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Diagnosed for a year and still have no clue

Although I have been diagnosed for over a year now I still have no idea what to do during bad flare ups 🙁

When I have a flare up I seem to get abit blocked up and have a lot of frequent toilet trips with just blood and mucus. I have had a hospital visit Not long after being diagnosed due to abit of a blockage and had a bowel prep and iv steriods.

I’m having a flare up at the moment and have been put on another 8 week course of steroids as the other didn’t seem to work as it’s just got worse.
I spoke to my nurse before the weekend and she suggested laxatives over the weekend and failing that a hospital stay is Likely needed altho they have been avoiding this due to COVID. Basically I’m just a bit fed up and unsure when I should seek medical advice as times like tonight when I can’t phone my nurse but the bleeding is very heavy is it normal? Is it okay to wait till the next day? I just feel so un educated about it all still and never really get any answers when I ask.

  1. I'm sorry I have only just seen your post @fedup!

    I hope you are doing a little better now? I know it can totally overwhelming initially. Sometimes even for a number of years whilst we figure out what's normal for us! We often have people in the IBDSuperHeroes Facebook group say exactly the same thing, so you are NOT ALONE <3

    Have your team discussed a maintenance medication for you, or did you literally just have the steroids?

    - Sahara (team member)

    1. I need someone if they have had this problem. I was diagnosed with UC many year ago. My dr put me on Humira because nothing else would work. I took it a year stopped taking anything . I have been in remission since 2014 until now. In Dec 2020 started having cramps in my lower abdomen. No diarrhea no bleeding just lower back ache sometimes and cramps but not everyday. I went to my doctor he ordered a blood work up and a calprotectin test. Blood work great but my calprotectin test came back high levels of inflammation. Have a scope scheduled in Feb. Has anyone else just had few symptoms but high levels of inflammation in their intestines?

      1. Hey @Louisianalady,

        Apologies, I have only just seen your comment. Have you had your scope yet?

        IBD is so hard to define as everyone experiences things a little differently. I hope the scope sheds some light and you can start treatment before it progresses any more!

        - Sahara (team member)

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