home from hospital but not getting better

Struggling through a flare like I've never had before....

Three weeks ago I tested positive for C diff. At the time I was on 40mg of prednisone but my doctor had me stop immediately and put me on flagyll. biggest mistake ever. my colon became so inflamed (I've been steroid dependent for a year now) I ended up the hospital for the first with a flare. I was put on vanco even though from the time I was admitted to the hospital I tested negative for C diff. I was given IV steroids and went from going 40 times a day to about 15 times a day. after five days I was sent home to continue to recover. I felt better at first, but I think that was because I was getting my strength back from being severally dehydrated and I was slowly able to eat more and more. But as far as the frequency, urgency, and stomach pain...two weeks later and nothing has changed. I'm going 12-15 times a day. Only 1-2 of those are somewhat formed. this flare is different for me because I normally have blood and mucus, but I haven't had either. Also, my stool is almost orange in color, yellow/orange on toilet paper. What could this mean? Is it still bad bacteria in my colon from the c diff?

I am on 60mg pred, 4.8g Lialda and probiotic as well. I also got my 4th Remicade infusion this past Monday-my first double dose. I've had a better appetite since then, but no other symptoms have changed. I plan to call GI first thing Monday, but wanted to get some insight from here first.

I've been out of work for going on a month, been scared to leave the house, and unable to have any normalcy in my life. I've slumped into depression and I'm trying to keep hope that things will get better but this is such a long process and I don't know what to do.

Post Edited (ktj757) : 2/20/2016 4:38:16 PM (GMT-7)

I'm really surprised that your dr had you suddenly stop such a high dose of pred after you had been on it for so long. That sounds like a very dangerous thing to do. And I am very surprised that a dr had you on pred that long in the first place. I am thinking you might need a different dr!

Are you still on Vanco for the C-diff? You might want to get another c-diff test as well. My understanding is that it can be very difficult to get rid of completely. You could have been re-infected after your last hospital test.

What probiotic are you taking? Whenever I have had to take antibiotics I doubled up on my probiotics during and for at least a week after I finished the antis. Also I ate a lot of fermented foods (mainly yogurt and kefir).

I hope you feel better soon. If you don't perhaps it's time to at least get a surgical consult so you can make an informed decision if it comes to that. But my first thought is that this could still be related to your c-diff issue.