food: Hi Im 3 years post " Ivor Lewis... - Oesophageal & Gas...

Oesophageal & Gastric Cancer

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rasor profile image
16 Replies

Hi

Im 3 years post " Ivor Lewis " im very grateful to the doctors , but im still struggling sleeping , I have slept all this time in a chair ,dont really get a good nights sleep ,any advice welcomed , also struggling to keep my weight up ,any ideas guys ,

Can you all have a great xmas if you can , stay safe

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rasor profile image
rasor
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16 Replies
RoadRunner44 profile image
RoadRunner44

So sorry you have trouble sleeping, what does your doctor say? My cough keeps me awake. So irritating.

petercaron profile image
petercaron

Resor, What is affecting your sleep at night? Is it Reflux of bile

I am just over 3 years post Esophagectomy. i live in Georgia and I sleep in a sleep number adjustable bed. Sleeping inclined, I limit the nights I suffer from bile reflux. I end up a couple of nights a month slipping down in the bed and bringing up bile. When I do, I often aspirate the bile that as most of us know is a terrible situation. I have experienced aspirational pneumonia a couple of times a year.

To take the edge off sleeping, I take 1/2 a Trazadone each night (25 mg).

A couple of times a month I experience nausea and lack of appetite. My oncologist has provided me with a appetite stimulant that I take for a few days when I get this nausea/lack of appetite. The prescription is a liquid and is called Megestrol Acetate.

rasor profile image
rasor in reply to petercaron

hi Peter Thanks for info , stat safe

Molly14 profile image
Molly14

Hi rasor - I sleep on the sofa bolt upright - never had a decent nights sleep in 5yrs - tried everything and I also struggle with my weight, I’m only 7 stone but have stopped worrying about it as I’m a very busy active person and look well - eating for me is all about management and rather regimental as I’ve been left with zero appetite and nausea so I eat by the clock and never skip anything - have a nice Christmas

rasor profile image
rasor in reply to Molly14

Thanks Molly

All the best stay safe

Bunny69 profile image
Bunny69

Hi Rasor,I was struggling to sleep with a power bed . In my case I found it easier to sleep on left side so I use a y pillow or a full body length pillow to prop me in a position where I am comfortable. It has certainly improved my sleeping and can now get about 8 hours where before I was lucky to get 2 or 3 hours. Best of luck and best wishes for Xmas and new year.

Bunny

rasor profile image
rasor in reply to Bunny69

thanks Bunny have a good xmas stat safe

Quicksilver_1 profile image
Quicksilver_1

Hi Radnor. I’m about 5 years post op now. Have you tried one of the wedges available from the OPA? If you can afford it, an adjustable bed is the most comfortable. Although both options work, I find that lodging a pillow (firm memory foam one is best) just under your buttocks helps stop you sliding down. As far as I know, you don’t have to be bolt upright, but finding a ‘sweet spot’ between enough angle to stop reflux and not too high that you are forever sliding down the bed helps me. Try not to sleep in the daytime and get plenty of fresh air and light. Sometimes it’s about habit and if you find yourself waking at the same time every night, then a sleeping tablet might break the cycle. I have some Zoplicone for that. Ask your GP or a member of your team. It’s tough enough but when you’re affected by lack of sleep you feel doubly awful too. You’ve done amazingly well. Hope you have a good Christmas and best wishes.

rasor profile image
rasor in reply to Quicksilver_1

hi

thanks for your ideas ,stay safe and have agood xmas

Quicksilver_1 profile image
Quicksilver_1

Sorry Rasor (autocorrect!). Weight is difficult and a bit of a battle. Don’t expect to get back you where you were before. It’s a bit like cycling uphill, as soon as you stop peddling, you start going backwards. So you do have to keep to plenty of snacks and small meals. Again, get in touch with your nursing team to get you back on the Dieticians radar.

walking-in-wales profile image
walking-in-wales

I may be lucky, but 2 years post oesopho-gastrectomy (laparoscopic - which was great as far as these things go) sleep is generally good apart from occasional little bit of reflux making me cough at night. For me it's a combination of using a wedge matress, a bit of regular exercise & being careful with evening meals. Regarding weight, I try to keep on a high calorie diet - eat a lot of nuts & more butter & cheese than I used to. Managed to keep around the same weight though this is 3-4 kg less than I used to be. However, everyone is different & a lot of trial & error to get me where I am today. Good luck!

FKM100 profile image
FKM100

Hi. I must confess I have resorted to sleeping pills to ensure a good night's rest. I wouldn't sleep otherwise. To avoid acid reflux, apart from sleeping sitting up (I use a wedge pillow), I do not eat anything at all after about 3.30 to 4pm. I have my main meal around noon and make sure to avoid anything acidic or acid-producing. If in any doubt I will have a Rennies and a dose Gaviscon before going to bed. So far, this has worked well for me.

Mentalmicky6 profile image
Mentalmicky6

I'm 8 years post IL and my weight has been back to normal for most of that time, I never thought I would eat solid food again when I was ill but since about 5 months post op I'v had my appetite back but I'v had my fair share of bile reflux caused by eating late in the day , I m very lucky that I sleep like a baby but i do forget myself sometimes eating too late , as a general rule to be safe my last food needs to be no later than four hours before lying down

Janashlin profile image
Janashlin

Hi Rasor,

I am almost two years post op and I sleep very well.

I have an electric bed and sleep in zero gravity. Which is basically head up some and the bed raised your knees but not your feet. This stops you from slipping down.

For nausea and eating I take CBD oil with THC. I was in terrible shape with nausea until I started taking the CBD. It has been my life saver.

I graze a lot but still suffer with dumping syndrome at least once a day.

All the best, stay safe

jay2908 profile image
jay2908

Try amytriptylime 25mg an hour before bed. You’ll have the best nights sleep ever and you’ll wake up ready eat.

jay2908 profile image
jay2908

I should add the Amytriptyline also calms your gut down, so a lot less reflux at night. I also drink a little water before bed to wash down any food.

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