My daughter has a NG feeding tube and is undergoing tests for a stomach complaint — Scope | Disability forum
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My daughter has a NG feeding tube and is undergoing tests for a stomach complaint

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dmp
dmp Community member Posts: 2 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
Hi, I have a 18 year old daughter, she has suffered awful with her stomach since 2017, she has had many hospital admissions, gp appointment’s, loads of bloods, ct, mri, ultrasound, cameras, pill cam ect, back in January Leah was admitted into hospital for 15 days where she had her 1st NG tube fitted, Leah as had many more due to her vomiting the tube back up, Leah has been amazing, doing all this alone due to “covid” not allowing us to attend appointments or visiting her whilst in hospital, we have no definite diagnosis, however, Leahs “condition” is affecting other parts of her body now, Leah had minor surgery on both toe nails last week due to something that’s causing major infections. Has anyone else suffered the same as Leah? We have now payed for a private consultation which is next week. Leah has been absolutely amazing throughout her horrible experience, Leah has now decided to set up a go fund me page to help raise funds for “SCOPE” hoping she can help others in the same position as herself. 
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi and welcome to the community 

    I am sorry to hear about leah and all she is going through 

    She sounds like an amazing young lady and commend her for wanting to raise money for scope 

    Good luck for her fund raising and her appt this week 

    Keep us updated on her progress 
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  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    edited June 2021
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    Hi @dmp and a warm welcome to our online community.  Thank you so much for joining us and telling us more about your amazing daughter Leah.  She sounds like a real credit to you and I can only imagine how proud you are of her  <3

    It's really touching that Leah is raising money for Scope so please send her a big thank you from all on the online community team.  We greatly appreciate her efforts whilst she is going through such a difficult time.

    In some ways I can relate to Leah as I started with Crohn's Disease (Inflammatory Bowel Disease) when I was a teenager at secondary school.  Although you don't have a definitive diagnosis yet, I can truly empathise with the barrage of investigations and feeling of being in 'limbo' she is probably experiencing.  Are the hospital team providing enough support around both the physical and emotional aspects of her illness?  

    Good luck with the private consultation and please keep us updated with how she gets on.  Also just to let you know, I've moved this thread to our 'Invisible impairments' category which you might like to browse to read others stories, plus amended the title to help others see what your post is about :)

    All the best to the both of you and I hope you can enjoy this lovely weather.  
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  • dmp
    dmp Community member Posts: 2 Listener
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    Awww thank you so much, she sure is ? I passed on your thanks Leah said your more than welcome. Awwww bless you, hope your doing well now tho, we do have chrons disease in the family, they did think this was the problem to start with. We will keep you updated on Leahs progress, thank you so much for your reply xx
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