The story so far...

Hi everyone. I’m a long-time lurker and first time poster. Diagnosed with severe ulcerative pan colitis in early 2011, which was only brought under control with IV pred. I obtained remission for a bit over a year with oral mezaavant (5ASA), had a few blips that were controlled with rectal 5ASA enemas and cortifoam as needed.

I had a severe flare in late 2012 that resulted in 3 weeks hospitalization, blood transfusions, the whole bit. I was put on pred again, flagy and cipro, imuran, remicade. Vitamin D and calcium to stop some of the pred nastiness.

After a few infusions of Remicade out of hospital, we decided that it wasn’t working nearly as well as it should - I only obtained a “sort-of” remission, and would start to flare after dropping drown on pred again.

6 weeks ago I started a clinical trial for tofactinib, and stopped all other meds, except for staying steady at 15mg of oral prednisone. Unfortunately I started to flare again and had to drop out of the trial after ~4 weeks.

At this point, my GI recommended surgery, and I had my consult last Thursday, but wasn’t ready to set a date.

In between all these flares for the past year (really, I think it’s just one long sustained flare), I’ve also tried:
Gluten and dairy free, SCD (though I admittedly found it tough and didn’t stick with it for more than 2 months). Currently eating bland food.

Ultimate Flora Critical Care, VSL#3, Mutaflor, Florastor.

All-in-one Liquid Multivitamin, Liquid Calcium/Magnesium/Vit. D. , Udo’s Oil 1000 mg. capsule.

Circumin, black cherry concentrate, aloe vera extract.

Though some of it has changed things (probiotics make things….different - there’s a noticeable herx reaction), nothing has helped me avoid a flare.

So, it seems like I might be at the end of the road. Currently on 60mg IV steroids, and staring to see some improvements. My parents (who are absolutely wonderful) are pushing for surgery…but I’m not sure if I’m ready.

On one hand, in a bad flare I have nearly zero quality of life - I’ll sleep over 12 hours a day (interrupted by bathroom runs of course), I can’t work, have no social life - if untreated I get severely anemic, dehydrated, and malnourished. The fatigue is absolutely unbearable - it feels like I can’t even think, and I could never write a post like this. Sometimes answering the phone isn’t even an option. Severe depression kicks in pretty quick.

And despite this, I worry that I’m still (fairly) young at 26, and that surgery is so…final. Yet on a bad day, I’m ready to check in.

Sorry for the novel…but does anyone have thoughts or advice? I’m nearly out of ideas.

You are on a lot. Maybe too much. Have you added all these things one at a time? Do you know for sure that every single one of these things actually helps? It kind of sounds like you started taking the whole kitchen sink all at once. Some of the things you mentioned help some but make others worse. I can't help but think that maybe if you started taking this stuff all at once that maybe one or more things is actually making you worse and you don't know it.

Only you will know when you're ready for surgery. But you seem to be suffering pretty severely. For most of us, surgery ends all that. I suffered for 11 years with miserable quality of life, missing out on so much and bouncing in and out of the hospital. I'm now a month out from j-pouch takedown and so happy! I was outside playing with my kids today without having to run to find a bathroom. Check in on the ostomy board and we can answer your questions and share our stories, good and bad.