Hi I’ve been Type 1 Diabetic for 14 years, currently being controlled by a CGM (Dexcom G6) and an Insulin Pump (Omnipod 5)! I have joined the Forum for a bit of support in regards to decisions around my diabetes and complications and I am looking forward to supporting anyone if I can too!! ☺️
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Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
New here!
- Thread starter abbi913
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Proud to be erratic
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Good morning, @abbi913. Welcome to the Forum. You've been managing this Diabetes malarkey some 10 years more than myself and I don't yet have a pump; so I'm probably not the right person to help you about decisions around your Diabetes. But there are many others on this forum who can potentially help drawing from their experience. I'm sure they will be along a bit later this morning.
Inka
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Welcome to the forum @abbi913
Great to have you here!
We’ve a fair few members on hybrid closed loops, and various other types of pumps (with and without connected sensors). Plus a raft of folks on other regimes, and with lots of different types of diabetes.
Do fire away with any questions you may have, or simply use the forum as a friendly space to express your frustrations or worries among folks who ‘get it’.
Great to have you here!
We’ve a fair few members on hybrid closed loops, and various other types of pumps (with and without connected sensors). Plus a raft of folks on other regimes, and with lots of different types of diabetes.
Do fire away with any questions you may have, or simply use the forum as a friendly space to express your frustrations or worries among folks who ‘get it’.
lauramwatt
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Welcome @abbi913 !
The forum is fantastic for support and a great place to learn new things 🙂 I've been diabetic for 25 years and am still learning things regularly from reading people's posts 🙂
Hi thank you so much for replying to me! It’s lovely to meet you, I’ve been in an insulin pump for 13 years, I really love using my pump/CGM, it has really made social situations easier for me in comparison to having to inject and work out my carbs. I have really bad anxiety so I would always worry about injecting in public and not having a private clean area to inject.
I’m currently looking for advice in how I’m being treated and my rights with my treatment in hospital as I really feel I’m being heavily ignored by all healthcare professionals in A&E and I’m really worried about my organs and further health damage. Sorry for the long reply, hope it reaches you well ☺️
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Hi @abbi913, a warm welcome here from me too.
Sorry to hear you are having a difficult time in hospital - could you share a little more information? Are you currently an inpatient? Or are you having difficulties with your diabetes clinic as an outpatient?
England based patients can speak to PALS: https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/
mashedupmatt
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Hello!! Thank you so much for replying, I feel I do need a bit of support so I really appreciate you all here☺️
At the moment I’m back in A&E (after being discharged at 1:00am) I’ve been suffering with vomiting since April, I’ve been in and out of A&E every 3-4 weeks, I wake up with really bad cold sweats, really dizzy, and then I start vomiting, from there I can’t keep anything down at all. With my vomiting and my body being completely empty of any fuel, my ketones have began to raise, I came into hospital and my ketones were 0.8 and BG on 5.4, my blood levels haven’t been high, they’ve been in low range the whole time.
I’ve expressed my concerns to my Diabetic Consultant who advised me to ring them whenever I come into A&E due to the poor treatment I’ve had since April, as A&E constantly leave me in the waiting rooms for 6+ hours with no fluids or anti sickness. When I asked the Triage nurse how long would it be before I have fluids to help the ketones as I haven’t been able to eat or drink for over 48 hours, the triage nurse simply told me “you don’t actually needs fluids, your blood sugar isn’t high and your ketones are still the same as when you were in yesterday”, I’m wondering if this is entirely accurate, I know my body and have been DKA a few times before, I know when I’m like this, I need constant fast fluids and anti sickness regularly topped up, when I have this care provided, I do get better and I can go home and begin to live normally again. However, I feel A&E haven't been doing my care plan for sick days to a great standard, in fact I feel like they’ve put my care plan in the bin and are ignoring everything I am telling them about my condition. When I first came in they give me a bag of fluids over 2 hours, when that run out, they left me for 2 hours, then give me another bag of fluids over 8 hours. I’m struggling to see why they put it on fast, left me and then put it back on for even longer, considering I was pale, restless, vomiting bile, I feel I need the fluids in my body urgently. My mouth is so bone dry, it’s sticking together. I really feel dehydrated throughout my whole body, I can’t describe it but I just feel so run down like I have the flu and thirsty
I have told the A&E staff that if I’m left without constant fluids and regular anti sickness I know that I will go back to square one. Not to blow my own trumpet, but this is what has happened every time I’ve been here, it’s a repeated pattern with the staff here, they never listen. I suffer really bad with my mental health, and the doctors are unsure why i keep vomiting in this pattern, it has been suggested it could be Gastroparesis caused by my diabetes as I have been diabetic for over 10 years, however no follow up appointment or scan to confirm, I had a CT scan yesterday on my tummy and everything was normal.
I’ve been really unwell the last 48 hours, unsure if I’m really emotional and unsure if I’m not being able to think straight. I’m wondering if what I’ve told you what I’ve experienced you’d say to trust the healthcare professionals, I know my body the best and they are really uniformed on diabetes in here, one nurse here actually said to me “you don’t need fluids at all for ketones I worked on a diabetic ward for 5 years I think I know what helps”, I feel like I’m stuck between a rock and a hard place, I really don’t know what to do, every time I come here I feel like I’m not going to leave alive because they treat me so poorly, a Senior Doctor said to me yesterday “go private if you can at least you can see the same doctor” , I feel completely run down by the system, if I could afford to pay privately to have this investigated I would’ve done so ages ago as I also care for my Gran and the vomiting episodes are impacting how much I’m able to do for my Gran.
