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Ulcerative Colitis
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Posted 3/13/2017 3:00 PM (GMT 0)
Hello All,

First time posting here to healing well.

I have officially been diagnosed with UC since 2003 colonoscopy
Since 2012, have not been well. Went thru lots of medication combos, biologics etc.. and now I am at Entyvio every 4 weeks, VSL and Flagyl daily. Try enemas and suppositories but really struggle with them.

This past year had a bout with Uveitis, facial rash, significant joint pain. that has since cleared Recent MRI and CT show significant left sided colitis including rectum. Everything else in the films looked normal. Obviously the Entyvio is not improving the inflammation. My bloodwork is starting to normalize, CRP is close to normal.

For the first time, I have a perianal/perirectal abscess that is really taking a long time to heal. I've had it drained by the surgeon twice. They Dont want to place a drain yet. My BMs are fairly formed now, not much blood. lots of joint pain arthritis and pain from the abscess. Question is should I be taking next steps to diagnose whether I have colitis vs. crohns. I know the abscess is more common with crohns. Does anyone here have a solid UC diagnosis and get these abscesses? Also I am at a loss with what I should discuss next in my visit with the GI, back to remicade? something else. Thanks for any feedback!!
Posted 3/13/2017 4:06 PM (GMT 0)
Did you have to stop Remicade for a reason? If you have antibodies, there is no use going back. Humira has some success with absess and fistula, might be worth trying Humira.

What is the daily Falgyl for? Is it to manipulate gut microbes? or to fight an infection? It is likely undercutting the effect of probiotics.

the meds do not differ much for UC vs Chrons, so the diagnosis may only really matter if the question of surgery comes up.

CT is not as accurate as scope and biopsies. But if you do need to treat the rectum, some sort of rectal med would make sense.

good luck
Posted 3/13/2017 4:16 PM (GMT 0)
Welcome to the forum but I'm sorry you have to deal with uc symptoms like we do.

In your shoes I'd add an immunomodulator like azathioprine/ imuran or 6MP to your biologic as multiple meds are often more effective than just one. Entyvio can take 12-14 weeks to work, so i wouldn't give up on it just yet.

There's no definitive test UC versus Crohn's. A history of colonscopiee and biopsies can help. There's a Prometheus IBD SGI test that's newer and supposed to help. /www.prometheuslabs.com/Products/Default.aspx
Posted 3/13/2017 5:31 PM (GMT 0)
Thanks for the feedback.

Flagyl was added due to perirectal abscess and it actually helped my stools frequency/urgency etc.. It hasnt helped much with the abscess unfortunately but my colitis has improved so I think there was definetely a gut biome imbalance

I have taken the prometheus test some years ago and I believe it was inconclusive which is frustrating for such an expensive test.

I switched from remicade last year because I wasn't quite getting there, sort of stagnating after a few years and I wanted to try Entyvio in hopes of getting closer to remission. Never developed antibodies to remicade. I am approaching a year with Entyvio so I feel like I am running out of options. Sounds like i should consider adding an immunomodulator and i'll try rectal meds again.
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