in patients. You might be prescribed iron supplements such as ferrous sulphate either in pill fom or if they cannot digest them there are some decent liquids about such as Sytron which is easier on the stomach and is used by children.

Increase your iron intake by eating the right foods. Suggestions I've been given are liver, red meat, green veg, pulses and my fav Guinness.

There are also some other threads on tiredness on here which might help

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Many thanks for your informative reply. I have been getting B12 injections every 8 weeks, but just realised that I have not had any blood tests since my op. I have an appointment with my GP tomorrow and will request blood tests to be done. She has been with me since the diagnosis so is familiar with my situation, but what I have found is that unfortunately very few GP's have much detailed knowledge of the Ivor Lewis procedure. I was very lucky that in my case the GIST was benign but sometimes that makes me wonder if I should have gone ahead with the op in the first place - but that's just how I feel on a bad day!!

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My husband is almost 5 months post op and all I can say is that is so very difficult, there are so many things happening in his body, things change almost on a daily basis! All I can say is (as I am sure you know and have heard so many times) be strong, deal with each day as it comes, listen to your body - tiredness is not a sign of weakness, rest for a while then get up and start again! This is all very easy to say, but so very difficult to put into practice. It is a comfort to read all these posts, life is tough but you are all still here!! We must celebrate that fact at least. Good wishes for the future.

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I have found that 4 x smaller meals per day helps and I try to eat as nutritiously as possible. ie I find eggs are easily digested and home made chicken & vegetable soup. I avoid anything acidic, so cheese, tomatoes, spicy foods are avoided.

Also, walking steadily in the fresh air with my dog seems to energise me too.

Hope this helps.

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