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Miserable flare with no blood

Wed, April 17, 2019 8:11 PM

Hi all,
I’m new to the community and this is my first post. I’m joining the community because I don’t know anyone else with IBD, and I think it’s time I find community. I’ve had UC since 2010, and my flares occur on average thankfully only once or twice a year and have always been similar - diarrhea with bright red blood, extreme fatigue, occasionally some pain. This past 6 months or so,though, I began having extraintestinal symptoms, without active bleeding. It started out with unexplained flank pain, very severe at times (sent me to ER). Hurt so bad I could barely breathe. That got better with steroids. Fast forward about 4 months to now, and I’m feeling worse than I’ve ever felt. Mostly, I’m very, very tired, and I’ve gotten to where I can’t stand for more than 30 minutes without feeling absolutely blasted with exhaustion. I still don’t have my most typical UC symptoms, as I don’t have any visible blood in my stool. There is a fair deal of mucus though, especially over last two days, which has helped me finally recognize the symptoms as a flare. I’ve been on Lialda since 2010, 4.8 g. But that’s not cutting it anymore, I don’t think. On top of it all,I’m suffering from severe allergies due to a severe deviated septum. I’ve had chronic sinusitis for at least a year, and I think that’s increasing my fatigue more than usual and perhaps driving my flare

Do the rest of notice you tend to get flares when you get another kind of illness? Do you find that your flares vary over time? This is the first time I’ve had a flare that just wont go away, after 2 months. Because it’s an atypical flare, it took me a long time to recognize it as such, and I’ve got an appt with my GI for a consult. Because I didn’t recognize immediately, I didn’t get help sooner, thinking I was just tired from allergies. For those of you that have variable flares, how do you decide when to seek more treatment or not? Is there a threshold for you all for, “I should go to the doctor!” Versus “This is just part of the disease and I’ll deal with it!” I think that’s the hardest part for me.

But this UC flare has sucked. It has zapped my energy. I’m missing work, which isn’t good because I am a healthcare provider and have to cancel patients when I miss. It feels near impossible, though, to work a full 8-hour day, especially when I’m pooping frequently.

Last question, does anyone else tend to have very smelly flatulence when they are at the beginning or end of a flare? That’s another particularly embarrassing symptom for me, especially if I’m with a patient! It’s hard to hide when you’re alone in a small exam room.

sorry for the long post. Most of this is venting and just wanting to share my story with the community. But I appreciate any input you all may have.

UCPsych
Joined Apr 17, 2019

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