I’m two and a half years post McKeon’s oesophagectomy and have continuous early and late dumping which is manageable having been prescribed Creon - which has made a huge difference. I still get severe hypos that come on at random times, particularly after eating bread and protein (cheese on toast, beans on toast, eggs etc. My blood sugar levels drop as low as 2.00 and I get visual disturbances. I’m hoping to trial Free Style Libre system which links a blood glucose monitor to an app on my phone and sets off an alarm when levels are low. Has anyone of you wise people tried this? Did it work? Did you get it on the NHS or have to pay privately?
Any advice gratefully received!
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Golfer51
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Hi I am 9 years post ivory Lewis and still suffer from dumping syndrome as it part of my life and I totally understand regarding hyperglycaemia but only just realised my visual disturbance is also related to the same condition which has happened more frequently lately!!!
Sorry to ask a daft question but how do you know you have yellow bile? Does it come up? Do you cough it up or is it like being sick but yellow? Is it definitely distinctive from say an infection. Thanks, sorry for asking but just wanted to clear up something
Hi it’s not a daft question I can only go on my own experience and by asking others yes it is yellow or dark orange, mine comes on if I lay on my left side by accident in my sleep, It can start as a cough but then it goes into being sick quite a few times and it burns around the top part of your throat and chest, I wrap a cold flannel around my throat as this helps calm things down a little as your body is beating quite fast, and you are left so tired . I hope this small version helps in some way .
My visual disturbance is half the vision in my left eye shuts down. As if someone has put a piece of black card over half my eye for a matter of seconds. Hard to describe. Took me a while to make the link. Definitely connected to the hypo.
When I go hypoglycemic I get this “white spot” in my vision. It’s exactly the same symptom as if you’ve looked into a bright lamp and then look away. You still see this light spot for a while.That’s what happens to my eyes when I go too low.
Interesting that quite a few of us have these hypos with visual stuff going on. Got the Libre 2 FreeStyle today on trial with some interesting observations.
Hi I’m 10 years on and my levels drop well below 2 if I don’t take dextrose tablets as soon as I recognise the signs that my sugar levels are dropping, or if it’s after supper I just go to sleep my body will sort itself out. Dumping is something that I have learned to live with, vision and hearing and the ability to focus clammy feeling and a brain like treacle all happen if it gets low but you can learn to recognise the signs and mitigate the effects. Now I use dextrose tabs normally a packet at a time. I seem to get bouts when it’s a very regular occurrence and times when I can go weeks without an occurrence. I also use acarbose an older diabetic medicine if I get a run of dumping, taking it for a short while, seems to calm things down again and I can carry on as normal. In my teens I was hypoglycaemic and used to have pockets full of dolly mixtures as did my friends. Old fashioned boiled sweets work well too. The important thing is learning to recognise the signs and deal with it ASAP. If I’m out for a day in meetings etc I tend to avoid food ( not that difficult when you don’t feel hungry ) thereby avoiding the likelihood of dumping. I just drink tea all day. I always have dextrose in my bag, pocket, desk drawer, car, it’s my saviour. 15 mins sitting quietly taking dextrose will bring things back under control although you may feel a bit like a horse has kicked you for a while. It’s saved many a trip to A&E when people with me have panicked. Like you Creon helped me lots around the 2 year mark and I have a glucose monitor with strips from my doctor that I carry with me to use in case I’m feeling yuk but not sure if it’s due to sugar, and to make sure my levels stay stable after dextrose. It’s been a lot of trial and error along the way. Especially since it seems sometimes any food can cause it . Acarbose has been useful too but you need to learn how to wean it down again if you don’t want to take it forever. It’s not an expensive med so the docs are often willing to prescribe it. Be interested to hear how you get on with the monitor Good luck Lizzy
Thanks Lizzy, interesting re acarbose and I also have dextrose tabs and also get dextrogel prescribed to keep in the car etc. You sound as if you are dealing with it very pragmatically, I’m only just beginning to recognise the signs, sometimes too late. If i get a visual disturbance I know it’s going to happen but have had a hypo when driving on the M1 - nearly stopped in the slow lane thinking it was the hard shoulder and didn’t have anything to hand to take!! I also ended with Waitrose calling for an ambulance as I was fitting at the till, looking back I didn’t each much and had a couple of sweets as I was rushing.
I’ve just found this interesting I am 6 months Ivor Lewis op and I have them visual disturbances now and then thought it was migraines but no really headache after and only started after op do you think mine are to do with op bit scary they are x
Yes me too Von. I’ve never had migraines so it took me a while to put it together. I also get a mild tingling sensation which I’m picking up as a warning. Usually if I notice in time and act upon it I’m ok soon after.
