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Advice about biologic please

Posted , 7 users are following.

louisep
louisep

Hi,

I was diagnosed with ulcerative proctitis 5 years ago initially but didn't get any follow up appointment after my colonoscopy. I have since had 2 more colonoscopies and am experiencing a 3rd flare up that has been going on for 12 months now. I've now got a specialist and nurse who are looking after me. I've tried all sorts of different medications including 5asa and prednisilone steroids. I have either bad reactions to the 5asa and limited success with steroids so I'm now looking at a choice of biologic medication. I'm aware of some of the side effects but have to decide on self injection, Humid a, or hospital infusion, Remicade. Can anyone who has experienced these types of medications give me some idea of their success and pros and cons re their side effects. I'm very confused about which method to try and want to make as informed a decision as possible.

Thank you for reading this and I look forward to any help and advice you can offer.

0 likes, 22 replies

22 Replies

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  • zoev2004
    zoev2004 louisep

    Posted

    Thank you all for your replies. I appreciate you all taking the time to do so and although it's not nice that other people are suffering it is comforting to know you're not alone.

    I haven't been advised anything at the moment. I've seen a general surgeon (my gp referred me as he said I had an anal fissure and that's what he thought was causing the bleeding). The surgeon has referred me for a colonoscopy on 10th March but no advice in the meantime on how to deal with it.

    To be honest I think Ive had this for years but it's been around the last year or so that my symptoms have worsened with very severe episodes of diarrhoea, blood and cramps. In between these episodes I have lower back and abdomen pain (particularly bad low down on the left) and bleeding pretty much every time I go to the toilet. The mucous has also increased. I'm also so so tired. Thank you for your support xxx

    • louisep
      louisep zoev2004

      Posted

      Good luck for 10 March. I hope it goes well and they finally answer some questions for you.

      Just a quick bit of advice regarding the tiredness. See your Gp about having a blood test for your vitamin d levels. I was referred for one and my results showed low vit d. I'm now on a weekly dose which the nurse says should be helping with the tiredness. Funnily enough, 3 weeks in to the once a week course and I'm not as tired as I was. Apparently both the illness and the meds interfere with vit d being absorbed. Something I only found out recently.

      Hope this helps you x

    • louisep
      louisep zoev2004

      Posted

      Good luck for 10 March. I hope it goes well and they finally answer some questions for you.

      Just a quick bit of advice regarding the tiredness. See your Gp about having a blood test for your vitamin d levels. I was referred for one and my results showed low vit d. I'm now on a weekly dose which the nurse says should be helping with the tiredness. Funnily enough, 3 weeks in to the once a week course and I'm not as tired as I was. Apparently both the illness and the meds interfere with vit d being absorbed. Something I only found out recently.

      Hope this helps you x

  • gilpill
    gilpill louisep

    Posted

    My daughter was diagnosed with UC she had to stop eating bread and all wheat infact she was given suppositories to use not sure what they are called and it seemed to subside we researched and constantly gut health came up with top up with probotics you can get vitamins containing probotics that get right in there I think they won't do you any harm
    • rj69947
      rj69947 gilpill

      Posted

      Great news, I have omitted bread and tbh it is helping smile also gone gluten n wheat free and lacto free which is also helping smile
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