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Hey! Anyone else tube fed-other complex issues?

ClareB74

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

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Comments

Ross_Alumni

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.

janer1967

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

endowarrierqueen96

I once knew a boy who required a trach

chiarieds

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.

Lisatho11987777

@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

ClareB74

lisathomas50 said:

@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

Lisatho11987777

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

emmarenshaw

Hello @ClareB74 I’m Emma, great to have you with us. A warm welcome to the community.