I am London based and now 5 months post Ivor Lewis two part and according to the Professor very lucky as mine was caught early and I didn't have to have any chemo (Thank Goodness). I spent just over a week in ICU and down from 10 + have lost 3 stone and have had constant diarrhea since xmas. I am 69 and no quitter, but it really has got me down as I was doing so well apart from the usual post op things. Had the barium swallow repeatedly because it kept going straight into my lungs, and after I had the stretch without sedation which was truly awful I managed to develop a new sort of swallow and burp technique.
Have had dumping and nausea and palpitations whenever I eat and spend far too much time rushing to the lav. Unfortunately for now I can no longer look at myself in the mirror I look like a skeleton and it makes me feel down.
I came across the site and thought I must have a read and join up and I can honestly say it has made a BIG difference to my outlook reading about all of you. Shared experience and lots of solution suggestions
One point I would like to pass on to everyone is in relation to continued reflux. I first tried the wedge type pillows and found I was still choking in the night with food coming back up into my lungs which is the absolute worst thing of all. After surfing I came across a metal frame arrangement you can put under your pillows and I have had no problems with reflux since. The only problem now is because I am always sleeping on my back I really do get a sore bottom, well what's left of my bottom!
Reading about everyone else has really made me count my blessings and feel much more positive I do have a lot of problems with food but what I can gather most of us do, for me it's the determination to up my weight and energy levels. I have always enjoyed walking and have done a lot of the coastal paths around the country with my sons and was a pretty fit chap. Pre op on the professors advice I did a 3 mile walk every morning before breakfast and a 90 minute workout in the late afternoon and I put on a stone by scoffing everything in sight! Now I am lucky if I can walk a half a mile without stopping for a rest every so often.
I am a vegetarian and I am having difficulty in particular with anything that includes pastry especially sweet things, but after reading about the difficulties some of you are having mine seem to seem much less significant and I feel more positive for the future.
I have learned already that a good part of the recovery process is about frame of mind and determination and I would say to all who are having a hard time with this don't despair, share, there are other people out there who care and will try to help as much as possible. Good luck and improved health everyone.
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tallbear
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I am so thankful for the fantastic support everybody on this site offers , whatever the question, you will always get a helpful answer. Thinking of you, x
My husband had his 2nd chemo pre op last Monday and is currently having GSCF injections, due to low wbc. feeling positive thanks to "New friends " and their support on this site.
Firstly, congratulations on getting over the OP. I also had mine in St Thomas's in London 18 months ago.
Like you, I am a vegetarian.
I developed very bad diarrhea (extreme) a few months after my op. even water went straight through. This lasted for over a month and eventually I was told I would be hospitalised due to the extreme dehydration. My skin had orange peel all over and my weight had dropped to just over six stone. In desperation I forced myself to drink 6 litres of bottled still water a day. Along with the usual re-hydration powders. After two days the diarrhea stopped!! It was as if it had never been there. It just stopped dead. MY GP insisted that I keep drinking between 5 & 6 litres of water a day for a week. But it stopped and has never returned.
I did have "stool" tests done at the time when it was at it's worst. These were all negative as were my blood tests etc.
WARNING: The not nice bit. With me it was just pure liquid that was coming out. Usually dark green almost black in colour and foul smelling. I would urge you to try the water as dehydration is very serious for us so soon after surgery.
I wish you well. Please do keep us updated on your progress.
Oh. I should have said. I am now annoyingly healthy and outrageously good looking. I started off - pre-op at 14 stone and now healthy at 9 stone and like that weight.
Thank you for your very helpful comments, if it worked for you it has certainly got to be worth a shot. I see what you mean about outrageously good looking, I'm the same and congratulations on the weight it seems to me that you have had a bit of a positive there.
One of the things I forgot to mention as well was that the Doc put me on to Creon because I probably did have this problem with absorbing fat but being a veggie it disagreed with me and only made it worse so I stopped taking it.
I will try to keep you posted and thanks very much for your very helpful comments.
Like you I had op when 69, three years ago. It has taken a long time to get back to some sort of normality with reguar eating and bowel movement. Everyone on this group has had different experience as we all have different bodies which react in its own way to the surgury. I was back to walking 10 miles within a year od the op and completed the Border Abbey Way last year. But whilst I was out of action someone made all the hills steeper!!
