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Ulcerative Colitis
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Posted 11/29/2020 7:57 PM (GMT 0)
Remicade stopped working this year, started with mild flare with a bit of urgency and mucus. They tried upping my Remicade dose and frequency. That didn’t help either. The GI took me off Remicade about 6-8 weeks ago and said we would try Xeljanz. I’m going on week two and I feel even worse. Constipation, blood everytime I go, some urgency, pain, up every 3 hours at night. I am starting to feel weak and very tired. Pretty sure I will be going to ER tomorrow cause I need fluids. In Canada we can’t really choose to have surgery but I am sort of hoping she will bring it up. I’m going on year 14 with disease and just want my life back!! Sorry for my venting I’m just really tired of living like this.
Posted 11/29/2020 11:53 PM (GMT 0)
555 few on here can coach you regarding biologics better then me. I choose not to go on Humira or Remi bc of immune system issues. I lost my spleen when I was 18. I’m 61 now in good shape for my age. Both spleen and age decreased my immunity so I chose surgery in late 2017. Dr wanted me to go on biologics but I said no. So Jan 9th 2018 I had step 1 of 3 steps to remove colon. Best decision I ever made. I have my life back. No more anxiety about going in my pants. No more steroids No more Meds. Not sure what’s best for you but I pray u get the help u need. I feel your pain. 2017 was a bad year for me and my UC. Horrible year. Wasn’t worried in the least with surgery. I wanted to not be hostage to this disease. Get to ER if needed. Get hydrated. We love u here and relate to what your going thru. Keep us updated on what Drs say. God bless and be strong
Posted Yesterday 2:32 AM (GMT 0)
This disease is awful. All the uncertainty and pain is really tough. Hang in there and maybe they will bring up surgery as an option. I don't have experience with Xeljanx, but you are only on week 2 so far so you may still get a break. You can try mesalamine or steroid enemas in the meantime to see if they help while you are waiting for Xeljanx to work.
Posted Yesterday 12:34 PM (GMT 0)
Thanks smile I do have a call with my GI this afternoon so will talk to her before going to ER.
Posted Yesterday 12:45 PM (GMT 0)
Ask what options u have?? Give meds time to work?? We’re here to bounce things off us
Posted 12/3/2020 2:19 PM (GMT 0)
I spoke to my GI on Monday and she said that Xeljanz might be taking a bit longer to work. Ppl respond to it differently. She did put me back on pred to stop the bleeding. Hopefully I will feel a bit better in the next few days.
Posted 12/3/2020 3:04 PM (GMT 0)
Let's hope and pray 😄
Posted 12/3/2020 5:54 PM (GMT 0)
Can you not use mesalamine oral and rectal as well?

q
Posted 12/4/2020 4:00 PM (GMT 0)
Quincy, yes I do have salofalk suppositories at home. I will start using them regularly again.
Posted 12/4/2020 7:12 PM (GMT 0)
A good plan...but I would call to request 4g mesalamine enemas and supps during the day.

q
Posted 12/4/2020 8:30 PM (GMT 0)
I just am dropping a line to say I understand the discouragement. Flaring on xeljance myself. I have been on it since July, though.
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