Flare for well over a year, not sure what to do

This might get a little long so please bare with me. I want to give a little background incase anyone else has had similar issues and I'm hoping anyone has any ideas what to do.

i'm 33 years old. I was born female and started transitioning to male (testosterone hormones) Oct of 2015. I bring this up because this is when the UC problems seem to have started. I also stopped taking zoloft at this point and I'm not sure if that triggered it.

I was diagnosed with Ankylosing Spondylitis when I was 17. I was on enbrel for a long time then switched to simponi a few years ago. My mother has pretty bad UC but keeps it under control with azulfadine (only takes it when she flares up and it fixes after a few days, when she was younger she was in the hospital a lot)

I never had a bowel issue before until early 2016. I let it go and never looked into it and ended up in the hospital in May of 2016 unable to walk because of erythema nodosum and was diagnosed with UC. I was on simponi at the time.

The doctor I saw didn't seem to like me much or care. He was more concerned with why I was on hormones, which kind of sucked. He gave me a colonoscopy, said because my mom has UC, so do I. gave me a prescription for a ton of azulfadine a day and I was released.

The azulfadine didn't work, it actually made me nausious and feel worse and did nothing for the UC.

Eventually, I found a great doc that put me on humira once a week, 4 lialda a day and one canasa at night. It helped a little at first but my flare isn't budging. I'm miserable. I've had accidents in work, I can barely make it thru a meal without running to the bathroom. Right now the fatigue is so bad I constantly feel detatched and like I'm using all my energy just to not fall over.

I'm seeing my doc again on monday and might switch to remecade. Anyone else have slightly similar situations? Or anyone switch from humira to remicade with results?

Welcome to the forum, but I'm sorry you have to suffer from bowel issues like we all do here.

Hormones could possibly be a trigger that upsets UC. I often read posts about women flaring when they get pregnant, as an example. Another example is using birth control pills to stabilize their UC as points within their monthly cycle can cause symptoms to worsen. I hear a lot anecdotally about it, not sure what scientific literature backs it up.

Azulfidine/Sulfasalazine is an older UC medication that is know to cause a lot more side effects (like the nausea you mentioned) than the new medications like Lialda do.

You might need steroids like prednisone to control your flare, I'd ask about it. I only found a remission (that is an absence of UC symptoms) by being on a lot of medications simultaneously: remicade, lialda, rowasa enema, 6MP, and prednisone. If you are only using one or two medications at a time then it might lessen your odds of controlling your flare. You could ask about adding in an immunomodulator like 6mp/imuran.

Have you had your stool tested for pathogenic causes like C Diff? It mimics UC symptoms and only responds to antibiotics.

How long were you on Simponi?

How long were you on Humira weekly?

You should give both at least 6-weeks to work.

Did you get your colonoscopy report and your biopsy report results? Just because your mom had UC doesn't automatically mean that you have it (more likely, yes, but far from guaranteed).