Everything is going wrong... looking for advice

Long time lurker. Thanks to everyone who posts advice and stories in these threads, its really helped me this past year.
Onto my problem. I went into my first major flare up early this March. Bloody D an hour after I ate anything, accidents left and right, 10+ BMs a day. It was brutal. Before this I was only on 2 lialda a day and the SCD diet, but during the flare none of that seemed to help so I met with a new GI in NYC.
He prescribed 60mg of Pred to start and told me to cut the diet since I had lost so much weight. On day 1 I felt way better. I was having pretty solid BMs, going once or twice a day, and all urgency and blood was gone. The next week I dropped to 50mg of pred and started taking 6mp (50mg) once a day to help in the long term. But when I dropped to 40mg of pred things started going south. First I caught a mild cold and cough, which has me hacking up phlegm every morning. Then my BMs got more and more fluid and more frequent. When I saw a little blood I called my GI and got put on Canasa as well. I dropped down to 30mg as planned this past monday and over the course of the week everythings gone to hell. I'm back to having straight blood BMs and going every couple hours. Still got that cold and phlegm. Plus I'm having dire urgency and its making my life miserable, mostly because today was also my first day at my new field job.
I'm pretty worried because I'm flaring so badly when I'm still on a pretty hefty dose of pred (30mg) AND taking to other meds that are supposed to clear things up. I'm gonna call my GI on monday but I have no idea what he'll even propose I do. Let alone how this is going to affect my new job. If things stay this way I simply won't be able to work.
Just wondering if anyone else has had similar issues and made it out ok? I want to believe that the 6mps and canasa will take care of me but when my body isn't even functioning anymore with pred (my first time taking it as well) then I'm worried that I'm a lost case. Sorry for the essay, any input would be appreciated... thanks guys

Hi Andrina,
I've been on the 6mp for 18 days now. Canasa for just about a week. I'm just worried that even with my current dose of Pred I'm in such rough waters.
I was hoping I wouldn't be on a dose like 60mg for months on end. But at this point I'll do anything to get relief, as bad as that sounds. I don't want to have an accident on day 2 of my new job... I guess its up to my GI now

Will GI's really let patients go on such high doses for such long periods? I thought that much pred could have really nasty side effects

I'm not as experienced as others here ( and I'm no fan of pred even though it's delivered me yet again from the depths of hell ), but it sounds like the taper was too fast. How often were you dropping the dose ( sounds like 10mg drops )? Every week or so?

You're definitely not a lost cause, take it from a lost cause. You have a lot of options...

I ran out of options and had surgery and I am WAY better than I ever was with UC, so take it for what it is, even in the darkest times, there can be hope. Consider bioligics for now, you could see drastic improvement very quickly with the help of biologics.

hey there xeno - welcome !

no one wants to be on pred, but if have to go down that road, make it worthwhile - tapering too soon is just a waste - there obviously is a point where you need to get off it, and that time is different for everyone, but in your case, i think you have the time to let it work while the 6mp starts to work -

and yes, ADD the mesalamine or steroid enemas to the canasa - most do enemas at nite, supps in the morning -

oh my. Poor you. And a new job! Really tough. There's really no quick fix with this disease. 6mp takes about 90 days to kick in. You could research antibiotics to see if that would help given you have some sort of infection. There's also natural ones like grape seed extract or oil of oregano that's helped ppl here. (Research on this forum).

You may want to try Imodium/lomitil to get you through the work day. Just go easy with it.
Hang in & hope you get better.

xen..I really hate it for you, and everyone else with this illness. You have a bit of extra stress also, due to the job. THAT doesn't help much. Maybe your GI doc can prescribe a short term of some anti-anxiety drug as well as your other meds. Also...Kefir really does seem to help ME...but we're all a little different. Good luck and don't let it get you down. It WILL get much better...just have to find the right combination.

I'm sorry to hear you're going through this, particularly when you've just started a new job. I know how that feels, I started a new job six
months ago and there was a work trip about 3 months in. Of
course I got extremely sick and ended up in hospital and missed the trip. The whole company was there, including people from the states, and me the new person couldn't make it. I honestly thought my job was over, but everyone was understanding and worried for which I'm grateful for. I too feel if it gets to the stage where I can't work a full on full time job, I'll talk to work and see if I can do part time or come to some alternative, or worst case get a part-time job. Neither of these things are the end of the world, you just have to try and stop beating yourself up about it, people are generally nicer than we give them credit for :)

I would ask if the mean anti-TNF or all biologics. Entyevo is not an anti-TNF.

Short of hitting some probiotic (or even FMT) good result, or finding foods that really help manage symptoms, I do not think there are many other med options.

There is also a triple-antibiotic therapy that got a little press, and some people hope MAP stuff from CD world might eventually lead to something useful for UC.

I think there is some room ot play with the 6mp dose and even to add allopurinol to tweak 6mp metabolism. www.ncbi.nlm.nih.gov/pmc/articles/PMC2659140/

if symptoms do not get too bad, semi-management for a few years could let you hang in there to other meds come out of pipeline.

hang in there