Advice??? Guidance??? Help?? Anything at all

Hi folks,

So I'm just gonna get right down to it - I don't know where else to turn. I feel like I've hit a dead end with my treatment, and I don't know where to go from here. Let me try and give you a brief synopsis, and then ANY advice or guidance at all would be much appreciated.

I am a 22 y/o female, was diagnosed when I was 8 years old, for background. I was in remission for 10+ years, however in 2016 I began flaring once per year for a few months at a time.

During my 2016 flare, I was also diagnosed with C Diff. One round of Flagyl, one round of Vancomycin, and some Uceris, and I was flare free in about two months. My main symptom was blood and mucus, with all formed stool.

During my 2017 flare, it was much more stubborn. Took about 4 months to come out of it, and was given Uceris, two rounds of Vancomycin (even tho I tested negative for C Diff), and Prednisone. Same symptoms, blood and mucus, no d.

I have now been flaring again since late October, so a little over a month. Tested negative for c diff, but still did a round of Vancomycin to be safe. Was then given Uceris, then Prednisone, and I also have been using Canasa suppositories because my last flare showed some super mild inflammation in the rectum along with some internal hemorrhoids. What is really freaking me out about this flare, is I have had horrible Diarrhea and urgency, which is never an issue for me, with no blood. I normally consider my colitis to be pretty "functional" - my symptoms don't prohibit me from going places or doing things, they're more of a "red flag" that something is wrong. However, today I literally had to leave my job because the urges for diarrhea were coming one right after another after another. I just finished up my prednisone taper this past Tuesday, and boom things went from formed, no blood, mild urgency to oh my god I cannot even leave my house. Very scary to me. My doctor had me do a stool sample today, and told me to take immodium to slow things down until we get the results. But im just confused as to what on earth im supposed to do next? Go back on prednisone just to have this happen again? I have been on Lialda since I was 10 years old as my maintenance medicine, and I'm thinking these recent flares mean its time to change that up, but when im back in remission I never want to mess with my treatment plan.

I'm sorry if this is kind of incoherent, I feel pretty out of it to be honest. Please feel free to ask any questions, or give any advice or input as to what my next possible steps could be??? I'm just so young and I feel like my life is being robbed from me. thanks in advance!

I second what Ipoop says. There are still a lot of medications that you can use that can bring you back to normal. At this point, I wouldn't go back on steroids unless it was a bridge for a new medication.

hey blue blossom :-(

just curious >

how much Lialda are you currently taking ?

do you remember what your initial diagnosis was ? what kind of doc are you currently seeing ?

and please, try not to take more pred - you have many other options -

The fact that you said this last bout hit you really hard with D, it makes me think it’s c diff again. It’s been 9 days since your original post- have you received any answers since then? Was the c diff test positive or have you been able to try any additional therapies?

It’s frustrating, I know. I went through 3 doctors before I felt like I finally met one that knew what he was talking about and was able to treat me appropriately. One doc was like- idk what else to suggest, bc you’re not responding to any of the treatments. Time for a surgeon. I appreciated his honesty but was terrified. I’m not saying you’re there yet, but don’t be afraid to go to a new doc or look around at diff specialists.

Let us know how you’re doing.