Oesophageal Patients Association
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Esopghagectomy 3 months ago, 29 year old patient, what should my expectations be?

Hello everyone.

I'm a recent patient of an Esophagectomy and have a few concerns, I hope I could get some insight on. I'm not exactly sure the type I had so I'll describe the circumstances.

I'm 29 years old, and they discovered a mass/tumor at my esophagus-stomach junction. It was pushing the opening closed and wasn't allowing food through. It was a benign mass although the size concerned the doctors. I was referred to 2 different hospitals before a surgeon would see my case.

I had surgery August 25th 2017, it's been about 3 months and a few days. They took most of my stomach and the bottom part of my esophagus, I was in the hospital for 3 weeks because I did end up getting a chest infection that put pressure on my right lung. I have a 4-5inch incision below my right arm and various smaller ones across my chest. They called them camera ports. Then of course the drain tube scars.

They had to spread my ribs to remove the tumor because of how big it was, they removed 2 of my drain tubes and let me home with 1 which stayed for another 3 weeks. I lost roughly 30 lbs during the process, going from 160 down to 130 (I stand 6ft1inches). I manged to get back to 145 before they removed my feeding tube, and now I am down to 135 again.

My ribs still hurt, not as much as they did with the drain tubes but they are definitely tender (always) and a spot behind my right shoulder is sore and swells sometimes. Will this ever go away?

I have no food restrictions but it's terrible to eat, I understand the smaller portions/more frequently and don't mind that but sometimes even a sip of water causes pain in my throat until I belch. The belching is embarrassingly frequent as well, happens a lot when I first wake up. I also seem to have a considerable amount of saliva always, especially in the morning. I do sleep with a 12 inch wedge, 30 degrees.

Does the acid reflux settle down over time? Will I be able to eat more eventually? Should I be able to have a full drink of water instead of just tiny sips? Will I ever gain good weight back? I focus on chewing lots and making sure to eat small portions but even then I seem to still get pain in my throat. It feels tender always. It seems like it takes an hour to eat something simple. My diet consist of 2 scrambled eggs in the morning, pasta in the afternoon, and a sandwich at night. In between those I eat 1 yogurt, 1 pudding, a cookie, a few fruit snacks and a few small half glasses of milk.

I am on no medications at all, I've been eating lots of Tums and using over the counter omeprazole but it doesn't seem to help at all.

I see a lot of people say they adjust to a "new normal", is the new normal just dealing with the pain/belching/food intake sizes?

I was staying at my families house during the heavier part of the recovery, but now I'm back on my own (single), as I had to move back to get back to work (very nerve wracking).

It really seems like there is little or no improvement, in fact it seems I am even less comfortable than I was before the surgery. It's depressing.

-Kaj

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My heart goes out to you, what a horrible experience! My only knowledge of omeprazole came about because of the pain killers i'd been prescribed, and the omeprazole was supposed to help decrease the damage they would cause to my stomach lining.

I haven't taken NSAIDs since I discovered a CBD users group on Facebook which has been reallu useful. Although I still take cocodamol (for ankle and other painful problems) I no longer need omeprazole, so my knowledge of it can't go anywhere near solving your ailments. Have you explained all this to your Dr, he/she ought to be able to help you as it looks as though you are a long way from well. You are very young to be suffering like this and its unacceptable.

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Cos, I'm experiencing everything that you are. I've had my surgery 4 years ago and nothing has changed. I still have the belching still eating small meals still losing weight stop the ppis because I have no stomach at all. I sleep on a wedge I sleep sitting up, it is depressing. Everything Burns when it goes down;

Water and food. I drink just about everything through a straw. Sometimes I lose my breath and I have to stop for a few moments. All I can say is we have to keep searching for answers and we have to continue to pray. Wish you all the best.

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Kaj these are early days go with it. Prof Mason told me after radical surgery like we both have had the body takes two years to settle down. A lot has happened to the digestive tract .

Gaviscon a liquid may help over tums.

Your “join” may need a stretch. The anastomoses between stomach and throat.

You may try ranitidine instead of omeprazole ...

But you are back at work after such a short time you are frankly amazing! Well done things will for sure improve over time and it’s great the tumour was benign .

Time for you to go back to your surgical team with the issues you raise good luck and well done.

