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Re-start of flare and what to do? Please help.

Posted , 3 users are following.

louise43352
louise43352

Hi all, i had a terrible flare between april-august time this tear, finally seemed to settle with medication but things seem to have got worse again. i just dont know what to do with myself, increase frequency, increased urgency and loose bowels, occasionally not making it to the loo at times which is awful and distressing. Its probably my own fault as im not particularly compliant with my medication but now i dont know what to do. please help....

0 likes, 4 replies

4 Replies

  • jamie44738
    jamie44738 louise43352

    Posted

    Sorry to hear that Louise.

    What medication are you on?

    After many attempts at other medication, they finally put me on Infliximab Infusions and Azathioprine, which together worked a treat. I'm going to the toilet now about once per day.

    I'm based in the UK, so I'm not sure if it'll work differently if you're abroad? I know Infliximab is a very expensive medication.

    Do you have an IBD team you can call?

    Hope you're feeling better soon.

    Jamie

    • louise43352
      louise43352 jamie44738

      Posted

      Hi Jamie, I'm in the UK too. I stupidly stopped taking my meds probably 2 or so months ago as things were good, as im not keen on being on meds, i was on colazide and my IBD nurse started me on azathioprin but i was worried about the immuno suppressant qualities and other side effects. Now i dont know what to do as i think the IBD team are at a loss with me 😦

    • jamie44738
      jamie44738 louise43352

      Posted

      Do you mind me asking which hospital? I'm with Milton Keynes UH, they seem to have got me under control.

      I've found that you just need to keep badgering them.

      If you're going through a flare, call the IBD team at least every other day so they know what you're going through.

      I'd read about Azathioprine and I was scared about taking it (but I'd also been on Asacol and Prednisolone with no issues). The docs started me on it and I had no side effects (taking it just after dinner).

      I've not heard of Colazide. They use immunosuppressants because our bodies are attacking good tissues. The immunosuppressants slow that process down, allowing scarred tissue to heal.

      Have you read up on Azathioprine? You don't sound new to this stuff so you probably know already, but the Crohns and Colitis charity website has tonnes of information on everything you'd need to know. Links below:

      https://www.crohnsandcolitis.org.uk/

      https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/azathioprine-mercaptopurine

      Hope this helps.

      Jamie

    • laciaboots
      laciaboots louise43352

      Posted

      you need to go back on meds. your uc needs them if u want to control it etc. rather meds than uncontrollable uc and could end in operation.

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