I'm retired, thus I can rest when tired due to my UC. But last Feb 07, I served on Jury eight hrs/day for five days, and could not rest or relax. (I was on Asacol 6/day since 2005) Within month of serving on jury, I was very sick with flu-like symptoms, bedridden, low grade fever <101. My GP gave me antibiotic IM and 60mg Pred for six days. With no improvement, he put me on 20mg pred, cipro, and flagyl and referred me to my GI. My stool culture was neg.
GI did scope, hospitalization for four days in Apr 07 and continued pred w/o the antibiotics. He did increase my Pred to 30 mg. I continued to stay in flare, and in fact got worse; and in July I was placed on Imuran with bad reaction. I found a new GI in a new city and in Oct 07 I was hospitalized for 11 days for c.diff. and rehydration, colon rest, reduction of pred. from 30 to 15 mg.
GI wants me off Pred. with my encouragement and approval. I am also on Asacol 12 /day. I take fish oil, CA, MV. I see my GI again in 3 weeks.
Current symptoms: I have now been able to taper the Pred to 2.5 mg and feel terrible with body aches, no fever, very tired and limp, return of asthma using albuterol. Stools are liquid (I think they are like grits but dissolve in toilet water), urgency, incontinence, diarrhea no constipation, blood every day but very small amt, I go to john around the clock thus sleep is restless, I have 10-15 stools in 24 hr period. I also have nausea and periodic loss of appetite. My husband is so supportive and helps me - never complains. I am so thankful for him. Anyway, I have to take Tylenol 1000mg every 6 hrs to relieve my flu-like symptoms, just to get through every day. I also take chlorotrimeton (OTC) for sinus drainage and Imodium 8/day - I don't think it is working so I have decided not to take imodium anymore.
I think I will probably have to have colon removed and I am resolved to this, but I do want to get off the prednisone first. Tomorrow I will take 3 mg instead of the 2.5, and I will feel so much better! Why didn't the doctors tell me it would be so hard to get off this stuff? Or could these symptoms be UC??
Questions: I have read that some people take enemas and suppositories. Would this help in my situation? I don't know. My life is so wrapped up with my colon, I can't think straight. Right before I went to hosp in Oct (I did not know I had c.diff until I was hosp - what a surprise for everybody), I called all my RN friends and my health coach (insurance) for judgment. I find that when so sick, one loses one's judgment. Any advice from anyone? Also, does anyone take Metameucil? What exactly does Metameucil do? One more thing: could this amt of Tylenol hurt my liver? Thanks for any input, comments, suggestions.