Gastroparesis.

[Mrs Vimes]

"Aww thank you for the support . I do hear a lot of "it could be worse" . I guess it can be ! ))"
Hard pushed to think how much worse it could be - you don't have a choice about food, you have to eat at some stage.
I bet those people who say it could be worse think they are giving you support - bless them.
You are obviously a strong person though. Personally I'd probably swear at them in a highly inappropriate manner.
Thank god for these forums were people can turn for support and advice.

 

[Pipp]

Most of the support I have found has been for people who have gastroparesis but without diabetes and that is significantly different for me because as we all know diabetes, eating , blood sugars and such make a difference . I also have found it seems to be much more common in a much older group than I , as well as more common in men . Not to say there is anything wrong with that but it is a bit different just because of our lifestyles .

I am interested in finding out how the acupuncture helped you . If you don't mind ?

My symptoms stared with eating in the mornings and not being able to eat again for at least 12 hours because I would get that feeling of being full along with nausea all day . I now have the same issue you describe with not feeling hungry at all . I am mostly on liquids now . With all of this can you believe I can't lose weight ? Lol .

Finding a solution was trial and error. I am fortunate to have had surgery to stop the abdominal blockages. A mainly liquid diet before my surgery helped. I learned how to massage my abdomen where food was trapped to help move it along, and drank plenty of water. Luckily I discovered the Newcastle research and followed the diet which helped with weight loss and BG control. I accept that this will be different for T1 though. Since surgery I have times when I struggle to eat solid food. This is when I have green smoothies. Small amounts several times a day. I do sometimes still have mild dysphagia, where food gets stuck in my throat due to the swallowing difficulty. This is a separate problem due to allergy. I have to be careful with such things as chia seeds as they swell up and can cause blockages.
I really don't know how or why the acupuncture and reflexology help. Or a pampering facial and massage at a spa. Could be a placebo effect, but certainly make me more relaxed. I also meditate, something I have done for many years now for pain relief. Pain is always intensified when stressed or tense, so I do try to stay calm, and find something else to take my mind from the negative stuff. Not that I am trivialising your situation. Sometimes it can all seem too much. I do think you may be able to find a specific support group for Gastroparesis and diabetes though. I have heard that diabetes can be a contributary factor.

Oh, and I do believe it is difficult to lose weight, despite the digestion problems. I hope you find a solution soon.

 

[Indy51]

There are a number of threads about gastroparesis on the forum. I don't have it personally, but I'm a huge fan of Dr Bernstein's work and he has a chapter about it in his book and says a lot of diabetics suffer from it to various degrees. I'll add here some of the information I posted on another thread.

Found these articles on Dr Bernstein's website that might be of help:

http://www.diabetes-book.com/gastroparesis-can-control/
http://www.diabetes-book.com/low-blood-sugar-gastroparesis/
http://www.diabetes-book.com/exercises-facilitate-stomach-emptying/
http://www.diabetes-book.com/controlling-gastroparesis-with-medication/

One of the simpler solutions Dr Bernstein recommends is sugar-free gum after eating to stimulate saliva and gastric function.

Dr Datis Kharrazian (author of "Why Isn't My Brain Working") recommends the following (and slightly odd) "exercises" to help re-activate the vagus nerve:

(1) singing loudly
(2) prolonged strong gargling - i.e. making a loud noise and prolonging as long as possible, preferably to the point of tears
(3) using tongue depressors to activate the gag reflex (governed by the vagus) - probably best done with an empty stomach I guess

 

[Pipp]

Thank you, @Indy51
Had I known this before surgery I could have been so much more in control.
Hope that @Anaelena and @donnellysdogs find this useful too.

 

[Anaelena]

There are a number of threads about gastroparesis on the forum. I don't have it personally, but I'm a huge fan of Dr Bernstein's work and he has a chapter about it in his book and says a lot of diabetics suffer from it to various degrees. I'll add here some of the information I posted on another thread.

Found these articles on Dr Bernstein's website that might be of help:

http://www.diabetes-book.com/gastroparesis-can-control/
http://www.diabetes-book.com/low-blood-sugar-gastroparesis/
http://www.diabetes-book.com/exercises-facilitate-stomach-emptying/
http://www.diabetes-book.com/controlling-gastroparesis-with-medication/

One of the simpler solutions Dr Bernstein recommends is sugar-free gum after eating to stimulate saliva and gastric function.

