Guidance on long term flare please!

Hello,

I am a 21 year old male diagnosed with UC about 6 years ago. In that time I have never experienced a flare as bad as this, or any of that matter.

It all started last June when I was studying abroad in the Czech Republic. Long story short, when I returned to tge US I started to have those lovely UC symptoms. I went in for a stool study and had positive results for travelers diarrhea, which I was ultimately treated for using antibiotics.
UC symptoms still continued. 7 months later I am still in a flare after so many medications. I have been on prednisone for 7 months straight at varying doses trying so hard to get off of it. I started Humira about 4 months ago, but honeslty doesn't seem to be fixing the problem. The frequency in which I need to go to the bathroom went do significantly but blood is still visible and I do not remember the last time I had a healthy bowel movement.

Yesturday I got a fever which I believe was from the tapering down of prednisone because it went away less than 24 hours later. But it left me with more blood in my stool and more frequent movements.

I take humira weekly. And I am very concerned that it has not helped me yet. Am I just one of the few that is non responsive to humira?

My doctor us considering even more doses of humira along with methotrexate...on top of everything else.

It honestly feels like there is no hope and this is what I'm stuck with for the rest of my life. I am so afraid of surgery and an ostmy bag (even though that hasn't been discussed at all).

I'm feeling kinda depressed thinking about it all. Some guidance or shared stories would be much appreciated please.

Thanks

Are you only on humira at this time? I ask as the best results occur when we use multiple medications at once.

65-62 percent of us respind to humira. If you've seen any response at all then you've respinded to it. Some of us see notjing at all from humura.

Diet helps some people but not all, a lot of people cut out gluten and dairy and have great results!

Just wanted to update,


I started methotrexate, 25 mg weekly. In total I am taking methotrexate, 750mg balsalazide, weekly humira 40mg, 10mg of prednisone.

This seems like a lot of medication.

I am still going about 4-5 times a day. Slight bleeding with each one. I would say 2 out of the 5 are actually "relieving" and the consistency is like mush. The other 3 times I have the urgency to go but it ends up being gas and mucus. Toilet paper is soaked after every movement from what I can only assume to be mucus and a little bit of blood.

I am going to stay on methotrexate for one more week then my doctor is going to start a round of antibiotics. This is because all of my stool samples came back normal and there are no signs of inflammation.

Does anyone have any suggestions of what I can do? Are has anyone experienced symptoms with no shown inflammation?

If this is still a flare I will be coming up on 8 months straight, personal record!

I was in a bad flare and was started on humira every 2 weeks for 7 months than weekly humira for 3 months plus we added cort enemas nightly, lialda 3 tabs daily, finally we added preds in the end with no relief and I was getting worse, lots of blood and mucus etc. and urgency @ 15x daily, cramping/pain @ level 8.

Then I was admitted to the hospital for 3 days so my insurance would cover for me to start Remicade infusions. The doctors said sometimes we have to do this so that we can get you started on the Remicade infusions, after that it will be easier to get you into a infusion center for your infusions. So off I went and I started my Remicade infusions in the hospital and have been in remission since my second infusion.

Now I do my infusions at a infusion center every 6 weeks and take lialda daily. I have been off the preds for 3 months now.

Hope this info helps. Good Luck!