Really really positive comment thank you so much for thinking of me, I can't wait to get back to moorland hikes and week ends away with the lads. We camp normally but the boys are saying we should B&B it because of my health issues. But I would rather wait a bit longer and sleep under the stars.
Have you done the South West coastal path by Durdle Door or the Robin Hoods bay path up North East near Whitby? They are both mighty steep and stepped to help climb them. Really pleased to hear you have recovered so well and good luck for your future walks.
After a few months, it is common to have a 'down' period before things start to get better. I don't think it helps that one looks so ill when you probably looked perfectly healthy when you were diagnosed, and this makes one tempted to wonder in the middle of the night whether the whole thing was worthwhile!
Peristent diarrhoea is not good for you, and you do need help to try and sort it out. A gastroenterologist like Jason Dunn at St Thomas or Jervoise Andreyev at Royal Marsden, perhaps. I think it might be connected to whether the reflux you have is acid or bile. It is worth trying to get a test for that. If it is bile, it would be a different medication, because PPIs like Omeprazole only switch off the stomach acid production; it also depends on how much of your stomach you have left because if you do not have a stomach, your aciod production will be virtually nil. This lack of stomach acid can have an effect on your bowels because some of the 'bad' bacteria will not have been controlled by that acid. Some people have been to a gastroenterologist and had a cycle of ciprofloxacin, doxycycline and erythromycin over three months - they are all antibiotics and this eventually clears things up for them, but you need to have a specialist consultation and tests first. Persuistent diarrohoea can be very debilitating and one should not ignore it. It is no wonder you feel underweight. I would contact the specialist and ask for the best gasroenterologist that they deal with. Meanhile consult your phatramcist about Imodium - some people say that you can exceed the dosage quite safely, but i would always take their advice.
If your stools are light brown, oily and float, you may have an issue with digesting fat (steattorhoea) and there would be medication to help with that.
There are probably several things going on at once. I would think about your insulin levels if you are suffering from palpitations. Stay away from sweetened food (a challenge in itself), lactose or anything with -ose on the end, and try and adjust your diet as if you were diabetic. Having an insulin level test / meter might be helpful to test things a little while after you have 'eaten'.
You might try a mattress topper (from a place like Dunelm). One's backside does diappear, but gradually comes back with gentle progressive exercise.
It is indeed an enormous challenge to one's morale and resilience. Continuing to make the effort day after day does take its toll, especially with the diarrhoea. But if you are a bit better this week than last week, and can walk a little bit further away from the loo, you are making progress, and there is no reason why this will not continue.
Thank you very much for your advice, I am about to undergo a series of tests with the Gastroenterologist within the next month, so I will keep you informed.
My problems started with Barretts esophagus and the cells became cancerous after a number of years.
As far as I am aware I still have most of my stomach, though I did have a hiatus hernia at the junction between the esophagus and the stomach. My stomach was turned into a tube to replace my esophagus and the reflux was always acid as opposed to bile reflux and I am taking Lanzoprazole for this.
Pre Op I was taking Omeprazole and it kept the reflux down very well.
I am also taking Loperamide (which is the same as Imodium) 4Mg every 4 hours which has made a great difference. It hasn't stopped the problem but it has made it more manageable and controllable.
I value your advice about the palpitations and the sweats etc that I was getting with sweet things and any hint of pastry, so I just avoid these things now. It is also odd that one day I can eat something with no adverse consequence and the next day the same thing will give me stomach cramps and the sweats etc. One quite positive thing is that I can eat chocolate providing I eat nuts at the same time, which is good for me and I do seem to be getting some of my appetite back.
Once again thank you for your very helpful comments I do appreciate the efforts of everyone in trying to help.
I should have said that by my results being negative. I meant that they found no issues.
The thinking with the water is that does two things.
1) Keeps you hydrated and re-hydrates you.
2) Flushes any lingering bad stuff through quickly.
I did visit Jason Dunn in London Bridge Hospital and he was (as Alan says) very helpful. He did suggest that I stop the pro-biotic daily drinks that I had been taking. Some find them really helpful, for me they had no noticeable difference.
I still firmly believe that we are all different and that there is no "one size fits all".
Trial and error works for me with few absolute disasters. Time is the best healer. One year post op was when I really started to look back and struggle to think how ill I had been. I still find new things to worry about. Aches & pains that come and go, some more quickly than others. Trying to have the confidence that every new ache is not "it" coming back is a pain in itself.
