Proctitis maintenance meds

Hello everyone,

I am new to the forum. I have ulcerative proctitis at the last five cm of the rectum (diagnosed in 2014). I started flaring after several years of remission in late Aug 2019. I began mesalamine enemas nightly in late September after failing with hydrocort enemas (seemed to make bleeding worse after several days). Symptoms became minimal after a couple of weeks. In fact, the worst of the flare was the first three or so days of it (multiple bms in the morning, blood and mucus, tenesmus, some urgency).

I’ve continued to use nightly enemas and have occasional blood in small amounts maybe once up to a few times per week. Other than that, not much in the way of symptoms. Average of two soft formed bm’s a day. I’ve tried to switch to every other night on more than one occasion and often more blood and a bit of mucus returns the morning after skipping a dose. I should also mention that I’ve never used prednisone or any other oral steroid (tried Cortifoam with some success but now it’s really hard to find and expensive) and would rather avoid them.

Questions: are some of you on mesalamine enemas indefinitely on a nightly basis? Is tapering impossible for some of us? Do oral medications have any efficacy for maintaining a state of remission?

Thanks in advance!

Hi Quincy,

I had a colonoscopy in August 2015. Diagnosed as idiopathic proctitis at the time. That’s the only one I’ve had. Doc has done a few CBCs since and they always come up with normal results. The PA I went to thinks the proctitis hasn’t changed based on those findings, though we can’t be 100% without a scope.

No constipation whatsoever. I do eat a high fiber vegan diet which produces a lot of stool and it passes easily, typically 2x a day. I’m pretty used to a mild burning sensation sometimes during and shortly after a bm that goes away quickly...I was diagnosed with mild hemorrhoids from the test.

I tried Canasa back in 2015 and had a hard time using it. It would melt and leak out. More recently, I haven’t used it due to the expense (it’s a “higher tier” drug). I do have about two weeks supply of hydrocort left over from September that I’m thinking of alternating with mesalamine for a few weeks. Kinda scared that it will make me worse but you never know til you try right? Also, when you saying “mixing” do you mean alternating meds or compounding them?

I just get the feeling the enemas are keeping me at a certain level of very low inflammation but aren’t knocking me into remission (luckily, no problems with side effects aside from lots of gas out of the back end!). Strange considering I used cortifoam inconsistently for a very short time in 2015, then abruptly quit and seemed to stay symptom-free for several years. But I’m now learning about the unpredictability of these diseases, and the particular persistence of rectal inflammation.

Post Edited (Guigsy) : 7/18/2020 3:35:07 PM (GMT-6)

No biopsies were taken. No mention of the cecum. The notes mention a normal ileum.

I’m using a 4g generic mesalamine enema. I’ve thought maybe getting a lower dose for maintenance might help with true remission somehow but I don’t know...I mentioned earlier about skipping a dose a few days ago. Took one last night and the difference is immediately noticeable. No noticeable blood and minimal mucus.

I will look into steroid supps... maybe alternating them with mesalamine enemas will do the trick (I should mention that I was put off by Canasa in the past as one of the side effects mentioned was induction of colitis which i thought was bizarre and worrying). I don’t know if there’s a shortage of cortifoam but it’s been hard to find and it’s a tier one drug so the insurance company has me bear a lot of the cost towards the deductible... 372$ for two weeks supply. I’ve also been considering Uceris foam as I noticed the manufacturer has a coupon that greatly reduces the price. Foam is just soooo much easier than anything else! Makes travel a hell of a lot easier. Hoping someday we get mesalamine foam in the states.

I feel like I’ve been 90% towards remission but can’t quite get over the hump. I do my best to not get frustrated because I know how much worse it can get. Gotta be grateful for the life I have.

Thanks for the line of questioning and advice! I suppose any condition that is chronic and idiopathic is a mystery to the medical community so it’s quite helpful to hear from people who have been through the experimental rigamarole of trying to treat and control it.

Post Edited (Guigsy) : 7/19/2020 3:26:14 PM (GMT-6)

Guigsy...at your hopefully within a year or so c-scope, push for biopsies throughout.

You aren't in remission, so treatment is your concern at this point. A combo of steroid and mesalamine topicals are good options. The phase you're in can be the most confusing and frustrating. Hang tough.

I don't believe that the medical community sees UC as a mystery. My doc over 31 years ago had no trouble explaining my symptoms as I asked questions relating to my symptoms. Treatment has been the same for as long, except once given steroid foam enemas while my doc was away on an emergency. Eventually, I was given carte blanche in keeping up with my use of rectals and tapering depending on symptoms. Doctors do have varying perspectives as do those living with it. Lots of med options..as well as surgery.
Canasa isnt a higher tier med...it's first-line non-steroid topical.

q