Diabetic Gastroparesis

[silver77mjd]

Good Morning Helpful People

Not sure if anyone has any experience/knowledge of the above condition, as I was recently sent for an endoscopy by my GP and the results seem to indicate I may have it. I’m being referred to a Gastroenterologist for further explanation in January but was wondering how it affects my MDI dosages?

I know that everyone is different but was wondering if anyone had any advice/actual experience in living with this?

Thanks
Mark

 

[Stitch147]

Morning Mark, I personally don't have any experience but there are some on here that do. Hope you manage to get some help and advice soon.

 

[Ljc]

Hi Silver 77. Sorry I can’t help. Some people here do have Gastroparesis , hopefully they will be along soon.

 

[Ljc]

You beat me to it @Stitch147 🙂 I must learn to type faster

 

[everydayupsanddowns]

Welcome to the forum @silver77mjd

I’ll tag @AJLang into this thread, as they have years of experience in juggling gastroparesis and T1D.

Hope you can find some strategies and options that suit you. There is a section in the latest NICE guidance for T1 about gastroparesis, but if memory serves, there were no easy fixes and it can be quite complicated to manage, depending on severity of symptoms.

 

[silver77mjd]

Thanks for replies everyone.

 

[AJLang]

Hi Mark sorry for the short reply but I'm feeling wretched with a cold at the moment. However I will try to help you as much as I can as I have had diabetic gastroparesis for nearly eight years. Why does your your GP think that you have gastroparesis i.e. What symptoms do you have?. An endoscopy rules out some conditions but does not confirm gastroparesis. There is a specialist gastric emptying study test for that - completely boring to do but totally painless. What diabetic expert help are you getting with your diabetes? I hope that the diabetes team at your hospital are involved, if not they should be. I noticed on the 7 day waking average that you commented onleveks between 4.9 and 31 - do you carb count accurately and do dose adjustment. Have you been on. DafNE course? What are your BG levels like one and two hours after eating in comparison to pre meal levels? Sorry for all of the questions but gastroparesis is complicated and needs to be taken one stage at a time, based on my experience. The biggest danger is having a hypo after your bolus/eating and the hypo treatment not being able to work because of your stomach being too full. Plus the higher your BG levels the worse the gastroparesis. It's a tricky balance but I have a reasonable life although I am on strong medications which can have potentially lethal side effects. But having worked hard to maintain decent HBA1C's has helped considerably (HBA1 recently has been 6.7 and 6.9). My insulin pump also made the world of difference to my control but includes ten finger prick blood tests, very careful management of what I eat when, accurate carb counting and lots of micro blousing and different rates of insulin. But I have done it. But first back to basics. If you can answer my earlier questions that would be really great - and it is possible to get semi reasonable control on MDI.

 

[silver77mjd]

Hi AJLang, thanks for your response sorry to hear you’re not well hope it doesn’t last.

The GP had originally wanted to check some issues I’d had with swallowing but also abdominal pains and some other digestion problems twinned with pretty erratic blood sugars. However when the paperwork came back from the scan they had written suspected gastroparesis and that despite being nil by mouth for almost 15 hours prior to the procedure that my stomach was full of food. But I guess this may need further checks and will be clarified when I speak to the specialist. From what I’ve read I only seem to have a couple of the symptoms but again I guess this may vary from person to person.

Since moving to Cornwall my diabetes care is handled by my diabetes nurse at the local surgery with a once a year appointment at the hospital. I have to say the attitude is a lot more laid back down here which is probably not great for me.

I try and carb count and get my best control when I do but I break good habits regularly and have struggled in the past keeping my control as it should be which would explain the variation in my sugar levels this week. And testing regularly has been absolutely key otherwise I rollercoaster all over the place.

I have recently been sticking to a fairly regimented food plan and but noticed that I’m hypo’ing more regularly after meals which is one of my concerns while managing with injections, but it may be that I will need to split my mealtime dosages. But I plan to discuss this with my diabetic nurse once I know for sure.

Thanks again for responding.
Mark

 

[trophywench]

I VERY strongly suspect a nurse at a GP surgery won't have a clue. It's hardly a common condition in the first place and successful treatment diabetes-wise is certainly not simple either.

