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Confusion about UC symptoms and flare ups.

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Ulcerative Colitis
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Posted 12/2/2018 12:31 PM (GMT -5)
I'm a bit confused about what a flare up is, and what the dangers of leaving them untreated are.

I was diagnosed with mild proctitis about 6 months ago after having a spate of very bloody faces and fatigue around 12 months ago (but no other severe symptoms). Since diagnosis blood and mucous have come and gone, and when I have them I've been told to take 1g pentasa suppositories until a week after the symtoms improve.

I'm a bit confused though:
a) my stools are always a little bit slimy, even when no blood or white mucous is present. However, I have no other severe symptoms (pain, severe urgency, more bowel movements than usual, etc.). Does this still count as a flare?

b) if what I have does count as a flare, and I do not take the pentasa, does this increase the risk of the UC progressing.

c) more generally, does the UC progress as a result of flares, or is progression an unrelated (or more complexly related) process.

My main anxiety is that I am not taking pentasa because my only symtpon is slimy stool, and doing so is risking progression.

Thanks for any help, and sorry if I am asking familiar questions - I haven't been able to find the answers despite searching.
Posted 12/2/2018 12:53 PM (GMT -5)
Unfortunately, a lot of your questions are difficult to answer and probably somewhat subjective depending on who you ask.

For (a) If you really want to know where things stand, you would need a scope. There is also a stool test called calprotectin, not as accurate as scope, but can indicate inflammation in stool, and the results coincide with inflammation in your colon. It is possible that you're being nervous in seeing it is "slimy". It's really hard to tell since the symptoms are so vague and mild. As people with a bowel illness, we are generally worried and quick to think something is wrong.

Were you diagnosed with a colonoscopy and biopsies? Procitits is not Ulcerative Colitis or Ulcerative Proctitis. Have you had stool tests? Have you tried antibiotics? Proctitis isn't necessarily chronic. There is a good chance that it may not progress to UP/UC. Mine did, but they say it's relatively low odds. If you have proctitis, any ulcerative colitis information, will likely be quite inaccurate.

I think you should make a follow up appointment and ask your questions, but also go over that pathology report, and see what it says. Ask if they've ruled out bacterial/pathogenic causes...
Posted 12/2/2018 2:02 PM (GMT -5)
Thanks very much. I wasn't aware of these distinctions. I have an appointment later this week, so very useful to know about them now!

I was diagnosed by colonoscopy and biopsy, and had stool tests before the procedure. I was told that I have indeterminate colitis (which the consultant referred to interchangeably as mild UC and, because it's only in the last 10cm of my colon, proctitis).

I havent had antibiotics, so will check that too. I appreciate the point about anxiety and perception of symptoms, but am pretty sure that this slimy stool is a fairly new thing (and that it followed having large amounts white mucous).
Posted 12/2/2018 4:41 PM (GMT -5)
My UC spread from 14 cms to 46 cms when I was under-treated and flaring. Please take your canasa as prescribed. Some of us do progress over time to a larger extent of active disease and more severe disease.
Posted 12/2/2018 6:07 PM (GMT -5)
if they said similar to mild UC, then you likely were diagnosed with IBD. Double check to make sure you do not have simple colitis/proctitis.

Patients tent to count symptoms as flares. The medical community counts inflammation as a flare - with or without symptoms. THis mean there is often miscommunication. Some GI consider you in remission when the inflammation is gone, and think you should see another doctor about any persisting symptoms. Mostly this is old school, and more emphasis on treating symptoms as well as inflammation is becoming the norm.

If you have untreated inflammation, it does raise your risk of progression, as well as increase the chances of colon cancer. But the absolute increase is still small. If the meds agree with you, being on some maintenance dose makes sense. IF you get symptoms form the meds, then you have to figure cost/benefit of living with some untreated inflammation.

you might do OK with adding some anti-inflammatory foods and treating flares quickly.

good luck
Posted 12/3/2018 5:51 AM (GMT -5)
I was diagnosed with ulcerative proctitis and a few years later was screwed around by a doctor who mistreated me, and so I went from mild ulcerative proctitis to ulcerative pancolitis within two months. Ulcerative Pancolitis is the whole colon. All of my flares after that were also pancolitis. It happens.
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