Posted 2/7/2008 1:26 PM (GMT -6)
this is my first posting, so please bear with me. I had my first flare 5/06, lasted couple of days, didn't see doc, thought it was hemorrhoids. Next flare, 10/06, lasted 2 wks. Family doc sent me to gastro, by that time the bleeding & mucus had stopped so when I had colonoscopy 11/06, gastro only saw small area that looked healed in rectum. He said I had proctitus. Then, 1/07, big new flare. Gastro put me on cortiform (enema) for 6/wks w/ no results. Next 25mg hydrocortisone acetate (hemorrhoid suppositories) 4/wks w/ no results. Tried Prednisone for about 6/wks, no results (oh, I did grow a pumpkin head). Next tried Rowasa (mesalamine emema) 4/wks, no results. Gastro couldn't figure out why nothing was helping (he probably thought I was a nut). 7/07 he did a proctosigmoidoscopy (flexiscope?) in his office. I was full of ulcers as far as he could see, only about 12/inches, that was all the pain I could take. At that point he diagnosed me with ulcerative colitis. 8/07 started Lialda (mesalamine oral) 4 1.2g tabs in am.(check kidneys every 6/mos) Within about a month noticed decrease in blood, mucus and afternoon trips to toilet. I do NOT have pain, constipation, or diarrhea but my stools are soft (ribbons) and sometimes fall apart in the toilet and are always laced with blood & mucus. (thats not to say i never have had stomach pains, since the time i was about 10, (48now) about once a year i have such a bad stomach ache that i would faint, then start vomiting, and follow with diarrhea and nausea. I have mentioned to docs, they never seemed concerned about it-maybe too much of a good thing!) In the meantime, since about the time I started the Lialda, I noticed lots of pain and stiffness in my hands and feet especially in the am. other occasional stiffness in hips/waist, neck throughout the day. Told gastro, he said not the Lialda. Told family doc, she sent me to rheumatologist. Rheumy did lots of bloodwork: ANA-positive (expected because of UC), Vit. D - low 19.5, leukopenia - low 1.0 (or 1000), and SM/RNP -positive (marker for lupus). Started 50,000u Vit D once a week for 6/wks, now 1000 day. Rheumy also started me on Placquenil now because looks to be lupus and takes 2-3/mos to start working(had to see eye doc before starting & every 6/mos thereafter). Rheumy did say sometimes UC causes other aches & pains. Rheumy will repeat bloodwork 3/08 to confirm lupus. (I eat regular diet, walk 1-2miles per day-not easy, I stress over everything-type A, achy, tired, don't sleep well-use lunesta, most have no idea because I am truly happy and put on a happy face). So, 2008 hit and I've been bleeding for over 1 year. Called gastro, asked if I should try prednisone(again) on top of the Lialda, he said no (rather his nurse did, she just relayed the msg). I have appt in may. My big questions: Are there others out there that have flares that last this long? What is happening to my intestines, are they falling apart??? Am I on my way to getting a fistula or something else? Would I know right away if I had one? Is it okay for my gastro to think it is okay to keep bleeding???