The Forgotten IBD

What is the forgotten IBD? It’s called Indeterminate Colitis. 10-15% of Inflammatory Bowel Disease patients are diagnosed with Indeterminate Colitis and I am one of those people. A diagnosis of Indeterminate Colitis is used when a diagnosis of Ulcerative Colitis or Crohn’s Disease cannot be made based on standard clinical testing which is why another positive diagnostic test is needed for Indeterminate Colitis. There is speculation in the GI field that Indeterminate Colitis is possibly another form of IBD.

Common Symptoms Include:

  • Constipation
  • Diarrhea
  • Abdominal Pain
  • Bloody Stools
  • Anemia
  • Rectal Bleeding
  • Fatigue

There have been studies done in the past where about 50% of patients with Indeterminate Colitis later received a diagnosis of Crohn’s Disease or Ulcerative Colitis. The other 50% remain with a diagnosis of Indeterminate Colitis. There are days I wonder if I’ll ever receive a diagnosis of Crohn’s Disease or Ulcerative Colitis. Or if I’ll just be in this in between state for the rest of my life. I’m not the only person who lives with wondering this. There are thousands of people who have Indeterminate Colitis and go through what I do every day.

Indeterminate Colitis needs more awareness raised for it. Currently, patients with Indeterminate Colitis cannot participate in the 23&Me study on IBD. For their list of reasons as to why they’re doing this please see my blog post about it.

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