I have sent previous comments so this is a follow up. I can have a jejunal interposition with 50% stomach with reflux issues OR the Roux on Y with no stomach and no reflux but there will be dumping. My op is next monday and I must decide.
The question is how long does dumping last? For ever, goes away quickly or gradually? Or can it be prevented completely by careful dieting? If I can prevent dumping I may go the Roux en Y way.
Hi,
I lost 75% of my stomach 5 years ago, regular and consistant dumping lasted for about a year, then slowly eased off but has not stopped completely, I can control by carefull eating and avoiding certain foods but this takes time as a trial & error exercise as everyone can tolerate or react to different foods.
My dumping can be triggered by refined sugar in cakes and sources, we now only use cane sugar for cooking and in drinks.
I also had reflux which slowly got worse at the 3 - 4 years mark, now cured by recent procedure but this has increased dumping again slightly, this was the known likely outcome of surgery and my choice.
From my experience, my choice would be to live with the dumping, it will ease off over time.
I've suffered both problems over the years and had the choice, I can live with the odd dumping, as can be controlled a little by diet.
Reflux I could not live with as it was more restrictive during the day, sleeping was a problem and constant taste / burning throat was not nice.
Hope this helps, others will answer soon,
Good luck on Monday,
Best wishes,
Dave C
Hi Dave. I recently posted a question abouthaving the Roux-En-Y operation delayed for reflux after having the Oesophagectomy back in 2004. I have just read your post answer to Medway and you mention that you had 75% of your stomach removed. Well in 2004 i had the Ivor Lewis Oesophagectomy which left me with 25% of my Oesophagus left and the stomach turned into a tube and was left receltly with reflux. What was the recent procedure that you have had to cure the reflux. You see allthough the bottom half of my stomach has gone narrow the food will eventually go down over time and it is this food trapped in the top half of the stomach tube/25% oesophagus tha is causing the reflux. The doctors are reluctant to discuss doing the Roux-En-Y to cure the reflux, but i wish that they could do something as i am getting desperate and feel very reluctant to eat at all. Please help me!!!!
Christine Hulmes
Hi Christine,
Sorry about the delay in getting back to you.
The procedure is called a Pyloroplasty, it is a permament widening of the muscle which exits the stomach.
I had a couple of attempts with endoscopy which stretched it and then an injection of botox, both were only temporary fix so decision was made to go with the surgery (keyhole only)
This was done in April this year and I've only had reflux 3 times since, 2 I know was caused by eating Chinese Sweet and Sour Chicken, I love it but it has never loved me back.
The trade off was a slight increase of the dumping syndrone for 3 months but has now eased off again.
It was the same for me with the slow passage of food out of the little bit of stomach I had which was causing the reflux, it seemed to be a cycle of 3 days clear, then reflux for a couple days during which my eating slowed down, then another 3 clear days and so on.
Have a chat with your consultant and dietician as sometimes just a diet change can work and in some cases this procedure in done during the initial surgery at some hospitals.
Hope this helps and please let me know how you get on.
Best Wishes,
Dave C
Thank you Dave. Am seeing Dietician on Nov. 9th for a chat about my diet as i am only eating 2 snacks per day now. Ok, i have a jejunal feeding tube but i can only turn the mls per hour rate up so far to compensate for lack of eating and now my bowels are rebeling in that the jejunal feed is going into small bowel too quick. Can't win. My weight is now begining to suffer so something has to be done. Will see if my consultant can see me sooner than next April. Thank you. The food takes so long to go through my stomach tube that i am concerned now. The resulting reflux is bothering me too.
My surgery which was a radical oesophagectomy was 5 years ago. I had 75% of both my stomach and oesophagus removed.
I have both dumping and reflux.
Both are controlled by a mix of medication, diet and lifestyle choices such as eating slowly, not moving around quicklly after meals, sleeping in an inclined position etc.
The most important thing to realise is that no 2 people are the same and there are no formulas or guarentees with this type of surgery.
I'm not familiar with the particular surgical choice you are being offered so I can't personally give you an opinion on that.
I would strongly advise you to discuss the choice with your medical team and take the decision that seems best for you.
In my case I would say that the reflux is easier to control than the dumping but as Dave said earlier he feels the opposite.
I know it's a really tough decision and I wish I could be of more help.
Hopefully the different insights will help you ask the questions that help you resolve it with your medical team.
Good luck and let us know your decision.
Larry
Hi Medway, I can't give you any advice, but whatever you choose I'd like to say good luck. x
Thanks for these answers and I hope for more. As jejunal interposition is being offered and is not that common, the description I have been given is for when the top of the stomach and a short length of Oesophagus is removed. A a length of jejunal is put between the remaining stomach & oesophagus. Apparently the jejunal is wrinkly & helps to reduce reflux. At an OPA meeting recently a comment was made "not less than 10cm". This obviously depends on how much is removed. Opening of the lower valve after the stomach was also mentioned but I'm wondering if this will cause dumping in addition to reflux.
