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Advice please. Normal stool but bleeding when passing wind. Xeljanz 4 weeks

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Ulcerative Colitis
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Posted 6/14/2019 5:57 PM (GMT 0)
Hi everyone looking for advice. Story so far. Diagnosed with severe left sided UC in August last year. Hospitalised and started infliximab seemed to calm everything down. Sent home with the usual cocktail of pills. 7 infusions later it was decided that I’d failed infliximab as each time I tried to taper of pred symptoms got worse. Usual beginning with loose stools mucus etc.

So started Xeljanz 4 weeks ago. Stool quality has improved a lot. Almost like a normal person twice a day with normal consistency. BUT I have been getting extreme bleeding with it I can’t pass wind without bleeding!!!! It’s every time I have gas I have to run to loo and pass blood. Sometimes bright red sometimes darker red. This goes on through the night too!!

Today I found out that my calprotectin level is down to 206. Last tested in February at 407 so big improvement for me. At my worst it was over 2000!

So now I am wondering could these symptoms be something else??? Fistula? Piles? Or worse?

Anyone else experience anything like this?

Thank you if you’ve managed to get to the end of this post! 😊 just feeling like maybe I’m thinking this is UC related and it could be something totally different 🤷‍♀️

Been told to go back up to 40mg pred since Tuesday and no relief. Normally it works fast for me!!
Posted 6/14/2019 9:05 PM (GMT 0)
I assume it is just UC. With the tissue still inflamed (Xeljanz needs time to get inflammation under control) the formed stool is harder on the friable tissue.

Give it 6 more weeks

good luck
Posted 6/14/2019 9:10 PM (GMT 0)
With calpro of 200 and 2 formed BMs a day I would really question the need to go on prednisone 40mg. If xeljanz is working, let it do its job.
Posted 6/14/2019 9:26 PM (GMT 0)
DBwithUC this is a really good point thank you! I think when my body is playing up like this I kind of over think things and panic! I’m just petrified of ending up back where I was last year!

Poopydoop I completely agree but I was told to restart the pred before the results came back because based on symptoms alone it wasn’t looking good. Now I have the results back I guess it changed things!

I am just baffled as to how symptoms can be so relentless (bleeding wise) but things are actually improving. Being back on the pred is going to make it hard to determine if Xeljanz is in fact doing its job or not! When the stool sample was sent I was on 15mg so on paper things are looking good but the bleeding is freaking me out!

Reminds me of my last big flare and the decline was rapid.
Posted 6/15/2019 12:12 AM (GMT 0)
If you’re seeing improvement, it sounds like it’s a good sign things are going in the right direction and just getting going smile

When DH was on it, the prescriber said to give it 15-weeks to see real
Improvement; even though they say you should know by the 8th-week. In our case, DH never saw improvement so stopped just shy of starting week 7.
Yours sounds like a good news story!
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