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Has anyone with UC stopped responding to Entyvio?

Digestive Health | Last Active: Jan 26 2:41pm | Replies (48)

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@mauionmymind

TY so much @msgtrebholtz for your encouragement. May I ask more info about your proctocolectomy? With an autoimmune disease, once the colon is removed, will it now just start attacking something else? I’ve had the ‘last resort’ in my mind from the beginning & the more I hear about it the more it doesn’t sound SO bad. I will say I’m truly scared about being on 6MP (if it even does work) for long term. I’ve been on prednisone for an 11 month yo-yo & back on another yo-yo since mid June (+ possibly another 5 months). I see GI for “next step” on Monday.

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Replies to "TY so much @msgtrebholtz for your encouragement. May I ask more info about your proctocolectomy? With..."

I actually don't recall what 6MP did to me. It seemed whatever I took did something, either physically or emotionally or both. I can tell you none of them did anything good. And on top of that I would always have a nasty flare after coming off them.

The only med that worked was pred, but I couldn't deal with the weight gain.

I have never heard of a migrating auto immune disease, but anything can happen!! LOL!

As for me the damage of 8 years of UC and the failure of every treatment took it's toll and led me to surgery.

I sought advice from the Centracare Chief of GI. He said surgery was my best bet, but he referred me to another Gastroenterologist whom I didn't get along with.

So my third second opinion was from an awesome surgeon who did my last scope. She said there wasn't much to talk about because there wasn't much colon left in places and because of my anal and rectal damage there was about a 1% chance that a J loop would work. Her words were "your best bet is a total with a Ken butt"!! So that's a complete removal of colon, anus and rectum with a permanent ileostomy.

After surgery is when all the fun begins. I'll tell you about it if you like. I will tell you it's not the best experience I've ever had, but the result made it worth it.

I went from living in the bathroom (almost literally) to working full time, working out at least 4 times a week and I run almost daily. My goal is a 1/2 marathon, which I look to reach in Rochester, MN at the Med City marathon next Memorial day weekend! It makes me feel good that my "victory lap" will take me right in front of the Mayo Clinic!! Doesn't get any better than that!