Refractory Diabetic Gastroparesis - HELP PLEASE!!

[Stuart Jenkins]

Hi Everyone,

I have been suffering with gastroparesis since 2000, although only officialy diagnosed in 2005. Unfortunately my gastroparesis is refractory to all the treatments that have been tried including botox injections to the pyloric sphincter. I vomit 10-20 times every day and am normally admitted to hospital as an emergency every 2-3 weeks due to acute renal failure caused by dehydration which in turn is caused by the continual vomiting.

My Conultants have told me I need to have a Gastric Electrical Stimulator fitted but as it's a fairly new procedure it's not yet approved by NICE and not funded by the NHS, therefore I've had to go to my local PCT for funding. The PCT have refused to fund the operation and now I'm appealing against their decision but I don't hold out much hope.

My diabetes has never been a problem for me and my HbA1c's have always been very good and in single figures throughout the 31 years I've been a diabetic so it's a bit of a mystery how I developed gastroparesis although the consultants think it may be that I play the Trumpet for my living (when I'm well enough, which isn't very often anymore).

I'd love to hear from anyone on this topic, this is truly the worst condition imaginable to deal with and any support/advice would be greatly appreciated.

Best Wishes to you all.
Stuart

 

[ChocFish]

Hi Stuart
I have been suffering from gastroparesis for around 3 years, it gradually got worse as time went by and I know very well what it feels like, constant nausea, throwing up at just the very thought of it, a living nightmare, there seemed to relief.
I developed this condition because my diabetes was uncontrolled at the time, with my bg in the 20s sometimes higher, definitely never lower, even when I didnt digest food anymore my bg remained high.
Eventually I was so ill with various neuropathies I was admitted to a clinic, there they gave me no medication for gastroparesis, instead I was given some soothing herbal tea with a small spoon of manuka (dont ever dissolve this in hot water, has to be slightly cooled), usually it was fennel and I was told to sip this very slowly, a small cup at first, I then progressed to home made cup a soup style, just like some vegetable broth, then liquidised, I found that I was able to digest this quite well, at least I wasnt throwing up so much any more, still not perfect, I was given supplements of flax seed oil, then other vitamin/minerals and as my bg levels became more steady/dropped things became a lot better.
I was told that my neuropathy was a combination of things, first of course was the constant high bg, but also due to lack of vitamins/minerals, not only due to diabetes and medication I was taking but also the junk food that I was living (living???) on at the time.
There was another guy in the clinic at the same time as me, also with gastroparesis, he responded recovered too.
Definitely no fibre or salads, raw veg or fruit, etc - try herb tea and cup a soup things, sip slowly and only small amounts at a time and check if you could be suffering from vitamin/mineral deficiences too, you can have these even if your diabetes is well controlled.
All the best
Karen

 

[ChocFish]

Oh, sorry I forgot to post this link

http://www.digestivedistress.com/main/p ... ?page_id=1

 

[chocoholic]

OMG, that sounds really awful for you both. I have no experience or knowledge of the condition, I just wanted to send a virtual hug and offer my support.
I hope you get the piece of equipment that you need, Stuart and that you can lead a more normal life than you are now.
All the best, chocoholic.

 

[ChocFish]

Thank you for your lovely message, I also hope that Stuart gets better soon
and that the rest of you lovely people dont even have to go there...

Karen x

 

[Stuart Jenkins]

Thank you both for your kind wishes, I too hope that no one has to experiance this illness/condition, I wouldn't even wish it on my worst enemy!!!
Hugs to you all.
Stuart x