Normal calprotectin levels but bad symptoms

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Hi all,

I was diagnosed with UC about 10 years ago. I had a big flare and my whole bowel was inflamed. About a year before I was diagnosed with depression and anxiety for which I take an antidepressant.

I was prescribed steroids for the immediate problem and then 6MP and mezavant for maintenance. I have been taking the same drugs for about 10 years without any issues.

About four years ago I had minor symptoms and a colonoscopy showed I had proctitis but the rest of the bowel was fine.

Over a year ago I was taken off the 6MP as I was doing well. However, since then I have noticed a decline in my bowel symptoms and mental health. I get urgency which is accompanied by feelings of wobbly legs and internal restlessness / shaking. Once I have been to the bathroom these symptoms are relieved. This happens several times a day. If I put light pressure on my bowel it hurts.

My gastro has checked my calprotectin levels a few times over the last year and they have come back as normal so they say it is just IBS and I should drink peppermint tea!

Has anyone else experienced this or similar issues? Normal calprotectin levels but still having active disease? Urgency accompanied by feelings of wobbly legs and restlessness?

Many thanks in advance,

Ed

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Thanks for your help!

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