I was discussing the symptoms of a hypo with a diabetic and she was saying that her feet went tingly when she was having a hypo. I now notice it too. Useful to know the onset signs before it gets too bad. I also get daily dumping of one kind or another but it's manageable now - once nature has taken its course. Creon is my life saviour. I take it after every meal or snack and certainly know about it when the next day if I miss it!
just finding this group and thread! My dad is 7 years post surgery and recently diagnosed with Reactive Hypoglycemia. Had dumping syndrome before and periodic dizzy spells but no RH diagnosis until now. Crazy! Started Acarbose a few months ago. Keeps his glucose levels lower (going high wasn’t an issue), but doesn’t seem to stop lows from coming. He’s on Creon and we were thinking maybe it’s part of the cause, digesting carbs. Are you all still taking Creon who were befor. Does it help or maken RH worse?
Post oesophagectomy the pancreas function is somewhat messed up, and the effect observed amongst the survivors is totally subjective due to the nature of multiple variables between the lot.
The hypos are dangerous to yourself and others if you are not able to detect forehand and manage the active hypo, using such as dextrose or alike.
acarbose requires taken 30min prior to food intake for it to stabilise the glucose function. This will also mean it will slow down the digestion and collaterally induce gases due to indigestion. have to self monitor and adjust.
Hydration is very important and critical key. Always ensure your body is more than adequately hydrated all other times. as while having food we are not bale to drink a lot water and rather not feasible for the sake of size of the stomach left. Note that the dizziness, vision blurring is also indication of digestion system extracting all fluids from other organs desperately to counter the blood glucose fluctuations. Only you can realise what is happening to you more better.
The monitors etc all fine but not better than self management. I now like many others on the forum, manage the hypos and hypers proactively.
Yes understood that self management is the key. I am slowly picking up the signs but sometimes that are so subtle it’s too late. Severe hypos and difficult to manage - I’m pretty active - very busy with golf at the mo, which is great but eating any carbs seems to trigger a hypo.
Two & a half years post oesopho-gastrectomy & I also experience the occasional hypoglycaemic event. Like others having dextrose tablets to hand helps to minimise the effects though still get caught out occasionally. The loss of some stomach function, increased speed of transfer of food through the stomach & loss of vagal nerve function all influence. Managing food intake & type is important & also relate to activity. Avoiding food for long periods I find risky & find nuts & banana when out & about (+water) works for me. Unsurprisingly it seems a lot of those on this forum are experiencing similar effects & have worked out what works well for them. Although we are all a little different, also seem to be a resilient lot. Best wishes to all in coping with the varied side effects 🙂
Hi Golfer51,Six months after my Oesophagectomy I started having seizures due to dumping/hypoglycaemia.After using 20 lancets a day and the seizures worsening I was referred to a Diabetologist who put a case forward to the CCG for a Libra freestyle as they were only available to type one diabetics at the time.
This was a game changer.I now can tell if my blood sugar is going down by swiping the sensor, it shows a arrow going down. I take gels/Dex tabs or jelly babies. What works best for me is 4Jelly babies and sit down for about 20mins. I also have been prescribed by my Endocronologist Diazoxide which I take a low dose because I got side effects. It took a lot of effort on part to find the right people to help because at that time nobody had came across Oesphagael patients going into Seizures.
This is very interesting and great to hear about the Libre system. I had to look up CCG as I wasn’t aware of the structure in the NHS. I’m getting a Libre on their free trial for two weeks, I’m sure the results will be interesting and it may throw up some alerts for when I need to take some jelly babies. They are pretty expensive to pay for privately. How long ago did you have your op? Golfer51
I had my operation in 2015.Six months later the seizures started. I had my Libre in 2018 . After a two week trial my consultant put the case forward for the funding.A big part of my case was the totall unawareness of the onset of the hypos and their frequency.
Are you using any type of Glucometer at the moment ?
Yes I’m testing my levels several times each day and before any activity or when driving. The trial Libre sensor should arrive any day. It’s a bit of a pain having to use lancets and the monitor all the time. Your two years on from me then. Good to get advice from fellow patients. Thanks
Hi Golfer51 - I have the FreeStyle Libre 2 system and personally love it - I used to have a standard finger prick glucose monitor but all that does is give you a moment in time whereas the libre gives you trends and as I'm sure you're aware our levels can change rapidly so the finger prick system isn't as helpful.I find that it gives me a nice level of reassurance of my levels and the app tells me the direction they're going in too (I often do a finger prick check to corroborate the data too especially if it's showing as really high or really low and I feel fine). I've also found it useful to keep track of how my body reacts to certain foods for example, for some reason, sometimes by blood sugars race upwards when I've had a meal with next to no carbs in it so I'm learning more about the balance of macros I need in each meal to try and keep me stable although it doesn't always work very well at least I'm trying!
The Libre 2 also has alarms (if you're ordering it yourself or asking for it on prescription make sure to state this as the Libre 1 system doesn't give this functionality) which is the bit that I like too although I can find the sensor and my phone doesn't always connect and then you lose the alarms and it's quite a loud alarm too which managed to wake me and my partner up twice last night which I guess is the point but it wasn't very welcome!
