IBD symptoms with no diagnosis: I was just... - IBS Network

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IBD symptoms with no diagnosis

JQLA profile image
JQLA
2 Replies

I was just diagnosed with IBS 6 months ago, before my 40th birthday. It started with persistent constipation, bloating and cramping that led to a colonoscopy. Since my mother has Crohn's, I expected the same diagnoses, but instead I got an all clear from the GI doctors. The months that followed put my life at a stand still. Worsened constipation, severe lethargy, heart palpitations. All barely managed with the most restrictive diets.

In the last few weeks my symptoms have turned into severe pain with both stabbing and burning sensations on the right and left side of my colon, along with a complete shut down of bowel motility (no sensation to go at all, just pain and pressure). I took a colon prep amount of Miralax last week with no movement at all. I had to press into my abdomen to squeeze out the fluid that had built up. This also produced a long strand of what looked like my intestines in the toilet. My research suggests this was likely a "rope worm" or mucus lining that sheds from severe inflammation, commonly seen in IBD. I knew for sure now that my IBS had turned into IBD, or at least some form of colitis. I just had a CT scan done last night and the results show "no visible sign of bowel inflammation." This is shocking because I'm in real pain now and experiencing similar symptoms as folks with UC or Crohn's.

I wonder if anyone else has severe, IBD type symptoms/inflammation with just an IBS diagnosis. I've never really heard anyone talk about this, so I'm unsure if it's common. I'm fearful that I may need the type of anti-inflammatory treatment they give to Crohn's and UC patients, but I can't get it when the inflammation is not visible. I don't want to wait until I have a perforation before they finally decide to treat the problem. I have no idea where to go from here.

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JQLA
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Viklou profile image
Viklou

Have you had any of you stool samples come back with high inflammation markers. They test fecal calprotectin anything over 200 is suspected IBD

Linley profile image
Linley

Did your Gastro test for microscopic colitis?

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