Hi @AJLang, I have just been diagnosed with gastroparesis - completely confused as to what this means going forward. I have no symptoms apart from erratic blood sugar that shoots up 2 hours after a meal. I'm not bloated, feel sick or have nausea but apparently after having a gastric emptying test it showed my stomach is delayed in emptying. You seem so upbeat and all I can seem to do is cry as have not idea how to manage this with my diabetes. My BG does go up after eating so I do need to bolus before I eat but then it seems to stall and then shoot up 2 hours later. Having read about gastroparesis on the internet I am now terrified and worried I will be eating baby food the rest of my life or that my symptoms will become more severe. I have only had diabetes for 11 years and have not other complications so surprised this is my first as seems to be when your blood sugars have been high for some time and my hba1c was always 6-7 before becoming erratic the last year. Sorry I'm rambling but just feel so lost. Also what do you do when you have a hypo? Hope you can give me some advice - Many thanks Anna
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Gastroparesis?
- Thread starter Anna1
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trophywench
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AJLang
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Hi Anna I’m sorry that I haven’t replied sooner but I was trying to think of a suitable reply because my gastroparesis has the nausea, bloating etc. I’ve had to learn a lot by trial and error how to manage it. First of all many “ordinary” diabetic consultants do not know much about how to manage gastroparesis unless they chose to take a specialist interest in it. The same applies to hospital DSNs. When I looked at the stuff on the internet it was scary but it doesn’t need to be as bad as it looks because it does depend upon how it affects you as an individual. There are medications for it but the two that I’m on - domperidone and erythromycin can potentially cause serious heart problems. But after discussions with my partner I choose to take the medications because it gives me some quality of life. With regard to the diabetes Trophywench/Jenny is exactly right. Before I had the pump my BG was going up to 30 a few hours after I ate, I was having to bolus six or seven times a day/night to get reasonable levels as well as two basal injections each day, I don’t think I would have survived without the pump. My situation may be very different from you so I’m not advising that you do what I do - I’m just saying what I do which is to have 0 or 1 unit of bolus upfront for my evening meal and I then combine this with a five hour extended bolus during the night and much larger basal levels than normal from 1am to 5am BUT this has taken me several years of experimenting to get right for me and my body and lots of times it doesn’t work right.. The really important bit is to split your bolus so that you don’t risk a bad hypo not long after you’ve eaten because otherwise the glucose from Coke, Glucojuice etc struggles to get through the food in your stomach to stop the hypo - I’ve had post meal hypos that I’ve had to to every 15 minutes to eventually get above hypo level after two hours. During the day I don’t eat much - a sandwich with one slice of bread is enough to fill me up and I may snack a couple of times later in the day. When I eat small amounts eg 15-20 carbs then I tend to bolus it all upfront and then correct any rises two hours later. But that is because this works for me with the medication that I’m on. If I have a larger lunch, which I do if I go out, then I feel quite uncomfortable and need an extended bolus plus corrections for several hours afterwards. I’m sorry if this sounds complicated but unfortunately it is - although the gastric emptying study did suggest that my gastroparesis is severe. But I definitely don’t eat baby or puréed food, nearly always enjoy a nice evening meal with my partner and like some people with gastroparesis I keep putting weight on rather than losing it (although I do have quite a few calories from wine 🙂. Low fibre, lots of finger prick tests, a pump and understanding how your own body works are the key lessons I’ve learnt from managing gastroparesis. Please let me know if you have any questions - I will try to give shorter answers next time 🙂
Thanks AJ that is really helpful. Im seeing my gastro consultant tomorrow for an update but my slow digestion is rather bizzare I can eat quite a large meal and bolus all of it up front and my BG will shoot up (which I thought meant my stomach was digesting pretty quickly) but then 2 hours later it shoots up again. I had the Gastric emptying study done privately as my consultant did not believe I needed it. They gave me mashed potato with dye in it and then took a scan over 1 hour. They said if more then 50% remained after an hour then my digestion was slow which it was. The strange thing was that as soon as I ate the mashed potato my BG shot up to over 16 so not sure how that means my stomach is not digesting properly. Hopefully get some more answers tomorrow. Difficulty is that endo doesn't know much about Gastroparesis so not sure how they will be able to help me with my levels. Slightly freaked out by the hypo thing as I live on my own and as I still bolus up front for much of my meals I'm scared this will suddenly change and I'll end up with 6 units too much and