Dr Datis Kharrazian (author of "Why Isn't My Brain Working") recommends the following (and slightly odd) "exercises" to help re-activate the vagus nerve:

(1) singing loudly
(2) prolonged strong gargling - i.e. making a loud noise and prolonging as long as possible, preferably to the point of tears
(3) using tongue depressors to activate the gag reflex (governed by the vagus) - probably best done with an empty stomach I guess

I will definitely look into his book and read up on the website. Thanks you for that .

Diabetes causes gastroparesis because of nerve damage. Just like neuropathy. I saw a neurologist once who told me that Diabetes is interesting because you can never predict where complications will occur . Some people have kidney trouble , some have neurological, some have eye issues some have all and some have none . Strange how it works.

 

[Anaelena]

Finding a solution was trial and error. I am fortunate to have had surgery to stop the abdominal blockages. A mainly liquid diet before my surgery helped. I learned how to massage my abdomen where food was trapped to help move it along, and drank plenty of water. Luckily I discovered the Newcastle research and followed the diet which helped with weight loss and BG control. I accept that this will be different for T1 though. Since surgery I have times when I struggle to eat solid food. This is when I have green smoothies. Small amounts several times a day. I do sometimes still have mild dysphagia, where food gets stuck in my throat due to the swallowing difficulty. This is a separate problem due to allergy. I have to be careful with such things as chia seeds as they swell up and can cause blockages.
I really don't know how or why the acupuncture and reflexology help. Or a pampering facial and massage at a spa. Could be a placebo effect, but certainly make me more relaxed. I also meditate, something I have done for many years now for pain relief. Pain is always intensified when stressed or tense, so I do try to stay calm, and find something else to take my mind from the negative stuff. Not that I am trivialising your situation. Sometimes it can all seem too much. I do think you may be able to find a specific support group for Gastroparesis and diabetes though. I have heard that diabetes can be a contributary factor.

Oh, and I do believe it is difficult to lose weight, despite the digestion problems. I hope you find a solution soon.

Oh I am at the point that I will try anything even if it has a placebo effect I would be content and promise not to ask why if it works . I am all about pampering too , if I could only get insurance to pay for it

 

[ButtterflyLady]

Thanks for the tip about flax seed oil, I will look into that. I have slow colonic transit and take laxsol, lactulose and metamucil (psyllium) for it. I think the metamucil is very good for it, and I certainly notice if I forget to take it. I'm hoping flax seed oil will help.
I also have mild issues with delayed gastric emptying; nothing like gastroparesis though. The slowness of my GI tract started in childhood, years before diabetes, and seems to run in the family. I have no signs of diabetic neuropathy yet, thankfully, but it wouldn't surprise me if I got some eventually, so I am interested in learning about how it can affect the GI tract.

Luckily domperidone is still available in NZ and I don't seem to be at risk of cardiac or movement related side effects from it, at this stage. I feel sorry for people in the UK because I don't think there is any other medication that can help a slow stomach work better like domperidone can

An interesting thread, thanks for starting it.

 

[Anaelena]

Thanks for the tip about flax seed oil, I will look into that. I have slow colonic transit and take laxsol, lactulose and metamucil (psyllium) for it. I think the metamucil is very good for it, and I certainly notice if I forget to take it. I'm hoping flax seed oil will help.
I also have mild issues with delayed gastric emptying; nothing like gastroparesis though. The slowness of my GI tract started in childhood, years before diabetes, and seems to run in the family. I have no signs of diabetic neuropathy yet, thankfully, but it wouldn't surprise me if I got some eventually, so I am interested in learning about how it can affect the GI tract.

Luckily domperidone is still available in NZ and I don't seem to be at risk of cardiac or movement related side effects from it, at this stage. I feel sorry for people in the UK because I don't think there is any other medication that can help a slow stomach work better like domperidone can

An interesting thread, thanks for starting it.

I am not sure about the UK really as I am in the U.S.. but domperidone is not legal for use here . I did take it during a brief period while not in the U.S. and it did seem to help some.

 

[ButtterflyLady]

I am not sure about the UK really as I am in the U.S.. but domperidone is not legal for use here . I did take it during a brief period while not in the U.S. and it did seem to help some.

I read a post here a few days ago saying it is not legal for use in the UK either.

 

[donnellysdogs]

There are a number of threads about gastroparesis on the forum. I don't have it personally, but I'm a huge fan of Dr Bernstein's work and he has a chapter about it in his book and says a lot of diabetics suffer from it to various degrees. I'll add here some of the information I posted on another thread.

