Newly diagnosed - where do I start?

Posted , 3 users are following.

Hi everyone, I'm 28 and I've been diagnosed with Crohn's disease. Its all through my colon and is more severe in the transverse section.

I have a referral for the IBD clinic but can't get an appointment until 19th October. I'm taking mesalazine and I'm on a low fibre diet. I'm also on medication for anxiety, iron and b12 for anaemia.

Until I can go to my hospital appointment, does anyone have any tips or advice on where to start? It all feels so overwhelming! 

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5 Replies

  • Posted

    Hey, I'm sorry to hear you have this crappy disease. I've suffered with crohns for 30 years & it's not pleasant. If you can try & get an earlier appointment then great, is the mesalasine helping? If not maybe your gp can prescribe some pain medication or Imodium for you? I find a hot water bottle helps a bit & live with mine attached to me lol.. Anyway, good luck I hope you get on a good treatment plan soon xx 

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    • Posted

      Thanks for your response! I know the appointment situation is so frustrating, I keep checking back for cancellations! I think the mesalazine is helping but its so hard to tell! I will try a hot water bottle thank you!

      How do you keep your energy up? xx

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    • Posted

      I'm a single mum of two girls (11&2) so have to function lol. I get them into bed by 6.30 & I go to bed too. I don't tend to go anywhere & in mornings me & little one tend to lay in bed & watch peppa pig lol.. I'm on steroids & humira & have developed Cushing's as well so I'm pretty sick right now (just got out of hospital last Thursday). But I power through with a lot of pain killers & meds lol... Hope you get a cancellation appointment soon. Call daily as they do happen xx 

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  • Posted

    Hi I can understand your anxiety. It's a huge problem, when we have to wait ages for an appointment. 

    ?The only advice I can give is to do as much research as you can into the condition. And to make notes to take to your appointment of all of your symptoms  and all the questions you want to ask. Try and do some breathing exercises to calm yourself down. good luck

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