Proctitis maintenance plan

I think using it nightly for 2 weeks is under-treating. I guess I would do it nightly for 2 weeks and see where things stand but many people use canasa nightly ongoing, so why can't you? I have been using canasa nightly for years... Is the rectal inflammation mild/moderate/severe? I am not sure about stopping Asacol. have you ever had inflammation beyond the rectum? If so, I don't think stopping Asacol is a great idea. Also, if your inflammation is more than mild, I would think perhaps an enema or steroid foam/suppository might be good to use in the AM along with the canasa in the evening. What are your symptoms like? I have had very bad symptoms from proctitis in the past.

Yes, my first scope had inflammation (moderate)only in the 25-50cm section of colon, rectum was clear (though no biopsy taken from rectum) second scope was inflammation only in rectum(0-15cm) and very mild. I've been diarrhea free for over two months now (except one day which was clearly food choice induced). My BMs are solid, sometimes I go 4-5 times a day though, usually once a week, but the other days are 0-3 times a day. I've seen some mucus(infrequent) and some pus(after a day with no pooping). Urgency is almost normal, though I'm still not comfortable testing the limits so I feel the urge and I go immediately....but I could likely hold it if I had to....I think... So, my symptoms are so mild compared to what I began with. I'm just worried about it coming back. My GI is 99% sure I have ibd, but is not willing to officially diagnose since he's not 100% sure and also no clear signs pointing to which one. He didnt do the first scope and was annoyed biopsies weren't taken from rectum even though it appeared good. I think if biopsies were taken at hat first one we'd know if it was UC or crohns. Anyway, I agree with you guys that it was the asacol that treated the upper inflammation. I don't want to go off asacol and have it come back. I'm currently tapered down to 2 pills/day and have been holding there for about 6 weeks with no backsliding. Do you think I should hold at two...or test it out and go to 1 pill per day for 6 weeks or more to test it out?

I have proctitis. My GI said no meds unless blood and or urgency.. Listening to those here I knew not to stop completely so I reduced to every second night and then every third.. My symptoms came back. My maintenance dose it a 1g pentasa enema every night. Never had inflammation higher than rectum.

No always the same.. Just start using pentasa again.. I was on off for two years before I was told it was a chronic illness.

Getting a diagnosis really helps but I really disagree with your doctor for not wanting to treat until he has an exact diagnosis. This is an obvious black and white issue - you had inflammation, the Asacol got rid of it, your doc thinks it's a 99% chance you have IBD and he wants you to stop the Asacol? That's crazy. Definitely do not go any less than two pills per day and stay on that forever, unless you have to increase it due to symptoms returning. Most everyone is really, really sorry for stopping meds and then finding out the inflammation has come back and what worked for you before won't work again and then you're talking about Imuran, Remicade, Humira, Simponi, or whatever. You don't want to go in that direction voluntarily by stopping what's working. Same thing with the Proctitus. I've been taking Canasa suppositories every night for a couple of months and plan to soon go to every other night for a while. It would probably be a mistake to taper off them completely, even if you only do it once per week at some point. I'd really hate to see you stop the Asacol and then a few months down the road you wind up posting asking questions about Humira.

toomuch - I think you are spot on with staying on the Asacol. You know whats up.

Staying on your maintenance dose while you wait for a 100% dx would be smarter than chancing it... fo sho. Though I agree with the idea that it worked on the upper inflammation and you will need it for life. Aren't you so darn glad to have this website!? lol.

As for rectals... I don't know anything. But agree with NSSG that 2 weeks of supps then taper? Ehh... I'd hold off on the taper until things seem pretty much 100%. Then every other as maintenance...

If you can afford the meds and you've seen improvement... I suggest not messing that up.
You know your body best. I think you are spot on with this post :)

My dr has always told me that UC is a chronic disease, and you can always be in flare with no symptoms...for years. Since the chance for cancer goes up 10% for every 10 years of chronic inflammation, and you can have it and not know, I will be taking these meds for the rest of my life. I have felt just perfect and my biopsies have come back saying chronic inflammation in them....just so you know, you will always have them saying that, no matter how good you feel....you will ALWAYS have some chronic inflammation in the cell walls of your colon that needs to be taken care of in some way.

I'm happy with this, and I have had it for almost 40 years, and every scope I get is perfectly, 100% NORMAL from any hyperplasia or cancer, and I have no polyps.....so, I will always be taking these meds.