Hospital, day 5

Severe flare that includes all the usual stuff, with new right sided pain and bile from both ends. Under control with zofran, solumedrol@40, and a retry of Remicade at 10ngs. No infections, high CRP, endoscopy ok, sigmoidoscopy two wks ago showed inflammation to 40cm, but pretty mild. Symptoms didn't match the science markers. Gallbladder on ultrasound ok. Nausea relentless.
Made progress yesterday till a few bites of food, then wham, left sided pain that brought tears. BM's down to single digits, but that is with clear liquids...back to Tramadol.
Docs want Pred.to back up the Remi. I wonder if we should just try Remi solo to see if it is going to work. If not, we will waste lots of valuable time. Looks likely the disease has progressed along colon, but no colonoscopy for now- too weak for prep, and it really doesn't matter for treatment they said. She failed the Remi last summer, but has no antibodies.
If we don't do a taper from the solumedrol, what are we risking? Man, she hates that drug. Sitting here over a weekend is awful, but at least she is safe, kinda.
Thoughts, my GI partners?

Does she have any fever?

Gosh she is so young....I do hope everything works out for her.

Did they specifically test for c-diff? If not, start there asap!

It's college test time, eh? So hard. Lotsa stress excaberates everything. She sounds like a trooper

What's her crp? Any other out of norm numbers? Anemic? Blood in stool? How many BMs a day?

It may just be this norovirus. It's the Sydney g4 strain and it is a doozy. It almost threw me into a flare, I think. I had to nurse my guts for a month after. I had no fever. The nausea was like nothing I've ever experienced before and it was hard on my entire digestive tract.

That temp thing is important. It's her adrenals and autonomic nervous system being completely overwhelmed.

That really sounds like a virus. They wouldn't catch a virus on any tests they are doing.

I know this is silly sounding. But try getting her to take nice deep breathes and get that parasympathetic system activated. Watch some comedy shows, tell some jokes. Gossip about accquaintences at college. Just try to get her stress levels down. I'm crossing my fingers for you that this is just a flu.

Is her tummy gurgling when she eats? How did this all start?

Post Edited (PathogenKiller) : 2/22/2014 8:38:44 AM (GMT-7)

Sorry to read your daughter is in the hospital but it sounds like she might be improving. Hope she has a better day.

One last thought. They always test for c diff.. But make sure someone tested for E Coli. Sometimes in UC they don't do full food poisoning panels.

You say they think she could have passed a stone.. How are her kidney numbers?

Hrm.. The numbers you'd want to look at are BUN and what her platelets look like will give a clue. The 95 temp is concerning to me. I'd prob take a gander at the file in my door and make sure to note anything that stands out and anything they have ruled out.. I bet c diff is about all.

Katmom, just wanting to send understanding/supportive thoughts your way. A lot of us have been there to one degree or another. Make sure both you and her take a few moments now and then to breathe deep and acknowledge that you are doing all you can. Doing that usually helps me deal with adversity better.

Healing thoughts being sent your way. Best of luck.

Thanks all. She got out last night and is stable. 40 mgs of Pred, and due for 2nd of 3 -10mg infusions of Remicade, as part of the reintroduction concept.Won't know which is working short term, but docs want a 6 wk. min taper. BM's still frequent, but there is some form and less urgency. Dodged bullet for now.