I'm 18 months post op and have read just about everything I can on the after effects of UGI ops & difficult digestion after. I've also spoken to surgeons, doctors and dietitions. What conclusion I have come to after considerable thought is that nobody seems to understand what is happening in the digestion system post op. When I ask about bile, insulin, sugar, bacteria, dumping etc there is hesitation and obvious difficulty in answering the questions.
So either they do not know, or perhaps everybody is different and react in different ways. Now I do not want to be critical as my treatment before, during and post op has been excellent, but I've a nagging feeling that not enough is being done to diagnose all the varied digestion problems. I have seen on OPA the questionaire about sugar intake as this does sometimes cause problems. But doesn't more need to be done to treat the horrible post op digestion problems by analysis in detail of a number of people.. I wonder if anything is in progress? Are there current medical digestion trials in progress anywhere? I know the OPA has regular meetings which does help some people if they can get there.
I saw my surgeon a few days ago and explained by difficult digestion, wind, occasional pain, bloating, dumping etc and he just could not comment. My doctor & previous doctor could offer no suggestions either. Removing cancer from the UGI is not the full answer but just half way.
Wish I was ultra rich and could sponsor more in this field.
Written by
medway
To view profiles and participate in discussions please or .
Hi there, just over 4 years ago I had a total Gasterctomy (Roux-en-Y) and since then have had numerous issues with eating/digestion/side effects/anemia etc.
I know this procedure is not the same as esophagectomy but my understanding is that a lot of the complications are very similar. I found the following article on the Internet - Post-Gastrectomy: Managing the Nutritional Fall-Out.
It was such a great help to me over the past few years and answered many of my questions & concerns. It is certainly worth reading through and printing off for future reference. I’m doing pretty well now, living an active life and keeping as fit as possible, thanks in part to the management guidelines and information given in this article.
steve which is the roux en y wonder if thats what I had? I had the total gasterctomy and part of my oesophagus. I too have all the above you talk of Medway spent the first 2 or 3 years after op trying everything and decided it was getting me down too much so accepted it and tell myself now after 6 years used to it.
Maybe something new you could start up Medway find a sponser! Good Luck.
Having been in nursing all my working life,looking after patients with cancer including oesophageal cancer did I really understand it all, probably not.Then I had oesophageal cancer, operated on and post op. the complications most people experience.
The cancer has gone but the side effects are here to stay. They suddenly kick in and just as quickly disappear. It is a new way of life. After 19yrs and listening to many patients at meetings perhaps we have to accept we are all similar but all different and react in different ways. Sadly the digestive system is no longer intact and has to cope the best it can. Life is good and the side effects do get easier. Do other people understand probably no more than I did. Sally
Hi, what I have found through my own experience is that the symptoms many of us face a similar to IBS and diabetics. I see IBS as an umbrella term for any digestion issue. Having read up on both IBS and Diabetese I took the relevant parts of information and applied them to myself. I also flicked through the BNF (prescribable drugs) and found drugs that had the side affect of weight gain. I admit a lot of this is self experimentation, but I had no choice since nothing else was working.
It would be amazing if there was some focus on our particular issues due to our operations and I know that there are many medical students investigating these types of issues. The royal London is running a trial on hyper flexibility which they believe may affect gut motility. I assume there should be a register of all trials that we cold review?
My next area of focus is Tens machines having read about a trial whereby mild currents can help the nervous system send signals across the body. I'm guessing the same must apply for the gut.
Well done Jay for doing the experiments and reading up as much as you can, a very positive path.. By the way 2908 is very relative to me, it was the date of my op.
What I find confusing in my case is the unpredictability of 'attacks' or feeling unwell and trying to find a root cause is impossible. I eat something one day and I'm fine. Next day I eat the same and feel unwell. I cannot find a pattern. However, I have noted that activity, perhaps mowing the lawn, and my digestion seems more prone to attack.
Jays comment about trials is interesting and perhaps what is missing is feedback to the public rather than just doctors who no doubt are flooded with new information and cannot take it all in.
There is no doubt that the subject is complex as I have noted the number of different drugs being proscribed.
I too sufferred from unpredictable boughts and could not find rhyme nor reason why he same meal one day would b fine and the following not so good. I eventually came to the realisation that I was always pushing myself to eat as much as possible. I've now learnt that I must space out each meal and fill the gaps with snacks. I now see my gut as a large hose pipe. Put too much down and it'll block. Put too much stodgy food, it'll block. Blockages prevent the wind escaping, causing cramps, bloating and pain. 10mins before each meal I have two cups of tea to help push the previous meal through and clear the way for the next meal. If I'm feeling slightly constipated I add extra sugar in my tea, which thanks to our gut change acts just like stool softening drugs. The tea also gives me the energy and hydrated to keep upright once I've finished eating, thus not having to go for a lie down after eating my meals.
