Confusion about proctitis diagnosis.
Hello forum, I'm still on the journey towards a diagnosis. I've been in and out of flares for the past 3 years.
I had a colonoscopy in June 2023; I was diagnosed with 'possible proctitis' and signed off with 'no clinical action needed.'
Since this diagnosis I have had 2 pretty severe flares, my symptoms lasting for months at a time - blood and mucus in stool, urgency, diarrhoea, abdominal pain, fatigue. My GP has been unable to refer me for further testing.
I recently paid to see a gastroenterologist privately (I was so desperate) and she has suggested a second scope and a small bowel MRI - she said the first scope could not get into my ileum (where much of my pain seems to be.) However, I wasn't told this at the time.
The consultant was very helpful but I still feel quite confused about what to do next.
Having read up a bit on proctitis since my first scope, I am confused about whether proctitis is a type of IBD and if I should have been offered some treatment or further tests after this result.
I'm also quite concerned that when I had my first scope I wasn't in a flare-up and didn't get a diagnosis. I am currently in remission and worry that if I have another scope whilst in remission the problem may be missed again.
Any advice/information about what a proctitis diagnosis means and whether being in a flare increases the chances of a diagnosis would be hugely appreciated. Thank you.
Hi
. Your confusion and frustration are certainly understandable. First, I want to note that as stated in this article "Proctitis may be part of inflammatory bowel disease (IBD). Ulcerative colitis and Crohn's disease are common types of IBD that may cause proctitis. Proctitis in IBD is chronic, and it is the most common type of proctitis:" https://www.niddk.nih.gov/health-information/digestive-diseases/proctitis/definition-facts. I also want to share with you this article from our editorial team with an overview of the IBD diagnostic process: https://inflammatoryboweldisease.net/diagnosis. Hopefully the doctor will focus on looking for IBD in general and not just proctitis (the recommended tests sound more comprehensive). One of the things I will note is the need for a biopsy to look for IBD, but that it will not always tell the whole story (see: https://inflammatoryboweldisease.net/living/diagnosis-missed-colonoscopy). I hope this information can inform further conversations with your doctor and the tests and methods discussed should enable a diagnosis even without a flare. Also hoping you get some answers soon. Wishing you the best and please feel free to keep us posted on how you are doing. Richard (Team Member)
