What the what is going on?!

I was dx'd with UC in August last year. I've had pretty much no response to Sulfasalazine, Lialda, Uceris and Humira. Rowasa does help me some, which I do nightly.
Last week my doctor ordered several stool tests. However, in the meantime the prescribed Cipro and Flagyl suspecting there might be something more going on. I was going to the bathroom around 20 x a day. Intermittent blood and nothing resembling formation. After about 4 days of the abx, I've decreased to around 6x. I've even started seeing formation in my stools. However, some of my stool samples were lost. One of the parasite tests came back negative. Two came back insufficient and the C-diff test apparently vanished.

I've got no idea what to think other than I feel like a new man even though I'm still going 6x a time. Although, I'm not in remission, it is a world of difference from the 20x with severe cramping and straining I was doing. So here I am wondering what is working. I did my 2nd loading dose of Simponi on 8/8. I'm on the abx and I've been on 30 mg of pred for about a month until today, which I went down to 25.

I am going to Emory University Hospital on Wednesday to be admitted with no idea of what to expect. That was arranged while I was still going upwards of 20x and my current GI suggesting that colon removal was on the horizon for me.

Post Edited (jacket fan) : 8/11/2014 9:34:49 AM (GMT-6)

LOL. My treatment plan has been less than ideal! My doc prescribed Simponi, but due to the hang up with getting in approved, he gave me a 30 mg pred taper while I waited. I started doing a little better after about 4 days on it. But he had me going to 30-20-10 every 7 days. I took a turn in the wrong direction after about 4 days of being on 20. That's when he bumped me back up to 30 indefinitely (I'm tapering on my own). I finally got my hands on the Simponi while I was already on the pred. The abx kind of just got thrown in the mix by my doctor because he's at a loss (I'm his hardest patient, woo hoo!).

I can only think of one other time that my stomach/colon has felt this at ease in the last year. I still think it's early for it to be the Simponi (I first started feeling this way only about 11 days after first injections). I'm sure the pred is helping some, but based on the storm that used to be in my stomach compared to how I feel now, I can't help but think it's the abx that are benefitting me the most.

That's what I'm afraid of BBUC. Were they not able to find some kind of correlation between the abx and UC? I'm scared that when the abx run their course I'm back to square one.

jacket fan said...
That's what I'm afraid of BBUC. Were they not able to find some kind of correlation between the abx and UC? I'm scared that when the abx run their course I'm back to square one.

I remember my GI specialist at the time mentioned to me that UC patients often find relief from antibiotics but he was against them as a treatment. He was a really smart dr. out of mt Sinai in NYC but he pretty much dismissed the fact that I was feeling better because of that. I later was under the care of another GI doc and she wasn't crazy about the idea either. Maybe some GI docs use them as treatment? I don't know. But I do know that they helped me that time. Over use of antibiotics can make you susceptible to c diff infection so I suppose that's why they are against it. Cipro is known for tendon rupture if it's used too much.

You really need the c-diff test done. If they lost it I would demand another one if you can do it while on antibiotics. It's possible though that it might come back with a false negative due to the antibiotics when you really might have it. It's hard to know what to do if you don't know what you're dealing with.

I would say that if your son had it then there is a good chance that you have it.

I would be shoving poop up my butt till it squirts out my nose -

er.. for the uninitiated, that's craptic talk for FMT

Good luck with the c.diff. I've been battling it since June, it's terrible. If this round of antibiotics doesn't help, I'm going to plead my doc for a FMT.