i wish i had listened.

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diamond

Member
Relationship to Diabetes
Type 1
hi everyone,

i guess i should say a little about myself. i am forty one and i have had type 1 diabetes for thirty two years now. when i was first diagnosed very little was known about the illness. i was ten years old and i felt like a freak. i hid my diabetes from all my friends and growing up through my teenage years i didnt really look after myself. to be honest throughout my life i have neglected my diabetes from time to time but now i am paying for it. severely paying for it.

about six years ago i started having problems with my bowel. for some reason it just seemed to stop working. nobody could pin point why but it got so bad for me that two years ago an ileostomy (stoma) was performed.

about this time i developed neuropathy in my hands and feet. it drives me crazy and i am on gabapentin, tramadol and lidocaine patches.

i also got told at the beginning of last year that i have retinopathy. it was at that same time for no apparent reason my sugars went really high and i spent most of my time in DKA. i was in and out of the coronary and even ended up in the intensive care unit. on my last trip to the coronary in october last year i came out but my appetite was so bad i only ate one meal a day. it seemed to lower my sugars though and for the first time in years i had perfect control.

however a few months ago i noticed things were not quite right with me. i was not able to pass urine as easy as i used to. my blood pressure was running really low (61/45), dizzy, nausea, sickness, lack of appetite, difficulty breathing, difficulty talking, stoma hardly worked, pressure behind my eyes, skin sensitivity, choking feeling, unable to control body temp and lots and lots of pain. i ended up in hospital where the word 'gastroparesis' was thrown at me and i was told i have neuropathy damage to my vagus nerve.

so this is where i am at now, i've not eaten for six weeks, im unable to tolerate build up drinks and live off of lucozade when i go low. i take donperidone (anti sickness) everyday or else i throw up. im waiting for an endoscopy and a nerve test of some kind. i collapsed on monday, im weak and to be honest i cant even begin to explain how ill i actually feel. some days i cant even get out of bed.

i have looked up the vagus nerve and gastroparesis and it all fits in with my symptoms. i understand it is not reversible and cant be repaired. the damage is done. i know what i have to go through now but i dont feel sorry for myself. i feel angry with myself. if only i had looked after myself a lot more. i never took diabetes seriously enough and now im paying the price. i cant turn back the clocks but i enjoy what i can when i can. i have a 14 year old son who has been diabetic since 8, i hope he can learn from me and not make the same mistakes i made.

i hope i have not bored anyone, i just wanted to tell my story and maybe get a little support or advice.

best wishes to all, diamond 🙂
 
wow thats quite a story thank you for sharing it and i wish you all the best ...this is a support forum so please carry on posting to us x🙂
 
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Hi diamond, welcome to the forum I'm very sorry to hear about all you have gone through. We do have members here with gastroparesis so hopefully you will be able to share experiences and learn from each other.

Please do feel free to join in wherever you wish, everyone is really friendly and supportive and you can feel safe in letting out your feelings if it helps.

I hope to hear more from you, and thank you for telling us your story, it is important for people to hear of experiences such as yours.
 
Well done for telling your storey Dimond ! Dont be to hard on yourself. When i was younger i didnt tell anybody i was "D" & have been 46yrs & know how you feel. Even now i hate the thought of someone looking down on me & dont let them beat me. Good luck with your son !
 
Hi Diamond and a warm welcome to the forum
 
Hi diamond. Welcome 🙂

I hope you can find some way of getting things working again so that you have some quality of life. I'm sure, once you get the gastroparesis settled, you will find your BGs stabilise and you can eat fairly normally again.🙂

Rob
 
Hi Diamond - thank-you for sharing your experience, I'm just sorry you've had such a tough time. I wouldn't be hard on yourself - like you say when you were diagnosed not much was known about it, & there was chuff all support- so if your grasp of control wasn't ace it's hardly surprising...& not all down to you. I'm glad you've found this forum, the people here are wonderful & have helped me retain the remains of my optimism over the past few years! 😉

I hope things settle down for you very soon, & whatever happens this is a good place to come & share, let off steam if need be etc.
 
