Posted 7/26/2017 8:29 AM (GMT -5)
Hi All,
My situation is confusing with lots of things intersecting so trying to figure things out is difficult.
I started Stelara on May 24th. At that time I was having solid bm's, about 1-4 day, with some urgency.
I had a scope in Apr (while hospitalized for 6 weeks- fistulas/abscessing) that showed "deep ulcerations" in lower sigmoid/rectum but this didn't seem to manifest in the symptoms (not too many stools). I was on 80mg/weekly of humira. I was also on high doses of oxycodone which I found to be binding (not constipating but healthy people bm's). I was also on IVIG which also help by bowels.
When I started Stelara on May 24th, my humira had stopped for 3 weeks...bowel deteriorated a bit but wasn't really "flaring."
I went through oxy withdrawal and bowel remained good. Side pains stopped within 4 days of Stelara. I started to think that maybe Stelara was helping. Things continued to improve, especially after my June 24th IVIG. I was having 1-3 firmly solid, beautiful bms. Urgency much better and could tell when I'd need to go. I could get up and go out! Still using 1 imodium a couple times a week due to anxiety if I was going out and unsure of my poop schedule. Eating everything! Going out a bit etc... Still dealing with abscessing and fistulas but my bm's made life more tolerable.
Last Wed all hell broke loose. My 2nd Stelara infusion. Bowel great. Suddenly that night, excruciating fistula flare....next day, itching, nausea, sleeping. No poop. Stayed in bed. Lots of pain. By Sat night, purging bm, cramps and I new I was in trouble.
Bowel all dirty, yellow, foul smelling water. (This is usual for my flares). Yesterday went once, today twice thus far. Afraid to leave house. Still itchy and now bad headache. Hgh anxiety.
I can likely get IVIG and I'm sure that will help, just concerned about mixing it with Stelara.
Any idea what happened? Did Stelara stop working? Or maybe it wasn't working at all, it was just residual humira, narcotics and Ivig?
What should I do?
Thank you,
Litttle appetite, not really eating or drinking