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First real flare !!! Help

Posted , 6 users are following.

michelle34409
michelle34409

Hi all I'm having my first real flare of proctitis which started almost 4 weeks ago I am having 2-3 watery bm a day with blood and stomach cramps on the centre of my lower stomach and blood and mucus without bm . I was using pentasa enemas but my nurse took me off them because she thought it could be an intolerance causing the symptoms . I was put on pred foam enemas once a day and symptoms eased a little and I was only having 1-2 watery bm first thing in the morning. I now have good days and bad days some days I can't have a bm at all but then the next day I go more and the cramps are worse.

I've had 2 lots of stool checked for infection which showed nothing. My nurse is now talking about oral steroids but I'm really not keen . Surely there's something else is try 1st ?? I'm in the uk by the way

0 likes, 36 replies

36 Replies

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  • michelle34409
    michelle34409

    Posted

    Hi all well I've been given prednisiolone tablets starting at 40mg for week along with salofalk granules long term and calcium tablets . I'm also having to carry on with the pred foam enemas. I've been told if I'm no better in a week I will have to be admitted . Please keep everything crossed this doesn't happen and the steroids kick in .

    • carrie303
      carrie303 michelle34409

      Posted

      That’s good news Michelle. Don’t be disappointed if they don’t start to work immediately. That’s where I always go wrong.  It takes time but once it starts to work It’s marvellous. Good luck. Keep us posted. x
    • michelle34409
      michelle34409 carrie303

      Posted

      Thank you . I just hope there's some improvement before next week being admitted to hospital is not on my to do list . I will keep you posted x

    • carrie303
      carrie303 michelle34409

      Posted

      I was in this position afew weeks ago but they did a blood test at the hospital and my levels had got better so persevered with the steroids and fingers crossed all been fine since and didn’t need admitting. x
    • michelle34409
      michelle34409 carrie303

      Posted

      Glad things have got better for you. My daughter has mock gcses next week so really doesn't need this worry . I start taking them tomorrow morning so I 'll let you know how things go xx

  • pca
    pca michelle34409

    Posted

    Hi Michelle,

    All the very best with the medications. Everything which I can physically (and morally) cross has been crossed, and I look forward to hearing good news from you shortly.

    Kindest regards and good luck!!

    Peter A xxx

    • michelle34409
      michelle34409 pca

      Posted

      Thank you Peter. I will let you know how it goes xx
    • pca
      pca michelle34409

      Posted

      Please do.  I'll appreciate that!

      Blessings!

      Peter xxx

  • michelle34409
    michelle34409

    Posted

    Hi all well I've almost completed day one and I've gone from being on a high and having energy I've not seen for weeks first thing this morning to being tearful and just wanting to sleep . Is this normal after only one dose ?

    • carrie303
      carrie303 michelle34409

      Posted

      Yeah Michelle. This happened to me. It’s called a steroid high. Don’t worry it will pass. Everyone just takes different time.

      The main thing I suffer once they’ve been set in is insomnia. That’s for the first few weeks after taking them. 

      xx

    • michelle34409
      michelle34409 carrie303

      Posted

      Thank you . I feel better knowing it's not just me . To be honest I've had some insomnia since using the pred foam enemas which also affected my menstrual cycle this month although the nurse claims they don't have side effects . I'm now using the pentasa enemas again at night .

  • michelle34409
    michelle34409

    Posted

    Hi all well so far so good . I became symptom free after 3 days of 40mg pred . I'm now on day 3 of tapering at 35mg but I have noticed I'm very snappy with my family for no apparent reason. Is this normal ?

  • pca
    pca michelle34409

    Posted

    Hi Michelle,

    So pleased that you're now symptom-free; that's excellent news.

    As for the other point, never having been prescribed the steroid, I have no practical experience of it. Others here almost certainly will be able to assist you with an answer. Otherwise, maybe a 'phone call to your GP would provide and answer?

    I really hope the flare-up is a thing of the past, and you and the family can look forward to and enjoy your Christmas and your 40th birthday in the New Year. You deserve nothing less.

    With all good wishes as always,

    Peter A

  • ruari1
    ruari1 michelle34409

    Posted

    Yes, Prednisalone often makes me a bit prickly at first, but soon passes! Just take a deep breath and count to 10! Believe me, well worth it! 
  • michelle34409
    michelle34409

    Posted

    Hi all well I've now finished my 8 week course and other than some blurred vision and moodiness when on a high dose I can honestly say I'm so glad I went on them .I actually managed to lose a little weight although that may have been regained over christmas. Thank you all for your wise words at the start. Fingers crossed my symptoms don't return anytime soon .

    • pca
      pca michelle34409

      Posted

      YAY!  What a super result, Michelle!!  You must be so relieved  - and thank you very much for keeping us up to date with your progress and experiences, which I am sure others will have found to be of great help. 

      So very, very pleased for you. Now sit back and have a fabulous 40th. I'm nearly 65, so you're a mere girl as far as I'm concerned!!

      With all good wishes as always,

      Peter A xxx

       

    • michelle34409
      michelle34409 pca

      Posted

      Thank you so much Peter . You really were a great help with your wise words .

      I now intend to thoroughly enjoy my 40th .

      Thanks again xx

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