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Streaks of Blood :(

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Ulcerative Colitis
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DavidEA
Regular Member
Joined : Aug 2017
Posts : 126
Posted 3/16/2023 7:47 AM (GMT -8)
Hey there,

I've been on Stelara since August and all has been well. It put me into remission. But out of nowhere last week, I noticed streaks of blood in my poop. It's not very much but pretty consistent. I had some Uceris so started it twice per day since I noticed the blood. It's not really getting any worse but feel like the Uceris might be putting off the inevitable. I coincidentally have a colonoscopy (scheduled long ago) for this upcoming week. And then I go on a vacation! Ugh. I'm just venting here I guess. I hate this moment for IBD sufferers, when you know what's coming. When things are still good, no urgency or pain, but it's the calm before the storm. I absolutely hate going on prednisone because of it's side effects and I'm unsure if it even works. And it makes my face blow up so much I hate leaving the house. And often times, when I'm in the thick of a flare, I can't even leave the house anyways.

I guess I just don't know how to feel anymore. My hope is that the Uceris can quickly put me back into remission but the flares are usually stronger than that. These medicines seem to work for me for a few months, then it's back to the bathroom. How does everyone deal with these start of flare moments mentally? The stress of this beginning only makes things worse and it's difficult to keep positive knowing what the months ahead have in store for me. Just feeling down and out. Thanks for listening.
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Serenity Now
Veteran Member
Joined : Jan 2009
Posts : 2680
Posted 3/16/2023 8:10 AM (GMT -8)
I don't deal with the start of flares very well. When my current flare was in the "just a few streaks of blood" stage, I was basically in denial. Came up with all kinds of explanations other than "it's the start of a flare", so I delayed doing anything about it longer than I should have.
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madampoopsalot
Regular Member
Joined : Jan 2018
Posts : 116
Posted 3/16/2023 8:33 AM (GMT -8)
I hope stelara keeps working for you.

How do I deal with it mentally? Ummm, I usually cry. Even if I feel great, but then see blood, I’ll cry over what I might be about to lose.
Idk if that’s helpful haha. I totally know what you mean about anticipating the coming flare. Im usually more emotional about it before the flare has fully hit. It’s a sadness and disappointment. I really feel the loss of normalcy when I’ve had a few good months. When I’m in the flare though I start getting used to sick life again.

Stress is a huge trigger for me, so I *try* to stay positive and get lots of rest and stick to an easier diet and hope things calm down.
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DavidEA
Regular Member
Joined : Aug 2017
Posts : 126
Posted 3/16/2023 8:35 AM (GMT -8)
Hey. Thanks for response. I feel the same way. When I first see blood, I don't believe it's true. And also experience denial. "This can't be a flare. It must be something else." And even when I keep seeing it, and even when there's more, I say, no way, it will go away. Then one day it clicks and I realize it I'm in it. It's a terrible feeling but some relief in the acceptance. I try to keep moving forward because that's all I can do.
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DavidEA
Regular Member
Joined : Aug 2017
Posts : 126
Posted 3/16/2023 8:42 AM (GMT -8)
Hey Suttie, yeah that all sounds about right. "What I'm about to lose." That's a big thing for me too. I know what is coming. My quality of life decreases so much. Honestly it's the urgency and frequency that is the worst. It's difficult to hang out with friends, leave the house for extended periods of time, I can't have dinners without having to go to bathroom, take walks with my dog, I wake up three or four times to go, often sleep in different bed than partner cuz I'm up so much. All these things that make life enjoyable!

And same here with stress. I have a lot going on right now and maybe that's what did it. When you're in remission it's easy to fall back into normal routine of go go go. But I'm realizing that half the battle is getting into remission and half is staying there, and doing what you can to maintain that remission. Ugh, this life!
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1708
Posted 3/16/2023 9:49 AM (GMT -8)
I have no advice — just commiseration. I’ve been in remission for years now where I don’t worry about flares but have been having some “off” days lately and let me tell you, the fear and memory of trying to live with a flare comes rushing back pretty quickly! I try not to worry because I know that only adds fuel to the fire but it’s really hard not to. Being in a flare is just barely living! I sincerely hope you feel better soon. Let us know how your colonoscopy goes! Hoping this is just a little blip and you’ll feel better soon!
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7792
Posted 3/17/2023 7:00 PM (GMT -8)
Sorry to hear. Are you sure it's okay to take Uceris twice a day? I was only ever told I could take it once daily (9mg pill). I just want you to be safe. At least you have a scope already scheduled so you'll have some answers soon. If you have to switch meds, Xeljanz has worked great for both me and my boyfriend.
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