unable to treat the hypo due to the issues you mentioned - I thought (or hoped) liquid would somehow get through quicker. I have a pump but feel like I need say 6 units up front and then another 2 units 2 hours later but the dual option on my pump does not deliver 2 units later merely delivers 2 units throughout the 2 hour period which means I still have that spike after 2 hours. I have had a couple of times the more classic symptoms of gastroparesis when I ate a huge chicken kebab and chips and bolused and my BG dropped below 7 within minutes and kept going down. I ended up drinking glucojuice and it then started going up and went up to 16 or something. Luckily the glucojuice did work on this occasion. Sorry I'm rambling - I really don't want to lose any weight (as on the skinny side at the moment) so the thought of only eating one sandwich a day would really be difficult for me. I just hope that this is not a progressive disease and that my symptoms don't get severe and I end up in hospital (yes I too did the dreaded google thing and looked online). Thanks again and sorry for going on 🙂
AJLang
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Hi Anna sorry for short reply but I’m quite tired at the moment. You are definitely not rambling. The whole thing with gastroparesis is that it’s erratic, there aren’t any patterns as to what happens.Just to say that when I said a one slice sandwich that is in addition to a snack plus my evening meal. I’m glad that you had the gastric emptying study done so you can discuss it with your gastro consultant tomorrow. Don’t worry about the hypos - my other half is absolutely wonderful but does not wake during the night so I deal with the hypos by myself - they don’t happen often for me but I do make sure that I always have three bottles of Glucojuice/ small cans of full sugar coke upstairs with me and, of course, you can turn the temporary basal rate down to 0 for a short while. It just gets boring dealing with it and of course it always goes up too much afterwards 🙂 Are you able to afford a Freestyle Libre at all because that can help you track patterns but, in my personal experience they’re not as accurate as finger prick testing so I use both. I also get scared about it being progressive but touch wood every bad bout I’ve had of it so far has only been a blip - scary at the time but it has resolved itself each time. Obviously the key is to keep blood sugars under control but easier said than done with gastroparesis. But you will be ok. I’ve had gastroparesis for nine years and I still managed to have a gastronomic tasting menu meal for my 50th - I ate smaller portions for each cause and it affected my BG levels for 12 hours but I flipping well enjoyed it 🙂 I hope you get answers tomorrow. Please let me know how you get on xx
Ha ha keeping blood sugars under control - did I mention I’m also peri-menopausal - I’ve had the worst year of my diabetic life and it just keeps on giving - 10 years of great control hba1c of 6.5 - 6.8 then everything changed and last hba1c was 9.2 - I’ve tried everything but I either go up to 16-18 or I drop low - my levels and insulin requirements change daily and with the drops came hypo anxiety - I’m better then I was but just can’t seem to get good numbers as they are never stable - hence the worry about progression - you seem to have done so well and to be able to control your BG with gastro on top of everything else is amazing - if I correct after a high I drop low can’t get it right
trophywench
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Well the short answer is to reduce the amount of your correction doses ! I'm having a huge upheaval with base rates, bolus and corrections rates since absolutely everything dosage wise has changed - it's stayed changed for nearly a month now so it isn't a temporary blip - and that happens at the drop of a hat with or without gastroparesis.
AJLang
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I don’t cope as well as it seems but I’m stubborn with it because I know that if I don’t fight to get it as right as I can then it will make the gastroparesis worse. I test a minimum of every two hours when I’m awake. If I start going low after a correction then I try to have Coke or glucojuice to stop me going into a hypo. As Trophywench said if your corrections are always making you low then reduce the amount of the correction. Experiment with multiwave/extended bolus/ temporary basal rate functions. But where I completely sympathise with you is that most people don’t realise how crazily erratic gastroparesis can make blood sugars. My insulin rep said that a lot of people with gastroperisi give up, I can understand why, but please don’t be one of those people. Analyse what you are eating and how if affects you. Is it low or high carb each meal? In my experience semi low carb works ok for me ie approx 100g carb a day but as I said I eat fairly light during the day. Eat low fibre - although that appears unhealthy I believe for gastroparesis that is vitally important because otherwise the food stays in your stomach for much loner. I know the fear about gastroparesis hypos, they are extremely scary. But if you don’t overcome the fear you won’t get the HBA1C down - but as I said try to treat a lower sugar before it becomes hypo. Do you test your levels during the night to see what is happening. I found that to be very important for me ps I’m also menopausal so I do understand the challenges.
