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Scared for first flare in nearly 2 years

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Ulcerative Colitis
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Posted 10/19/2021 5:51 PM (GMT 0)
Hi everyone,

It’s been a while since I posted on here...
I got diagnosed with uc 3 years ago. The first 1.5 years were pretty awful- got stuck on pred for 8 months with severe side effects, couldn’t tolerate azathioprine , failed humira after 7 months due to antibodies and finally switched onto infliximab which I will have been on 2 years this coming February. Shortly after I started on infliximab, I found out I was pregnant and we now have a nearly one year old baby girl. Things have mostly been good on infliximab though I’ve been plagued with anal fissures especially since having my daughter and still get some bowel symptoms on and off.
Just the past week I’ve been getting this bad feeling like things are going to go wrong for me, like today I suddenly had urgency out of the blue, also been having itchy skin but have no clue if that’s related.

I’m filled with dread about having another flare as not sure if I can cope. Just wondering how people process this mentally when you’ve been ok for a while and is there anything I should be doing to try to stop a possible flare?

Post Edited (ribbon23) : 10/19/2021 11:55:56 AM (GMT-6)

Posted 10/19/2021 10:04 PM (GMT 0)
I feel the same way. I was diagnosed 5 years ago and was on lialda and the apriso with a couple rounds of prednisone and was only really controlled on the pred. I couldn’t tolerate Imuran either. Finally about 2 years ago I started Humira and got everything under control. For the last 2 weeks or so I have increased gas and have had mucus with my stool twice. I feel down (almost got teary at work) thinking I maybe going into a flare. I emailed my dr today telling him something has changed and asking what steps to take so I don’t get bad. No email back so I am not happy about that.

What is worse is I had an appointment with him about a month ago and was saying how well I was feeling. Ugh… I probably jinxed myself.
Posted 10/19/2021 11:06 PM (GMT 0)
Ask your docs for some rectal meds and get your inflixamab & Humira levels checked. They usually do that the day before your next dose.

With inflixamab if your levels are low the dosage and or frequency can be increased and that could get you back to where you need to be

With Humira you could go to weekly injections to see if that would help.

Don't let the docs ignore you. I usually give at least 24 hours to respond and then I contact again if I haven't heard from them. I always got a response after the 2nd message and now they are really good at getting back to me quickly. They know now I only message if it's important.

It's best to attack a flare as soon as possible to hopefully keep it from getting severe so it's good that you are being proactive.
Posted 10/20/2021 1:05 PM (GMT 0)
I agree with CC. Don’t panic and be positive that these biologics worked for you . There can be dose adjustments, addition of rectal meds or maybe a short round of prednisone to get you back in remission. Act fast to avoid flare worsening.
Posted 10/20/2021 3:00 PM (GMT 0)
I second the rectal meds. Are you able to use mesalamine?

q
Posted 10/20/2021 4:53 PM (GMT 0)
Quincy... here in uk, they don’t seem to use rectal meds much, I also hate them. I’ve tried salofalk which are foam enemas with meSalamine in but give me awful stomach cramps. I get on ok with steroid foam ones but don’t want to resort to them yet... I’m only having one bm a day or mostly every other day but just getting some pain.

I’m definitely bad at burying my head in the sand with it all
Posted 10/21/2021 4:06 PM (GMT 0)
What aspect are you burying your head in the sand about?
Considering your skin is itchy, liver blood panel would be a good thing.

q
Posted 10/22/2021 7:56 AM (GMT 0)
I just tend to not deal with it very well and only seek advice when I’m in an obvious flare. I’m pretty sure my liver is checked through the blood test I have every 8 weeks at the infusion so I don’t think it’s that. I have a doctors appointment about it today
Posted 10/22/2021 5:26 PM (GMT 0)
I see. Let us know how it goes, please.
q
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