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Oesophageal Patients Association
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9.5 year esophageal cancer survivor and type 1 diabetic having issues with hypos

I am a type 1 diabetic as well as a 9.5 year esophageal cancer survivor - does anyone else have type 1 and have issues with random low blood sugars?  I have a lot of issues with hypos.

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Is this a recent development or has it been going on since your IL?

What is your care  and medication regime for the diabetes?

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I have had type 1 diabetes (insulin dependent diabetes) since I was 10 and am on multiple insulin injections.  I was diagnosed with oesopghageal cancer when I was 32 and am 42 now and a mother of a 6 year old and a 4 year old (she will be 5 within the month).

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I do not know enough about diabetes to make much of a useful comment, other than wondering that it must be an issue about balance of glucose, regardless of the underlying cause; that it would probably take quite a lot of monitoring to get your levels within reasonable limits and to understand precisely what was causing the hypos; and that the things that affect the glucose / insulin levels eg high / low glycemic index / load diet might well apply.   It would certainly need a diabetes specialist to have a look at you, ideally one who was familiar with post oesophagectomy patients.   I wonder if it is an issue of having diabetes complicated by the oesophagectomy rather than vice versa after this amount of time?

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My problem is that while there are quite a few survivors I know who have type 2 having type 1 is rare and I have not found an endo who has a knowledge of it even though I go to the best one in the country - I make do myself but it is not perfect.  The post esopghagectomy diet does not help and the fact that my digestive system is very odd does not help.  I also had children post surgery which is another thing.

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You've done incredibly well considering.

Presumably you are metering?

Have you thought about keeping a chart of your blood sugar against injections AND mealtimes. It just might reveal a pattern and an attendant correlation.

Post IL how does your feeding regime (diet and timing) differ from before?

My hypos almost never occur other than 1.5 to 3 hours after the first meal of the day and I can control this completely by remaining seated after eating for 2 hours -- this prevents the premature downwards avalanche of the contents of the stomach tube which is what overloads the duodenum's sensory mechanism; resulting in a burst of insulin which causes rapid uptake of glucose from the blood into bodily tissues. Naturally this methodology depends upon the good fortune of still having a reasonably patent lower eosophageal sphincter after the pull-up.

I do not medicate otherwise. In order to avoid sitting for, say, 4 x 2 hrs I do not follow the regime of little and often, but rather eat only twice- brunch of slow carbs and a large evening meal. I take multi-vitamins and put on weight easily; despite having also lost my  gall bladder, the side effect of which is chronic diarrhea.

For a busy Mum I guess that such a  pattern of repeated rests is not an option.

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I normally only eat in the evening, if I am lucky I may eat twice a day but I do not have the luxury of taking things easy for a while post eating so I just tend not to eat :(  I had all of my oesophagus taken out as the tumor was in the middle.  I do find that food does not digest at the same time every day so that makes my diabetes interesting as I can not predict so I test a lot but I still miss out on some low blood sugars.  I also still  get dumping!

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I'm a busy mom too... I don't have type 1, but I was diagnosed with a pancreatic tumor that secretes too much insulin- kind of the OP opposite problem than you have... I've had to severely limit my carb intake and watch how much I exercise and sweat... I know what you mean about sitting and I have to do that only when I eat a meal or drink a meal with more than fifteen carbs which I try not to do... I found this out through experimentation... I've had something weird happening lately where I've dumped and started trying to vomit with five minutes, like a rapid dumping, and I haven't eaten... I don't even have a chance to get nauseous... I'm hoping it's from consuming dairy... I'm going to experiment with that... I may just be using esophageal spasms again too, I don't know... Anyway, if you're not producing enough insulin or you're insulin resistant, my first instinct would be to limit carbs and get in as much protein as possible... I'm not a doctor, but, for me, concentrated sugars (in some protein drinks), milk and dairy products and products with flour and yeast (although sometimes I can tolerate flour tortillas) in them are No nos... And frequent snacking... I told someone the other day, it's weird how if I sit and eat all day long now, I lose weight... My surgeon explained that when I'm constantly moving and not consuming, my body begins starving and goes into a type of stasis and my body will hold onto anything I get... I won't gain weight, but I won't lose it either... With kids, I have three and two grandchildren, it's important to get in the protein and limit the carbs so you don't dump, but you have enough energy... Ive started drinking at least one protein drink a day- 9 carbs and thirty grams of protein- I know I need at least seventy g of protein, and I'm building up a little at a time, but I consider this an accomplishment... And I feel better than a month ago... I'm still exhausted, but I'm better and as long as I know why I'm doing it, it's worth it.

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I produce no insulin what so ever so am not insulin resistant - high protein is not good as I had kidney damage from my total esopgagectomy surgery. I actually need a fairly high carb diet (I take insulin).

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See, youre completely opposite from me... I understand why though because you need the carbs, however have you noticed a difference between simple and complex carbs? The simple/highly concentrated ones make me sick whereas the complex ones don't... I think it's because one goes into your body faster I believe and I don't think our bodies can tolerate that... I don't know if that helps, but I tried... I hope you find what you're looking for... I've had problems with my kidneys as well, but it's been because of antiinflammatories with my lupus... Too much causes protein in my urine...

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Also, that would cause problems because protein is what builds muscle... Are you getting in your B vitamins and folate? Those are what build blood...

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Hi, my husband had this operation 6 months ago and has been a type 1 diabetic for 30 years, we have found that he can crash low in minutes only to go very high minutes later, we have seen all of the diabetic experts four in total, but none of them could answer how to sort this out, so we have been left on our own, we find if we can limit dumping his blood sugars are better, he is now on 1 unit fast acting in the morning and 1 unit long acting before bed, that’s it, so hardly any insulin now being taken but we’ve found through trial and error that’s the only way to keep it under control, I do feel that we have been let down by not having guidance on his diabetes but it would appear this operation is rare for a type 1 diabetic and you just have to keep experimenting until you find what works for you and forget all of the regimes that you followed pre operation regarding your diabetes.

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I got the Dexom recently and it has changed my life for the better, it finally means that I can get a decent nights sleep as it wakes me when I am going low...I am also a longer survivor at this stage. Best wishes to you and your husband,

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Search this forum for reactive hyperglycaemia. Have you tried creon as most patients will have exocrine pancreatic insufficiency (EPI) and taking these enzymes usually helps balance the blood glucose around meals. Not sure if that will be the case when going reactive.

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Hi, is the dexom like the freestyle libre? We asked for this but were told it’s not available on the NHS? Are you in the uk? If so did you get this on the NHS? If not where did you get it from and do you feel the benefits worthwhile to the cost?

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The Dexcom gives you alerts when you are going low so you do not need to always scan it - I have only had it for a month so far and do not know how long my health care will fund it as I will have to go back to the old system if it not funded long term :(

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Thank you AoifeMcc for your reply, I will return to the GP to see why it’s funded by some nhs trusts and not others? Sounds like a good idea especially for me as I get up in the night to test his blood, on another subject my husband still has back ache quite bad, is this normal after 6 months? The GP still prescribes morphine so assume it’s normal?

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