Hi again,
I tend to eat about 120g of carbs a day - I still eat normal meals but will be substituting fibre for low fibre - on all the websites I’ve read (trying to educate myself) it says liquids should still digest normally so hoping hypo treatments will work - not looking forward to taking 6 units up front for a meal and then crashing with 6 units inside me but don’t have a choice as need to bolus up front or it would shoot up - this morning ate 2 toasts with smooth peanut butter and a youghurt and even with 7 units I’m at 15 2 hours later and gave myself an additional 1 1/2 units 1 1/2 hours later and still sat on 15 so trying to figure things out - your help and advice is invaluable so thanks so much - when you had your test did they do it in an hour? Most websites say 4 hours but mine was just 1 hour
Also who do you see for gastroparesis as I saw a gastro specialist privately for the test so not sure where I go next for advice and monitoring - think my GP needs to refer me to gastro through NHS but every department makes no mention of gastroparesis? Thanks Anna xx
Hi just had my results and apparently I have mild gastroparesis - consultant says most people get diagnosed as they have classic symptoms and unusual to be diagnosed on blood sugar swings alone. I do notice though that I can't eat heavy meals in the evening as then my stomach is really slow to digest. He said my condition may not progress further but that I should work on getting my BG down - well I am trying!! I did have a curry for lunch and only took half my dose up front but then ended up going up to 18 so still need to tweak all my levels and ratios. Problem is I use my basal to help get my BG down after the 2hrs that novo wears off and then of course if I don't eat it then drops quickly. It's so difficult to get right. Also because I'm very lean I struggle with pump sites - had pump for 6 months and all I am using is my stomach where I already end up with small bruises. Tried my upper bum and thighs but my BG always starts to go up in those sites - out of interest you say you correct when you start to go low at what level do you start correcting? I am rambling again lol - Happy Birthday by the way xx
I tend to eat about 120g of carbs a day - I still eat normal meals but will be substituting fibre for low fibre - on all the websites I’ve read (trying to educate myself) it says liquids should still digest normally so hoping hypo treatments will work - not looking forward to taking 6 units up front for a meal and then crashing with 6 units inside me but don’t have a choice as need to bolus up front or it would shoot up - this morning ate 2 toasts with smooth peanut butter and a youghurt and even with 7 units I’m at 15 2 hours later and gave myself an additional 1 1/2 units 1 1/2 hours later and still sat on 15 so trying to figure things out - your help and advice is invaluable so thanks so much - when you had your test did they do it in an hour? Most websites say 4 hours but mine was just 1 hour
Also who do you see for gastroparesis as I saw a gastro specialist privately for the test so not sure where I go next for advice and monitoring - think my GP needs to refer me to gastro through NHS but every department makes no mention of gastroparesis? Thanks Anna xx
Hi just had my results and apparently I have mild gastroparesis - consultant says most people get diagnosed as they have classic symptoms and unusual to be diagnosed on blood sugar swings alone. I do notice though that I can't eat heavy meals in the evening as then my stomach is really slow to digest. He said my condition may not progress further but that I should work on getting my BG down - well I am trying!! I did have a curry for lunch and only took half my dose up front but then ended up going up to 18 so still need to tweak all my levels and ratios. Problem is I use my basal to help get my BG down after the 2hrs that novo wears off and then of course if I don't eat it then drops quickly. It's so difficult to get right. Also because I'm very lean I struggle with pump sites - had pump for 6 months and all I am using is my stomach where I already end up with small bruises. Tried my upper bum and thighs but my BG always starts to go up in those sites - out of interest you say you correct when you start to go low at what level do you start correcting? I am rambling again lol - Happy Birthday by the way xx
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AJLang
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Hi Anna I’m glad that you only have mild gastroparesis. To be honest with you I could not manage that size of breakfast without the gastroparesis let alone then having a curry for lunch. What are your BG levels like before you eat? Is there any reason why you’re not trying a multiwave bolus? My diabetic consultant referred me to a diabetes consultant in another hospital who specialises in gastroparesis but I still needed to teach myself a lot. But definitely the key is definitely to get BG levels down. Do you accurately carb count, try low carb options, check your ratios and basal. All of those are important with or without gastroparesis. With regard to your comment on hypos and liquid I’ve explained the problems I’ve had and how I deal with them. With regard to the pump I only use my tummy but it may be better to ask pump specific questions on the pump thread.
