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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

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  • Anonymous111
    Anonymous111 michelle34409

    Posted

    Oh Michelle, I’m so sorry this is happening to you.

    Oral steroids are incredibly powerful - they would definately help.

    I understand your hesitance, but short courses usually dont cause problems. Its long term steroids which are dangerous.

    If it were me - I’d take a short course of steroids - see if it makes it better. With a bit of luck - you might never get another flare again and can move on and forget it.

    Other oral treatments like Azathioprine and Methotrexate are really strong drugs and we dont put people on them unless they’re getting recurrent episodes.

    • michelle34409
      michelle34409 Anonymous111

      Posted

      Thank you for your reply . I have spoken to my nurse this morning and she's having a meeting with my consultant to see what other options we have .I'm used to the blood and mucus but it's the cramps I can't deal with.

  • ruari1
    ruari1 michelle34409

    Posted

    Have you had any internal examination such as a colonoscopy?
    • michelle34409
      michelle34409 ruari1

      Posted

      I had a sigmoidoscopy at the end of September and was started on the pentasa enemas straight away . They worked within 2 days and things were great but after 4 weeks I started with the symptoms
  • carrie303
    carrie303 michelle34409

    Posted

    Hi Michelle,

    I’m currently on a short course (9 weeks) of oral steroids due to a flare up. 

    I loathe taking them but they work absolute wonders. I’m on the 8th week now so just over a week to go. 

    Ememas don’t work for me and at first suppositories but but was short lived.

    I also have no stool infection. 

    I would definitely take the steroids. You will feel so much better. 

    Hope you are on the mend soon.

    I am also in the UK. xx

    • michelle34409
      michelle34409 carrie303

      Posted

      Thank you for your reply . My main concerns are the weight gain . I've just lost weight through diet and don't want to put it all back on again ( I've not list an ounce through all of this ) and also it may sound silly but I have booked a party at the beginning of January for my 40th and would hate to sit drinking juice and not be able to even have a drink whilst everyone else is partying .

    • carrie303
      carrie303 michelle34409

      Posted

      Honestly Michelle I know the feeling. 

      I’ve lost 5 stone and over the last few years of having steroids I’ve gained about a stone each time but then lost it again as soon as I’ve stopped. 

      Steroids stop the cramps and everything else. They really are magic. 

      If you keep doing excerise and don’t ever eat you shouldn’t gain too much. My problem is I like food so almost use it as an excuse to eat. 🤦???

      I’ll lose it again in January. I would rather not be ill personally but I do go though the same as you are at the beginning. 

      Hope you get it resolved. I yet to find a resolution other than steroids. Please let me know if you find one. Good luck and hope you are feeling well soon. xx

    • carrie303
      carrie303 michelle34409

      Posted

      While I remember Michelle, I most certainly haven’t and never have given up drinking  while on steroids and they have always worked for me. 🥂🍷 xx

    • michelle34409
      michelle34409 carrie303

      Posted

      Really ? I was led to believe you shouldn't drink with them . I'm not planning on drinking every night but would have a couple at Christmas and obviously on my birthday . What side effects did you get ? I've read so many horror stories

    • carrie303
      carrie303 michelle34409

      Posted

      Absolutely no horror stories to tell at all. I’ve been to a wedding, a weekend away and birthdays etc in the last 7 weeks. Ive has no problems at all. I asked the nurses if I could drink on them and wasn’t advised it wasn’t a problem. That’s with vodka or wine. I’ve never had any problems drinking on peednisolone. 

      Everyone is different but ive has no bad experiences nor have you friends with IBD on steroids.  The odd drink isn’t not going to have any bad effect.

      These people giving horror stories... I read all sorts before I had my last colonoscopy and it was not half as bad as I was expecting. I tend not to read up so much on new things and experience them myself then ask on the forum.  xx

    • michelle34409
      michelle34409 carrie303

      Posted

      Thank you so much . I think Dr Google can be a bad thing sometimes. I've not told my children exactly what's wrong with me because I'm worried they will Google it . All they know is I have some inflammation. Xx

  • pca
    pca michelle34409

    Posted

    Hi Michelle.

    How horrible for you. I do empathise.

    Like others who have posted, I would give the oral steroids a try and see how you get on. Hopefully a short-term treatment will put this flare-up where you want it - well and truly behind you and you can then get down to enjoying Christmas and your 40th birthday in the New Year.

    I hope and pray that you return to good health very soon.

    With thoughts, kindest regards and all good wishes,

    Peter A

     

     

  • ruari1
    ruari1 michelle34409

    Posted

    Maybe try a short course of Prednisalone leading up to January? I've had Prednisalone a few times and it does work wonders. I haven't noticed any weight gains  but I am not a big eater and enjoy daily exercise! It's well worth it to get your life back! Good luck! And maybe you can still enjoy a glass or two of champagne in January!

  • michelle34409
    michelle34409

    Posted

    Thank you all . I will speak to my nurse this afternoon and see what she says . I need to do something as I really can't go on like this .

    Thanks again

    • pca
      pca michelle34409

      Posted

      .Good luck with that, Michelle.

      I really hope you can get some real progress.

      All good wishes,

      Peter A xxx

       

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