I am 10 years on from my Ivor Lewis operation and been doing ok
I have now been told I am pre-diabetic.
My weight is 10st 6lbs which I struggle to maintain. My problem is diet and a lack of understanding from the nurse at the doctors surgery who could not understand what I can and cannot eat.
How do others deal with this.
I'm sorry, I don't have an answer for you, but I would like to know (if you don't mind) whether you have experienced much dumping since your surgery. I am curious/concerned about the possible connection between dumping syndrome and later development of diabetes.
For what it's worth, I would recommend that you insist on being referred to a qualified dietician, who specialises in patients who have had gastric surgery. I would not accept a mere nurse's advice -- at least not about something so complex.
Hi there,I am in same predicament. I explained to my Dr about dumping syndrome as she told me to lose weight which I don’t need to do . I have no answers , I just keep check not too much sugar in foods.
Hopefully someone on here will know more.
Best Wishes
Debbie
Hi Quince
I’m sorry I can’t help with your main question. However, I echo what FKM100 says about seeing a dietitian. It is essential you see a dietitian who specialises in GI symptoms. In my experience dealing with our post- oesophageal issues, Dieticians often give general information not specific to the problems we face.
I was told by my gp that my cholesterol had gone up even though I,ve lost 2 stone since my op and no longer eat pastry cake sausage burgers etc as you say the doctor doesn’t understand the difficulty associated with eating it’s a catch 22 situation.
Thank you for your comment. Difficult for us all
I find there is a complete lack of understanding from the medical profession about how bad dumping syndrome is and how much it affects a persons wellbeing. I wish I had the answers for you but I deal with dumping everyday and no rhyme or reason to what will or will not trigger it for me. What is fine one day is not the next.
I do think because we have less stomach and no oesophagus we cannot absorb food and nutrients correctly so our bodies suffer.
Best of luck, I feel for all of us going through our new lifestyle but forever grateful to be here to do it.
How lucky we are to be here. The medics do not understand and to be told by a diabetic nurse to follow the diet sheet which even suggested a 800cal per day! I do very well but just can’t eat so many things including most fruits. Carbs work well for me to eat but appear to create sugar level issues. My plan is to see a dietician to have time to go into all my problems. The issue is finding one that understands. Thank you for your comments.
I am also amazed about how little the medical/ nursing professionals know about dumping syndrome. As previously advised I would ask for a specialist dieticians opinion . I am 9 months post Ivor Lewis and still often have to go for a lie down after eating and suffering the consequences.
I don't think the average GP knows about the risk of developing OC after years of acid reflux, certainly not in my experience
Many thanks for your reply. Sadly gps don’t understand which is understandable but it would help if they listened to try and understand
Hi Quince,I am nearly 6 years post op and have had the same problem of being told I am pre-diabetic even though I only weigh 7 stone and struggle to maintain my weight. I never ate many carbs or sugar anyway so knew this couldn't be the problem.
After a lot of research I discovered that low iron levels cause HBA1c readings to be too high. I went on 3 months of iron pills and the HBA1c readings went back to normal. This happened again a year later and once again I took iron pills and the readings went back to normal. Have you had your iron levels checked? Doctors are supposed to check your iron levels when they do the HBA1c test but they rarely do. I guess you know that your body cannot absorb as much iron from your diet after the operation as you have less stomach acid so it is very common to need iron pills.
Hope this helps
Thank you so much, your information has been so helpful.
Well, I am 4.5 years on from surgery and still only weigh 7st 8lb. Last year the gp put me on a pre diabetic course. Following the diet advice caused weight loss so I stopped following it strictly. I have had dumping to some extent since surgery and am still under the hospital. GP permitting, I am soon to start on enzyme replacement ( creons). Reading the booklet from the hospital dietitian who has recommended this, it could solve several things at once. Definitely insist on a dietitian who has experience of patients following Ivor Lewis. Good luck
Thank you so much you have been both helpful and reassuring
I am 13 years post op and was also diagnosed as prediabetic. I had a call from my GPs from a nurse with advice to go on a course which involved exercising and eating to lose weight without even seeing me! Like others here I do not need to lose any weight! When I finally saw the nurse she had no understanding of the consequences of our ops and dumping. So I ignored any advice and this year's blood tests showed a slight drop in prediabetic levels. I was interested to read Gilly23's information about iron levels as I have low iron levels too! I shall certainly take the advice. I think we need someone to research the causes of prediabetes levels in us! We are not like the rest of those who develop diabetes and there seem to be plenty of us saying the same thing on here about the lack of medical understanding.
Hi.Thank you for your brilliant reply. So many similarities, when the nurse at gps practice saw me she was visibly shocked that I certainly don’t! need to loss weight. Unhelpful to say the least and had no idea about dumping and don’t think gp does either. Have been very interested to hear about iron deficiency which I will be having check out. Also hoping to be able to see a specialist dietitian. Some research for us all would be so useful.
