Gastroparesis and diabetes

[And]

Hi I'm new had diabetes for 32 years been off work since October told I have gastroparesis but not how to live with it or cope, read a bit but really haven't got a clue can anyone help?

 

[AlisonM]

One of our other members has Gastroparesis too, I'm sure she'll be along soon and you can ask her any questions you may have. Welcome to the forum And.

 

[AJLang]

Hi And
Welcome to the forum. I've been diabetic for 45 years and have had gastroparesis for nearly six years. I have domperidone and erythromycin four times a day. Doctors can be reluctant to prescribe them because there is a risk to your heart but without them I couldn't eat without feeling awful and being sick. There is a risk that they become ineffective after a while but mine still work ok for me the majority of the time. You need your diabetic consultant to refer you to a specialist in diabetes gastroparesis - they're not easy to find but mine is based in Leicester. There are differing views about how gastroparesis should be managed and "ordinary" diabetic consultants don't seem to realise how complicated it is. After much trial and error and going on a pump my HBA1C has regularly been in the 6's but that has only been since I had a pump, without a pump I dread to think what would have happened. I know of somebody else who was diagnosed with gastroparesis and told that with it you can't achieve a HBA1C under 8.5, well I've proved that wrong!! My diabetic gastroparesis consultant also said that I should only have pureed food - well stuff that I'd rather have the medication but I'm always on pins that they will stop it. The reason that I need the pump is that if I inject hardly any bolus upfront for my evening meal the hypo is extremely extremely difficult to manage so I do a 6 hour extended bolus. Sorry I've realised that I've just waffled. Have you got specific questions? How severe is your gastroparesis? How was it diagnosed? Are you on MDI or pump? Within the medical establishment who is guiding you on gastroparesis?

 

[And]

Thank you taking time to answer was admitted to hospital twice early September extreme pain an found it really hard to breath, had been told it was gallstones. In hospital put on medication told to eat low fat low fiber diet and discharged (against my will I was still in pain wasn't eating an felt very ill)
Had appointment with my consultant 8 wks later who told me he thinks gastroparesis they will do auto immune blood test another scan checking stomach artery an he's praising me to someone else oh an not doing anything about my gallbladder.Diabetic nurse did say they would ring a few days after b e ing home I'm still waiting.
So that's all I know been like a hermit since so tired a lot of time easier stay in bed, starting to think even my husband thinks I'm a fraud. I need to go back to work so I'm trying to take myself off the medication hoping I can manage on diet alone, I've given up alcohol smoking an mostly eat toast.my consultant seemed happy with that "bland and boring"

Recognitions novorapid levemir omeprazole zapain metoclopramide

 

[AJLang]

Hi personally I wouldn't come off of the medication until they suggest other medication otherwise you risk being in a worse position. Are you able to phone the diabetic nurse? Is the test a gastric emptying study? This is the gold standard test for gastroparesis. Please try to chase them because you won't get the nutrition you need from just eating toast.

 

[And]

I've had a ct scan 3 ultra sounds an a camara with biopsy they can't be to worried my follow up appointment has just come through for 1st April ( no joke) before I was admitted with stomach lumps an chronic pain I was eating a normal diabetic diet admittedly very tired I agree with the doctors gallstones pain was kicked off by gastroparesis but now I feel I have been left to self help as I'm existing but not living . What I would like to know is are you ever pain free, lump free, bloated free, do u have normal days r u always tired or is that my pain killers , what do u eat that fits in with your diabetes?

 

[AJLang]

