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Hey! Anyone else tube fed-other complex issues?

ClareB74ClareB74 Member Posts: 8 Listener
Hi. 
I’m 45, tube fed with TPN, APS, Lupus, FMS, CPS plus other issues. Not too much going on lol! 

Anyone else similar to me? 

I use a powerchair, stairlift, wet room and have an automatic electric door to help me get out the house. I have a wonderful husband whom I’ve been with since 13. 

Just wanted to say hello!

x

Replies

  • Ross_ScopeRoss_Scope Posts: 4,186

    Scope community team

    Hi @ClareB74

    Welcome to the community and thanks for giving us an introduction to yourself. 

    I'm a member of Scope's Community Team, so feel free to give us a shout if you ever need any support or advice on the community in terms of getting around and figuring stuff out :) 

    Glad to hear you have a wonderful husband, that's a long time to have been with someone and it's great that you have found someone to spend that time with.
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  • janer1967janer1967 Member Posts: 11,201 Disability Gamechanger
    Hi and welcome from me 

    I dont have your issues I am an amputee and visually impaired so use wheelchair and power chair outside 

    I live in a bungalow with my 14 year old son who is my rock 
  • endowarrierqueen96endowarrierqueen96 Member Posts: 25 Connected
    I once knew a boy who required a trach
  • chiariedschiarieds Community Co-Production Group Posts: 9,195 Disability Gamechanger
    Hello @ClareB74 -  welcome to the community from me too. I don't have your particular set of problems, but enjoy chatting with our members that have many & various disabilities. I hope to see you around the forum. :)
  • lisathomas50lisathomas50 Posts: 4,361 Disability Gamechanger
    @ClareB74 hi I have lupus  I know how you feel being tube fed my lupus caused a stroke and I couldnt swallow so I was tube fed I hated it but it had to be done I no longer need it  but I have empathy with you  did your lupus cause uour other problems 

    I also have heart murmer copd  over active thyroid brittle bones  spondylitis and a left sided weakness 
  • ClareB74ClareB74 Member Posts: 8 Listener
    @ClareB74 hi I have lupus  I know how you feel being tube fed my lupus caused a stroke and I couldnt swallow so I was tube fed I hated it but it had to be done I no longer need it  but I have empathy with you  did your lupus cause uour other problems 

    I also have heart murmer copd  over active thyroid brittle bones  spondylitis and a left sided weakness 
    Hey Lisa

    Thanks for replying hun. Lupus has attacked my blood, caused kidney damage, wrecked my gut and intestines which I needed ops for, FMS is secondary to the SLE. I suffer with chronic pain syndrome too, plus a few other ailments. X
  • lisathomas50lisathomas50 Posts: 4,361 Disability Gamechanger
    I am the same do you have to have blood thinners my liver and kidneys have slight damage  and I have eating problems but no longer have a tube it must be awful havei g the tube all the time I have chronic pain syndrome but did pain management that helped me 

    My lupus caused my other problems 
  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    Hello @ClareB74  I’m Emma, great to have you with us. A warm welcome to the community.
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