Giving up?

Posted , 8 users are following.

I’m at the point of giving up with this crappy disease. After 18 months on steroids, several months on biologics complications after complications after complications, I am now on zero drugs whatsoever & my gastro is saying I don’t need to be on anything now as my latest pill cam was “normal”. Yet how come I still feel so crappy? Am so over being told by Drs that Cos one test is “normal” they don’t think necessary to have me on any medication right now! I can’t leave the house, my belly hurts, I spend around 4-5 hours a day on the loo, exhausted & the list goes on. After 30 years of this disease I’m pretty sure I know when I’m sick and when I’m ok (and for the record I was in remission for 20 years and never bothered a gastroenterologist!) Had enough now sad 

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    I feel the same my life was not my own in the end . I have a toilet in my van I spend all of my time wondering when I need the next toilet and so on the pain was getting silly and the drugs not working. Luckily I have a great team in Watford and I'm sitting on the edge of the hospital bed waiting to be prepped for an opp and a stoma bag and to get on with my life . I was pushed to the edge and I cant wait for this to happen .good luck but push your team to get you off the drugs and move on before anything really serious happens

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