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Does anybody know if we are doing these enamas for life now

Posted , 4 users are following.

barbara80658
barbara80658

I am scared of coming off enamas in case it all starts again.when people say they are having a flare  have they come off there enamas.

1 like, 13 replies

13 Replies

  • Metaxa
    Metaxa barbara80658

    Posted

    Hi Barbara

    You have raised a valid point here and I didn't even think about it.

    I am on a low volume foam based one at the moment and it has made me feel so much better.

    Symptoms are mild now and no more sore lower half. I am on them as far as I know for some time but I don't know what will happen when I come off them. Or for how long I am on them. I am worried the symptoms will return.sad

    This is definitely a very good question to ask my GP when I phone him this week.

  • ann69548
    ann69548 barbara80658

    Posted

    Hi Barbara,I have found I am ok when stopping the enemas you should really only have them with a flare up,once the flare up has gone you should be ok,
    • barbara80658
      barbara80658 ann69548

      Posted

      Hi Ann. My consultant said its for life.I went on my first. months wort,h besause he said go on this for a month then you will be better . So I thought better forever.thats what he lead me to believe.Then after 1week it started again all the blood when I went to the toilet Loads of it as I am on wharfarin.You don't know what to do .do you,?for the best .If I come off the foam Iwill be worried all the time that I may start again.Wich foam are you on I am on I am on pred isalone its a steroid. which worries me also. 

       

    • ann69548
      ann69548 barbara80658

      Posted

      Hello again Barbara,I use Colifoam I believe they all have a small steroid in them as steroid. Is good for this condition,I have never been told to stay on them only until flare up ends,if they are not really helping then maybe go back to your consultant,it's a horrid disease and no one unless they have it know what we go through.good luck all the best Ann x
    • barbara80658
      barbara80658 ann69548

      Posted

      Thankyou Ann . I  didnt know that . I just yhought it was for life .I may come off now  untill I have a flare up . what do you think? I havnt seen any blood now for a while.

       

    • ann69548
      ann69548 barbara80658

      Posted

      Hi Barbara yes I would certainly come of them now,keep them by for when you get another flare up,I only use them if the bleeding is bad, Ann x
  • Metaxa
    Metaxa barbara80658

    Posted

    Hi Ann

    Happy New Year to you and to Barbara too.

    Rang GP he agrees with you, I am on a short quick dose of Colifoam for a fortnight. First week bliss no problem got through Xmascheesygrin my happy face here.

    However am now tapering dose to once a day (GP advice) I am not sure now and am rather confused nowconfused symptoms have started to come back. All I had was toast and within half an hour back on loo again several times. Am completing course obviously but I am rather peeved it's returned. Also had my buttock pain thing and pain in the bottom came back too.

    What do you think Ann does it mean it will return or will the few days left calm it down?

    Thanks for your help so far.

    • barbara80658
      barbara80658 Metaxa

      Posted

      Thanks Metaxa.My symptoms have come back. blood again .been on prednisolone now for 1 week . and not feeling too well. tired all the time.But must persevere.The change to your system. must do something!!

       

    • ann69548
      ann69548 Metaxa

      Posted

      Hi I think if your symptoms are still there after you come of enemas maybe you need to go on steroids orally for a while,it's often trial and error with thus horrid thing.all the best.  X
  • Metaxa
    Metaxa barbara80658

    Posted

    Hi thanks Ann for the advice.

    I have a calprotectin test to do in due course so will see what happens when I come off the steriods as am on last couple of days now.

    Barbara we will persevere, I hope things go well for you both and a nice period of remission happens to both of you.

    Good luck x

    • barbara80658
      barbara80658 Metaxa

      Posted

      Thanks Metaxa..been feeling quite ill now for a week . prednisolone dosn't ssuit me, will have to ask doctor if I can go back on salofalk. rather go bald than feel ill all the time.We will persevere.

       

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