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Off meds in remission

Posted , 2 users are following.

Maddazza35
Maddazza35

Hello I'm a 35 year old male diagnosed with chrohns disease I have had only one swelling of the bowel since having the disease nearly 5 years ago might be slightly less. I was suffering from stomach cramps and constipation followed by diarrhea I was put on various drugs but the sickness spells got more frequent I felt sh*t all the time tired unwell the drug I was on was changed to pentasa and this didn't help again I felt rough and ill I told my doctor at the hospital that the meds were making me worse they did all the checks camera's etc still in remission so I took myself off my meds been off for about 9 to 12 months but I'm now getting stomach cramps constipationfollowed by diarrhea and feeling unwell more regularly but I'm still being told I'm in remission is this normal am I right to have stopped my meds they were talking about putting me on a medication that could cause blood cancer can't go out in sunlight etc for 2 YEAR the risks didn't seem worth it has anyone else experienced this ? . Am I right to stay off meds and get used to diarrhea and stomach cramps

0 likes, 3 replies

3 Replies

  • IndieHannah
    IndieHannah Maddazza35

    Posted

    Its so difficult to know what to do when the meds don't work for you.  I have always had problems with them and have been forced to look at alternatives.  I thought i'd mention the liquid diet as an option....Modulen IBD is a very clean and useful alternative to steroids and it can be really far more successful in bringing about and maintaining remission.  It is difficult....but it really does work.

    If nothing else, it can give your bowel a complete rest (and you) and then when you begin to re-intoduce food a dietician can help you and this may reveal any offending foods that make your symptoms worse.

    Its easier to take the meds if they work for you, but if they don't a liquid diet really is the next best thing.

    Hope it all works out for you

    • Maddazza35
      Maddazza35 IndieHannah

      Posted

      Thanks so much for your reply things esculated over last couple of days I have either got a bad case of flu or its my chrohns either way doctor took no chances insisted I go back on meds I'm now on 8 pentasa and 6 predonisolin steroid based tablets I hate the meds but pain was worse my body is adapting but it's been a rough two days
    • IndieHannah
      IndieHannah Maddazza35

      Posted

      I'm sorry to hear you've been/are so poorly. The drugs are there to help and I'm sure they'll make things easier for you once you've adjusted to them...... Crohn's is horrible to us and we have to do whatever we can to make it bearable.

      Good luck and I hope you feel better soon.

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