Going off meds during remission
Sat, February 15, 2014 1:17 PM
Hi, I've achieved remission of proctitis with very lengthy use of Asacol tablets and Salo-Falk enemas. Over past year, I have pretty much been able to stop SF enemas, and have weaned myself to 3 Asacol 3 times a day.
My GI is very UNavailable, and he is virtually always triple booked downtown (3 hr treturn trip) and doesn't do phone calls so I'm kind of floundering on my own.
Althiough I was actually and definitely dx'd with some sort of then unidentified IBD in early 1990s (different province/state, very good GI) and given Asacol then.. I have successfully used it with flare ups, its only recently this GI finally dx'd UC.. My guess is years ago, mine was just starting as then unknown microscopic colitis, which a daughter now has.. Hers was the first I ever heard of it and Since it wasn't possibly known late '80s or very early 90’s that may have been why specialists couldn't then dx other than definitely IBD not IBS.
Question: Who of you have successfully stopped Asacol and treatment altogether during remission? Over the years it worked well for me and I am very reluctant to continue Asacol or SF as maintenanc esp since I am mostly unsupervised.
Now that I know about proctitis, My thinking is at first sign of episode starting, I will immediately go to treatment of Asacol, adding SF enemas is pills don't quickly stop symptons.
Looking for anyone who's gone this route of using meds only when flareup seems to be starting., is it effective, has your GI snactioned this? Any thoughts or tips?
Thanks, DR
drJoined Feb 15, 2014
Sun, February 16, 2014 8:12 PM
I'll tell you my story.... My crohn's (crohn's colitis - mostly in the colon) started when I was pregnant in '04.. After finally getting the right diagnosis, i was put on asacol and flagyll (for abcesses). Eventually my symptoms got better and i went off the asacol. Eventually, my symptoms came back (but i was in denial so it went on for some time). Eventually, I went back to the doctor - it might've been a couple of years that lapsed. I was then put on Humira. I was was nauseous all the time. My GI swore it wasn't the humira - oh you can't have a breakthrough on humira. After a year of that, I got irritated and stopped the shots without telling the doc. Well, then a year or so passed. I went to a new GI doctor who told me that this is a lifetime disease and you need to stay on your medicine. even when you feel better. A colonoscopy revealed 22 inches of diseased intestine - no longer just in my colon. So... the advice the doctor gave me the next time I get pissed at my doctor - fire him - don't stop your medicine. My irritation, frustration, stubborness led to more disease. now i'm on remicade (after trying others that made me sick) anyway... this isn't necessarily your story but maybe the bottom line of my story will help in some way. i strongly suggest that you not go off your meds without the supervision of your doctor.
lisamiddletonJoined Feb 1, 2014
Sun, February 16, 2014 12:36 PM
Reply posted for dr.
I can relate to the curiosity of feeling better and being tempted to discontinue meds. I've tried doing that when my daughter was dx w/cd @4. Once she was regulated and in "remission" I consulted her pedi gi and I was warned not to, but explained my feelings and let them know we are going to try this; feeling with her changed diet and fresh start she was feeling wonderful what do we have to lose?
I'm glad we tried, but Lizzie did end up back into a full fledge flair that took twice as long to get back under control. Based on my experience, I wouldn't recommend trying. Consider yourself lucky that you've been able to scale back on meds and achieve remission.
You may want to begin a search for a new gi one that is available / closer to home
Joined Sep 9, 2009