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New UC diagnosis at 43 but misdiagnosed since 18yrs old. Looking for advice

This has plagued me and ruined pretty much every aspect of my life. Had a severe flare up since March 2020. Due to covid couldn't get the attention I needed until now with an emergency colonoscopy due to bleeding. Been on prednisone 40mg for a few months. I have prolitis (sp) UC. My major component now I'm dealing with is urgency. Its uncontrollable and threatening my ability to go to work. Its really a scary time now. I'm taking suppositories/prednisone/Viberzi now. Things have calmed a bit but the inflammation in the anus will not subside. I'm tapering off prednisone and will soon be on remicade in a month. I was wondering if anyone had any experiences or expectations on what is going on with dealing/helping with the urgency aspect.

  1. My heart goes out to you. Urgency is so horrible to deal with. The anxiety that comes along is crippling. Honestly, it wasn't until I finally found a proper medication that the urgency subsided and that took years. In the meantime to cope, I would wear a feminine pad 24/7 so that I had a barrier of protection. And that became my new normal. It really helps keep you at ease knowing that you have some protection. Maybe something to try? I hope you get relief from this soon and I'm really sorry you are going through this. Big hugs, Elizabeth (team member)

    1. how are you doing now?
      ~ Sahara (Team member)

      1. Unfortunately in the same predicament but my remicade infusions start this wednesday. Really anxious about sitting for hours with my stomach still in this bad of shape. Thank you for touching base.

      2. I hope your infusion goes smoothly! I must admit, I ended up having to drag the drip to the loo with me a few times during all of my infusions! Lol. I really hope it helps you.
        As Elizabeth said above, I tended to go with precautions all of the time. Wearing a pad, spare underwear etc.
        I assume it's the disease being active that's causing the issue, so hopefully, it will calm down soon with the help of Remicade! Sometimes, it can be more of a "mechanical" issue, and if that turns out to be the case, certain physio exercises can be done to improve this. In the UK, it's called biofeedback. Not sure if it's the same in the US.
        ~ Sahara (team member)

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