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Has anyone with UC stopped responding to Entyvio?

Digestive Health | Last Active: Jul 7 12:41pm | Replies (60)
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@lisag03

@hardingv
Wow. You’ve gone through a lot. I have had IC for my entire adult life. I’ve done a multitude of drugs and it’s been managed fairly well, but never full remiasion. Remicaid was forced on me because I refused more prednisone and it didn’t work and caused a flare. I have been on Mesalamine since 2011 and it has been fairly good, more moderate inflammation. I went from a clear colonoscopy (still inflammation and active disease) in 2018 to an obstructing tumor in 2019. It was (and still is) recommended for me to get a colectomy, but I found a surgeon who was willing to try removing the tumor and resecting. That wasn’t without issues, and I developed lots of complications, and also couldn’t finish chemo. But I have been cancer free for 5 years and my UC is managed.
My UC only caused bleeding during a flare, and I’ve only experienced two flares since I was diagnosed with UC. I don’t have frequency, and feel really good. But, my GI wants complete remission and they are still pushing me to just get a colectomy. I’m against that and feel like I’m at a crossroads medically. I just don’t want to do something that drastic when I feel great and go to the bathroom once or twice a day.
I will ask about Rinvoq. I’m due for another scope in the fall, so we will see how I’m doing since we increased to monthly Entyvio

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Replies to "@hardingv Wow. You’ve gone through a lot. I have had IC for my entire adult life...."
hardingv | @hardingv | Jul 6 10:05pm

@lisag03
Another loong response. 😄

I expect if I was in your position I also would not be inclined to have a colectomy at this point.

Drs kept telling me "We treat to target," meaning they wanted to see remission in both clinical symptoms and endoscopic results. But I wouldn't start more advanced treatments like biologics until my clinical symptoms got worse.

Colectomy was added to the alternatives after Humira failed. And then when Entyvio failed and I ended up in the hospital a couple of times with severe dehydration, my GI dr was willing to continue trying drugs but noted that if I kept ending up in the hospital there would come a point where I would not have a choice.

So, at my request he gave me a referral to a colorectal surgeon for a consultation so I could be prepared in case I had to make a quick decision.
The CR surgeon was great. He patiently walked me through the basics of the alternative procedures, and when I had questions about life post-surgery, he gave me a referral for consultation with 2 WOCNs.

I guess they don't normally talk to patients until after they have decided on surgery, but the surgeon thought it was a good idea to explore in advance so I could make a quick informed decision if necessary.

I learned that a colectomy clearly was not Valhalla. My husband kept saying everybody LOVED their bags and it was the best decision they ever made. Well, the reality is he didn't know what he was talking about. There are a number of ongoing potential issues, and there are different types of ostomies (starting with colostomies v ileostomies), each with their own issues.

So, in 2021 I decided it was not something I wanted to do, and the surgeon agreed it was a reasonable decision.

But in 2023 I made the decision to go with the colectomy. It was not an improvement in quality of life since by then I had only 2 or 3 BMs per day on Rinvoq. With an ileostomy I empty the bag more like 8 - 10 times a day, though unlike UC I can control when I go. However, when I developed cancer it was the right choice for me.

My colon was basically shot by then. They tried to do the procedure laproscopicaly, but had to switch to a full mid-line cut mid-procedure. So even if they did get all of the identified cancer in the EMR, other precancerous spots were already developing, and I was probably looking at additional cancer in the short term.

If your dr is receptive to arranging an entirely informational consultation with a colorectal surgeon I would recommend it.

In the meantime I hope your dr will consider Rinvoq.

Good luck!

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