What is "Getting Better"?

I know, it's a weird question, but with this being my first flare and on entyvio, I've read with entyvio, it is a slow process of getting better every day before achieving full remission.

Pretty much I just finished my last loading dosage last week so it's now 7 weeks for my next infusion.

Looking back on the last few weeks, I guess I have seen improvement. Sometimes I see my bowels are regaining some form, kind of like a toothpaste form. Urgency has been better for the most part besides in the car in the morning. That part of the flare is still brutal. If anyone has suggestions for how to make my morning commute better, i'm all ears. I've also seen my trips to the bathroom decrease and what happens during each BM decrease where I'm going less. Finally, I've noticed it is more gas now than ever before.

This sounds all well and good, and compared to where I've been, it is a huge relief. However, is it normal to still have bad days and really bad urgency at times? I know the path forward is likely not to be completely up on a straight line, but was just curious for anyone getting over a flare, what "getting better" felt like?

It took me a full year on remicade to reach a remission. Improvements were big during the loading doses then very, very slow in maintenance dosing.

It's the kinda thing that I'd start the month pooping on average 4 times a day. The first week I'd get a couple 3 bm days. Second week I'd have additional 3-days. By the end of that month I'd have mostly 3-days and 4-days being rare now.

Same thing with solidness. I'd start one month with average of fluffy/ragged edge bms. I'd get a few bms the 1st week that were a bit more formed. By the end of the month the raggy edge bms were rare. Not to say my bms were normal over the course of a single month. It was small improvements each month.

Same thing with total bm volume. As things get more solid and dense you no longer ice-berge the bowl eaxh time haha.

I was tested for c-diff back when the flare started in November. I have had blood tests since then regularly, largely to monitor my iron levels.

When my flare started, I had terrible diarrhea and pretty bad urgency along with pretty bad bleeding. that lasted most of November and December while I was on Lialda which lasted me from my diagnosis in August 16 to the flare in November 16. From November to mid-December we tried increasing the dosage on the lilda and some rectal medications but nothing worked so I went to Prednisone. It actually worked on my symptoms mostly except for the bleeding. Once off Prednisone we started Humira which never took affect. Symptoms came back, although less serve, after the Prednisone was lowered and never got better or worse with the Humira. GI tried to put me on azathioprine with the humira, but the azathioprine just made me ill so we ended both medications and now i'm on the entyvio with the moderate success so far. had a good day yesterday with only 1-2 BM, but a bit below average today.

i would be interested in trying something with the entyvio to get me into remission faster. it has been a long 11 months with this flare, so i'd like to get my life back. last time I saw my GI, we had talked about a steroid to go with the Entyvio, but he opted not to when i told him i was seeing an improvement.

he said surgery is likely the next option, but i figured i still had medications available? doesnt seem like i've been on a ton of medications thus far and i would like to exhaust all medications and even alternative options/clinical studies before opting for surgery.

best case would be entyvio gets me into remission for years and then the next flare is treatable with a new medication or advancement.

Have you thought about trying Uceris to help you through while the Entyvio starts to take effect?

No, you can take Uceris as many times as you need.