I'm sorry to hear that you appointment isn't until April but I often find that there is a long waiting time for many appointments in the NHS. I'm not sure what you mean by a normal diabetic diet ie when I was on Multiple daily injections prior to the Gastroparesis I ate a normal diet, not one that was diabetic specific but obviously counted carbohydrates. What are your blood sugar levels like? Usually with gastroparesis they are very erratic because of the delayed stomach emptying. I've spent ages analysing what works well for me because keeping blood glucose levels below 8 helps with the management of gastroparesis. But you also need to avoid difficult to manage post meal hypos if the insulin works more quickly than the food is digested. Hence why my bolus for my evening meal is extended over six hours.
If I eat small amounts of food I am bloat free the majority of the time and I rarely suffer from pain despite the gastric emptying study showing that I have severe gastroparesis. Nausea can be difficult on bad days but I manage that relatively well with the Domperidone.I eat my main meal in the evening just before bed so that I can sleep through any discomfort. I do suffer badly from fatigue. This was diagnosed as chronic fatigue syndrome/ME about a year after the gastroparesis was diagnosed. I don't know if the two are related.
Although I don't follow it the recommendation for gastroparesis if the symptoms are difficult to manage is six small meals a day or puréed food. At the moment I'm doing quite well with three meals a day but breakfast and lunch are quite small eg one slice of toast with a topping or a crumpet or something similar. I have a fairly normal sized dinner. I make sure it is low fibre and as much as possible low fat. Does this help? If I were you I would really get in touch with the diabetes specialist nurse and consultant's secretary telling them how much you are suffering. Have you spoken to your GP?

 

[Isma1123]

One of our other members has Gastroparesis too, I'm sure she'll be along soon and you can ask her any questions you may have. Welcome to the forum And.

Hi I’m new here and I’ve recently found out I have gastroparesis too. Type 1 diabetic for 20 years. My GP has referred me to a diabetic nurse care team. My doctor has also prescribed me some fluids also, not sure about them, but hope it helps. I’m currently struggling a-bit in bringing my hbc1 down, I’m eating small meals and drinking a lot of water as I’m feeling dehydrated through the day. My hbc1 does be in the normal range but can flactuate, any advice would be appreciated. My gastro isn’t severe, I only experience the trouble with digesting food, my food tends to sit in my stomach for about over 2 days. I’ve cut out carbs, can’t afford the risk. I’m thinking it may be the anxiety and overthinking also which might be spiking up my blood sugars. Any advice is appreciated. I want to keep my hbc1 in the normal range more than anything. It can go up to anything under 13.0. I need some help. Pls, I feel really low, alone and helpless.

 

[AJLang]

Hi @Isma1123
I'm really sorry that your GP thinks that you have gastroparesis. However my understanding is that gastroparesis should only be diagnosed after a specific test called the gastric emptying test which is a painless test done at the hospital. To help with gastroparesis you really need to see a either a diabetic consultant who specialises in gastroparesis or a gastroenterologist. Also, a hospital dietician helps. As far as I'm aware NICE also recommend an insulin pump for those with gastroparesis.
Everything else I know I about gastroparesis is written on my other posts earlier in this thread. Gastroparesis is a very tough journey, and for me is currently getting a lot tougher than it was but it is possible to manage it with the right tools. One of which is getting your blood sugars under control. For the last 11 years since I had the insulin pump my HBA1C has been in the 6s but I know that is difficult to achieve with gastroparesis as it does involve a LOT of testing, reviewing and micro dosing insulin. I can't provide any further advice about that because what works for me may not work for anyone else.
I understand that there is another long standing member on the forum who has been diagnosed relatively recently so they may be to help with current understanding on how it is managed.
You say that you aren't eating any carbohydrates but I'm not sure that is a good idea. Again a good reason to ask to speak to a hospital dietician about it.
Good luck on your gastroparesis journey.

 

[Anxious 63]

isma i would try eating small meals every 4 to 5 hours and make sure you have your blood sugars reasonably under i was told by a diabetic consultant that probably between 5 and 14 is ok , i know 14 sounds high but he told me we only get very concerned when they are above 20 consistently i think water is very good for blood sugar control and gastropareses , are you on creon by the way for help with your digestion

 

[AJLang]

isma i would try eating small meals every 4 to 5 hours and make sure you have your blood sugars reasonably under i was told by a diabetic consultant that probably between 5 and 14 is ok , i know 14 sounds high but he told me we only get very concerned when they are above 20 consistently i think water is very good for blood sugar control and gastropareses , are you on creon by the way for help with your digestion

I've done a lot of reading about gastroparesis including medical papers and nowhere can I find creon recommended for gastroparesis. I think there is confusion because creon is for certain digestion issues, particularly relating to the pancreas, but it's not for gastroparesis which is caused by nerve damage to the vague nerve. However if you have any links to something outside of this forum that suggests creon for gastroparesis please let me know.