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I had my total esophagectomy at the age of 32, am 43 now, I had chemo first as I was stage 3/ query stage 4. I am also a type 1 diabetic. I did go on to have my children post chemo and surgery. The first year is the hardest, I still have issues with milk but it depends on the person which causes issues. I can have two courses of food at this stage, I am a normal healthy weight.

It does get easier - just give it time.

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Hi well done being so young and experiencing a big op. You have to take things slowly with the eating. Small portions and regular times. Some foods don’t digest as quickly as others. Did the dietician at the hospital give you any guidance on what to eat. If not ask the dietician to send out the diet after the op or look on the OPA site. We all lose a lot of weight but it gradually settles. I too get a lot of burps and noisey bowels. I do take Gaviscon advance at night and Lansoprazole twice a day. The pain in ribs and op sites do take time. Breathing exercises to open the ribs up helps.

Good Luck

Debbie

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Hi Kaj,

I was 32 years old when I had a similar op. Firstly, you’re doing amazingly well considering the complications and only being a few months post op.

Advice

- take your time before getting back to work.

- you can take various anti-depressants to have the side effect of weight gain (amytriptyline 25mg per night - speak to a doctor). This will also ensure you get a very good nights sleep.

- to avoid the belching, avoid sugary foods/milk for a few days and see if it settles down.

- your stomach is probably about the size of 2 eggs, so that is typically what you will be able to eat at a single sitting (it will increase over a long period)

- have you got a dietitian/nurse specialist you can get advice from? There should also be a local OPA support group.

- your doing well. Get some support as it’s a big change!

Jay

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Kajeo

Sit back, tighten you seat belt as it going to be a rough ride!

You have just experienced one of the most complicated procedures undertaken by medical experts. Everyone who has experienced this procedure will face extremely challenging issues for sometime to come but, don’t worry, it will improve.

You must focus on several factors:- eating small but regular high calorie meals (dairy in particular). Exercise, challenge yourself to walk short distances at first and gradually increase the distance. Try isometric resistance exercise, as this will help to maintain muscle volume.

The ‘Wedge’ or ‘V’ pillows are essential, also try using a normal pillow lower down the bed to stop you slipping down.

All the issues have mentioned will gradually decrease over time and, eventually, you will start to feel better. I am nearly six years post-op and I still have one or two problems, which may never go away completely but I have learnt to live with them.

As for your weight, you will probably never get back to your pre-op weight. However, many of us similar-like folks prefer our new slimmer look.

Keep going, keep challenging yourself and, most importantly, try not to worry. You will get over this with help and encouragement from family and friends.

Best of luck

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Hi Kajeo - I was 27 when I was diagnosed with Oesophageal Cancer and had 3/4 of both my stomach and oesophagus removed so have been through similar to you - the first thing I will say is that 3 months is a VERY short period of time and although things may be horrible for you at the moment trust me when I say they DO get better.

There are a lot of different types of acid suppression drugs to try so speak to your doc and they'll try you with a different one, everyone is different and it's rubbish feeling like a guinea pig but you do just have to try the different types and find one that works for you - also the timing of taking the tablets can help so experiment with that too.

I'm now nearly 5 years post op and although my life is completely different to what it was before it is more than manageable and definitely enjoyable - I know what my body can and can't tolerate and it's more an adjustment of mindset where you stop thinking about what you can't eat and focus on all the things you can.

I returned to work (as an engineer) full time 4 months post op and have since completed countless triathlons of varying distances, 5 half marathons and various long distance swimming events - I cycle to work and go to the gym most days a week.

Its a tough and long road but you'll get there, like I said it's very early days in terms of stomach / gastro recovery so chin up - you'll get there x

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Do you have a wedge pillow? The OPA has a good offer on them at present.

I can't add much to the excellent advice you have from others except that walking was the way I got fit again. A lot of walking.

On eating keep trying. If it works one day it might not work the following day and vice versa. What you can and can't tolerate will vary and you will get better over time

Haward

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As far as expectations go, you will get better, but much more slowly than you would have thought.

Your new stomach will not get any bigger, so you will always have to eat differently from before. You will punish yourself if you overdo things as your new system will not be able to cope, but it is trying to adjust and will eventually train itself to cope with things at what hopefully will be an acceptable level. The vagus nerve system has been cut, and this throws out lots of aspects of the digestion, sometimes temporarily.