This could be a great PHD topic for someone
Hi - I’m nearly 7yrs post op - I’ve been pre diabetic for a few years - discussed with doctor and I just manage with snacks - I’ve also had 5 iron infusions since surgery - I can’t get above 7 stone but I actually look healthy and dress in layers - I try be active and outside a lot and stay away from doctors as much as poss - still have an annual consultation with surgeon - I get a full blood work done twice a year - all the best
Thank you Quince and all who replied for a very informative post. I am approaching eight years post Ivor Lewis and occasionally suffer from dumping syndrome. For me the cause is usually going too long without food, then eating a little too much because I am hungry. I am 54 years old, eat very healthily and do a lot of cardiovascular exercise.
I too have recently been told that my blood sugar levels are too high. I regularly see a surgeon, who specialises in the Ivor Lewis op specifically. He tells me my levels are high, and that I should aim to reduce this, but not so high to cause immediate concern. This surprised me because I don't consume large amounts of sugar. He did tell me that if I want to eat sweet fruit, I should wait two hours after a regular meal.
I am also interested, and grateful to Gilly23 for the information on Iron. I will ask my doctor about this next time I see him. I also recently had a bone density test, because of the long term effects of PPIs, which showed that to be slightly low, but again not too low to cause immedaite concern. I have been given a calcium supplement for this and take a magnesium supplement daily.
I know I am incredibly lucky to be alive, and healthy enough to live a relatively normal life. However I do get a little down sometimes by the lack of understanding and frustrated by living with the consequences. I am single and am finding it very hard to enter into another relationship, mostly because I am scared and feel that no-one will want to be with me. I also very often feel that friends, and even relatives, seem to think that I'm perfectly alright now and can live a completely normal life. I try to explain my circumstances, but I really don't think people grasp the gravity of the situation.
Anyway, keep on keeping on hey! As so many have said, we are so lucky to be alive and relatively well.
Hi.Thank you for your wonderful reply. So many things and symptoms we all share. Like you some friends think all is normal but eating is never easy and has to be planned. I will also be asking my gp about my Iron levels and the effect on pre diabetes which seems completely understood. I will also ask to see a specialist dietician. Like you all my diet is good and I can’t afford to loose anymore weight.
I will feedback when I have any info but look forward to hearing from all anytime.
Dear Quince, sorry to hear you’re Pre-Diabetic. What made the doctors determine this? Blood sugar tests using pin pricks?
Having said that, it’s unrealistic unfortunately to expect a doctor to understand our surgery and it’s effects. I’d imagine we are a very small population of survivors.
Get in touch with your GI nurse specialist as they will have a much better understanding and be able to advise.
Sorry I don’t have a solution, but wishing you the best.
Jay
Hi thanks for your comments . This started with a normal yearly blood test.I will be contacting a GU nurse.
This really annoys me, as it just demonstrates the lack of understanding and ongoing care there is for us. And in answer to people who said 'see a dietician' I did see an NHS dietician and it was absolutely pointless. All she really did was prescribe me some drinks, either fortisip or ensure, which are just full of sugar and actually brought on a dumping episode every single time. Their answer this? Sip it slowly over a period of time! Direct result of this alongside other unhealthy advice like 'add cream to everything'? My teeth are now rotting away, and I've had to have three extracted in the last 6 months. The lack of ongoing care and understanding is so demoralising. After that I paid to see a private nutritionist, but she obviously had never seen anybody who actually wants to maintain or even gain weight, and after trying to follow her advice I ended up with a recurrence scare because I lost quite a lot of weight very quickly! I now have such a sweet tooth, which is totally the opposite of how I used to be, and now I have raised cholesterol. I suppose the answer is to eat like a gym bunny, lots of protein and not so much fat and sugar. 'Little and often' is the mantra, and they say have six small meals per day rather than 3 main meals.
Hi there!
I get dumping. I spoke the GI nurse as my gp could not help me and some of my dumping episodes were not due to food. It was due to constipation and my body was having overflow diahorrea. I eat meds to deal with my bowel issues and this has helped me alot.
Even the meds taken for this has been through trial and error in order to reduce the side effects of the meds and to alleviate my issues.
I think after the op we need to consider and deal with all aspects of our body to ensure we can manage everything and have a better balance of our issues.
I have also got delayed hypoglycemia since having the op - where the blood sugar spike after a meal.
I have also pgone down the dietician route and I agree there is not alot of knowledge out there for people like us. I have had my first appointment and she explained that I was experiencing alot of different issues and it would be difficult to resolve.
This op was mainly done on the older generations in the past and now alot of the younger generations are being diagnosed and treated much earlier but we a suffering a variety of issues and there is no knowledge out there to help us.
I also found there was no long term info re FLOT and how this affected the body - if there is i still haven't found anything yet.
I am really lucky to be alive 
Regards
Swallowing difficulties 5 months post-op
From a Carer’s Perspective 
Reactive hypoglycemia
