Cant stop the flare-ups!

Posted , 6 users are following.

I was diagnosed with UC about 18moths ago and it has got progressively worse.  This year I have been admitted to hospital 2 times for 11 days each.  I received intravenous steroids and was sent home with prednisolone (tapering)..  I am also having Infliximab infusions every 6 weeks.  But as soon as I finish the course of Steroids, everything goes wrong and I end up with another flare up – as now and I am awaiting for a call back from the Consultant and fully expected to end up in hospital again.  Does anyone else have these problems?  I have tried the no-fibre diet during a flare up and it doesn’t work.  Am getting desperate!  Any advice would be greatly appreciated.  Thank you.

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9 Replies

  • Posted

    Hi Sue

    I suffered for a few years like you and was taking azathioprine and inflixamab but still having flare ups. It was getting to the point where surgery was becoming my final option having exhausted everything.

    By chance, a new drug became available, (this was a couple of years ago now) and my Consultant asked if I wanted to try it.  So in December 2015 I started on Humira (adalimumab) injections. Within two months I really noticed a difference and my flare ups became less frequent. Within 6 months I finally started to feel really good and my symptoms disappeared and to this day, have never looked back. I am pleased to say that I haven't been to see my IBD nurse or Consultant; I just have regular blood tests. I know works for one doesn't always work for another. Perhaps worth a mention. Good luck and hope you are feeling better soon 

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    • Posted

      Hi Sillip2007

      Thank you for your reply.  I have not heard of this drug and will certainly look into it - you will see that someone else is talking about it below.  I hope it continues to work for you and if I find out about it and get on it I will come back to the group and let everyone know how I get on. 

      All the best

      Sue

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  • Posted

    Hi sue i am like this now i am currently in my 5th flare in 12months! My body is exhusted from all the steriods/codene/ etc, i did get ok'd for humira but i think where i was on alot of steriods i got paranoid about it and didnt start it, well now i have to go thro the process again for humira and this time im going to go thro with it, really really hope you get sorted aswell as its such a horrible illness when not in remission, i tend to stick to plain meals chicken/fish/pork/ pasta/ mash and also little and often seems to help sometimes but everyone is different with uc what wrks for one doesnt normally wrk for the other if that makes sense! ive had uc for 8/9years now and this is the worst ive been, hope you get better soon mate, 

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    • Posted

      Hi Jenny  Thank you for taking time to reply, as you will appreciate, its nice to know that there are others out there going through the same thing, but having said that I would not wish this on anyone!

      I hope the Humira works for you and you can get some life back together.

      I agree with you that little and often seems the best route rather that 3 meals a day.

      8/9 years!, gosh you must be so fed up with it - hope you get sorted real soon.

      Best wishes

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    • Posted

      Hello sue yes its nice to have people to chat to that are goin thro the same as what you are, and also its nice to know ppls experiences with different drugs etc! Yh i hope the humira does wrk ive got 4 kids and i find i struggle more in the mornings takes me a while for my "tummy to wake up" so to speak! Yh 8/9 years but i never even noticed i had it until recently, kind regards 😀

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  • Posted

    Dear Sue,

    I am so sorry that you are having such a rotten time with this horrible, debilitating disease. I am also sorry that I do not have any suggestions for you as to date my UC is being well controlled with mesalazine, but I wanted to offer you my support as you continue to try to find a way forward and get the inflammation under control.

    Take care - and all the very best to you,

    Peter A xx

     

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    • Posted

      Hi Peter.  I appreciate your support and that fact you that you have taken time to reply.  Glad that you are controlled with mesalazine and hope it continues for you. All the best.

      Sue

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  • Posted

    Hi Sue

       You may ask your doctor about Budanofalk enema. It did wonders for me...

      Cheers

     

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