I liken it to my restoration project on beautiful old Mercedes car. Every time I fix one bit, another bit falls off. This leads to irrational demands on my wallet (so my wife says). But it is an old car and it is still going and hopefully will keep doing so for some time to come. As I type this I can feel more bits falling off.
Careful with that Mercedes Bruce, too good a car to abandon because a few minor bits drop off, this is par for the course with older cars.
I have a 1955 Austin A30 (4door) not as my regular usable car but as my project which is well underway and I will get back to it.
My stool results were the same and I did feel quite bewildered but going back a full year when I was fit and generally healthy I had an extreme bout of diarrhea which lasted a month or more, (stool results nothing) and after a lot of aggravation my doctor sent me for a gastoscropy.
This was when they discovered I had had Barrett's for a number of years, my previous gastoscropy being in 2001 showing a lot of inflammation of the esophagus. I didn't find this out at the time, only later. A blessing in disguise for me.
The other thing in relation to current problems was that my dietitian recommended I have ensure plus everyday, but my system can't cope with that either.
Good luck with the car and thanks very much for your very helpful comments.
Sadly for me chocolate is now off the menu. It gives me severe hypoglycemia. By severe I mean passing out and fracturing my spine in two places severe. This is an add on to my "late dumping" both of which are as a direct result of my surgery. Jason Dunn prescribed me Acarbose (sounds like a jazz singer) tablets for the Late Dumping and Hypo's. This slows down the sugar absorption. It will not stop the hypo's on it's own so I still need to avoid the obvious indulgence in chocolate and really sweet stuff. But it has been brilliant for me. I have not had a single collapse since I started it. I do monitor my my blood glucose levels with a meter. But to be honest..... I don't really need that now as I know that the triggers are sugary foods/drinks and I also recognise the onset symptoms so can take avoiding action (Dextros tablets).
All in all I cannot complain. My surgeon (my hero) the wonderful James Gossage, has continued to help me at every turn with genuine advice and encouragement. I am back playing golf and have returned to work. I have seen my second grand daughter born and watched my own two daughters blossom.
I also (and I am not making this up) got my first ever Hole In One at golf.
Isn't it wonderful when you get to see your children grow and blossom and then have grand children. It really makes everything worth fighting for, I suspect I am a bit older than yourself as my youngest grand daughter is now at University and still the apple of my eye!
Hearty congratulations on the hole in one an excellent achievement.
I meant to say I had my op at St Marys and my surgeon was Professor George Hanna who is also incredibly dedicated and the nicest chap you could ever wish to meet.
In a few days comments such as yours have given me a new and more positive outlook on my future.
I was 58yrs when I started this journey. It took at least two years for my body to adjust to my new anatomy. It was difficult at times to cope with the reflux, dumping, diarrhoea, etc. One foot in front of the other and keep going and now I've reached what I never thought was possible, the grand old age of 80.
Recently the diarrhoea became worse and I also went to see Jason Dunn, various tests later and I had a 5cm polyp removed from my bowel. It is amazing the amount of help and support there is out there for us. Research is constantly moving forward.
It is still early days for you yet, my best wishes on your journey and remember there is a lot of support out there for you and also the family who are also involved. Take care Sally
Massive congratulations on reaching 80 years that really is a heartwarming message to send and it brings a big smile to my face which is in need of smiles. I am lucky in that I have a really supportive family and my wife is the absolute best. (we have been together a long time).
That was quite a big polyp, I had a few removed but they were insignificant.
Here's wishing good health to you and a happy future.
With regard to bed arrangement - I had my op 8 months ago and just before my 70th birthday. I got the loan of an electric bed from a nursing home but didnt like it so after a few weeks I raised my own standard bed by 300mm . (This is very simple .Most bed bases have a timber inner frame . I fixed a strip of plywood to both sides at the head and midpoints - more details if required) I have been sleeping on my sides from from about week 4 . Sometimes my right side does not work so well but in the main my sleeping is very comfortable and no bed sores .
