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Any advice about post-steroid treatment?

I have recently been diagnosed with Ulcerative colitis, having lost 4 stones in weight in 8 months and having debilitating diarrhoea of up to 12 times, day or night, I had to sleep in the sitting room so I didn't disturb people with my constant dashes to the loo in the night. I have been given 5mg prednisolone tablets on a weekly reducing dose, along with 3 tablets daily of Mesalazine. These have literally changed my life but I am so afraid that once I stop taking the steroids, will I go back to how I was. Any advice about "post steroid" treatment.

  1. Hi . Glad to hear that treatment has improved your symptoms. Your concerns are understandable, but I want to point out that there are more treatments for IBD then ever. This article gives an overview of the various medication options: https://inflammatoryboweldisease.net/treatment/medications. Mesalazine is a type of aminosalicylate and these successfully help many with IBD and, as previously noted, there are options should symptoms recur.
    Getting an ulcerative colitis diagnosis can be scary, but it is also the first step in making things better. Our patient leaders have written a number of articles with advice for the newly diagnosed (a quick search at top left on the term will yield many) and I want to share with you this article from our editorial team which compiled thoughts for the newly diagnosed: https://inflammatoryboweldisease.net/living/advice-newly-diagnosed.
    Hopefully others will also chime in with some thoughts. Please know that this community is here for you. Best, Richard (Team Member)

    1. Hello! I have been on and off steroids for the last 5 years, and I totally get what you are saying. The uncertainty is scary. Something that helped me is knowing that even if it is just the steroids helping, it's nice to feel good for a little while. I am hopeful that you will find a medicine that is right for you!

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