My surgeon has suggest jejunal interposition as reflux is less debilitating than dumping especially if you lead an active life. So, I think this is what I am going for assuming nothing worse is found duting the op. I will just have to live with the reflux.
There is no doubt that the choice is between the 2 evils and things will not be the same in the future. It has also been mentioned by many people that everybody is different with different results after surgery.
Good Luck, hope you get all the info from the medical team and this website to help you to decide. My lower bowel acts as my stomach, I too had the reflux and dumping, but not as bad as the early days, got less with time. I must look at my notes, not sure how much of the oesophugus I had removed, not as much as I read I don't think.
My tumour was on the join of the o/ stomach.
Best of luck! Speedy recovery!!
My experience is of severe dumping which has gone on since 2004 without any indication of letting up, although the impact has varied over that period. I find it effects far more of the automonic functions that it is currency recognised to do. For example; stress, mood, sleep and relaxation responses all seem to be affected.
This is not really a direct answer to the original question, but maybe when we face the prospect of surgery like this, we have quite a lot of issues to face which come at different levels:
There is a technical side of it - ie what will the operation consist of, and how will the 'plumbing' get re-arranged, and with what effect. I never had to face that because my own case was emergency surgery, but I do now that people vary enormously in how much they want to know about exactly what the surgeons do.
Then there is the prognosis - what will life be like afterwards? I do not think there are any guarantees. Lots of people have a good quality of life afterwards. But not many of us are as strong as we were before we were ill. We sometimes manage to do remarkable things, especially those who run or cycle long distances, or even dig out trenches, but the stooping and heavy lifting is a problem for a good many of us. So resuming life exactly how it was before, physically, is the exception rather than the rule.
Will the operation get rid of the cancer - immediately and also in the future? The answer is often a positive one if the cancer is caught early, but the anxiety about recurrence is inevitable. There are many for whom the cancer does not return, but there is no guarantee. Personally, I think that this is a big issue to face, and probably harder to get your mind and emotions around than the other points. You will never know for sure of course.
This diagnosis is traumatic in itself. Are we grieving for the prospect of loss of health? I think we all have to go through that, and usually it needs some help from our loved ones, and often a counsellor as well. That is absolutely normal. But hard, emotionally. We can get caught up with the immediate run of appointments, clinics and everything else that the hospital system throws at us, but eventually, sooner or later, we have to come to terms with the prospect of being ill, and not knowing whether we are going to recover completely - or not. People cope with all this in different ways, but there is definitely an element of stress and anxiety about it all, as well as the physical / medical side. And you probably cannot avoid coming up against the emotional / mental issues to some extent sooner or later.
How do your spouse / partner/ family / friends cope with the prospect? It is not an easy thing for them at all, and you can find that there are not many friends who can talk things through at the right level, without avoiding the issues, or being completely evasive, or making flippant or inappropriate remarks. But coming to terms with things yourself, and with your wife/husband - who also have their own demons to fight over it all - is probably the first step towards facing other people. I do know of some who have kept their illness a secret from their friends for just this sort of reason, and I can understand why. We sometimes say 'It puts things into perspective'.
We seem to cope well when we know, realistically, what we are going through, with a reasonable understanding of what is happening to our bodies, and without 'burying our heads in the sand', or,at the other end of the scale, being obsessively anxious about various twinges that we suffer along the way.
So all of that makes us optimistic for the very best results for this op coming up! We send you all the very best wishes!
AlanM--Your writing is so eloquent! You are right to point out that there is an element of stress and anxiety about it all, besides the physical issues! I have lost over 50 lbs. in the 8 months since my Ivor Lewis surgery. I feel like I'm getting to be skin and bones--wasting away. Everyone is commenting on my appearance--after the first 25 lbs. the comments were complimentary, and now they're more likely to comment on how skinny I've gotten.
I went back to work full time after two months but am now going to quit my job as I find it too difficult to deal with my weaker condition and fatigue as well as eating difficulties while working full time. I'm hoping that once I'm more in control of my schedule I'll be able to concentrate on getting some weight and stamina back. I'm still experiencing frequent dumping--find I not only can't eat much sugar (no more than 10-12 g. in a food product at a time), but also am not tolerating fatty foods at all. It's a constant guessing game of what is going to cause dumping and making choices about what I can try to eat. There are whole aisles of food in a grocery store that I can't even consider! I hear professionals and recovering patients say that things will get better (no one says when, though), but then read posts saying it is still a struggle for people after several years, which is kind-of discouraging.
Peg. It is correct that everyone reacts differently, but it would appear that you and I share very similar symptoms. I'm almost two years from the surgery and can't get any of the 80lbs back that I've lost since then. I do feel better reading that I'm not alone in this fight as I am getting so frustrated.
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