Your energy levels will be low for a long time because healing takes so much out of you. But gentle progressive exercise like walking, and perhaps physiotherapy if you need it, can be helpful.

There is a booklet 'Life After Surgery' that will be worth reading through every so often. opa.org.uk/downloads/docs/a...

Sometimes the aches are because of how your arm was positioned whilst they were doing the surgery. It will improve over time, as will the cuts/stretching of your ribs. You probably have to learn to try stretching them with deep breaths, but do not overdo it as it will probably make you cough, but you have to persist. The nerve damage can heal, but it does take quite a bit longer than the other aspects like surgical scars.

People typically lose a lot of weight, but it does normalise after a while. Try to eat for nutrition and what you can happily cope with rather than as the means to regain a weight target.

It sounds like you might have reflux, and it might be bile rather than acid, which would be why the Tums and Omeprazole won't work, so try and get yourself tested for this through the specialist nurse. Taking Gaviscon Advance will work for either acid or bile (an alkali). And it might be, that if it is bile, something like cholestyramine might help. Sleep propped up because gravity will otherwise tend to let the reflux flow towards your throat.

Eating does take a lot longer than before and I am sorry to say that you cannot really rush it. And it does have to be frequent.

The more of your stomach that you have lost, the less it will produce acid, which is essential for normal healthy digestion, but the problem is that you will no longer have your lower oesophageal sphincter that is part of your diaphragm keeping the stomach acid in its place. So if you are indeed producing stomach acid, you will always have an issue about how that rises and can be controlled.

Do watch the sugar intake. There is something called, very inappropriately 'dumping syndrome' that might give you insulin spikes an hour or two after eating. So you may have to eat as if your were diabetic and adopt a low GI index diet.

opa.org.uk/pages/factsheets...

Going back to work is a big adjustment. There is an information note for employers, but getting the balance and progression right is difficult. Most of us overdo things at some stage or another in the trial-and-error process.

You are probably feeling worse because you are putting your body through more activity and using up strength quicker now, and it is perfectly normal to have some depressing moments about how you are doing. This is normal. It is probably nature's way of making sure that we stop and adjust the speed at which we are doing things, pause to grieve for lost health and strength, and generally come to terms with everything that has happened. It has been traumatic, but you can and will recover.

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Thank you everyone for your replies. I have high hopes for recovery I just had no idea it was such a long time.

I meet with my surgery team only once a month. This coming Wednesday is my next appointment. I have a laundry list of things to discuss with them.

I understand chewing well, and tiny bits now. Will I be able to chew a mouthful of food eventually? Will I be able to drink more than just sips? Even water causes pain in my throat. Will there always be scratchy sore pain in my throat?

I don't think I was joined again up in the throat.. I'm sure it's just higher in my chest cavity.. my surgeon keeps saying he is happy with how much esophagus they were able to save.

Food was always such a pleasure, now it's a chore. I really miss a hamburger. I have been vomiting a lot recently and had to stop going to work, vomitting in front of work mates has been embarrassing. It's coming up black.

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I went back to work less than 6 months post the surgery, I know that it was incredibly difficult at first but it does get easier. I tended to go for low volume high calorie foods at first but I can eat a lot more now, I can eat a pizza which is not bad :) I had my children post the surgery and will be celebrating 11 years since the surgery in February :)

It does get so much easier,

Aoife

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Hello everyone, bit of an update... Had my first dilation this week. A little stretch at the anastomosis was needed but apparently it was needed more at my pylorus valve. I wasn't emptying food from my stomach fast enough to maintain a good eating schedule.

Swallowing improved drastically, able to chew (well) full mouthfuls of food. I can also drink more than tiny sips! First time today I was able to eat 6 small meals with little to no discomfort.

I actually over ate for the first time, definitely won't be doing that again. No vomitting but coldsweats and shakes. Passed after an hour or so, but certainly took everything out of me.

Supposed to contact doctor next week with an update on how it goes, he believes I'll need a little more stretching in a few weeks he didn't want to over do it, the difference is amazing even as it is now.

Still producing lots of mucus, but it does let up at certain times it isn't all day like before. I don't wake up feeling like I'm drowning in it.

Sleeping lots though, my throat is very sore and the pain meds they gave me knock me out.

Hopes are high :)

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