Which hospital have you been referred to? - cos some of us on here have a T1 friend in Penzance and therefore know that these days they have a rather decent Diabetes clinic at Truro hospital that her GP surgery referred her to - and she was able to get a pump. I tell you this because Amanda (AJ Lang) struggled for quite some years juggling with split doses (and it is the first thing to try anyway so you're correct there, juggling the proportions is what's crucial) and I just kept droning on every time she had glitches 'You could really do with a pump, mate!' and she's done a fair bit better since they eventually agreed with me LOL We all used to struggle not all those many years ago, may as well have demanded the flippin Kohinoor! Fortunately - time has moved on now.

 

[AJLang]

Thank you Jenny. I've been delaying my response because I don't want to scare how serious gastroparesis is with regard to diabetes but there is no doubt that it is. Jenny is quite right that she lovingly nagged about the pump but she was so right, the effects of gastroparesis on my BG levels was killing me and even then it took me a long time to get the pump. You need expert help. My GP surgery knew nothing about diabetic gastroparesis and, although my diabetic clinic realised what it was they had to refer me to a regional hospital for help and even their advice is limited. With gastroparesis you have to fight to get the help that you need more than you ever had to fight. My pump rep said that diabetics with gastroparesis usually give up. BUT and it's a big BUT you mustn't give up. For me the scariest in MDI was levels in the 30's and two hour post meal hypos which wouldn't respond to treatment. But I got through it with pig headed determination and fighting every step of the way. But it's worth it, hence why I'm sitting in a pub with a nice glass of wine having watched Paddington 2. I cannot give medical advice but domperidone, although it has potential risks, in my opinion is less risky than the mega diabetes highs and lows that come with gastroparesis. You need to fight for a diabetic gastroparesis expert even if you have to travel to see them. The recommended gastroparesis diet is low fat, low fibre - counterintuitive to a diabetes diet but very important to reducing food staying in your stomach. The other recommendation is six small snacks a day rather than main meals - in my opinion a nightmare because I like to eat with my partner evening so I eat very little during the day and then with my partner in the evening, but even then only possible with domperidone and erythromycin medications. With regard to MDI split boluses for anything you eat then test, review and learn how your body reacts. I had to increase my night time basal to help with food digesting during the night and also correct at 3am. You need your blood sugars under control without the hypos.

 

[silver77mjd]

Thank you Jenny/Amanda for your messages and information. I have been referred to a specialist at Truro so will see what comes from that.

I have only ever had tentative discussions with my DSN about the possibility of a pump but have never pushed for one as she has said they would like to see some tighter control first. I will post again once I have had my appointment as I’m sure I’ll have plenty more questions.

Thanks again

 

[KW101]

Has anybody on here with gastroparesis had the botox injection in the stomach. How well has it worked? I've been offered it but unsure about it. Thanks

 

[mikeyB]

I find this thread quite informative. The reason is that since developing Parkinson’s disease, just as every movement is slowed down, so is gastric emptying. This is not a problem for most of the day, but when general symptoms are much worse in the evenings, I’m having problems timing my humalog, on occasions not injecting till around 90 minutes after eating. If I injected at the usual time, I would be eating jelly babies after eating and causing BG chaos. And it’s not consistent, with good days and bad days. It helps having the Libre, because I can add up the carbs, and wait until the Libre starts to show a rise. It’s not ideal, because of the delay, but it’s the only way I can do it.

I can’t imagine what it’s like having that on a permanent basis, you have my undying admiration, Amanda.

 

[AJLang]

Thank you Mike but I'm so sorry that you're also having gastric emptying problems. Well done with working out the bolus works best for you. I've been "lucky" in that with the medication and pump that it is manageable BUT there is always the risk that they will stop the domperidone because of potential side effects and that the erythromycin will lose effectiveness. If that happened my quality of life....well I don't even want to think about it. I manage my diet with a small snack in the morning i.e. 10 carbs and similar at lunchtime and then I can manage to have dinner but the evening meal requires 1 unit of humalog upfront, the rest as a five hour extended bolus and then relately high basal rates from midnight to 7am - and even then it can be erratic. But I'm ok as long as diabetic "specialists" don't try to interfere because they don't understand how I manage it at all.

 

[AJLang]

Has anybody on here with gastroparesis had the botox injection in the stomach. How well has it worked? I've been offered it but unsure about it. Thanks

Sorry Karen I haven't had the Botox injection, I've heard conflicting reports about its effectiveness but I'm not aware of any problems it could cause - but my understanding of it is limited.

