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Ulcerative Colitis
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Posted 7/14/2015 8:04 PM (GMT 0)
I haven't posted in a while....nothing new to report....still have colitis!

In addition to monthly IVIG I'm starting Entyvio this Thurs. The plan is to get me stable and then wean me off IVIG. Hopefully this puts me in remission and keeps the PG at bay.

I could sure use a break from this disease...1.5 years of flaring has taken it's toll...on my bank account (not working) hair (falling out) mind (depression) legs (PG).

Fecal Calprotectin is over 500.

Still going about 6 times. no blood, slight m, and severe urgency. As in severe, I'd better be on the toilet when the feeling hits!
Posted 7/14/2015 8:25 PM (GMT 0)
6 times with no blood isn't terrible at least. Hopefully entyvio gets you to 100%. I know that urgency you describe. I've literally had times where i have under 2 seconds to get to the toilet. I can't believe this is a real problem for us - how evil is this disease...
Posted 7/14/2015 10:02 PM (GMT 0)
yep. 40times was terrible. Now it just sucks!
Incredibly evil.
Posted 7/14/2015 10:08 PM (GMT 0)
Looks like the right direction anyway. Good luck with the E.
Posted 7/15/2015 3:08 AM (GMT 0)
Thanks Gary. Hope you are still seeing results from WOO. It really helped my abscess.
Posted 7/19/2015 3:44 AM (GMT 0)
I had to switch to Entyvio after Remicade stopped working after 8 years. The infusion time is faster. I was a little apprehensive during the first treatment as my mind was racing. I had good results after the first 4 treatments. I was given a colonoscopy after 16 weeks and it showed tremendous healing ( for me) but the pathology report came back with some naughty dysplasia and the cancer scare is causing a return to the surgery mode. good luck, I sure felt better while on it
Posted 7/19/2015 12:32 PM (GMT 0)
Great news for me to hear! My clinic nurse also had some positive things to report from her other patients. I had a mild headache/nausea the following day but have recovered.

Ivig had me in remission for about 3, but now it has a limited reach, partly because the regulations are so strict that I can't get enough.

I'm sorry about the dysplesia. That's a tough dose of reality. I wish you the best.
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