Oesophageal Patients Association
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Abdominal Pain 1 year post op esophageal cancer.

Hi Guys, hope everyone is in a good place this morning,well it has been Exactly 1 year since I had the op (trans-hiatial) over in Athens (I live in Crete) and I must say, I cannot complain at this moment considering the few people I know in the Unit, that never made it this far and the prognosis I was given at the start of this journey. I have had 6 months Chemo (3 days continuous per week) 3 moths of radiotherapy (3 days per week) however apart from the Usual pains/discomfiture/hair&nail loss (all grown back now) I seriously consider myself blessed that my last CT scan has come back clear of disease.

All I need to do now is find some Muscle definition (I lost 5 stone from diagnosis) so much more walking is a given for me.

As I said, pains etc you adjust to along the way,I am Lucky I can almost eat what I like (though Obviously Limited to the amount) but recently I have been getting the Occasional pain in my abdomen,now this pain can last up to 2 hours and I can honestly say it is truly agony, I have to control it with my breathing and I certainly cannot sit or lay down I think (being presumptuous) that I know what women go through having a baby. I was so scared the first time i had this pain that my wife called an ambulance however when the pain went after a couple of hours in the hospital,I felt such a fool, I thought that there was something amiss with the surgery. I have noticed that the pain has something to do with eating/drinking,maybe if I eat just that little bit too much,that's when It comes (not often just Occasionally) the last time it came was when I was so thirsty i gulped a glass of water the way i used to do before the op,again it lasted 2 hours. Obviously I have to work this out for myself but I was just wondering if others get into this dilemma. would appreciate you thoughts.

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The only pain like that I've experienced was when my gall bladder was giving me trouble and I had to have it taken out (keyhole surgery, relatively short recovery time) - if it happens when you eat fatty foods that might be the case - but I'd go see you doctor about it, regardless of what it is, being in pain for 2 hours at a time is no way to live your life!

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It is fairly natural to think that this must be something gone wrong with the surgery, but you are well past that stage now. It sounds, possibly, as if it might be something like colic. If you eat or drink too much at once (ie what you used to have as a portion and the speed at which you used to eat) you can get air trapped in your digestive system and it is painful, as babies would tell you if they could talk. There are some things that will be the new normal for you - eating little and often, chewing things thoroughly, and taking your time over eating: otherwise you get punished with these pains. It is probably a good idea to keep a food diary for a while to see whether some food causes more trouble than others. If your toilet habits are normal then that will be a reassurance.

You are quite right about exercise. Don't overdo it, and it will be ages before you recover your stamina, but walking is very therapeutic.

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Hi OPA thanks for reply, yes I am fairly sure that it is me not thinking about how I eat on occasions,I just forget sometimes, I am also fortunate that I can eat most foods though the pasta/bread etc does have too much of a "feeling full" for me,and most people,I should Imagine. I am very fortunate regarding having No toilet Issues at all, most of my stomach was removed and the rest was used as my digestive tract therefor my Intestines were not touched in any way.

Well,as I said, I have had my first CT results since no treatment (chemo/radio) and they have come back clear which Obviously is great news for me,I am not one to dwell on what if's etc but when I first read about this horrible disease all I got was terrible prognosis and seeing people in the unit where I live in Crete that have not made it or are having a really terrible time of it, for me, scares the life out of me and I am now wondering, when?-not if,the Cancer will return and of course I get depressed that I am being so selfish and ungrateful that I am still able to live a pretty much normal life. I have told my doctors this and they and all they say is that everyone is different and that all through my journey they have been surprised at how well I have adapted to everything they have thrown at me I am known as the "Smiley Englishman" which is good but when I got home from the unit I was so depressed and to be honest I still have bouts of this,I feel guilty that my wife is not having the Life that we planned when we moved here and yes I know,Not everything goes to plan but I am all over the place sometimes,in my head and yet my wife is so solid behind me,I couldn't ask for more,so I start feeling Guilty that I get depressed when I should feel grateful to be here, I just hope this passes.

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In one way it is a result of statistics, isn't it - but I know lots of people who had their surgery many years ago and enjoy a pretty good quality of life, and however difficult it might be about numbers, it is almost meaningless when it comes down to an individual level. The fear of 'it coming back' stays with you automatically and it is probably only a matter of how large or small that element of anxiety is that stays within your mind. Not recognising the fear within yourself does not make it disappear entirely.