 

[LorraineP]

Hello Silver77mjd, as you know we all have different experiences and severity of symptoms with our gastroparesis. This time last year I had no quality of lfe with frequent vomiting, nausea and relentless hypos. A gastric emptying study confirmed I had gastroparesis (38% food left in the stomach after 4 hours). My gastro consultant and diabetic consultant each told me they couldnt help me. They both told me that they wouldn't prescribe Domperidone as it is no longer approved in my area so I was very close to giving up.

However all it took was one appointment with a great diabetic dietician to turn things round for me. She understood and explained gastroparesis better than either consultant and she was incredibly informative. She took time to analyse my diet in detail (which I had thought was quite healthy) but I had forgotten that my favourite healthy foods like salmon, mackerel, avocado etc are high in fat too. She recommended a low residue, low (ish) fat diet (max 45g per day). So with the help of the Carbs and Cals app I can limit fat and fibre intake each day as well as carbs of course. It's hard work but worth it because I haven't been sick since I changed my diet. I didn't drink much but I also stopped drinking wine as alcohol also slows digestion. I make sure that I chew my food thoroughly too.

So I haven't vomited since 28th August this year (I'm counting every day!!) and my erratic BG has settled into a pattern of sorts. There's been another unexpected benefit. It took a few weeks but now after eating, my BG starts to rise very quickly sometimes as quickly as 30 minutes after food. So instead of hypoing after eating Im now spiking and then going low before my next meal. This week I've even taken my bolus 20 minutes before eating to try to avoid the spike. GP is unpredictable and I'm aware that the reprieve in my symptoms could be temporary but its good to feel relatively normal inbetween. I'm surprised that my symptoms improved so soon but I've been keeping very tight control of my BG admittedly made easier by having a pump and the Freestyle Libre.

In my experience at least, a restricted diet is a small price to pay for feeling healthy again. So obviously I would say that an appointment with your dietician is just as important as an appointment with a consultant or DSN. I'm aware however that a change in diet alone won't work for everyone but its worth trying especially if medication is refused.

 

[AJLang]

Thank you for sharing that Lorraine. Interesting about the alcohol because I did dry January three years ago and it had absolutely no effect on my gastroparesis. How do you manage your calorie intake? It's a personal thing for me but I would absolutely hate not being able to have the same evening meal as my partner (albeit a small portion).

 

[LorraineP]

Thank you for sharing that Lorraine. Interesting about the alcohol because I did dry January three years ago and it had absolutely no effect on my gastroparesis. How do you manage your calorie intake? It's a personal thing for me but I would absolutely hate not being able to have the same evening meal as my partner (albeit a small portion).

Morning! I've often told myself that it's much easier for me to restrict my diet as I live alone. If my partner was still alive I couldn't expect him to eat like me and it would be just too tempting to cook food I couldn't eat. However anytime I become tempted I just remember how I felt when I went through 18 months of regular vomiting and I couldn't get help (until the day I asked to see a dietician!). That memory is a very powerful incentive. So I now find it quite easy and I'm liking the fact that I have quite a flat stomach after years of bloating 🙂.

I'm so strict that I even bring my own weighed and measured food to friends houses. One friend even went to the trouble of cutting the stalk and centre vein out of individual spinach leaves to reduce the fibre content. I could have cried as it took her ages to do it! I find that if I eat any single meal with a fat content above 20 g then I'm sick. I couldn't possibly expect other people to know what to include and exclude. If eating out I stick to restaurants that are receptive to requests for meal modifications. I phone the day before to give them plenty of warning. If I find myself in a situation where food is offered and it isn't suitable I politely refuse and explain why. I can eat what I want when I get home. So I haven't been sick since I started this practice and although it's too early to say I'm out of the woods, even a break is good enough for me.. Oh, and I haven't lost any friends yet!

Another benefit of the diet is that I no longer get morning syndrome and I've had to reduce my morning basal settings. Last night I had one custard cream at midnight as I was a tad low before bed(6.6) and I woke at 10.1 so now I know to stick to my 7.30pm food curfew. I'm still learning but I'm loving the changes. I don't want to raise anyone else's hopes that my regime could work for them but if all else fails it has to be worth a try.