Dear Tallbear. I am only 2 1/2 weeks post op but my wonderful GP suggested taking UDO's oil probiotics and digestive enzymes (I add capsules to a shot glass of juice) and this has already halted the diarrhoea. I also take electrolyte drink after one bout to replace lost ones. I also use a spray multivitamin and vitamin d and a vitamin b patch (as the antacids reduce vitamin b absorption). All wheat and sugar causes a sugar spike as they are high glycemic so this may be your issues with it triggering the dumping. Personally, dairy guarantees severe dumping for me so I've already identified one trigger to avoid. It is probably because it is rich and hard for my system to cope with. As soon as I get the palpitations and sweats (about 15 minutes into eating) I go outside to cool down and go for a walk which I find is helping calm it down.
Please can you post the name of the metal frame as I agree the wedges are too low and I have 5 pillows on top of mine. I know all about a sore bottom, mine is so bony as I had chemo and chemoradiotherapy and despite my best attempts managed to gain not even a stone before surgery as Iam naturally slim - it is even painful to sit in the bath.
I currently have pneumonia now in my other lung , that awful tickle in my chest causing agonising spasms in my right ribs, , no voice and agonising pain in my right ribs front and back, a painful sore throat ( even swallowing water hurts) and neck (from my neck join as my surgeon found a nodule higher up way from the tumour and had to switch from a chest to a neck join) and worst of all I cannot speak or even whisper so I cannot even talk to anyone - not even my young son. I can barely sleep.
You say it is about determination and frame of mind and you are probably right although frankly right now, had I known what was actually involved I would never have gone ahead and just gone with the chemo and chemoradiotherapy and taken my chances. All the surgeons really emphasises is the small meals and sleeping up but no-one tells you about all the rest (I saw 2 surgeons including your prof) or they know you won't go ahead with it. I wish I hadn't. This is a living hell.
Blossomstix, I am so sad to read your post, I am now a year post op and I still can't put on any weight. The food side of things has improved because I have cut so many things out and I'm afraid my diet is pretty bland.
But back to you, not being able to speak must be absolute torture for you it is so important and such a stressful thing. I do feel sure that if you hang on in there things will improve but at the moment you are probably at one of the worst stages of the whole thing. It will improve, it's a dreadfully slow process, but talk to the docs about your voice you must get that back as the biggest priority. Mine came and went for a while but I found those yoghourt flavour ice lollies were great for easing the throat discomfort. And my body didn't reject them.
I still find myself in the doldrums and suffer from depression, but I have to snap myself back out of it because I made the decision to go ahead with the operation and I can't change anything now.
Trying to get some decent sleep is so important, I purchased my bed frame on e-bay for fifteen pounds from a company called Karemobility and I see they still have some in stock.
Just in case you are not an e-bayer here is the address and phone number and e-mail for the company. The item was called an adjustable backrest with pillow reference 865/0407.
Bradley Thompson
Plan Z, Unit 7
Rotton Park Street
Birmingham
West Midlands
B16 0AB
United Kingdom
Phone:0121|4544222
Email:planzd@aol.com
I also have a couple of things for the bath which
now make the bath more comfortable which I purchased on the net from completecareshop.co.uk
bath pillow (CCS1474) and a cushioned bathmat with integral pillow (CCS3605)
I also purchased for my bed arrangement a foam type doughnut ring, my one is about 450 round and 120 deep. If you do buy one check out the size first because if they are too small they will be uncomfortable. I position the ring directly under my backside and I sleep in an almost sitting up position, it's the only way I can stop the dreaded creep of the reflux up into my lungs.
I know from my own experience how easy it is to slip into depression and I fight to keep it at bay even still, but please do your best to keep your spirits up, it does help with the healing process and it is better for you in coping with what has happened to your body. I continue to get the chest and rib pain for which I am still taking Tramadol, it's the only one that works for me. The others do nothing.
It must be so difficult for you with your young son and it does make me feel sad, but keep your chin up it's not for ever and if you take care and look after yourself properly it will gradually get better.
It will be a different you to the you before the operation. Your life will be forever changed but look on the positive side the chances are good you will get a good quality of life in the future.
I sincerely wish you all the very best with everything, we had the best surgeons at good hospitals and hopefully we will both be 'cancer survivors'. Try to think of the things you can still do that you enjoy and concentrate on getting better. If I can be of any help or assistance or just someone to sound off to with similar experiences my e-mail is hogzilla9@yahoo.co.uk.
Best wishes and remember it's still early days I promise it will improve
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Can someone tell me what this taste is?
POST OP..... EATING PROBLEMS
Wedge pillow or adjustable bed?
Bile reflux after oesophagectomy in 2004