Found these articles on Dr Bernstein's website that might be of help:

http://www.diabetes-book.com/gastroparesis-can-control/
http://www.diabetes-book.com/low-blood-sugar-gastroparesis/
http://www.diabetes-book.com/exercises-facilitate-stomach-emptying/
http://www.diabetes-book.com/controlling-gastroparesis-with-medication/

One of the simpler solutions Dr Bernstein recommends is sugar-free gum after eating to stimulate saliva and gastric function.

Dr Datis Kharrazian (author of "Why Isn't My Brain Working") recommends the following (and slightly odd) "exercises" to help re-activate the vagus nerve:

(1) singing loudly
(2) prolonged strong gargling - i.e. making a loud noise and prolonging as long as possible, preferably to the point of tears
(3) using tongue depressors to activate the gag reflex (governed by the vagus) - probably best done with an empty stomach I guess

Thanks for the tips.... It's strange that both Anaelena and I also have similar reactions to chemicals though... No sugar free gum for me...that I definitely is the biggest contributor to pain from aspartame...

Found it also very interesting that others say they don't feel hungry. I've written this in so many posts that I never feel hunger that again I thought I was the only one that felt like this...

Its just good for me to read other people exist that also end up with blockages etc.

So much help here..as usual..

Wonder why though that Anaelena n I both find wecan't take laxatives and we both have chemical intolerances....that similarity has truly astounded me.

Some interesting reading to do later! Thank you.

 

[donnellysdogs]

I am not sure about the UK really as I am in the U.S.. but domperidone is not legal for use here . I did take it during a brief period while not in the U.S. and it did seem to help some.

Its probably a "double red" drug in UK..(only prescribed by consultants in very special one off cases....and the consultants have to beg on bended knees!!)....

 

[phoenix]

Its probably a "double red" drug in UK..(only prescribed by consultants in very special one off cases....and the consultants have to beg on bended knees!!)....

It seems that you can still buy it from the chemist (Motilium) or even at UK online pharmacists .The pharmacist does have to ask you about your use of it and wouldn't be able to sell it to you on a regular basis,
https://www.gov.uk/drug-safety-update/domperidone-risks-of-cardiac-side-effects(I quickly found a UK online source and it is sold but only in packs sufficient for 2 days)
My mother had Parkinson's and it was one of the drugs on her regular prescription . Wiki tells me that it is used with Parkinson's because it is thought not only to help with the GI problems but it may also enhance the availability of L dopa. There is though a risk of cardio toxic effects,especially in the elderly;hence the increased caution.
She died just before the new directives came into force.
There are risks with every drug as well as benefits; I'm sure she would have preferred to continue with a drug that sometimes helped increase her quality of life rather than have it withdrawn because of the risk. (sadly it only alleviated the symptoms sometimes; it didn't get rid of them) https://en.wikipedia.org/wiki/Domperidone

 

[donnellysdogs]

You can buy it from the chemist (Motilium) or even at UK online pharmacists .The pharmacist does have to ask you about your use of it and wouldn't be able to sell it to you on a regular basis,
https://www.gov.uk/drug-safety-update/domperidone-risks-of-cardiac-side-effects
My mother had Parkinson's and it was one of the drugs on her regular prescription . Wiki tells me that it is used with Parkinson's because it is thought not only to help with the GI problems but it may also enhance the availability of L dopa. There is though a risk of cardio toxic effects,especially in the elderly;hence the increased caution.
She died just before the new directives came into force (
There are risks with every drug as well as benefits; I'm sure she would have preferred to continue with a drug that sometimes helped increase her quality of life rather than have it withdrawn because of the risk. (sadly it only alleviated the symptoms sometimes; it didn't get rid of them) https://en.wikipedia.org/wiki/Domperidone

Thanks Phoenix... Learn something new everyday!!!

 

[WeeFergus]

I can't help at all but just wanted to send some virtual hugs to all of you. Those of us who have diabetes (and perhaps some other minor conditions) sometimes feel sorry for ourselves but threads like this make me feel that we don't have it too bad at all.

I'm hoping you all find solutions and relief from what is obviously a very unpleasant problem.

 

[Pipp]

Oh I am at the point that I will try anything even if it has a placebo effect I would be content and promise not to ask why if it works . I am all about pampering too , if I could only get insurance to pay for it

Haha, I would be happy if NHS would pay for my spa visits too.
I treat myself, because I am worth it.

 

[Brunneria]

No sugar free gum for me...that I definitely is the biggest contributor to pain from aspartame...

You could try this 'Simply Gum - no artificial ingredients:
http://www.amazon.com/Simply-Gum-Natural-Chewing-Cinnamon/dp/B00I4W2VX0
It does have sugar in it, but at 3 calories a piece, it ain't gonna send you hyper.
Comes in several flavours.

