Totally weened off Pentasa, when should I be worried?

"my bowel movements are often unfulfilling (always feel like there is more, minor constipation maybe?)"

That is rectal inflammation from UC and it can be felt as either constipation or as tenesmus (that constant feeling of having to poop but not going much or at all).

"when I wipe it is often really wet with traces of blood."

That is rectal inflammation from UC.

Yes, absolutely restart the Pentasa suppository as you are currently flaring and your UC inflammation is returning as a direct consequence of stopping your UC maintenance medications. The longer you wait the worse this flare will get, it will get exponentially worse the longer you wait until you are completely miserable. You are always best to catch a flare early when first seeing signs of it, which is what it sounds like you are experiencing now. You will likely need a maintenance medication like Pentasa Suppository on an ongoing basis. I would reach out to your gasteroenteroligist and tell him/her about your current symptoms asap.

Yeah, I agree with iPoop.....if you are having minor symptoms at this point, best to nip them in the bud before they escalate into something much harder to control.

My doctor has said the same thing though. She said she has seen such a vast difference in disease activity in her patients over the years that she refuses to use a "one sized fits all" method of treatment (and I am glad about that).

She even told me she has patients who've gone med-free successfully and at some point I can try it myself, but would like me to wait at least another 3 months symptom free first.

When (and if) I try it like you have......I'll go back on meds immediately on the first sight of a return of any symptoms though. I am always concerned that "easy to control" can become "hard to control" in a flash.....Good luck.

Thanks for all of the replies, confirming what I suspected really but nice to get other opinions.

I suppose I am unsure of how to self medicate in a sense as not sure best way to approach. Do I go back to suppository every day, then once things are back to normal skip a day or two between taking them until I see more symptoms?

No worries, all forms of Ulcerative Colitis and IBD are welcome here, we get regular posters with: Ulcerative Proctitis, Ulcerative Protosigmoiditis, Left-Sided UC, Pancolitis, as well as Indeterminate-Colitis, and Crohn's Colitis.

Our advice doesn't trump your doctor's advice. Any sustained change within your symptoms should result in you notifying your doctor. He/she may want you back on Pentasa Suppositories and/or Oral pills.

Generally speaking, daily Pentasa Suppositories sounds good as an ongoing maintenance dose for UP. As the inflammation is limited to the rectum, the suppositories go straight to that source, and it works well. Whether it is ultimately a twice daily, once daily, every other day, or so forth maintenance treatment, who knows! It really depends on what your UC needs to sustain a remission. Oral pills as a maintenance approach is sometimes used with UP, but I'd wager it is a whole lot less successful.

Pentasa is probably the safest UC drug when compared to immunosuppressants.....It's best to keep on it. Trust me, you don't want to go on any sort of immunosuppressant, prednisone is bad enough and that is only short term.

Just to note that it does take some time to see improvement with Pentasa. It's best to knock it down quick as it could spread further. I've heard of cases where it starts initially in the rectum and later when not controlled turning into pan colitis.