Crohnes active

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Hi my name bev had crohnes 15 months had part of my bowel removed due to narrowing of my small bowel ok for 6 months then started havin sickness and belly pain so went back to dr where i had a camera up and down results crohnes spread into large bowel now so been on questain lanosople and crohnes med and steriods meds are Azathioprine Budenofalk steriods no better so ibd nurse said stop taking them due to pain and more sickness she phoning me monday for plan again might have to change steriods but she told me to stop the Azathioprine now to see if i feel any better crohnes have effected my life so bad not wanting to eat due to feeling sick most days get very tield all the time im happy when im sleeping as i dont feel the pain or feel sick its all new to me nures told me if no better monday she try me on some more meds who they give to children for crohnes i dont want another op as i wasnt gud after that but now my crohnes have spread 6 sections of my bowel so hopin there come up with somethink just want to feel better and enjoy life but every day is differnt and hard goin love advice please x

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4 Replies

  • Posted

    Hi Bev

    Had Crohns for 40+ years and had 6 resections.

    I now have numerous narrowings. I find that a very low fibre diet helps with the pain.

    I have been until recently self injecting Humira which put the Crohns into remission, I think you should ask your specialist about trying this treatment and also discuss about going on a low fibre low residue diet.

    All the best


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    • Posted

      Hello, I've noticed your reply to Bev on how you have been in remission after using Humira. I too am doing Humira injections since middle of Nov 2017. Wondering how long before you noticed improvements. I was diagnosed with Crohns 40 yrs ago had a total colonectomy at that time. Been in remission over 20 yrs then even though I had no real symptoms little tummy ache now and then Gastrologist found active Crohns in small bowel using Pill cam and x-ray with iv contrast, via Humira. But I seem to be having more trouble after Humira such as diarrhea, bloody, stomach cramps, muscle ache. Just wondering if you have experienced any side effects of Humira like this or maybe this IS the active Crohns and Humira is not working. I really can't say I've been sick since 1979. Been on various meds the last one Pentasa only since1997 nothing else ( because I was in remission) until August 2017 when Gastrologist found Active Crohns. Now I just feel miserable. Any advice.

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    • Posted

      Hi Sandra It took probably about 2 to 3 months before I went into remission with Humira I was also taking 6 mercaptopurine as well.

      I have been taken off Humira now, about 4 months and symptoms are coming back so had an Mir and seeing gastro specialist next month with a view to going back on Humira.

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    • Posted

      Hello Bev, so then you had no side effects from Humira just good things from it. Sorry to hear that you may be out of remission I will pray for your healing thank you again for getting back with me.
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