If I have a cold, I know that the mucus will drip down overnight and block my gut, hence Sudafed at night when required. Any mouth sores almost definitely means gut sores, therefore no onions or chillies for a while and have some gaviscon or ranitadine.
Replaced butter on my toast with good olive oil, which soothes my gut. I try and get one or two eggs omelette in me each day as the protein helps moderate my sugar level and allows me to have something sweet later.
I love to problem solve and my gut had been the most challenging- mensa would be a doddel in comparison.
I went to a meeting at the Royal Marsden this week where the oesophagectomy / gastrectomy patients had a talk from Ann Muls, the Macmillan nurse consultant in the GI and Nutrition Support Unit, and Lorraine Watson, a specialist dietician. Their unit (only one in the world) is set up to address the chronic physical side effects of cancer treatment, including changes in bowel function due to alterations in specific GI physiological functions. It is wider than oesophagectomies and gastrectomies, and one of the issues they have is dealing with the consequences of pelvic radiotherapy where 23 Upper GI symptoms have been identified.
The symptoms that their patients rate as most difficult are urgency, wind, diarrhoea, incontinence, abdominal pain and rectal bleeding.
So, coming round to this excellent question - Do They Know Why? - I think the answer is that some people know why, and the answer is something like a) the traumatic effect on the digestive system of chemotherapy, radiotherapy and surgery; with some effects being caused by loss of vagus nerve, loss of lower oesophageal sphincter valve, physical re-arrangement of organs and clser proximity to each other (eg liver?). And b) after about 12 months from surgery, a proportion of patients facing continuing problems related to the change of bacteria / chemicals / insulin / malabsorption / shortfall of vitamins & minerals.
So what starts out as a cancer / surgical topic later turns into a gastroenterological problem. Those problems are complicated for the medical professionals as well as for us - there are umpteen causes for diarrhoea. We may have more than one reason for our symptoms, and sometimes the trial and error method works - sometimes for the reason we think, and sometimes for a different reason (eg stopping dairy products might work because the fat or sugar in them upsets us rather than the lactose itself). So the GPs do not meet people like us very often, and are perhaps considering the effects of the major surgery and the cancer treatment rather than specialist gastroenterological issues. The surgeons are concerned about how well the surgery went, and whether the scans have come back OK (which tends to be the priority after all).
So the result is that we have cancer treatment successfully, but do not end up restored to where we were beforehand. Sometimes this means minor irritating problems, but sometimes they are significant issues that affect the quality of life.
I do agree that we need some kind of research that would put the current state of medical knowledge into an easily understood format for ourselves and for medical professionals.
In the US, most of the spending on medical issues is related to drugs and devices, as these are very lucrative fields where research can pay off in profits. The other portion is federal funding into issues that are seen as most common and/or in the public eye.
Issues related to somewhat rare circumstances that are not big markets for drug or device companies are typically underfunded and underappreciated. Even having surgeons or gastroenterologists that specialize in esophageal or motility disorders are rare, because these are not as "sexy" as bariatric, Crohns, or UC, just to name a few.
The esophagus is seen as a boring tube that does a boring job. It only becomes interesting when it doesn't work right. The only upside is that it lives in a particularly rough neighborhood, with heart, lungs, and mediastinum all close by. So at least thoracic surgeons have this in their area of expertise, but most don't perform much of a volume of esophageal procedures except at certain major referral centers.
I think it will always fall to us with major esophageal disorders to help the others in our situation, and that is why I think sites like this are very important. Keep up the good fight.
I think your comments are very valid Alan and once surgery is performed and cancer removed and hopefully for good, the side effects are not investigated fully. As you stated there are a lot of things that are unexplained or not understood which is why I asked if there were any trials in progress i.e they select say a dozen patients with similar ops and monitor food and lifestyle habits. Then you have to chose a different type of operation and do the same. In my case with the Merendino Interposition there are not many, if any, who have had it so the search for more guinea pigs is required.
I hope somebody undertakes this type of research as the after effects are a big problem for sufferers and we need to understand more. Surgery is only half the solution. Thats why the OPA exists to help people post op and sometimes pre op..
When there are these meetings/research projects, It would be nice to see the conclusions written down somewhere rather than just passed from person to person..
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
