Fatigue

[Tighan]

Hi everyone just wanted to get an idea of other people’s level of fatigue post Ivor Lewis?

My husband is 14 months post op and doing really well. He’s had a recent scan, bloods, vitamin levels etc and everything was fine which is so reassuring and we’re really grateful he’s recovering. He’s 65 and pretty fit and doing stuff like mowing the lawn, a bit of cycling, gardening but is still needing a sleep for 1-1.5 hours on most days and is tired in the evening by 9ish.

We’d been told to expect fatigue to be significant for the first year but weren’t sure if how he is now is the new normal? If it is then that’s fine, he just wondered what other people’s experience were of tiredness levels the first few years post op?

[Ilfc2022]

Hi Tiguan

I’m 23months post op, male, 77 next month. Fatigue is my main issue. I can do stuff for about an hour, then I have to sit down, pretty exhausted. Also sleepy for half an hour after most meals. Up days and down days of course but generally this seems to be my new norm. I’m just so grateful to the surgeons when I think what could have been that if fatigue is all I have to deal with, I’m happy. No pain, a bit of discomfort, just tired. I can live with that!

[PDM2021]

I’m 3 years post Ivor Lewis. Tiredness is the main difference I’ve felt. After a meal I can often feel wiped out and a little nauseous (minor dumping?), but a sleep of around an hour and I’m fine again. Some evenings I feel exhausted by 8pm. If I go to bed early then I’m awake from 5am but I’ve learned to enjoy those first few hours when the world is quiet!

I’m quite active, I play 18 holes of golf twice a week (which is a good 10 miles of walking). I feel physically quite tired afterwards but not in the same wiped-out way that follows after eating.

Reducing portion size and eating every couple of hours definitely helps reduce the occurrence of the wipe-out for me, when I remember to do it!

[PopandMo]

hi Tighan, I’m 2 1/2 years post op and still get tired quite easily. Saying that, like your husband I’m pretty active, so I guess I tend to overdo things at times! In my case I’m very light and seem to be stuck at a low weight so I guess that affects energy levels. It’s still pretty early days relatively speaking for your husband so he could well regain energy levels, but I do think fatigue can go with the territory so to speak. Good luck on his journey!

[champagnelover]

I'm 15 years post op and for most of the time feel fine. But like others often feel tired after eating and do sometimes have an afternoon nap. I'm 71 and still working part time (through choice) so eat even smaller amounts and no sugary things on those days. I am enjoying every day I can and so grateful to the medical staff and NHS for still being here!

[fortunatus]

Dear TihanI am 83 and 12 years post Ivor Lewis. I can confirm that fatigue is a continuing issue as is dumping. The problem seems to be that the more one tries to resume the old patterns of a normal, uninhibited life the more vulnerable one is to these unwelcome intrusions. The reality is that for most of us there is a price to pay for the extremes we went through. But life is still good. Keep on keeping on.

[walking-in-wales]

Hi, I'm 5-years on from end of my treatment & was 65 at the time my diagnosis. Fatigue has been an issue ever since, but was much worse in the few months after the post-op chemo. Bouts are worse after episodes of hypoglycaemia associated with "dumping". Winter bugs also seem to be more severe than they were & I do sometimes need an afternoon nap, more so if I suffer a cold etc.

Things have improved to the extent that I have recently been able to take up some running again. Never going to be the same as I was but age as well as the after effects of treatment take their toll. So I think not to despair, accept that a degree of fatigue seems to be the norm but can be managed & try to keep active e (& positive) even if it means more rest in-between. Good luck.

[Cavalier3]

Hi Tighan, I’m 54 and just over 3 years post IL surgery and treatment finishing. The consultant told me I would have a 95% recovery and that fatigue would always be a problem. As has been said if I push myself too much, forget to eat frequently then I suffer with fatigue. I’m often in bed by 8pm but then up early but I don’t mind that. I’m active I have dogs and I walk a lot. Your husband sounds like he’s doing really well. Sue

[liz_crisp]

hi I was 48 when diagnosed and 14 years on wipe out after eating is an problem ad if I do too much I know I need to take it easy the next day. You learn to manag es your energy and accept the wipeout abe some early bedtimes. Love being awake early it's a nice time of day.

[Tighan]

thanks so much everyone, very reassuring and good to understand it’s an ongoing common experience x

[whasler]

Some great comments on here. I'm virtually 61 and was previously a runner so fatigue was a real issue for me post op (Aug 21). It usually depends on how much sleep I get or whether I have a cold/Covid etc but I now swim (dull but effective) and walk the dog at a reasonable pace. Going uphill really varies but on the flat is less of an issue. And I'm a lot better than I was a year ago so like your stomach where eating larger meals will stretch it but it's uncomfortable, pushing yourself isn't necessarily a bad thing although be prepared to rest when you get tired. Listen to your body!

[grandylynda]

Hi, I am nearly 7yrs post op and as others say fatigue and dumping are still things I have to live with. On the fatigue issue though, have your ferritin levels been checked? I have done a lot better since it was recognised that I need iron tablets all the time to keep mine up. I don't quite understand the whole issue but my gp would say I was not anaemic so didn't need a supplement. The hospital team were saying I did because ferritin level was ,low. Apparently that is your iron store. Worth asking the dietitian or upper gi nurses if this hasn't been looked at. Just keep positive and you just gradually get used to the new you.

[purplekey]

3 years on still fatigued on and off but much improved in the last year. I love gardening so will do too much one day as I’m having fun and suffer for it after. But no one dies of fatigue so I accept I have to have an ‘in’ day(s). I too take Forceval multivitamin and iron from dietitian. Good luck. X