I wrote an earlier post today about ongoing pain years after an Ivor Lewis procedure. Since then, I have read through hundreds of posts and have three questions for the community based on common patterns I'm noticing.
1. How big are the meals you eat? Can you give me examples? It seems overwhelmingly pain is related to eating. I'd also be curious to hear about everyone's pre-sleep rituals.
2. Can you describe the pain you experience? It seems most members report sharp pains and something they can cope with at home with opiates or with mental control. I also see a lot of coughing and burning sensations. The descriptions, locations and feelings seem so different from what we go through.
3. Does anyone have experience using marijuana? CBD didn't do anything. THC seemed to help but had negative consequences. Looking into THC-A now which doesn't get you high. For the record, I don't smoke and I'm not advocating for it. I'm just curious because it's seemed to have a large impact on symptoms.
Thanks for the years of posts I sifted through and everyone who battled this before we did.
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jessefrye
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I am fortunate in that i eat normally, that is a large adult meal, ( 2 /3 courses) anything goes, however I do need to sit down afterwards.
Normal pattern is small breakfast (crusts off sandwich) or couple of rashers of bacon one egg and small fried bread and beans, however bread does it for me.
Lunch very very small if any
Evening meal as above
Pain levels are more an inconvenience in that i often feel as if a tight band is across my chest, but it is manageable without drugs and is only occasional, probably when i have had too much to eat and drink as I still manage 4/5 pints a day
Bed time like most on three pillows and must sleep on RHS or else.
I was 60 when i had my IL op and know I am one of the lucky ones 5 years post op and still very active including runner half marathons. Every day i thank the Newcastle RVI and their professional team.
I'm finding it difficult to describe how much I eat. Even a slice of toast varies in size. Perhaps the best way is to say I occasionally have Wiltshire Farm Foods frozen ready meals. I can eat half of one, with the other half about 3 hours later. If I eat more than half at once I get a nasty deep pain, and have to lie down. I don't take painkillers, but I use relaxation methods remembered from giving birth!
Why? We all have different sizes of stomach, both before and after the operation. Two oatcakes and I am full up. Anymore and I am in discomfort or pain or having to make myself sick. Others (as you see here) can eat a fairly "normal" meal. What I found hard to accept is that the stomach (as it is now) is just a sleeve. Once it is full of anything (drink or food) it is full and has to wait until it is empty again. Sounds simple? No it isn't. You get thirsty, you have a drink, you then can't eat. For me I have to be careful that I do not eat to the point that I cannot have a drink. That is just not fun when I get thirsty.
I still think that you may have to separate eating/fullness pain from dumping pain.
Dumping pain, can be off the scale. I have been wet with seat and doubled over with that pain.
Then you have to separate "early dumping" from "late dumping".
Early, will normally occur as you eat or very shortly after eating.
Late, is normally about 1.5 hours after eating.
I suffered from late dumping for around a year after surgery and occasionally still do. Sugar is the trigger for me and I now also suffer from "Severe Hypoglycemia" This is very common in people who have stomach/upper GI surgery.
Eating out can be a lottery unless I am very sure about the food ingredients. Many a family outing (in the early days) has been trashed when I have ended up being ill 1.5 hours after a simple Cafe type nibble and coffee.
Hiya Jesse, I do sometimes suffer with late dumping , which is usually my own fault for overeating , my surgeon once told me that the hardest thing about recovering is having to learn to eat again ,, he sure was right in my case , I am now 4.5 yrs on from ivor lewis and chemo and I must say I am learning . my daily diet usually consists of , breakfast , one fried egg on toast, , I don't eat a fixed lunch during the day but I do graze on sandwiches or anything in my grub box , I find if I stop to eat I am in trouble , evening meal is the best one of the day , I find I can eat pretty much as I want to ,,, roasts, fish and chips , stew, even currys and a good plateful , I then sit down for a couple hours to digest it , about 8 n the evening I always have a couple pieces of buttered toast and then before bed I have a teaspoon of gaviscon advance , sleep on 3 pillows and all is well, I had 2 thirds of stomach removed, also I can do 3 pints of beer , cider if I go out without any probs , I guess I must be one of the lucky ones
There is a video about eating from the Royal Marsden in an earlier post:
The quantities that people can cope with do vary a great deal. But eating very small quantities at frequent intervals with food on hand does solve the issue for a good number of people. Eating more than the system can cope with does cause painful consequences.
Pain linked to eating can quite often be colic, or dumping syndrome pain. The spams felt by achalasia sufferers seems to be very different again.
Burning sensations are sometimes linked to acid or bile reflux. Persistent coughing is indeed a problem, especially when the lungs have been affected during the surgery or by infections eg from leaks.
Sleeping routines can be tricky. Not eating for a few hours beforehand is often helpful. Position can be very important, but the pain side of this does tend to improve the longer after surgery it is.
You are right in that there are a whole set of complex situations that people experience.
I think you refer to CBD and PHC as cannabis derivatives. The few people I know who have used cannabis-related substances in medical situations have described trouble with dosage and consistency, and a wide variation of different options that are available, say, in some US state jurisdictions. Most often, relative success seems to be related to muscle relaxant type situations, as in achalasia spasms, or multiple sclerosis, rather than after-effects from an oesophagectomy, although I have known one case where it had a beneficial effect on the side effects of quite high doses of palliative chemotherapy. You have to be careful about the after-effects of this substance even if you live in a jurisdiction where personal consumption is legal, and the case of it is distinctly controversial. There is some anecdotal evidence of medical benefits in some situations, but it is not surprising that cannabis is not recommended when there are such variations, unpredictability and uncertainty over its effects, and it can be the case that the doctors can find a legal alternative that helps.
Definitely, plus from what I've read cannabis leads to higher anxiety, depression, and anger in people who suffer from PTSD and I'm guessing most of us here can fall into that category.
My wife was telling me the over eating pain and the "other" pain that is excruciating are two different things. I think it is some type of nerve damage that happened during the surgery. The only consistent pattern over the past 6 years is when the RFA's were effective. Outside of that it's so hit or miss. Sometimes weeks go by being fine and sometimes every day equals ER visits. I'm going to look into some other type of nerve blocks I read about on the site to see if we've tried those. Thanks again for such a detailed response.
15 months past Ivor Lewis I eat comfortably 3 times a day and each meal about 3/4 of what I used to eat. I found overeating painful in the month postop in the sense that I often felt too
full and if I coughed I would keep it up until i vomited. I was of course experimenting at that time as to amount and content. It still happens rarely that I overeat but Tussionex stops the coughing reliably. Gaviscon and chewing gum work well for reflux.
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Reactive hypoglycemia
Bad dumping incident?
advice please for Creon 
From a Carer’s Perspective 
Post op sleeping position 