 

[Anxious 63]

yes you are correct it is not used for gastropareses i apologise for that mistake , i am on them myself for chronic pancreatitis

 

[AJLang]

yes you are correct it is not used for gastropareses i apologise for that mistake , i am on them myself for chronic pancreatitis

No problem. I just wanted to check. Thank you for replying so quickly.

 

[Anxious 63]

metroclopimide is that a new for gastropareses ?

 

[AJLang]

metroclopimide is that a new for gastropareses ?

Metocloparamide was available for gastroparesis when I was first formally diagnosed with it so been a treatment for around at least 14 years. I did try it but I wasn't suited to it but it is the only authorised recommended treatment by the FDA in the US. If used long-term it can have parkinsons type side effects. The other recommended medications in the UK are domperidone and erythromycin - they used to be "routine" treatment but I again I understand limited use now due to side effects which can include heart problems that include suddenly stopping the heart. I believe there is a new medication either newly available or under trials but I'm not sure if it has yet been approved. If the gastroparesis is deemed to have got too bad pureed food and liquid diets can be recommended. There are also botox injections in the stomach which I think are only for certain people who have exhausted everything else and deemed suitable and a mechanical stimulation device which is difficult to get NHS funding for.
My former diabetic consultant (who has now left my hospital) wrote an article about managing diabetic gastroparesis in the BMJ (British Medical Journal) about three years ago - if I remember correctly she was not keen on the use of medication, certainly not for long-term use. If the medication doesn't work with six small meals a day then the next stage is pureed food or liquid food (I could never manage six small meals a day but it isn't important with gastroparesis not to suffer from malnutrition). The other advice I was given by another diabetic gastroparesis specialist (and in various papers I've read) is to keep blood sugar control as tight as possible whilst avoiding hypos as blood sugars (blood sugars not HBA1C) under 8 are better for gastroparesis. Having said that I've also been told that given the difficult of managing diabetes gastroparesis most people with it have HBA1C's that are 8.5 or above.

 

[Isma1123]

Hi @Isma1123
I'm really sorry that your GP thinks that you have gastroparesis. However my understanding is that gastroparesis should only be diagnosed after a specific test called the gastric emptying test which is a painless test done at the hospital. To help with gastroparesis you really need to see a either a diabetic consultant who specialises in gastroparesis or a gastroenterologist. Also, a hospital dietician helps. As far as I'm aware NICE also recommend an insulin pump for those with gastroparesis.
Everything else I know I about gastroparesis is written on my other posts earlier in this thread. Gastroparesis is a very tough journey, and for me is currently getting a lot tougher than it was but it is possible to manage it with the right tools. One of which is getting your blood sugars under control. For the last 11 years since I had the insulin pump my HBA1C has been in the 6s but I know that is difficult to achieve with gastroparesis as it does involve a LOT of testing, reviewing and micro dosing insulin. I can't provide any further advice about that because what works for me may not work for anyone else.
I understand that there is another long standing member on the forum who has been diagnosed relatively recently so they may be to help with current understanding on how it is managed.
You say that you aren't eating any carbohydrates but I'm not sure that is a good idea. Again a good reason to ask to speak to a hospital dietician about it.
Good luck on your gastroparesis journey.

Hi there, thanks for responding. My GP hasn’t mentioned anything about referring me to a diabetic consultant who specialises in gastro, but I did mention I’ve been referred to a diabetic care team in term of my eating and medication, like a Diabetic review. I am very certain it’s gastro as I have a delay of emptying upto 2 days. I suppose I can talk to my dr tomorrow about being referred to the right specialist. The out of hour service also did suggest that I book an appointment asap and get a review. I was also thinking about getting a pump inserted as I’ve heard good feedback about individuals being on them. Also my insulin dosages need to adjusted. For years the doctors haven’t kept tabs on the amount of insulin I’m on and I’ve been self adjusting for the past few months. Thank you

 

[Isma1123]

isma i would try eating small meals every 4 to 5 hours and make sure you have your blood sugars reasonably under i was told by a diabetic consultant that probably between 5 and 14 is ok , i know 14 sounds high but he told me we only get very concerned when they are above 20 consistently i think water is very good for blood sugar control and gastropareses , are you on creon by the way for help with your digestion