Thank you for your story

I think you were very brave to write this. I really hope that things improve for you. I have a son with type 1 and like all the parents here, I struggle every day to try to keep his blood sugar under control. I hope it doesn't offend you if I say that your story reminds me what I am fighting for and gives me the strength and determination to carry on with this marathon.

I wish you all the luck in the world and hope that you regain your strength.
 
diamond said:
hi everyone,

i guess i should say a little about myself. i am forty one and i have had type 1 diabetes for thirty two years now. when i was first diagnosed very little was known about the illness. i was ten years old and i felt like a freak. i hid my diabetes from all my friends and growing up through my teenage years i didnt really look after myself. to be honest throughout my life i have neglected my diabetes from time to time but now i am paying for it. severely paying for it.

about six years ago i started having problems with my bowel. for some reason it just seemed to stop working. nobody could pin point why but it got so bad for me that two years ago an ileostomy (stoma) was performed.

about this time i developed neuropathy in my hands and feet. it drives me crazy and i am on gabapentin, tramadol and lidocaine patches.

i also got told at the beginning of last year that i have retinopathy. it was at that same time for no apparent reason my sugars went really high and i spent most of my time in DKA. i was in and out of the coronary and even ended up in the intensive care unit. on my last trip to the coronary in october last year i came out but my appetite was so bad i only ate one meal a day. it seemed to lower my sugars though and for the first time in years i had perfect control.

however a few months ago i noticed things were not quite right with me. i was not able to pass urine as easy as i used to. my blood pressure was running really low (61/45), dizzy, nausea, sickness, lack of appetite, difficulty breathing, difficulty talking, stoma hardly worked, pressure behind my eyes, skin sensitivity, choking feeling, unable to control body temp and lots and lots of pain. i ended up in hospital where the word 'gastroparesis' was thrown at me and i was told i have neuropathy damage to my vagus nerve.

so this is where i am at now, i've not eaten for six weeks, im unable to tolerate build up drinks and live off of lucozade when i go low. i take donperidone (anti sickness) everyday or else i throw up. im waiting for an endoscopy and a nerve test of some kind. i collapsed on monday, im weak and to be honest i cant even begin to explain how ill i actually feel. some days i cant even get out of bed.

i have looked up the vagus nerve and gastroparesis and it all fits in with my symptoms. i understand it is not reversible and cant be repaired. the damage is done. i know what i have to go through now but i dont feel sorry for myself. i feel angry with myself. if only i had looked after myself a lot more. i never took diabetes seriously enough and now im paying the price. i cant turn back the clocks but i enjoy what i can when i can. i have a 14 year old son who has been diabetic since 8, i hope he can learn from me and not make the same mistakes i made.

i hope i have not bored anyone, i just wanted to tell my story and maybe get a little support or advice.

best wishes to all, diamond 🙂
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Dear diamond

What a story. I am so sorry to read what you have been going through. I know you can't turn back the clock, but you have opened up with such honesty and heartache. I wish you well and this is a good place to come to for support and advice. You are not alone. Best wishes to you diamond

Sheena
 
thank you all so much for saying hello. ive never had any support for my diabetes and to be received here with such warmth is truly wonderful. reading your posts i dont feel so alone. so thank you again.
i know some of you have said not to beat myself up too much about past neglect but truth is for now i do. i must look forward, not back hey :D

i think i may try to get my son to join this forum, he has been diabetic for nearly six years now. he is a high functioning autistic so he has lots to deal with. he is only fourteen. hmmmm not sure if you have to be a certain age to join the forum though????

diamond
 
Please do not blame yourself for these complications. When you were diagnosed we didn't have the tools that we have now to look after diabetes. It's not your fault that you have diabetes and not your fault that you have complications. Given your difficulty with keeping food down I am extremely surprised that you are only being prescribed domperidone for the gastroparesis. This can be combined with erythromycin or metroclopramide (check spelling) or, potentially both if your stomach is not emptying well enough. I know this because I have been through all of the combinations and they are worth trying. A) ask if you can be prescribed one of these extra medications b) ask for a gastric emptying test c) ask for a consultant who specialises in diabetic gastroparesis
 
ageez said:
I think you were very brave to write this. I really hope that things improve for you. I have a son with type 1 and like all the parents here, I struggle every day to try to keep his blood sugar under control. I hope it doesn't offend you if I say that your story reminds me what I am fighting for and gives me the strength and determination to carry on with this marathon.

