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Cyclical vomiting syndrome and GERD

DavidJohn1984DavidJohn1984 Posts: 99Member Talkative
edited November 2018 in Diet and Nutrition
Hi there, I have have a condition called Cyclical Vomiting Syndrome and on top of that I have Chronic acid reflux. I believe these are both caused by Fibromyalgia.

I have really poor nutritional intake and have recently been told i’m moderetly malnourished.

i’ve been placed on two x 200 mls of Fortijuce a day.

what I need advice on is my eating, when I try to swallow foods I get reflux at the same time and so it either gets stuck in my throat or I choke on it. 

Is there anyways to reduce this and help me be able to eat properly again?

I’ve lost 5.7 stone so far so i’m really starting to worry.

any advice would be great

thank you

David

Replies

  • Pippa_ScopePippa_Scope Posts: 5,858Member Brian Blessed
    Hi @DavidJohn1984,

    Thanks for sharing this with us, and really sorry to hear about these issues- it must be a really debilitating thing to deal with. 

    Hopefully @KirstenNutritionAdvisor will be able to advise, however as we aren't medical professionals here on the community, it's important that you seek help from somebody involved in your care too. Could you talk to your GP about this issue?
  • DavidJohn1984DavidJohn1984 Posts: 99Member Talkative
    Hi @Pippa_Scope, thank you.

    Yes I had been seeing my Doctor every week since March. I only recently in the last month got the diagnosis. You have to have the same symptoms for over 6 months before you get a diagnosis. 

    However now they are trying to bring my pain levels down as it’s really effecting me.

    i’ve recently started 2 x 200 mls of Fortijuce a day because of how drastic weightloss is with the rare condition.

    however due to the acid reflux soon as I start eating or drinking it starts and it’s putting me off eating anymore of that meal.

    the hospital did speak about a nasal feeding tube but due to the CVS it wouldn’t be a viable option now.
  • Pippa_ScopePippa_Scope Posts: 5,858Member Brian Blessed
    Glad you have a diagnosis @DavidJohn1984, the change in diet must be a really difficult thing to adapt to.

    How are you coping with it all? Although I'm afraid we cannot assist on the medical side of things, I hope you know that you're always welcome to share what's happening and how you're feeling here on the community.
  • DavidJohn1984DavidJohn1984 Posts: 99Member Talkative
    Thank you @Pippa_Scope,

    I am really struggling with it tbh, i’ve been referred for CBT therapy and to speak with a councillor, the hospital want me to see a psychiatric team as well.

    But earlier this year when it started with pretty hard because I had every test imaginable and pretty much everything possible was suspected. So when I finally got the diagnosis it did help relieve some of the horror but finding out actually what is was was scary in itself. I’ve been told it’s usually a disease that effects children, it’s very rare in adults and the prognosis for how long it will last is not known. I believe it’s linked to my Fibromyalgia.

    i’m just struggling with things I can eat, I went from years being a vegan, to eating fish and eggs again, to then eating chicken. Nothing has slowed it down yet. I pretty much live off mash, gravy, Fortijuce and coconut cream. 
  • Pippa_ScopePippa_Scope Posts: 5,858Member Brian Blessed
    Oh I'm sorry to hear this @DavidJohn1984, I can imagine it's a big adjustment that affects your whole way of life so I think it's really positive that you're being proactive in seeking help and support. I really hope it's worthwhile.

    I'm sure you're aware of them already, but I've just been looking at CVSA UK's page and they seem like a knowledgeable team. I wonder if they're worth getting in touch with too?
    Our first point of contact is our helpline on
    0151 342 1660
    or email us
    [email protected]
  • DavidJohn1984DavidJohn1984 Posts: 99Member Talkative
    Thank thank you @Pippa_Scope, I will try them out today. 

    It has been a massive struggle, my life changed completely last year I was doing everything I wanted to this year not being able to get out of bed most days.

    crazy how life changes.
  • Pippa_ScopePippa_Scope Posts: 5,858Member Brian Blessed
    Do keep us updated and let us know how you're doing, @DavidJohn1984. I really hope you find the solutions you need!
  • DavidJohn1984DavidJohn1984 Posts: 99Member Talkative
    Thank you @Pippa_Scope

    i will do that :)
  • DavidJohn1984DavidJohn1984 Posts: 99Member Talkative
    @Pippa_Scope I have spoke with my Dr and he said that the swallowing problem Mayberry linked to the reflux. 

    Can you self refer to S.A.L.T? 

    I’m also seeing the CBT team next week so fingers crossed that helps as my head is all over the place currently.
  • DavidJohn1984DavidJohn1984 Posts: 99Member Talkative
    Hi @Pippa_Scope

    Finally have a Gastro specialist now.

    he diagnosed me with High End Dysphasia.

    He also believe that I could be suffering from another rare condition called Acute Intermmitant Phyphoria so more testing now.

    It takes a lot longer to test for this condition but i’m just happy i’m finally getting support.
  • Pippa_ScopePippa_Scope Posts: 5,858Member Brian Blessed
    Hi @DavidJohn1984, good to hear from you! I'm so glad things are moving forwards and you're finally finding the answers you need. I hope you're doing as well as possible?
  • DavidJohn1984DavidJohn1984 Posts: 99Member Talkative
    Thank you @Pippa_Scope

    I’m a bit of a nervous wreck atm due to my next PIP assessment on Wednesday.

    I had the Flu over Christmas and New year still not fully recovered from it.

    I’m trying my best to remain optimistic.

    still not heard anything about my Tribuneral but I have read that they are taking around a year currently.

    I hope your well?
  • Pippa_ScopePippa_Scope Posts: 5,858Member Brian Blessed
    Wishing you all the best with your assessment @DavidJohn1984, and fingers crossed for the outcome you're hoping for. If you have any questions, do feel free to ask and our members will do their best to advise!
  • DavidJohn1984DavidJohn1984 Posts: 99Member Talkative
    Thank you again @Pippa_Scope I will do that. 

    Have a great day 
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