How do you know if proctitis has spread?

New to this forum, but I was diagnosed with ulcerative proctitis back in August 2015. Symptoms were bleeding and mucus. No pain, no urgency, no D or C. Have never really achieved remission for longer than a few weeks, but the intermittent bleeding/mucus didn't affect my quality of life. Have been taking 1 Canasa suppository at night at 2 Lialda pills in the morning.

In early August, I started experiencing new symptoms, including cramping, urgency, and bloating. They have progressively gotten worse over the past few months. Still pretty mild, but I am worried that this means the disease is spreading and will continue to spread.

Does anyone have any insight into disease progression and quality of life?

Post Edited (UC_PhD) : 10/2/2018 9:08:53 PM (GMT-6)

Really endoscopy is the only true way to see if your UC has spread.

With UC you're talking two things: extent and severity.

You could've had mild proctitis flares up to this point, and are now having a moderate to severe proctitis flare and that could explain it entirely (nothing has spread, rather the severity is worse within the same area). The more severe the inflammation the more severe the symptoms, even when it's confined to a small or limited space like your rectum.

You could have had disease progression to a greater extent. Sometimes there are clues.
1.) The color of blood is one of them. Proctitis bleeding is very bright red in color. Bleeding from further up the left side (sigmoid colon or beyond) is darker red in color, it is like red-wine coloration.
2.) Some veterans claim they can feel pains from different areas when flaring, transverse vs ascending vs descending colon. Not sure on that one.

It's pretty individual. Some people have mild cases and their quality of life isn't impacted dramatically. For me, once it progressed, mine was severe and regardless of whether I was dealing with proctitis or pancolitis, it was usually quite difficult to function normally. In the early stage of UC, I had proctitis and it was mild and easy to live with, but the moment it progressed, things became unbearable quickly - and it progressed over the course of a year or less I'd imagine. Initially, I went to the doctor, I was diagnosed with proctitis, the extent was very minimal. I treated with suppositories and things were controlled. A few months later, symptoms returned and much worse than before. The suppositories didn't do much, if anything, to control it. Before you know it, it wasn't just blood, it was urgency, frequency, tenesmus, cramps nocturnal BMs... I got a scope, the scope showed pancolitis at that point.

You would need a scope to know for sure, but just because you get scoped doesn't mean you will gather all of the details. It depends on the extent and severity of the inflammation at the time of the scope. Meds can also cause skipped areas, & of course, if you're in remission, the scope might not provide any details at all, but it sounds like you're having symptoms, & something will be seen.

have you consulted your GI about going up to 4 Lialda? That might be the answer, but yes, when you start adding meds, you do wonder why you're requiring more to keep the condition under control.

Sounds like a good plan. Good luck, let us know how it goes after a few weeks. Hoping you'll be feeling better by then