I wish you all the luck in the world and hope that you regain your strength.
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thank you ageez for your message and im not offended at all 🙂 my son also has diabetes so i totally understand when you say its a marathon. i feel like a real nag when i constantly have to be on his back but i then look at myself and see why i nag. then i also can see just how much my parents struggled with me when i was a child lol. i have experience of both sides of the coin lol.

take care and keep up with the marathon, he will thank you in the end.

diamond
 
AJLang said:
Please do not blame yourself for these complications. When you were diagnosed we didn't have the tools that we have now to look after diabetes. It's not your fault that you have diabetes and not your fault that you have complications. Given your difficulty with keeping food down I am extremely surprised that you are only being prescribed domperidone for the gastroparesis. This can be combined with erythromycin or metroclopramide (check spelling) or, potentially both if your stomach is not emptying well enough. I know this because I have been through all of the combinations and they are worth trying. A) ask if you can be prescribed one of these extra medications b) ask for a gastric emptying test c) ask for a consultant who specialises in diabetic gastroparesis
Click to expand...

hi AJLang thank you for your post. im sorry to hear that you have gastroparesis also. its a nightmare not being able to eat as i used to like my food. yes i have heard of the meds that you mentioned but unfortunately i am allergic to them. just like so many other meds. im having an endoscopy in april and seeing my diabetic consultant next week who is going to sort out the gastric emptying test. so hopefully things are moving in the right direction.

can i ask you a question.. how are you coping with gastroparesis, are you having the same other problems i mentioned. sorry if im being nosy, im just interested as to how you cope as i feel so ill all the time. i do try to go out and be there for my son but its a struggle. especially as im in pain all the time too.

keep well, diamond
 
hi Diamond

of course you Are not being nosy. my main gastroparesis problems are vomiting (but that stopped with the erythromycin and domperidone), nausea, bloated stomach and very erratic blood sugars, particularly at night. The gastric emptying study indicated that it is severe gastroparesis but fortunately I don't have any pain and have continued working. Amanda x
 
Welcome to the forum Diamond. There is another forum that you may be interested in

http://www.childrenwithdiabetesuk.org/

you may find some other parents in your area and some other teenagers who your son could exchange stories with.

Back to you - don't beat yourself up - what is done is done and you can't do anything about it now - you can only do the best with what you have and it sounds like that is what your are trying to do.
 
Hi Diamond, thank you for sharing your story with us. I'm sorry about what you have gone through but I hope the meeting with your diabetic consultant can help with your gastroparesis.

And welcome to the forum 🙂
 
AJLang said:
hi Diamond

of course you Are not being nosy. my main gastroparesis problems are vomiting (but that stopped with the erythromycin and domperidone), nausea, bloated stomach and very erratic blood sugars, particularly at night. The gastric emptying study indicated that it is severe gastroparesis but fortunately I don't have any pain and have continued working. Amanda x
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thank you for replying to my questions. i am on the domperidone and it does give me a little relief but i do get considerable pain with the gastroparesis. im so sorry to hear that you have gastroparesis quite severe. do you have any other problems. i think i have had damage to my vagus nerve for quite a number of years now as my bowel stopped working for no reason a while back. i also have duprytrons constacture in both hands and ive been told that is a problem a lot of diabetics have. i broke my back four years ago and through all the xrays i was told i have arthritis and osteoporosis. i have had frozen shoulders for eight years and again ive been told this is a diabetic thing. LOL im a walking disaster at the moment. mind you i still have my humor and that gets me through. anyway thanks for listening and sharing amanda, i appreciate it.

diamond 🙂
 
Hi Diamond,

I've just joined the forum too, but thanks so much for your story. I have been diabetic for 22 years and can definitely say that I fell into the same trap of not talking to anyone about it and trying to hide it from my friends etc. I didn't look after myself particularly well until i got to a point in my life where i now want children and suddenly my priorities have changed. Try and get your son onto the forum, the support and being able to talk about worries will be so beneficial to him.

I hope they find a way to make your life comfortable and enjoyable again xx
 
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