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Gastroparesis

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deb74
deb74 Community member Posts: 814 Pioneering
in Rare, invisible, and undiagnosed conditions
I thought I had got IBS but it has been getting worse. I have just been diagnosed with gastroparesis and am getting used to a new life using catheters and an ems machine which I am wired to most of the day. Has anyone else got gastroparesis?
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  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
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    Hi @deb74

    I'm not familiar with gastroparesis so did a little reading and it's where the "stomach can't empty in a normal way" due a suspected issue with nerves and muscles.  Sorry for me stating the obvious to you as I'm sure you already know (!) but just for others who might be reading :) Is the EMS machine (a muscle stimulator) helping?  Also, how are you coping with the new treatment regime?  I hope you have a gastro nurse on hand to contact with any issues.

    I'm not sure if you're aware but there is a charity called Gift UK (Gastroparesis and Intestinal Failure Trust) who offer support and advice on their website, plus share others patient stories too.  While, Guts UK also have a good information page about the condition that you might like to read. 

    Please let us know how you get on and I really wish you well.  I hope things settle for you soon.  
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  • deb74
    deb74 Community member Posts: 814 Pioneering
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    Hi @Cher_Scope. It is a comordid condition associated with ME/CFS which I have had for 8yrs. I think it is quite a rare condition. Thanks for the links to the charity. I hadn't heard of it. The EMS machine seems to be working well. I am quite bloated and a bit uncomfortable at the moment but I am sure it will settle down soon.
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  • deb74
    deb74 Community member Posts: 814 Pioneering
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    Hi @Cher_Scope. I had a look at the giftuk website and it was interesting to see how other people like with gastroparesis. I am Lucky I only have a mild version of that and my me/cfs is relatively mild as well. I feel a bit better than I did yesterday thank goodness!
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  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    edited April 2021
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    Hi @debs74

    I'm glad the GiftUK website helped - I take comfort from reading others stories too and yey for feeling better  :)  Look after yourself and please let me know how you get on.  
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  • deb74
    deb74 Community member Posts: 814 Pioneering
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    Thanks. I will let you know how I am getting on.
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