Thanks everyone. Seems to be a general consensus to stay with remi. That's what I was thinking too. I was in really bad shape before I started remi -- severely anemic (had to get blood & iron transfusions), high dose prednisone, BM 20x times/day, urgency etc. It has given me my life back. Definitely don't want to go back there.
Question -- since my remi levels are so high do you think the problems could be from too much remicade? Like maybe lower the dose to 7.5 mg? Or would you leave well enough alone?
I don't generally have FCP tests because the closest lab is 20 minutes from me and they told me I have to get the sample there within 30 minutes. Makes things rather difficult. Other stool tests can be refrigerated but the lab told me that the FCP test has to be fresh.
I swing back & forth between thinking this is a flare and thinking maybe it's IBS. At first I was sure it was some type of pathogen (started with colon cleansing diarrhea -- like a scope prep) but the diarrhea went away after a few days and the stool tests were all negative. Just that the fully formed stool I had before has never returned since then.
tiredofallthispoop -- hope Stelara works for you. I have heard good things so fingers crossed for you.
Susie -- usually if I eat a lot of fiber things get very loose (I said I am weird lol) so I am careful about
that. If I eat too little I get constipated. It's a crazy balancing act.
Countess -- I hope remi kicks back in for you!!
Rocket Man -- I can't take Imuran or 6mp. Tried both and had liver issues with both
Will let you know what the doc says when I see him on 9/3. Wow! That's next week! Does anyone else have problems with the passage of time these days? One day seems the same as the last since I work from home now and don't really go anywhere. It's like I am stuck in pre-covid time waiting for this all to go away.