Thank u for replying. I am eating smaller meals, majority of my readings are like 5, 6,7 & 8 which is not too bad. I do tend to run on a high once a day as I had mentioned. Today I had abit of a spike which was under 11, yikes. But I’m thinking that might have been due to having a slight bigger meal, so next time I will make sure that I don’t repeat that mistake. I’ve never been told that it’s ok for bg levels to go upto 14, the target range is usually under 9 after meal and post meal it should be no more than 7. If so, then I might be ok then, but I’m gonna run that past my gp, they probably will say something different. I do drink a lot of water and I’ve decided to always go for a walk, if they spike up. I’m actually on a walk now. I’m hoping it helps. I was prescribed Lansoprazole but it didn’t help. My dr has prescribed me some fluids, but I need a thorough investigation done to get the right treatment. Everytime I go wrong on something, I remember to not repeat the same mistake again. I just want to keep my levels stable, I’m doing quite good, but it’s not enough. Thank you

 

[rebrascora]

Going up to 11 of even 14 occasionally is not something you should be worrying about. The guidance for time in range for Libre is that you are doing great if you can manage 70% of the time between 3.9 and 10, and no more than 4% below 3.9, so it is perfectly acceptable and expected to a certain extent that you go above 10 up to 30% of the time.

You seem to be going on figures for Type 2 diabetes, treated by diet and or oral meds. It is very different when you are managing your diabetes with insulin and it sounds to me like you are imposing stricter guidelines than you need to. Yes, it is nice to get a better TIR than 70% but you should certainly not worry about it if you spike above 10 or even up into the teens occasionally.

 

[Isma1123]

Going up to 11 of even 14 occasionally is not something you should be worrying about. The guidance for time in range for Libre is that you are doing great if you can manage 70% of the time between 3.9 and 10, and no more than 4% below 3.9, so it is perfectly acceptable and expected to a certain extent that you go above 10 up to 30% of the time.

You seem to be going on figures for Type 2 diabetes, treated by diet and or oral meds. It is very different when you are managing your diabetes with insulin and it sounds to me like you are imposing stricter guidelines than you need to. Yes, it is nice to get a better TIR than 70% but you should certainly not worry about it if you spike above 10 or even up into the teens occasionally.

Hey there, thanks for responding , the clinician did say the same to me today also , if my sugars are abit high after food it’s ok. But something strange happened today, I had something to eat before I left the house, my sugars were pretty decent, around 5, when I got back a couple of hours after, i was preparing my meal, I checked my glucose level and it was 13.4, isn’t that supposed to be too high for a meal, bear in mind, I had been walking for a while, so I expected the levels to come down more when I reached home, maybe cos I didn’t carry any water with me & supposedly could have been a case of being dehydrated, I was feeling parched actually, tongue was white. Do you know why this happened ? Pls, it’s stressing me out. Any advice would be appreciated. Thank you















S

 

[Isma1123]

Going up to 11 of even 14 occasionally is not something you should be worrying about. The guidance for time in range for Libre is that you are doing great if you can manage 70% of the time between 3.9 and 10, and no more than 4% below 3.9, so it is perfectly acceptable and expected to a certain extent that you go above 10 up to 30% of the time.

You seem to be going on figures for Type 2 diabetes, treated by diet and or oral meds. It is very different when you are managing your diabetes with insulin and it sounds to me like you are imposing stricter guidelines than you need to. Yes, it is nice to get a better TIR than 70% but you should certainly not worry about it if you spike above 10 or even up into the teens occasionally.

Hey there, thanks for responding. Yeah my clinician did say that it’s normal to be abit high after a meal. But something peculiar happened to me today, I had a reading of 5 before I left the house and when I come home, before my meal I had checked and my reading was over 13. Isn’t that abnormal before a meal, I had been walking the whole time I was out, maybe cos I didn’t drink any water in all that time, I was actually quite parched when I had come home. My tongue was also quite white, supposedly that could have caused the spike. I’m just feeling abit stressed and like crap after that reading, any advice would be appreciated. Thank you