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What to do

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Alfielefoo
Alfielefoo

hello all, I posted a couple of weeks ago, but now have the 'official' diagnosis,

so crohns terminal ileum, 20cm stricture etc.

they wanted me on steroids and Azathioprine and I fancy neither, mostly as I'm 90% bonkers and I will either go more bonkers and think I've got all sorts of side effects.

has anyone else managed to control symptoms via diet? The dietician recommended 4 weeks on liquid diet as dr is concerned about disease progression.

i did ask him how 'bad' it was and he chuckled.

thanks 

 

0 likes, 5 replies

5 Replies

  • lynne42182
    lynne42182 Alfielefoo

    Posted

    Hi  I'm really sorry your havin a such a bad time of it

    ive never tired the liquid diet to help control a flare, I'm much more of a take the steroids and they always works for me, azathoprine not so much, 

    however, I'm have been on the liquid diet for about a mth and it's not too bad, I also have strictures and it's to help me get more nutrients in to my body, sometimes it can be hard, the little drinks are a real effort and it can feel like forever to get them down, but when I'm behaving and drinking them I find I've no pain and my bowel is at least working!

    the only thing I will say about the pills, is (as my husband said) we don't all get the side effect, OK with the steroids there are some that we all get but, that's the same with most pills!

    ive had crohns for 20+ years and the one thing I learnt is read the insert, if there's anything there I need to be aware or OK, I know, DO NOT research them, it will drive you nutty!

    if your doctor knows you well and it sounds like they do, then ask for help from them, tell them what you are scared of and see if you can perhaps have a plan if you think that you've got one of the side effects, there is no problem with being safe!

    also get yourself a good support network, there are a lot of groups out there that will help, and support you, so it won't feel lonely!

    Good luck with the diet I hope it goes well, just leave a message if I can help more 

    Lynne x

  • stephaney28634
    stephaney28634 Alfielefoo

    Posted

    Hi Alfielefoo, I'm sorry you are having a terrible time. I suggest you seek a second a opinion from another Doctor. I am on Azathioprine for my flare up it is doing nothing for me just feel nauseous. Hope you find a meds that help you
    • Alfielefoo
      Alfielefoo stephaney28634

      Posted

      Thank you!

      This weeks bloods are 'normal', so hopefully the flare is settled.

      How long have you been taking them?

    • stephaney28634
      stephaney28634 Alfielefoo

      Posted

      Hi, I have been taken them for months now. It's good your bloods are back to normal.wink
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