And then there's this too. Greek 'gum mastic' I've had it in Greece, and thought 'weird, but really quite OK'

http://www.ebay.co.uk/itm/Greek-Mas...Domain_0&var=460671888051&hash=item25a625291c

And, of course, i have to try it again now.

 

[donnellysdogs]

I can't help at all but just wanted to send some virtual hugs to all of you. Those of us who have diabetes (and perhaps some other minor conditions) sometimes feel sorry for ourselves but threads like this make me feel that we don't have it too bad at all.

I'm hoping you all find solutions and relief from what is obviously a very unpleasant problem.

Thanks from me.... The worst thing to add on (at least for me) is getting worried when you haven't been to loo for 24hrs. I end up going through the food I ate up to 3 days previous or have to consider stress which has a huge impact. I think stress makes things worse which is why we seem to find some pampering good for us. Then it's worry whether we are going to end up totally blocked up or whether we may go to loo in the following hours. I now have hospital enemas as a back up to give myself just incase. The time and cost of having to call paramedics out is horrendous but nothing but morphine intravenous or paracetamol intravenous helps to take away the pain. Then because of the morphine or gas and air even when our bowels are cleared the effects from those drugs can then impact days later.

Eating and foods has to be very carefully considered. I've always been lean but keeping weight on with foods is an issue. Yesterday for example I lost two pound that I cannot afford to lose. I admit to weighing myself every day to ensure I keep weight on! Like previous poster said... I don't ever get hunger pangs or anything in my brain telling me to eat unless I am going hypo....and that is my signal as suddenly I think "I need to eat".

It's not all bad though as having natural foods has to be a bonus in many ways. At least that's what I think nowadays... I am lucky that hubby nowadays eats the same as me (at least when we are homes together) and actually does all the food and leaves for me otherwise I just wouldn't bother eating.

I'm sure that we don't feel sorry for ourselves. I think we live with different lifestyles of eating to the majority but we are actually lucky in many ways that we eat better nourishment and find more natural foods which keeps us reasonably well.

May be easier for me as I have always been a low career except a small period of time when I was advised to eat porridge n toast for breakup fast which was the worst thing ever for me personally.

Thank you from me for your thoughts... Very much appreciated and very kind...

 

[donnellysdogs]

You could try this 'Simply Gum - no artificial ingredients:
http://www.amazon.com/Simply-Gum-Natural-Chewing-Cinnamon/dp/B00I4W2VX0
It does have sugar in it, but at 3 calories a piece, it ain't gonna send you hyper.
Comes in several flavours.

And then there's this too. Greek 'gum mastic' I've had it in Greece, and thought 'weird, but really quite OK'

http://www.ebay.co.uk/itm/Greek-Mas...Domain_0&var=460671888051&hash=item25a625291c

And, of course, i have to try it again now.

Thank you so much @Brunneria. I miss my chewing gum, I will have a look now to try and find the ingredients to see if I can cope with any other chemicals listed. It's amazing how much aspartame and sweeteners and preservatives can cause so much pain and also bad sleep and sleep talking and restless legs....

 

[robert72]

I was on Domperidone until my Dr changed it to Metoclopramide due to my cardiac condition. I only have mild motility problems, but it seems equally effective.

 

[Anaelena]

It seems that you can still buy it from the chemist (Motilium) or even at UK online pharmacists .The pharmacist does have to ask you about your use of it and wouldn't be able to sell it to you on a regular basis,
https://www.gov.uk/drug-safety-update/domperidone-risks-of-cardiac-side-effects(I quickly found a UK online source and it is sold but only in packs sufficient for 2 days)
My mother had Parkinson's and it was one of the drugs on her regular prescription . Wiki tells me that it is used with Parkinson's because it is thought not only to help with the GI problems but it may also enhance the availability of L dopa. There is though a risk of cardio toxic effects,especially in the elderly;hence the increased caution.
She died just before the new directives came into force.
There are risks with every drug as well as benefits; I'm sure she would have preferred to continue with a drug that sometimes helped increase her quality of life rather than have it withdrawn because of the risk. (sadly it only alleviated the symptoms sometimes; it didn't get rid of them) https://en.wikipedia.org/wiki/Domperidone

It seems to have a lot of "off brand " uses . People were smuggling it in here for all sorts of things but the biggest consumers were breast feeding women who used it to increase milk production. Imagine how dangerous this would be for an infant ?

I do agree that every drug has risks and benefits .it is sad that regulatory agencies can't see more of the benefits in some drugs .