Petah said...
That's great, and even better news for me, I have proctitis. :) thanks for sharing
I thought I should add something. As someone with 10-15cm proctitis, I'd always been confused by how that small an area of inflammation was causing so much trouble. I can see why it would cause urgency - if that area is essentially slick with mucous and blood then it's not going to do it's job retaining stool I guess. Makes sense.
What I didn't get was why it would cause frequency, and so I'd been ascribing frequency to something else (food intolerances, IBS or some combination). But that was wrong.
When I had the flex sig last week it was clear that something, with the butyrate suppositories being the most likely suspect, was making healing happen - for the first time for a while with the exception of a few weeks into prednisone - I could see the pictures and where my colonoscopy a few months ago looked uniformly red and raw in that area, now it looked normal with the exception of one obvious individual ulcer and a much smaller inflamed area. So you didn't have to be an expert to see it was much better.
But - my symptoms (urgency and frequency) are still there - improved, but definitely not gone away. And that's why I had been about
to stop the butyrate until the flex sig was done.
So I asked why would such minimal inflammation cause such pronounced symptoms. I guess you may all know why already, but it was news to me. Even minimal inflammation and inflammation in the rectum is interpreted by the bowel as something which needs to be expelled. So that small ulcerated area it provokes my bowel to try to empty out in order to get rid of what's there - even though what's there is in fact just the inflamed tissue.
Bottom line (pardon the pun) is that, for me at least, I'll still have symptoms until the inflammation is gone, and that may take a little while - I have been in a continuous low-level flare to varying degrees since 2007, so I shouldn't expect things to happen overnight. But I can't take continuing symptoms to mean that healing isn't happening when it visibly is.
Just thought I'd share that, as it's important for me - it means that I can't necessarily tell if something is working or not purely on the basis of the severity of my symptoms. I know I've tried a lot of things and then given up when symptoms didn't improve. I was going to do the same with the butyrate enemas as the symptoms weren't going away. But that would have been a mistake.
Incidentally, I realise it's possible that the use of the butyrate suppositories may just be coinciding with me going into remission anyway. The thing is, I haven't been in remission since 2007. Maybe the butyrate won't get me all the way. But it would be odd to have the best exam since diagnosis coincide with starting them. Could be though of course.