I have very low hypo awareness and so was given the libre system on the NHS (after I went to a clinic appointment feeling completely fine and by sugars in my standard blood tests were 1.2!). I know the sensors can be expensive (approx £50 per 2 week sensor) so if you can't get them on prescription and you like the reassurance of having them on then there are videos online of ways you can make your sensor last longer (basically a hard reset) which would bring down the cost a bit although I've never tried doing it before.
Hi Spanner16 - thank you so much for taking the time to reply in so much detail. It’s great to know that the system works. My trial pack arrived today - the FreeStyle Libre 2 and I’m going to activate it tomorrow. I’m hoping, that after trialing it for a couple of weeks I can try to get it on the NHS if it works for me!
No worries at all - just a heads up you might need to use some additional adhesive to keep the sensors on if you get them long term, you can buy something called skin tac which is a spray you spray on your skin before applying the sensor or you can also get clear plastic sticky covers (like a clear plaster) that you put on top of the sensor once applied - I got them on amazon for not much money at all because I don't get them as part of my prescription. Also I would advise getting some pre-injection sterilising swabs (Amazon again) to make sure that the site is good and clean, you used to get a single serve packet in the libre box but they seem to have stopped doing that!
I've been watching this thread with immense interest. Never ceases to amaze me just how little we as a group knew before our Oesophagetomies (Ivor Lewis of McKeon).
I had a T3N0M0 lesion at the bottom of my oesophagus. Ivor Lewis carried out start of 2015 - lost 1/3 oesophagus, 1/2 stomach and 57 lymph nodes.
Dumping
It took me approx 2 years but I feel I've mostly got my dumping under control. My Oncologist initially introduced me to Creon but set the dosage low. I then worked with a Nurse Practioneer my surgeon introduced me to - she told me to take much more Creon than my Oncologist had prescribed me. The example she gave me was that a 1/2 of a cheese sandwich probably needed something like 6 Creon's to handle the fat. I'm now taking 8 Creon 25000mg tables with each meal. If I'm eating something particuarly high in fat, protein or sugar I will take more Creon.
Visual Impact
I've also suffered from these in the past. Sometimes combined with what I can only call confusion and vertigo. I once had a sugar low whilst on the London underground home. I managed to get off at the right stop and started home - had enough of my wits about me to buy a can of lemonade on my way out the door and drank it quickly but ended up spending 30 minutes ambling around the neighbourhood I've lived in for 15 years completely lost - ended up calling my partner in tears - they hopped in a car and drove around before they found me. Very scary ! It's also happened in a US airport, or in the middle of the night in a Kuwait hotel room where I geniuinely didn't know my own name, where I was, etc. Again, a can of lemonade from the mini-bar sorted it.
My GP has given me a blood sugar test kit which I use with good effect.
I've also noticed a correlation between my heartrate and the onset of an event - my resting pulse is typically low 60's but, I've found that around 5 - 10 minutes before an event my pulse can increase to 80+. I've got an Apple Watch and keep an eye on my heart rate throughout the day.....
I'd be really interested in hearing how your App idea pans out.
Bile & foamy mucous
I also have the Bile issue - Orange/Yellow in colour as well as sometimes what can only be described as foamy mucous. I've learned that eating rice or too many carbs can result in the production of loads of this mucous so am now heavily cutting back on cards - specially rice.
From a medication perspective I'm taking opemrazole 40mg twice a day - this helps with general "acidity". Then, about 2 years back my surgeon prescribed Sulfracate 2mg twice a day - this has made a HUGE difference to me. Taken after a meal it creates a "raft" of foam which helps to stop stomach contents rising.
However, I still have issues with bile. I slept on my front most of my life so have a natural tendancy to roll whilst sleeping - regardless of medication this will result in a bile "event" which if caught early enough can be pretty much done and dusted or, if I'm heavily asleep when it occurs can result in 3 or 4 hours of retching.
I find that a can of diet coke will help wipe the taste away - more effectively than anything else. It also seems to neutralise the bile in my stomach.
Recently, I've found that a cup of tea works wonders also.
Wow AussiePeterinLondon, that’s fascinating and a very detailed response. I only take 2 Creon 25000 with each meal and one with a snack so maybe I need to up it a bit! Your confusion when having a hypo is well described, I lose the plot completely and it can be frightening. I also feel very belligerent when it happens so need to take stock without someone making me worse by helping in the wrong way. I’ll certainly remember the Diet Coke - I tend to want to slake my thirst by drinking a pint of apple juice. I’m actually having rice tonight…… making myself a monkfish risotto 😱 so we will see! Got some jelly babies to hand!
I wasn’t picking up the signs - my FreeStyle Libre trial pack has just arrived and with some excellent advice and tips from Spanner 18 I have bought some adhesive and plasters to put over the top to make it last as long as possible. I’ll report back after I’ve trialed it.
Weirdly I don’t get bile, much. It happens if I eat too late occasionally Gaviscon advance seems to help but once or twice I’ve had mouthful of acid whilst asleep. Nothing wakes me more quickly!!!! For the following two days or so I get a taste of blood which is frightening but it seems to calm down after that. I have had pretty regular endoscopes which are now just once a year.
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