Pancolitis and 5ASA's - anyone take those w/Pancolitis?

I was on sulfasalazine then asacol and both greatly helped my Proctosigmoidits.  I went into a major flare after stopping them cold turkey, believing that is what caused my kidney disease.  I think now that perhaps the 5ASA's did not cause my kidney disease and that I had that before taking the 5ASA's. 

Just want to know if anyone w/pancolitis uses 5ASA's successfully?

I go away every year w/my girlfriends to the beach and have been doing that for the past 10 years and this year at the beach (this past weekend) while they were asking me about everything that was going on w/my health, I told them what I thought and a couple of them remember my ankles swelling up the summer prior to me being dx'd w/UC and taking the 5ASA's.  I kind of remember that too, I know the swelling was intermittent for a while, I know I went to the Dr's about it after my UC dx (just because I was dx'd right before my job I am at now and went to the Doc's about the swelling after I started my job). 

I am going to request a copy of my medical records to see if I ever brought it up in passing to any of my Doc's before and maybe they made notes?

What if my the MCD is not caused from me taking 5ASA's?  I don't want to end up getting surgery if it was all just a coincidence and also, i'd rather be on those than imuran and remicade.

Well I am going to get a 2nd opinion anyway, so I will bring this up, but if this was all just a coincidence I could just flip right the eff out.........but I kind of feel like I did the right thing by at least trying???

Hi Beth,

Sorry to hear that the 5ASAs could have potentially given you such a bad reaction!  I hope that it is not the cause for you.  I figured maybe I could at least go on record for you here that I do have pancolitis and I have been on Asacol for pretty much the entire run.  (I had a brief try with Sulfasalazine but was switched quickly due to sulfa allergy.)

Hope it helps you at the docs!  And I do agree that you did the right thing by at least trying to see if it was the 5ASAs that were giving you problems.  That is one of the most frustrating and exhausting things about this disease - playing guinea pig with yourself over meds and foods! 

Best of luck

thanks everyone for your responses, I know we are all different.

It is hope that keeps me going = )

I have been using Salofalk (5ASA) enema since I was dx with UC in July 2006. At that time only my rectum was inflammed. The enema helped me to go into remission after 3 months and I tapered off with it slowly to 1 in 5 days. Then I had a flare in November 2007 and was prescribed Salofalk tablets as well. But my UC has become more serious and I was put on Prednisone after 2 ER visits for diarrhea and dehydration in February 2008, meaning that the Salofalk tablets were not strong enough.
Colonoscopy in April confirmed that I have pancolitis. After tapering off completely from Prednisone (after 3 months), I am now taking Salofalk tablets and Azathioprine. I also use Salofalk enema every night.
I feel much better now, going 3-4 times a day with formed stools. I think my current medications and supplements all play a part.
Good luck to you and I wish you'd feel better soon.