Hi, Thanks for all your comments and information. Is multiwave bolus the same as Square wave? I only have two options Dual wave or Square Wave. As I need quite a lot up front when I eat I can't use Square wave as that only delivers little bits of insulin over a certain period and so I am currently experimenting with dual wave to see if this can work. It's either that or just manually delivering another 2-3 units 2 hours later. You are lucky to have a diabetic consultant that specialises in gastroparesis that's really amazing - I did use MDI for 10 years before the pump and had excellent control and had all my basal and carb ratios worked out. Then I hit a wall a year ago and now struggling to find what works. I need very little basal throughout the day but if I eat carbs I need much higher levels to bring me back down after food so again I am constantly testing and trying to work out basal and carb ratios - add to that the fact that I am peri-menopausal and that I have dawn phenomenon it's a struggle. My levels before food is ok I usually start at 8-9 by the time I have breakfast and the same before lunch and dinner so again am tweaking this with my dawn phenomenon. Like I said thanks for all your advice and sorry if I've gone on a bit but finding people in similar situations and hearing their stories really helps. Anna
Hi Anna,
I've also just been diagnosed after months of hospital stays/tests. What has your diabetic consultant advised you? With hypos i make sure i have plenty of Glucogel at home and try to use liquids vs foods because of the slowed digestion. My doctor has advised small and regular meals throughout the day which i find impossible with work! Are you on any medication? Reading the forums has scared the life out of me when i see people have had this for years and all the complications! I hope you're doing well
Hi EKS, So sorry to hear you have been diagnosed with this as well. My diagnosis is currently mild so I have not been in hospital - my consultant said it is a lot more common then people realise but that people don't get diagnosed the scale from mild to severe is quite large as well. What were your symptoms? As I understand it it is a case of managing the symptoms and keeping your blood sugars well controlled. As my only real symptom at the moment is erratic blood sugars after eating and poor appetite my gastro consultant did not think I should go on any medications but he told me there were 2 or 3 out there which would help control symptoms and help move food through although unfortunately no cure. He also said the diet would be smaller meals throughout the day but like you I find that quite hard I also work full time and as my blood sugar is so erratic I spend atleast a few hours after my meals trying to get my BG down so not sure how I could fit in a further 3 meals in that time although smaller. Are you on a pump or MDI? Like you I scoured the internet and scared myself to death so ended up here and as you can see above AJLang offered a lot of good advice. Think staying away from internet does help, although there are plenty of people who have had it for years and seem to manage and eat relatively normally. I also understand that the condition can come and go so you can get flare ups which then settle down. It's all very scary so totally know how you feel. I have glucojuice and coke to treat any lows but hypos scare me more now as well. Where do you buy glucogel? As for my diabetic consultant he is very poor in any advice or help so my gastro consultant is referring me to a private endo for further advice so I will let you know if he comes up with any good suggestions. Like anything with this disease I guess it's trial and error and learning how our bodies react but I have been struggling for over a year and my BG is still high so I am not the best person to offer advice but I know what I should do just not sure how I can get there. Feel free to moan or ping me a message anytime but like you I am very new to this
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Hi AJ - another question sorry - just wondering how you keep your weight on as I apparently need to eat 2000 calories per day just to not lose any more weight (read that on a website). I am 5ft 11 tall. I try and eat all my calories in 3 meals so as to ensure I get enough but I still don't always manage the 2000 and lose weight as soon as I don't meet it. My concern is that now with the gastroparesis (although mild) I should eat 6 smaller meals per day but just can't see how I will manage this and take insulin. I spend the time in between my meals getting my BG down as it spikes high so not sure how 6 meals much closer together would work. Also these are supposed to be low fat so again less calories. Sorry if I am a bother with all these questions but don't really have many people to turn to who can give any advice. Thanks Anna
AJLang
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Hi Anna I’m not sure how I keep weight on, I don’t like that I’m overweight but I’ve always struggled with my weight and my diabetic consultants have said that they don’t want me to lose weight. I have read on gastroparesis Facebook sites that there are people who struggle with losing weight and others who struggle with putting it on. I’ve explained in my previous posts how I eat my meals, . My other calories are from liquids - there are a range of liquid drinks you can get but I haven’t got any specific names. Don’t forget that high blood sugars also have the potential to make you lose weight. With regard to your earlier question a multiwave is when you programme in your carbs, the insulin is based on your carb:insulin ratio and it then boluses x amount up front and the rest over the number of hours you have set. For example, and this purely an example, if it calculates 8 units it could be five units upfront and the rest is delivered over three hours. This is an example. Nothing which I have said is medical advice - all medical advice should come from your physicians. What works for me may not work for anyone else and could be potentially dangerous. Perhaps use the guidance that you’ve been given by your pump clinic on changing settings etc or speak to your DSN/pump nurse.
Hi, thanks again - don’t worry I’ve had diabetes for 11 years so know anyone else’s choices will not necessarily work for me and don’t take it as medical advice just people sharing experiences - I’m trying to work out a way to reduce my BG during the day as after every meal I’m around 14 and it takes ages to bring it down then it’s time to eat again which means I’m generally high all day and this has been going on for past year - I’m experimenting with temp basals and carb ratios but so far nothing has really worked - I had great control for 10 years previously but that didn’t stop me from getting stomach issues - until I can get my BG down to at least below 10 I think it will be playing on my mind a lot - I’m seeing a private endo specialist next week to see if we can work on my numbers - thanks again and just know that I admire all the work you’ve put in and how you’ve managed over all these years and have such amazing BG numbers - I can only imagine the amount of work it’s taken you - all the best Anna
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