Really sorry the big huge reply, I hope it reaches you well, I’m sorry if some parts of my message come across blunt or abrupt, I’m just really struggling and feel like I’ve been thrown to the wolves.
I have a good sense of humour, so I’m all ears for jokes and tongue in cheek, really hope this reaches you well, apologies again☺️
Thank you for your kind words☺️
Thank you so much for the warm welcome. I’m looking forward to having opinions and discussions with everyone who has Diabetes (regardless of the exact diagnosis, I’m happy to talk with everyone☺️). I’ve never joined the forum before as I was always so scared and nervous, but I realise now that we can all support each other as you said as “folks who get it”.
Inka
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That sounds awful @abbi913 ! It must be exhausting for you. Is there any pattern at all to the vomiting? Any foods? Any timings?
As for your treatment in A&E, could you get your consultant to type up a very short care plan, like a flow chart, and get a copy of it that you can show when you go in? If your poor treatment continues, do complain to PALS. It’s what they’re there for.
As for your treatment in A&E, could you get your consultant to type up a very short care plan, like a flow chart, and get a copy of it that you can show when you go in? If your poor treatment continues, do complain to PALS. It’s what they’re there for.
silver minion
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Regardless of your diabetes, if you haven't been able to keep fluids down for 48 hours or more, you should be given fluids to avoid dehydration. In your position I would definitely put in a formal complaint.
Hi thank you for the warm welcome☺️, I have shared some details below about my situation, I’m unsure if your able to see my reply, let me know and I can send it over to you too☺️ I’m currently inpatient at A&E, Im having difficult time with trusting health care professionals who are in charge of my care.
I live in South Wales, I’m unsure if we have a PALS service here.
Looking forward to hearing from you☺️
Honestly I can’t find a pattern with it, I’ll have cold sweats every night, I thought I might have cyclical vomiting syndrome due to my stress levels being extremely high at the moment learning about my grans terminal lung cancer, but this time I’ve been admitted I wasn’t feeling stressed or anxious at all, I felt content, I woke up with cold sweats and next thing the vomiting started.
I can’t find any patterns with foods, like if a certain meal sets me off, it happens at any time with anything.
I have asked my consultant for a care plan, and he told me to ring when I was in next, we’ve been trying to contact him, his secretary and the diabetic nurses, and all of them have done nothing, they haven’t even got back to me.
I honestly don’t know what to do anymore, I feel like I’ll die with my diabetes and not because I haven’t properly looked after myself, but because the healthcare professionals are constantly leaving me get to a death bed state before they do anything at all. The only reason I’m in a sub waiting room right now is because I had a hypo of 2.9 and I can’t keep anything down to fix it, otherwise I’d still be outside.
Is there a PALS service in South Wales do you know?
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I've read your updates and it sounds like you're having a really tough time.
There's a PALS service in Wales too and you can look up the details on the hospital's website because there's usually an office based on site. There might even be posters or leaflets around A&E or another ward that you're on. Even if you don't go the whole way in making a formal complaint, PALS can listen to what you're going through and offer advice and support on your next steps/options.
Leadinglights
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Are they monitoring your glucose levels as there surely is something they can give you intravenously to treat the hypo just as they would for somebody who was unconscious.
What do you normally take to treat a hypo, there are things which would be absorbed by the mouth without the need to swallow though better if you could.
Alan44
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Hi @abbi913 and a warm welcome to the forum from me.
I can't really add anything to what's already been said, but would agree that a chat with PALS is a good way forward.
My Grandparents lived in Barry, so as a child all my summer holidays were spent in Wales and I have some lovely memories as a child on Barry beach and going to the funfair. (it also rained a lot
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Alan 😉
I can't really add anything to what's already been said, but would agree that a chat with PALS is a good way forward.
My Grandparents lived in Barry, so as a child all my summer holidays were spent in Wales and I have some lovely memories as a child on Barry beach and going to the funfair. (it also rained a lot
)Alan 😉
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@abbi913, you might also find this webpage helpful if you're thinking of raising a formal complaint: https://www.gov.wales/nhs-wales-complaints-and-concerns-putting-things-right
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Goodness @abbi913 what a horrid thing to be going through. Must be pretty scary
I wondered about gastroparesis when I stsrted reading your description, but the more you explained, the less right the fit of that felt (to my completely unqualified non-medical mind).
Gastroparesis is delayed stomach emptying, where the stomach gets too full and vomits as it isn’t emptying normally. I’m not sure it continues until you are completely ‘empty’ and bringing up bile. Do you know @AJLang ?
The only times I’ve ever got to bile and keeping nothing down were stomach bugs / infections. Are things easing off since April? Are you getting gaps between these events?
I wondered about gastroparesis when I stsrted reading your description, but the more you explained, the less right the fit of that felt (to my completely unqualified non-medical mind).
Gastroparesis is delayed stomach emptying, where the stomach gets too full and vomits as it isn’t emptying normally. I’m not sure it continues until you are completely ‘empty’ and bringing up bile. Do you know @AJLang ?
The only times I’ve ever got to bile and keeping nothing down were stomach bugs / infections. Are things easing off since April? Are you getting gaps between these events?