went off my meds

I'm glad to hear that you are feeling much better after going off them... curious though, what meds were you on? Have you talked with your doctor about your questions? Maybe if you talked with him he can maybe run some tests on you to make sure everything is fine and maybe change the diagnosis.

I've noticed in the past that some of my medications made me go backwards and so I just went off them and I bounced back like it was nothing and was fine the next day.

Research has shown that maintenance meds keep inflammation down. Inflammation is believed to lead to cell changes which becomes colon cancer. I think most GIs would tell you that the best way to reduce your chance of developing colon cancer is to take your maintenance meds to keep inflammation at bay.

Sue

Unfortunately UC doesn't go away permanently. Take your meds, you don't want another flare. If you must cut back on your maintenance meds then at least try watching your diet very closely to see if certain foods trigger symptoms. Some supplements like turmeric (cook with curry) and probiotics can help with remission with the advantage of fewer side effects.

equinepeace said...
You mentioned that your last flare was after you had your baby. Do you think your flares were hormonal related. I am 50 and just had my first real bad flare and my GI asked if I had started menopause. He said flares can be triggered by hormonal changes.

yeah maybe because before i had my baby i was fine than 2 weeks after i had her i ended up in hosp bad flare now i feel like i did before i had m y baby its werid

Try it....our experience says differently.

I went off meds for a while unsuccessfully. I've since learned the value of medications for treatment and maintenance. As well...for the (as per mentioned by suebear) cancer protection in the long-run.

The reason YOU need to try it is because you actually believe you don't have UC. Testing the diagnosis is just a form of denial/extreme optimism.

Your every 2 days bms tells me possible mild rectal inflammation is already happening....but you might not have obvious symptoms until the inflammation increases. Not all of us have immediate symptoms to match the actual inflammation.

If you get more constipated, mucus, some rectal discomfort upon bms and urgency...please reconsider not waiting any longer and ask the doc for RECTAL meds such as Rowasa...and get back on the Colazal.

In the meantime, make sure you are taking probiotics and some fibre supplements.

Keep us posted.

q

I know exactly how you feel.

First flare up:  I was diagnosed in 1991, flared a few months, was on some drug study involving enemas(i do not know which one)I went into remission and that was that.  I went on my merry way.  I do not recall even being prescribed any maintenance meds, and I certainly didnt do anything different, not even any follow up with the gi dr.  There was no internet back then that you could look stuff up either. I was 23, in grad school, glad i felt better, and extremely busy.  I  felt fine, normal, regular, and was in remission for 10 years.

Second Flare up:  started on asacol and rectal meds, flare nicely resolved in a few months, back to remission.  This time I was supposed to take Asacol daily as a maintenence drug.  I felt good, so at some point, I said to myself, why bother taking these I feel fine?  And I stopped.  I was in remission for 5 years this time

Third flare up- got scolded by gi for going off meds, restarted on asacol and rectals, flare resolved nicely within a couple months, was supposed to continue on the asacol as a maintenence.  Well, I guess I got cocky, tempted fate, I was very inconsistant with the asacol, and stopped taking it altogether after like a year or so, I felt fine, why bother?  I was in remission this time for almost 2 years.

Fourth flare up(2008-until now):  This flare is lasting 2 years now.  I was put on Lialda and rectals, rowasa at night, canasa during the day, helped somewhat but I was still flaring, tried pred for the first time, but once I went off it completely, still bleeding.  Frustrated, found this site, started trying different stuff that others have tried, had to eliminate foods (my beloved coffee was  killing me), learned so much.   right now I am at about 95%.  I will never ever go off my oral meds again.  I do hope to stop the rectal stuff at some point.  I know some here use it as a maintenence, so I have not ruled out doing that as well, I know that I have not been able to completely go off the rectals after 2 years though.

I know that was a long story- but my point is:  YOUR UC WILL NOT EVER GO AWAY, THERE IS NO CURE UNLESS THROUGH SURGERY.  You can go into remission, for sure, but its coming back, someday.

we are more at risk for colon cancer.  the mesalamine can help protect against that. and the mesalamine can prevent another inflammation. I read another post here, where the person said they felt  great, but that their colonoscopy showed patchy ulcers in the colon.  So you can feel great, but inside there is something else going on.  Once you go into a flare, they can be hard to get out of.  I shudder to think of the damage this recent flare has done to my body.   To me, the easiest thing in the world to do is to swallow  a couple of stupid little pills to ward off inflammation and cancer.  Its so friggin easy, I would be an idiot not to do it! Maybe your doc can prescribe the lowest possible maintenence dose? 

of course, Im not sure anybody could have told me what to do until this fourth 2 year flare, it took all this for me to learn my lesson!!