In my mind people who have had this surgery go through a traumatic time, and in some ways what some people suffer is almost like an equivalent of post traumatic stress syndrome, except that you would call it something different. You and your wife do inevitably go through a process of coming to terms with your illness and what has gone on since your surgery because there is a mental track to travel along as well as the medical one. And a difficult process it is too. I think most people feel grateful for a positive outcome from their treatment, but it is not natural to feel unduly 'grateful' about it all the time. You are entitled to feel a bit of melancholy when you think of what you have been through, and you do not have to feel cheerful all the time. 25% of cancer patients whose treatment was successful medically need some form of professional talking therapy to help them over this natural feeling of depression afterwards, and 10% need medication as well. So if there are facilities like that in Crete, you and your wife might like to think about that as an option? Recognising how you feel and being able to express it is a good part of the journey, so you are making progress with it.

There are also a couple of interesting articles by Peter Harvey called 'Now the Treatment has finished - Then What?' and 'The Perils and Pitfalls of Positive Thinking' which may also be helpful opa.org.uk/resources.html

I am sure that the doctors in Crete are just as pleased to have a patient doing so well as their counterparts in Britain would be.

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I agree with opa-alan, I am 4 years on but in recent months I have experienced a traveling gut pain like you describe. I know it is something I eat and thought at one time it could be wind. I recently looked at the FODMAP site and have followed some of their advice to reduce wind, I also liked a muesli breakfast, I now have porridge. So far over three weeks no pain. So crossing fingers.

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Hi, yes I get this and it's almost always due to over indulgence or eating drinking too fast or together. It's agony for about an hour, needs a lie down etc. As well as pain there's dizzy ness, sweating, palpitations etc and every time I curse myself for doing it. Best wishes and good luck on your journey. Hilary (wales)

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Hi Hilr yes I am sure you are right re-the overindulgence and yes I also get the Palpitation sweats etc -I must learn to accept that everything has changed inside -God I am so stupidly stubborn sometimes,time for a rethink, methinks,ha ha. Take care.

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Sounds much like dumping, saliva glands go into overdrive, nausea etc. Only solution, leave the table, find a bed and try to sleep.Two hours usually does it for me. The other pain starts early morning and lasts around two to three hours, gradually diminishing. Happened to me today, first time in three weeks. Just feels like something gradually moving through the digestive system and yet several hours after eating. Keeping a food log to see if it helps.

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Hi davidap I am not an expert on dumping but I thought you would have to have problems re-bowels (correct me if I am wrong) and I get no problem in that department,also surgeon only used stomach for substitute esophagus, never interfered with my intestines at all. As I said it sounds like I am not eating correctly,on occasion also I find it better if I stand or walk around until the pain subsides-no way I could lay down.

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I was told about dumping post op. In early days it was too easy to overeat. Dumping is when stomach cant cope with volume and sends un-processed food onto the next stage, which is not used to un-processed food. It usually takes a couple of hours to come right. The pain you and I are getting comes hours after eating and is not dumping

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HI David, yes I am pretty sure what I am experiencing is not Dumping,as I said, it really is debilitating,fortunately It is not often,I suppose I have to be a little more careful what and how, things go down my throat. getting a little fed up with having to go back to my wedge pillows though as I cannot sleep on my side but hey! still Here lol.

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I am keeping notes now re what I ate or drank the night before. Will keep you posted if I get anything concrete. Sleeping is difficult even 4 years on. I have grown use to two hour periods. I wake up wondering why or what woke me up. But I do go off again once I have found a comfortable (relative) position.

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I have the same problem if I overeat. They say 6 small meals a day? But I often eat too much! Then I do get some pain in my stomach, not a lot of discomfort though, but have to lie down and maybe sleep for awhile. I get a lot of 'wind' also when I eat or drink. Have to keep getting it up during a meal. Figure that may be what causes the pain? I had the operation March 2016. Other than that doing fine and pretty much normal. I could not stand the wedge pillow. Bought an expensive one before the operation and used it a couple times. Then I bought a Hospital Bed, used, pretty cheap. Best thing I ever bought! Head and foot raises with a button. I am able to sleep flat without any problem. Have never had acid reflux? But still raise my head.

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I know 4 years ago. I hope your ok now.

I had same problem after my esophojectomy. A year later I had pains in my left side... sometimes take me to my knees. What it ended up being was a reoccurance of my esophogeal cancer. I had a tumor growning on my diaphragm. Luckily I got diagnosed quickly. After chemo again they were going to remove my spleen, part of my pancreas, the rest of my stomach (only one 3rd there anyway) and harvest some of my intestines to use as my new conduit. I guess there is a bunch if bad things in that area... aorta, vien from liver, pancreas etc... I was very lucky it was a lymphnode that had attached to diaphragm and they were able to remove it with margins of course. Im still here so far. They gave me 6 months to a year to live if no treatment and surgery now skys the limit I guess.

SO don't wait if your having pains go see doc and get a ct. Although my tumor didnt show up on ct or a pet scan. They found it after a routine colonoscopy found I had a small blockage. They were going to resect it when they saw tumor. After an MRI they had a treatment plan. I guess all my stars aligned!

Good luck out there

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